Stark

Has anyone tried a supplement to support the vagus nerve? I have seen one formulated by Dr. Driscoll that has decent reviews, but am skeptical. 

Is there evidence to support vagus nerve involvement in our condition? 

I've been getting chills on and off throughout the day for a few weeks now. It is different from my normal temp intolerance - I will feel a distinct, sudden chill and then my arms will be covered in goosebumps. The feeling can last quite a while and trying to warm up isn't very effective. It often seems to be triggered by eating. Does this happen to anyone else? Could it be MCAS related? 

@JoshMW @Pistol I also get a runny nose while eating and I feel like it could be MCAS. We're either of you ever tested? 

51 minutes ago, AnewDay said:

Sometimes it's triggered from eating it just feels like some thing irritating me when I breathe I'm aware of my breath;

    when I have a flare up and it's bad and I'm trying to sleep it's very very very very bad I'll have to at times make myself breathe consciously.

    It's very hard to sleep because  right when you're about to go to sleep you stop breathing  it's very hard to explain.

      Zinc carnosine has changed my life,   

 my orthostatic intolerance as improved starting to go for walks and run in fact about to go for a jog in a few minutes,

      I believe my orthostatic intolerance it's caused from an autoimmune condition of some sort     related to gut permeability anyway God bless I'll be back in about 2 hours 

 

That is quite literally exactly what I experience at times. I may have to try this form of zinc 

Interesting. Could you actually describe the breathing issue you were having? I'm curious about if it's similar to what I sometime experience 

I have been having pain and cracking sounds in every joint since coming down with POTS last year. My GP says it might be joint hypermobility syndrome, but I just find it too coincidental that my joint issues only started shortly after my autonomic system started to dysfunction. Has anyone else experienced this? 

Do you have EDS? Your numerous spine issues could point towards this. It is often comorbid with POTS

What was recommended to you for your tracheomalacia? 

Hi Megan, I assume you are from MN. Have you tried to be seen at Mayo clinic in Rochester? I hear they have good POTS doctors 

1. I've had POTS for only 4 months 

2. Some. I get fewer chest pains and I don't get such extreme heart palpitations (probably from increasing salt and water), but I continue to get more and more weird symptoms over time 

3. I can't drive at the moment because my neck is too stiff (unclear why) . I can stand or walk for about 10 minutes before I feel the need to sit down. I can do very short shopping trips or visit with friends as long as we're just sitting around. 

4. Pulse is about 55 when laying down, 65-70 when sitting up, when I stand up it jumps to about 80 and then by 5 minute is around 105. I have seen it as high as 130s if I stand or walk too long. Blood pressure varies wildly, often around 110/70 but I've also seen 145/85

I'm pretty new to POTS so my data is probably not that useful to you 

It was a not insignificant amount. I've had a few occasions of fluid leaking out of my nose when I lean forward as well, so it sounds like something I should look into. I do have symptoms of altered intercranial pressure, like tinnitus and weird vision stuff.

So I was just laying on my bed and some clear liquid came out of my ear.  Has this happened to anyone else?? It's definitely not water. 

I'm new at this whole POTS thing and the new weird stuff every day definitely freaks me out

I know many on this forum have experienced vision issues related to their dysautonomia. I have recently been experiencing visual snow, double/blurry vision, and floaters, but ONLY right after I wake up in the morning. After a few minutes these symptoms fade away, thankfully.  Has anyone else experienced this or have any theories? It happens before I sit up and goes away before I sit up so I don't think it would be related to blood flow to the head.  I also don't think it's a hydration issue for the same reason. Very strange and I'm hoping it stays limited to those first minutes in the morning

This is by far my worst symptom, too. I have it all day every day now, with varying intensity. I would do anything for some relief.

I'm trialing some antihistamines at the moment, but I would appreciate any advice 

I have this too and it's awful! My nose is always either completely stuffed up or it's slightly runny.  I never had this before POTS. Has anyone found anything that helps? I was thinking of trying some allergy meds.

Hi All,

New to the forum, 30 years old. I've been suffering from POTS for about 3 months and was recently diagnosed via TTT. I have a few questions, if you don't mind.

1) Is it worth it to go to Mayo for additional testing? I have an cardiologist who is willing to prescribe different medications to see what works, but I've heard Mayo has a great treatment center

2) I've recently been suffering from severe neck pain and a host of neurological symptoms (headaches, tinnitus, dizziness, tingling in hands) is this normal for POTS? My neck muscles are extremely tight and I have limited range of motion in turning my head. Despite several MRIs, an EMG, an xray, and a consult with a neurosurgeon, they can find nothing wrong.

3) I have also had episodes of very severe shortness of breath, and the feeling that my body has "forgotten" to breathe. This occurs most frequently when I'm trying to sleep. Does anyone have any solutions for this? Is it dangerous? It was so bad last night that I went to the ER and I got no sleep afterwards due to it continuing all night. It was genuinely terrifying.

These symptoms are all very new and scary to me. I would appreciate any comments