At a loss

[Lissa1707]

Hi everyone,

It's been years since I have posted. I was diagnosed with POTS 5 years ago after a mycoplasma infection and was able to reach a place of function after the first year and a half with diet change (paleo) and midodrine and mestinon. The past year I have been in a flare with new symptoms after receiving the flu shot. It seems I'm having more general autonomic dysfunction than POTS. I passed out at home Saturday for the first time in a long time and I'm just at a loss of what to do anymore. Over the past year I have really struggled with GI symptoms. I've lost 8 pounds over the past month (down to 97 pounds) and can barely eat anything (I feel full, nauseated, bloated). I'm getting a gastric emptying study done today for possible gastroparesis. I feel like I have seen every specialist possible in the last 5 years. I am so scared that I won't be able to continue working and of what else this awful disease is going to take from me. Anything we try (med wise) just makes things worse. I switched from Luvox to lexapro about two months ago and I'm worried it may be contributing to this flare which is so disappointing because it has helped in so many other ways. I am just exhausted with doctors appointments, tests and treatments that don't work. I made an appointment with a naturopath next week in an attempt to come at things from a new approach. I also have autoimmune disease and hashimotos and questionable lyme. I'm 29 and married to a great husband. We don't have any children. I just feel so down. I have always had a plan or an idea of what's going on but I am just at a loss. Sorry if this post is negative--I just really need to vent to people who understand. My electrophysiologist wants me to try florinef but I really do not want to be on it. 

Thanks for reading,

Lisa

[nik1980]

Lisa,

Do not apologize for being negative or needing to vent.  This is the place to do it because most of the world has no idea what we go through.  I too suffer from GI issues.  Most people do not understand how debilitating it can be or how bad it makes you feel.  Most people don't understand just how crappy we feel on a daily basis and that in the midst of feeling crappy, we are still working, trying to be spouses or parents, and trying to maintain a household.  Ever day is a battle.  But know that I understand.  Know that you are not alone.  And remember, not only do we deal with the physical aspects of the disease but the emotional aspect of having a chronic illness and the worry about what the next day brings.  Hugs to you and feel free to contact me if you ever need to chat.

[Pistol]

Yes - that is exactly what I want to tell you. If this forum is working then it will be of help to us - but we are welcome to post our frustrations, anxieties and even anger at our condition. I am sorry you are feeling bad again. I know from my own experience how tightly we will cling to hope when we improve and then how quickly we seem to loose it when we flare back up. I have been there many times and still do - so do many of the members here. The most unsettling fact is that dysautonomia cannot be controlled or predicted, so we constantly are balancing on a high wire. And the fact that the symptoms change over the years is a dollop on top of that!!! - I also have different symptoms at different times. When my HR, BP and syncopal episodes are under control my stomach will act up or the fatigue and brainfog will nag at me. Unfortunately the ANS - as you surely already know - controls (or not!!!) many body systems that we ourselves have no control over. So right now you seem to be in a slow motility phase and I m glad to hear you are getting that gastric emptying study. I know it is frustrating and tiring to keep having to go to so many dr appointment but that is what we need to do to eventually get better. --- A naturopathic provider may or may not be able to help. I have found that in time every flare - and whatever the symptoms - will resolve to a degree. I have been able to get through them with just IV fluids - they seem to calm everything down. Others do best with rest followed by slow reconditioning, some with diet and some  with medication changes. Also - I have experienced several times when I flared that there was an underlying deficiendy ( B12, Vit D, ferritin - I have lacked all of them and improved with proper supplementation). -- As you see - there are many ways to survive a flare, and we are all in the same boat. We are here if you need help or advice or room to vent … be strong, be informed and don't loose hope!!!!!

[songcanary]

I agree with everything above.  But what stood out for me in your post was that you are married to a great husband.  I did not have that kind of support, and believe me, it was rough.  I still have nightmares about it.  This is a great place to vent and I did plenty lol.  Plus, I learned so much from others.  Hang in there!

[StayAtHomeMom]

First of all venting is good for you. Especially on here where we have all been in similar shoes. 

Second I have a question. You said you have had GI issues. And you do the paleo diet. Does the paleo diet allow carbs? I ask because I recently started keto (to lose my extra weight) and I noticed my GI issues have calmed down greatly. I still feel full easy but no nausea, diarrhea has eased (until I eat too many stover's sugar free chocolates ), bowel movement have regulated, and I don't think I have had heartburn once. I found it to be an interesting side effect of my diet and was wondering if other diets have helps as well. Not sure if it is the low carbs that help or something else. 

[Caty]

Hi Lisa, I am new in all this. I started with symptoms a few months ago but GI issues have been as scary as the tachycardia for me. I have seen great improvement with MCAS treatment, I was started with Zyrtec and Zantac and I could see improvement the next day (started one and a few days later the other). It was crazy. The digestive sx are always there, when it’s time for the next dose I can feel it ( the nausea comes back and I feel sick overall). Have you explored a possible MCAS dx?

 I still struggle with hyperadrenergic sx, haven’t found a way to improve them yet, and I need atenolol  for the tachycardia. But the GI is controlled with the antihistamines.

A big hug and my prayers for you.

Caty