TOO MANY YEARS.........

By cancan

5 min read

Finally, I am writing my 'almost' 72 year old story, only Miss Slevin WROTE my story, almost to the "nth"...!

After hesitating, and reading so many other stories for quite some time, mine was a copy of most of them, from one end to the other!

My migraine experiences were too many and like so many other migraineurs....I, too, could write a book.....(with punctuation help) for which I am embarrassed to not do well! (Maybe that is the reason I have taken so long to write "my story"...!). At age 74, I still suffer, even at this very moment.

I recently did something my Primary Physician agreed with, I stopped all other meds that I was taking, just to see if any side effects might be causing the 'break through' migraines that have been unbearable recently, which happen at least two to three times a week or more often. Unbelievably, the 'break throughs' are down to maybe...one a week. I have come to the conclusion, thus far, it could be the Levothyroxine I was taking for slightly low thyroid, headaches are just one side effect of that med, but maybe not too as I have a break through today, possibly caused by some sugared popcorn I had yesterday, sugar could be just one of my "triggers." But I take narcotics also, wish I didn't have to but they are my life saver...for the past 47 years. That is hard to divulge that but they did give me a life. I do know at times I get rebound headaches, a chance I must take!

When I started taking the narcotics back in 1968 I did not know there was a chance of dependency, my doctor took them also since he was a strong migraine sufferer also. He told me to never be without them....I never was.

I started back then with just one or two pills a month...I was employed for 35 years, raised two children, which by the way I had a migraine while delivering both...and have been married 54 years. I have a fully supportive husband, I am so fortunate!!! We met our first year in high school, so he knew way back then about headaches, yet he stuck by me and still does!!! He is wonderful, as I have been sick so much all of my life in so many ways, other than migraines also.

But around year 1998 I began having them more often, it seems after I had broken my left arm. (An innocent accident while roller skating.). I was caregiver over the years to several relatives and friends. The last person was my "soul mate" girlfriend of 25 years, who passed away after a seven year struggle with breast cancer in 2004, I tried so hard to help her to live!!! I went into a depression, probably my seventh or so....those I took care of and watched over we're very close to me.

In 2003 I lost my doctor of 40 years due to bone cancer, another devastation!! What was I to do since over the years the FDA was starting to give us a hard time in getting our pain meds? It took me 3 years to find a doctor who understood headaches, although he called them "headaches", he wasn't sure they were migraines until a few months ago, my husband rushed me to his office while I was having a mild, aura migraine, stroke. I was having difficulty speaking and seeing. I asked him what was wrong with me, he told me...a serious migraine!!!! Since then he has taken action, I will have ANOTHER MRI on my neck and spine, he attended a Pain Clinic recently. I know I have spinal bulges and problem vertebrae....plus had a whip lash in 1973, have a deviated septum, fibromyalgia, trigeminal nerve damage, (I wear a mouth guard nightly) have nerve damage in the arm that was broken, sciatic nerve issues down both legs to my toes, carpel tunnel syndrome-both wrists...plus hereditary migraines....father, grandmother and a second cousin who had Epilepsy. That is a lot stacked up with having body pain and I think a lot of it contributes to my head pain and migraines!!!!

I was told at age 3 I was running around the house screaming and holding my head, all people saying I was a spoiled child! My mother knew different, she would calm me by rocking me in a chair and putting a cold cloth on my forehead, I would either go to sleep, waking up...just fine. Or I would vomit, then go to sleep, waking up just fine! I had a wonderful mother and dad who always took good care of my brother and I. As I got older, my dad would give me soda and water which would make me vomit, then I would go to sleep, waking a few hours later and all was well again!!! They could never figure out what was happening, nor could the doctor...this was back in the '40's. It was a struggle going to school all years, even had a migraine on my graduation night! I missed proms, cancelled boyfriend dates and different extra curricular activities and if I did go to whatever...I always had to go home early, with a sick headache, as we used to call them. I don't remember when headaches began to be called "migraines!".

There are so more incidents that I could write about re: migraines, but I know anyone on migraine.com has a lot to say too. I do not know how I survived all the pain in so many years except I did have those who supported me.....! I now have to have Cateracts removed, I am very frightened as all my migraines are in the eyes, feels like I have a "boulder"in the eye that is paining at the time. Actually, the whole side of my body is in pain that the migraine is on in my eye....not one spot on that side is without pain. I feel it is spine related. But between insurance companies and Neurologists who are unbelieving a person can have so many things wrong with them, possibly stemming from migraines....not many believe my complaints.
I went to two Pain Specialists who loaded me up with so much pain meds I did not think I would be able to quit all of it...but I did!!! I am now just on one, the same one I started on in 1968...it still works for me but I fight to keep it under control. I have had two surgeries within the past two years, been to the ER for migraines several times over the past few years....still they continue!!

At 74 years old, it is not easy, as the older one gets, the more pain that "pops" up here and there every day. I try to walk a lot, keep active with my little dog, and keep my house going with the help of my husband...don't know what I would do without him. AND migraine.com has been a Godsend! I have been on the Internet for years, asking Medical sites why we couldn't get help? Finally BIG things are happening and migraines are NOT JUST HEADACHES! Thanks to all who have pushed for help....and it was wonderful to join AHMA!!! And I pray for those younger ones coming behind me.. there will eventually be a cure, or at least, IMMEDIATE help when a migraine begins, so suffering will be much less than we experience today. Thank you...migraine.com

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Katie M. Golden Moderator
Cancan, You have an incredible story. The advances in medicine you have seen in your lifetime are incredible. But in another way it hasn't changed that much either, since you still find relief in the painkiller that you were taking in the '60s. I hope when I'm your age (I'm 32 now) I can say that there is a cure. You may be interested in a book written by famed neurologist Dr. Oliver Sacks. It's simply titled "Migraine." It was written in the '70s and updated again in the '90s. It's a very technical book and at times difficult to read, but it gives a history of Migraine. It was interesting to read about doctors and scientists studying the disease in the 1800s and there even being records of people suffering in the Dark Ages. Thank you for sharing your story. -Katie
cancan Member
Thanks for writing Katie, and I will definitely purchase the books you reccomended. It was very difficult to write the short version of my story....I was emotional at the writing, having a break-through migraine but hoping it would maybe give me relief to finally share my story, I think it did. But as I said, I too, could write a book telling of all the times that still are vivid in my brain for so many years ago, of so many horrible experiences i went through with head pain. And I neglected to say I did not start taking the narcotic med until after 25 years of suffering with "nothing" or no one to really help me...but my mother. My dad was there for me in my younger years and was sympathetic to me until he passed away in 2000 at age 88, my mom died in 1974, she was 63, she was my "headache Angel." Now I depend on my husband who is always there for me but is not particularly a "caregiver" like my parents were, they always knew just what to do for me to keep me calm and comfortable during "a pain over and in my eye". Even at my age of 74, almost 75....I miss their loving care. I have read so many books over the years, trying to figure out WHY.....WHY ME??? Sitting on the local Library floor, reading medical manuals as often as possible, this was before the Internet of course....never finding an answer until I got much older and realizing....I was a chosen one!!! Along with my grandmother, my aunt, my dad, and my 2nd cousin who had headaches and Epilepsy. Then I began to except the fact that it was hereditary, and so many different triggers that I would have to deal with! And now my daughter, and her first born daughter, my lovely 23 year old granddaughter must put up with them also. I could go on and on....but I do not like to admit or write that I've had to take strong meds to survive over the years. But my mother caught me trying to take my own life twice, (thank God she was there in time to save me)...and she realized that I am just one who cannot tolerate a lot of pain!! We visited doctor after doctor, even a Neurologist when I was young. And over the years many Neurolgists, only to hear them say, "I can't help you," or after an MRI, "you just have "white dots" over your forehead!!! Two doctors in my life finally understood this...and have saved my life with the meds. I journal the times I take the strong pills, how many, etc. and have done this for years, that is why I am "okay"...but if the FDA or Insurances ever says I can no longer have them....well, I don't know if I can handle that. Again, thank you, Katie. Just you writing has been a huge encouragement!!!!❤. Carolyn (cancan)
1. Katie M. Golden Moderator
 Carolyn, The challenges you've written about are incredibly personal and it takes a strong person to be able to say them out loud. I can imagine that just remembering the hard times and looking back on the ups and downs of the disease can take an emotional toll. For me, writing is a great way to unburden myself of the thoughts floating in my head. But I do hope that through this process you have found some semblance of healing. I know others will read your words and find comfort. This journey isn't easy and I'm glad you've had support along the way. Thank you so much for being a strong voice and sharing! -Katie