margiebee

I am literally experiencing this right now. My thumb has been twitching for about 24 hours now, it is so irritating! Not to mention I am extremely worried about what the cause might be. It feels just like those "fasiculations" everyone gets in their eyelids and stuff but its been going on for a day now.

Aimes, my PCP suspects mast cell as a possibility as well, and I occasionally have iron deficiency but somehow it can literally vary by day so I never take my supplements regularly. I took a magnesium earlier in the day, I may as well take an iron and B12 for good measure. I will try to ice it though! I easily could've just overworked my hand muscles from all of my finals week typing, ugh haha

I searched "twitching" and this thread came up, thank goodness! Starting in the middle of the night last night my left thumb started visibly twitching. Just looks like little tiny spasms going on or something. I have gotten full body tremors before, but never just one part of my body twitching, so I am so worried! My mom says its normal and it has happened to her before, but I am so uncomfortable and I can't help but think that this is another symptom rearing its head.

I get this feeling as well, it happens pretty frequently when I am driving or alone. It actually seems a lot like derealization or depersonalization to me, I usually feel as if I am not really present physically or that something is very off, almost like a panic attack but not. It usually happens when my HR is shooting very high.

1. I was concerned about this too, but honestly I continued on with salt loading and hydration up until the day before my test and I still had a very "POTS positive" test. Although my condition doesn't fluctuate super dramatically so maybe for you this wouldn't be the same. 2. My test went pretty smoothly as far as symptoms. Sure, it is uncomfortable, but no more uncomfortable than what I experience in my everyday life. I know for others this is different. I also was not given any drugs during it because my doctor doesn't think that's needed. But really, I was SO SO SO nervous during my test that it wouldn't show anything and I'd be back to square one, but don't worry! If you have a good doctor my bet is they won't just "drop" you because of one negative TTT

I am curious about this too! I have failed miserably with taking SSRI drugs alone, they make me go from fatigued to completely hyperactive in one dose, but I am curious if Wellbutrin would be different. I have heard that it can have the same "hyper" effect on some people without POTS, but I'm thinking with POTS maybe its different.

I think about this very often. It just upsets me so much how I was treated, and still am treated by some health care practitioners who are not familiar with POTS. I literally had to pass out in a doctors office, while my HR was being monitored, for anyone to really pay attention to what was going on. Even though doctors have always commented on my sometimes low blood pressure, as well as my heart rate ("Oh you must be feeling anxious huh?" ughhhh). This is why I feel so strongly about talking about my illness with people, because if someone else is going through the same symptoms maybe they can realize that it is not imaginary or all in their head. Just knowing what is actually going on with my body has helped me SO significantly, I don't want anyone else to have to deal with the daily panic of not knowing why they are feeling the way they do.

I have had anesthesia 3 times since I have been ill. The first time I woke up early and then had extreme nausea for around 24 hours after, I was pumped full of anti-nausea meds because I had thyroid surgery so they definitely did not want me puking and irritating my throat/neck area. Second time was pretty tame with no real problems other than a ramping up of my POTS symptoms, and the third time was just twilight sedation and I vomited pretty heavily afterwards but bounced back more quickly. If you are prone to nausea I would really press the issue of getting lots and lots of anti-nausea meds for your recovery, if you are like me you may need more than an "average" person. You're goint to feel strange afterwards of course, but at least in my case I don't think I've had much more problems with it than anyone without dysautonomia or POTS. Just make sure if you are uncomfortable you are firm with them about what you need! Good luck : )

My younger brother is not diagnosed yet, but he shares very similar symptoms to me (OI, syncope, all the other POTSy issues) The one thing that has always differed between us is that he suffers with severe shortness of breath, a symptom I don't generally have, especially when doing activities like running. His doctor determined it is not asthma, suspected a vocal chord dysfunction but that was also not quite it. This, along with the fact that he describes his heart "racing" at the same time, leads me as well as my parents to suspect it is related to POTS. His doctor was initially dismissive of this theory because "young men don't get POTS" but my doctor suspects that he does have it, and that his breathing issues are related to tachycardia. He has always done a lot of things to try to correct this himself such as elevating his feet. He even used to stick his legs in ice after running claiming that this helped, I'm assuming perhaps it helped with the venous pooling. Hopefully once he is tested for POTS we will know if it is all related or not!

tealndk, your response made so much sense to me. It may not really "cure" POTS by any means, but the increase in vagal tone would surely help to improve a lot of people's condition. The fact that it helps certainly to me doesn't mean that it is the cause as well. I haven't read any really in depth scientific reports on it, but at least to me, this strikes me as if one were to say "if an Advil helps your pain, your pain must have been caused by a lack of Advil". Again I am not anywhere near as medically knowledgeable as others here but to me that is just how this theory strikes me. After having read more about this topic, I do not think that this is what caused my POTS at all, but of course increasing my fitness and vagal tone would help with my symptoms for obvious reasons. I have been meaning to get a more regular exercise plan, so this all is certainly motivating. My doctor bascally told me "lots of things can help, exercise can help very significantly if you can manage it", so that's kind of the approach I'm taking. I also do wonder if it is different for those of us who didn't have an acute onset. Unless hitting puberty is an illness, I was not ill or on bed rest in any way when my symptoms gradually began.

Wait if your heart is deconditioned wouldn't that show up on scans like an echocardiogram? Maybe I'm reading this "small heart" thing wrong, I'm not super good with medical terminology. But I mean, I was not extremely active before my symptoms started, but I don't think I was much less active than any other preteen girl. But even with that, I have had lots of imaging of my heart. The only thing abnormal about it was I have a bicuspid aortic valve. The report of my echo I had about a year ago actually states that all of the parts of my heart are "of normal size" except for the inferior vena cava which is "small"

I definitely feel your pain, I was diagnosed with anxiety disorders and it certainly doesn't help that I do have an anxiety disorder, but what was called "panic" was actually POTS. Not to mention, once my primary care doc finally referred me to a cardiologist under the suspicion of POTS, that cardiologist told me "well you could have POTS, but basically that's just anxiety and there's nothing I can do about it". Anyway that is really horrible how your GP treated you, I have honestly never even heard of a doctor "firing" a patient!

Ahhh I see, that is definitely interesting. My doctor has more tests planned for me but so far they are all cardiology related (hemodynamics, etc). I only see a cardiologist right now so I am not sure if he even really deals with the dysautonomia aspect at all. Hopefully the treatments he has in mind will help with the GI issues and not just the POTS. I know that when I was taking my full dosage of a benzo, which helped with my POTS, it also helped significantly with my stomach issues. After doing some more research, I feel like the fact that the benzo med helped my symptoms so much might suggest hyperadrenergic POTS, but I am not sure if that excludes autoimmune causes. Whatever is the cause of mine it seems to be genetic as my brother has similar symptoms, including similar GI issues.

northerndarlene, I actually have thought about mast cell, I do not get flushing or anything like that but I have gotten eczema-like rashes for my whole life and I have a lot of trouble with allergies. It seems a lot of people had GI symptom onset prior to other dysautonomia symptoms? I have had these issues since I was a young child, back then my doctor called it "spastic colon" then when it flared up again later in life they called it IBS

Zap, I am wondering what tests you had to actually "confirm" dysautonomia? I was basically told POTS, probably dysautonomia. Also I am wondering what confirms autoimmune dysautonomia. My ANA levels are totally normal so does that rule that out? The only reason I wonder about that is that my mother has had bouts of Erythema Nodosum which I know is autoimmune. Ahhh so confusing!

I have quite a bit of trouble with fiber so I have wondered about gastroparesis but I suppose I'd probably know if i had that. I have had doctors explain to me that it could very well be dysautonomia-related, but haven't gotten much more explaination than that. My appetite has actually been pretty great in the past month or so, so I've been able to gain back a lot of the weight I lost from when it was really bad plus some extra, which is great because I was much too thin. It is just so annoying because the meds for IBS they gave me make me faint so I have to stick with things like pepto bismol and peppermint to settle my stomach in emergencies.

Before I got my POTS diagnosis, I was also diagnosed with IBS. To me at least that basically meant "your bowels act up and we really have no idea why". I get awful cramping pain from it. I was tested for celiac and also had a colonoscopy, but everything was pretty normal except for some slight inflammation. My doctor said it wasn't autoimmune and more likely just random GI irritation. I did seem to identify some "trigger foods", and those include caffeine, tomato sauce, citrus (lemonade was a big one), some fruits such as strawberries and apples, soy products, as well as soda. I am able to drink soda made with cane sugar so we basically came to the conclusion that it was the high fructose corn syrup causing the issue there. Basically I was just wondering if anyone here has similar problems and/or similar "trigger" foods, and if anyone has found any connection with their POTS-y symptoms. I do have episodes of pain even without eating the bad foods sometimes still, but I have not found any other cause for that, or any solution.

You sound pretty similar to me symptom-wise from what I can see, along with salt loading and hydration I use compression stockings. Not everyone likes them but I am a huge fan. I also have begun doing light, non-cardio exercise to strengthen my legs which seems to be helping some. As far as the underlying cause, I think that's kind of a blurry area because they can tell you that you have POTS from the TTT, and they can do further testing to determine the type (I'm going in for that bit soon). But from what I know you can't really dig much deeper to find out why this has happened to you, as much as I'd like to sometimes. I'm still new to this as well though so I'm not 100% sure of course.

I had the flu in late February, full blown positive tested influenza. I have never had the actual flu before and I have to say I completely understand the hype around it now. I got a sinus infection from it because decongestants elevate my HR too much so I can't take them, and a secondary infection. It took me completely out for about 2 weeks, but luckily I recovered strong after that. Not sure if this works for everyone but when I'm ill I load up on (decaf) green tea, I was skeptical about it but it really does boost my immune function it seems!

I had my appointment with him pushed back to June as well, I was wondering why that happened! I have seen him 2 times before, the first time he gave me the "poor man's tilt table" where I had a pretty strong reaction and then again for the real TTT where again, I tested very positive haha. I do like him a lot, the only thing I have disliked is the nurses at his office seem to be very unhelpful (i.e. they wouldn't tell me why my appointment was pushed back at all). Makes it more difficult to get into contact with him. He does want to continue testing on me with the hemodynamic test and so forth, but apparently this is only to figure out what's causing my POTS so I can have a treatment that's more tailored to me. He also seemed to understand how extremely sensitive to meds I am which I appreciate so much, I can't even explain how many doctors have tried to start me on full-on adult doses of meds and said I'd be fine. I feel on the right path with him

I was wondering about the positive tilt test thing as well. I mean the only test I have had in direct regards to POTS is the TTT and my doctor said that is diagnostic of POTS just not of what type it is, which is why I'll be having more testing. But I've also been told that its more of a "process of elimination", although I have had testing for ANA (which I've been told would cover autoimmune things), celiac, thyroid, liver, various heart scans etc and the TTT has been the only thing abnormal. So I suppose maybe that's why I've been told that, all the other options have been eliminated for me more or less. I am pretty "textbook" for POTS as far as symptoms go, I don't really have anything that falls outside the range and I have pretty much everything that does. But I do have a tendency to distrust doctors and assume they are missing something so I try not to overthink it if I can.

If you do have a chance to go up to Cleveland Dr. Jaeger is pretty great, it isn't easy to get an appointment with him but he covers a lot in each appointment but I find I don't need to see him very often. Unfortunately I am not sure about any further south than that : (

I think that with my strange assortment of symptoms, doctors always thought that it must have something to do with my thyroid because that was the only thing remotely "wrong" with me by their standards. But I do still wonder if it could play a part in it, I don't have the T4 or T3 tested as regularly

I have always been very curious about this. I had a partial thyroidectomy to remove a nodule around 5 years ago, it was benign. They left another small nodule in the other half because they did not want to remove my entire thyroid. I have my levels, TSH along with T4 and T3, tested fairly regularly, every 6 months or so, because every doctor except for my POTS doctor has been convinced that thyroid function is my problem. My tests related to my thyroid are always completely normal though. Like, not even a little out of the range. Perfectly smack dab in the middle normal. I guess mainly everyone has always been surprised that my throid is functioning so well seeing as I only have half of it. But I also wonder if it has anything to do with my symptoms. I definitely had symptoms before the surgery, so it doesn't completely coincide with the onset, but my symptoms have gotten continuously worse more or less.

Thank you! Its good to know about the blood brain barrier thing, I am prone to sleep issues particularly night terrors so that is something I'll definitely have to think about. I've cut my clorazepate dose in half with little-to-no insomnia issues so hopefully I'm good there!