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yogini

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  1. If he has dysautonomia, I am guessing he first started noticing it when he went to a higher altitude. I don't believe dysautonomia can start just by visiting a high altitude. But many of us suspect we had it for a long time (maybe even since birth) and didn't notice. Your father should maybe try to get an appointment with a local dysautoomia specialist and get a tilt table test. Or just do a home tilt table test.
  2. Hi, There is info about dysautonomia doctors on the Dinet website, I would try to find one close to you, get a referral from your primary and they can run the test,. You can also do a poor man’s tilt test at home, measuring your own HR and BP. If you google or search the forum you will find instructions. There are a million different medications and treatments you can try which a good POTS doctor can help you figure out. There is also info on those treatments on the Dinet page. I hope you feel better soon!
  3. I took Paxil for many years and it had the best results with few side effects. Some people have a terrible reaction to SSRIs. Others like me do well, so it is a bit of trial and error. You may have to try more than one kind and adjustthe dose. It might be helpful to do some searches on the forum and also some reading on the different SSRIs that are used. Paxil is one of them that has been studied and shown to improve dysautonomia symptoms. I don’t believe SSRIs reset the nervous system. They increase serotonin which helps symptoms.
  4. Thanks! Usually when the slightest thing gets off balance - sleep, fluids etc - even when I eat too much - I get tachy. I am still not sure how I managed to have zero POTS symptoms but I won’t complain!
  5. I had a fever of 101 for a day and maybe 100.4 for a few days. I realized this only because I started to feel cold. 2 days after the fever, my sense of taste completely disappeared and stayed wiped out for about 3 weeks. Luckily it didn't hit me hard or trigger any of my POTS symptoms. This was really surprising to me, since I have post-viral POTS anything that goes on with my body usually triggers my symptoms. (I have very mild symptoms now, don't need meds but sometimes have to spend a day or two in bed during a flare. ) Also there are a bunch of articles of people getting dysautonomia post-COVID, so I assumed mine would get as bad as I had it as onset. For whatever reason I totally lucked out. You may or may not have the same reaction as me. If you follow the guidelines - stay away from people as much as possible and wear a mask if you really need to go out - that greatly reduces your chances for getting it. If you do that there is probably much less reason to worry
  6. Sorry you are going through this. This sounds like a typical post-viral onset of POTS which is treatable (and from which you have a good chance to recover fully). What is your blood pressure? Many of us with high heart rates have been successfully treated with beta blockers. Has your doctor considered prescribing one to you?
  7. A lot of people post on the forum. Some don't sound like dysautonomia (or it's unclear) but your story very much sounds like it to me. I am sorry that you have been dealing with this for so long, undiagnosed. Do you have access to a dysautonomia specialist in your area? I would see if you can get scheduled for a tilt table test. Also, you can do a poor man's tilt at home where you measure your pulse and BP sitting and standing. You can google how best to do this. If you try this a few times and keep track of your HR and BP at home you will get a sense of whether you have dysautonomia. Then (depending on your symptoms) with the assistance of your doctor you can figure out the right treatment. For example, if you have low blood pressure, fluid and salt loading can be of help. Good luck and keep us posted on your journey.
  8. In a normal person, the BP is lowest when lying down, increases from lying down to sitting, and from sitting to standing. If you go directly from lying down to standing it would also increase. If you take it in reverse, BP lowers from standing to sitting and sitting to lying down or standing diretly to lowing down. The reactions you descried above are normal, except that in healthy people BP doesn't drop from sitting to standing. When it drops that is called orthostasis, which is a symptom for dysautonomia. If you are orthostatic while standing, your BP would then correct itself when you sit or lie back down (reverse of what happened when you stood up).
  9. Hi, very sorry to hear about what your wife has been going through for 20 years. The first thing I'd ask is - does hse have access to a doctor ont eh DINET list? I would post separately on the forum indicating where you live to see what good doctors are in that area. Care is specialized an an expereinced doctor would be a big help. I see she's tried some dysautonomia meds but there are many more and sometimes combining the medications helps even if the medications themselves don't. People above have suggested meds which work for them but it is very individualized, so a doctor can best help you figure out what might work for your wife. I also see she can't stand without experiencing presyncope. Presyncope is not fainting and many of us feel like we might faint but we actually don't faint. Personally, if I had stayed in bed because I felt presyncopal, I would never have gotten better and would have deteriorated greatly. Pushing myself to stand and walk, even though i felt very sick is what got me better. You have to be very careful to push yourself without actually hurting yourself. I see that your wife fell and was in the hospital, so she needs to do this under a doctors guidance. But if she can find a way to practice sitting, standing, walking even for just a few minutes a day that will help her a lot. Then you just gradually increase the amount of time. I stood for one minute, then 2, then 3 etc. Then did the same with walking.
  10. Any electronic signal in your home (or wherever you are) can interfere with the measurement of HR on one of these home devices. So a cell phone, wifi, etc can screw it up. Otherwise the apple watch is pretty accurate. If you have a doubt, just manually count your pulse.
  11. Have you looked into nystagmus? Dizziness is often connected to the eyes. I'm surprised an inner ear specialist wouldn't know about this. I was sent to vestibular therapy which was to work on correcting nystagmus. Typically the cause of nystagmus is not related to POTS
  12. It's not unusual to combine a beta blocker with a drug to increase your BP. But most people here take beta blocker for increased heart rate not for anxiety. Beta blockers tend to lower your BP, so it could counter the effect of the midodrine.
  13. In yoga they teach you to keep keep trying to slow down your breath over time. If you can do ten seconds now, in a couple of weeks you might be able to do 11 seconds, etc and you keep going. The longer each inhale and exhale,, the more calming effect it will have on your system. If you learn to slow your breath during these exercises, your breaths in day to day life - while you are not practicing the exercises, will also slow down and you will feel better overall.
  14. Hi, welcome to the forum. We get tons of people posting here who aren't sure if they have POTS, so that is no problem. So sorry you are going through this. Positional symptoms definitely are a strong sign of dysautonomia (though doesn't 100% mean you have dysautonomia). Post-pregnancy is a major time when people develop POTS, so that also seems like an important clue. Are you seeing a doctor on the DINET doctor list? If your doctors are stumped or aren't a right fit that would be the place to turn. You may want to search for a doctor's name on the message board or post about them to see if others have experience because some are better than others. Food intake (volume and type of food) is most definitely related to dysautonomia, so your doctor is wrong about that part. If you are triggered after a large meal, it would make sense to start eating smaller meals and also keep a diary of what you are eating. You may notice your symptoms correlate to certain foods. Some here have food insensitivities and feel tons better when they cut out wheat or dairy. You can tested for those, but start by just watching what you are doing at home. One other thing to note is that beta blockers themselves cause fatigue. So if you are feeling really tired that could be because of the beta blockers. The fatigue as a side effect wears off over time. You can also make it better by taking at night instead of during the day, though check with your doctor on that before doing. Also check the other side effects of your medications because they often contribute to the problems. It is interesting that you describe your symptoms as feeling like you have the flu when standing up. I have never felt that way - the POTS feeling for me is totally unique and like nothing I've ever felt before. Certainly not like the flu for me. I felt like I was walking on an unstable surface, or being chased - sweaty, out of breath, scared, but not flu like. If you have muscle and joint aches it might make sense to look into EDS. I definitely have muscle aches but they are not positional. They're from a lack of blood flow and are constant in every position for me. Sometimes I feel normal lying in bed but when my dysautonomia is acting up I feel pretty terrible even while lying down.. Stretching, yoga, self massage can be really helpful for the muscle aches. I would try to do this a few times a week (or daily) if you can manage. Practicing walking - as painful as it is - also adjusts your body to being in an upright position. The stress test is extremely important because it will help detect any problems with your heart. Everyone's heart rate goes up with exercise that is normal, and not anything to worry about and you are right there with the doctor. (Remember, millions of people exercise for the very purpose of getting their heart rates up) if you have a cardiovasuclar problem which isn't POTS, that could actually be something which is much easier to treat.
  15. Interesting, I don't like breathing out, so breathing 1:1 is usually much easier than 2:1. You can also speed up your breaths or your counts and that also helps to achieve the ratio you want. Over time you get used to it and you can slow down naturally
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