dkd

Thanks everyone. I was thinking of the one for runners/cyclists. I guess I won't try those. I was thinking if the foot is out, then it might swell up from blood pooling???? I haven't tried anything above the knee. I have big thighs, so I didn't want a line across my thigh where the fat would bulge over the top-haha!! And I have a lot of pressure in my chest, neck, and face, so I was worried waist high ones might make that worse. I'll just have to experiment. Thanks again

I was wondering if these calf sleeves are as good as compression socks or would socks be better since the whole foot is in there also? Anyone have any experience with them? I 'think' the 20-30 weight socks help me some. I'm not sure though. Do the calf sleeves come in a certain pressure rating? Thanks!

Most of my presyncope episodes were when sitting and one while lying down. The first time, I was watching videos on youtube and had just eaten a cookie when I got tingly all over, vision started dimming. I stood up, not know what was going on. I felt shakey and weak, so I sat back down. I though maybe I had a blood sugar drop since I'd just eaten that cookie. It was about 5 months later that I got my dysautonomia diagnosis. I haven't had any 'bad' episodes since starting beta blocker and midodrine (knock wood) but I still get these little momentary lightheaded feelings--like when youre driving on a country road and go over a little hill kind of fast and you get that little whoop feeling--and these are pretty much always when I'm sitting. I'm assuming it's a quick blood pressure drop, but I'm not sure.

Have you seen a cardiologist? Specifically an electrophysiologist? That's who diagnosed me after he did a tilt table test. Have you had one of those? I had been to: my general practitioner, a general cardiologist, a neurologist, ear nose throat doc, endocrinologist, gastroenterologist, and then finally an electrophysiologist and he put it all together. If you haven't been to an EP yet, maybe that should be your next step.

The old 'remedy' for chicken pox was calamine lotion, so maybe that will work on shingles also? Hope you find some relief soon!

I thought I replied, but I don't see it. Have you checked your blood pressure? Mine tended to run around 90/50 on atenolol and I felt tired and more dizzy. I think I took it for about a week before I called my doctor and he changed me to betaxolol. I've been ok on it. It lowers my heart rate about 20 bpm and my blood pressure is staying up in the 110's/60's. So, if you don't feel any better in a few days, call your doc and see if they'll change you to something else. Good luck!

In 2010, three days after I received a flu shot, I woke up with horrible pain in my armpit, front of shoulder, back of shoulder. The pain moved down the arm over the next two months. I still have numbness/tingling in that hand. I have no proof that it came from the flu shot, but I am afraid to get another one---ever again!! My dysautonomia symptoms didn't start until two years later (that I noticed anyway), but I still wonder if that contributed to it.

I have the squeaky voice thing also. My thyroid is fine, upper GI test was fine, potassium is fine. I just chalk it up to dysautonomia

I think I read somewhere that it stays in your system about 4 hours, so it's ususally prescribed three times per day. My doc prescribed twice per day, but I usually forget to take the second dose. I don't know that it helps me feel any better, but I haven't had any syncope spells since I started it, so that's a good thing. I hope it helps you--good luck!!

Sometimes I think 'oh, my heart just stopped'. Like my body feels like it just 'stops' for a split second. Usually there's always something tingling on my body (foot, fingers, leg, etc) and sometimes it just feels like the tingling stops, but just for a second. Or I'll get a split second where my head feels weird like right before you take a plunge from the top of a roller coaster and you get that light headed feeling. All weird sensations....

Have you been to an endocrinologist? Seems like something's going on with your cortisol with the symptoms following a pattern. Also as someone else mentioned your iron levels. Have you had a glucose tolerance test? Checked for diabetes? Just thinking out loud here..... I hope you can figure it out .

I take betaxolol which is supposed to be heart selective and I still have tight chest/chest pressure/breathing difficulty. I asked the doc more than once if I should try a different beta blocker and he said no. I've been thinking of upping my dose to see if it makes me feel any better. I don't know. I tried atenolol and it dropped my BP too much so I felt tired all of the time and more dizzy, but I don't remember my breathing being affected too much. I hope it helps you. Seems that the drugs for dysautonomia are just trial and error for which one will work and which one makes it worse. Good luck!!

I have a wheeze that feels like it's in my throat (not all of the time, it comes and goes). I told the pulmonologist and he didn't say anything about it. I just had my second PFT yesterday and the tech said it was normal. My ENT said my vocal cords were a little irritated looking, probably from reflux. My gastro said I didn't have reflux. So who knows??? I'm about ready to give up on all the testing and just say it's the dysautonomia. I have a referral to another neuro so maybe he'll know what's going on?? Have you been to a pulmonologist? Mine said the only other thing he could do was a bronchoscopy which involves sedation, so I don't think I'm going to do it. Especially with my repeat PFT being normal. I don't feel normal though

Hmmm, interesting. I'll have to google that. I've been thinking of going to physical therapy anyway to get some exercises that I can do. I feel like I'm just getting more and more deconditioned Do you know anything about what's going on with the vagus nerve when it's acting up? It is being pinched? Over stimulated? Under stimulated? I don't really understand much of how it works. Thanks

So sorry that your doctor didn't seem to listen to you. I always have high expectations heading into a doctors appt and then leave disappointed like I wasted my time (and money). I've only been searching for answers for about a year and I'm totally frustrated, so I can't imagine how you must feel searching for even longer. I agree a new neurologist sounds like a good place to start fresh. Good luck and hugs to you.

I had done a little reading about the vagus nerve before my last neuro appt and I asked him if it could be causing all my symptoms and he said no. But, from what I read it branches off to the trachea, esophagus, lungs, diaphram--all places that I feel pressure/tightness. I don't think there's anything they can do for it anyway, right??? The pulmo wants me to repeat the breathing test because he thinks I didn't do it right the first time. Now that I have had one before, I should be better at it the second time around. Weird thing is, that I usually do not have the shortness of breath when I'm at the doctors or when I was doing the breathing test, so I wonder what it would look like when I was really feeling it?

I've read that before on here, that beta blockers made people's breathing worse. I don't know what I'd do about my heart rate though if I didn't take it??? I did a little self-trial of taking Zyrtec for a few days to see if it helped my breathing any. It didn't. I looked up the myositises. Sounds like a possibility. I had a serum CPK recently that was normal. Something to think about though--thanks.

Yes, that's it. I did a whole set of breathing in and out of a tube, and then had an inhaler and performed the same tests again. It showed that my "maximum voluntary ventilation was reduced which is consistent with respiratory muscle weakness."

Interesting that you mentioned Guillian-Barre. I had thought of that several years ago after I got a flu shot--I had pain and numbness/tingling in the arm that I got the shot. Then tingling in my left foot. I still have that now. When I read about Guillian-Barre though, it sounds very debilitating. I'm still working, driving, etc. There's so many of our symptoms that could be any number of diseases/syndromes. It gets so confusing at times. I bought a finger pulse-oximeter a while back to be sure my oxygen levels were ok, so I just ignored the shortness of breath since my O2 levels were ok. But now, I can't really ignore it anymore. I guess I'll go ahead and do the repeat pulmonary function test, but I don't think I'll have the bronchoscopy. Thanks all!

The doc just did a regular pulmonary function test. The pulmonologist wants to repeat it, thinking it might really be normal. My heart rate stays around 70 sitting and 80 standing, but I'm on a beta blocker (before that it was resting around 100, standing was over 100). Thanks

For those of you with breathing issues, did you push to be tested (and what tests did you have?) or did you just chalk it up to dysautonomia and accept it? My primary doc sent me for a pulmonary function test that was interpreted as "possible neuromuscular disease" and she referred me to a pulmonologist. He wants to repeat the test and then he said about the only other thing he could do was a bronchoscopy to look down in the bronch tubes. So, to me that's just looking for an obstruction. My symptoms come and go, so I don't think there's anything structurally wrong in there. So, I don't know what to do? Do the testing or just say it's 'probably' the dysautonomia? I have tightness in my chest and throat and get short of breath when standing and in the heat (shower and when it's hot/humid outside). Also, just walking around a store. I had a TEE (transesophogeal echocardiogram) that my neurologist ordered back in january when he was thinking that maybe I'd had a TIA, that said I have an intrapulmonary shunt, but the pulmonologist said that that would not be causing my symptoms. I'm just so sick of doctors and most of my tests have been normal, I feel like it's just the dysautonomia and there's nothing that can really be done about it anyway

Hi all, I'm looking for a primary care doc that knows something about dysautonomia in the Nashville area. My primary care dr is clueless, my neurologist has not been much help, and my cardiologist has dismissed me until next year (just take this beta blocker and see me next year). I really don't think I'm bad enough to go to Vandy, but would like to have a doctor that knows more than the ones I have seen so far. If anyone has a suggestion, please let me know. Thanks!

I have pain/tightness in my throat and upper stomach and wonder if it's just from the neuropathy (thought I haven't been diagnosed yet). I had an upper GI and the dr said I didn't have an acid damage. Sorry you've had a bad month. Seems like you're doing as much as you can, but I know it's frustrating. I feel like I'm always just waiting for the next doctor's appt. and then it's a let down when it's over. Hang in there!

You'll just have to try it and see how it affects you. Atenolol did make me more dizzy and tired and decreased my blood pressure into the 90/50 range. Then I tried acebutalol and I had an episode of slow breathing with that one. Next I tried betaxolol and have stuck with it. I had a near-syncope episode while on that so my doc added midodrine. Unfortunately finding a med that works for you is trial and error. Just hang in there and don't be afraid to call the dr's office and let them know how you're feeling--you might need a change. My doc said he had a whole list of bb's and we'd just go down the list. Good luck

No, I haven't been checked---yet. I had a pulmonary function test recently that suggested possible neuromuscular disease, so I'm wondering what my next testing will be. My neuro said it could be neuropathy or myasthenia gravis. He did lab work for MG and it was negative, so I'm assuming at my next appt he'll do testing for neuropathy.