jackiemxoxo

I do not have an answer for you but I empathize with what you are going through. Tachycardia is my worst symptom as well and it makes everything more difficult. When I first got sick a year and a half ago my symptoms and heart rate numbers were similar to yours. Nothing I did helped and I was in the hospital for 2 weeks because of it. I got tested for pheo too amongst other things. all negative. Make sure you have a good doctor who will test you for everything because you never know what could be the underlying cause. I think with pots too weird things set off heart rate like an allergy, sickness, not enough sleep.. anything and everything. It took about 4 months before my heart rate slowed down some. Now I am at 80 lying down and 120+ standing. My neuro-endocrinologist just said I have an overactivity of the sympathetic nervous system. I hope you find some answers.

I just did this too at the hematologist a week ago. He said that he was going to leave me with just enough blood to get home. At least it does mean they are testing for a lot. I found out that I have a vitamin d deficiency, sjogren's, and probably celiac even though test is not back yet.. he put me on a 12 week gluten free diet. I hope you get some helpful results as well!

When I first got sick they noticed an atrial tachycardia just when I stood up. I also had arrhythmia's and was referred to an electrophysiologist. He really wanted to do an ablation and thought it would help me. Luckily I did not have the procedure done because it can make POTS worse and he did not know much about dysautonomia. I think you have to be careful about some cardiologists cause although they can be the most helpful about treating dysautonomia's heart symptoms they can also be unfamiliar about it. Also, because the heart is working so hard and beating so fast it can cause irregular heart beats. Hopefully your neurologist or as I went to a neuro-endocrinologist can help you figure out something. My only recommendation after getting sick is be careful what surgeries you get because I ended up with no gallbladder and almost an ablation before they started realizing it is all connected.

I also have a hiatal hernia which was seen when i had an endoscopy last year and they said not much i could do about fixing it.

from my experience, when I was put on paxil it was by a cardiologist and he said it helps restart the autonomic system. I am not sure exactly how it does but it seems to help. I noticed the heart pain got better and i had a little more energy to walk around more. I kind of felt jittery when I first started taking it though.

I have taken inderal before and I thought it worked better than a lot of the other beta blockers.. I was allergic to toperal and coreg though so I was not on them for very long. When I took inderal, I only needed a small dose because I am so hypersensitive to medication which can happen with POTS. Also, the electrophysiologist told me that people seem to respond better to the kind that isnt extended release. What I liked about inderal is that I could break it up and take more or less when needed. Also, if you have headaches, youll notice that you wont have as many if any. Sometimes they prescribe inderal for migraines. Hope this helps.

I can totally relate to this post. Going to bed at night is the worst because of the forceful heartbeat.

I did not find that article but this was pretty good about the off label uses of ssri's... http://www.aafp.org/afp/2003/0801/p498.html It has a whole section on how they might help.. "SSRIs appear to be effective in some patients with neurocardiogenic syncope that is refractory to standard therapies. Clinical experience supported by ongoing research continues to expand on the broad array of therapeutic applications for this class of medication..." From my experience, I think the SSRI's did help with chest pain and autonomic dysfunction. I did not stay on them long term because they made my pupils dilate too much and the doctor wanted to see if that would go away when I stopped them. I was also on florinef and propanolol at the time though so the combination helped. I also had ocreotide shots in the hospitals that helped tremendously at first but eventually were not needed. I also had c.diff though so a lot of the blood was traveling to my splanchnic region and explained why i needed the ocreotide shots. I would rule out any other GI causes just to make sure they aren't contributing to the pooling of blood in your splanchnic region... those are just my thoughts. hope you find your article

O Positive

I agree that symptoms are worse during ovulation. I'm wondering for those that have kids, how did POTS/Autonomic dysfunction affect pregnancy?

I see the neuroendocrinologist for my autonomic neuropathy issues. He was the one that actually diagnosed me after numerous testing. I did the cannes test (sp?) where you hold your breathe, breathe normal, and also tests valsava maneuver. He also does neurological tests (ex: can you feel this, and strengths), and blood pressure/pulse lying down, sitting, and standing. He is the only one that is helpful for the autonomic neuropathy but it seems he spends more time on research then actual solutions. He also takes blood and I dont know what tests he runs on it but he seems to think my autonomic neuropathy is not auto immune but caused by a virus cause of its sudden onset. I would say to see a neuro-endocrinologist if you think it would be helpful because I dont know what other doctors you go to for this unless you're by mayo or vanderbuilt. In the beginning, he also tested me for heavy metal poisoning, neurofibromatosis, adrenal tumors, etc... so I would say they are good at ruling stuff out.

I am interested in the topics of hives related to dysautonomia too. It seems this week is when my relapse in autonomic neuropathy occurred and it started with hives. I broke out into hives for 3 days, took xyzal and my tachycardia and other autonomic symptoms seem to get really bad. I thought it was the xyzal doing it but after stopping the medication, I am still couch ridden and cannot stand up for very long. 2 doctors appt this week which prob wont tell me much bcuz no one seems to know anything about dysautonomia. I really wonder if hives have any relation to dysautonomia?

I had my gallbladder removed last year because it was not working and I was having pain. My neuro endocrinologist told me that it was not working due to the dysautonomia which causes it to be sluggish along with other things like your appendix.In reality, it probably did not have to be removed but they thought it was causing other symptoms. I developed gastroparesis shortly after and could not eat for 2 months. Also contracted C.diff at the hospital during the gallbladder removal which probably cured my gastroparesis but was ridiculously hard to get rid of and caused me to be hypovolemic and hospitalized. Currently (a year later), I suffer from bile salt diarrhea and sharp intestinal pains. I think its from having the gallbladder removed and I took that binding stuff but it did not seem to help much. I think there is def a connection between dysautonomia and gall bladder dysfunction.

Hi I'm new but I thought I'd respond to this post. I have autonomic neuropathy & POTS and I think lexapro helped initially. At first the cardiologist started me on Paxil to "restart the autonomic nervous system" ssri's seem to do that well. It helped but it was really strong and I felt too drugged. It also made me feel agitated like I had restless leg syndrome. The lexapro was better because I seem to be hypersensitive to drugs and that one was not as strong. Eventually though the doctors wanted to see me off of it because it was making me too sympathetic and my eyes were too dilated and pupils were sluggish. I think antidepressants/antianxiety medications are really good drugs because they work on the parasympathetic/sympathetic systems. Good luck on taking this med and thanks for sharing.