margiebee

I think my POTS is at least affected by hormones, but I have not verified this yet. I know an exact cycle of symptom worsening that I get around my period, and several other ladies I've spoken to experience the same pattern, or something similar. I think that estrogen does come into play. Hormonal birth control makes my symptoms much worse, and I had the onset of the majority of my symptoms with puberty.

I just switched to Prozac! Kind of bummed because my Effexor was a godsend, but it was causing me night terrors that made it impossible to sleep. Prozac is stimulating for most people, it is working great for my fatigue so far. But this is my second time being on it and both times my POTS symptoms have gotten worse within the first couple of weeks on it, only to get better as time goes on. Prozac commonly causes start-up symptoms like dizziness and lightheadedness even in people without POTS, give it more time and I suspect it'll go away. If they're symptoms like that, it might not even really be POTS but just a POTS-like side effect.

So, something that I seem to have been overlooking hit me the other day. I always say that the onset of my illness seems to have come around age 10. Before then I was pretty much fine. It definitely increased in severity with puberty, but I started noticing symptoms around age 10. Then I realized recently, I had a HORRIBLE severe case of chickenpox around age 10. Like, in the hospital bad. I've heard of the whole viral onset thing, so I'm wondering if this may be the missing puzzle piece for me. Has anyone else experienced POTS being triggered by the chickenpox virus? This is especially interesting to me because I read that chickenpox lays dormant in the nerve tissue after you are infected, and it stays there for life.

Yeah I was going to say, for those who have had an adverse reaction to a vitamin D supplement, it may be worth trying another type. My doctor has said there is no way that the D3 itself could be an issue for me, as it is a naturally occurring hormone in the body, but I am sensitive to chemicals. The first brand I tried seemed to make me extra tired and achy, I switched to another drugstore brand and now I feel fine.

I have a pretty bad vitamin D deficiency, I still haven't managed to get my level up even though I take 2000 IU per day. I'm almost at the point where I'm willing to try tanning to help, but I may just invest in one of those therapeutic lights. I will say, I have issues with constipation as well and the supplements have had no effect on that, and I take a high dose. It may be different for you though, I have bad constipation issues with other supplements.

Bigskyfam, I take Effexor, it helps keep my blood pressure up pretty well! I also wear compression socks to work, just to keep the blood moving up to my head while I'm standing.

SSRI's do nothing much for me, tricyclics make me much worse, SNRI's are now helping me IMMENSELY. My doctor hasn't offered much explaination other than "its helping regulate your chemicals" and that it prevents my blood pressure from dropping.

Not to sound "braggy" or anything, just offering my perspective, I work part-time and go to college full time. I probably push myself slightly past my limits, but I just genuinely can't accept not being able to do these things. I work a sales associate job, so I work with my managers on allowing me to sit down frequently, take lots of drinks, etc. I do take weeks off sometimes. And I only work about 10-15 hours a week. But I feel that this helps me keep a sense of normalcy, and not get too down on life thinking "I'm so sick". Its a balancing game for me.

I would say lifestyle changes helped me about 75%. But keep in mind I'm including a pretty involved exercise routine as part of that. I don't really fit a subtype either, I've had the testing. No neuropathy, blood volume issues and semi-normal hormone levels in my case. Might be autoimmune, but pretty much just the garden variety onset-with-puberty young adult POTS for me. From what I've seen, that seems to be the most responsive "type" to lifestyle treatment alone, but anyone can be helped by these things.

Badhbt, I've totally already mentally prepared myself for the withdrawals, even though we're hoping I can stay on for at least a year or two. Good thing is that I've gone through withdrawals for other things previously and I seem to be the type that bounces back pretty quick, so I'm not too concerned honestly. But thanks everyone! Zomglawlz, I bet you Cymbalta might be a hit for you. They told me it works even better than Effexor, just worse side effects going on (but I'm sure you can handle that, haha). I think there are so many different "types" of dysautonomia, and at least in my case it seems I had to find the one thing out of hundreds of things that could help. Trial and error seems to be the key

Thank you everyone! Honestly, you can't even imagine how many meds I've tried and failed on. Before I went in I wasn't taking anything, because they couldn't figure out what else to try with me. So really, I hope nobody here gets too discouraged. This whole thing can be a long journey, and I'm still figuring out exactly what's wrong with me (add fibro to the list, hey), but I really believe we'll all get there.

So I had a REALLY bad episode (mental health and physical health wise) and wound up in the hospital. Which was good, because they managed to get me started on a medicine that they thought might help both problems, and I was stuck in the hospital which meant I couldn't google the side effects (ha ha). So, although I now know that the withdrawal is "****" thanks to Dr. Google, I've started on Effexor XR. And I feel AMAZING. From the first day I took it I instantly felt my fatigue and pains start fading away, which I now know was from Fibro. Now I'm about a week in and I feel great still, good energy level, no pain, no depression, and my blood pressure is up! Honestly, even though I know about some of the less than pleasant effects, I do not care because this med WORKS for me. Plus, I've already withdrawn off of benzos which from what I can gather is the most "hellish" withdrawals can get. So if anyone's doc suggests this med, don't be too scared off, because if you're like me and everything else has failed, it might help!

Yep! I get worse before my periods- probably due to hormones, and after my periods- probably due to anemia. So basically, periods are just no good for me. Unfortunately, seeing as I seem to be sensitive to hormones, stopping my periods with BC also doesn't seem to be a good option for me. BC pills ramp up my symptoms significantly. I've seen a very precise pattern at this point. Worse immediately before and after, and much better usually about midway through my cycle (so like a week or two after my period). I'm the "sensitive" type, so it makes sense that my body would be sensitive to its own hormones I suppose.

I do not experience the characteristic thirst that I'm told most people get from POTS. I have to remind myself to drink, and although it makes me feel better when I do, I don't ever feel extremely thirsty. There are a lot of times where I don't realize I have not had enough to drink until I'm dehydrated.

I use them instead of compression socks because i don't like having things around my feet, but I got mine online from a compression sock company and they are the 20-30 compression. If you're talking about the calf sleeves meant for running, I've tried those and they don't have any noticable effect on me. IMO the compression on some of those is way low, like hardly anything. So I'd say if it isn't labelled with a compression grade, it probably wont do much for you. But shop around!

I am only diagnosed with POTS and I am extremely sensitive to medications (this is a POTS thing definitely), I get headaches from synthetic fragrances, I have sensitive skin and eczema and as of recently I have started getting asthma triggered by a variety of things. I also have several food intolerances. So yeah, some of us are definitely the "sensitive" kind haha. I'm told mast cell is somewhat unlikely in my case and that its more just my body being dysregulated.

I don't know what to say other than this is so horrible! I honestly cannot even imagine being treated like this. He clearly doesn't even know what he's talking about because I'm fairly certain a diagnosis of somataform can only be made if there's no other physical explaination for the symptoms. It doesn't matter what he or anyone else thinks the positive tilt is caused by, you can't cause it with your mind and therefore your symptoms are not solely based in your head as with a somataform disorder. You have testing to prove this fact. Please if anything, do not take his words to heart. He is just simply wrong. I would definitely file a complaint with whatever board he has to answer to. That behavior is out of line and honestly he doesn't belong in practice.

Thank you! This is very interesting and helpful

I've always been interested in PANDAS since I have OCD, I know it only strikes kids but I'm not far off from being a kid and I've always wondered if its supposed to get better at a certain age. I definitely will look into seeing an immunologist, seems there are many possibilities.

Thank you Katybug! That was super helpful! I definitely feel like there's something wacky with my immune system, but again until I had PROOF that something like that might help I was sort of like "eh, I'll do it some day". But now I'm nearing the end of my antibiotics and hoping this feeling will last, I just feel more "healthy", if you know what I mean. Like I would say I actually feel like a normal 21 year old right now haha

I've heard you have to see a naturopath, not a regular MD or DO, in order to get the "correct" Lyme test let alone to be treated for chronic Lyme. I've always entertained the possibility, but never felt like spending the money since its not covered by insurance at all. But now that I feel that I have a little more evidence that it may help.....its much more tempting. I think the most interesting thing is I can't say the bit about the inflammation markers in the blood does much for me, because mine are always normal but in the lower range. So I don't think I personally have any issue with inflammation.

So the other day I was actually admitted to the hospital with really vague symptoms like extreme body/joint aches and severe fatigue. Well, come to find out I actually had a pretty raging UTI going on. Silly me. Doc says not everyone presents with urinary symptoms, some only present with things like fatigue and body aches. Well anyone, they shot me up with some IV antibiotics there because of how bad it was, and then sent me home with a prescription for Keflex. Now I haven't taken antibiotics in years because I usually vomit. Well, I didn't vomit, and then around day two to day three, the exact opposite started happening. I felt GREAT. The aches started to go away, as they should. But then I started to feel more energy than I have in a while, my heart rate has actually been lower (!!!!) and today I was even able to wake up at 7:00 AM feeling fresh and ready to go. Honestly, even my parents have said that my skin has more color than they've ever seen it with before. At first I was chalking this up to having had such a bad UTI for so long and forgetting what I felt like prior to that, but I couldn't have had the UTI for longer than 6 months or so and its becoming clear now that I haven't felt this good for years. So I'm really wondering what's going on. Any theories? I'm halfway tempted to pursue testing for Lyme now. I never thought that could be it, but now I'm very curious.

I was told I was "tested" for it but I've been reviewing my testing records and I don't see any test that could definitively show if I have it or not. Too much work to try to push for the proper testing from any of my doctors so I've been thinking about just trying the diet anyway. Its just such a daunting thought to think of adding a restrictive diet on top of all of the other issues I deal with as far as my health

I have had symptoms since I was around 10 but just got diagnosed a year ago. So about 10 years from onset to diagnosis. I have slightly different eye issues, I have motility issues with my eyes where they can't focus quickly, but I have no explaination for that yet. As far as other diagnosis, the only other thing I'm dealing with currently is a vitamin D deficiency and potential fibro. I have had thyroid nodules and have had half of my thyroid removed because of that, at a relatively young age. As a wonderful doctor told me recently, "you POTS people never only have POTS" haha. But yeah other than that, I'm just slowly working towards figuring out the type of POTS I have, which as of recent testing seems to be looking like a genetically linked form, possibly autoimmune based. My brother and dad both have POTS symptoms, and that side of the family also has a history of autoimmune illness. I think finding that kind of thing out is vital. But as for feeling like a hypochondriac, I think that's something we can all relate to. But don't make yourself feel guilty for simply trying to find answers so you can feel better!

Your symptoms sound A LOT like me, even down to the joint pain. I was diagnosed with POTS from a tilt test, but didn't recieve any saline as part of that. From my understanding the saline would mainly help if you have hypovolemic POTS (which I do not). But I still feel better after saline so in my opinion I think that could've messed with your results. The refusal to understand on your doctors part is a pretty common experience, I originally had seen just a general cardiologist, and he told me "well it seems like POTS, but that is really rare so I don't think you have that". Because apparently if a disorder is rare, in his mind nobody can have it. Or certainly not "hypochondriacs" like us. After that I had a severe episode in my primary care doctor's office, which was very helpful in scoring me a referral to the POTS specialist at the Cleveland Clinic, who diagnosed me with no issue. I think that if you're seeing a doctor who doesn't specialize in POTS, the chances of getting a diagnosis or any treatment other than "drink more water" is slim. Funny that you should bring up the parathyroid though, because I'm also being evaluated for issues with that right now too. I'd definitely recommend seeing an Endo doc, if nothing else in my experience they are the most thorough doctors available and are able to evaluate you for a wide variety of things.