Marabi

Dear @Water Lover, @bizbiz, @MaineDoug and @Sushi,

Thank you so much for sharing your expieriences with me! You have really helped me, how to prepare to this procedure and these are valuable points to share with doctors before my gastroscopy. I will do as you advices.

I'm really grateful, guys! ❤️

Have wonderful day!

@Pistol, thank you for telling me about it, I will share it with my doc, though here where I live most docs rather don't take dysautonomia seriously. Though I will get them know about it.

Hey,

Few years ago I've developed dysautonomia with many symptoms, probably as secondary to mast cell disease, together with ME/CFS.

Since two years it's been much better, I rather rarely have dysautonomic symptoms now, if only I strictly follow my routine. Anyway, due to possible EoE I will have gastroscopy with few biopsies under general anesthesia. I'm worried that this will make my dysautonomia worse again. Especially, because I'm sensitive to meds, but also I won't be able to drink and eat to 6 hours before this procedure.

Do you know, how to prepare to this, is that make sense to eat more salt this day? I'll appreciate any tips you can share, thank you!! ❤️

Thank you NinaS for your reply, this sounds scary. I hope your grandma is ok!!

MomtoGiuliana,

Now I think it's even more important to me to test B12 level in the next few days. Thank you for your reply.

Hi!

Since few days I've had a new, annoying symptom, that really worries me a lot. 

It's been a strange, pulsating sensation, as well as tingling on the left side of my body - from feet to my face. I'm scared that this is some kind of neurodegenerative illness The other thing I was thinking about is vitamine B12 dficiency or perhaps a problem with calcium absorption (I'd had very strict diet for about 1,5 year, but it was more that a year ago).

Two years ago I was diagnosed with dysautonomia (full blown spectrum of every possible symptom, but with only mild POTS), after changing diet and avoiding stress I've almost got rid of most symptoms.

Saying about this new one - when I lay down tingling gets more intense, and also in the morning, together with some mild IBS symptoms.

Does anyone of you guys have a problem with similar things going on?

PS. sorry for any grammar mistakes, I'm not a native English speaker.

On 3/10/2020 at 12:13 PM, merkat30 said:

I have mast cell activation syndrome I have tried antihistamines I have tried sodium cromoglaite which sent me into currant flare of very high blood pressure on standing high  up 200 sometimes 😱😱high heartrate .then it goes to low blood pressure on sitting laying down  all the usual mast cell stuff lymph gland hurt everywhere my toilet is my new home hives flushing are my new fashion accessories bland boring few food diet 😔😔😔 dont forget the swelling and endless epi pens muscle cramps dizziness migraines i also have a form dysautonomia that they cant pin point but do  have appointment with new doctor in April. I guess what am trying say is I don't no if half this is of mast cell or pots. what medicine do they treat u with ?I still at early treatment but been going on for 7 nearly 8 years now mast cells stopped pot meds working i gradually got worse over years  I actally have a appointment with a dr croom mast cell specialist next week been waiting month getting worse hope today is a  a better day 

merkat30,

Really sorry for the late response, I've had an error on this side for about a week and later I've forgotten to check.

Yes, cromolyn sodium is overrated! It made my diet even more strict, after taking it I've still had "allergy" to potatoes. Sorry to hear about your strict diet, by the way I now how does it feel...

I have similar problems with recognizing, which symptoms is from which illness.

You asked about meds - I've been taking fexofenadine, now I have prescription for rupatadine. I still haven't bought these meds, cause I really don't know if it's a good idea (I have many meds sensitivities, but docs don't seem to care.). I also had dr appointment few days ago with mast cell specialist. But I must say I'm quite dissapointed...

This situation with virus made doctors to online contact and now I can talk with specialists, that weren't avalaible for me before, because of my sickness. I have appointment with another doc in few days, after Eastern; this time it will be dysautonomia specialist and I'm very exited, I've never talked with this kind of specialist before. 

How was your dr appointment? I hope you feel better today!

Best wishes ❤️

Hi!

I know many people with dysautonomia also suffer from MCAS and the connection between these two diseases is now confirmed by mast cell experts.

So, I wonder if anyone here has the second mast cell disease, mastocytosis?

I was diagnosed last year with cutaneous mastocytosis. I've had also vasovagal syncope, motion sickness, CFS, many food intolerances and other dysautonomic symptoms.

@Pistol,

Thank you so much for your answer, it seems there might be some hope out there.

To be honest, no, I haven't seen a knowledgeable specialist in the dysautonomia subject. Only a cardiologist, but she neither tested me nor advised any of the exams you've mentioned. The problem is I live in the area in Central EU, where it's hard to find any dysautonomia specialist near me. It's a vicious cycle, I have symptoms that stop me from travelling and seeing a specialist, yet the same specialist is needed to treat these symptoms!

Now I'm waiting on a list for neurological exams.

Quote

Are you taking the recommended medications for MCAS, such as H1 and H2 blockers? Have you seen an allergist?

 I've tried many meds, also cromolyn sodium and Prednisone. I was taking H1 blockers for few months. Unfortunatelly all meds I've tried I've had to stop due to side effects.

The same problem I've had with all kind of suplements, like calcium and vitamin C. But I'm still looking for something that works for me.

Hi,

I wanted to introduce myself. I have many symptoms and don't know what to do. (I'm not from English-speaking country, I hope my style or grammar won't annoy you too much!).

So I'm a woman after 30 and I'm almost house-bound. I don't have POTS according to my doc, but many other dysautonomic features and symptoms, yet it's difficult to get official diagnosis here, where I live.

Few years ago I've started to have symptoms (very ocasional presyncopes), which one year ago unfortunatelly increased. After minor surgery I've begun to have GI tract symptoms (reflux and IBS), and in the same time I've developed motion sickness , some very strange anxiety attacks (like sudden fight or flight response few times a day). Since then, Ive had different feeling of my body all the time. Like I was out of chemical balance or something, everything - weather changes, temperature, even short travel, bowel movements, exercises, sounds and smells - can make feel like something is going on with my whole body and I'm going to faint, I feel very weak at these moments and I have nuseas and dyspnea.

What's more, I have very strict, poor diet, because I have so many food intolerances. I always was sensitive to drugs, but now is much worse, Ive stopped even medications I've had for my illness. Because I was diagnosed with MCAD - urticaria pigmentosa - this year (earlier with PVC, IBS, CFS, psychosomatic illness). Yet these drugs only have helped for some symptoms and only a little.

I know there's a connection between MCAD and dysautonomia, but also it's linked with EDS, which I don't have (I have only few hypermobile joints on hands fingers), but it's present in my close family.

I don't want to think this illness has ruined my life and is still doing so. I'd rather think "it has turned it upside down".

If somebody has mild to moderate chronic symptoms all the time, and sometimes is more symptomatic, but always feel her body different, do you think it's possible to ever function normal again? Because I can not work outside home, I can't travel, I'm so sick of this sickness! I loved to paint, to dance, I totally loved hiking and trekking in mountains and woods, I loved to drink and eat with my friends on the city, I loved so much going outside. I'm more a country- and outdoor person. Yet I stuck in the apartment with loud neighbors, when sound is one of my biggest stress trigger. 

Do you think it's possible to feel better and have life again?