This blog is a personal blog where I will share my migraine experiences. I’ve have had debilitating Chronic Migraine disease for over the past decade. I am an extremely optimistic and positive person and I hope to be comedic in my post to give those who suffer a giggle. I am here to be me and nothing else. Like it or not.
My life, after 12.5 years of Migraine, my life went back to normal- no pain- after a rare diagnosis.
It has ben so long since I’ve written for you and I did not mean to leave you hanging. My blog posts are real and I am always sharing my vulnerabilities with you. Writing and reading has been very difficult for me all these years. In fact I am re-learning to write and read.
I have been trying to write in my blog, with this update, for weeks. BC I could not write I took a video but couldn’t post it.
I have some amazing news and I truly hope this applies to you.
Last summer, my migraine specialist of 12.5 years said she could no longer help me. I was getting much worse and was in the ED a bunch of times leading up to this. My migraine specialist refereed me to Barrows Neurological Institute, which is located in downtown Phoenix, AZ and is rated #1 in the world for neurology and back and spine treatments.
I was thrilled to have them assess me and my case.
June 8th was my first tele call with my new Barrows neurologist. She asked me me few simple questions…Where was I and what was I doing when the. Migraines came on. I told her that James and I were off-roading in his truck through the desert here in AZ. The migraine hit me within 20 minutes of the drive. We had 20 more minutes to get to our destination. By the time we got to our desired location I was screaming and vomitting. It scared me to death. I went home and took 2 pain pills that I had left over from a knee injury. I can say firmly that they did not even tough the migraine. I was in the ED the next morning. I shared this with Dr. Robblee (my neurologist and she said….I”I don’t think you have chronic migraines, I believe you have a spinal fluid leak. This means trauma induced this spinal leak condition and migraines are a side effect. I had never heard of a CSF leak (cerebral spinal leak) and she told me its a newer diagnose and not aware in the medical community. Many doctors, headache clinics and hospitals do not know about spinal leaks which leads to under-diagnosed migraine patients misdiagnosis. The good news folks- if you get the leak fixed- YOU CAN BE CURED OF MIGRAINES!!!
After my first call with Dr. Robble- she diagnosed me correctly within the first 10 minutes of our call. AS you can imagine- the possibility of being free of these migraines and medication side effect, I was thirilled!
July 13th, 2020 I had the procedure to fix my spinal leak. They do what’s called an epidural blood patch. They take a lot of blood from your arm and by using a big needle they take that blood and insert it my spine. I was on the table in OR, awake and within seconds of the blood gong up my spine and with in seconds all of my pain WAS GONE! Holy toledo! I laughed, cried, screamed and yelled that I was pain free! The surgical team all clapped their hands and we’re so happy the procedure worked. Folks..I was pain free for 4 months!
During that time I went through medication withdrawals. I had started to drop dosages on my my migraine meds bc I didn’t need them any longer. I am telling you I felt so FREE to live my life again and to get back to normal! The blood patch worked and I was cured!
In January of this year, I started having daily headaches. They got worse over the next few weeks and the pain turned into a non-stop migraine. I spoke with my neurologist about this and she believes that I have a small leak in my blood patch and that I should have another patch done. Now- pls know there is a 3 month recovery with this. Others who have had the blood patch done, only have a week or a month recovery.
I went in to St. Jospehs hospital, which houses Barrows Neurological Inst. and had my second blood patch, this past Friday. It is very common for those who have blood patch, to have a few patch to cure long term. The most patches a person has had was 6. I am hoping this is my last one.
That day, my medical team determined I need a test done called a Meylogram CT….has anyone else have this test? They started with a lumbar function and removed fluid for testing. Then they put contrast in my spine. Next up was a CT so they had to ensure the contrast was all up and down in my spine. For the Meylogram, I was strapped to a table as they moved me up and down and side to side, to spread it. My surgeon said, when they put me upside down, to get the contrast into my brain, it would be very uncomfortable and could cause a migraine. Great. It hurt so bad when they put me upside down that I blacked out. They did the CT and found no leak (the Meylogram tests measures pressure in the brain) and can show the exact location of the leak so they could target shoot it. Many leaks do not show up on imaging…even the best imagine available. Doctors usually go by a patients symptoms, which are specific leak symptom.
I am doing much better today after sleeping 72 hours. I know this headache I have now is from the contrast dye and the tipping me upside down. I want to get my life back…like we all do. DON”T GIVE UP.! We are some of the strongest people out there. WE shall OVERCOME!
CSF Leak symptoms…
If you had trauma and your migraines began than or they began at a later date…you could have a spinal leak.
If you feel drainage in your throat or nose…you could have a spinal leak.
If you have an “Upright or Positional migraine ….you could have a spinal leak.
An upright or positional migraine is where your pain gets worse as the day progress and hurts more when walking, standing or sitting and feel a lot better laying down.
This is a life-changer. They say that 5 ppl out of 100,000 migraine suffers have a leak that could be fixed and get their life back…I believe that number is too low. I am confident that there are many more ppl who have this leak. As I mentioned before this is a new diagnosis and not well known to the medical community. I had to go to the best hospital in the world to get diagnosed with a leak. My life mission is to bring more awareness to spinal leaks. I am writing a book, creating web-sites and will create a non-profit to help migraine sufferers with essentials and finding health care.
There is so much I want to tell share with you but will have to do so in other posts.
A CSF leak (spinal leak) can be fixed! It is a miracle diagnosis an is giving suffers their lives back- without migraine pain!
Thank you for continuing to follow me. I want to hear from you…we all need support. I feel very sad and lonely. Do you have the symptoms of a leak? If you see a neurologist for this make sure they know something about spinal leaks or even that their willing to learn will be the way to go for you. If you see a doctor who does not know about the CSF leak diagnosis and symptoms will mis-diagnosis you, if you have a leak.
I am praying for all of us! It feels good to talk to you all (well communicate in writing).
Has anyone else had a Meylogram CT or a blood patch? I want to talk with people who understand me….like you.
I love you all.
Thank you for being there for me
I am always here for you.
I will never stop fighting for more research to be done to help all of us find answers.
Over the past 3 months I’ve only had a couple of days of breakthrough migraines.
Until 18 days ago.
Fucking “breakthrough pain”…migraine pain. The mother-fucker…it hit me nearly 20 days ago. The fucking beast is back, despite my hopes and prayers that I’m healed. I have too remain hopeful. Although not feeling so right now. This migraine, migraine, like most I’ve had, included a trip to the emergency room. I’ve been on steroids, and steroid injections, IV fluids, narcotics, anti nausea medicine/therapies. Since my ER visit I’ve drank nearly 400 ounces of migraine specific, chamomile and ginger tea. I’ve been using the Celafy device religiously and now on my second dose of Prednisone. Yes, this one is really bad and I’m up in arms as to what to do about it…
When seeking treatment at the ER, back in the day, they use to give me a heavy narcotic to STOP the migraine pain in its’ tracks. I would leave feeling fine- no more headache. Not anymore. Times have changed. Even though the local ER staff know me and what helps me they only give me steroids and Tylenol.
I’m sorry, but if I leave the emergency room with the headache still remaining, I know there’s nothing I can do at home to help. If I leave ER with a pain level of 6- I know I am doomed. I cycle between hope and faith and discomfort and tears.
Migraines interfere in my life for weeks at a time and months a year. I do so well, managing pain and symptoms, then it will hit me out of no where…what the hell, is this madness? One day one medicine will help and the very next day, it won’t. I’ve been in bed, in my dark room with my own air conditioner, for nearly half the month. Ice, cold showers, aromatherapy, chill music, stretches, breathing exercises and of coarse eyelid kisses from my man, all help me creep along the way.
I know a lot of people who suffer from migraines find they eventually just go away. A lot of women sufferers find that their attacks are associated with their period and that the migraines stop for them after menopause. Not me.
So when will this miraculously go away? (haha! Let’s laugh about that)
After 12 years of dealing with this totally life changing, debilitating disease, and thus 12 years of spending a majority of my time on the sofa, I can’t imagine that my migraines will just miraculously go away. They are such a big part of me, a huge part of my life. I feel like I have an extra limb that’s attached to my body that Is awkward and unusable. I have to make adjustments to my care, daily. It is a full time commitment to keep me out of pain.
To think geez, what would my life actually look like without migraines- Total freedom of pain?… I think I’ve earned that. We all deserve peace.
I pay my respect to all migraine sufferers. We are a strong group of people. I’m pretty bad but I know there are thousands of people that have my type of migraines. 1% of all chronic migraines suffered have the type I do.
I lift all of us up.
This pandemic has been good for my well-being, and maybe for you too. Or you could be feeling worse due to all the changes we’ve had to make, those being our natural comforts.
Much of my work is done online. So I can still develop my business while I have this time so when we do reopen the economy I’ll be prepared to meet the demand of self healing. Being creative stimulates me and working on things that I enjoy is all more of a plus.
I am on social security disability and get a check every month. (Thank you God). This is what I’m living on. It’s no where near enough but I’m grateful for all the assistance I’m given. Having my disability check and Medicare with supplement coverage… I feel very secure that my needs will be met, unless my health declines as I fossilize or circumstances change (Who knows, I may win the lottery!)
I’m spending this time on my needs and wants! Investing in my well-being. I’m much less stressed and I’m starting a new adventure. Life after Quarantine. I’m doing things I enjoy that I’ve never had time for. And during this time, focusing on things that make me happy. I’m promising myself that my new hobbies will not go away as the world moves forward and we “open up”.
My neighbors and I have started a huge garden full of veggies and fruits that will hopefully grow and grow enough food for 7 people. My neighbors are a family 5 than there’s us, a family of two. This garden is about 500 square feet and it’s packed. In addition to the garden itself we have planters full of tomatoes and lots of flowers. I’m in love with this garden!! We spend have spent countless hours on it. To sow these baby seeds, inside, then to anxiously watch them flower until they are ready to go into the ground. I can tell you, at this moment, the garden is ALIVE. It’s so satisfying to see our hard labors come to life. We’ve been blessed with growth, and l hope that continues. It’s something that I love having in my life.
Here’s something exciting which I couldn’t wait to share is that I’m soon starting physical therapy for my migraines. How cool is that?! And something I would have never thought of. None of my doctors have suggested this and why not? I’m going to try it. My posture is far from good. Yoga this last year has strengthen me and has lengthened my spine. (So yes I’m taller now!) My hips are unbalanced, one shoulder is higher than the other and I carry stress in my neck and back…. this could be causing or at least attributing to the migraine pain. So shit! I’m going to go for it! Why would that not help?
Have any of you had physical therapy for your migraine pain? And if so, did it make a difference?
I’ve been on the Ajovy injection preventative treatment since January and it has worked WELL! Well, not so good these past 3 weeks. It works with my other medication to help stop the migraines from developing. But I’m all too disappointed that this current migraine has broken through. I’m not giving up on Ajovy.
I tried the Emgality injections last year and it had no affect on me.
I also just purchased a Neck Sling which uses traction to eliminate neck pain and stretch the muscles. It is also suppose to be good for posture and relieves tension headaches. I bought mine on Amazon. I’ll let you know how I like it.
But I kept the battle going by having continued hope and having a positive attitude to try something else and thus my doctor recommended Ajovy. These past few years has brought much hope for migraine sufferers. We have more choices than ever before.
Now is the time. KNOW YOURSELF AND YOUR DISEASE.
Are you thriving or surviving?
God bless all pain sufferers and for the support you give me by reading my posts.
Chao for now.
Ps- the last time I posted I had action steps to do where you determine your top 5 most important priorities?
Now-look at your upcoming schedule then discover what actions in your future 2-week schedule are not within those priorities. Delete at least one scheduled event. This could be the start of your transition and willingness to commit to a calmer more fulfilling life with your focus clear.
I have not written and posted a blog in a while and that I regret very much. It is my goal to write in real time, or write -when circumstances of a migraine present themselves and the experience that comes with that. I want to be completely transparent with my writing and sharing with you material, uplifting messages and my personal experience with migraines and chronic pain/chronic disease. However, when I am experiencing a migraine attack, it is hard for me to form thoughts and sentences and type on my computer or use pen and paper. I have my computer set on dark, so the light is OK, but it’s more the lack of focus and clarity that I have which prevents me from writing. I simply can’t think past the pain. Besides, if you’ve had a migraine attack (or any hard pain) you can understand that when you are in the midst of that much suffering, that becomes the only thing you think about. It becomes your only focus with laser intensity. It is your constant, and you have to try to relax your mind and body to try somewhat to calm down in the chaos of the pain and other attached symptoms. The anxiety that presents itself is horrific and I simply can’t do anything else. The anxiety hits me badly when I am in the midst of a migraine attack…I am so scared of the pain getting worse (and nothing can help to ease it) and how long will it last? How long can I physically take it? These are my fears and bc of the I develop major anxiety….Does this happen to other people? I can not be the only one.
I have written about anxiety and migraines quite a bit and I believe it is s subject that we don’t know much about. Or you can find this on the web..”Migraines and chronic daily headaches are common in people who suffer from anxiety disorders” or Many people with panic disorder will experience a headache right after having a panic attack. Those with panic disorder have been found to suffer from more severe headaches and migraines. … Those who have a co-occurring diagnosis of agoraphobia and/or depression also experience more frequent headaches and migraines” or even “Anxiety can after some time, or in case of major anxiety, lead to tension headache. If you are anxious, your entire body tenses up and your body also becomes exhausted. Like with the past two causes of headaches, this can also cause tension to remain in the body. Especially tension in the neck is dangerous. BUT what about how having migraines can increase chances of Anxiety along with ANY chronic pain disease. Common research found states that people with Anxiety Disorder can develop migraines. WHAT ABOUT how those of us who have pain that can develop anxiety BECAUSE of the pain. And the pain being the instigator for the anxiety felt.
I don’t feel, with enough research, the above my change.
I have had chronic Status migraines for 12 years and thus anxiety and for those 12 years my migraines specialist has never agreed to my request for anxiety medications simply responding with “I am not a Psychiatrist” “See your Psychiatrist”.
I don’t think she saw a real connection between migraines and anxiety vs the common that those with anxiety can get migraines. When seeing my Psychiatrist, and sharing my feelings about how when I am in pain, my anxiety soars and brings on panic attacks…again, BECAUSE I am so afraid of how bad the headache pain CAN GET. I am scared shitless and all that uncertainty inflames anxiety in me.
I have talked about fighting through your migraines or any chronic pain. I feel it’s vital for migraine sufferers to still try and live their lives as best they can. Our pain levels vary. When the pain is on the lighter side I try and go for a hike or do stretches or go to yoga, all of which help me deal with my symptoms. BUT, I understand not all people who have chronic pain can do anything during an attack. My migraines are severe, chronic and debilitating and they last weeks to months. So for me I can’t lay in bed, in a dark room, with earplugs and an eye mask, …for that long of time. I have things that need my attention during the weeks I am in pain. To try and break free from this curse. I live my life within this massive distraction. Getting out in nature is my best cure. Honestly. It brings me such joy to be hiking the mountains and plateaus of the Arizona desert. I absorb the heavenly gigantic Red Rocks and Forest land. I like hiking in quite ares, on trails that are not crowded. It helps me to breath, feel the warmth on my face and to move my body with no inhibitions. Again, if I am not in excruciating pain, this is my best relaxer. But if my pain is so bad that I need to go to the emergency room, then I am in bed, earplugs in, eye mask on and door closed, trying to sleep through the pain. Can you relate to that? I bet you can. If I can sleep through the worst part of the pain that is a good way for me to deal with it. But unfortunately that is something I have a real struggle in obtaining.
I the past two months we have settled into our new ..our new mini-home (!!!), I traveled to Florida to surprise my Dad for his 70th birthday and just recovered from an attack that lasted 27 days… and an earlier one that lasted 16 days. Oh, just so much fun. WHAT?!?! Even though I know my diagnoses, I still am shocked when I look at myself, outside of myself. I see the damage and how severe the migraines are for me. I often feel very alone. Who can possibly understand disease I have without being in my shoes? If you have chronic migraines, perhaps. But I have headache or migraine pain 247. All the time. Every moment. It’s my constant. I often feel alone, isolated and misunderstood. I wish I knew someone like me.
My husband and I are having blast coming up with ideas and solutions for our home/property. Digging dirt and leveling land, building out-buildings and organizing our house. We had a mini-home built and due to it’s limited space, we have to be creative with the space and having things put away but easily assessable. We are finding creative solutions to make a mini home work for us. We came from a larger townhome and really wanted to go “tiny”. Although “tiny” is not for my 6’3 ft tall husband, so we compromised. He needed at least 9 ft ceilings and I wanted small square footage, so we went “Mini” instead of tiny. I am hoping being in this home and on our land will allow my soul to embrace the beauty that surrounds me, let my creative juices do their magic and strive for tranquility with the chaos of life. My escape, my sanctuary, my hiding place, my healing space.
I flew to Florida in early January to surprise my Father for his 70th birthday. Despite all the risks of getting an attack. Which include being away from my local emergency room, not having the right medications to help relax me,…to make my mind calm. Which help decrease the stress that affects me which ends up causing an attack. Being away from my husband, who is my primary care taker, was unsettling. And of coarse, the chances of getting an attack were extremely high. I knew I would be off my routine, or not practicing my daily rituals,… that when done daily (247) help to decrease my chances of a migraine. AND if I do not stick to my routine, I get a bad attack.
Note* every single time I travel, and like seriously EVERY TIME, I end up in the nearest emergency room. I have not traveled in years but the thought of not only seeing my parents was exciting and of coarse surprising my Dad was thrilling and something I really wanted to do. I thought to myself…if I get an attack F%^k it!!! I AM GOING TO SEE MY DAD!!
Dad does a lot for me and I wanted to show him how much I love him. He and I have not always had a good relationship. I always felt like I needed more from him or wanted more from him. I felt ‘without’ when it came to our relationship…I always wanted more. I felt abandoned by him. And let me tell you I went to years of therapy to learn to accept my Father the way he is and to know that he loves me and he just may show his love for me in a different way than the way I show love or how I perceive love. And that’s OK! Realizing that parents make mistakes and they are only human (not super heroes), early on in your life, will save you years of therapy as you get older. Trust me- if you don’t hash out your feelings for your parents then it could bleed into other areas of your life. It can affect your relationships or you can develop emotions such as not being able to love, not having healthy relationship or you live your life fear and anger. Take care of your emotions and take control of your own healing. Don’t just complain about your childhood experiences …Do something about it. Besides, if you have this emotional damage it could be contributing to your disease. Release it and fill yourself with love.
Dad and I have become much closer in this past decade and I wanted to show him, that no matter what, I love him dearly. No matter how sick I may be that I can still participate in loving my family and being with them (even though being with them can give me a migraine). Healing relationships and having healthy relationships helps to make me feel complete. Content. Fulfilled. Satisfied. A positive relationship will fill your heart with joy and good feelings. It can even improve your immune system (no joke). The relationships that I have are healthy and good for me. IF not,..then I “delete” that person from my life. Really, this goes with any toxicity in my life. I don’t deal with it well and I am not going to allow that bullshit into my life. I have to defend myself, from people, doctors, treatments, medications and family and friends. I have to be thinking ahead and stopping negativity as soon as it becomes apparent.
My Father was surely surprised the day I arrived. He couldn’t believe it was me when I got out of the car. It was evening time so it was dark and he had been drinking cocktails. So when I got out of the car to approach him he didn’t recognize me. He had to re-set his gaze to see more clearly and it took him a few minutes to understand it was me. All the way from Arizona and I was right there in front him. Something that would never popped into his mind, never. It was such a great moment when Dad realized it was me, we connected in that moment, something I’ve always craved and something I will always remember. It was tender, cute, reassuring and emotionally uplifting. He was happy and excited. Once he realized I was staying for a while he was truly taken a-back! When I hugged my Dad, it felt like I was hugging my Mother,…who passed away 20 years ago this September and who I miss so much. That hug with my Dad was warm. His face was warm and that reminded of Mom. The connection I felt with my Dad is one I’ve never felt with him and it was reassuring that “yes,…he does love me” and that he was truly excited to have me there for his numerous, weekend birthday parties, where I could see all his friends and to meet those I don’t know. After all, his friends in Florida, where Dad and my step- Mom spend their winters, are his second family. It was a special weekend filled with love and connection. My step- Mom has a chronic breathing/lung disease and being there with her, it became very apparent to me as to how severe her health issues really are. She has a hard time breathing, at the age of 68, due to COPD. We also connected and I felt we bonded in a way we’ve not before. This trip I made was also to spend quality time with her and I was really looking forward to seeing her. She is an Angel. I am very lucky to have her in my life.
So the burning question is…Did I get a migraine while traveling…
well of coarse the answer is…Fuck yes. Would there be any other way?? Could there be any other way!? Could it be different this time?…not a chance.
While in FL, I was completely off my routine. Lack of sleep from traveling and early flights, time change and not having my meds were an RX for disaster. I knew, I tell you- I KNEW I’d get a migraine while out there…but to me, the risk was worth it. I figured if I have to go to ER and suffer it is worth it to have this life experience and increasing special memories with my family.
I simply can not, repeat..I CAN NOT let my chronic disease of migraines rule my life. I WILL NOT ALLOW it. It has for too long. This attitude I have now has not always been so. I go through periods of depression and questioning my purpose. I can get way down into the dark side. Plus my anxiety disorder and being Bi- Polar can play into my depression. In other words, I am easily affected. I believe having a chronic pain issue can increase risk of depression and self-questioning.
Since you have heard from me last, I’ve been been down for 30 days with migraines attack. Oh joy. Feeling so much pain and not knowing what’s next or if it will get worse and/or if I can even tolerate it., fuels much anxiety and uncertainty. My anxiety is amplified 10- fold because I am constantly worrying about how bad the pain is and how bad it can get.
Ahh, I can finally focus on decorating our new home and doing projects to improve our comfortability. I am so excited, and must share my excitement (!!), that my neighbor and I are putting in a path from our home to their home (because we love them), a trail around the perimeter of our property and leveling to create plateaus in our back yard. My goal this Spring is to construct a Labyrith path. I mediate while walking Labyrith paths or Medicine Wheels. I love walking and becoming aware of my surroundings, living in that moment. I pray, I set goals and I picture the future me on MY TERMS, without judgement and only curiosity. It is an experience that leaves me refreshed and revived.
I am guessing, that if you are reading my blog, you also suffer from severe headaches and/or migraines or chronic pain of any kind. So you get what I am saying. I feel very safe sharing my experience with you and I hope to lift you up and give you hope.
On another note* It is so important to monitor and track usage of your medications and I encourage you to do so. You can share this information with your doctor and also review what you’ve written/taken so you can see what you are taking, when and for what symptom. This can be very helpful in discovering possible triggers to your pain. You can identify moments where you should have been more careful or could have done something different. When you are on a lot of medications ( and I am up to 12 medications and 5 more if I am having a full blow attack) without keeping track of my meds I would need a professional caregiver to help me keep track and help that is unavailable. One of my favorite new apps is Migraine Buddy. Give it a shot- I use it religiously.
I’d like to leave you with this song. When I hear this song I sing it out-loud and dance…it makes me feel like I am free of all that inhibits me.
”RISE” by Selena Gomez—
You can stand beside the madness like a fallen tear (*can you relate?)
You can hold on to the sadness like a souvenir (*don’t look back in the rear-view mirror)
Or you can close your eyes
And see your life
Like the air.(*BREATH!)
You can tap into the strength you never knew you had
(*you are a lot stronger than you think you are!)
You can breathe into your faith no matter where you are
Just close your eyes and change your life (*visualize your ideal life)
Like the air
Like the air you can
Rise from the rubble with your mind, you can hover(*you are super human)
You can rise like the tide, like the heat it in the summer
Yes, I know there are those who will wanna bring you down (*don’t judge but do forgive)
But you can rise with your mind and make your higher power proud
You can rise, like the air you can rise
The earth can pull you down with all its gravity
And the measure of your worth is sometimes hard to see
So just hold on, when the night is done
Like the sun
Like the air you can
Rise from the rubble with your mind, you can hover
You can rise like the tide, like the heat it in the summer (*you are empowered!)
Yes, I know there are those who will wanna bring you down
But you can rise with your mind and make your higher power proud
You can rise, like the air you can rise (*breath deeply)
So even when your bones feel like weights
And it’s hard to lift the smile on your perfect face
You can still find a peaceful place
Close your eyes until you’re floating up in outer space(*LOVE THIS!)
It’ll be alright, they’re just jealous of your highs (*don’t live to another’s standards…be YOU and be TRUE to yourself)
So they can knock you down, but you can breath it in
Like the air you can
Rise from the rubble with your mind, you can hover (* yes,..you can soar!)
You can rise like the tide, like the heat it in the summer (*this line warms me)
Yes, I know there are those who will wanna bring you down
But you can rise with your mind and make your higher power proud
You can rise, like the air you can rise (*rise above all else)
I am sharing this song with you (and my inner thoughts in BOLD) because it has a great melody, uplifting but also help you to become aware of your own power- your inner stretch. Yes, you CAN RISE above the pain and sorrow. Make it happen for you. Get moving or start meditating. DO something to help your symptoms and the way you feel each day. Maybe creative coloring would help you reach a calm state. Creating a Vision or Dream Board can be realizing and give hope for the future. Promoting the fact that you can do anything you set your mind to…you may have a harder time than everyone else. But YOU”VE GOT THIS! Tell yourself that..”I”VE GOT THIS!”. Lift yourself up and RISE to be your whole truth and individuality. Be proud, fight like you’ve never before.
I encourage you to get out of your own head and do something that will help you manage your disease. It’s not all up to the doctors, you have choices and can mange your health to your best ability.
I am sending hugs and love to whomever reads this.
I wake to write today in a pitch-black travel trailer. It is 4:00 a.m. and we are now livening on our new property. I call it “property” bc we have a few acres and have no house yet. We have been living in my husband’s Brother’s travel trailer for the last week. It feels great to finally be living on our land. The problem is all the systems in the trailer itself are failing. In the last 72 hours, we have lost hot water, heat and, most electricity. We have one electric outlet that has power but cannot use both plugs at the same time. The electric heater we bought keeps shutting off and setting the breaker off. The only thing we do have, now…is the Internet. :). So I can finally write again. But without lights and heat, it’s no fun!
A few days late and with no more internet. Living on our property, in the trailer, has proved a no-go. We don’t know what’s wrong with it but we do have an idea and the owner needs to fix it.
We have just made our 4th move since May and have one more move to make…We are again in temporary housing at a friend’s home…gosh are we so lucky that everyone has been so hospitable. We’ve not had to worry as to having a homestay in. But we are unsettled and have been since May. It has been rough and very stressful. Having chronic, status migraines does not condone itself to not having a warm bed to call my own, or my own home to draw dark has been challenging to say the least. WTF…when will this be over. I’ve gone through all my pain pills…they are supposed to last me two months and they only lasted one 5 weeks. (It’s important to note that I am on a low dose of pain meds of which I do not take often. Except when there is a lot of stress in my life then I get “breakthrough” pain. I always have a migraine (lucky me), it hasn’t gone away for the last 12 years. Despite that and the bleak outlook that I will ever recover, I am still hopeful. It’s all about attitude. With a positive attitude, you can make it through any situation. Trust me.
On the positive-we are supposed to move into our mini-home the third week of December. At least that’s what they tell us. We were supposed to move-in September 1st!! omg. So my hope of this happening in the next couple of weeks is not great.
It seems my migraines have become more frequent but a bit less severe. Thank God. Although, I seem to be nauseous every day, all day. Yesterday I threw up all night but had no headache pain. My lifestyle is working to keep my migraines at bay as much as it can, but I am aware what we are going through is stressful. It seems life itself is stressful for most of us who are just trying to survive each day. A migraine can be so easily triggered that even those that can point to their migraine triggers still have attacks that come out of nowhere. I don’t yet believe I am getting better, bc I have had hopes before. I will take what happens to me, in stride and with a positive attitude, whether I am improving, in a holding zone or getting worse. I go through phases. For a few months I can stay out of the hospital then boom, for another couple months I am admitted much too often. I have months where my pain is controlled and I can be productive (or as much as I can be) and other months where I can do not a single thing but take meds, keep quiet, stay home, cry and cringe, vomit and suffer through the pain. I get nothing done during these times. I can’t be the wife I wish to be, the friend or I can’t be there for my family like I’d like to. I feel less than…of a person. ”
Faith has become one of my natural pain control methods. I believe in something bigger than us humans. I believe in “your kind” of Spritritualness and being calm and at one with myself; always being true to self and following where my needs lead me. I have attended over two dozen churches usually non-demonization churches and I do love the beauty of the more traditional Catholic churches. I was raised Catholic, my aunts and I joke that we are “recovering Catholics” lol. …still trying to come to reason with the guilt and often frightening way of the Catholic Church can leave fear and shame in you that stays with you forever. It makes you question your faith. Am I comfortable in this place? Does this place bring me joy? Do I grow here or am I being stagnant? Once I moved to Sedona, AZ I tried, but could not find a church I felt “right” in. Where I could be myself and a church that would accept all. I now find what I call my “glory state of spiritualness” here in Sedona. The beauty here fosters what most people call their Heaven. Regardless if they believe there is a Heaven. Most people feel the word “Heaven” refers to a final resting spot where we are at peace and joyful. Does that happen, that’s your opinion. My point being is that I have found my higher power in nature. And if I can do so, so can you. Daily walks (when I am not in bed), sitting in a park, watching the animals and feeling the sun on my body. I absorb even the smallest natural environments and much of that starts in my own home.
Is your home your safe space? If not-figure out why and choose to make changes for you to become more comfortable and worry-free. I always say you have to “clear the clutter” to make room for new furniture. This is a metaphor for organizing your home to be simple and easy to maintain and of course comfortless and what will bring you calm. You must have your “escape” to be in place before focusing on a new project,..including investing or improving your health. This is not possible for everyone and I get that. I shouldn’t speak. We are so unorganized right now, after being in so many temporary homes, we don’t have all of our stuff, and we are living in chaos with boxes and bags and it’s hard to find something.
Do you feel your home has good energy? If not-Sage your home or have it cleared by an Energy Professional. Does your home relax you? It is your sanctuary? It should be. The colors in your home should be light and uplifting, such as purples, blues, yellows, creams. Not brown or darker colors and bright colors such as a stimulating red or depressing black. Your home and what you put in it should refresh you after a long day. Do you have too much clutter in your home? Your home should provide you with good rest and it should provide as a place or rejuvenation.
Does your home hold-up? Ask yourself the above questions and be real. Take charge of your environment.
What is your spirituality like? Do you have faith? Most people refer to the word “faith” with religion or even organized religion. But there is a different kind of faith. Faith can be believing in yourself such as “I have faith in my strong body to fight for a better life”. “I have, within my body, the means to heal”. The more positiveness you bring into your life and your attitude, the more joy you will feel. Do something for yourself each day, even just for 5 minutes…this has been proven to enhance people’s lives in their career, relationships, self-love and so much more. Bring even a small dose of pleasure and joy to yourself will teach you to better take care of your self and truly, joy will saturate all areas in your life. That your situation could change for the better. If you believe whole-heartedly in hope and “your kind” of faith, you will carry it with you going forward. Yes, we all have depressed days and more of us have a lot more of it, but if you can maintain a positive outlook, you are more likely to reap positive circumstances in your life and your health. If you believe…it can happen. And the more positivity you infiltrate into your life, the more positives you will be rewarded with.
I have been told that I have a great attitude when it comes to my debilitating migraines and how it affects my life. My husband has said if it were not for my great and hopeful attitude, dealing with chronic migraines and what that entails, he would have not been able to continue to care for me and may have left me if I just crawled under a rock and be constantly depressed. I know this and it pertains to everyone in my life. So I do try, most of it comes naturally but not for all of us. I guess I’d have to give credit to the life I do have even with migraines. I am real with my healing. It may never get better and I may suffer for the rest of my life. I’ve had to come to terms with that. My life may be shorter than my husband, friends and my family, due to the medications I am on and their side effects. THAT’S OK! And my husband agrees. I would rather live a happier and freer life and enjoy what I can while I am living. I would much rather be on drugs (and plenty of natural therapies) than to have no life at all and be in bed 247- 365. THAT would kill me.
Do you have a calming home?
A calming bedroom?
Do you have faith and what do you believe in?
Become in touch with what you need to make yourself as comfortable as you can. This will not happen for you…you must take control.
One of the things I do when I am having an attack, I take my meds (I cannot drive on them) and I organize my sock drawer, cleaning out my wallet, maybe some light dusting. I have had this disease and felt this severe pain for years. And honestly, I have the meds to control most of my pain. I am so fucking tired of being stuck in bed and living in a dark room. I can’t take it any longer so I try and do light projects, then I will go back into bed.
Find what works for you, but please don’t stay depressed all the time. Have faith and hope, take control of your healthcare. Know what you need. Organize your lifestyle and life to do the things you can. Having a routine has helped me immensely.
That being said, I wish you the best I possibly can.
Until next time and with love and care for all those who have chronic pain.
Yesterday, evening, around 4:00 pm, I started to feel anxious, irritable and my nose became very stuffy, and I knew then that I was in trouble. It was happening again,…my migraine-headache pain is breaking through my medications and I felt it would hit me hard overnight. I went to bed and just asked God to please let this one pass….
I took a Maxalt, Phenergan (for nausea), 2 pain pills and 2 Ibuprofen. Ibuprofen is my go-to anti-inflammation OTC medication. I am also given Toradol and will take that after a small dose Ibuprofen wears off if the Ibuprofen hasn’t helped. Sometimes Ibuprofen and pain pills will do the trick. I take a probiotic every day and surly each time I take an NSIAD, to protect my stomach lining. I also take Prednisone when my pain is at a #6/7 as my first line of defense to see if it takes the migraine away and if not-that is when I go to the hospital. I normally go to the hospital when my pain level is a #7. I am too afraid to wait for until my pain rises higher. It takes time to check in to ER and get back into the room and wait for the nurses, then the doctor. So usually by the time I am given medications, my pain is at an 8 or 9.
I have been bad.
There is something called ‘Self-sabotage’ where one can think, ”I’ve done so well, I deserve a little more, or I deserve to be bad or I deserve a treat” …these are the type of tricks that your brain will play on you. And it got me this time.
I was doing so well, and posted about it in previous posts! I have done exactly what get’s a lot of people in trouble…and that is I felt so good, I stopped doing the things that keep me from having break-through pain and was living life like I do not have Migraine disease. And damn that felt awesome for the last week! Not to have to worry about the maintenance my life takes just to have a some-what of a normal day (normal for me). Looking back on this past week, I went about my business if I was not sick at all and f&*k it has felt great! I have not worn Celafy in a week, only have done yoga once in the last two weeks, have not been meditating intentionally (although I’ve been writing and creating a lot recently and that is a form of meditation for me) and have not been sleeping well at all.
I do have a support system, here in AZ and back home in MI. I lack support from 2 of the most important people in my life, or rather they are tired of supporting me (it has been 11 years for peets-sake, I sort of get it). My Brother does not ask how I am feeling. I don’t even tell my family when I am having an episode much less when I have to the hospital. They have no idea how sick I am, how many down days I have and how often I have to seek urgent medical care. They are men and perhaps they can’t be bothered. My Brother pretty much told me he “could not be on this roller coaster with me”…sad but true. Thinking back I am really hurt he said that to me. That conversation broke my heart. That was 1.5 years ago and I’ve not said anything about my migraines since. My Dad, his wife, and my brother and his family came to visit last year and my conversations with my Brother were very shallow like or I guess you could call it “small talk”. I feel so far away from my Brother. We are very different and I hurt him when I moved out west when he was 18. Our Mother had recently passed and I think he felt abandoned. So there’s that.
My BFF is sick with alcoholism. And I feel like I am giving and giving. Yes, she is a great person and I love her like a sister, but she has a disease she does not want to cure. Lots of drama and I find myself carrying her secret and making excuses for her when she behaves irrationally or stupidly. Her choices have led me to develop space between us and I have made new friends who have values and likes similar to mine. I needed too to bring joy into my life.
I have lost a few of my close friends because they either can’t handle loving me when once after I got sick than did not get better or have moved on because I am not on the same page (I am referring to income mostly) nor do I have the connections or even cool stories about my old career anymore. Or they don’t agree with the medications I am taking…it’s an endless list. My friend told me I was using “drugs” to mask my pain so why should it be any different from her using alcohol to soothe hers…but sadly she is a full-blown, life falling apart, about to hit rock bottom, alcoholic and it kills me to see her like this. I don’t particularly like smoking medical cannabis. I like it because it has taken my pain patch doses down from 275 mcgs-50 mcg to date since I started smoking the flower. I have gone off the patch before and my pain is quickly there to show it’s ugly face. I don’t like how it makes me feel (sometimes like a Zombie and I can get silly). Medical cannabis compliments my medical and alternative care routine that I and my doctors have all agreed on and have prescribed. This medication is helping me feel less stressed and have fewer episodes and also have less headache-migraine pain. Medical Cannabis helps to keep me out of the emergency room.
Have you lost people you cared about or thought they’d be there for you or you thought they were a good friend,..then one day…poof…they are not in your life as often, then even less and less?
Any disease is hard for an outsider to understand much yet be around. It scares people about the possibilities of what can happen to them. Some people are confused and will need help as to how to help you. Explain to your tribe how you’d like to be treated when you are ill and how to support you…even if that means them leaving you alone. They need to know how to help or else they will feel helpless and will create distance from you.
“When someone is ill you feel sorry for them. But we’re all busy,” Dr. Feinberg says. “We say we care and things like that but the reality is, except for our immediate family, we don’t want to be reminded of our own mortality.” Source health.com
Migraines are not an aging disease, it attacks people of all ages in various degrees. You don’t get older and get migraines unless you do. And God be with you if you do. My point being, you can get sick with chronic migraines at any age. No one is protected a100%.
I wonder how many people I have become acquaintances with or I’ve met a friend of a friend and have wanted to get to know that person more, have not been interested in being my friend due to me having a chronic disease…
On the other hand, I do have much support in my life and I know I am very lucky. I am not wealthy money speaking, but I have a wealthy life including an amazingly awesome husband and a well trained cuddly soft doggy, both bring me comfort and support. And I love where I live.
My clients and friends and some of my family are all always there for me,…without judgment. People share with me an article they read that could be helpful to migraineurs or a new drug that helped a migraineur they know or a new technique or therapy. This could happen a few times a week to once every couple of weeks and to be CLEAR…I am grateful for everyone’s input and suggestions or sharing their stories with me. I feel very loved. 🙂
Who do you desire support from the most? Is it possible for them to give you what you need? Can you make revisions of your requests if needed, could you spread out the support you need and get it from several people, so it’s not on all one person? A church or religious or spiritual organization, specialized groups (card clubs, book clubs, hike with friends who are on your level) are great ways to get involved with the people in your community and meet some nice supportive friends. Usually, people want to help and groups want to help. I participate in online bulletins and blogs for migraineurs to talk to each other, no matter the location. I also attend a church and a yoga class that is very supportive and it’s social time which his very important for people with an invisible disease. Always share your experience so others can learn from it, good or bad, we all need help and we should be open to that. I listen to stories and read stories of other’s sufferings and people’s success with chronic disease, especially those with migraines.
I am not grateful for how some of my family is still punishing me from moving away when I was twenty-two (24 years ago). As I said above, my Mother passed and she was loved by so many. She was an Angel and surely is one after death, wherever she may be. When I moved away it was another loss for my family, quickly after she passed. I moved to Colorado where my BFF lives and she had also just lost her Mom. I moved in with her and her fiancé and we all supported each other dealing with grief. I needed to get away from my family which leaves me feeling g overwhelmed. I felt immense guilt about that leaving but I was figuring out who I wanted to be and also trying to meet my own needs..trying to live and heal, where I felt the best. I think I still have a lot of guilt. But I needed to go where I could grow, plant roots and create a life for myself as a young woman. I moved back to Arizona about a year later and have been here for 19 years. I found my peace here and I very much enjoyed backpacking in the backcountry or finding new adventures and experiences. I knew I needed to be in AZ, I could/can feel it in my heart and soul. This place is beautiful…far from what Detroit could offer.
I am so glad I traveled and took risks in my youth because I am restricted now. It’s too late for anyone to do the things they love and if it doesn’t happen perfectly, as you play it out in your head, it can be uniquely perfect for you! You have the power to be who you want to be, be creative,… be British for a day and have an accent (I have done this and it’s great fun!).
We lose people throughout life. There’s that saying…friends are for reasons, seasons or for a lifetime. Remember that …it’s not always about you and what you did wrong. And changes like this to happen in our lives on the regular.
I found that my tribe (my supportive friends and family) better supported me once they understood my limitations, and it is truly imperative to tell your support group what you need when you’re in chronic pain. Tell them what type of support you need. Be clear and sincere that “this” is what you need. “People want to help, but when it comes to the relationship between the non-sick and sick can divide you if the non-sick is confused or even afraid of knowing someone with a chronic illness.” Dr. Feinberg says. Source Health.com
My friends and I plan things to do earlier in the day because they understand I run out of energy early in the day. They have no problem with that. They know I am asleep around 2:00 p.m. so they don’t call, and I am grateful for that. They know I can’t go to loud places and I am afraid of sunlight (I love the sun and how it makes me feel, but only for a short time). We will go for morning hikes and walks, meet for coffee, turbo shop at thrift stores, we create things and do projects such as Vision Boards or setting goals and creating accountability. They don’t expect more than I can handle.
“Many people with chronic pain, myself included, look to others for validation and understanding,” says Rebecca Rengo, 52, a St. Charles, Mo., resident who suffers from several pain conditions, including fibromyalgia, and is the author of Beyond Chronic Pain. Source Health.com
Most people are caring and giving but if they are not sick they cannot understand what it is like to be chronically ill. It takes a lot of energy to get people to understand and that is very tiring. If you don’t have the support you need from others, turn that around and give the support you need to yourself! Give yourself credit, validation, support, empathy, and strength. Hug yourself and tell yourself “I love myself” Be your own cheerleader (I am always cheering myself on!).
Be kind to yourself, find your tribe. Invisible illness does not have to be isolating.
Be the best you, you can be and you will be richly respected…we all can be someone who seeks opportunity, remains joy-full, fighting for love and life and start living life on YOUR TERMS!
Thank you for sharing this sacred space with me.
With love and care for all those suffering…
Note* I usually post my new blog entries every Tuesday/Wednesday, so I apologize it’s Friday and I am just getting this one out. I was a busy week but I will focus on being consistent. :
Note* I usually post my new blog entries every Tuesday/Wednesday, so I apologize it’s Friday and I am just getting this one out. It was a busy week but I will focus on being consistent. 🙂
How could I forget to mention two of my favorite and recommended natural remedies to help decrease and manage my migraine symptoms….
Magnesium-critical for head pain management. I take 400 mg, every morning, without food. (Read directions on your bottle).
2. Medical Marijuana— I smoke medical marijuana every afternoon and evening. It is legal in AZ, but not recreationally.
Cannabis has allowed me to drop my pain patch dosage from 225 mcg to 50 mcg. No, I am not kidding! It has been a miracle in my life. It not only cut my dosage of pain meds, smoking the cannabis is the best way for me and it immediately calms my brain and relaxes me. This helps to manage and lower my stress levels, each day. When I smoke in the afternoon, I know I will be ok and then when I smoke in the evening, I know I will probably not wake up with break through pain the next morning. When I am in migraine state, cannabis helps to lower or rather mask the pain. The pain is still there but it’s in the background and does not bother me as much. I can sleep this way.
I have headaches every day and when the pain breaks through my medications-that’s what I call a migraine and I usually end up in the ER. I have migraines every day.
Cannabis makes me feel chill, which is huge relief from the anxiousness and non-stop chatter that is continuous in my brain. Replaying conversations, dreaming and thinking out loud, new ideas and creativity, new desires and wants, new needs, I want this or that and must get working to get it, regret, shame, guilt,…it all is on repeat in my head and it turns into a lot of headache pain.
I go to sleep after I smoke. I like flower and the kind that makes you feel chill and sleepy (Indica). Sleep is a migraineurs greatest tool. I do not drive or really even go out after I’ve smoked. I do not party-I gave that up when I got sick. I rarely drink and I do not use my cannabis as a “party drug” ever. Never. I do not abuse it and I don’t feel I need it all the time, only after my day is done. I do not smoke while working, driving or in the morning (unless I am having an episode and I need to be in bed all day). I do feel dependent on the drug, but not addicted. I am dependent on cannabis simply because it works so well so me. It is one of my greatest pain management drugs and also a prevention drug. Because it relaxes me so, it helps to decrease my episodes and thus ER visits.
Cannabis has been a life saver to me.
Everyone’s needs are different. Some may prefer the cannabis type that gives you energy (Sativa), which most people take during the day to “get through the day” and I get that. People use cannabis for all sorts of medical conditions.
If you think it could help you-go try it! Get your license, or drive to a legal state to get your meds. (Be safe).
The next time you see a petition to make cannabis legal or even to make medical marijuana legal…please think of how this drug/medication has helped so many. Please help by signing the petition. It could be a life-saver for you someday and to many others.
Really, think about that.
I hope these 2 additional natural remedies are helpful to you!
Migraines are a common problem seen in doctor offices or the ER. They occur from changes in the brain and the blood vessels surrounding it.
Migraine treatment can include natural or home remedies, over-the-counter drugs, and prescription medications used to prevent or subside the migraine headache pain.
Migraines are not the same as ‘regular’ headaches, Nor is cluster headaches, sinus or tension headaches.
If you have a migraine and are trying to figure out what type you have- read below. Or else scroll below to My Natural Remedies.
Migraine headache, on average, last 4-72 hours and can occur from daily to less than one a year. Common Migraine, also called absence migraine, accounts for 80% of all migraines. There is no “aura” with a common migraine. Classic Migraine headache, which is with an “aura” also called ‘migraine with aura’, experience an aura or visual disturbance before as a symptom that the migraine headache is coming on. Classic migraines are much more severe than common migraines. Silent or Acephalgic Migraine headache is migraine without head pain, but with aura and other visual disturbances and nausea, photophobic (light sensitivity) and phono phonic (noise disturbance) can accompany the aura. Hemiplegic Migraine is where you feel weakness on one side of the body, loss of sensation, or feeling on ‘pins and needles’. Head pain may not be severe. A Retinal Migraine is a migraine that is accompanied by vision loss in one eye. The loss can for a few hours to months. It is usually reversible but this is a sign of a more serious medical issue and if you have this you should seek care and see your doctor. A Chronic Migraine is a migraine that lasts for more than 72 hours and 15 days per month. A Status or Intractable migraine is especially severe and last beyond 72 hours. Emergency room visits and 1-3 day hospital stays (to manage pain and nausea) are common for stays migraine. Status migraines affect less than 1% of people with migraines.
I have chronic, status migraines…Lucky F&*cking me.
My Natural Remedies and Therapies
After years of being on so many medications, all sorts, every kind in my blood stream and it became flooded. My brain has changed, my memory is poor and it can be hard for me to focus. As well as prescribed meds, I have developed a repituar of natural remedies and therapies I can do that will help in some way. I do a lot of these, a lot of time, and others not so often. I feel that the natural remedies I use, could help with decreasing most types of chronic pain. You can use these ideas and customize them in a way that works best for you.
Some of the natural remedies that work for me are:
– Turmeric supplement- 1200 mg per day (great for any inflammation in the body)
-Vitamin B2- 400 mg (this is suppose to be a big help in reducing migraine pain)
Vitamin D 1,000 IU (keeps me from feeling low or stressed)
Sun exposure (I try and get 20 min of sun a day, while not wearing sunblock. Sunblock will mostly prevent the absorption of Vitamin D)
Aromatherapy (I use a lavender blend and a Stress relaxing blend which are both very healing. You can either inhale by sniffing or putting it on your upper lip or oils can be taken orally, but not all types are edible so do your research)
Drinking stress reducing tea (I sip on Chamomile, Ginger (a natural pain reliever), Tension Tamer and Lavender tea’s…this mix I drink 2-3 a day)
Healthy eating (I consistently try and eat organic, non-GMO, un-processed food, fresh fruits and veggies, wild caught fish high in Omega’s, organic chicken and eggs, nuts and grains. I don’t eat dairy, sugar and very little gluten.
I count chemicals, not calories
I use all natural personal products (deoderant, shampoo, toothpaste, soap, lotion, etc.)
I use only non-toxic, natural cleaning products and laundry detergant
I make a Flax seed cocktail to help with constipation, a side effect from pain medications. (recipe for a flax seed cocktail: 2 Tablespoons of ground flaxseed mixed in 8 ounces of water, stir quickly, drink quickly and follow up with another 8 oz of temped water. Do this as you first drink in the morning. Store ground flax seed in the refrigerator)
I have a healthy bed time wind-down routine. (You should always turn off electronics 1 hour before bedtime. I get in my pj’s, have tea, smell and apply aromatherapy, will write a bit and put on my Celfay device which is numbing and helps me to fall asleep)
I go to sleep at night and wake in the morning, the same time every day.
I practice yoga 2-3 times a week (have gained 3/4 of an inch in height in just 6 months, from doing yoga. Yoga provides me with over all relaxation and clarity and my brains likes learning new things. It is also social which is important)
I practice deep breathing exercises daily
I do tapping on myself (repeating out-loud “I love and accept myself”)
I practice Eco-therapy (being in nature as much as possible-I love long walks or hikes, enjoying the views and animals)
Being active (If I am having a good day then I try and move all day and this can build the feel good hormones we have)
Listening to Affirmations (I listen and repeat ‘Health, Wealth and Lifestyle affirmations’ – available on youtube.com or other apps)
I put myself in peaceful soul enriching situations (I go to various church’s to pray, walk the Labyrinth path to pray and set goals, or I’ll visit the Buddhist Stupa to walk and think. Absorbing the positive energy in these places is restorative)
I tie jeans around my head (when I am having a lot of pain I will wrap a pair of thick jeans around my head and tie the legs tightly at my forehead and this creates pressure, which is an aversion to the migraine head pain)
I wear earplugs out in public (when I know I am going to be somewhere noisy I’ll wear my earplugs so the noise does not give me a migraine)
I wear hats and sun glasses to keep the bright light away from my eyes.
I blackout my house (I put cardboard on my windows or use black out curtains to have a dark house)
I where a eye mask to bed (this helps me to not wake up as much and it helps to keep me asleep longer in the morning light)
I meditate in stillness and while moving (I ask the Universe “what is it I need to know” and answers come. I love to mediate while walking or stretching)
Celafy. -This is a device made for specifically for migraine suffers. (There is an adhesive you put on your forehead and connect a small electronic device with electrodes that manipulate nerves in your head. This device has been proven to very helpful to me)
Sleep or rest (I rest as much as I can and even put rest time in my calendar. When I see it there, that’s what I do; I rest as it’s so critical to decreasing migraine break pain and symptoms)
Massage (specifically on neck, shoulders and back)
Energy healing therapies such as Reiki and Acupuncture
Hydration (I shoot for 3 liters a day or 100 ounces. I also drink tea, coffee and sometimes coconut water because it’s great for helping dehydration)
Ici (an ice pack on my forehead)
*** Lifestyle change*** (this has significantly changed my life for the better, 100%)
I have had Botox therapy injected into my head and neck and I think that worked pretty well.
None of the ‘preventative’ subscription medications for work me, but Celafy does the trick (it is a device not a medication). celafy.com
These natural remedies I have learned, mostly on my own. If you have tips to help pain and symptoms, you should share them in the comments section. It is important for us to share things that help or or not because most often migraneurs suffer in silence and so much is not-known about migraine disease or ways to treat it. Please share.
All migraines have similar symptoms such as:
-phonophobia or sensitivity to sounds
-photophobia or sensitivity to light
-hyperosmia or a heightened sense of smell
-changes in Vision or aura
Some other symptoms a migraineur may feel during a migraine include:
-Ice pick in the head
-Neck pain and stiffness
Some of the Prodrome symptoms- those that come before the migraine attack-include:
-Fatigue and stiffness all over the body
-Difficulty speaking and reading
What symptoms can you feel after the head pain is relieved or has stopped- or called Postdrome symptoms?
-Inability to concentrate
-Lack of comprehension
My longest migraine lasted 3 months…I’ll never forget…it started just before my birthday on September 10th and lasted until after Thanksgiving. I missed the holiday celebrations that year but mostly just missed being with my family. For me, after my head pain was gone, I had Postdrome symptoms or what I like to call the ‘recovery symptoms’ for a full month…then life started to go back to my normal life. Well, normal redefined.
I am pretty isolated here where I live, in Northern AZ. I live in beautiful Sedona AZ however it is 2.5 hours from Phoenix which is where my doctors are and most of the support groups and classes. We have no local news, so I do not hear about trials or see ads for new meds, support groups or here from local activist. I also have commercial free TV, as the commercials were driving me nuts! I’ve had to be creative and learn a lot on my own. Shit- it’s only been since I’ve started this blog that I am now opening up channels of learning from others. For years I was in the dark; literally.
If you have migraines or chronic pain, I encourage you to seek out others like you. Join a support group or create your own with a couple of people who can relate to what you are going through. Join with those who have similar struggles. It is important to share information because you never know what could help someone else cope, even if it did not work for you. Share your tips and tricks. Having a support group will help provide you will acceptance of your disease. You know, you are not alone and you will have people to call on when you need help. Ask yourself “who do I most desire support from?” And create that relationship. Asking for support is often the only thing you need to say..people naturally want to help (well, most people, but not all).
I would have to say that I was in isolation. One of the reasons I am so excited to write this blog is because it puts me in touch with the outside world. I feel like my story matters and that my life can be an experience that others can learn from. I have a great life and I am very fulfilled. My disease does not run me, I manage my disease with lifestyle solutions. (I wrote about lifestyle change and how it has worked for me, in my last blog post).
I am in the 1% of migraine sufferers with the worst type of migraines….and I am in control of my life. I am happy with all that I’ve been able to do, while being sick.
Celebrate your small steps forward…and sometimes you have to take 3 steps back. BUT, keep moving forward and discovering all you can about yourself. Be creative and think outside of the box. YOU are stronger than you think you are and YOU are in control.
Your life is what you make of it. Find joy in things you wouldn’t normally notice.
Do a pleasurable thing for yourself each day…enrich who you are. People who have a passion and engage in pleasure each day are less stressed and have happier, more content lives.
I learned this long ago and it has worked for me.
I hope today’s post was helpful in someway to you. As always, thank you for sharing this space with me.
I write with love and care for all those suffering from chronic pain.
I have tried A LOT of different things to manage my migraine disease. For the first 5 years of being sick it seemed that nothing helped. I had tried all the medications and med cocktails…steroids, “Abort” pills, preventables, pain meds, supplements, drugs for other illnesses that may have a side effect of decreasing head pain and Botox. I tired acupuncture, massage, Reiki, had a Psychic clear any negative energy from myself and my family and I’ve done energy work. I had Chiropractic care, tried Chinese herbs, aromatherapy, I would pressure wrap my head and of coarse I went no where without my ice bag. I had a bag always with me containing all sorts of medications to take when the pain came on; all mentioned above. They came with me everywhere…cling cling of the pills as I walked.
And….Nothing helped. The ONLY thing that would help me were strong, strong narcotics. After being ill and trying all these techniques, I’d start with hope, and as each method failed me, I became depressed and discouraged. At no time did I ever want to give up trying but for a while I stopped trying and decided to just let the pain meds work and see how I do….The meds worked well as much as they could and I on the other hand could barely function. For years I slurred my words, could not drive or work and my behavior was not very becoming. I was drugged to live and lived to be drugged. When in the rest room I would fall asleep on the toilet and after I am not out of the bathroom for a bit, my husband will come check on me. And in public restrooms…that posed a bigger problem. A few times James caught me asleep as I was laying over the sink with my hands under the running water. That was enough of that.
The doctors have always told me that my migraines are caused from stress…well OK, now what?
I looked at my life and new I had to decrease my stress and live peacefully, or find my “Zen space”.
I made a plan to do only what is a priority to me. Frankly, I have no time for extra’s. I needed a daily plan for me to follow as best I could so that I could prevent a migraine flare up. And that’s where lifestyle changes came into my life.
My lifestyle changes are quite possibly the most profound impact I’ve had on decreasing the amount of episodes I was having (or having break through pain). Once I started making changes it was like an epiphany. I had heard it from professionals, as back then “lifestyle” was not addressed like it is today. For me, when I do not rest and move too quickly; rush or have too much to do or I can’t stop my brain from twirling on repeat and even too much stimulation,…could send me to the ER in screaming head pain. I knew I needed more rest. I knew I could not rush each day or any day, any longer.
I needed to be and remain calm and slow down. I had to stop the stressors of living in such a modern century society where the hustle and bustle mindset was creating stress in my life. I also knew I had to make my eating and activity more of a priority. All of this could help me feel better… and all of this needed to change…and at first that was frightening to me.
Ultimately, after a few years of becoming aware and learning what I needed, I had to change my career, work different hours, I deleted negative relationships, I added new ones that were positive and inspiring, I made my eating and knowing when and what to eat and being prepared became top priority and increased my physical activity by practicing Eco-therapy, yoga, strength training and spiritual practices. I will go walk the local Labyrinth path or visit and pray at the Buddhist Stupa. I don’t watch violent tv shows or movies and listen to calming and soothing music. Yes, I still “rock out” to music and get my groove on, but only when I feel the urge.
I kept thinking how can I do this? What will life be for me if I change so much? Who will I become? Will I still like myself? Will my husband still love me? What about my friends…what will other’s think? These thoughts ran through my head. WHO WILL I BE with a new lifestyle? What will my daily life look like?…
Well,…it came down to; I either do the work to change my lifestyle to enable better health or stay in the miserable place I was. I was broken, but beautiful. If you know me, you know I do not give up or in give in easily. I have always been a go-getter. In a time of desperation, this was my greatest test and fight yet. I was broken but still had fight within me. I knew I had to change things or I would end up taking my life.
Slowly,…I started to make changes. It took me several years to get to the point where I am today and I am still making changes. I know that will always be the case. AND that’s OK.
Some of the changes I made are revealed in my statements below. This is who I am now and I am proud of my words. It took love, courage, acceptance, and forgiveness for me to change my lifestyle 180 degrees.
-I now sleep near 16 hours a day. AND I’ve learned to be OK with that.
-My day ends between by 1:00 pm and 3:00 pm. AND I’ve learned to be OK with that.
-I am now sick to my stomach most of the time. AND I am OK with that. (ginger tea and medical cannabis help a lot)
-I have a horrible short-term memory; a side effect of the meds I’ve been on for years. AND I am OK with that. (people remind me)
-I now work part-time. AND I’ve learned to be OK with that.
-I don’t make the money I use to make. AND I am OK with that.
-I have spent all my savings and had to file for Bankruptcy because of the cost of my medical bills. And I am OK with that.
-I cannot work-out as hard anymore. AND I am OK with that. (I do different activities now)
-I am pudgy. AND I am OK with that. (I love my curves)
-I don’t see my friends or family as much. AND I am OK with that. (we visit via phone calls and texts)
-I have to always be prepared with meds, earplugs, eye masks, a pair of jeans to use as a pressure wrap, CBD cream, aromatherapy and anything else I use to treat a migraine and bring this with me everywhere I go. I always have to know where the closest hospital is. AND I am OK with this.
-I may not be able to achieve all I want to achieve. AND I am OK with that.
-Some of my dreams will have to be revised. AND I am OK with that.
-My life will not be what I had planned for myself. AND I am OK with that. (I am making, what I feel are funner plans!)
-I am different now; then who I use to be. AND I am OK with this.
*I believe in myself and I will persevere….THIS I KNOW!!!
I am simply trying to put a positive spin on everything. Remaining positive, optimistic, and having hope is a huge part of my healing and I think it would be for most people. I may not go back to school to get my master’s in Psychology (a dream of mine) but I can continue to invest in myself by taking classes that enrich all parts of my life. That’s what I needed…balance and fulfillment in all areas of my life.
I try, as much as I can, to not get involved with the distractions that life can swing our way.
In this modern world, 75%-90%, of all doctor visits are from stress related conditions and disease. Stress affects 4 out of 5 people in the US. Stress can cause all sorts of debilitating and terminal disease that are common from too much stress. Some of these include; heart disease, cancer, stroke, lower respiratory disease and accidents…to name a few.
This is serious. Have you suffered from stress or a disease related to stress? If so, I can tell you that you might need to change your lifestyle to enable LESS STRESS for yourself. If you don’t do this you could suffer from major disease not to mention anxiety, panic attacks and insomnia can be side effects of stress. And if you can relate to my story-get help and do the work to save yourself.
I developed a lifestyle that meets my basic needs and this provides me with a foundation to build from. My foundation is the healthy soil and my attitude is the water that my dreams will grow beautifully tall from and reach the sky. Like a beautiful old Redwood trees or Sunflowers.
You must have a lifestyle that fills your needs. Rearrange, change your work and home schedules to better support your needs, be creative and make sure you are investing in yourself and your priorities. If we don’t know our priorities or if they are not clear then we don’t become aware of what we actually need and what is important in your life. Or rather our true needs will not be met. We will just keep marching forward with upset faces..doing the only thing we know to do…Stress out!
Stop the chaos. Focus on you and your needs. Fight for what you need and want. It’s your life…make it the best it can be!
We live in a highly populated tourist area, in fact our town get’s about 5 million visitors a year. That’s a whole lot for a city that has just under 20,000 residents, 19.2 miles of land which is mostly Red Rock country and National Forest. Sedona is more beautiful to me than any other site I’ve seen in my travels. The gorgeous Red Rocks in Sedona bring me much needed calm. Wether I am staring at them or living within them, it is here I left back home for, 23 years ago
(I still get the “guilt trip” for moving cross country.)
Twenty-three years later and Sedona’s Red Rocks are what people come from all over the world to see. It is the most popular it’s ever been. Most say it’s better then seeing the Grand Canyon (GC), as when your at the Grand Canyon you can look down, but you cannot clearly make out the rocks unless you hike down into it. The Canyon becomes more alive the further you decent. The bright red rocks lite by the sun, the clouds that shadow over them or experience millions of years of rock formations.
Down there you can imagine yourself as an early dweller, a pioneer, researching and playing in the GC before it became what it is today. When I am down there that is how I feel. It is very quite below the rim. This is my Sanctuary, the Grand Canyon, and one of my favorite things to do, one of my favorite places to be. Being in the (GC) and in the inner gorge is like being in the middle of no where. It’s exactly what you’d fear in your nightmares; being alone, with no one or nothing around. Almost as if you are the pin dropped in the hay stack…good luck finding your body should something go wrong. There are popular hikes, like in the corridor trails, then hikes for those that like more challenges (and less crowds) such as having a dry camp or carrying your own water; no bathrooms and there are zero showers when camping down there. It’s likely you will not see anyone while hiking the other trails. The GC is not only gorgeous and filled with millions of years of history, if you hike on the less populated trails, there is no one but you out there! It can be freaky but I feel elated and free. I am free to roam anywhere, smell the fresh air and take in the geography and great weather. I swim in the rivers and creeks and lay relaxing on the beach. I let the warmth of the sun radiate into my body and warm my skin. It can be comfortable in the elements. I read, think out-loud, plan goals and fight the many challenges of being down in the Inner Gorge.
When I am in the Grand Canyon, I walk miles and miles and it brings me internal peace, it is like no other feeling I’ve ever had. No where to be, no time frame, just walking…step after step after step. I just keep going, sort of like I keep fighting my disease, each and every day. Or rather not letting it get me down.
When hiking I feel light, in body and mind. This feeling I compare to eating the Italian dessert Cannolis that were homemade by my family every Christmas season, when I was young.
I feel pleasure in so many ways when I am in the GC. It is where I feel at home, enjoying the moments that come and getting to know more about myself.
Now you may be wondering…what do I do, out in the middle of the no where, if I get a migraine? Right? The answer is I have never had a migraine while in the Grand Canyon. I have been in the emergency room, 10 hours before, and as soon as I hit the trail and breathe the fresh air,..I am fine. I may have to take a few meds but I have never had a debilitating migraine while hiking there. So many dangers but such great rewards, if you can navigate them. IF I had to guess, I’d say I’ve been in the hospital, the day before a trip to the GC, near 7 times. Something in me shines like laser beam when I am down in the Grand Canyon and healing begins.
Within the chaos of life and certainly in my own mind, I crave peace….Like I’ve never been satisfied. It’s a thirst I have every minute of every day…for my mind to slow down, for it to be still. Well, I find that peace in open spaces; the desert, in a forest or swimming in the ocean. I cannot feel closed in. Wow..I am just thinking of my chaotic filled life before I had migraines and how I thrived on the chaos, excitement, adrenaline filled experiences, the bright lights of America’s greatest cities, and living in urban areas clustered with shopping, Art and University. I do love all that,… but I can no longer live in it.
Sedona, has gotten so big and just nuts with people and traffic; that it now causes me harm to be here. A very sad moment for myself as Sedona was and probably still my favorite place in the World.
We are leaving Sedona and moving just outside of Sedona where we will have a few acres. We are currently building a “mini-home” and it will be ready for move-in in December. In a few weeks we will be moving onto the property for good, but since our home will not be ready we will be living in a family member’s travel trailer for 2 months. When it’s all said and done, we will have made 4 moves this year…between May-December.
It’s ok. And actually I am sort of having fun with this adventure! I have cultivated a feeling of “OK, this is only temporary, enjoy yourself and overcome the challenges, with grace and ease”. I had foot surgery during these moves, I’ve had migraines so bad that I’ve need to go to the emergency room several times. Last week I had a panic attack that I am. Now feeling relief from…God those are scary! But I am OK.
Fortunately, I have found that as long as I have my medication and natural remedies, then I can survive and thrive in any situation. My doctors recognize the severity of my illness and as I don’t want to lay in bed all day, screaming in pain and not having a life…they can empathize and they want to see my succeed. I’ve been going to the same emergency room for the last 11 years. They know me now and they see me suffer and it affects them (probably because they see me so often and know I am the real deal). I am suffering from debilitating pain and pleading for mercy. So I have always had the medications I needed to have to have, what I would consider a decent life.
I know how lucky I am too have found the right doctors for myself and after years of seeing them for care they are invested in my wellbeing. I hear from so many people how they cannot get the medications they need and that they are stuck in bed all day. I can relate, I was there in the beginning when I first got sick. No doctor wanted to touch me because they knew a heavy amount of pain medication would be required to help me. I had to go to Phoenix to find my doctors (2 hours south). My migraine doctor asked me to go to rehab to get the drugs out of my system to see if I was having true migraines or if I was having re-bound headaches from the pain meds…which can be worse as you know! UGH! I was released in 72 hours. The doctor at the rehab facility called my migraine specialist and said that she needed to make room for me to see her “today” because I had been off my meds for 72 hours and I felt like I was dying.
Early on, I had spent time in two different hospitals. They each ran all sorts of tests and therapies to get to the bottom of my pain. They were switching out pain medication cocktails every 6-8 hours because nothing seemed to work. Those were horrible days…God to think back and to think how I’ve come. My migraines are still as severe but I have created a lifestyle around them that allow me to have a life that is fulfilling for me. Oh…and my diagnosis, Chronic Migraine Disease without Aura, cause is Stress.
Years ago, I had to stomach the realization that I will no longer be able to do certain things, things I had always hoped to do…I had to change my goals, change my friends, change my family and had to come up with a new career. I am on social security disability, which has been a blessings all these years. Yes, thank you God. But I need to make more than what they give me. I can only work part time and if I make to much money than I could lose my benefits and my medical insurance. Its pretty tricky but I’ve got it all figured out now.
Find your sanctuary…find a challenge that you feel confident you can achieve. Believe in your self. Be curious. Be safe. Hire experts to help you or ask someone who has experience, if needed.
What brings me peace is very different then what others may wish for. Stop suffering and find something that makes you SMILE… You are stronger than you think you are…always and in every circumstance. What excites you? No really, truly what do you want in you life that will bring you joy? I am always asking myself..”how does this make me feel or does it bring me joy”? If not I get rid of it and if yes, then I keep it. This can be related to friends, family, hobbies, your work or anything else that can strip you of joy. PUSH THE DELETE BUTTON on things in your life that do not bring you joy.
-What choices are you making?
-Do they serve you or are they know longer serving you and your life?
We’ve got to roll with the punches (as they say) with our lives and make changes, perhaps day to day.
I encourage you to find what brings you joy and go after it.
For me, I am going back to the Grand Canyon to backpack it next year. I am counting the days. For now, I look up and thank my God for all I am able to do. He helps me focus on what I can do…not what I cannot. And I have found that there is plenty I still can do!
AND SO CAN YOU!
Note* my last post was about the panic attack I started last week and is still somewhat with me. I have discovered that sipping on chamomile tea during the day, does helps to keep me calm and it also helps to quite my brain! I chose natural options first and this one seems to work. I fill up a large coffee tumbler with 2-chamomile tea bags, 1-ginger tea bag (a natural pain reliever) and 1-green tea. I drink 2 of these concoctions a day. And at night? Sleepy time tea can be very helpful as well. I hope this helps.