For the past year I have been much less symptomatic than I have in years (not counting my trials with my medication side effects). I was certain that I was prepared if this came to an end. I’m not. Right now, I’m scared. I don’t want to end up like I was a couple of years ago, or what I was like from 2008 – 2016. I’m trying hard to be okay with my life no matter what. I got to the point that I was okay when I was sicker, but it’s so much easier when I’m not.
Before you think that all of this is because of the stress of us possibly moving to Tucson and worrying about our family, my increased symptoms started before my mother-in-law’s accident; I’m not saying stress doesn’t make my symptoms worse, but it didn’t cause it. Although, it may be contributing now.
About 3 or 4 months ago I started having some new gastrointestinal symptoms. I’m having excessive and extreme belching, the feeling that there is something stuck in my chest, and alternating constipation and diarrhea. Oh, and we can’t forget the excessive smelly flatulence, I really wish we could forget that, and I’m very sure Stuart wishes he wasn’t subjected to it. I’ve been put on acid reflux medication, something I was finally able to get off of early last year. I tried 3 different kinds of reflux medication and I’m still having symptoms, they are reduced, but they aren’t gone by a long shot. I had an endoscopy on Tuesday, and it showed…..nothing. A little redness, but that’s it. She did take some biopsies but it’s not expected to show anything. I’m kinda hoping it does. Nothing serious, but something that can be treated and I can get off this medicine, that isn’t taking care of things anyway. A few years ago, I was very sick with gastrointestinal issues and after over a year of testing it was found that I have fructose malabsorption. (I already knew that I was allergic to wheat and I won’t even get into my experience with gluten) All I could think yesterday when I heard they found nothing, was oh no, another year of testing, and possibly finding nothing. Since I’m not throwing up, losing weight unexpectedly, or passing blood; this really isn’t a high priority to doctors. I’m already on a low FODMAP diet and I don’t really want to make another major change to my diet, but I’m guessing that may be what’s going to happen. Damnit!
With the crazy weather we’ve had this winter my migraines have gone out of control! They were a bit better, but recently I’m having migraines every day. It’s driving me crazy. The pain goes from a 5 to a 9, sometimes all in the same day. I’m only supposed to take medication 10 days a month, as of the 12th I’d already taken medication 8 days this month. Crap, crap, crap! They say to take migraine meds at the first sign of a migraine, if I did that, I’d be out of meds in 10 days, instead I wait until it either gets to a 7, or it’s been non-stop for a few days. That really sucks. I will be taking meds a few more days this month. I’m going to start a DHE regimen to see if I can break this cycle. That’s means getting a shot 3 times a day for 3 days. My butt is going to be so sore, and these shots hurt, but hopefully I’ll feel better next week. DHE is not a preventative, but it does a good job at stopping a migraine, and it often works on cluster headaches too. Doing the 3 day regimen is to break the cycle, not to prevent new attacks.
I do start Botox next month. I tried it a few years ago and it helped for a while, but it stopped working. We are hoping I have a better response to it now. My doctor is willing to prescribe the new GammaCore, but insurance won’t cover it and it’s really, really expensive! Hopefully they’ll cover it in the future. It’s shown to help with both cluster headaches and acute migraines. It doesn’t prevent migraines, but it can stop them, and since it’s not a medication I wouldn’t be limited to the 10 – 15 uses a month. There is also 2 new medications coming out later this year for migraine prevention. I hope insurance companies will cover them as soon as they come out, a new migraine prevention medication is desperately needed.
I’ve also been much more dizzy. My balance is worse recently, and the world often spins when I move my head too fast. Last night I kept having vertigo every time I looked up. Just moving my eyes to look up made me spin. That was new, and I hope it never happens again. I think this increased vertigo is migraine related, but I can’t be sure.
Today I had a confrontation with someone and I didn’t handle it as well as I’d have liked. It left me shaky and full of anxiety. When I tried to explain it all to Stuart I got so upset I started to seize. I haven’t had a seizure in a very long time, luckily this was very minor, but it scared me. I am happy to say that I calmed myself during this by deep breathing and chanting with Stuart. Sometimes this mindfulness thing really works. 🙂
Now if I can just take each day as it comes and not worry so much. My worrying isn’t going to make it better. I think it’s time to get serious about my meditation practice.
Anyone out there go from feeling better to feeling worse again? How did you handle it?
How do you deal with it when you know something is wrong, but the tests come back normal?
Anyone trying or planning on trying the GammaCore?
How are you guys doing? Any news? I haven’t been able to read many blogs lately, or be on social media at all, so many things going on. But I want to keep up with all of you, so please, how are you?