Okay - so I have suffered from migraines almost my entire life. So what I think at this point. I have suffered from non-stop constant migraine with no let up since January 2008. Oh, I take that back. I did have a let up after my visit to the Michigan Head Pain & Neurological Institute where I was hospitalized for three weeks after having been hospitalized here and gone through so many other treatments here. Thank goodness my neurologist knows and works with them at MHNI.
But, the pain came back when I went back to work and dealt with that and was back in my normal life. As normal as could be. Now I live with constant pain at a high level - usually average daily 7-71/2 on a 10 scale with spikes up every day to 9 or above at times and when I take my medications the pain can get down to as low as a 5 or 6. But that's it. That's what I live with. I have been once again placed on short term disability and have been since May and am not seeing improvement.
I think I have gotten used to some of my medications and my doctor is making some changes to see if that helps. I'm not your normal even chronic migraine sufferer - like who is? - I can't take any normal migraine medications - the triptans - because I have vaso-spasms and they worry about stroke. They also worry that the longer I am in constant pain the chance of stoke goes up.
I also am hypothyroid severely and so I have to manage my thyroid with my migraine medications. I also have narcolepsy without cataplexy - meaning I don't nod off unexpectedly like they show in funny movies - which it isn't - but I have trouble - hah trouble, I don't reach deep sleep very often. I go straight to REM and stay there and awake and have what I used to call night terrors but actually is called "sleep paralysis with hallucinations" and is common with narcolepsy and can happen occasionally to anyone but was happening to me a lot. Basically your body puts you into a paralytic state when you are in REM sleep so you do not act out your dreams - good - bad when you become conscious during REM and then also have hallucinations and feel like you can't move or wake up - because you can't - and it is extremely scary. Too much on that one - the medication they gave me has helped tremendously with that. I also have NCS which is a type of vasovagal syncope. I pass out at unusual and bad times - see my post of most embarrassing fainting episodes.
If that isn't enough, my blood pressure runs very low normally. Apparently it is more common with migraine patients than I had thought. Anyhow, my other condition is a familial tremor. Not a big deal it was when I had a slight tremor in my hands that got worse now and again and was told that would get worse and move into my arms, legs and neck and head as I got older. I thought, Kathryn Hepburn rocks so no big deal and my mom has tremors and it's still just in her hands.
Well, the constant migraine pain kicked it into high gear. I shake so bad now that the doctors and my husband and grown sons don't want me driving because it shows up in my legs while I'm driving. I still drive to the doctor but everyone's at work so I have to. The tremor gets to where I can't control it at all and I shake all the food off my fork or out of my sandwich before I can get it to my mouth. Then, so bad I can't get my contacts out because the tremor decides to also become a jerk and I keep poking myself in the eye. I have to have people fill out paperwork for me because I can't write. And I have a hard time reading when I shake the book or paper and if I don't then the migraine causes a twitch in my eye - minor - but enough to cause major pain. The computer is better because I can make the words bigger. I miss reading.
I miss not feeling like a freak and I miss not being a part of the world - contributing like I used to. Now, I have to pat myself on the back for very small achievements. And that's okay. I am here and I will be okay. I will survive. I hate feeling like I wonder what others are thinking when they see me and I can't give my medical history to everyone that sees me because then they think I'm more of a freak.
And then I hate that the people close to me that care about me and understand go through periods where they don't understand and are tired of me. Not of me but they miss the real me - the old me - and want me better. I do too - but I can't force that to happen. I tried. It put me back on disability and with the knowledge that when it's medical - no matter how many other obstacles you've overcome in your life - you have to let go and meditate and relax and not push and force your way out of this one. It tends to make migraines worse.
That's all for now - been awhile since I wrote - I'm going to try to do so a lot more often. I'm looking forward to invisible illness awareness week and the free conference - see link - week of September 13th. Last year's I got a lot out of.
Love to all and take care of yourselves.
