dkd

Has she had thyroid tests and glucose tests to rule out diabetes?

You should ask your doctor

My first cardiologist told me I was out of shape and I needed to exercise more. Luckily, when I called back to make an appointment after another syncope episode, he had left the practice and they put me with the Electrophysiologist in the group. Was your cardiologist an EP? I would definately go to another doctor! Good luck!

I have a friend who took it a few years back. She lost 30 lbs in a month, but when she quit taking it, she gained it all back plus some. She complained of insomnia, dry mouth and constipation when she was taking it. I was considering it, but since I have tachycardia already, I decided it was not a good idea.

I tried 3 different bb's before I settled on the one that worked. The first one made me way too tired and dropped my BP too low (90s/50s). The second one I was unsure about also and the third one (that's cardio specific) seems to be working well. Maybe ask your doc to try a different one? Or cut the dosage? My doc said he had a long list of bb's and we'd just go down the list til I found one that worked. I have gained weight which I am not happy about. (I exercised this morning and my heart rate doesn't even get to 100 while doing cardio.) For me , the bb is to keep my HR down. When I was standing, it would be around 120-130, now it's in the 80s. I still have other symptoms that it doesn't help.

I have been wondering about this also. I have been taking 5mg just once in the morning. My doc recently suggested I take 10mg twice per day because the recommended dosage is 10 mg three times per day. I have not noticed any difference in my symptoms, but I do have increased tingling on my scalp/head and goose bumps all over my body. That only lasts for a little while (< 1hr). I'm not sure that it's helping though, so this week I've started with 7.5 mg. The goose bumps are a little less with that dosage. Honestly, I've been thinking about not taking it anymore, so I'll be curious to hear other peoples experiences too

If it continues you should probably see a doctor. Could be a pinched nerve in your neck. I saw a neurologist and he ordered an MRI which showed degenerative discs and stenosis. I had horrible pain and am still left with numbness in two fingers. I should probably consult a surgeon but am terrified of surgery! Have you injured your neck recently? Been in a car accident. It could even be from sleeping in a weird position. I had no reason for it but just woke up one day in horrible pain. Best wishes!

An electrophysiologist cardiologist is who pick up on my dysautonomia. A 'regular' cardiologist just told me to exercise more Good luck with your appointment and let us know how it goes.

It certainly wouldn't hurt to mention the flexibility to the neuro. A friend told me once to tell "all" of my symptoms to every doctor that I go to and maybe one will be able to put it all together. I do feel your frustration of felling like each specialist is just looking at their part and not tying it all together. I went to my general practitioner and told her that, but she was no help A cardiologist was my biggest help. You didn't mention if you have tachycardia and blood pressure issues (unless I missed it). I still have symptoms and yes, they can only treat the symptoms--there is no cure unfortunately. I eventually gave up on trying to find a cause or reason for my dysautonomia. I spent almost two years, a lot of money in testing and 10 different doctors to just wind up on a beta blocker and midodrine. I don't have the GI issues like you though. I'm sure that is most miserable. Best wishes to you and welcome to the forum!

Sorry the appointment wasn't that great. I've lost my hope in doctors really. Actually I didn't have much hope in them to start with-haha. Hoping the new medicine will help!! *fingers crossed*

Best wishes to you and let us know how it goes. Maybe some fresh eyes and new doctors will see something different. Have a safe trip!

I wonder if the nitro caused the weird feeling? I found this online at drugs.com: When you begin to feel an attack of angina starting (chest pains, tightness or squeezing in the chest), sit down. Then place a sublingual tablet in your mouth or under your tongue. If you use the oral spray, you should spray it on or under the tongue. You may become dizzy, lightheaded, or faint soon after using a tablet or spray, so it is safer to sit rather than stand while the medicine is working. If you become dizzy or faint while sitting, take several deep breaths and bend forward with your head between your knees. Remain calm and you should feel better in a few minutes. http://www.drugs.com/cons/nitroglycerin-oral-sublingual.html

Thanks for giving us an update and I'm glad you finally got to the bottom of what was really wrong. I struggle everyday with wondering if there is something else really wrong that I should be getting checked out. I have even asked my cardiologist about pulmonary hypertension, but he didn't think so. I had a transesophogeal echo in Jan 2013 and it was normal, but that was at the start of my symptoms. Take care of yourself!!

I used to have a mini trampoline and then I had neck issues and my physical therapist told me it would be bad for my neck/spine, so I got rid of it. Also, I have read that walking also helps move the lymphatic fluid, so I'm not sure if I buy the hype of the rebounder being especially good for that. (I'm a skeptic in general-haha) I did feel like my legs got fairly toned up using it. Have fun with it!!

Isometrics are holding a position, like a plank or a wall sit (there are many others), for an amount of time. I used to do a lot of isometrics before I got my dysautonomia diagnosis. The important thing is to breathe (not hold your breath and strain) when you are doing anything isometric. Since you've tested it, maybe you should just avoid them all together. I now use light hand weights and resistance bands to do just basic exercises (dumb bell curls, triceps kickbacks, shoulder raises). Just be sure to not hold your breath. Also squats and calf raises seem ok for me. I used to follow videos too and I don't seem to have the energy anymore either. I never could do Taebo though-lol!!--even when I was in good shape!

Unfortunately, the beta blocker and midodrine have not helped with my shortness of breath. I had high hopes of that, but to no avail. They do keep my heart rate down and help with my syncope episodes though.

I feel like I have muscle tightness from the bottom of my sternum up into my throat, with shortness of breath. My primary care doc did a pulmonary function test which showed that I had 'air trapping' which was suggestive of neuromuscular disease. She then referred me to a pulmonologist which repeated the PFT and he said it was normal. Sometimes I feel like my diaphragm cramps up. I don't know what the cause is. I gave up trying to find out

That sounds exactly like my episodes. I usually stand up too! My cardio said I should lie down and put my feet up, but I get so panicked, that my instinct is to stand up and try to 'fight it'. Maybe try to put your feet up next time. I also try to take deep breaths and try to relax myself. It seems to pass after that. The very first time, I thought I was having a stroke or something and I totally freaked-called 911- but was better by the time they got there. Luckily since being on a beta blocker and midodrine, I've not had anymore of these episodes. However, with you taking prednisone, that very well could be the culprit.

Hmmm. Sounds like maybe a blood vessel burst?? The morning that I had my first NCS episode, a blood vessel broke on the bottom of my big toe. It's really painful--like a knife is sticking in you. It didn't make a lump, but it did have a nasty bruise. I don't know if it's related to the onset of my NCS, but I always tell doctors about it. They just look at me with a puzzled look though. Could also be possibly a tendon rupture??? I've heard when they break, it balls up and makes a knot. Hope you feel better soon!

I take a beta-1 selective bb (betaxolol) and it hasn't affected my sleep. I read something about the non-selective ones can cause sleep disturbance and nightmares/weird dreams (especially propranolol). I'm sure if you google you can find something that says to that effect. So maybe your doc could try a cardio-selective one. Good luck!

Sarah, has no doctor investigated the high calcium yet? I would ask for a phosphorus, a PTH (parathyroid hormone) and a magnesium. An endocrinologist would be a good doc to go to or your general practitioner could do the lab work and then refer you if needed. Best wishes to you! I hope you get some answers soon! Edit: Oh, and a vitamin D level also

My beta blocker keeps my HR down so that part is better, but I still have other symptoms (mostly pressure in my throat and face and weird nerve sensations). I started on atenolol which made me extremely tired. Doc switched me to acebutalol next and I had a weird decreased respirations episode with that. Next I tried betaxolol and seem to be ok on it. I've taken it now for about a year and a half. When I started, he said there was a whole list of betas that I could try until I found one that 'worked'. I had high hopes of it fixing all of my symptoms, but it has not. Oh, and if you decide to try it and it doesn't work out, you can easily just quit taking it. They don't stay in your system very long.

I had always been healthy-didn't really have a doctor except for when I had my two kids. Oct 2012, I had a tingling/syncope episode and went to a internal medicine doc the next week. She ordered a treadmill stress test and I wore a Holter monitor for 48 hours. They told me my stress test was inconclusive because my heart rate was at 135 when they started so it didn't take very long for me to get to my target HR. They said the Holter was normal. She sent me to a cardiologist who did a nuclear stress test that was normal. He just told me to exercise more. Right after that, I had another episode in the shower with tingling on my face and dizziness, so I thought I might be having a TIA, so I called a neurologist. He did a brain MRI which was normal. He did some other blood work for Lymes disease, myasthenia gravis, clotting factors, other things I can't remember. He really did try to help me, but everything came up normal. He sent me to an endocrinologist, gastroenterologist, ear nose throat doc. Everything came back 'normal'. I had another pre-syncope episode and decided to go back to cardiology. The previous doc had left the practice so they gave me an appointment with the Electrophysiologist. He looked back at my records, especially the Holter monitor that I had been told was normal, and he said "I think you have dysautonomia". He ordered a tilt table test that confirmed it. I've been put on a beta blocker and midodrine. My heart rate is down, but I still have other symptoms that bother me (pressure across chest and up into face, fatigue, shortness of breath, ringing in ears, tingling on lips)

I don't really have any answers, but I do have a muscle that cramps when I'm in the shower. It's in my mid/lower back on my left side and it feels like it goes around to the front. It feels like it's my diaphragm, but I'm not sure. Once it cramped up so bad, I could hardly stand up straight. I mentioned it to a couple of doctors, but haven't gotten any comments/theories really. I haven't been swimming in years, so I don't know if it would happen in a pool or not. I seem to think mine is related to heat hitting the muscle. Pools are usually cooler, so I don't know?

I don't know if I have abdominal pooling or not, but I have a 'funny' feeling in my abdomen. I really don't know how to describe it, it just feels funny (weird). I have thought of getting a binder but haven't yet. I looked at them at the store the other day and thought they would not be very comfortable, so I didn't get one. I looked in the sporting goods dept at the ones that Velcro around you and I looked in the lingerie dept at the shapewear type garments. I would like to know also what kind people wear and if they help. I assume it helps some or people wouldn't wear them The day I was looking, it was sooo hot outside and I couldn't imagine walking around in a binder on such a hot day.