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yogini

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  1. 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.

  2. On 9/24/2021 at 9:29 AM, MomtoGiuliana said:

    Absolutely agree with all you say.  And this is an important point as well.  We are all at higher risk for health problems  when hospital beds, ICUs and ERs are full.  It's another reason to avoid risks right now to extent possible.  I know our regional hospital has put out the message that people should not go to the ER unless absolutely essential.  There are very long waits and they are understaffed.

    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.  

  3. 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.
     

     

  4. 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.

  5. 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. 

  6. 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.   

  7. 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.

  8. 1 minute ago, CallieAndToby22 said:

    Thanks that's good information. I ended up in the ER b/c of so much fluid retention in my abdomen they did a CT scan to rule out certain things and said the constipation was horrific so I'm at a loss. The medication the GI doctor gave me makes dysautonomia worse. :( But yea I don't eat much vegetables because it just makes me sick though I had some veggie last night but I am a pescatarian so I don't eat meat and that is a new thing maybe 6 months now. But yea in my 20's when I was much healthier this was a major problem and the GI doctor kept telling me to exercise and I was already hiking for hours a few times a week and walking a lot on college campus and that didn't help either. When I took guanfacine it helped a lot so it tells me it's related to autonomic dysfunction. Thank you for responding. 

    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.

  9. 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. 

  10. On 6/13/2021 at 9:55 PM, Knellie said:

    @yogini - When your hands/feet turn white, do they get cold too? If they do you could have something called Raynaud's Phenomenon. It is very common with dysautonomia. I don't think there is a treatment, and I don't think that it is "disease" in and of itself, but I think it is a symptom of something else (dysautonomia). Here is an article on it if you want to check it out: https://www.hopkinsmedicine.org/health/conditions-and-diseases/raynauds-phenomenon#:~:text=Raynaud's phenomenon is a problem,%2C stress%2C or emotional upset.

    I hope this helps!

     

    I don’t have raynaud’s

  11. 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.

  12. 8 hours ago, Sarah Tee said:

    I am struggling to wait out the final 3.5 months to my appt with a dysautonomia specialist (cardiologist), but I feel my health is deteriorating and I need help now.

    I suggested to my doctor (GP/PCP) that I should see a cardiologist locally to provide some support while I wait for my specialist's appt. For example, there is a cardiologist who visits to see patients once a month at the GP surgery.

    The GP said that a cardiologist who is not a specialist in POTS/chronic OI would not be able to help me.

    I disagree.

    Wouldn't any cardiologist be familiar with volume depletion, OI symptoms, etc.? Even if they only know about them in an acute setting, surely they know more than a non-cardiologist.

    The GP also said that no-one in the region would know anything about POTS/OI, but I found out that there is a cardiology practice in the nearby large town that has a tilt table and diagnoses fainting and dizziness disorders. Although POTS isn't mentioned, it seems like the cardiologists there would know about it.

    https://www.cvcvictoria.com.au/service/tilt-table-testing-ttt

    Should I keep pushing?

    I am starting to feel like the attitude is "Ignore chronic conditions and let people get worse until they end up in hospital and then maybe someone else can do something".

    In three months, maybe I won't be able to get out of bed, or maybe I'll catch a nasty bug because I'm so run down.

    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).  

  13. On 4/24/2021 at 3:04 PM, NReed2000 said:

    Hi, I found this board when doing research for my husband. He has not been formally diagnosed, but has had symptoms of Dysautonomia for years on and off. He had been doing really well until he got the #1 Pfizer 2 weeks ago. Since then symptoms have been severe. He started on Thermotabs today, hoping this helps. He feels like DRs have not believed him in the past and doesn’t know where to turn ?  He is also a Type 1 Diabetic. 

    Dinet has a doctors list on the website.  If you can connect with a  good doctor experienced in treating POTS patients, he will find improvement.  Good luck!

  14. On 2/17/2021 at 8:37 AM, Sarah Tee said:

    I have been trying to eat a low-carbohydrate breakfast (or mini-breakfasts spread out as snacks) because my symptoms seem to start after eating in the morning.

    But I'm struggling as to what to eat because I have a some restrictions.

    First, I feel pretty blah in the morning, so I need something unchallenging. Second, I can't eat egg in any quantity. Third, I can only eat medium or low fibre foods. (This is all because of some bowel surgery that has gone astray, not dysautonomia.)

    Fourth, I'm vegetarian (but even if I wasn't, I don't think I could face meaty or fishy things for breakfast).

     

    What do you eat for breakfast and snacks if you have to watch your diet for dysautonomia reasons?

    My best effort so far was grilled tomatoes with cheese on top. It was a little hard to face but I think it might have helped.

    Honestly any food is fine to eat for breakfast.  Many dysautonomia patients find it easier to eat less earlier in the day.  Food is ofn easier to digest later in the day

  15. On 3/21/2021 at 4:18 PM, Abe said:

    Anyone experienced this severe a vision issue?  My eyes feel so heavy, painful and blurry.  It feels like they are going to fall out of the socket or go blind.  I work with computers so maybe it has to do with that but my glasses have blue light protection. I'm freaking out badly now because I don't know what I would do with my life if I go blind.  My body tension have been so bad lately to the point that its causing me some neurological symptoms.  Muscle tensions all over my head.  I can't imagine life being like this for the rest of my life.  I don't know what's causing all these.  Not sure if its POTS, anxiety or depression.  Just tired.

    Eye pain can also be a migraine.  I would definitely go to a doctor and get this checked out.  It could be dysautonomia related or not.  I would not assume it necessarily has to do with your eyes or will end in blindness.  Sometimes chiropractors can be helpful and sometimes they can make things worse, so that is also something to consider.

  16. 41 minutes ago, Nin said:

    Anyone find abdominal compression binders any good? I wear knee high stockings at the moment and can't be without them. I just thinking ahead to the summer so I can wear a dress. I personally can't see how it would help as the blood pools to the lower body 😕 

    Gravity pulls the blood downward.  It collects below the heart, including in the abdomen for many people.  This is especially the case after you eat.  I personally can't tolerate abdominal compression, but it helps many people.

  17. On 4/15/2021 at 5:35 AM, Pistol said:

    @Soph1802 - your doc is right, POTS is diagnosed by an increase in HR sustained WITHOUT a significant drop in BP. However - I have both HPOTS and NCS ( neuro-cardiogenic syncope ), the latter causing syncope by suddenly dropping both HR and BP.  In normal people the HR and BP adjust upon standing within one minute and normally do not cause symptoms except for the occasional dizzy spell upon standing up too fast. Either way - you definitely suffer from dysautonomia and treatment for POTS and NCS are similar. Most common treatments for POTS with pooling and LOW BP are beta blockers, Midodrine or Florinef, SSRI/SNRI ... there are more but these are the ones most commonly mentioned. Has your doc prescribed any of these meds? Florinef and Midodrine especially work for people with drops in BP, so they might very well help you with some of your symptoms. For blood pooling compression hose of 30-40 pressure is recommended and can help greatly for the pooling and BP drops, as well do salt and fluid loading. 

    You might find this article helpful:  https://www.dinet.org/info/ncs/neurocardiogenic-syncope-info-r10

    Don't worry - I used to faint all of the time from NCS, and took seizures from HPOTS. Today these episodes are rare for me, thank god. There is a lot of reason to be hopeful!!!!!

    My understanding is POTS is a sustained increase in HR, whether or not your BP changes.  It's quite common for those of us with POTS to have a decrease in BP after standing.   In other words, many of us are also orthostatic, diagnosed with both POTS and OH or NMH.  I have both diagnoses. On some days my HR can be normal and my BP low.  But most of the time I have higher than avg HR and low to normal BP.  

    There are different views on whether the actual classification matters much, as there is a large overlap in treatments.  Some doctors refuse to sat POTS or OH and give a general diagnosis of dysautonomia.  Others don't prescribe beta blockers for OH, but honestly I took (and needed) beta blockers for years, combined with medications that stabilized my BP.  That is a pretty standard combo but it's just a matter of trial and error and what works for your body.

    Everyone has a different mechanism for dysautonomia but in my case I am fairly certain my BP drops due to pooling when I stand.  In order to maintain BP my  then HR increases.   Of course there are also some versions of POTS with high BP, so it is all very confusing!  :)

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