Dizzy Dame

I take it along with Alpha Lipoic Acid and B vitamins. It's hard to know which helps the most, because I take all three suppliments, but I can say that since starting them, my energy levels have increased. It's not a cure, but every little bit helps.

Purple hands and feet when cold is called Raynauds Phenomenon. In my experience, it's fairly common in those with POTS and/or NCS. Probably because we already have damage to the nerves that control the blood vessels in our legs (causing blood pooling): http://www.niams.nih.gov/hi/topics/raynaud/ar125fs.htm

I've heard of a link between lyme disease and pituitary problems, but not necessarily POTS. However, POTS can be caused by lyme disease, so maybe there is a link in there somewhere. Have you gone to PubMed to do a search on pituitary gland problems and tachycardia? Here's a link if you're interested: http://www.pubmedcentral.nih.gov/

I'm glad you're home and resting. Sorry to hear the new drug didn't help, but hopefully they'll be able to find something that will.

Just thought I'd add a "here, here" to the thread. Especially about using punctuation and breaking the post up into paragraphs. Sometimes I want to read a person's post, but just can't understand it when there's no punctuation. My foggy brain can only handle so much

Linda, you're such a sweetheart. Of course you have a right to be upset after the eval. No one will think you're being ungrateful! I'm sending you big bear hugs and I hope they can arrange something to keep you out of a nursing home. ((((HUGS))))) Lauren

I do want to second Tea Rose and say that illness does not mean that one can't have a productive life. It just means that one may need to reformulate things a bit. There are many things that we can do from home to feel like we're making a contribution. Start a website or blog. Pick up drawing or painting. Write a book. Frida Callo was and still is a world famous artist and she was bedridden for much of her life because of a spinal injury. Emily Dickinson spent the majority of her life shut in her house and she became one of America's most influential poets. Christy Brown had cerebral palsy and couldn't move anything but his left foot and he still became a famous artist. Christopher Reeve was paralyzed from the neck down and he still made huge contributions to stem-cell research awareness before he passed away. My point is that a person is only as limited as they allow themselves to be. We may not be physically able to be supermom, or run a triathalon, but that doesn't mean that we can't be successful, happy people.

Mestinon has been a great help to me. I haven't had the stomach issues that many have, but I always take the medication with a bit of food, since I think it can cause lots of stomach cramps if you don't. I'd say it's worth trying. It's been very helpful to many on this forum.

I can go to school part-time because the University's made so many accomidations for me. However, I won't be able to work when I graduate unless I improve considerably.

Oh, Jan. I'm so sorry to hear about this. You'll continue to be in my prayers during this difficult time.

I think your neurologist is wrong. POTS is a dysautonomia in most cases, meaning it's caused by a dysfunction in the autonomic nervous system. I know of some cases where POTS can be caused by vasuclar damage, but even then, the symptoms have to do with the autonomic nervous system's compensation.

I think if you go to the ER they're probably not going to be able to help you. ER doc's are good with stab-wounds or car-accident victims, but not with new, chronic illness type symptoms. You'd probably feel like you wasted a lot of time and money if you went. Can you call your doctor? That seems like the best thing to do. However, if the weakness gets to the point where you're having trouble breathing etc. you should definitley seek emergency care. I hope you figure out what's happening -Lauren

Standing, before meds, my HR is between 110-140 depending on how hydrated I am. With meds, my standing rate is between 90-110, but I still get dizzy...go figure!

Morgan it's so good to see you! I've been worried about you over the past few months, so many of the old-timers are having bad stretches lately. I'm glad they finally got your pacer working right, but I'm so sorry to hear that your GI issues are still horrible. I really hope things begin to improve in that arena. Anyways, it's so good to get an update from you, and to know you're okay. As always, you'll be in my thoughts. Hugs, Lauren

Good luck Sophia! We're all thinking of you

From what I know about GI problems, if your intestinal problems have to do with a lack of symbiotic bacteria to help digest food, then pro-biotics will help. However, if your problems have to do with autonomic neuropathy to you GI tract, then no amount of extra bacteria will help that problem. As you may already know, probiotics only contain the bacteria that are found in your GI tract, they aren't really a medicine in any way, but are good for people who are on antibiotics, or have some other disease that hurt the number of their bacteria.

I was bedridden for the first 6 months of my illness, but now I'm much more active. So keep hope that you'll improve with time. In the meantime, have you tried different medications that could help you? Have you been to see an autonimic specialist who may be able to give you a good diagnosis? Many of us have been where you've been before, so you know you're in good company here. I hope things start improving for you soon

Hey Em, I know what you're saying with breakthrough bleeding. I've been supressing my periods for 6 months now and occasionally will bleed very heavily for a day or so. It's very annoying...to say the least. I tried the depo shot before I began taking pills. However, I bled for 6 months straight when I was on it, and since the shot lasts for 6 months, there wasn't really anything anyone could do about it. However, my case was pretty rare from what I've heard...most people I know who've tried depo didn't have that problem.

I'm not sure what the thick means, but it sounds like something you should definitely mention to your doctor asap. Let us know how it turns out. -Lauren

Keep in mind that chiropractors do not go to medical school to get their lisences, and that "holistic" medicine is not regulated by the FDA and is usually not peer-reviewed. Also, in my experience, holistic "doctors" often come to the table with an agenda against pharmaceutical companies, and try to convince most people that the medicine they're taking is actually making them sick. If you had POTS before taking the meds you're on, then it makes sense that those meds couldn't have caused your POTS. In my opinion, I'd be very, very cautious when stepping out of mainstream medicine. There are many people out there who tout themselves as "healers" but are really hucksters. Also, you really should be communicating with your PCP about all of this. He/she can help you to make informed decisions about any new treatments you're trying.

I'm the same way when it comes to feeling normal when I wake up. I also feel normal whenever I'm laying down in general. Even though I've been sick for more than a year now, I still forget sometimes that I am sick if I've been laying down for a long time. I get up like a "normal" person, and then BAM, tachycardia, nausea, etc. I also know the cause for my POTS. I have lyme disease. Hopefully you can find the cause for yours!

Friday, My doctor is treating my symptoms. Right now we're waiting to see how I do on antibiotics, then we're going to do some tests to see if I would benefit from a new treatment for POTS. He's definitley concerned with improving my life, but also really looking into the mechanisms of my POTS, as each person is different. Ithomas, I'm not sure if he's published. I'll learn more about the cortisol levels on my next visit and can ask him. There was so much going on today that we only briefly talked about his research. Sunfish, I'm sure it's the same doctor. How was your experience with the tests? Did you get any help from having them?

I had an appointment with a new neurologist in Columbia MD who really knows what he's doing when it comes to POTS. We went over my (now antiquated) Vanderbilt results, and also talked about my recent lyme diagnosis. He's doing some pretty interesting research right now with cortisol levels, and has been working with Vanderbilt on other autonomic research. It was so refreshing to talk with a doctor who knows about POTS, who doesn't second-guess my diganosis or symptoms. He was also just very nice, and open-minded about the lyme diagnosis. He says that there's no literature linking POTS to lyme disease, so he's very curious to see how I do on antibiotics, because I'll be one of the first he's seen with both diagnoses. He's also willing to communicate with my lyme doctor so they can both make desicions about my treatment plan, as it's quickly getting complicated with all the new medications. Anyway, I just wanted to write about my positive experience. There are good doctors out there, even if they're uncommon. I don't feel comfortable listing his name here on the forum, but if you're from DC or Baltimore and are looking for a good POTS doc, PM me and I can give you his information.

Ling, it's so good to hear that you're allright. All of us have been so worried about you! I'm glad you and your daughter are happy and healthy (for the most part). Thanks again for giving us an update! -Lauren

Congratulations!! I'm so proud of you! All your hard work, blood, sweat and tears are finally paying off! Hugs, Lauren