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?
Picnic with Ants 
Hi Wendy, sorry to hear you are getting worse again. Hopefully things will get better. I have horrible acid reflux due to a medication I am on. It not only causes horrible belching and flatulence, but diaharria, and nausea. Believe it or not, I take pepcid (Famotidine) 40mg for it. It’s prescription based but i am told it is the exact thing as the over the counter version. It took at least 1 week for it to kick in and when it did, all my symptoms went away. We switched medications again but it has the same side effects. As long as I do not miss a dose, I do have belching and flatulence but not the acid reflux, nausea, or the diaharria.
Good luck with the Botox and getting the new pills.
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So, I just looked the Famotidine up. The 40mg is by prescription only. Now I get to fight with insurance because it is not available over the counter.
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oh Terry, that sucks.
I’ve been on Famotidine, and prevacid, and I’m one two other things right now, I can’t recall the name of them. One you have to dissolve and take it a couple of times a day, the other is a once a day thing.
The reflux is really minor…I mean it hasn’t been coming up in my throat like it used to. and I sleep fine. (well I have trouble sleeping but not from that 😉 I guess the feeling like there’s something stuck in my chest is reflux. That can get bad. but it does seem to be a bit better with the meds. The belching though…oh my golly you would think I’m a college dude drinking beer and trying to belch the alphabet, but all the comes out is very loud…BLAAAAAOCH. 😛 now that it’s moved south, it’s just…..well ewww. (I didn’t make it to the bathroom one day last week. I didn’t even know I had to go.) TMI? sorry. Frustrated. You get it. I know.
I can’t figure out why this started just a few months ago. Nothing changed medicine wise or diet wise. Bewildering.
I do hope I’m not getting worse really, just going through a bump in the road.
I hope you don’t have to fight the insurance company over the Famotidine. (cool thing about Pepsid, it’s a good anithistamine. When I had a severe allergic reaction to Celebrex they gave it too me, along with other stuff, in the ER. I asked if they thought my stomach was upset. hahaha For a long time I carried it and Benedryl with me all the time, just in case. I haven’t had a bad allergic reaction to anything in a long time though…thankfully.
Good thoughts.
thank you for your kind words and for caring. it means a lot.
w
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I had the sinus flu that was going around for two months. I think I am over it but am so worn down from being sick that long that I’m not sure because all my fibro/CFS stuff has flared up because of it. I haven’t even blogged for 5 weeks so don’t bother to try to check my blog. Feeling rather behind the eight ball, myself. I hope something will help you out, Wendy. It’s always disappointing when it feels like you have taken steps backwards. I know I always wonder if I will get back to where I was. Cross my fingers and wait it out. 😉
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Thank you Rita.
I’m so very sorry you have been so sick.
What might be a simple virus to others can really wipe us out.
I’m always amazed at how well you cope, how much you do, how great you are.
I’m so glad you are in my world.
w
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The thing that makes me worse is exposure to fragrances. Has that changed in your environment?
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Huh. I’ve been having some vertigo as well lately. i didn’t know if it was fluid in my ear or what but when I move my head or eyes fast I get dizzy.
I have not heard about this but I plan to do more research on it. I’m also investating CBD oil for my migraines and fibro but it is said to be miraculous for seizures and they have kids using it. I hope you feel better. ❤
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I am simply sad you are going through all of this. I rarely gets migraines anymore, maybe 3-4 times a year. My gastro is affected right now by antibiotic side effects, but I also get occasional days when I need to be near the pooter chair. Fibromyalgia has reared its ugly head, as it tends to do when it is colder weather (not that it doesn’t act up at other times of the year). It is making me rather grumpy, but I am grateful I do not have migraines as much and wish yours would go away. xo
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Thank you Lisa,
I wish all your pains and other icky stuff would go away too. xoxoxo
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Oh Wendy, I’m so sorry you’ve had so much to deal with and I understand how disheartening (and frustrating!) it is to have a period where things are looking up, only to take a turn for the worse again. I’ve not come across GammaCore before but I’ll keep my fingers crossed that’s something you could be able to get in the near future, it’s not fair that there are things out there that could help, but that insurance won’t cover. I’ll keep my fingers crossed the botox can help, too. In terms of how to deal with getting worse, I don’t know; I’m going through that myself at the moment, feeling absolutely awful, washed out, another chest infection (number 5?), pulled rib muscles from the coughing again which are so painful, just generally pretty fed up with it all. I try to put a focus on being more gentle with myself and not rushing things, and trying really hard to remember the better days and that things change all the time, so things can and will get brighter – for both of us, eventually. It’s a rough ride.
Sending hugs your way.
Caz xx
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Oh Caz, I’m sorry you are going through so much. I hate it when I have a cough that won’t go away. I so feel for you. Everything you said you try, sounds like me talking to myself. This mindfulness thing really does work doesn’t it? 🙂 Even when we feel like we don’t do it well, we are told to be gentle with ourselves…. I think that’s pretty awesome. Things do change all the time….I know I should not get too used to the good days because at some point it will change, just as I shouldn’t get too caught up in bad days, because it will change. it always changes. Things can get brighter. and they will, for both of us. Thank you for the hugs!! Sending hugs to you now! Did you feel it? {{{Squeeze}}}
Wen xo
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Damn, Wen! I am so sorry. Frustrating and scary… but for everything that is coming up you are making a counter move. You are handling this. It must be an out of control feeling but you are very much in control. I did go through a period where I would say I went into remission of sorts, then it came back and I had to struggle again… just finding different meds, therapies, ways of exercising but I did get a handle on it again… I find myself often cycling the hardest part is the fear and utter devastation when you think you are on the right track and you get knocked down. Don’t stress, fight the new fight! So sorry you are hurting and you will figure it out this time too. xo~Kim
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Yikes! GI troubles are the pits! I have severe IBS and it’s a huge fear it’ll spiral out with my long family history of stomach and colon cancers. What I can say though is that from going symptomatic to asymptomatic and vice versa is all part of my life. I’ve learned to accept it. It’s been scary every time a mention of paranoia and intrusive thoughts creeps into my head as I feel that it will just lead into a psychotic phase. But Mindfulness has thought me to recognise that I’m never 100% either symptomatic or asymptomatic and to treat each state without judgement (or as best as I can). Take care of yourself!!! ❤
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I’m sorry you’ve been having such a time of it! It’s amazing what stress can do. I have a couple of meds I take to prevent migraines and another to try to end them. I tried the botox years ago and it did nothing for me, so I’m always happy to see it work for someone else.
I did have some digestion issues about a year-ish ago. But I think it was stress/dysphagia-related/food poisoning induced. Gentle hugs and hopes for figuring it out and feeling better.
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Wendy, so sorry you’re getting more symptomatic. When that happens it’s hard for me not to get more anxious and more stressed which makes it worse. I think your mediation practice will absolutely help with the anticipatory anxiety. I’ve learned that nothing is straight line in life. Things get better, things get worse and then get better, I try hard to hold onto the fact that nothing lasts forever – the good and the bad. When my body goes out of whack I try to use that as a reminder to get more serious about doing the things that help and that I’ve let slide, buckle up and wait out the ride. It’s always hard though when I don’t remember buying a ticket for the ride.
You’ve done really well under horrible circumstances and no one can deny that.
P.S. Take a look at the video I sent you on my blog – it’s really inspiring – especially since you are a wonderful artist.
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