Gena

After reading everyone's posts about hot and cold weather, I guess the million dollar question is "What city has the perfect climate for us POTsies?" If we find that out, then we can all move there!

Blackwolf, When I first started having full blown POTs symptoms in June of this year, I felt exactly like you. I couldn't sleep, i couldn't even roll over in bed without sending my heart into a tail spin! I was tired and wired at the same time. I was afraid if I took a sleeping pill that I wouldn't wake up. I dreaded nightfall because I knew I'd be a wreck the next day. But alas I finally got up the nerve to take some Valerian and it really did help me get a few good nights of sleep. Being able to sleep made me feel much better the next day, although far from 100%. At least I was able to function better. During the first 2 months, my symptoms remained pretty bad and I had to have my husband push me in a wheel chair to the bathroom in the middle of the night. It was absolutely awful. I tried a calcium channel blocker for the tachycardia but couldn't stay on it b/c my BP got too low. Anway, I started pumping fluids, salt, gatorade, meditating and taking a lot of licorice root and ashwagandha (indian herb). Miraculously my symptoms got better. I don't know that I can attribute it to any one specific thing. I still deal with POTS symptoms, but nothing at all like they were just a few months ago. I guess I just want you to know that there a light at the the end of the tunnel even in our darkest moments. I will keep you in my prayers for a speedy recovery.

I don't know if Nicole has low blood pressure, but In order to combat my low blood pressure/low volume, I took licorice root (3,000-5,00mg) day and Ashwagandha (an ayurvedic herb for stress/energy/lowblood pressure) for about 6 weeks. I then tapered off the licorice root and now only take the Ashwagandha. And of course I still do plenty of fluids and Celtic sea salt. As with all herbs, you have to be patient as they aren't as fast acting as presc. medicines. And as you know everyone responds differently to meds, herbs, etc. I have a prescription of florinef but have not started taking it. I'm trying to go med free as long as possible! I will certainly keep Nicole in my prayers and hope that she finds relief soon. She may also want to try the compression hose if she hasn't already. Best wishes.

Hi Emily, I don't have any gall bladder problems, (knock on wood) however I have had to drink the yucky stuff before a CT scan of my chest and abdomen. I had to make sure it was gluten free before I drank it. (it was) It didn't taste that great (but they do add flavor to it, so at least it's tolerable). I really don't recall what's in it, but I think they read the ingredients to me and called the manufacturer. I had the CT scan before I had POTS, but I've always been sensitive to chemicals, food dyes, etc. And I didn't have any problems or reactions to it. But like I said, that was before I had full-blown POTs. You may want to press the nurse/doctor further for info on what's in it. Just tell them you have a lot of allergies/sensitivies to things, and maybe they will help you out. Good luck with everything, and keep us posted.

Sorry to hear you're feeling so weak. You may want to review the list of what helps by clicking on this link.. potsplace.org In particular, you may want to check out what it says about Florinef, licorice root, saline, butcher's broom and compression hose. I had success with licorice root, salt and fluids. I haven't tried anything else yet. Hope you find something that works for you soon.

Hi Jessica, Glad to hear you found a doc who is at least willing to listen and to spend some time with you. It really makes a difference. I went to Mayo Clinic last week and also had a good experience there with a new cardio they just hired, Dr. Kasamoto, I think was his name. (Can't remember how to spell it.) He was extremely familiar with POTS and was so understanding of all of our symptoms and offered some good tips as well. Anyway, keep us posted on how you do tapering off of your meds. Best wishes with everything!

Ramakentesh, I'm just curious as to where you went on holiday? Was it a different climate or altitude from where you normally live? Perhaps that helped ease your symptoms as well? Or maybe you ate different foods than you normally do? I know that my symptoms are easily triggered by foods my body doesn't like. I also found that computers aggrevate my symptoms, but I have to work on one most of the day at my job. I wish I could get away from it though! I do love being outdoors and getting fresh air. As long as it's not too hot or humid outside I usually feel better outside. It's definitely a mystery what causes our symptoms to wax and wane. I think the triggers are different for each of us, so there's not a magic bullet solution. I'm glad you were able to get away from your symptoms for a while though...perhaps you should go on holiday more often!

Geneva, I agree that mine intesifies when my neck muscles are tight. I do go to a massage therapist about 2x/month, but I wish I could go more, but my insurance won't pay for any more than that. And yes, lying down is the best remedy, but kind of difficult to do when I'm at work I guess it's comforting to know that these pains are common in many of us. I won't worry about the pains in my head and neck anymore, since my MRI was normal and others seem to have similar pains. Thanks!

Hi Nina and Michelle, I recently had an MRI of the neck and head and they were normal. I mentioned the headaches to the neuro at Mayo Clinic last week and he didn't offer any ideas. How do they know if you have too much spinal fluid causing the pain...would they see that on an MRI or is there another test for that? I do notice that they get worse when the muscles in my neck are stressed - like today I was under so much stress at work and found out my grandmother was in the hospital. My head also hurts where it meets the back of my head and then also higher up around the little bony areas that stand out on the skull (I have one on each side so it's a normal formation ). If I sneeze or cough when I'm lying down it really hurts. Other days, the pain is much less but it's still there. Sometimes I think maybe it's a compressed nerve in my neck or something. Thanks for your responses!!

Thanks so much for all of your responses. Since I work at a hospice agency, we normally are offered the flu vaccine for free every year. They haven't mentioned anything about the shortage, so I assume it will be available to me. I guess I will try getting one, although I will talk to my doctor first. I'm an avid hand washer and try to avoid sick people, but now that my 15-year old step son has moved in with me and my husband, I'm sure he'll be exposed to all of the flu germs at high school so I want to make sure we're all protected as much as possilbe. Hopefully my body won't flip out and have a bad reaction!

It's getting that time of year where everyone will be getting colds and the flu. I was wondering if any of you with POTS or other dysautonomia have ever had any problems/adverse reactions with the vaccine. I know in general that a small percentage of the general population have an adverse reaction or get a little sick after the vaccine, but what about POTS people? I have celiac , which is an autoimmune disease, so my immune system responds weirdly to things sometimes. I don't recall ever getting a flu vaccine in my lifetime. I was wondering wheteher to get one this year or not. I know it doesn't protect against all strains, but I'd hate to get the flu, because I know that my POTS symptoms would probably go nutso on me! Any thoughts?

BlackWolfl What is blood vessel inflammation exactly and what types of symptoms does it cause? I have a horrible pain in my neck that shoots up the back of my head on the right. I can't figure out if it's vascular, or pinched nerves or what.

I've had mild hyperpigmentation on my face and forearms since college, but was only recently dx'd with POTS. I know a lot of women with hyperpigmentation who are perfectly healthy otherwise. I just thank God for make up and skin lightening creams!

Hi Katejude, Welcome! Well the good new is, there seem to be several stories posted in this discussion group that talk about significant improvements over time. Sometimes there are relapses and sometimes not. I'm in the beginning stages and hoping for improvement as well. There's definitely hope. This board is great for support, but I don't let myself dwell on everyone's individual symptoms, or what they can and can't do. If I do get too caught up in it, I find myself thinking, oh I better not do this or that as it might aggrevate my symptoms, or I start thinking about a new symptom that I read about and it seems to magically manifest itself in my condition! In other words I don't want to create limitations that weren't there before I read about them! The suggestions of support hose, low dose beta blockers and SSRIs are all good ones to discuss with your doc. Keep us posted and best wishes!

Hi Leah, I had vitamin K deficency, anemia/low iron levels for many years. My hematologist could never figure out why. Thought maybe due to heavy periods at that time. He never tested for celiac or chron's, etc. I took iron supplements for years and as soon as I tried to go off of them, the anemia would return. A few years later I became so ill with digestive problems that my gastro doc did a blood test for celiac. It was positive. I was soooo mad at my hematologist for never checking for digestive causes. As my celiac had gotten so bad that my intestinal lining was completely wiped out. (I am now healthy in that respect due to being on a strict gluten free diet). Regardless of your endoscopy results (we all know tests can be performed and interpreted differently by different doctors.), I would adhere to a strict gluten free diet and have your blood tested again for gliadin antibodies in about 3-6 months as well as your iron. If both tests are normal then, you know to stay gluten free. I would also find out the cause of the blood in your urine, as that may be contributing to your low iron levels. I know many people have blood in their urine due to interstitial cystitis of the bladder. It's definitely a good idea to see a urologist about the reason for the blood though. Hope this helps.

I went to some of the links posted under Sue's question about chiari and discovered that the main symptom is the intense headaches in the back of the head that are agrrevated by coughing,sneezing, straining, etc. I have not been dxd with chiari, but since I've had POTS (only about 2 1/2 months) I've had bad headaches in the back of my head that seem to be characteristic of chiari malformation. LIke the Chiari type of headache, when I cough, sneeze, etc it makes the headache much worse. It feels like a tightening in my scalp or intense pressure. The headaches are sometimes extremely severe and can ruin my whole day. The only thing that seems to help them is to lie down for a few hours. Sue or anyone esle with CM--Do you get these types of headaches? And how were you dx'd with chiari-- via MRI results? Does anyone else with POTS have headaches like these and NOT have chiari? I've had an MRI of the neck a couple of weeks ago, and I have appt. to get an MRI of my head next week. The MRI of the neck was normal according to the Dr. who read it. Perhaps I should have someone double check the MRI?? Thanks for your help!

Just some common sense guidance about herbs... I agree with many of the above posters who mentioned to be careful with herbal remedies. I am very sensitive not only to meds, but also to some herbs. If your naturopath recommends any herbs, I would start out on a dosage that is less than recommended and gradually build up to see if you tolerate it (just like we do with rx meds). Also, mixtures with multiple herbs in them make it difficult to determine which one may be causing an adverse reaction, if you do indeed have one. If she tries to push a bunch of herbs and/or supplements on you at once, I would ask "which of these do you MOST recommend to help improve my condition?" and then start out with one or two of these natural therapies at first, instead of trying so many new things at once. You can always add the others in slowly to your regimen over time. Good luck and keep us posted

Hi Jessica, I am studying holistic nutrition and naturopathy, so I certainly believe in what this field can offer. However, just like the medical profession has good doctors and bad doctors, so too does the alternative medicine field. It's good that you're on quack alert, but I hope you have a good experience and that she can truly help you. You should definitely find out her credentials, where she studied, how long she's been practicing, etc. I'd be interested if she does any kind of non-invasive tests on you. Some naturopaths do things like saliva hormone testing, biological terrain testing (ph of urine and saliva) or things like kinesiology or iridology (in my opinion, the latter two have some scientific questionability, but they're kind of interesting in there own way). She may also suggest a cleansing diet of some sort to get rid of toxins and irritants in your system. And of course she may recommend certain herbs or vitamins I have always gotten more out of alternative methods of healing and treatment than conventional medicine. It's good that she works in an office that offers other complimentary therapies. I think that's great. Let us know how it goes and good luck!

My heart rate is all over the place. I have a heart rate that gets down to the high forties or even thirties when I'm sleeping and then of course it can also stay in the eighties all day. Today during the middle of the day it was 47. My cardiologist hasn't expressed concern. However, I am very petitite and fairly conditioned from exercising over the years, so my heart rate has always been on the low side. Personally I wouldn't get a pace maker unless it was absolutely necessary!

Thanks Justin. I'll try those tips next time and let you know if they work!!

Veryblue, Yes it's true I was dx'd with fibromyalgia in my early twenties, but it wasn't debilitating and it didn't hold me back from anything in life. I never took any meds besides a motrin for my fibro. I considered myself extremely healthy, but then 3.5 years ago I got really ill and lost tons of weight, had weird muscle twitching, stomach pains, etc. I was then dx'd with celiac disease (gluten intolerance). I went on a gluten free diet and my health basically returned to normal for many years. Then in June of this year I woke up in the middle of the night with my heart racing out of my chest, I had intense chest pain, diarrhea, nausea, dizziness, etc. I've never had this happen before in my life so it was really scary. These episodes started happening frequently, so I went to a specialist. It was only a few weeks ago that I was told I have MVP and POTS. I was like you, very upset, frustrated and angry at my body for failing me and at the medical world for their lack of knowledge and concern. It took several months before doctors could figure out that I had celiac. They put me through a million and one tests and just scratched their heads. I hated them all! Just remember that you are not a "freak". If your family doesn't understand this or have compassion, then try printing out some of the information at potsplace.com and give it to them to read. You didn't do anything wrong to acquire this illness/symptoms. We don't fully understand what triggers these things. In my case I think it was stress each time that triggered the fibro, celiac and POTS. Please don't blame yourself. Living with POTS definitely takes some lifestyle adjustments, but I am thankful to be alive and to know that I have a great support group on this forum!! Hope it helps to know we're here for you! Sorry for rambling.

I often feel the same way when getting out of be and my BP is usually too low when that happens, my heart will also flutter and race when I try to get up. I agree with the others advice about keeping water at your bed, etc. I don't have a family history, virus or any of the other so called triggers for POTs either. I just came down with my symptoms 2-3 mos. ago. I went to the Mitral Valve Prolapse and Center for Autonomic Disorders in Birmingham. I saw Dr. Sawyer. She did a tilt table test, which didn't show POTs because my blood pressure was actually normal that day, which was a fluke for me, however she did wind up diagnosing me with POTS, dysautonmia and also found mitral valve prolapse in my heart. It was just a relief getting a diagnosis and this support forum has been a huge comfort as well.

I have fibromyalgia too and occasionally get weird sensations in my hands and feet but not as bad as you're describing. Have you had this problem with your hands and feet in the past? Or is this something new for you? I assume you've had nerve and muscle tests to make sure everything is okay...if not, I would definitely see your doctor or a neurologist and get the proper tests to rule anything else out. Sometimes fibromyalgia symptoms can mimic or overlap with other conditions, or maybe this is just part of the POTS symptoms too?. Please know that we're here for you and I hope you feel better soon!

Thanks everyone for your input. It really helps. What would we do without the internet and this forum??? My husband may be getting a job as a pharmaceutical rep for Merck in the near future! One of the drugs he'd be marketing is Singulair. It sounds like many of you like this one, so I might try this one first. I hate taking any meds at all, but I'm tired of blowing my nose 24/7!!

I was just doing some research/surfing around on the web when I cam across this website http://www.madisondoctrine.com/press.html The articles are fairly technical/scientific, but really insightful. Ralph Ankenman M.D. talks about hypotension and hypertension symptoms and the best treatments. This article also talks about adrenals, excess Norepinephrine and Epinephrine . there's another article on the website that discusses the adrenal glands. Apparently this doctor is in London, Ohio?? Not sure if he's affiliated with Dr. Grubb at all, but he seems to know a lot about POTS type symptoms! Just thought I'd share.