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Everything posted by yogini

  1. Not sure I understand this response at all. My post was about the timing of taking beta blockers for dysautonomia. There are hundreds of posts on the forum discussing the timing and safety of taking beta blockers for dysautonomia, not blood pressure. The risks you posted have not typically been discussed and seemed to be for other conditions not rdysautonomia, buy your doctor could advise you best.
  2. Yes, most definitely. It can cause you to feel strange. I would let your dr know about that right away.
  3. Dysautonomia is dysregulation of the HR and BP. It just means the body can’t regulate these properly. It is not unusual for people with POTS to have normal or low HR from time to time. This is typically not something that is dangerous as long as your doctor is aware. A full cardiac workup can help confirm there are no issues. What is your blood pressure when the HR is low? I usually had to adjust my BP meds downward when this happened to me.
  4. It’s somewhat normal to have fear of your triggers. To this day I dread taking the stairs and avoid them like the plague. However if it’s to a point where it is causing you to drastically lose weight it might be helpful to seek counseling. Also as others have pointed out, there are lots of ways to adjust your diet to make it work. You can eat smaller meals and figure out which foods make you worse. For me I tend to feel much better later in the day. I can’t eat anything at all in the am until I have a few cups of water. At night I can eat a full meal. I have trouble digesting vegetables and foods high in fiber. Bland foods like rice, plain bread, blain chicken, jello I can almost always eat. When things are really bad that’s all I eat. If I stick to what works for me, I can usually manage. Good luck in feeling better!
  5. The purpose of taking “bp meds” aka beta blockers is different for dysautonomia than it is for heart patients. Dysautonomia patients mostly have a healthy cardiovascular system. We are not prone to cardiac events like someone with high BP due to being obese, having high cholesterol etc. Those are not a concern unless you have another condition. It also depends on the type of dysautonomia you have. Those with hyper POTS have both high blood pressure and high heart rate. Me, I tend to have low BP and low HR. Beta blockers have been around forever are generally considered to be very safe drugs. I found for me that a low dose beta blocker worked better at night since it made me tired. If I took it in the day I was too tired, due to the lowering of BP. My doctor was fine with me taking it at night.I took for years but no longer need the beta blocker,
  6. Thanks for sharing. It is very stressful as I have elderly relatives who got Moderna and are at 6 months after their 2nd dose. There isn’t yet any official guidance on what to do for those not immunocompromised. I have heard that a half dose may be proposed. For my two doses of Moderna. I had fever and exhaustion for about 24 hours. I don’t think these were POTS symptoms. It was painful but after I felt so much relief and I actually went out and did more activities. I will follow whatever reasonable guidance that comes out. It’s an evolving pandemic so I guess we have to be patient with the medical professionals.
  7. Hi Bailee, sorry to hear that you started reexperiencing symptoms of dysautonomia after a long time. I think this is not unusual. I have had it for 20 years. I’m not a doctor but from what I know there is a lot of overlap between POTS/OH and NCS and other forms of dysautonomia. Many people like me have both POTS and OH. And symptoms can be all over the place. They can also disappear and reappear after a long period You may have some other condition as well, but if you have symptoms of some form of dysautonomia - low blood pressure, fainting or high heart rate - it almost certainly connects to your original diagnosis. The good thing is that the treatments have evolved over the years and you can find information on treatments on the DINET page. Testing can be helpful but for someone like me the only tests that came back abnormal were blood pressure, heart rate and tilt table. I had extensive tests of every kind imaginable and nothing ever showed up. What helped me was to get on the right medication and to become more active. I wish you the best of luck in feeling better.
  8. So my personal experience is that these types of treatments help at the margins. But what revolutionized my life was getting on an SSRI. That was the medication that helped me to exercise and improvement built on itself. I then got back into life. Though I still have dysautonomia it doesn’t rule my life any more. Like you I have no “cause” either, thoigh I do believe my condition is post-viral, following a mild virus almost 20 years ago.
  9. This is actually good! Where my family lives it’s so bad 99% of ICU beds are taken!
  10. Yes, my family in heavy Covid areas is all vaccinated but I worry about them getting into a car accident, etc. They're asking everyone to get the flu shot this year so we don’t add to the ER burden. It is expected to get bad/worse around the holidays when everyone is traveling.
  11. Even though this issue is politicized. the medical information/data is quite clear. The pandemic ebbs and flows. Eventually the Delta variant will slow down. The vaccine isn’t foolproof but largely prevents against developing severe Covid. It’s like a seatbelt or a bike helmet. In a bad accident you may die but your odds are much much better with the seatbelt or vaccine. This was a no brainer for me. I got it on the very first day I was eligible. While COVId in my area is quite low I will still continue to be strategic until the pandemic ends. Most cities and states provide information in real time on how many cases are active, positivity rate, hospital beds. You can know the likelihood of getting Covid each time you go out. where I live - northeast - things are under control since people are vaccinated and generally follow the medical guidelines. I was in a rural area in New Hampshire for sometime where there hadn’t been one case of Covid for weeks. At that time, I felt pretty free to be normal. At home in crowded New York City, I am more careful, I have chosen my activities based on facts and circumstances. I do fun things, travel/vacation and see family/friends by seizing the moment when COvId risks are low to do more. I am quite used to staying hone to protect my health. Whatever activities I like to do will be there on the future when I am ready in unlimited amounts. I’ve done them all before. It is no big deal to pause. indoor activities which pose a higher risk are much less appealing at this time. The thought of being in a room with strangers breathing Covid droplets on me is just gross. So much to do outdoors while weather is pleasant. I took two Caribbean trips, with all activities including eating outdoors. I stopped traveling when the Delta variant crisis emerged and I will not visit my immediate family in the states where things are really bad. (luckily I saw them plenty late last year and earlier this year). Even though we are all vaccinated going to an area in crisis where there are no hospital beds available makes no sense.
  12. Pistol. Very sorry you had COVID and developed pneumonia. Glad to hear you are on the mend. In April 2020 I had a mild case of Covid (low fever, lost my sense of smell/taste for a few weeks). I didn’t have any POTS symptoms or flare from this which is unusual for me. Any health issue or unusual event causes a flare. I am still laying low and trying to avoid COVID as I am not convinced that my reaction would be this mild the second time around, even though I am double vaccinated. Too much is unknown. It will be interesting how the research between POTS and Covid develops as there is clearly an unusual connection between the 2. Again, sorry you went through this and hope you are fully on the mend soon.
  13. Thanks all. I believe information has improved a lot. Also in New York Coty where I live lots if people got Covid very early on. I am sure many of them are showing up at ERs now with “long COVID” which can include Dysautonomia.
  14. Ask your doctor but I’ve been told this is perfectly normal. It happens to healthy/non-dysautonomia people too. it’s not a cause for concern.
  15. Thanks everyone for the very kind and supportive wishes. I've seen POTS in the news a lot more because of Long COVID, so maybe that's why ERs here in New York City are much more aware than they used to be. I imagine a lot of confused people flooding the ERs with strange POTS symptoms the way I once did. I was able to meet with my PCP and he ordered an external ultrasound which I had on Friday. Seems it'll be a couple weeks by the time I get my test results and see a specialist but they think it is something like fibroid cysts or endometriosis that can be treated with birth control.
  16. I haven’t been to the hospital in more than 15 years. Today I wound up going to urgent care because of extreme bleeding from my mensural cycle for a couple of weeks which suddenly got worse today. The doctor was afraid that I needed a transfusion so she made me go to the hospital by ambulance. Every single person from the Urgent care doctor to the ambulance workers to the ER nurses and doctors knew dysautonomia/POTS. The doctor told me she has dysautonomia! It was surreal as this was the very first hospital I went to when I first got sick many years ago and people had no idea what I was talking about. Awareness has come along way. My issue is not resolved and I have to follow up with doctors for a bunch more tests, though it is likely something minor like a fibroid cyst causing this. But I still feel so happy that this was such a positive medical experience.
  17. There are a bunch of different causes for dysautonomia. What's going on in your body would depend your particular cause, which your doctor can best advise. Two other things to remember. Dysautonomia by nature has a lot of ups and downs. If you did the same exact thing every day, you might have some good days and bad days. Unfortunately that's just how it is. It's unpredictable and doesn't always make sense. Dysautonomia patients - no mater what the cause is - tend to all have similar stressors which do make things worse. Examples include exercise, menstrual cycle, hot weather, not drinking enough water, not getting enough sleep, overdoing activity, personal stress, travel, etc.
  18. No problem. This is a major problem for me even though I am “normal” with low symptoms otherwise. I literally eat meals of white rice, white bread and/or jello sometimes as that’s ll I can take. I can eat a side of veggies, no problem. But larger amounts or too much in one week and I am screwed. I don’t take any meds as it fixes for me just with eating light foods. Feel better.
  19. I personally get constipated when I eat fiber. Without getting too graphic, when I eat something with a lot of fiber - a salad or a bean burrito - it sometimes takes days to go through my system. During those days I have severe consolation often get POTS symptoms like headache and tachycardia. I think it’s because blood is drawn fo my intestines. My body handles best very simple food When I eat simple foods - chicken and simple carbs - I have far fewer issues. My body simply can’t handle too much fiber. The standard recommendation for high fiber may be better for healthy people with a normal digestive system.
  20. I don’t have raynaud’s
  21. Yes, but helpful and important to check during an episode.
  22. I think ti would be important to identify the cause of your nausea, as we are all so different on this forum. Are you measuring your HR and BP when the nausea is happening? Do you have any food insentivities or allergies? Is it the volume of food that's bothering you? For me often I have to drink lots of fluids before I eat. Ginger ale is always good or peppermint tea. There are also wristbands people buy for pregnancy which are electronic which work well to counter nausea.
  23. There are many many times where I have had to take a day or two off of life to stay in bed. If I simply can’t handle standing or sitting, I generally don’t. I find my body knows when to push and when to rest. I do think it is important to check your vitals when it is happening, though, so you can be aware of how to correct/adjust.
  24. It's a pretty common symptom. It's associated with high and low blood pressure and changes in HR.
  25. Doctors can be hit or miss. Awareness is improving, but I don't believe most cardiologists know how to treat POTS. Getting to the wrong doctor can actually set you back. If there is another doctor in your area on the Dinet list with a shorter wait, that might be worth a try. 3.5 months seems like an eternity but it is not unusual to wait that long to see a POTS specialist. You can also keep calling for cancellations. I am not a doctor, but most people do not get that much worse over a short period of time (unless something external happens like a car accident).
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