briarrose

I try to visit Chris Caulder's web page (Potsweb) as he is always posting new info, it was by far my favorite web page when first diagnosed with POTS! Today I went to it for the weblink to post here for someone and see that he has more new info. So if any of you have CFS too, you'll love this http://home.att.net/~potsweb/POTS.html News: Lower Serum Zinc in Chronic Fatigue Syndrome: Relationship to Immune Dysfunction News: More confirmation of CFS" "A chronic fatigue syndrome - related proteome in human cerebrospinal fluid." News: New study confirms earlier research that gene expression is a way to test for Chronic Fatigue Syndrome (CDC's earlier finding) News: Research: Spinal Fluid Abnormalities in Patients with Chronic Fatigue Syndrome I would love to thank Chris Caulder personally for this great website!

Here are some of my favorite weblinks that might be helpful to you, most of them taken from the pinned page http://home.att.net/~potsweb/POTS.html Free download "Handbook of Dysautonomia" http://www.ndrf.org/NDRFHandbook.htm American Family Physician's Article on Orthostatic Hypotension http://www.aafp.org/afp/20031215/2393.html Overview of POTS http://www.dinet.org/pots_an_overview.htm Symptoms http://www.dinet.org/symptoms.htm Oh forgot to mention - Showers, being out in the sun, hot tubbing, generally overheating, those are all things that make POTS symptoms worse. Joint/Muscle pain are common complaints of Dysautonomia. After over 10 years of severe pain and several different medications, Dr. Grubb finally put me on Neurontin (often used for diabetics pain issues) and it has been a wonder drug for me personally. You might also want to use the search button at the top of the page and search for past posts regarding your posting as many of the things you've mentioned have been talked about before. Your definitely not alone! My mom is an RN and use to acutally pass out at work walking from patient room to patient room. They spent several years trying to diagnose her and kept telling her that they couldn't find anything wrong. After they finally diagnosed me they went back and diagnosed her with NMH & mild POTS. Good luck Steph

It's a misconception that blood pressure will drop with tachycardia if it's POTS. That's NOT the case. True POTS usually has NO drop in blood pressure or a very slight drop. If you develop the drops in Blood pressure it's called Neurally Mediated Hypotension (NMH) or Orthostatic Intolerance. Be very Careful because there seem to be only a few doctor's in the world that really understand, know the difference and have pretty successful treatments! I too work in the health care profession as a Health Unit Coordinator and I've spoke with dozens of doctor's about Dysautonomia and the different types there of and NONE of them knew the symptoms or anything about the different Dysautonomias. Seek out an EPS specialist and when you have your appointment ask them if they are familiar with Dysautonomia, POTS, NMH, and if they've ever treated anyone with those diagnosis. Steer clear of having a pacer put in, very bad for POTS patients. A tilt table would be helpful and Hopefully the Cardiologist knows how to interpret the results properally. Be well informed and read as much as you can because in the end you will have to advocate for everything you get. Mighty Mouse has pinned a ton of information at the top of the forum/discussion page. You will find plenty of information to help.

hmichel That was too funny! You're allergic now

Joint pain is such a bad symptom for me. It's one that plagues me nearly every day of my life. It gets so bad that I can barely walk at times and it hurts to hold a pen and write. I have the kids peel all the veggies now because it's tough to even do that. My Sed rates & other rheumatology tests have all come back fairly normal too. I remember when my joint pain was the worst, my sed rate was at the very highest end of normal (The doctor told me that he would expect that for my age) Well just recently I had another Sed rate and it was nearly zero. I wish he would've listened to me when I said that just because I was in a normal reference range, didn't mean I wasn't suffering Who comes up with reference ranges anyway & does that take in to account all people? Anyway, the first time that I went to see my Autonomic specialist he was leaning towards EDS, the second time I saw him he was thinking joint hypermobility. He put me on Neurontin, what a great drug that helps tremendously with the pain. It's better than a pain killer! My autonomic doc also said that kind of pain can be caused by overstimiulation of the neurotransmitters. Good luck & I hope you find some answers. Steph

Hayley I too hope that you continue to seek answers, especially if in your heart you believe that you've been misdiagnosed. Sometimes doctor's try to make us sick in the head because they don't know how to do their job & understanding of Dysautonomia or other "REAL" illness! I've posted these before and I can't stress how great they both are!!! PLEASE - read these 2 true life stories, they might be very inspirational and just the boost you need http://www.cfids-cab.org/MESA/Hillenbrand.html Sorry this one took me a while to find and I just had to pull it from my original post. http://dinet.ipbhost.com/index.php?showtopic=1966&hl=Lyme Good luck Steph

I have very high cholesterol but the doctor's have determined that it's hereditary, not diet.

I'm sorry that you are feeling so bad. Hang in there and know that it will get better. This is just Par for the course and some things work and others don't but you have to stick it out and be tough I know what it feels like to be the Dysautonomia Guinea Pig. That's what i should have made my Log in name It tough going through a zillion medications while you're waiting to feel better. I've been through around 6 different beta blockers. And I've tried at least 5 other medications that have caused me to have severe side effects, All which I hoped would be my savior from symptoms of Dysautonomia. Let me know how you are doing & I would be more than happy to come over and visit if you would like. Steph

Congratulations on your success! I take Epogen injections and feel so much better. The combination Epogen & IV Iron give me energy & life back. Speaking of which, do you know what your iron level is? I took Epogen for nearly 4 months without any effect and it was because I had nearly ZERO iron in my blood. And Epogen doesn't work without adequate iron. Did you experience the severe pain with your injection? If you did you can ask for a prescription of EMLA cream to use 20-30 mins before injection, It helps a lot.

bump for the new guys

Beta blockers are absolutely important if you suffer from the tachycardia. It's not good to let your heart have uncontrolled tachycardia all the time. You can start with a very small dose of beta blocker and there are several out there. I personally have been through 5-7 different types. I'm not very familiar with homeopath but feel they wouldn't be very beneficial in this situation. An EPS, Dysautonomia doc and a primary care doc are going to be your best combination of doctors. Some doctor's do work on a sliding scale and does the state you live in provide any insurance coverage for the situation you're in. Most Cities also have CFS support groups, it might be worth checking into because they might be able to give you all the in's and outs of the illness, docs, medications & financial support. Take care Steph

I have to agree with Jacquie that somedays when I'm 90/50 I feel alright and other days I can hardly function. I normally run in the 90's. My lowest recorded pressure is 60/40 and that was laying on the floor because I couldn't even sit upright. My really good days I hit 120/60. I take Florinef, additional salt and Epogen injections to help increase my pressure.

This is a great book & the download is free http://www.ndrf.org/Reference.htm

I used Pepcid and Maloxx for years but this past summer my stomach got worse and the doctors switched me to Protonix. It's been a wonderful relief and I'm even able to eat foods that I haven't enjoyed in years!

It was more common for me earlier on. My doctor even had me putting my hand in a splint at night. I use to experience in my feet all of the time, sleeping or not. I don't know what the answer was and not sure what cured it. But think it's a combination of my current treatments. I had low blood volume and anemia that has been since corrected. I haven't experienced the night time symptoms for quite sometime now. good luck Steph

Swimming is the most recommended exercise for POTS patients. Only 15-20 minutes about 3x's a week.

Simon - Welcome! It sounds like you need an event monitor, either a king of hearts that you can push the button and it records what your heart is doing right then OR a Holter Monitor which gives 24-48 hours of continous rhythm monitoring. It would be helpful to know what your other symptoms are even if you are managing them. As for the arrhythmia itself, I've found that a beta blocker not only helps with my tachycardia but it also helps prevent much of the arrhythmia that I have experienced. Beware that if you are like most Dysautonomia patients that are medication sensitive, you may only need a very small dose to manage your symptoms. If the doctor's aren't that aware of your illness they might try to start you on too high of a loading dose. Note - I'm not a medical professional but this is just my own experience. Even in the US, there are very few doctor's that know about Dysautonomia and even fewer that know how to manage our symptoms. So don't give up just because you haven't found the right doc yet. Actually there are only a handful of specialists I believe all over the world. Make sure you are drinking plenty of fluids. Many of us need higher sodium intake without sugar. And Caffeine can be tricky on the system too, causing arrhythmia. Good luck Steph

Immunizations, a necessary evil. I'm grateful on many levels that we have immunizations to protect us from some of the horrible viruses that lerk. I think that often it's the preservatives in immunizations that have been a problem and I know drug companies have been working on this for years as they have eliminated or decreased the use of Mercury in the vaccine. Reaction from immunization is an individual response and there is no way to predict who is going to have complications/side effects from vaccination. BTW, my experience with Meningitis vaccine has been this - When my eldest son went off to college in Washington State I called his peditrician and talked to them about him getting the meningitis vaccine, especially since it's the West coast that is hit pretty hard by outbreaks of Meningitis. They told me that the vaccine they were using (this was 3 years ago) wasn't very effective and they Recommended NOT getting it. Personally, I had a reaction from the Hepatitis series. Then in late October of 2001 when I got my flu shot I had an immediate reaction from it, I was sick for over 3 weeks before the tachycardia hit me. I reported my vaccination reaction to the national reporting center here in the US and made a report at work. Eventually I saw an allergist doc that told me that my reaction to the flu shot was probably Guillain-Barr? reaction. 6 months after my symptoms started a doctor hinted to me that they thought I had something called POTS. The doctors have tried since to give me a flu vaccine by giving it to me in half dose one week and the other half the next. My system can't tolerate it and I've been advised not to get it anymore. So was it the flu vaccine that pushed my body over the top? Who knows and I'm tired of speculating especially since there are other members of my family with POTS. I stopped trying to figure out if it was genetic or environmental. I didn't tell you any of this to scare you and I'm not an Immunization Nazi, I think that some vaccines are necessary to protect us from worse. I think the more information you have the better you will be and get them well before travel so you have time to deal with any side effect you might possibly have. Who knows things might go well and the worst thing you'll experience is a little soreness from the injection itself. Good luck! Steph

There aren't any Dysautonomia Docs on the West Coast, I've put countless hours, phone calls and have searched at length for a few years now. I was teased with the prospect of finding a couple in California but when I called down there it turned out to be a waste of time. The funny thing is you would think there would be some up at the University of Washington Medical school, especially since the GNome project is there. Rumor has it that the VA Hospital in Portland has one of the largest Gulf War Syndrome labs in the country but they also don't take civilians.

For those of you that mentioned this before http://www.rapidtest.com/IgE_1801.doc I took this from text - Decreased levels of IgE are found in cases of hypogammaglobulinemia, autoimmune diseases, ulcerative colitis, hepatitis, cancer, and malaria.

The Pregnancy topic should have included family history of Dysautonomia but first onset of symptoms started in pregnancy and probably the combination hypotension/syncope. I should go on to say that I noticed my first symptoms in pregnancy with syncopal periods. But the full onset of POTS didn't occur until after a flu vaccine in 2001. There are other members of my family that also have POTS. So it would be very difficult to sort this one out.

Congratulations on your visit today. I'm glad that you found a doctor that knows what he's doing As for your medications, I take a very low dose of Florinef, Zoloft and had a reaction to the Midodrine so I can't take it. I only take 12.5 mg of Zoloft, I think the starting dose for a psychiatric patient is about 100 mg. I don't really notice any difference while I'm on it but maybe it does help. I take a half a tablet of Florinef, can't remember why I don't take more at the moment but it was too much. I'm extremely medication sensitive. I too suffer from low blood pressure and tachycardia. But I worry about him taking you off a beta blocker all together. I couldn't take Toprol, it dropped my heart rate into the 40's and maybe me sleepy all the time. If you have problems with Tachycardia after you stop taking your BB, ask him if you can try something else like Atenolol. Are you anemic at all? I'm wondering if that is causing some of your blood pressure, heart rate problems. Good luck and again congrats on finding someone that can be helpful. Steph

Dysautonomia's POTS is with Tachycardia NCS is Syncope, usually caused by drop in blood pressure and sometimes a plumment in heart rate. OI is Orthostatic Intolerance, change in position causes symptoms.

Here are the definitions of NCS/POTS http://www.potsplace.com/

Absolutely! this is a horrible problem. But there has been a recent post about it so if you use the search button, you can see the many responses. thx steph