kayjay

+1 I know this was a big decision for you. I hope it works for you.

I took Valcyte, which acts similarly to Rituximab. It destroys the B lymphocytes. It's antiviral for people with AIDS. I am a lucky cfids patient because I only have viruses (EBV, parvo and HHV-6). My understanding is that it is much easier to get cfids patients with only viruses into remission than cfids patients with bacterial infections.As to all the naysayers, there have been placebo controlled studies that are published in medical journals about earthing. In the studies, they plug the controls into fake earthing sheets, and the placebo group reports significantly less improvement than those earthing (15% v. 85%) . In one such study, cortisol as measured by saliva tests normalized in in 10 out of 12 participants using an earthing sheet, with all 12 reporting easier and deeper sleep. Have you ever heard of Ignaz Semmelweis? I didn't think so. He discovered the germ theory of disease in 1847 and proposed that people wash their hands. He was laughed out of medicine and died in shame in an asylum after losing his right to practice medicine at his hospital. Twenty years later, Louis Pasteur is credited with the discovery, and even he met resistance. So I wouldn't jump to any conclusions about anything. We all know less than we think about health, life and this earth. Most PhDs in physics will say that the benefit of the degree is in learning that we don't know anything, which leaves many paths open for research. Absolutely- modern medicine clearly doesn't have all of the answers. My point was that I "earth" naturally and still have dysautonomia. Again, I've never lived in an urban area. I wear shoes if I'm going to be around hoofed animals or if it is cold. It was hard not to notice that this is your first (and only) post as far as I could see and you shared the website to buy a sheet. I am skeptical. I certainly would spend 10 times that amount for 2 weeks of feeling great. I'm just not buying it. By the way- I'm still barefoot Best wishes to you.

Feeling like crap does send us indoors! I developed a vitamin D deficiency post POTS. I was shocked- too much time indoors

Approximately 30% of the population is susceptible to the placebo effect.

I have always lived in the country- except when I was spending summers at the beach. I'm barefoot ATM- I hate to wear shoes. This is gross but in college I actually got kicked out the dining hall for being barefoot. Most of my shoes are leather bottomed- not my barn boots. I only wear them to protect my feet from getting stomped on. Thankfully I've never lived in a neighborhood or a city so I don't spend much time on paved surfaces. My house has no carpeting- it's all wood. I'm guessing most of is would stand on our head naked, eating dirt, singing "Mary Had A Little Lamb" if it would make us feel better. Not the first time I've heard of this. It reminded me of the magnet craze of my childhood. I'm all for fresh air, fresh food, and sunshine but I'm not buying into the "earthing cure". When I was well enough to teach I wore shoes every day and ran around on carpet. I was no worse for the wear. Being in the northeast I spend more time indoors during the winter and I almost always wear shoes. Around the house I'm partial to wool socks and a pair of sheepskin moccasins. I'm no sicker in the cooler weather. I just wanted to share my experience. I haven't actually tried sleeping on the ground but I'm game. I'm so glad you are feeling better. Hopefully it will last more than 2 weeks.

You can't get a hyper pots diagnosis properly during a tilt table according to my doctors. I'm also not sure how the nitroglycerin comes into play. I was never given anything. I'm hyper and my heart rate increase by nearly 100 bpm per min. I also have episodic high blood pressure (and lows) 148/114 is unpleasant but not very high for a tilt table. He's very lucky to have your support.

I want to know about this as well. I'm currently on nadolol. My heart rate has been running quite low.

A Beta reduced my chest pain as well. It took me months to adjust to the side effects. Initially my Bp and heartrate were too low and I had an increase in my fatigue. There are others though if that one doesn't agree with you. I'm on nadolol. I've been on large dose but now I cut pills and take a small amount.

It's actually my moms dog . She is 7. Just to clarify when I say "swimming" I don't mean laps I take group "water exercise" classes at the Y. It's less cardio than laps and I get to use my entire body. The cold water is hard to get used to but actually better for me once I get moving. I have water shoes (the pool floor can be hard on your feet) and ankle weights. I keep my water bottle along the edge of the pool also and drink during class. It's intimidating to start but many places let you try a few days for free. I've embarrass myself with everything from passing out to forgetting my locker combination Lots of people in water classes are there with health problems. I've met people with MS, bad backs and knees, and fibromyalgia.

Also I second Sarah's suggestion for swimming. It is the best thing that I've tried. I also did Pilates and yoga but it was harder for me to be in a group of healthy people. I have to tell myself that I don't have to stay the whole time. It's pretty easy to slip out of a swim class because its not so quiet. I felt disruptive when I left Pilates or yoga early. I still recommend them- but I'm better with the pool. When I use a recumbent bike it's too easy for me to "over do" it. I'm a bit of a goal setter

I have chronic fatigue syndrome also. I actually find that to be my biggest hurtle. There are days when I force myself to go to swim class and come home and am in bed most of the day. I hate it... But I'm learning not to criticize myself for going back to bed. I used to feel like a failure for being exhausted all of the time. If you are having gi issues, please consider getting your vitamin levels checked. I've been deficient in iron and d in the past. I am gluten free and take suppliments. Is still have dysautonomia etc. but I really don't believe I ever had IBS although I was diagnosed with it. Gluten free and trying to deal with the dysautonomia issues has helped my gi system.

For me pots is most likely a lifelong condition. I've had it for 15 years for certain. I believe I had symptoms of it even earlier.I mentioned that because my advice is not for a "cure". Some people really seem to do better with exercise. I'm not one of those people. I exercise because I believe it is good for my entire body. I know that being weak and unfit will not make me feel better. My advice for what it's worth 1) commit to exercise. (I intend to exercise for the rest of my life in some form or another). 2) try something new. ( I now swim year round. My tennis days are over but I can take swim classes at the y) 3) don't over do it. (One swim class is better for me than staying for 2 in a row). 4) don't be afraid to fail. (I've been visibly sick in public more times than I want to remember. Everyone else forgets thankfully). 5) don't be hard on yourself. (I need to cut myself some slack when I just can't do it) 6) listen to your body but remember it tells big fat lies (pots makes me feel like I'm going to have a heart attack. I haven't yet) 7) don't be "all or nothing" (when I'm too sick to do anything it's hard to go back to it) I ignore every symptom that I possibly can. I realize that it's doubtful that I will ever run a marathon but I can swim, use a bike, and do some Pilates. I think exercise is supposed to increase blood volume and strong muscles are a natural compression. Two more thoughts...are you getting enough protein? Are you having gi issues and not absorbing nutrition? I eat food a absolutely hate... Just for the nutrition. I also think I lost a lot of leg strength in a short amount of time from avoiding walking up stairs. Good luck! I hope your return visit is beneficial.

I avoid Starbucks because of gluten. It's really hard to find out what's actually in any of their drinks. They use soy milk with gluten in it and I couldn't get a clear answer about their flavorings. I drink regular coffee at home when I feel I can tolerate it. Some people are really sensitive to caffeine. I'd be surprised if it would make you sick the next day. Starbucks makes me sick but it's not the caffeine. If I have too much caffeine I feel it about 1/2 hour after drinking it. Hope you're feeling a better now!

Dizziness is a side effect FYI. Klonopin would be a drug you might want to "google" the side effects of before taking. I personally wouldn't recommend it. I'd compare it to drinking wine mentally. I would "feel" better if I was drinking wine thoughout the day but I wouldn't "be" better if that makes sense.

I've been on Ativan and klonopin. Initially I thought that they were the best drugs ever. They both helped me sleep when I first started. My neurologist told me that klonopin could make pots symtoms worse.I took myself off of it after 2 or 3 years. Very subtly they interfered with my memory also. I am much better off without it. I didn't suffer with significant withdrawl symptoms. At times I wish I had a script for adrenalin panic. These drugs don't block adrenalin like a beta blocker.

I have children so I get up no matter what and try not to think about it. I did a break my nose a few years ago going to the bathroom. So I am a bit afraid of doing that again. Keeping a "regular" sleep schedual is important to me. I leave water by my bed as well as a can of v8. I do not sleep soundly though the night so when I wake I drink. I used to not be able to drive my kids to the end of the driveway. Now I usually drive them to school. I get up several hours before I have to go any where. If I have to leave the house at 7:30 I'm out of bed by 5:00. I do not shower. It takes a lot of planning ahead. Sleeping late doesn't make me feel better anyway. Even on weekends I'm up by 7. I also do not stay up late. Usually I'm in bed between 8 and 10.

They can be hard on the stomach. I just cut my excessive water intake by replacing 50% with v8 or drinks with salt. I also salt my food now. Sorry, I know I didn't really answer your question but I was able to increase my salt without tablets.

http://www.sciencedaily.com/releases/2008/05/080515171020.htm http://jama.jamanetwork.com/article.aspx?articleid=1152665

http://www.ncbi.nlm.nih.gov/pubmed/21731062

Electrolyte imbalance can potentially be dangerous. It's pretty easy to get your levels checked. This study was of 9 people with Orthostatic Hypotension. I have POTS and Orthostatic Intolerance. I try not to drink more than 50% plain water as per Mayo Rochester instructions. As for what is best for you I would check with your doctor. I'm not personally looking for a temporary blood pressure spike. My goal with fluid and salt intake is to stay properly hydrated.

Ablation was offered to me. My mom was actually opposed. I have had sugery for endometriosis. It was bad enough that my doctor wanted to show me pictures. Yuk! I currently take kariva continually as per mayo clinic. It helps a lot. I do have " break though bleeding" but my period no longer has much of an effect on my pots.

I hope you get some answers soon. Maybe it will comfort you to know that 150/ 99 isn't very high to many of us. I personally find that the fluctuation is rougher than the actual high / low. I'm all over the place with bp. I feel crappy when it's low, crappy when it's high, often crappy when it's normal It can be very scary but I have been assured that fluctuations in Bp are not harmful- meaning that you body is made to deal with rising and falling bps. I've gone into the ER when my Bp was 200+/150 +. Now I'm able to wait it out (also on bb's so my highs aren't so high). I felt much better knowing that athletes such as power lifters have high spikes upon exertion. Maybe you will will feel better about it too. It's upsettingto feel unwell and have readings that seem abnormal.

Hanice- why do you suspect hyper? My hr lowest at rest -generally no matter what time of day. Unless I'm having seemly random "rushes" of tachycardia. My hr increases when I'm upright.

Ha! My point was that Bp fluctuates in a 24 hr period. Most people are going to feel better when fully hydrated. Many doctors suggest that patients drink before rising. We had to practice IQ tests in grad school, I'm pretty sure my sure my score post pots would be lower

Lol! Do you want our Wechsler scores? ;D Generally Bp is lower when you are sleeping. As far as I know this is true for both kinds of pots patients as well as the general population. I have hyper pots and have spiked at night. Presumably high blood pressure would be unlikely in a person without excess adrenalin. You are also less hydrated when you wake up. To the OP- I never have a "normal" Bp reading. Of course I'm just one person, but my Bp and hr is always very different sitting vs. standing regardless of the time of day. Generally speaking I feel somewhat better in the afternoon.