Jwarrior77

Hey @Gabe15024 I just turned 19 and got Pots back in May from what I believe to be some sort of virus. I don't know why my doctors never tested for what it could be. I suspect Epstein Barr but I wouldn't know. That's great to hear that your treatment actually seemed to get rid of the orthostatic tachycardia. My question is do you still have other symptoms that didn't go away or are you more or less completely healed?

Update: I just got back from the optometrist and my eyes came back totally normal. I explained to him about the extreme light sensitivity, flashing lights, dry eye, and abnormal pupil dilation but he didn't think much of it and tried to explain it away which is understandable. I came back with 20/20 vision which I expected as I've had that my whole life. Strangely though he still wanted me to get glasses and said that I was far sighted. He admitted that I had good far and near sight yet still pushed for it. It was kind of strange but I have the prescription for it now and can get them whenever I want. I'm probably not as I honestly don't see a need for it. Anyways the symptoms are still troubling but a basic eye exam showed nothing wrong physically. Hopefully seeing the nuerologist next month might provide some more insight.

Does anyone have experience with ashwagandha helping them. I took it awhile back and it seemed to help my stress response and make me feel better. My endocrinologist also seems to like it. I'd like to hear your thoughts before taking it again because I seem to have hyper-sensitivities to things that even had helped me in the past. Just want some surety thanks.

Funny I posted a topic about this a week ago with my veins dilating in my hands,arms,and feet. At first it was somewhat painful now my vessels are used to it I think. My hand also get really hot when this happens. Still don't know the reason.

I know how you feel. I did my TTT test months ago and this was the findings: Supine 5 min: 85 bpm, 131/85 Supine 10 min: 90 bpm, 128/78 Immediate Tilt: 122 bpm, 138/92 Tilt 5 min: 108 bpm, 131/83 Tilt 10 min: 115 bpm, 119/75 Tilt 15 min: 115 bpm, 130/80 Tilt 20 min: 146 bpm, 103/78 After tilt resting: 121/96 (they didn't record my hr for whatever reason) They aborted it after 20 minutes because I felt nauseous and lightheaded. I asked the nurses after the test was done and they thought I had POTS. This gave me a sense of relief and validation. However when I talked to my cardiologist about the results he was very irritated/angry as if I was wasting his time and said I basically had 0% chance of having it. He claimed it was just "anxiety". He said the reason why my blood pressure dropped at the 20 minute mark was because I was "dehydrated". He also said because I didn't have these symptoms for more than 6 months at the time I didn't have it. Well guess what I have had this for well over 6 months now and im only getting worse. Honestly hearing this from so many Doctors really gets me angry. I have so many videos of my pulse ox showing my resting HR in the 60s jumping up in to the 120s. With POTS it's not a one size fits all criteria. Some people have dramatic increases in hr with it going up into the 170's when standing. Some don't. Some people have blood pressure drops. Some people have an increase in blood pressure. Some people's BP doesn't increase. Some people faint and others have never fainted like myself. If I'm missing something here mods please correct me. As for your question I believe you have POTS and I think your doctor gave poor reasoning to why he thinks you don't. I think you should keep contesting. I'm trying so myself as well but I'm just so weak and tired and sick of doctors not believing that these symptoms I have are very real.

@WanderWonder All the time. My heart rate is constantly dancing around even when relaxed. It never really stays at one or two numbers for long. Even small movements in bed such as rolling over to one side will cause my hr to jump up around 30+beats only for it to come back down again once I'm still.

@Random-Symptom Man I don't have pain with the oscillating dilation which is a good thing I suppose. My eyes have definitely been drier especially right when I wake up. My eyelids seem to stick to my eyeballs sometimes right when I wake up because they are so dry. It usually gets better after that however. My light sensitivity can be sometimes painful when I look at bright lights although it seems some days are worse than others. So I did more digging around on what this oscillation could be and I'm pretty sure I found what it is. It's called Hippus and there are a couple videos online showing what it looks like. They say it can come from Aconite root poisoning but I haven't ingested any of that. Aconite is also anticholinergic which is feeding into my theory that I might have a problem with that. Whether it be autoimmune or something idk. I'll update so see what the eye test shows. @Pistol Thanks so much Pistol much appreciated!

The other day I was looking at my eyes in the mirror and noticed to my dismay that my pupils weren't acting right. They kept constricting and dilating or "going in and out" for lack of a better word. It wasn't too dramatic in size however pretty noticeable and definitely not normal. This was in regular lighting conditions. If I held up a light to my pupil it would constrict however it wouldn't keep steady and started to go in and out again. It's like my pupils are trying to constantly keep homeostasis yet it's failing to do so properly. Seeing this caused a lot of worry thinking that I may have something wrong with my eyes or there is a neurological problem going on. My eyesight is generally pretty good and not blurry or fuzzy. My eyes are really sensitive to light and I get afterimages to almost any light I look at. I also periodically get flashes of purple light in my peripheral vision however "flashing" isn't really the right term. It's more like it just appears suddenly and stays there for a little bit then disappears. It also moves when I move my eye. I always thought it had something to do with floaters reflecting light but maybe not. Anyways I need to schedule an appointment with an optometrist now to see if something potentially dangerous is going on. I've been scheduled to see a neurologist for the longest time now but January is taking forever to come. I know people here have problems with their pupils staying dilated or have Anisocoria but haven't heard people experiencing this. Since pupil function is controlled by the ANS I hope it's just another weird dysautonomia symptom instead of something too major. Any advice would be welcomed thanks.

@MTRJ75 If I remember correctly Decaf-Coffee still has a small percentage of caffeine in it despite it's name. I don't know if that was enough to have an effect on you to cause any symptoms. A lot of people on here seem to be hypersensitive to different things so it might have played a role in triggering something considering you started getting symptoms after drinking it. I think you're right that not eating or drinking anything could have done something. In regards to the skipped beats while standing up I don't really have an answer. I do remember however many months ago I had a strange sensation in my neck while standing up different to the usual throbbing. I grabbed my stethoscope that I got from Amazon and listened to my heart. It was freaking out of course but was also doing triple beats and skipping it sounded like. It freaked me out and I immediately lied down. I kept checking through out the day and it seemed to stop doing it. Hopefully it's just one of those weird Pots phenomena. Hope you are feeling a lot better and that the skipped beats have calmed down.

Same. I'm not going to stress it as it has helped me in the past. I'm more worried about toxins, unhealthy lifestyle/diet to worsen this than good old turmeric.

@KiminOrlando That's so weird I've never heard people really having a bad reaction to turmeric. I've only heard good things on how it helps manage pain and keeps inflammation in the body down. I also take Turmeric for that reason. Hopefully it's only doing good and not bad. I'm probably going to research more on autoimmune conditions now.

Interesting that people either have either a pretty sensitive gag reflex or very little/no reflex. Thanks for responding guys.

Thanks for responding. Your theory on flooding the zone also makes sense. I want to try taking Alpha GPC again as it really seemed to help it's just I have a paranoia about what could happen now. I'm probably going to end up taking low doses with food to see what happens later on. I also get a buzzing/vibrating feeling all throughout my body sometimes which is super uncomfortable. I haven't taken melatonin but I've heard it's helped some people. I'll have to look more about the blood tests and ask my doctor. I know that AAG can be ordered but it's pretty uncommon to do so. Testing for muscarinic acetylcholine antibodies is much less common and I'm pretty sure the only place that does it is some company out of Germany that I've heard people on this forum talk about. It sucks that testing for these autoimmune conditions isn't widespread enough yet that your average rheumatologist could just do a test for. Anyways we'll see.

@KaciCrochets Wegmans Pure Coconut water has always helped me. It's very high in potassium and has magnesium, phosphorus, calcium, and manganese in it. There's only 115 mg of sodium in it however so you'll probably need to get that elsewhere. If I drink too much Gatorade it usually makes me feel sick after a while. I think it has to do with the dyes and synthetic sugar. At least Coconut water doesn't have that and has natural sugar so that's a plus.

After doing lots of research I've noticed that some people with POTS potentially have anti-muscarinic Acetylcholine receptor antibodies in their blood. This can cause a lot of symptoms associated with POTS but most notably dry eye and dry mouth. They are also finding that people with Sjogrens could have these antibodies as well. Some people also have Autoimmune Autonomic Ganglionapathy (AAG) which is a different disorder but causes many POTS symptoms and could also be an underlying cause of POTS. To the best of my knowledge AAG is where your body produces antibodies that block acetylcholine receptors in the neuron - neuron junction. So basically Acetylcholine is being blocked by not being able to attach to the receptors which will then cause a whole variety of problems in the body in which Acetylcholine is needed to work. I'm not a doctor or scientist so the info above may be slightly inaccurate to how it was phrased. Anyways my question would be this - Would taking Choline/Acetylcholine increasing supplements provide a beneficial or negative effect to people with these problems? Would the body have an autoimmune reaction worsening symptoms if taking these supplements? No effect at all? Or a beneficial outcome with more available acetylcholine being able to attach to unaffected receptors more efficiently? Supplement Examples: CDP Choline is a supplement that increases regular Choline in the body. Many people take it for nutritional and nootropic properties. Alpha Glycerylphosphorylcholine (Alpha GPC) is a supplement that increases the production of Acetylcholine in the brain. Many people also take it for nootropic values. Huperzine A is a cholinesterase inhibitor very similar to Mestinon which makes Acetylcholine last longer in brain and not break down so easily. My story: During summer when my symptoms were less I came across POTS blogs showing studies that many people with POTS were deficient in Choline, Acetylcholine, and Betaine (which is a product of Choline). It was suggested to take some of the supplements above to restore better levels. I decided to get CDP choline, Alpha GPC, and Betaine HCL. I first tried CDP choline for a little bit and surprisingly it helped with an increase of saliva production and an overall feeling of wellness that I hadn't had before I got sick. No real other effects noticed however. I then tried Alpha GPC and this had the most notable effects. It had a very noticeable mental stimulation effect that was somewhat powerful. It virtually took away any brain fog I experienced. It also increased salivation and a little bit of tear production. It was pretty powerful so I didn't over do it. I then tried Betaine HCL which increases stomach acid and helps digestion. Not too many effects other than it helped decrease bloating I guess. *These were all taken separately and on different days* Anyways I took them on and off and noticed some symptom improvement. However I decided to stop taking them as you shouldn't over do it with choline supplements. One day after stopping the supplements for a while I was pretty symptomatic and was feeling pretty horrible. I hadn't slept all night, was anxious, low blood pressure, elevated hr when standing up of course, and just a general feeling of death. It was early morning and I was trying to get some sleep. Out of desperation I took a CDP choline considering it helped me in the past thinking I might get better. (You shouldn't take choline when going to sleep anyways as it can be stimulating but I really didn't think it through). After about 5 minutes my HR went into the 160s, Hypertension and started involuntarily shaking. My mom took me to the ER as I was convinced I was dying. It was horrible. At the ER I was flushing in my face and had patches of redness all over my torso. We explained I had POTS and showed them the supplement bottle I took. They didn't know what to do. It wasn't an allergic reaction as I had no anaphalaxis and no itching. They thought it was anxiety OF COURSE even though my muscles were involuntarily shaking all over. My body eventually calmed down many hours later. Ever since then I have been afraid to take Choline , Alpha GPC , and Betaine even though I had perfectly fine reactions in the past. This is what made me think of the antibodies question above. Could that have caused this reaction? I wouldn't know if I do have the antibodies as I would have to go to the Mayo Clinic to try to get tested and that is impossible at the moment. I'm starting to doubt the antibodies are the cause as I had an almost identical reaction to taking a Xanax on an empty stomach after not sleeping all night. Only it was much worse when taking the Xanax. Now I'm afraid of taking Xanax when it should help me of all things. I think my central nervous system went into shock after taking something that effects it when not sleeping or eating anything. It probably overreacted with an influx of adrenaline and nor-epinephrine. Anyways I'm rambling now and I'm sorry for this post being so long. If anybody has any insight to these questions it would be extremely appreciated. Thanks for spending the time to read this.

This happens to me every single time I eat. It was actually one of my first symptoms I noticed. Its really frustrating and annoying. It even occurs when I start chewing without swallowing. One of the weird things that I notice however is that my breathing becomes really slow and irregular to the point where it feels like I'm not getting enough air if I continue to eat. I will have to stop to let everything normalize. My hr gets well over 100 sometimes and immediately when stopping from eating it slowly goes back down to resting hr. I'm almost positive it has something to do with the vagus nerve as well.

@MTRJ75 I would have considered it normal only that my veins have never popped out this dramatically before and I never had my arm veins pop out at all before. It came on so suddenly just like all the other symptoms. When it happens my hands become extremely warm and mottled because of all the excess blood flowing to it. Back in the summer they would actually hurt slightly because of all the excess pressure. It's almost as if my body shunts all my blood to my peripheries even if I'm laying down. @Pistol Sometimes I do and sometimes I don't which is the odd thing. I would say my heart rate is pretty stable only if I don't stand up when it occurs and my blood pressure is usually low.

During the middle of summer a couple of months after getting sick I started getting abnormal vein dilation particularly in my arms, hands, and feet. This would mainly occur if I stood up and walked around as the blood would pool in my extremeties. It would come and go during that time. However now it seems to happen all the time even without standing up. If I get too warm or hot they will dilate. If I get emotional about something they will dilate. If I get anxious it will do it sometimes. And of course it will happen and I don't even know what triggered it. I'm at a loss as to what's causing it. Is it just my ANS malfunctioning and causing the vessels not to constrict properly? Is there some sort of chemical or hormone in my blood stream causing the veins to dilate? Have my veins suddenly for no reason become too overly stretchy? If I raise my hand up you can see the vessels collapse and the blood fall back due to the force of gravity. I know people have problems with this but in my case it seems too excessive. I'll attach pictures that I took earlier back in the summer. Warning as they are pretty gross to look at.

Thank you for writing this. I'm currently dealing with overwhelming anxiety about this condition and constantly doubting that I'm going to be fine as I feel like death almost daily now. We all need some encouragement.

@KiminOrlando I've never been tested for this however I'm really curious about it. Do you have any updates to your test results? I would love to know more.

Is your neck comepletely flat to the surface when you lay on your back? If I lay like that I don't get dizzy I just feel really uncomfortable. My neck and torso usually have to be propped up a little bit to feel somewhat okay. I change positions throughout the day because sometimes I feel better on my back or side while other times I don't. I'm always fidgeting around to see which positions will make me feel somewhat normal.

I don't have any experience with Potscare however I can tell just by watching many of Dr. Diana's videos online that she is a very genuine person and not out to scam anyone. I've also talked with their receptionist Melissa and she was very caring and supportive. They also sent me her book for free which was extremely informative. If you go on their website they have a section of many of their patients who have responded positively to their treatment. Of course not everyone will. I've considered going however it is a lot of money which is really the only thing holding me back at the moment.

Hey guys so I have noticed that my gag reflex is almost non-existent now. I can literally stick my finger down my throat and even touch the end of my throat without gagging or the reflex muscles kicking in. This is particularly concerning because throughout my life I've always had a strong gag reflex. If I were brushing my teeth I wouldn't be able to go past my uvula let alone go touch my tonsils without going into a gagging fit and wanting to throw up. I've done some research on why this is and the most likely reason is that I have some sort of damage or dysfunction to either my glossopharyngeal nerve or my vagus nerve. I suspect there is something wrong with my vagus nerve as I have much more of it's symptoms being dysfunctional rather than the glossopharyngeal nerve. They are located so close together that it could be both however. This could also be a result of Cranio Cervical Instability that I'm also closely looking at as it can also impair gag reflex. For a long time now I have suspected that many of us have some sort of dysfunction with our vagus nerves as if you look up "vagus nerve problems" it's striking how many of the symptoms line up with ours. The vagus nerve is also essential for our parasympathetic nervous system to perform and work as if it is impaired in some way our sympathetic will dominate not allowing us to calm down. I think we are all familiar with that. So my question for all of you is - does your gag reflex work well? Have you ever lost it or does it work perfectly fine? If you don't know I would very much appreciate if you could check it with a cotton swab or something hygienic like that. Don't do it when you are in a flare as I don't want to make anyone feel worse. Your replies and contributions to this would be very much appreciated as I am extremely curious to what you find.

@Pistol Thanks for responding! I'm glad to hear that the IV fluids really helped you. I'll definitely look into getting them as I've heard it's helped many others as well. I did notice that when I went to the ER and they administred the fluids it did help me feel better. Sometimes when I went they didn't give me fluids however which was odd as I thought it was the standard procedure to do so. Now that I remember, my HR went down much faster when they did opposed to when they didn't. I should probably ask next time. I currently don't see an autonomic specialist at the moment as they aren't any in my area however I'm aware I need to see one. I have an appointment with a neurologist but have to wait 3 months before I see him because it's back logged apparently. I've calmed down a lot since I've posted so hopefully it won't come back. I'm probably going to try to get more rest now as my sleep schedule is all over the place.

Hey @Random-Symptom Man sorry to hear about these new diagnoses but I do know of some things that can at least help with one of them. There are a couple things that can help peripheral neuropathy as the peripheral nervous system is much easier to treat than the CNS. There have been many studies that show that Vitamin B1 can help treat or even reverse nerve damage and is one of the most important B vitamins for this. The other ones that could help with this would be B6 and B12. They all help restore and protect the myelin sheath around the nerve. Benfotiamine is a fat soluble version of B1 which is much easier to absorb than regular thiamine. It's better to take it with something high in healthy fat as that's what it needs for it to be absorbed well. It's been well known to help diabetics who have peripheral nueropathy. It is recommended to get the B6 and B12 in their methylated forms because it's also easier absorbed. Also a cod liver oil supplement high in DHA and EPA is also great for nerve and brain function as well. Taking the benfotiamine with it would be great as that is how it can be absorbed. As with the Narcolepsy and sleep issues I'm not that sure on what could help unfortunately. Do you have full blown Narcolepsy in which you just fall asleep midday or is falling asleep at night just really easy to do? I wish you all the best!