cgnursegirl

Hi, I live in NC and was wondering if anybody that lives in the NC/SC area knew of any good POTS doctors ? I am being treated by a cardio/EP in Wilmington but would like to be able to get a 2nd opinion if possible. My cardio was going to refer me to Dr.Caroline Klein who is an autonomic neurologist at UNC, but at the time she was out on a medical leave. I have no idea if she is back seeing patients or not. Does anybody see Dr.Klein and know if she is back ? Any docs in the Carolinas that you would recommend ? thanks

I find this interesting. I have acid reflux as well, and I have wondered if it was related to POTS. One thing I would add to the discussion is that PPI's can deplete magnesium, so you need to either take a Mg supplement or try other meds for acid reflux. I was taking prevacid until about 2 months ago, I was hospitalized and found out through my lab work that I was low in potassium and magnesium.

My cardiologist who is pretty knowledgeable on POTS said ALL vasodilating drugs that can basically lower BP are BAD for people with POTS. We need vaso-constricting drugs. He said a low dose of a beta-blocker is okay if it is taken with something like florinef or midodrine. Never take diuretics. Florinef helped with my symptoms and raised my BP. I am now on a low dose of metoprolol (beta-blocker) along with midodrine. I also take an SSRI and a benzo. I see in your signature that you have addison's and a renal disorder. Do you take florinef for your addison's disease ? I am also wondering if you can take all the cardiac drugs due to the renal disease, wondering if the body can process the drugs ? I am a student nurse and former anatomy teacher, not an MD, so I do not know everything about cardiology. I can say that I was on cardizem at one time as well as verapamil, and they actually raised my BP and HR. Like I said earlier, my new cardiologist says all vasodilating drugs can actually make POTS worse. I hope this helps. Feel better soon !

If I am that tachycardic, I will take an extra dose of beta-blocker or some Klonopin. and drink extra fluids. If that doesn't work, then it might be time to go to the ER or urgent care and get an IV. My cardiologists have thrown around the idea of a sinus node ablation or a pacemaker to lower my HR, they seem to want to keep it as a last resort option, but I might eventually have it done. I am sorry you are feeling so crappy. In my experience, if you go to the ER and tell them you have "orthostatic hypotension" they will generally understand your basic problem and give you IV fluids. Also having a note from your cardiologist for the ER doctors, to help explain your condition and what treatment is needed can be helpful. Good luck.

On the first TTT, my HR increased around 60-70 BPM and BP gradually went higher the longer I stood, along with the HR. This past year, I started fainting and having low BP. My latest TTT shows a HR increase of about 90 BPM and the BP rises and then drops into the toilet and I faint.

Cipro and Levaquin are in the same drug family. Both have gave me bad stomach pains and horrible joint and muscle pains. I finished the course of antibiotics, but I would prefer not to take them again. It seems that everyone reacts or doesn't react differently to antibiotics. I have several antibiotics I am allergic to, but I know others who can tolerate most antibiotics just fine. I guess it is your own chemical makeup of your body. And your immune system. Good luck with the cipro. I know how miserable UTI's can be. Very painful. I hope you feel better soon.

Yes, indeed.My hands and feet get cold, numb and tingly and sometimes outright painful. I also have restless legs syndrome. I cannot sit or lay still without my leg muscles throbbing and random muscle twitches. I have joint hypermobility and that can contribute alot to having painful joints. There is a strong correlation between having a diagnosis of CFS/FM and the dysautonomia disorders and having hypermobile joints. As far as I know, joint hypermobility is not serious, but it is painful and pain management treatments are often needed. I see a neurologist (who explained these things to me) and she said the numbness and tingling is probably due to nerve damage from the autonomic neuropathy. And the RLS and the JH is associated with the POTS that I have. I see a pain management doctor and he has helped me keep the pain under control, often with joint injections and also medicines. Maybe seeing a pain mgmt doctor could help you. I had to ask my primary care doc to give me a referral to the pain mgmt doc. I hope you can get to feeling better soon !

Have you seen an endocrinologist and been tested for adrenal gland tumors that could be secreting excess adrenaline ? When my local cardiologist was at his wits end, he referred me to an endocrinologist to rule adrenal tumors out. I did find out that I am hypothyroid, so it did help. Alpha and beta blockers can increase the BP in a rare type of adrenal tumor called pheochromocytoma. Thats what the endocrine doc said. It would be worth a try to have the testing done, at least you wouldn't lose anything if it turned out normal and the endocrinologist might be able to give you tips on treating the POTS, since florinef is actually FDA approved for addison's disease (adrenal gland failure).

In my former life, before POTS entered the scene, I taught anatomy and physiology as a college-level teaching assistant. The poll results actually look like the normal blood type distribution that is typical of the american population. The one comment I would add is that people who are Rh neg tend to have more problems with anemia and of course, pregnancy. It has been postulated that blood type has to do with tendencies toward certain illnesses and preferred diet types, but research has not proven this, so it is still in the realm of "pop-science". I looked at the blood type diet book, and alot of it has to do with your ethnic heritage and what types of foods and diseases tend to cause problems in your ethnic group. I do believe in the theory that ethnicity and genetics have alot to do with what illnesses we tend to develop, so there might actually be some good science behind the blood type theories, just give it time and the research will prove itself.

No bowel surgery(thank goodness). I had a NG tube and medicine in an IV. And a liquid diet. I have never been tested for MCAD, but I have severe allergies and asthma, and my allergist says he thinks my immune system is overactive and thats why I have so many allergies and autoimmune diseases. I am being treated at UNC hospitals and plan on asking for an allergy/immunology consult when I go back up there, to do some further testing, including immune deficiency, which I have met some people online who have POTS and immune def, and also allergy markers and mast cells. What exactly are the tests for MCAD ? I know basically what it is, but how do they test for it. I definately agree with you that it is an autoimmune issue where the immune system is triggered to be overactive and then calms down and we have to deal with the damage in the wake of the "immune system storm", so to speak.

Acetylcholine, or Ach is the neurotransmitter that binds to the synapse at the neuromuscular junction between the motor neuron and the motor plate on the muscle fibers, causing the muscles to contract. Ach is a major neurotransmitter, involved in all aspects of the central and peripheral nervous system. Mestinon is FDA approved for the disease myastenia gravis, in which the immune system damages the neuromuscular junction, therefore Ach cannot be released and the muscles cannot contract. However, as Ach is involved in the ANS function as well, it can cause the smooth muscles surrounding the blood vessels to contract and constrict the blood vessels, thereby raising the BP. It is prescribed off-label for dysautonomia diseases.

I have "seronegative spondyloarthropathy". It is a long term, but basically means arthritis like ankylosing spondylitis (another long word) that is inflammation of the spine, and shoulder and hip/pelvis bones, it can cause peripheral arthritis. The seronegative means that there are no positive inflammatory markers but I have inflammation and joint damage. It is autoimmune. I also have colitis and food allergies. It is supposedly associated with that. I was extensively tested and all I am given for it is naproxen and tramadol. I also have "peripheral neuropathy"--hand and foot nerve pain due to the autonomic damage. Sorry I don't have any pain relief advise--besides heat and staying warm, especially this time of year. I do hot baths, warm blankets, extra layers, etc. Icy Hot rub downs also help me. And using music and mental imagery or sort of a meditation type thing. Maybe you should ask for a rheumatology consult or nerve testing by a neurologist. I know your pain. I am hurting right now, laying down on the couch with my laptop. I hope you get relief soon.

I have had POTS for 7 years, been correctly diagnosed with it for about 1 year now. I have personally gotten way worse. I was in the hospital in August with a bowel obstruction/gastroparesis, could not eat for about a month afterwards without pain. Dehydrated and low BP and fainting. I am still fighting low BP and dehydration every day. I am now on midodrine 3x a day, it has stopped the fainting, but not much else. Also, when I was so sick, it threw my thyroid off (hypo) and I just figured that out about a week ago and have had to increase my synthroid replacement dose. I am now seeing cardiology and neurology at UNC-Chapel Hill. Never had low BP and fainting issues till this summer, I was actually high BP and called hyper-POTS, but now I am being called POTS with NMS and peripheral neuropathy (due to hand and foot nerve pain). Going to have some nerve testing done at UNC when I can see the neuro specialist that does that. I am not as symptomatic as I was in Aug, but certainly not as well as I was 6 months ago.

Yes to both questions. I have been in the hospital for dehydration due to antibiotic colitis. Hives and bronchospasm, epipen. I don't know why so many of us with dysautonomia react so strongly to medicine.

I too was on florinef but it raised my BP too high. Now I am on midodrine(ProAmatine) and the beta blocker metoprolol 25 mg twice a day. I also take paxil and klonopin every day. I think it would be worth a try to take to midodrine, and if it makes your BP go too high, you could always quit taking it. Good luck!

I have never been pregnant, but I went from 6 years of hyper-POTS to in July-August of this year, I was hospitalized for a bowel obstruction and severe dehydration/low BP/syncope and ever since my BP has been super-low and lots of fainting. I am now taking metoprolol 2x a day and midodrine to try and keep my BP up. It is still low, and I am still having near-syncope episodes and feeling yucky alot of the time.So yes, I don't know why, but I too agree that POTS can switch from high BP to low BP. My docs at UNC think that when I was in the hospital (finally diagnosed with colitis that caused the bowel obstruction) that it is an autoimmune disease and that the over activity of the immune system further damaged my autonomic nervous system. Pregnancy causes your immune system to behave differently so your body will not reject the baby. Maybe the autoimmune part of pregnancy could have caused your POTS and BP to switch. Just a thought !

Hi, I live in NC and I am currently being treated by UNC Cardiology for POTS and NMS. I am 25 years old. I know your daughter is still a teenager, but I was wondering if you knew if there were any adult doctors who specialized in dysautonomia at Duke ? I have been helped somewhat by UNC cardiology but the wait to get in to see a neurologist who can do testing on the ANS is forever. The doctor who ran the autonomic disorders clinic at UNC is on an extended leave and another neurologist has taken over for her. I am supposed to get an appt with this doc, but I am being told it will probably be next year by the time I can get an opening. I am glad your daughter got such good results from Dr. Kanter. I live in the Wilmington area, and I know of a few young adults who were treated by him, and they highly recommended him, so obviously people come from all over NC to see him. Has Dr.Kanter mentioned who he might want to be your daughter's adult cardiologist if she decides to stay in NC ? Just wondering. I feel like I need to explore other options than just waiting for myself to get sicker and waiting forever to see a doctor. Thank you !

Hi, i live in NC. There is a big building in Raleigh--Richard Flexner. The Flexner law firm. I have no idea whether or not this guy and his associates have heard of POTS, but I see the commercial for these disability lawyers all the time and I live in the Wilmington area. I am sure that as a lawyer prepares the legal background for their case, they would have to research their client's medical condition so they could defend them in court. Do you live in the triangle area ? What hospital do you go to ? I go to UNC Cardiology clinic at Meadowmont. I am sure your doctor would make a statement or something to help you with your case. Wishing you well and hoping everything turns out for the best.