Jump to content


  • Posts

  • Joined

  • Last visited

Everything posted by Pistol

  1. @Heartbroken - I will pass on your question to the webinar team. Personally - I too have HPOTS and cannot wear compression hose due to Raynauds syndrome on my feet ) know that any circulation problems as well as neuropathy and arthritis CAN cause pain while wearing compression hose. Have you checked with your doctor? I do not believe that HPOTS itself would cause pain. It is also a possibility that the hose is not measured well enough and is possibly too tight, this can also happen if your legs swell during the day for any reason. I hope this is helpful. Be well!
  2. @Nin - yes, you should still wear compression stockings. In some cases of HPOTS the blood vessels first go too limp and that is why the sympathetic NS kicks out so much adrenaline - in an attempt to compensate for the vasodilation. So if you wear compression hose you can prevent this from starting n the first place! The only time you would not wear them is if you have problems with circulation in your feet. i have Raynauds syndrome in my feet, for example, so I cannot wear them.
  3. @MTRJ75 - you can watch all of the webinar presentations on our you-tube channel. Next Tuesday at 1 pm we will see the first viewing of COVID and dysautonomia, but they are always available to view on you tube after the first viewing.
  4. I agree! Years and years I spent trying to find the cause of my HPOTS, when even my - awesome and super smart - autonomic specialist warned me that the cause may never be found. I was sure that if the cause was found the cure will follow. Oh, how much I yet had to learn! So far - in my case - we know that it is both genetic and autoinflammatory factor contributing to my symptoms. Both cannot be cured and only be treated symptomatically. BUT - what I did realize is that I CAN identify my triggers and work on avoiding them, if possible. And that has been very effective in avoiding as well as stopping flares, increase my quality of daily life and put me back into a position of - well, some - control over my body. @TorturedSoul - for me UTI's are strong triggers. and I am at risk for getting them due to having IC ( interstitial cystitis ). I know instantly when I have one, just on the way my POTS reacts. And since I can call my PCP for an antibiotic immediately we have avoided many flares this way. Recently I had a UTI and the very same day I started the antibiotic all of the symptoms ( even lightheadedness and tachycardia ) dissappeared! So I agree with @Rexie that the UTI might have been a trigger rather than the cause.
  5. Hello @Waylenzdaddy - welcome to the forum! I am sorry you are dealing with all of this, seemingly on your own. If you don't mind me asking, what are your symptoms? In addition to the usual HR increase of 30 BPM upon standing there is a myriad of other symptoms that occur in POTS, and unfortunately most of us experience all of them. You mention that you had "an attack" that landed you in the ER but did not say what symptoms you had at the time. It is perfectly understandable that you worry about having an issue with your heart, especially if you have symptoms that are scary ( many of us do ). But as long as your physician has done all of the tests and everything comes back structurally normal you are OK. I have severe HPOTS and used to have frequent syncope, seizures, extremely high BP, chest pains, palpitations ... very scary symptoms. But all of my cardiac testing always came back completely normal, which was assuring. Have you had an echocardiogram, stress test, Tilt table test? These are all commonly ordered tests for POTS-like symptoms. Especially the TTT should give you an indication whether or not you have POTS. If you have not had on, did your doctor ever check your HR and BP lying, sitting and standing? That is called a "poor man's tilt", and often gives a clue towards POTS. It is always recommended that you keep a diary of your HR, BP and symptoms. It is not necessary to be overly occupied with your HR and BP, since it fluctuates from minute to minute for anyone. But to establish a "norm" by checking it twice a day at rest and then whenever you have symptoms can give a clue as to what is going on. I hope this is helpful. Please keep us posted on your progress!
  6. @cmep37 - thank you for your response, that is exactly I was looking for - someone who also runs fevers that are unexplained! I am still not sure if the still ongoing fevers are residual from the inflammatory reaction or a result of the dysautonomia being triggered by all of the stress my body has went through these past 8 weeks. Huh - at my Family Practice they do not allow anyone that has had a fever within 3 days inside the building. So I have actually only been seen via telehealth appointments, and with the symptoms I had it was a bit difficult for the doc to examine me! I truly wonder - what do they do with all of the patients that have the flu, or pneumonia, or tonsillitis? I do appreciate telehealth, but I also know that it does not replace a physical exam! IMO: enough is enough, use common sense and treat the patients that have a fever for reasons other than COVID! Here in the US the health department decides when the quarantene period is over, and mine was over after 10 days. Yet the doctors office still would not allow me inside after 4 WEEKS! Just because of the fever!
  7. Hi, I am wondering of anyone has a problem with body temperature regulation from dysautonomia? I am experiencing autoimmune issues currently, which always make POTS worse for me. Part of this are frequent unexplained fevers without an infection. I get IV fluids three times a week via port for POTS and normally tolerate them really well. However - these last few weeks I have been getting extremely cold, with shivering and uncontrollable shaking after about 10 minutes of infusion. The fluids are usually room temperature and never caused this reaction before, but I have been warming them up to avoid the cold reaction. Shortly after the freezing sets in I get a fever between 101.5 and 102.8. Whenever this happens I stop the infusion, take Tylenol and rest. The fever usually lasts for 24 hours. This might be due to hyper-responsiveness of the ANS from the inflammatory condition, but I also read that dysautonomia can cause chaos with temperature control ( since thermoregulation is part of the ANS ). Does anyone here experience problems with body temperature control, specifically unexplained fevers? I also do not sweat, and I know that this is also caused by dysautonomia, and may contribute to the temperature problems. Any Input or sharing of experiences would be greatly appreciated.
  8. @DysMomofTwo - I am so sorry you are going through this! My first question is - are you sure you are not having an allergic reaction to the contrast? -- I know the feeling of having a fever without a fever and the other symptoms you describe - when I get them I feel like my blood pressure is soaring, but in reality it is low! The best advice I can give you is to rest until you are better ( and you will be ), drink plenty of fluids and try to not get stressed or overstimulated ( going by your forum name DysMomofTwo I assume that is impossible? ) If your symptoms do not improve after a good night of sleep and ample fluids I would ask someone to help you with your chores ( and kids? ) so you can rest. Pushing yourself usually makes things worse, so it is essential that you get the uninterrupted rest that is needed to calm down your ANS. Once you feel better and get your energy back make sure you dont jump in full-on right away. Hope this is helpful, feel better soon! Keep us posted on your upcoming testing!
  9. I am glad to hear that, it is sooo important! I too trust my autonomic specialist despite the fact that he had to try many, many meds before finding the right combo. But since with dysautonomia it is all hit-and-miss we do have to kiss a lot of frogs before finding our prince! Stick with their recommendations and I hope the stresstest will give answers. Best of luck!
  10. Could be the Amlodipine causing this, although if I remember correctly you also had increase in BP just on the Carvelidol ( but could be the low dosage ). Tachycardia could be expected with Amlodipine.
  11. @MikeO - its not perpperone but PEPPONCINI - pickled whole peppers
  12. Hello @Bailee - yes, that sounds like HPOTS. I have it, and for me my HR and BP easily jump up to 180 and 160/110 and I either pass out or have autonomic seizures. ( These are caused bu the sympathetic NS causing all of the blood vessels to constrict so fast that there is no circulation to the brain ). There are several articles under the Information Resources tab, and here is a brief Overview: The most important thing to consider in HPOTS is that the commonly prescribed POTS meds like Florinef and Midodrine do not work. Treatment often is geared towards dilating the vessels, whereas in "regular" POTS meds are given to constrict vessels. I had great success with Carvelidol ( beta blocker ) and Diltiazem ( calcium channel blocker ). I also get IV fluids several times a week and am pretty well controlled now. Increasing fluids is still recommended, however check with your cardiologist about salt intake with high BP. The most important thing that helped me to control my symptoms is careful regulation of my daily activities. I have found that if I push myself I pay for it with increased symptoms and days in bed or the wheel chair. I am disabled, so I have the ability to do what my body allows me. During good spells I am quite active ( no strenuous exercise though, just a short walk and a few reps on the rowing machine ), and when I am not doing so good I may mostly stay in bed and just do exercises lying down. I do make myself get up every 30 minutes though, that helps a lot to maintain orthostasis. I know you are not really able to stand up right now but hopefully with proper medication that will improve. Consider yourself lucky - you have the first stepping stone towards finding the right treatment! To properly diagnose HPOTS usually norepinephrine levels are drawn after 30 minutes of rest and then again after 30 minutes of being upright ( in your case it probably would have to be earlier ). If the NE ( adrenaline ) level after being active is above 600 it is considered HPOTS. But you probably get away with a diagnosis just based on your BP, HR and symptoms. Don't be alermed if many of the cardio-tests come back normal. Remember - POTS only affects the ANS, so structurally our hearts and bodies are well ( unless you have unrelated health problems in addition to HPOTS ). For many of us even autonomic testing comes back completely normal! That is one reason we so often get misdiagnosed. I hope you will find good doctors at Cleveland and hope that successful treatment is right around the corner! Good Luck!
  13. @MTRJ75 - you worded your questions perfectly! We will bring this questions up at our last session, the roundtable discussion with patients and healthcare workers. Look for it the beginning of November! Thanks for your Input
  14. @sunbun - I too get slow HR from time to time, always did, even when I was at my worst with HR's in the 180's. Some days I just run in the low 50's. As to the high BP - there could be all types of reasons. What my physician told me about the reason for these changes " It all depends on your autonomic tone ". I think it is possible that the salty food in the morning can have something to do with it. I would worry more about the high BP then the low HR ( cardiologists dont really worry about a HR in the 50's, especially without symptoms. But the BP is pretty high, do you take any meds? Maybe it would be good to hold off the salt for a while until you recover, and I would contact your doctor to inform him of your HR and BP.
  15. @Luckycat13 - without knowing your symptoms it is difficult to determine if anyone has your type of dysautonomia. It would help to know your symptoms.
  16. @MikeO - here is a delicious, easy crockpot recipe a friend sent me - it is sooooo delicious! 3-4 lb chuck or bottom round beef roast 1 package Au Jus mix 1 package dry Ranch dressing mix 5 - 6 pepperoncini The recipe does not call for this but I add 1/2 cup water put roast in crockpot, add other ingredients, cover, cook on low for 8 hours. It is just soooo good! It makes it own gravy. ( I would not try this if you have to watch your salt intake )
  17. Huh - if there was male menopause I would become a hermit! --- Thanks Mike - husband and daughter are just fine, and I am much better! I appreciate the concern. Hope you will also find some encouraging improvements soon 😉
  18. @MikeO - this can be from amlodipine, It is a common side effect. I had this but it went away after a few weeks. My daughter had to go on Amlodipine for a Raynauds disease and she had to stop it because of the hot flashes she felt.
  19. @Nin - yes. I used to get seizures a lot when I still working and had to push myself in order to get through a day. This made all of my POTS symptoms much worse. In retrospect, had I agreed to disability earlier and would have had to ability to listen to my body when it had enough instead of continuing on - I am sure my POTS would not have gotten as bad. I was lucky in so far that they put me on an epilepsy monitoring unit early on and found that the seizures are caused by excessive vasoconstriction from POTS. This helped a lot, and it stopped them from wanting to put me on epilepsy meds. Once I stopped working and was able to adjust my lifestyle to my limitations everything improved. Of course I now laso am well controlled on iv fluids and meds, so everything together keeps me pretty stable. I am glad to hear that you have found improvement. and I hope it continues. Know that for me too the seizures stopped, and I know Others who also are now seizure free simply from limiting their activities based on thei abilities each day ( which can wildly vary! ). Best of Luck!
  20. I am curious if Longhaul post COVID syndrome is similar to other post-viral conditions, like post-viral malaise? I know of many people that developed tachycardia and orthostatic intolerance after COVID but improved after weeks. Could it simply be due to deconditioning and stress on the body?
  21. Yep, I took 25 mg Carvelidol twice a day and 240 mg Diltiazem once a day, and my BP would still go high! My vessels would keep constricting so much that I took seizures. But since getting regular IV fluids and becoming disabled I have been able to cut down on many of my meds, and my BP has been great! However - I have to constantly adjust my abilities to the whims of my ANS!
  22. @Bailee - since you are highly symptomatic and unstable - are you seeing an autonomic specialist at all? Or at least a physician familiar with POTS and trained in treating it?
  23. @MikeO - I was on Amlodipine 10 mg for a while and my ankles did swell up. But it was not the reason I stopped it, for me it simply didn;t work as well, and Diltiazem was better for me personally. I hope it works for you!
  24. @Bailee - that usually means you are trying to do too much too fast. Regardless what you were able to do before you got dysautonomia - you have a different normal now. You need to start really slow and on the lowest resistance setting. I use a rowing machine and when I am at my best I can only do about 25 reps at once on setting 2 out of 8. If you feel like you get an adrenaline rush you need to stop earlier. It may be better to do a different exercise, like walking or stretching. Also - once you are controlled on medication ( most people start on beta blockers if fluids, salt and compression dont work, but that depends on the type of POTS you have ) your HR might hold up a bit better and you can maybe exercise more targeted. In general if the exercise USES up energy it is not the right exercise for you. Many people in the beginning do simply leg strengthening and abdominal exercises while lying down, since leg and abdonimla muscles help the most with orthostatsis.
  25. Hi - we are getting ready for the presentation by Dr Blithsheyn about COVID and dysautonomia. If you have any questions regarding this subject to be answered at the end of the session ( see speaker series advertised on top of forum page ) please post them here so they can be used. Thanks!
  • Create New...