Dizzy Dame

Hi John, A systolic BP falling more than 20 points upon standing qualifies you for orthostatic hypotension. Plus not all autonomic patients are hot...I've met several who are cold all the time (from the low BP). I'd recommend seeing a neurologist or electrophysiologist (a type of cardiologist) right away to evaluate you and hopefully get you on some medications that can raise your BP. Salt and fluids can help to expand your blood volume, but there are many drugs on the market that can help even more. Plus, the symptoms you're experiencing can be a sign of many different disease processes, so getting everything looked at by a physician who understands the ANS would be very good. We've all been where you are now: confused, sick and scared, but we're all here to help answer your quesitons, and to let you know that you're not alone. -Lauren

Hopefully the thing they saw on your CT scan was just a fluke. You'll be in my thoughts! -Lauren

I was bedridden for the first 6 months of my illness. Since then, I've made a slooooooooow recovery and today I'm in school part time. I think the medications are mostly responsible for my improvement. However, I still have slumps where I'm very sick, sometimes bedridden, for weeks or days despite my meds. I don't think I did anything that you're not already doing. I keep my sodium up, eat properly, exercise when I can (even if I can only do a few leg lifts), I try to have days of rest in between active days, and I only schedule one "thing" per day. For instance, if I go to class, I don't do anything else that day. I also try to only be out for a few hours at a time. Have you thought about trying different medications to see if there are any that may improve your quality of life? I know midodrine and mestinon have been life-savers for me. -Lauren

I'll give you my understanding of the two, but you may want to do some research on your own to double-check: Mastocytosis, as Lucky Charm said, is more rare and more serious than Mast Cell Activation. It can often be associated with anaphylaxis, and severe cutaneous (skin) allergic reactions. In the case of Mastocytosis, there is no allegin causing the attacks, they occur at random and can be life-threatening in bad cases. A nurse I talked to at Vanderbilt said she'd met people with bad Mastocytosis who have anaphylactic reactions daily and have to have several epi-pens on hand in order to function...of course, when you're that sick the definition of "function" isn't much. Mastocytosis is also assoctiated with Mast Cell Leukemia in some cases, but there are many different kinds of Mastocytosis, some are less serious than others, but all are extrememly rare. Mast Cell Activation occurs when the body randomly flushes itself with Mast Cells. It presents as "flushing" episodes where BP and HR go up and the face and body flush for a short period of time. Shaking and sweating are also commonly seen druing these episodes. Vanderbilt did a study a few years ago and found that MCA is sometimes seen in conjunction with POTS for reasons they don't understand. Many people with POTS have flushing episodes, and while some with flushing don't have MCA, many test positive for it. It's treated with a type 2 antihistamine (such as Allegra). I get the flushing episodes that are associated with MCA. Although I get them so rarely they aren't much of an issue. I've been tested for MCA, and tested negative, however, I've never been tested during a flushing episode, which is the optimum time to be tested. I wouldn't be suprised if I had a mild case of MCA...but like I said, the episodes are so rare that I don't really worry about them.

Are you sure they thing Mastocytosis and not Mast Cell Activation? There's a huge difference between the two, even though they sound like the same thing. I only know a little about Mast Cell Activation because my doctors thought I had it for a long time, but my tests came back negative. If you want to know more about it, let me know. I hope in either case, you tests come back negative! Although MCA is fairly easily treated. -Lauren

Hi Calypso, I couldn't acess the article. However, I wouldn't trust any one source about anything with regards to lyme disease. There are so many conflicting studies... When HIV and AIDS first became a major problem, similar things happened within the medical comminity. For the first few decades no one had a clue what was really going on, but over time, people began to learn more and now we understand HIV and AIDS fairly well. I feel the same is true with Lyme disease, but we are still in that early, chaotic phase. Every year researchers are learning more about new strains of lyme and other pathogens that can mimic lyme. Hopefully within the next decade or two, doctors and lawmakers will have a clearer view of how lyme disease works, but I'm positive we're not there yet, or even close. My personal belief is that if a person has tested positive for Lyme, is treated, and still has symptoms; or tests postive for lyme many years after the fact, there isn't much harm in trying antibiotics. Syphilus can live in the body for years, and can survive treatment--it seems if one pathogen can do it, why not others?

Hi Emily, No, I'm not in NC yet. I had to change the date of the appointment to the 17th...so the week after next. But thanks for the good wishes The thirst hasn't come back...I just have my normal excessive thirst. I don't know what happened that night, but I'm glad it hasn't happened again.

Linda, I'm so sorry to hear this pain is continuing. Hopefully they'll be able to figure it out in November when you go to NY. In the meantime, can't they give you something to help with the pain when it gets that bad? It seems cruel that doctors would make you have such horrible experiences and do nothing to help! Hugs, Lauren

Sonotech, I'm so glad to hear that you're home, and hopefully feeling a bit better!!! Hugs, Lauren

Hi John, I'm pretty sure that under the family medical leave act, your time with Linda is protected by law. You may want to check this out. Like I said, I'm pretty certain you can't lose your job because you're taking care of your sick wife. Also, the suggestions of checking for nursing care and calling social workers is a good one. I wish the best for both you and Linda! -Lauren

I was very athletic before getting sick (I rode horses 5 days a week, and surfed almost every morning...this was when I was still living in Hawaii). I know how difficult it is to give up the activities you love so much because of this illness. Hopefully your POTS will resolve on its own, for most people diagnosed with POTS, they improve within a few months. I don't have problems with hoarseness...but maybe someone here will be able to help with that. Good to meet you! -Lauren

Hi Cornia, I'm glad you got the answers you needed from Mayo, and that your experience was productive and helpful overall! Hopefully this new information can help reformat a treatment plan that can give you a better quality of life -Lauren

Thanks guys! It has gone away a bit today, but last night was insane! I went through a 2 liter bottle of gatorade, plus a 500ml bottle of water in a period of 3 hours...that's nearly a gallon of fluids! I definitely peed the whole night...like every 20 minutes my bladder was full until about 2am. Around that time the thirst calmed down too and I was finally able to sleep. Whatever it was, it was brief, so I'm not worried anymore. Must have just been a fluke.

Thanks for the update! I've been worried about her and am glad to know she's in safe hands now. I hope she gets some answers! -Lauren

Hi All, I'm not sure what's been happening, but over the past 24 hours I've developed even worse exessive thirst than normal. Normally I drink 3-5 liters of water or gatorade a day, but today I've already gone through 6 liters...over the past few hours I've drank 2 liters and I can't get enough. As soon as I put down the bottle of gatorade I feel like I'm dying of thirst and have to pick it back up again. I've never had a thirsty spell like this before, but before I call my doctor and drive to go see her, I wanted to see if any of you have had similar thirsty episodes, and what you did about them, or how long they lasted. I'm getting enough sodium so I'm not worried about overdrinking...but at this rate I'm going to be up all night drinking and running to the bathroom Grrrr...new symptoms really get me boiling!

That's fantastic Persephone! I hope the exercise helps you feel even better! Just be careful not to overdo it, that's my only advice. (((Many hugs))) -Lauren

Hi Guys, As part of my preparation for the lyme specialist in October, I've started doing QID temperature readings. I've been plugging my measurements into a chart that shows my temp fluctuations throughout the day so my docs can see what my temp is doing. Sometimes my readings are low to normal, but other readings are much higher than what I'd consider "normal" temperature. For example, my readings yesterday were: 98.4 in the morning, 99.1 at noon, 98.8 in the evening, and 99.5 right before bed. I've read somewhere that the human core body temperature fluctuates throughout the day, but 99.5 seems a bit high to me. Would that be considered a low grade fever? Does anyone also have these kind of fluctuations? Thanks, Lauren

You're probably talking about the antiganglionic receptor antibodies which are found in less than 10% of POTS patients. Yes, if you do have the ganglionic antibodies, there are treatments available that woulnd't be available to "normal" POTS patients. But I'd caution you not to hope too much for the test to be positive. Autoimmune conditions, especially autoimmune autonomic neuropathy can be very difficult to treat effectivley in many patients. I'm not trying to bust anyone's bubble, and I'm not 100% certain that that's the test he ordered (although it is a test that's only done through the mayo clinic).

Mack's Mom, I was just curious what in the flu shot Dr. Lowe thought reacts with OI patients...I've done some research and found out that the vaccine basically just contains various strains of the killed virus. Do any of you know why OI patients tend to be more reactive to the shot? Is it just because we're more reactive in general? Or is it something specific?

Vanderbilt's Autonomic Research team did a study on drinking 8oz of water quickly and found that it raises BP. They actually recommend chugging water as part of the OI treatment protocol. Obviously, you don't want to be chugging water all the time, but if you need a little extra boost, I was told drinking 8-16 oz of water quickly 10-20 minutes before activity can raise BP. Florinef is a good option to raise blood volume. If that doesn't help, you may want to reserach Procrit. It's been a miracle drug for some people on this board.

Last year I was scared to take the flu shot because of reading on this site all the different reactions those with POTS have had to it. However, I spent my whole winter terrified to leave my house because of the flu, and every time someone coughed near me I'd have a mini-panic attack. This year I'm going to talk to my doctor about the risks for people with autonomic dysfuction and let her decide if it's worth it or not. I just don't really want another winter where I wall myself up in the house because I'm scared I'll get the flu. ...but I also don't want to have a reaction to it that leaves me in bed all winter...I already had my whole summer eaten up by a major setback.

Robert, Welcome Have you thought about getting daily IV infusions via port? I normally don't suggest/ask about that, but it sounds like you've tried and exhausted many of your hydration options. There are a few members of this forum who get daily IV's and it's really helped them. I stay pretty hydrated by drinking about 4-5 liters of gatorade a day (sometimes more) and eating TONS of salt on everything (I even salt my potato chips ). I hope you get some answers! POTS isn't a diagnosis anyone wants, but there are medications that POTS patients take that many with a CFS diagnosis may not have access to. (Mestinon, midodrine and beta-blockers are three that come to mind.) -Lauren

The only doctors I can recommend are in Maryland, and are probably too far away to help. I really hope Linda Joy gets some help! She'll be in my thoughts and prayers.

I usually just tell people that I have a heart condition. While this isn't the real truth (my heart's just fine), it's the fastest, most painless way to explain what's going on. I've learned that most people don't really care to hear exactly what's wrong with me, even some of my friends don't really want to know. I think this is because illness makes healthy people uncomfortable in our society. When a healthy person is around a sick person, it reminds them that they too will get sick and die one day...which is a very unpleasant thought for most. When people do express an intrest in the mechanics of what I have (which, to be honest, is very rare), I tell them that something (most likely lyme disease) damaged the nerves that control my blood vessel constricton, and I have a hard time with blood pooling in my legs when I stand up. If they want to know more beyond that, I refer them to the DINET site. I hope that helps! -Lauren

I'm not sure how NMH could cause tingling in the feet. What you're describing sounds alot like Raynaud's Phenomenon, which is common and not much more than an annoyance. However, you definitely need to get it checked out by a physician. Many people with POTS have similar problems with neuropathy in their feet and hands. In most cases I've know about (including my own) the peripherial neuropathy doesn't progress, so hopefully if you do have neuropathy, it's not anything serious. I know how scary it is to have new symptoms and not know what's wrong, but hang in there and try not to panic. I know if I allow my fear to take over, my symptoms always get worse. Have you been diagnosed with NMH? If so, have they figured out the source? (ie. primary or secondary NMH) Please let us know how it goes! -Lauren