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  1. Today
  2. Yeah, not a caffeine thing. Do they have you on fluids? Something else is going on. At least they caught it on the monitor. My guess is that you are in for further testing. Feel better.
  3. So the good news is that it just happened again on monitor....four or five skips followed by boom boom boom. The bad news is that it happened again at all. How can I convince myself this is a pots thing from two days of possible dehydration and no sleep. Its almost like I can feel them sitting there stuck in my chest waiting till I stand up for a few minutes to release them.
  4. This is lending credence to the decaf iced coffee not really being decaf. Once you are well, if your doctor agrees, it might be worth intentionally drinking caffeine to see if the same thing happens.
  5. I was maintained for many years on bisoprolol and found it the least sedating / cognitively limiting of the beta blockers I tried. (Metoprolol and propranolol both gave me terrible nightmares). Switched back to metoprolol after a sustained relapse, which gave better control of heart rate but with additional sleep disruptions and fatigue. I'm now taking ivabradine and find it preferable to beta blockers because it doesn't seem to cause fatigue--I'm still tired from the POTs flares, but much less so than I was on metoprolol. Good luck to you.
  6. Yes I did think it made some sense this way too. The BP has been good today though. Both lying down and sitting.
  7. In general dysautonomia is dysregulation of the HR and BP. Many of us that usually have low BP and high HR get high BP and/or low HR sometimes as part of our symptoms. Higher BP often coincides with low HR, because the heart works harder to pump blood. (The reason many of us get a lower HR when we take in more salt.) This incident doesn't seem too unusual for dysautnomia - even the range of your high BP doesn't seem sky high - but it is best to discuss with your doctor. Also note that if you drank coffee with caffeine that would impact your BP.
  8. Yesterday
  9. @AutumnRose I had the same diagnosis as @Pistol, after similar TTT results. My HR climbed but did not go insanely high, but as soon as they administered the stimulant via IV, my BP and HR plummeted (BP was 70/42) and I couldn’t stay conscious. This was at Johns Hopkins, and they diagnosed me with neurally-mediated hypotension (NMH). My understanding is that NMH is the same thing as neuro-cardiogenic syncope (NCS), but if I am wrong, I welcome corrections! I hope you can find some answers!
  10. I just posted my experience with Bisoprolol on this thread here https://www.dinet.org/forums/topic/30812-ventricular-tachycardia/?ct=1575668280&_fromLogin=1 Summing it up, I would say this drug permanent ruined my life.
  11. The day I took them, (very end 2016), I described feeling as if my lungs no longer worked, that I had to remember to breathe, that I felt like a drunk zombie, that I turned into an old man over-night. So I right away cut the minimum dosage tablets in half which was just enough to keep my VT at bay, never-the-less, five weeks later I am found at work slumped against the wall, the nurse couldn't detect a pulse so she gave me oxygen which made me feel ok, the ambulance then turned up to find my pulse to be 40bpm, so I wonder what it was before the oxygen?, I wonder what it was when I was asleep and had nightmares about not being able to breathe in view of the feeling I now had to consciously breathe? So they took me off Bisoprolol around February/March 2017. When in hospital for VT, the monitors alarm was constantly bleeping because my oxygen was so low, I bought my own oxymeter and found my blood oxygen to be around 85% for half the night. (See attached image). I also had a persistent cough. April of 2018 the breathlessness, the cough and the low blood oxygen just all got better just like that, for no reason, my guess is that the Autonomic Nervous System which is what beta blockers unbalance, took a whole year to correct itself. The ANS is what monitors your blood oxygen and gets you to breathe correspondingly without you needing to think about it. I had many other symptoms of a disrupted ANS, early satiety, a heart beat that would be really variable for no reason, complete loss of the feeling of hunger. The feeling my feet and legs where on fire, numbness of my skin. My memory is now rather poor, I drop things, I instantly forget things I have literally just done. Whilst the lung part now is fine, my oxygen levels with the same meter are now in the high 90s, but I still feel like a drunk zombie, especially when tired, my head just feels numb, people think I am drunk because of my gait. My own view is that the beta blockers did some sort of permanent damage to my nervous system because the ANS was regulating my oxygen and so I had a long term measure of oxygen deprivation. I did a DNA test last year, turns out I have genes that make me a slow metaboliser of various drugs, including beta blockers, this means when I take the next days dosage, I still have the previous days inside of me, and so I gradually became overdosed. My cardiolgist initially fobbed me off with the usual "anxiety" claptrap, but he now apologises, especially as he has another patient with exactly the same permanent side effects from Bisoprolol. I had to be medically retired because of it all. Here is a link of a company that makes medical equipment re Dysautonomia, near the bottom they attribute Dysautonomia to beta blockers, yet its very hard to get anybody in the NHS to believe this, they much prefer to get you out of their office with the "anxiety" fob off. http://www.qhrv.com/dtr_ans_overview.htm Here is a link to a discussion on Bisoprolol from others who have been effected. (Though you might have to sign up to read it?), https://patient.info/forums/discuss/beta-blocker-bisoprolol-withdrawal-and-breathlessness-493734
  12. There are no pots specialists anywhere around here. My pcp and the cardiologist on call hardly know what it is and only because I previously explained it to the former. Still haven’t gotten fluids but I was able to walk around once today without getting out of rhythm. Nervous system is absolutely on fire due to lack of sleep, but heart has been in rhythm today. Gonna request another walk and fluids again later. I feel lucky that some of the cardiac nurses know what pots is. Drs have asked who diagnosed me with POTS and I tell them my cardiologist, yet they haven’t contacted her. I just want to make sure if another out of rhythm episode happens that I’m here with the monster on instead of home.. They did see my BP shoot up with heart rate when they took it standing up last night.
  13. Have you been diagnosed with POTS and do you have a specialist? If so, and if they have admitted you (you said you may be in the hospital for a couple of days) the hospital should consult with that specialist. I am almost positive it would be recommended to put you on IV fluids. Hope you feel better soon.
  14. @kalmazoo , What was the outcome? Have you been able to resolve this? I have the same ailment . Thanks!
  15. Thank you. this is so helpful. It was the standing palpitations which were out of rhythm that sent me here. All of my palpitations have always been in sinus rhythm prior to this. They strangely still have not given me fluids yet even though I have asked. Still have not seen a dr other than ER.
  16. My daughter developed dysautonomia after a flu vaccine. It was an awful 6 months after the shot! Now she’s at a dilemma over getting one so she can see a friend after a kidney transplant.
  17. I do not know how unusual this is for POTS. When I am dehydrated and my blood volume is low, my bp actually goes up. At the same time I will feel faint, dizzy, etc as if my bp were low. Rehydrating can bring my hr and bp down. In general it is not too unusual w dysautonomia for a patient to experience both low and high bp. If you are dehydrated you may notice more symptoms on standing, such as more palpitations. IV fluids help me a great deal when I get into a "POTS hole".
  18. Thanks Kim. My cardiac nurse understands Pots and pvcs somewhat too thankfully. Ive Been wondering if it was truly decaf too.
  19. I was going to ask if you were certain it was decaf. Sometimes they mess that up. Sounds like you are in the right place for them to figure it out. Sorry you're stuck in the hospital. Let us know how you are doing.
  20. Fun development. Ended up in ER. Twice I stood up and had what felt like a bunch of skips and fast beats all jumbled together. There was an inverted t wave on ekg but all other tests fine so far. Looks like I’m spending a day or two here. ER doc confused because my heart beat is fine lying down and gets a little skippy standing up. Let the good times roll. The good news is all my blood sugar stuff is great.
  21. @Miraclemaker11 You may want to check with a naturopath before trying licorice root. It affects some medications. I know my daughter isn't supposed to take it because of her SSRI.
  22. Just want to add that my cousin is so sensitive that she can't take the generic propranolol due to side effects. She has to take the name brand Inderal to get the benefits.
  23. @AutumnRose - my 2 TTT's I had done showed similar results. The first one had me standing there with my heart beating out of my chest, HR increasing, cold hands and feet and then … boom, all shut down and everything plummeted and I passed out. My diagnosis was NCS, neuro-cardiogenic syncope. Next TTT was interpreted by that EP as normal but later ( when re-evaluated by an autonomic specialist ) determined to be clearly positive for POTS. This also was then confirmed with neurotransmitter labs. The best comment I can give you is that with dysautonomia weird things happen, and if doctors are looking for a clear-cut reaction in order to be able to diagnose … well, let's just say they have to put more thought into it, because that won't happen in many cases. Yes - in my experience you can have a diagnosis of POTS even if you have a sudden drop in BP, it depends on what part of the ANS decides to give out or act up. Sympathetic overcompensation can cause sudden increase in HR and/or BP and reactive sympathetic withdrawal can produce a sudden drop in BP and/or HR. Either way is an abnormal result to orthostatic stress and the ANS does not always react the same every time we are upright. This has been my experience in my particular case, so please understand that I am simply talking from my own experience. Best wishes - don't be discouraged by this:
  24. Last week
  25. I have PoTS EDS and Chronic Migraines with aura. I started taking Aimovig about a year ago and it was awesome. Migraines cut down from almost daily to 3/4 a month. Botox had stopped working after almost 2 years and other meds tried had terrible side effects. No noticeable side effects at first with Aimovig, but slowly my hair started coming out in bigger and bigger chunks. Ive lost about half my thickness and thin to begin with so that's a huge negative. Doc says its not a noted side effect but you can find many forums online of people with similar experience. As far as PoTS, it didn't effect me like most meds do, which was great besides the hair loss. The injection is not bad, like a pinch for a few seconds. I am super sensitive to meds and most send me into a crazy PoTS flare, so its heartbreaking I might have to stop this to prevent further baldness. I hope this helps.
  26. Weird thing is before googling, intuitively the elevated BP made sense with low blood volume/dehydration because it was more work to move the blood around to where it needs to be but Dr Google tells me that’s not the case. Just had a reading of 124/79 though so that’s good news.
  27. Hmm...if anything I was thinking the ice coffee which was decaf, but flavored from DD, might have been too much sugar for me on an empty system. (I rarely drink these anymore) Realizing some symptoms are worse lying down too, heart pounding and deep breathing around the hiatal hernia area. Perhaps the coffee irritated that area too. Felt a bit better last two days so I had to go and mess myself up. Trying to get something nutritious in me next couple hours if nausea can improve a bit. BP still slightly elevated above 130/85.
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