dkd

Have you tried a beta blocker? I tried three different ones before I settled on one that didn't make me too tired. It definitely keeps my HR down so that my blood pressure stays more normal. But according to my TTT, my heart rate goes up and blood pressure drops, or visa versa, not sure which one comes first.

I'm in that 80% that does not know. After 10 different doctors and $7000 in deductibles, I gave up on searching for an answer. I was put on beta blocker/midodrine by EP cardiologist and feel a little better. At least my HR is under control. Sometimes I think about trying to figure it out again, but I have another $5000 deductible for this year. I've always had a higher-ish resting heart rate, but it really seemed to get worse after a flu shot in 2010. I also had neurological symptoms start then (nerve pain, numbness, tingling).

They will probably do an EKG to check your heart rhythm and hopefully schedule to do a tilt table test. Maybe a Holter monitor for a few days also. It is a good idea to write everything down that you want to present as symptoms in case you forget something. I always get back to my car after the appointment and remember something that I meant to say or ask about. An electrophyisiologist (EP) is a cardiologist who specializes in heart rhythm so hopefully you'll get to see one of those. Some cardio testing I've had: several EKGs, 48 hr holter monitor, treadmill stress test, nuclear stress test, transesophogeal echocardiogram, tilt table test. I think that's all--that's quite enough-haha!! Good luck and I hope it's a productive appointment. Let us know!!

I have tingling in my left hand (index and middle fingers), left foot, and left side of my lips and nose. I have not had any testing for neuropathy. A 'consulting' neurologist said he does see tingling on one side of the body in some women and there's really nothing that they can do about it and not to worry about it. Easy for him to say!! At first I was worried about TIA/stroke or MS and he did not think I had either of those problems (brain MRI normal). I left there with the feeling that, well, I guess it's going to get better or it's going to get worse--guess there's nothing I can do about it. It is very annoying, especially on the face. I hope you find some relief!!

I know you're frustrated because I've been there myself. I even told my GP that I needed someone to look at the whole picture and she just told me she'd sent me to a specialist for whatever symptom is bothering me, so she really didn't have a clue. That said, I think I've told you before, an electrophysiologist is who diagnosed me, so if you go to a cardiologist (which I think is a good idea), ask to see the EP in the group. Any cardiology group should have at least one EP in the group. Mine looked back at my holter monitor results that I had been told were "within normal limits" by my GP, and said "I think you have dysautonomia". So just because they (your neurologist??) said your holter was ok, maybe there's something the EP will pick up on. I went to 10 different doctors in a year and had lots of testing that was normal and I still feel like I'm not at the root of my problem. You just gotta hang in there. I still don't know the reason or cause of my dysautonomia and I've come to realize that I probably won't ever know, but I feel better with my treatment. I'm thinking you had a referral for Vanderbilt (???). Maybe they can figure it out. *fingers crossed*

I have been totally let down by my GP. So much so, that I do not want to go back to her so I'm kind of without one right now. I wanted her to look at 'the whole picture' and tie everything together, but her response was to just give me an anti-depressant. I think she can only handle things like : diabetes, thyroid issues, high blood pressure--you know the "easy stuff" (not to offend anyone that has one of these issues, but they are mostly more straight forward) --something they can give a pill and it'll get better. For chronic unknown stuff like we have, they don't know what to do. Mine did do a pulmonary test at her office, but then she sent me to a pulmonologist. That's probably your best option right now. Best wishes!!

I don't know anything about this test, but the other day I found a piece of paper that I had scribbled down some notes on and one of them was 'ganglioside antibody test'. I guess I read somewhere that it could be a useful test??? Please let us know when you find out what it means. I hope it's a useful piece of your puzzle.

Yes, I had blood tests: acetylcholine receptor binding antibody, anti striated muscle antibody, and a creatine kinase. All normal/negative. Are you going to get it checked out? I was referred to a different neuro and he just did the regular neuro eval (checked reflexes, had me push/pull against his hands, checked my eyes) and said that he didn't think I had anything neuromuscular. I think he should have done more. If you go, let us know how it went and what they check you for.

Was this a treadmill test? I've had a stress test and pulmonary function tests, but not at the same time. My first pulmonary test said "suggestive of neuromuscular disease" because I had some air trapping. My second pulmonary test was normal, so the pulmo said I was ok. I still have shortness of breath when I do just about anything. So, I don't feel ok My neuro ordered a test for MG, but it was negative. I think I might have something neuromuscular, but I haven't investigated it any further. The last few days, I've felt like my diaphragm is in a spasm, really tight. I don't know which doc to go to so I sit here not going to any of them. Did your doc recommend what to do??

This is unrelated to dysautonomia but when I was pregnant with my daughter, I was having premature labor and in the hospital. They tried to give me a medication to decrease the contractions, but it's something that increases heart rate so if your heart rate reaches a certain level, they can't give you anymore medication. I can't remember exactly my HR, but I remember my BP being 70/35 and I asked the nurse "how low does it have to get before you die?" She didn't give me an answer.

BUN and creatinine are usually elevated in dehydration, so I'm thinking that's what you're thinking of. Also your hematocrit can be higher due to lower plasma volume. At least they gave you some fluids anyway. So sorry to hear that you aren't feeling any better. I was hoping after you got those new doctors they were going to help you more

I take 2.5 also. My doc told me to bump it up to 5 if I wanted to but it gave me major goosebumps and tingly head, so I just kept it at 2.5.

There's pinned topic at the top of the forum about a brochure for doctors. Silly me, I can't seem to copy and paste the link--but it's at the top of the forum page, third topic down "doctor education project".

Now that she knows what to expect maybe she won't be so anxious the next time--hopefully.

Revisting my thread---Last Friday was FREE FOOD at work so I couldn't pass that up, right??? We had sub sandwiches and big cookies and pizza-- I totally glutened out--haha. So, my itching returned, I felt bad, bloated, constipated, stomach pains. I don't think I need to be tested. I'm pretty sure I'm allergic or intolerant. I'm just now feeling better today. I don't think it affected my other dysautonomia symptoms, but it definitely affected my body. So back to gluten free for me!!

Honestly, because everyone is so different, the only real way to know how it will affect you is to try it. I tried Lexapro and it made me worse. It intensified my symptoms a lot. My primary care then gave me samples of Cymbalta to try and I haven't tried it yet. I keep waiting for a day when I can just stay home and not have to go anywhere to see how it affects me, but it seems I can't find a day that I just have nothing to do.

Sorry your apt didn't go well. I've had so many of those too and I know how disappointing it is. I was diagnosed by an EP, so my opinion is go to the EP The regular cardiologist that I saw didn't pick up on the dysautonomia at all, but the EP saw it right away from all of the data that the regular cardio had seen also. I know how horrible it is to go into an appointment thinking this will finally be the 'one' where they have the answers and you can feel better soon, and then you leave without anything and you're just the same.

All of my 'crashes' or 'spells' have been while sitting or lying down with the same symptoms that you described. Haven't had one since starting beta blocker and midodrine though--knock wood!!! My cardiologist didn't offer any explanation of why it happens when lying down. I've had other doctors says it doesn't make sense that it's dysautonomia if it happens when lying down (I guess they think you can only have symptoms when standing???)

I have had 2 emgs on my arms in the last 3 or so years and they only showed mild carpal tunnel in both hands. I have numbness all the time in my left index and middle fingers and tingling in left hand when I lie down at night. I don't think it's carpal tunnel and I don't think it's dysautonomia related. I do have degenerative discs and stenosis in my neck. One neurologist thinks that is the cause. Another neuro says my neck looks normal for someone my age (49) and doesn't think it's the cause, but he did not offer any other suggestions. The emg itself can be slightly painful--and expensive. Have you had an MRI of your neck? Also, I see in your sig line that you have Raynaud's. Can that cause tingling?? When I had my first emg, I was having terrible pain all down my left arm for about 3 months (following a flu shot-and pre-dysautonomia). The next day after the emg, my arm pain was 80% better. I don't know if something about the test zapped my nerves somewhat back to normal or what. I told the neuro and he said some people have told him that but he had no explanation for it. When I went for the second one, I was paranoid that it would make the pain come back (weird, I know) but luckily it did not! So, I don't know if the test was helpful at all in my situation, except the first one helped with my pain.

Haha--thanks for the laugh.

Mine is more like a pressure/tightness-like my lungs can't expand enough. I feel it all the way from the bottom of my sternum up into my throat. I wonder if it's muscle related? Like a muscle cramp??? It's mostly when I stand, but can be when sitting also. I don't have it when lying down or when I get up in the morning. I had a pulmonary function test at my regular doctor's office and it said "suggestive of neuromuscular disease" so she sent me to a pulmonologist. He repeated the test and said it was normal-???? So, I just gave up on trying to figure it out. I did buy a finger pulse-oximeter that measures your oxygen level on your fingertip and mine is always ok--so that gives me some peace of mind that I'm probably ok even though I feel like crap-haha.

My primary care dr is not very knowledgable (haha) so she probably couldn't help me (she hasn't so far). I really need to find a new doctor. Thanks for the info everyone!!

Thanks everyone for sharing your experience. I'm still sticking to it though it's hard when I go out to eat. I thought I was doing ok a couple of nights ago by ordering pad thai (rice noodles) but it must have had something with gluten in it (soy sauce maybe???) The main thing I was trying it for was an itchy rash on both sides of my abdomen, right above my hip bones. That seems to be better, so I was hoping for some relief of my dysautonomia symptoms also, but I haven't noticed any yet.

Sorry, what kind of doctor can diagnose EDS?

Have you called your neurologist to ask them about it??? I do have muscle twitching off and on. Each body part that it affects seems to last about two weeks. I've had them in my back, eyelids, calf, thigh, different places, even in my groin area (that's really weird too ). Yesterday it started in my right hand pinky finger. It is actually moving where I can see it. Usually it's a muscle that's pretty deep so I don't see it, only feel it. It comes and goes throughout the day. I was going to go to the doctor when it was in my back and then suddenly it just quit. I had a pulmonary test last year that was "suggestive of neuromuscular disease" . I was sent to a consulting neurologist and he did not think I had anything neuromuscular going on though. Please do call your neuro and see if they have any ideas or can get you in to see a specialist any sooner.