Chaos

I came across some notes last night that I made after watching one of Dr. Raj's videos in the past. He was wondering if perhaps the kidneys in POTS patients aren't able to hold onto sodium for some reason. Don't have time to write more right now but will try to remember to get back to you on this. But if I forget, please PM me to remind me.

See if it works as a link this time.. If not, guess you'll have to copy and paste it to find the Workwell site. www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=3&ved=0CDkQjBAwAg&url=http%3A%2F%2Fwww.workwellfoundation.org%2Fresearch-and-latest-news%2F&ei=mr1OU78ypJTxAaWegPAN&usg=AFQjCNEZ4jlsKPiqrai6QsozEKVp2ygoww&bvm=bv.64764171,d.b2U

As everyone has said, it may very well be the POTS causing these symptoms and time may help with a very slow gradual return of activity. However, if you suspect that something else may be going on, you might want to look at these resources regarding ME/CFS and the diagnostic criteria for it. Post-exertional Malaise (PEM) is a hallmark sign of ME/CFS. Many people who have ME/CFS have described an event such as you are describing which they feel caused them to "never" recover. http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract The above link is the abstract. You can get the full article from that site. Here is a guide for primary care practitioners to help them diagnose the disease. http://sacfs.asn.au/download/me_international_consensus_primer_for_medical_practitioners.pdf Here is a link to Workwell Foundation (formerly Pacific Fatigue Labs) which has done much of the research on exercise and PEM in ME/CFS. If you scroll down to the bottom of the link, there is a list of articles and video links that you might find helpful. There is one video called "Top 10 Things You Need to Know About Post Exertion Relapse" which I found very informative, although all the articles and videos were interesting. www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=3&ved=0CDkQjBAwAg&url=http%3A%2F%2Fwww.workwellfoundation.org%2Fresearch-and-latest-news%2F&ei=mr1OU78ypJTxAaWegPAN&usg=AFQjCNEZ4jlsKPiqrai6QsozEKVp2ygoww&bvm=bv.64764171,d.b2U

I have the articles so I will PM them to you later. If anyone else wants them PM me and I can send them to you. Have you had Pulmonary Function testing done to make sure you don't have a primary respiratory problem? Have you had Cardio- Pulmonary Stress Testing done? Sorry, can't remember if you said you've had these or not.

Sorry I haven't had time to formulate a long response. Here are a couple links to some abstracts on Mito disease that you may be able to print off to give to your PCP. They are synopsis articles that the Mitochondrial Disease specialists have put together to help other physicians start the process of recognizing and diagnosing Mito disease. http://www.sciencedirect.com/science/article/pii/S1567724913002158 http://www.sciencedirect.com/science/article/pii/S156772491300247X They are only the abstracts as the articles are behind a pay wall. I might be able to get them later but will PM if you I can. Or send me a PM to remind me in a few days since my brain is the consistency of Swiss cheese as far as my memory goes.

Every SSRI/SNRI that I tried gave me horrible headaches. Wellbutrin, which affects dopamine and norepinephrine and suppresses TNF-alpha, helps my POTS symptoms but did nothing to change my headaches. It also helped a little with some of my GI symptoms. Treating mast cell issues helped my GI symptoms more though.

Very good! Just think how handy and convenient to be able to hang your tablecloth in the shower for easy cleaning. LOL I was working in our church's kitchen one day and found a couple pairs of the mesh panties that they give women in the OB-GYN section of the hospital to hold pads in place after surgeries or childbirth. Someone had apparently donated them and they had been mistaken for washcloths. Maybe we have another POTS patient in our church? I know I didn't donate them.......or at least I don't think I did.

Hi. Sorry you're having more symptoms these days. I frequently have periods of sustained low blood pressures and have been having them for the past several weeks, along with a flare of many other symptoms. Sometimes I'll have a few weeks of high (for me) blood pressure as well- although that is less common. I've been diagnosed with POTS and NMH in the past. Personally I'm attributing this flare of symptoms to the fact that I always get one this time of year when my allergies hit. Between the allergies aggravating the immune system and histamine being a vasodilator, I'm guessing it's just not a happy combo for my already stressed and barely compensating body. Hope you get some relief soon.

Hi. Welcome to the forum. Headaches, particularly migraine type headaches, are very common in POTS patients. For the first few years I was sick I had horrendous headaches and they definitely were triggered by exercise, although they occurred without activity as well. Propanolol didn't help mine either. Once I saw a POTS specialist who understood the connection, he had me try Gabapentin which didn't work for me, but Topirimate (Topomax) did. That cut my headache severity and frequency down significantly. Doing antiviral therapy also seems to have helped so between the two I rarely have them any more. Sorry you're having to suffer with them so. A regular neurologist might be able to help get you started with some other treatment options before September when you see the Dysautonomia specialist.

More commonly narrow but occasionally I'll get something like 124/45.

MakeMe- I can totally relate to being the Go, Go, Go person who pushed thru everything. If you had told me 5 years ago how I would be now, I would never have believed you. The first 4 years after I got sick, I was sure that exercise was going to be the cure if I could just find the right kind. Now I wonder if I would have backed off early on if I would be in better shape than I am now. Sarah Myhill MD recommends that you don't do any exercise until you feel absolutely ok doing nothing and have energy left over at the end of the day. That's what you need to allow healing to occur, she says. Then, once you are in that situation, she has you start adding exercise in very slowly, once a week doing specific exercises that build mitochondria. However, until you are in that position of feeling absolutely ok doing nothing, she recommends you cut back more and more and more until you are. When you have been that go-getter all your life, it's almost like you need a personality change to do what she recommends. She recognizes this and says that the personality of the people who tend to have this condtiiton is the wrong type to heal from it. Welcome to the club.

Finally some researchers seem to be catching on to what a lot of dysautonomia patients have known (or at least suspected) for a long time. http://www.ncbi.nlm.nih.gov/pubmed/24662556 Evidence seems to show that sympathetic nervous system dysfunction appears to be common in ME/CFS, Fibro, Irritable Bowel Syndrome and Interstitial Cystitis. Nice that it's showing up in mainstream medical journals too.

I have noticed the same thing. Monitoring salt intake along with fluid intake and checking BP and all kinds of various combinations. I'm not convinced that for me personally drinking a lot and increasing salt helps my symptoms

May 12th has been designated as International Awareness Day for ME/CFS, Lyme and Fibromyalgia. There is a facebook link here https://www.facebook.com/may12th.awareness for anyone who wishes to participate by "lighting up the night" with colored light bulbs, ribbons, trying to get articles in local papers, on air or in any other way trying to help raise awareness of these devastating diseases. May 12 has been chosen as it was Florence Nightengale's birthday and it is believed that she suffered from ME/CFS after she returned from nursing in the Crimean War in the 1800s. It is estimated that 70% of ME/CFS patients have POTS/NMH/OI so there is a huge overlap in patient populations here. ME/CFS and Fibromyalgia are also very frequently seen to occur in the same patient. There is extremely poor funding for research for these diseases currently. This year only $3 Million is budgeted in the US compared to $18 Million for male pattern baldness. On the other hand, it costs the US economy Billions in medical and disability costs according to Elizabeth Unger of the CDC. Nancy Klimas MD (a well known AIDS and ME/CFS researcher) stated that if she had to chose between the two, she'd rather have AIDS than ME/CFS. That's how bad the situation is for those of us with this disease. Unless patients, their families and friends start making some serious noise, we are going to continue being at the very bottom of the barrel when it comes to getting research money. There are good studies being done now, but much more needs to be done and without funding, it's going nowhere.....and neither are we.

I've had O2 on occasions when I had a couple of those shaking episodes and it didn't help me. My O2 sats are always fine and my pulmonary function tests are fine. When I did my CPETs my O2 sats never dropped but they did find that my muscles weren't able to use O2 appropriately so I was just blowing it right back out again. They are finding that with ME/CFS patients that the body isn't able to get the O2 to detach from the hemoglobin appropriately for some reason. Dr. Cheney has reported that over 50% of his patients do not have their O2 sats drop at all with maximal breath holding (normal is 6-7% drop he says). Several other studies reported at IACFS/ME a couple weeks ago also implicate mitochondrial defects that seem to involve O2 not separating from hemoglobin appropriately so that may be why you feel like you need O2 even when your O2 sats (the amount in your blood) is fine. You have enough in your blood, it's just not getting into your cells. However, using supplemental O2 doesn't help that. Dr. Sarah Myhill's book on mitochondrial dysfunction discusses the problems associated with this here as well as a few other places in the book http://www.thyroidhelp.org/ViP/Diagnosing%20And%20Treating%20Chronic%20Fatigue%20Syndrome%20-%20Dr%20Myhill.pdf

I have never had a blood test before an IV infusion. My standing orders are for 1 liter 3x/ week.

Corina- given how many people are having similar experiences I think your question would be very appropriate for the newsletter. And I don't think any of us would be damaged by learning something about how ocreotide works either. I'd love to hear what the docs would have to say on this topic personally.

I believe the studies have consistently shown that about 10% of patients develop ME/CFS after mono so it's a serious concern, especially since you already have POTS. I'd suggest being VERY conservative in getting back into activity.

I've been having similar experiences the past few days and today was especially bad. Monday I was out all day running errands and felt great. Today I couldn't even get out of bed without losing my balance and falling over and having tachycardia etc etc etc. The weather (my usual scapegoat) has been pretty good here but when I looked at the pollen counts yesterday and today they were thru the roof for a couple of my worst ones. My POTS doc seemed to think it was legitimate that allergies could make POTS symptoms worse since they aggravate the immune system and it's probably already involved in POTS if it's autoimmune. So that's what I'm blaming it on this time.

I had gotten to the point where I was having these paresthesias in most of my body about 95% of the time. I think this is where the antivirals made the most significant and long-lasting improvements as they have gone completely for the most part since I've been on them.

There can also be overlaps between the various types so it's never quite as clear as it seems like it is with having one type or another. The inspire site has loads of good info though. Good Luck Alison!!

Given the evidence that seems to indicate that POTS may have an autoimmune component for some patients, then theoretically anything that aggravates the immune system, like allergies, could make POTS worse. I know I always seem to have more symptoms during my worst allergy seasons in the spring and fall.

By positional sleep apnea, do you mean this Upper Airway Resistance Syndrome? http://www.centerforsoundsleep.com/sleep-disorders/upper-airway-resistance-syndrome/ I suspect I have this although haven't found a location that will test for it locally. I know I can't sleep on my back without waking up gasping for air though so I nearly always sleep on my side or stomach.

Sounds like a good question to pose to the docs for the newsletter Corina. From what I've been seeing on studies from Exercise Physiologists and ME/CFS patients, they are finding all kinds of results they "never see with any other patients". They're still trying to figure out the why's and wherefores and what it all means. In your particular situation with the ocreotide, maybe some of DINET's medical advisors will have some ideas.

I know my doc had recommended magnesium, turmeric and DHA for pain but when I tried DHA or a couple other fish oil supplements it always dropped my BP like crazy and made other symptoms worse as well. I need to go back and spend some time figuring out what else I'm missing in the cycle that keeps the fish oil from working well. Keep reading how great it is for so many different things but don't seem to tolerate it well myself. I think Teitelbaum is somewhat controversial amongst ME/CFS patients as to his legitimacy with his treatments so would suggest using discretion and verify with other resources when looking at doses. But then I do that with any treatment I'm considering and I suspect you do too. Really appreciate all the great links and info you've been posting here Rachel. Thanks.