A history of suffering. And suffering still…
Maybe this will just help others realize that migraines are a fact and not a myth. I began with migraines around 13 yrs of age. I had just started menstruating and would get these “sick headaches” frequently. Eventually my mom said that they were migraines later. The nausea would be horrid as much as the pain was. She would give me Fioricet back then (this was 35 years ago) as she had a prescription. It did explain somewhat how she would lie down sometimes during the day and whip us good when we were not quiet. I can now understand that kind of pain response but that still does not excuse spanking a kid repeatedly just for being a kid. Kids are not quiet.
Later, a regular doctor took me seriously after I was married and moved out. The migraines decreased remarkably. Sadly though, he retired, and was replaced by a neurologist whose specialty was mostly sleep issues. Now, it is hard to sleep with migraines but he wasn’t as skilled in the treatment of them. Eventually, he moved to another practice further than I could drive and I was made to go to yet another neuro doctor. This time, the doctor didn’t not take me seriously. In fact, I was treated like I was making it all up. Needless to say, I had to go in search of a new migraine doctor.
I was recommended to who was supposedly a really really great doctor. Even though he was an hour away, I still tried him as the options were (and still are) severely limited in my location. I was treated like a neuro patient and he seemed to take me seriously, but I had the feeling that he really wasn’t. I mean, there was this “official” tiring thing of going through history every single time of the migraine and such and I understood that was important but accusing me of encountering my triggers every time? I had did that, journaled that, and learned what were my triggers and how to avoid them (food diary, I’m hypersensitive to temperature, light, sound, touch (now), etc.). I knew then and of course, I know my triggers well now. No pain meds were even given. I couldn’t understand that. The Maxalt and things to supposedly stop the headaches were so-called “good enough” by them. That was the biggest warning sign to me that they really didn’t understand pain.
So I tried a “big name” hospital here. The rescue treatment for migraines there? Steroids. Yeah, that was it. And I saw the neurologist once. After that, only the nurse practitioner who was supposed to be “one of the best NPs for migraine treatments”. Nope. I’ll be referring back to her later.
So, I ended up letting my primary care physician treat me. Cheaper obviously and they knew just as much as the more expensive “specialists” as far as my research in migraines told me. Yes, I have researched migraine and it’s pathophysiology and mechanics thoroughly. Yes, I do understand medical jargon completely (I have a Bachelor of Science in biology). I’m absolutely no dummy and I know when I’m being told a lie and when some doctor doesn’t know anything and is trying to just “blow smoke up my ‘rear end'”.
So, yes, I had “okay” insurance then. Then I had a horrid attack of sorts. I still have no clue what it was but it rendered me almost helpless. I had a horrid migraine that day. I did try to take the Maxalt and was on the Topomax religiously (side effects would be as bad as a migraine if I didn’t take that stupid Topomax correctly). That night I went to bed hoping that the Maxalt would work. It did not. I woke up with NO FEELING and NO STRENGTH in both my arms and my head was still aching.
So, now I was panicking. I was so scared and fearful that I did not think about going to the emergency room. I was stupidly scared of losing my job because I could not even carry a cup of water without dropping it (I dropped so many cups of water even carrying it with both hands that my floors were very clean!). In retrospect, I should have gone to the er; I wish I had done so.
Now began the real nightmare. I finally got the courage to try to go to the doctor. This time I decided (stupidly) to try the “big name” hospital again. The symptoms were: migraine (obviously), and complete numbness on the dorsal part of both forearms, severe weakness (couldn’t not hold anything over 3 lbs without using both hands or I’d drop it), a weird horrid pain sensation within 2″ of both arms and pain like you hit me hard with a hammer if you touched either arm.
The orthopedic part of that hospital said there was a definitive difference. They did a nerve test. Said, “nothing is wrong” for the verdict. (huh???!!!!!) Told me: “It’s all in your head; you’re making it up”. And I was given steroids again. I was also not being taken seriously. I complained and they made absolute complete excuses to back themselves up. Talk about treating a patient who is almost helpless (lucky I could barely drive!!!!! Not kidding!!!!!) in the most horrible way.
So, I had, well, of course, forced to look for another neurologist because the arm pain and weakness was not going away. Well, I was slowly gaining the strength back by doing my own therapies (like I said, I’m no spring pigeon to medical things). I eventually found one doctor but even with insurance, the copay was OVER A PAYCHECK in cost. Yes, the copay was I think around 300.00 to just consult. So I had to remake the appointment and save and scrape up money to see her. Yes, I ended up eating extremely next to nothing for a month (not good for someone suffering from chronic anemia—migraines aren’t the only thing wrong with me: arthritis, degenerative disc disease, neuromas in both feet, carpal tunnel in both wrists).
Okay, this singular neuro doc redid the tests that the big name hospital did except she wanted an MRI of my neck done and didn’t do the ortho strength tests. So she did find a definitive difference in the electrical signals from my neck to my arms. A significant difference she said. Also, the MRI showed pinched nerves and the middle stages of degenerative disc disease. So she found that I was telling the truth through real impartial science. She got me on a decent regiment but I was still stuck on that Topomax stuff. And she was super expensive to visit too. She ended up moving to a different hospital a long drive away. Story of my life, found an okay doctor, they move far away. So, I tried to go to a neuro doc she “highly recommended”.
Yeah, this one didn’t believe me at all whatsoever. In fact, this neuro doctor acted like I bothered him every time I saw him. He refused to do any testing or anything to try to improve my condition because of money. He was not willing to do any more than he had to because of greed it seemed. So, of course, since he absolutely began to not listen to me (and even got angry at me one time for no reason), I had to stop going because I didn’t want to pay for just him to rewrite the same prescription over and over without proper evaluations each time.
So, I had my regular GP handle my treatment. I also started have fainting episodes frequently too. My GP had me do a number of tiring tests including wearing a holter monitor for a month. Ended up with “idiopathic vasovagal syncope” as the diagnosis. However, she did not like the term “idiopathic” so much. She thought that my fainting spells were the result of my body handling too much of a high pain level for too long. Eventually, it would not be able to handle the pain, all the energy would be used up (I did this research too and could lecture an hour on the science and pathology of this), and I would go out like a light. So, stress and pain are the major triggers of the syncope in my case. Trouble is, when doctors refuse to write rescue medication for pain, they forget that sometimes, the body will shut down, it has to, it’s just that physiopathology. Doctors stupidly ignore this fact constantly.
Well, eventually I ended up with no insurance. I was able to get something through the Marketplace but soon found out that it would still not cover what was clearly stated in it that it would and this was after I met deductible. So, I reported that to the insurance commissioner of my state who has absolutely completely ignored my complaint. I’m totally not surprised because this state I live in is messed up in it’s governments and such. So I discontinued it because the premium was over a paycheck cost a month.
I was forced to look for alternative medications now. The “free clinics” around here have waiting lists months and months long and are over an hour drive from me. Not good with a migraine patient plus they have limited hours. The low cost clinics aren’t an option either. Their requirements are so weird it’s hard to decipher. And it’s all political of course.
So, I found the homeopathic route. The medications are easy to get, much more reasonable in cost, and don’t have the side effects of the chemical meds I was on before. And they work just as well even though at least once a month I will get a bad one during a menstrual cycle. I’m still working out the kinks of how to manage it.
So, I’m left with the other issues of my arms and feet. I do not know if or when I’ll have another attack that renders me almost helpless. This time, I will head to the er if that happens. But I really am terrified because I do not know what will happen. It’s hard enough to walk with my feet hurting constantly (I have a stupid doctor story with the neuromas too but this is a migraine forum). The IBS is bad enough and gets aggravated during a migraine attack too. I never got full strength back in my arms but I can lift 50 lbs now with both. Once in a day only, the rest of the day is shot after that). I still have the numbness and pain on the dorsal side of the left arm. That has never gone away. Nor can you touch it; I will jerk my arm away because it plain hurts. I do have a hypothesis of what might have happened with my migraine headache and my arms but I’m no neuro doctor for real. I can only speculate and wonder.
I’m treated horribly by people around me because they just seem to refuse that I hurt like I do. This is an invisible illness after all. It’s left me with maybe only one or two people that are really okay friends. Other people seem to get a “kick” out of doing all kinds of ‘trigger’ things to me. I do avoid every possible cause that I can. Yes, that means I cut off so-called friends that would on purpose do things to trigger a migraine. I had to for myself. Migraines are no joke.
So, no help, no support, no nothing. Migraines really are debilitating, horrid, a life-stealer. It may make me sound bad, I used to say that I wouldn’t wish this pain on anyone but after 30+ years of being maltreated, I do wish this pain and suffering that I go through on those that were horrid as can be to me. I’ve been hurting that bad for that long.
I live daily in a level 7-9 pain on the “pain scale”. I have to live daily pretending I’m “all fine”. But, I’m not. I’m hurting, I feel like I want to punch a wall out I’m hurting that bad. And I know, no one cares. But I keep on keeping on.