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  1. Yesterday
  2. JFK


    How much Gatorade should one drink? What it too little? I drink so much water and Gatorade I never know how much of which one to do
  3. I agree completely with @Pistol she knows her stuff. I used to get those out of body/staring experiences when I was at my worst and had overdone anything. I still get them when I flare badly but I never thought they were seizures. I don’t get them unless I am very poorly and right now my stress level is playing havoc with my symptoms. Please take care.
  4. Dear @Scout - I get these as well. I do take autonomic seizures that look like grand mal seizures, but I also have these "staring episodes" that you describe. I know that before a seizure I have this sensation of almost "being outside of my body" and I can't move and hear and see differently. People tell me that I have a blank stare and turn ashen, with blue or white lips, right before a seizure. But I have also had these spells without developing a full-fledged seizure, and those seem to last a few minutes. I was told that this is all due to a loss of circulation to the brain caused by excessive vasoconstriction. In my case this is due to a sudden and severe adrenaline dump. --- I also have vasovagal syncope in addition to HPOTS, and the syncopal episodes caused by that are completely different, with different warning signs before, and I usually only get a few seconds before going completely lights-out. I am sorry that you are dealing with this now, during such a trying time. I assume the stress and unavoidable anxiety from the current crisis will add to our symptoms and can cause a flare. Personally I would call the physician that treats your POTS and inform him/her of these events, he may suggest medications to help stabilize your ANS and help with the pre-syncopal symptoms. For me what always helps are IV fluids. I get them scheduled 3 times a week at home but used to have to go to hospital for them when the seizures and syncopal episodes became too frequent. This would ALWAYS stop them for a while. But I also realize that that may not be possible right now with the crisis. But maybe worth mentioning to your docs that it helps others with the same conditions. I am not sure if this is even accepted in your country. Scout, I wish you the best and send you strength and support in dealing with this frightening part of POTS. Just know that you are not alone and I am here if you need support or have questions. Just PM me if you need help. Be well 😉😘
  5. I hope everyone is staying safe. It's upsetting to see how many cases there are out there. I had a bad feeling this would happen, and I guess it did. But I still have hope. Please stay safe everyone. We will get through this. Self-care and take things one day at a time. Sending virtual hugs.
  6. I know I've mentioned before that I sometimes have short "blips" that feel like seizures. Basically, I will have these moments when my Dysautonomia is flaring quite badly, where my brain just seems to stall. I will stare off into the distance, and not be able to move or do anything. It's like I'm there, but not there at the same time. Usually these last anywhere from as short as 15 seconds, to a couple of minutes. I just had one though where I suddenly felt overwhelmingly sick to my stomach, and then all of a sudden just "went" somewhere else mentally, and the front of my head / brain felt very, very weird. Almost as if there was static in my head. It was the most intense one I've had so far, and I am feeling really sick after it. I don't really know what to do about it. I suppose it just is what it is?
  7. Last week
  8. @KaciCrochetsI know we used to have the same Drs and just wanted to let you know that at the time I was mis(diagnosed) as not having hyper POTS in 2015 it was discovered that the lab was not doing the test correctly. After repeatedly complaining about the sweating/shaking/tremulousness/feelings of doom like clockwork around 4 in the afternoon (and after they discovered a problem with how the lab was doing the tests) I was retested and found to have it. I don’t know if the initial test was during the TTT and I wasn’t left prone long enough or what but Dr D at that time listed me as “probable hyper”. I got hysterical after 15 minutes upright which is definitely NOT my personality, I only lasted 16 minutes and they had enough to diagnose me so put me down. Dr D called me stoic during the EMG test which hurt like h@ll so the hysteria was obviously physical. I was diagnosed with the proper test by the NP a few months later. I have been on various alpha blockers to sometimes good effect since but still get lots of elevated BP with activity/talking on the phone /concentration/ anything my body perceives as “stress”. I have noticed since this d*mn virus kicked off that I get quite anxious with elevated BP about 4pm again. I presume that the alpha blocker is wearing off at that time because I take the next dose around 5pm. It might also be why I wake up around 3-4 in the morning recently. So @Abe I have listed a number of symptoms in this. I should note that I had TERRIBLE insomnia and digestive issues (diarrhea) for years which I think might be related to the hyper aspect.
  9. Dear @KaciCrochets - I also had a catecholamine blood test do confirm my HPOTS diagnosis. My levels were elevated both resting and upright, however my specialist states that it is unusual to also have resting upright levels. The whole reason why they elevate is the act of standing up. Here are the references for catecholamines in the diagnosis for HPOTS per Mayo clinic: According to this if your levels are elevated upright you are positive for HPOTS. The test measures catecholamines by picogram per milliliter (pg/mL); a picogram is one-trillionth of a gram. The Mayo Clinic lists the following as normal adult levels of catecholamines: norepinephrine lying down: 70–750 pg/mL standing: 200–1,700 pg/mL epinephrine lying down: undetectable up to 110 pg/mL standing: undetectable up to 140 pg/mL dopamine less than 30 pg/mL with no change in posture
  10. Full text pdf link below: 2020.03 V2 COVID-19 tips_CGoldstein.pdf
  11. My TTT showed I had POTS, but to check for the hyper kind I had a catecholamine test done, to measure my norepinephrine levels upon standing. My levels shot up to over 600, which is the criteria for hyper POTS; however, my doctor said my resting levels weren't high enough so she didn't diagnose me as hyper, even though she admitted my symptoms act exactly like hyper POTS. 🙄 My symptoms are relieved by taking an anticholinergic, so yeah...I have hyper POTS. I've had several doctors try to diagnose me with anxiety but I only have anxiety and panic when I'm symptomatic, so you may want to take a good look and see whether you actually have anxiety or if it's something that comes and goes with your other symptoms. If you don't actually have anxiety the psych med may be doing more harm than good - I know from personal experience. I hope you can get some help from your doctors, hyper POTS is so difficult because so few doctors know anything about it.
  12. DINET's VP, Chelsea Goldstein posted this question to the dysautonomia community to see what tips people came up with to explain to the "healthy" world, what we have discovered during our years of frequent stay-at-home time and isolation. 2020.03 V2 COVID-19 tips_CGoldstein.pdf
  13. I have POTS and I am currently and have been experiencing a metallic taste in my mouth for the past 4 or 5 months. I was unknowingly overdosing on Magnesium, stopped that with some improvement and then the taste came back full force. I have taken myself off supplements for almost 3 months and I still have the metallic taste. So, after reading your post I am really wondering if it is related to POTS Thanks, Jackie
  14. I agree with you and I was thinking this week that many of us with POTS who have experienced months of being homebound are probably better adjusted to this than many in the general public. We have learned to accept limitations and uncertainty in our lives whether for long stretches in the past, occasional flare ups, or our current situation. We may be faring better psychologically than many others for this reason. I think many of us are already taking measures to avoid illness too, so that is already second nature to us (washing hands, maintaining distance).
  15. Ah right yes cardiologist etc are usually the ones who don't know a lot. I seen a specialist in pots and he didn't explain anything to me or give any advice. Everything I have learnt has been off here.
  16. @Nin - to clarify my message: my autonomic specialist understands these seizures and sees them at times in his autonomic clinic. But even after HE diagnosed me with HPOTS as the reason for these seizures - other physicians such as cardiologists or ER doctors have never heard of them. If you find a knowledgeable specialist ( I am not sure what country you reside in but there are a few good ones internationally ) he/she would be familiar with these and should be able to have treatment suggestions. Having said that - treatment for HPOTS is usually hit-and-miss, more of a " try and rule out " concept that can take a long time. As to the Ivabradine - try it and see. I had to kiss a lot of frogs before we found the right meds.
  17. See this is the worrying thing like you said even renowned specialist don't understand this and then I'm worried I won't get the right treatment to sort this. I can't see how ivabradine alone will work...but I might be wrong.
  18. @Nin - I too have seizures from HPOTS, this was even caught on long-term EEG at an epilepsy monitoring unit by a neurologist. HR and BP go up ( due to sympathetic overcompensation causing sudden and severe vasodilation ) and in about 2-3 seconds I have what looks like a grand mal seizure. this is due to complete loss of circulation to the brain. I used to get them really often but since proper treatment, especially frequent scheduled Saline infusions, I barely get them any longer. Some docs call them convulsive syncope, others call it anoxic seizures or autonomic reflex seizures. For a while I took seizure meds, before they diagnosed them as autonomic seizures, but - of course - they did nothing. And yes - the vast majority of physicians do not know about them. Even after diagnosis by the most renowned dysautonomia specialist in the US docs look at me as if I am a space monkey - they have never heard of such a thing. And when they witness them they just shake their heads in utter disbelief. --- I am sorry you also are experiencing them but I found great relief once I met others that have them. It made me feel less of a freak!!!! I hope your doctors will educate themselves and find the right treatment for you 😉
  19. I know for me, when I first was diagnosed with POTS I was experiencing incredibly horrific panic attacks (seemingly out of nowhere), the typical increased heart rate that all of us have, huge blood pressure spikes when standing up, and terrible pre-syncopy. I finally went to the mayo clinic to see a neurologist, and after lots of testing, they determined I have HyperPOTs. The biggest indicator for me was the significantly elevated blood pressure upon standing, whereas low flow POTS people seem to have blood pressure that drops significantly. Now, I *do* get low blood pressure too from time to time, which can be confusing (though I believe it is due to blood pooling in my legs) but, especially unmedicated and in the beginning, my blood pressure would go really really high.
  20. Yes it must be white coat syndrome! I'm taking my own readings for 3 mornings to email over so he can see, as the medication ivabradine might not be suitable. It was distressing as it happened 3 times and I thought please just put me back down now. Yes true I suppose being dehydrated made me worse as by that time on a normal day I would have had 2 coffee's and 2 pints of water by then. I really hope ivabradine works and I can start walking again.
  21. I've seen a neurologist before the ttt and she knew then I was having siezures and not once said it could be pots related. I think siezures are more of a uncommon symptom of pots and most neurologist and cardiologist are not aware of this.
  22. It is called “white coat syndrome!” Most doctors take it into account but if yours doesn’t, take your home BP machine with you to appointments and ask your doctor to scroll through the memory. My BP is always higher at a doctor’s office than at home too. Having seizures during your tilt table test must’ve been really distressing! But again, even though you didn’t feel nervous, some part of your brain knew that you were being observed and tested, plus being dehydrated. All that is enough to make you more symptomatic. Plus during the tilt table test you have to stand without moving at all so you would never replicate standing for 40 minutes without moving in your normal environment. My tilt table test results were exceptionally screwy during the “long stand” part of the test.
  23. I don't have answers, but the same thing happens to me. My bp at home is around 125/78 but at the clinic it's 155/98. The nurses always seem concerned but the doctor never mentions it. I specifically emailed my clinic about it and the nurse forwarded the message off to my doctor but I haven't heard anything since. I"m definitely adrenaline sensitive but I don't know if that's causing the spikes or what. Seizures are outside the realm of my experience but I would hope you would be referred to a good neurologist after what happened during your TTT.
  24. Thank you for posting. This information is helpful and worth sharing!
  25. We got 2 turtles only. It is actually boring to have a pet like this but my nephews like it.
  26. HyperPotsie here. Coffee does help me. In fact, when I had originally seen my neurologist at the Mayo Clinic, he suggested at least a cup of coffee or caffeinated tea first thing when I get up. I do think it has to do with getting the blood pressure up. I have noticed a pretty big difference on the rare occasion I don't have a chance to have coffee. I have to be careful though, if I have too much, it can lead to panic attacks, probably from over stimulating my system. So an interesting line to walk!
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