westernmass

Bebe- HAHAHAHA I am so relieved I'm not the only one whose doctor suggested my chest pain may be due to my bra!!! I couldn't even believe it. Good lord!

I've always been curious as to what the pain actually is. I've read about referred pain (for instance, when someone IS having a heart attack, the pain in the whole chest and down the left arm is "referred pain"...basically pain in the general area of what is actually in pain) and wondered if it could be vein/arterial pain, or like fluctuations in BP/HR that could be hurting the area...?? No clue. I sometimes get the pain down my left rib cage as well, so have wondered if it could gallbladder/kidney/etc pain, but my docs don't seem to think so. Could be stomach related pain? I certainly have lots of pots-related digestive issues, but that really shouldn't shoot down my left arm/up my neck.

I just was reading the newsletter, and loved it except had the same reaction to that study review!

As others have said, I was in the best shape of my life when I got suddenly sick, have passed the stress tests, and am back up to exercising regularly. It took me almost a year to build back up to what I was pre-POTS. Even though I can and do exercise now, I definitely am not cured and have symptoms every day. I am stronger physically, which is nice, but still have POTS and all that comes with it.

Ryan mentioned that perhaps the test was suggesting that POTS patients became deconditioned after the fact- I didn't get that from reading the article BUT that's the only thing I can think of that makes sense. I could imagine that during the diagnosis process many people would stop exercising (I did until we determined that my heart was structurally sound) at least for a while, and that people who become severely disabled or bed bound obviously become deconditioned. But I can't imagine 90% of POTS is caused by deconditioning! Also, what does "symptom duration = 4 years" mean? Did these people get better after 4 years, or is that just how long the study was?

I was very puzzled by that study.

I fairly often get intense chest pain that radiates down my left arm, as well as nausea (no vomiting though, thankfully) and sometimes I'll get hot and/or shaky. I jokingly call it "heart-attacking", as in "Oh, no, I'm fine...just heart-attacking again)-- LOL totally agree with Katybug I wouldn't be able to tell if I WAS actually having a heart attack! Which is sort of funny, I try to make light of it- but it is scary, and the actual feeling used to terrify me, but now I just consider very uncomfortable.

Haven't been on anxiety meds- if these episodes coincide with coming off of them though, definitely check with your doctor.

Hi everyone,

I have BAD pain, which I originally thought was joint pain but seems to be muscle pain or myofascial pain. The worst location is my neck, it always starts there and then starts to radiate down my shoulders and across my scalp. I have found self-massage (and massage in general, when I can afford one!) is somewhat helpful, as is heat (but can't handle any extra heat this time of year!), but the most pain relief I get is from cyclobenzaprine (flexeril) which is a muscle relaxer. I can only take 5mg per day, otherwise I get bradycardia/palpitations, but it definitely helps. When I have an "attack" of this type of pain, I usually take the flexeril as well as OTC pain meds, try to lay flat and either self-massage the area or have someone help to loosen it up.

Very interesting-- I was recently taking doxy and flagyl at the same time for sibo... Made me so sick I ended up in the ER, I ended up extremely faint, having to lay on the floor shaking and dry heaving, "dehydrated" it turned out but every day I took them I got worse was sad I couldn't finish the cycle. Not sure what it means.

Achilles- sorry to hear this! But maybe will help you get better treatment?

I'd be very interested in any mito articles and info as well.

I have always had and continue to have lots of very vivid dreams. I've also always been a poor sleeper, and that has been worse since pots.

Before POTS I was very fit and exercise was not just an important part of my life but a huge stress reliever! After POTS, when I was given my exercise plan by my doctor... I STRUGGLED through ten minutes of recumbent bike per day. I was supposed to up the time by three minutes a week, until I got to 45 minutes recumbent bike 6x/week. It went much slower than that- at first I could only do a couple days a week. Sometimes I'd get up to twenty minutes, then crash and have to start over at ten. It was frustrating on so many levels!

I am currently at a place where I do upright cardio (treadmill, stairclimber, hiking) 30 minutes 4-5x/week. I do about another 30 minutes strength training, and one or two yoga classes a week. I feel SO much better and stronger! I am able to better tolerate exercise, and can myself being stronger. I still struggle with POTS (cleaning dishes set me off yesterday- spent about an hour passing out and regaining consciousness...ugh!)

I think it's important to listen to your body. Push when you feel you can and nourish/relax/rest when you need to. Take baby steps! Every tiny positive thing is better than no positive thing

Thanks for replying, and I'm sorry you deal with GP!

For now, the GE has uncovered SIBO and fructose malabsorption- both of which could be caused by GP. The FM diet is really horrible- so restrictive! About to start a second round of antibiotics for the sibo... The GE I see again in 8 weeks, and if I'm not better she wants to look into inflammatory bowel diseases... She seems reluctant to consider GP, though I've raised the question a few times now. She said the test and treatments for it are quite toxic-- but that's not a reason to find out! The FM symptoms are pretty similar, so I guess for now we will see.

Is GP something that once you have, doesn't go away? I've been wondering how to differentiate between GP and just autonomic digestive problems... Like someone said above, GP that comes and goes, or like the full blown GP.

I'm seeing her in about a month!

Alex- Interesting, thank you.

OK, first of all- love the article! I will be sending this to my Dr.

Question: in the "Upright Posture" section, he says: "Patients can present with orthostatic hypotension (seen in autonomic nervous system failure) or with orthostatic tachycardia (seen in POTS)."

I have presented with both POTS and OH...can someone clarify what he means by "ANS failure"?? I haven't heard this phrase and it sounds scary.

I had sudden onset last Feb, and still no luck finding underlying causes/conditions/disease. I have a positive ANA, plus GI problems currently being linked to positive tests for SIBO and fructose malabsorption (which could be causing each other, or caused by gastroparesis...or something else).

Question: What's the deal with abnormal sudomotor function? I definitely sweat, but when I had autonomic testing, it showed "sudomotor reflex absent in lower extremities"...and I've never been able to figure out what that means in relation to POTS...what type does this suggest, or what conditions does it suggest? Would this be "neuropathic pots"? Anyone know any good articles about this?

Question: (sort of silly) Does anyone know how to pronounce Dr. Raj? Is it "Rajjj" with a hard J, or "Ray" with a silent J, or something else? I will probably be talking about this article (lol) and want to pronounce it correctly!

I have been dealing with vertigo for the past several months, which is new for me. My doctor recently said I had "fluid in the middle inner ear" and has me on several OTC allergy meds... Not sure if the two are related (vertigo and fluid) but the allergy meds don't seem to have made a difference.

A year and four months at this point. Sudden onset of symptoms (chest pain, presyncope, syncope) followed 6 months later by GI issues and vertigo a bit after. Just diagnosed with fructose malabsorption disorder and SIBO which could explain some of the GI stuff. "Fibro-like" pain... Had a history of that but worse now.

Very frustrating. Doctors don't seem to know what to do. Everything a test "reveals" seems like it could be either a symptom or cause of something else, so it's just a mess

It's taken me about 10 months to build up to what I do now, which is 3-6 days per week exercising consisting of 30-45 minutes upright cardio and 20-40 minutes of strength and stretching exercises.

In the beginning I was doing 10 min/day recumbent bike which was exhausting. The key for me was really slowly increasing the time so that eventually I got up to 45 min recumbent, then really slowly phasing in upright cardio. My heart rate is usually 150-170s while doing cardio. I have to be careful to not overdo it, even when I feel good- which is so tempting now that I'm getting stronger and see "normal" people working out-- but I know overdoing it will cause a setback. I have to be diligent about sticking to my plan.

I'm actually about to start my masters degree in acupuncture and oriental medicine so i am obviously very pro-acupuncture! and for everything- pots symptoms, allergies, etc. i fell in love because after getting sick, seeing so many doctors and having so many tests and trying several drugs... I still felt terrible. Not to mention side effects! I started seeing an acupuncturist, she is my best treatment. As someone else mentioned, I'm not cured, but it's the best I've found for symptom management.

I'm hoping to heal myself and eventually focus on dysautonomia and other chronic illness as a specialty.

Acupuncture is my most effective treatment and I have far better relief from symptoms with acu than any meds I've tried.

Carrie, very interesting! I look forward to looking into that site. It wasn't all too long ago that Atkins was the craze and that turned out to be wildly unhealthy and damaging.

Unlike several of you trying to keep weight on, I've gained 15 lbs since getting POTS. It is really stubborn weight and the heaviest I've ever been (though not an unhealthy weight). I have been struggling to lose, despite eating healthy and exercising. I am getting stronger, which is nice and I know muscle weighs more than fat, but the fat on my stomach is still fat LOL! But I'm just focusing on being as healthy as I can now.

Interesting to see some of the overlaps people are experiencing with diet.

I've tried vegan, gluten free, and a host of food intolerances-free diets. At this point, I don't follow any strict diet with specific rules- BUT I eat very clean. I try to eat a variety of foods. I eat entirely organic to avoid any hormones, antibiotics, and pesticide/herbicides. I avoid processed foods, all soda and sugary/dyed drinks. My food intolerances seem to change- for months I couldn't eat eggs, but now I can, but can't eat pineapples anymore (?). I try to graze with lots of small meals/snacks. I eat mostly vegetarian, with meat occasionally, fish fairly frequently and small amounts of good quality dairy.

I haven't come close to any cures via diet but I do notice I feel better the cleaner I eat. Lots of fruits and veggies

Can someone help me understand this? I don't see why salt is recommended, unless you have evidence of being hypovolemic or having very low BP. If bp is relatively normal (low normal) and there is no evidence of hypovolemia, why salt load? Doesn't that just potentially end up harming kidneys?

Thank you for clarifying! I'm happy to hear its helping your mom. My dr picked this one to help with my "fibro-like" pain, migraines and sleep problems. I of course have a two week trial...during my two week exam period! So extra nervous to try something new. I appreciate your response

I'm about to start a tricyclic as well (amitrityline) and nervous!! I don't want to be anymore groggy, and I've been trying SO hard to lose my POTS weight so I really don't want another med to make me gain good luck!

I second Joann...I haven't thought of it as strangling, but usually have a heavy pressure feeling my head/neck. The "epicenter" is at the base of my skull. This area has been painful for months and months, but in the past 3-4 weeks this pressure has taken over! Feels like it's going to pop! It gets worse when I go from supine to standing. Haven't found anything to relieve it. Good luck! Whoever is getting te MRI- please let us know if they find anything!

I saw his partner at Beth Israel, Dr Gibbons, and am happy to talk privately about the experience.

....your smartphone autocorrects "posty" to "potsy" for you. Because potsy is a word...