Hello! I'm New Here

[stillhoping]

Hello I’m new here and have problems with fainting now and then, and its been a bit worse lately.

I suspect I could have a mild case of EDS, hypermobility type, because of the fainting and other things.

But my biggest problem seems to be the dysautonomia. Also fatigue and not being able to think clearly are big problems lately too. I’m also having problems with esophageal spasms. Lately, I can’t eat or drink – especially drink anything – after 9 or sometime in the evening. If I do, it doesn’t go down right. And then if I go to bed, I’ll wake up sometime later feeling horrible and then a syncope episode gets triggered. Luckily, I’ve at least discovered that carbonated water is safe for me to drink in the evenings.

A lot of anxiety runs in my family too.

I’ve also been under a huge amount of stress the past few years now – divorce, my daughter had surgery last year, then my mom fell and broke her hip, etc.

In the past I’ve noticed that my symptoms seem to get worse after a long term stress. Short term stress is different and while I’m in the middle of major stressors I don’t do too bad, but after I get passed them it seems my body falls apart. I’m wondering if that is what is happening to me now as some things have settled down a bit in my life.

Anyway I’m here to learn more about what others are doing to help with their dysautonomia. My doctor isn’t too helpful and I don’t know when I will be able to see a specialist that really understands these kinds of problems.

[Guest ANCY]

Hello, welcome! I hope you are able to find what you are looking for through the forum. Though I started out with near fainting spells I now deal with 15-20 syncopal episodes a day. I have greter fatigue when my symptoms are worse, and thinking clearly is out of the question many times because of fainting. Things are getting better for me now though, through exercise, medications and IVIG therapy, the IVIG being the most helpful. I have problems with gut motility and though I know others on this site have the esophageal part, I do not. I know stress can play a part in symptomology for me so I try to stay as stress free as possible. I hope you are able to realize some improvment soon and see the specialist as well. God bless.

[corina]

Hi stillhoping, welcome to our forums! Hope you will find the answers you need here. At least you'll find comfort as we know what you're going through!

[statesof]

Hi stillhoping, welcome to the forum! Some things that have helped me is water and salt loading a few times a day, wearing compression stockings for a few hours, and not pushing my limits. Going past my limits was one of the worst things for my POtS during the first year, so for me it was very important to find out what things I could and could not do.

[writerlymom]

Hello and welcome Hope you can find helpful things here. For me it helps to force myself to move around in the morning, despite my body not wanting to. I'm mindful of the same thing statesof said because it seems if I have prolonged periods of overdoing it I seem to pay a price. Prolonged stress takes a toll on me too. A low dose of Paxil has been helpful for me; others have had different experiences. Best wishes to you!

[Katybug]

Stress definitely affects my symptoms. I can get through the situation but once the acute issue is over, my body turns to jello. It's like I put so much into getting through it and my stress hormones run so high that once I have the adrenaline let down, my body can't recover very well.

[stillhoping]

Thanks so much for all the replies!

ANCY - oh my gosh! I can't imagine having 15-20 syncopal episodes a day! Once a day is bad for me, even nearly fainting leaves me feeling pretty bad for quite a while. Exercise seems to help me sleep better, and I haven't done any yet today, but really need to try. At least I'm feeling better now, this morning I felt pretty bad and this afternoon I had to be somewhere.

Thanks corina, it does help a lot to have people to talk to who understand.

statesof - that's the stuff I've been working on! I ordered some compression stockings which should be here tomorrow. So you only wear them a few hours a day? I've never worn them before and don't know what to expect. And salt, I know I was told a long time ago I should probably have more salt, but I've still always bought low and no sodium food! Last night I ate a whole can of soup which was pretty high in sodium and I definitely slept better. I still woke up in the middle of the night but my heart wasn't pounding. And even though I had the same amount of fluids close to bedtime when I got up to use the bathroom I didn't go nearly as much. I woke up feeling ok although after being up a few minutes I started feeling bad again.

How do you get your extra salt? Salty foods? supplements? Right now eating some salty foods sound good, but I'm sure I'll get tired of them plus so many high sodium foods and also high in fat and are processed foods. I'm not sure what would be a safe dose of sodium chloride supplement though.

Interestingly though, a few months ago pickles started sounding really good to me and I was eating some every evening and I was feeling much better then. They don't sound as good to me now though.

writerlymom - I'll have to try and start moving around more tomorrow morning. The past couple of mornings I felt too sick and close to fainting though to move around too much too early.

Katybug - yes, my body has been jello lately! Its not doing what I want it too at all.

Thanks again!

[bigtrouble]

How do you get your extra salt? Salty foods? supplements? Right now eating some salty foods sound good, but I'm sure I'll get tired of them plus so many high sodium foods and also high in fat and are processed foods. I'm not sure what would be a safe dose of sodium chloride supplement though.

If I eat macaroni or spaghetti, I had it to th sauce. I can't tell the diffence. I have also added baking soda once (sodium bicarbonate). I have also tried adding to a juice or milk (tastes horrible). I only do it when I have periods of lightheadedness, which isn't often.

[statesof]

Hey stillhoping, when I first started with compression stocking I could only wear them for 2-3 hours because it would almost start giving me a headache, just my weird body I think, but now I can wear them longer, I'll usually try and wear them 4-6 hours but it all depends how many errands etc I need to do, some days I just forget.

As far as salt my cardio suggested chips as a unhealthy way to get more salt, or drinking pickle juice which I guess is healthier. I just buy a big container of salt and then add it to a glass of water and drink salt water during the day. At first it was actually kinda gross, especially since I would add way too much, but then I actually found myself starting to crave salt water at times.

[stillhoping]

Thanks bigtrouble and statesof

The compression stockings I bought were too big, so not nearly tight enough.

I finally got a blood pressure monitor, I thought I should have one if I'm going to increase my salt intake. The weird thing is now though, after my blood pressure being low to normal my whole life, is that its showing it as kind of high now. Could be that I over did the salt and is temporary. I don't know. I'm feeling better now though.

And it turns out my phone has a heart rate testing thing, so I've been using that too. I don't know what are typical heart rate and blood pressure fluctuations though, both for 'normal' people and those with dysautonomia.

I started taking CoQ10 and took an epsom salt bath last night, and felt so much more relaxed! I don't know which did it though. And at least for a while it seemed my heart rate wasn't fluctuating as much.

I checked into salt tablets, and it seems they upset some people's stomachs though and some of the tablets you can get don't work as well and have sorbitol, so yes, I came to the conclusion too that just adding salt is good enough. Although now since I don't know what is going on with my blood pressure, I'm holding off on that.