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  1. Today
  2. Hello @Aaron_Arkin - even if you have different specialists ordering your various medications your PCP should have an updated list of them. You may want to direct these questions to him, or ask the doc that ordered each med. Whenever ANY doc orders a new med they look over your list of meds to see if there are any contraindications. Whenever I have a question like yours I call my pharmacist. assuming you use the same pharmacy for every prescription they have a complete list of your meds and they can look up your questions. They certainly are all valid questions and my bet would be the pharmacist as the best go-to.
  3. Yesterday
  4. I have very bad asthma and do fine with metoprolol... your mileage may vary, but it helps me quite a bit.
  5. I have HperPots or Dysautonomia of some kind. Additionally, I have low blood volume (right heart). I haven’t been able to see whether a blood clot is blocking it from filling. No way of even getting a CT or finding a doctor during the pandemic. Nonetheless, my BP and HR are out of control. (BP is fine if supine). I’m now taking Mestonin. I also have MCAS and sometimes take Atarax or Benedryl. Since Mestonin effectively increases acetylcholine, and Atarax reduces it, are the H1’s here making Mestonin less effective? As an aside, having a rough time keeping HR level. Coreg works best, but causes bronchospasms (ER worthy). I’m trying Clonidine, but think working on Beta receptors is key. No way to do that due to asthma. Oh, I just started Latuda for unipolar depression (I know, antipsychotic?). I wonder if it actually counters Clonidine by acting on adrenergic receptors. Poly pharmacy is killing me. I’ve got a different doctor prescribing each one, due to no doctor understanding everything. Thanks for your help. I’m a bit of a mess. Priority is my HR.
  6. Maxine, I am wondering if you ever got an answer about breathing smoke. I am having the same issue and wondering the cause.
  7. @WickedMindz - I am not sure if red ears can be caused by HPOTS. As far as I know it can be a symptom of several different things.
  8. @brainchild - what good news!!! I am happy to hear that you have found your "magic pill". I too found the med that helped me and am still amazed to see how wonderful it is to be able to do do certain things ( especially gardening!!! ) 🙃 I wish you a consistent improvement and thank you for sharing your good news!!!!!
  9. Update: I have been diagnosed with ME/CFS. I was seen at an infectious disease specialty office and had a bunch of viral panels done. I’m being treated with an antiviral med and Celecoxib. The antiviral made me tired (sleepy tired was not an issue before this). The celecoxib made a huge difference - very surprising. I can now help with basic gardening - I can bend over and pick a weed without ending up crying from the pain. This is very exciting! My food sensitivities are better too. I’m going slowly with activity and foods, but remembering what I used to be able to enjoy and hopeful that this trend continues I wanted to update this post to encourage others to pursue more testing if it seems appropriate. I’ve tried so many meds for pain and (so far) I’m doing much better with meds that weren’t available to me without the further diagnosis. Wishing all peace and comfort.
  10. Last week
  11. I notice a lot I get like flushing in my ears or in different ears. They turn bright red and feel like they’re on fire sometimes could this be hyperpots too?
  12. Happens to me all the time. I feel it in my throat fluttering or skipping beats. Check my Apple Watch and heart rate when checking is like high 70s to early 90s which is considered “normal”
  13. Hello All, I am very interested in the idea that since the virus interacts with ACE inhibitors, and ACE inhibitors are suspected to be involved in some kinds of POTS, that the coronavirus will have unique effects in POTS patients. I am not saying for ill, necessarily. For all we know, Coronavirus could function as an "upgrade package" that updates the DNA of POTS patients, reducing the severity of their illness! Or we could just be immune to covid! Here is one study on POTS and ACE. I am just posting this to say that ACE is involved in POTS: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3050076/ Here is one a Youtube video saying that Coronavirus has something to do with ACE: https://jamanetwork.com/journals/jama/fullarticle/2763803 This is an important thing to watch! I believe there is a good chance we will learn something new about POTS from the way Covid and POTS interact. In the meantime, I have my own covid prophylactic treatment program of zinc, vitamin C, brocolli sprouts, sleep and regular walks in the sun! V/r, Green
  14. @Abe - if you end up having to go in to see your doc about the fatigue: ask him to check on your vit B 12 and vit D levels. Both are known to run low in POTS, especially since during winter and now we stay in and don't get enough sunlight. I was deficient in both and after supplementation had a lot more energy.
  15. @Pistol, you are blessed. Thanks so much for your reply. I actually called the clinic today to ask my doctor about the fatigue and they got back to me after couple of hours. It's a small practice so they do not have an online conferencing platform. I was told to take my vitamins and a lot of fluids and if it persist for another 3 days, I should come in. My doctor explained to me the addictive effect of Lorazepam but then told me, I trust you because you hate medications anyways. I must say, it has help me in the last few weeks. I am on 1mg 2x daily but I always cut it in half. So max 1mg a day until 2-3 weeks ago when everything spiked for me. Now I sometimes take 0.5mg three times when it get really tough to do anything. I was on Diltiazem(calcium-channel blocker) for years but since 2017, in agreement with my doctor then, she decided to start fresh with something else (Metoprolol - beta blocker). The side effect from it was so bad that another doctor told me to stop it right away. It was horrible. I am kind of in a limbo right now to figure out what works for HBP and I am really tired of going to the doctor and how much it all cost. I tried the breathing exercises but seemed like they never work for me. Maybe I just wasn't doing them right or maybe my expectations were too high. I am going to keep trying though. Thanks for reminding that "this too will pass". It's been a struggle to encourage myself in all this. Thanks so much.
  16. @Abe - I am so sorry that you are struggling like that. The sudden extreme fatigue is plaguing me too at the present. It is part of a POTS flare and the only thing I can do to combat it ( except for IV fluids ) is exercise. I do a few exercises several times a day and that seems to jumpstart my BP to being at least able to function. Then, when the fatigue hits, I go to bed for 10 minutes, do exercises and am good for another round of activity. --- Feelings of panic come to me when my adrenaline surges, I am not sure if you experience the same. The current emergency certainly can make us all very anxious, so it might be due to the as well. I have a prescription for Lorazepam but I am VERY cautious in taking it. I was told that it only masks the symptoms of POTS without any real benefit and easily can lead to addiction because of that. I only take it at night sometimes for sleep. What does help greatly in those spells are deep breathing exercises. I take a slow, deep breath over about 5 seconds and then breathe out slowly through my mouth. This is a known way to calm down your ANS and it works. Do this in a quiet room for a few minutes when the anxiety gets bad. --- Can you video-conference with your doc? If your HR is elevated he may want to put you on a beta blocker. --- It is the best to stay at home and not go to the clinic at the moment. Remember - this too will pass and we will all be able to crawl out of our dens into the sunlight again. Stay healthy, think positive and find at least ONE beautiful thing in every day. I am always amazed how many wonderful things we miss by not paying attention!!! Best wishes!!!
  17. Thank you all @cmreber, @p8d, @KaciCrochets, @Pistol ) for your replies. I haven't been well enough to check your responses until now. It's been a very rough few weeks. Barely sleeping, severe digestive issues and the symptoms that feels like life is being squeezed out of me and every muscles in my body feels like they are been tightened around me. Sudden extreme fatigue. I don't understand that one. One minute I am okay. The next minute, I am holding to dear life. Out of nowhere. Don't know if this has to do with Panic attack or something else but I wasn't feeling any panic when it happens. I have not been lucky with any medication yet and just currently on Lorazepam for my anxiety. I also haven't been able to go to the clinic since the whole stay at home thing started at least to figure out what type of POTS I have or at least test (catecholamine blood test) to confirm. With my condition, I am not sure how good my immune system is so I decided not to risk going to the clinic with the virus thing still going on. I am a 49 year old male and I must say, I get very terrified about all these a lot of times.
  18. Well that's reassuring as my symptoms sound really close to yours as like I said not many people seem to have siezures as well. All I can do is try and hope for the best! Hopefully sort the medication out soon.
  19. @Nin - as you know I also take seizures caused by POTS and also have high BP from HPOTS. I have been on several BB's and they all were safe for me to take. I had no bad side effects, just some only worked for a while and then I had to switch. Now I am on Carvelidol with good effects for many years. Try the Bisoprolol- we all are different in the way we tolerate meds. In my case they all worked on lowering my HR but not the high BP.
  20. The consultant I seen originally was going to put me on ivabradine but has now said bisoprolol. My resting heart rate is around 60 so I don't know if that's why he changed his mind as originally he said he don't want to put me on beta blockers. I've never taken medication for pots. My main hurdle is I get siezures and feel it's going to be hard to find the right medication. When my siezures were reported my heart rate was going up to 180 so maybe beta blockers will stop it getting that high in the first place. I'm worried about the side effects.
  21. What you are experiencing sounds like what happens to me if a take antihistamines. I feel as if that are blips or seconds when my brain is not working. I have been diagnosed with partial seizures but for me this symptom only comes from AH. It is a scary feeling.
  22. I don't get seizures but this happens to me but it's for a few seconds, not a few minutes. I do agree that a lot of dysautonomia is what it is - weird scary symptoms with no explanation of why they are happening. But I agree with Pistol. Call your dr. A lot of doctors are doing video calls at this time and maybe it will be reassuring to connect.
  23. Look up Arachnoiditis and see if it may be the cause of the wet or cold sensation, bladder issues, numbness, tingling, shooting pain, twitching, sensations of something crawling on the skin, etc. I have a spinal abnormailty and am pretty sure I have Arachnoiditis as a result.
  24. JFreeer


    I am recently diagnosed. I found that I need to drink Gatorade but also need more salty drinks and food to help retain the fluid in my system. I drink 2 cups of soup broth for breakfast followed by 32 ounces of Gatorade and eat salty snacks throat the day. That’s what’s working for now. I think everyone is different. it’s a balance of salt and water that’s going to help maintain bp.
  25. Earlier
  26. I am neither an expert, but I think comprehension socks would rather help exercise the muscle of the calf due to good blood circulation. Just a thought.
  27. 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
  28. 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.
  29. 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 😉😘
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