Jump to content


  • Content Count

  • Joined

  • Last visited

Posts posted by yogini

  1. On 4/6/2021 at 6:37 AM, CallieAndToby22 said:

    I'm so sorry, I definitely can't tell you what sleep is, I think I remember but I'm not sure!!?? 

    Thanks. Yea this was pre dysautonomia diagnosis but it lead me to seeing cardiologists. The beta blocker has helped with this but like you said, I need a lot more help which I'm working on attaining, and I think the proper help will lead to sleep. I wish my bladder would disappear though, the constant pain and feelings of urgency are very disruptive. 


    Trazodone is a good medication for sleep, I take some at night. 

    You may want to discuss with your doctor the time of day you take the beta blocker. For example if you take in am, maybe take it at night (your HR will be lower)  or if you take at night maybe it's lowering your BP too much - switch to day. 

  2. On 3/31/2021 at 10:44 PM, MomtoGiuliana said:

    Interesting about caffeine reducing cerebral blood flow--maybe not everyone with POTS is affected that way.  But I believe that I am and this is the first I have heard this.  I actually get increased orthostatic symptoms after drinking anything w caffeine or eating chocolate.  It never occurred to me this was something documented in other people!

    Caffeine is a stimulant which increase the heartrate,  That is also one of the reasons why some us have trouble tolerating it.  It definitely increases my HR but I feel much more alert, awake and I suspect it helps keep up my BP so it's worth it for me.

  3. Hi  I would try doing some different experiments.  For example if you were drinking tap water, try bottled water.  Maybe there is something in your water that you are allergic to. A doctor can confirm but I think it is unlikely that drinking water alone would cause headaches.  If you took in too much salt and your blood pressure becomes too high, that definitely causes headaches.  The way to manage this is to buy a home BP monitor and very gradually increase your intake of salt and or water.  For each day measure your HR and BP a few times and also write down how much salt and water you have. When your BP starts to get too high you reduce the salt, instead of allowing it to creep up.  Water washes out the salt, so it is always important to drink water even when your BP is too high.  I also adjust for my menstrual cycle etc since I retain more fluids around that time.   

  4. Perhaps a doctor could work with you to figure out why your heart rate is so high. 90-120 lying down seems quite high.  I have had this very rarely but can’t imagine every day..If you are diagnosed with dysautonomia I am not sure adrenaline is the cause of it.  For example if your blood pressure is low your heart might be beating faster to try and maintain it. I suspect you will sleep much better when that is sorted out.

  5. I got my first vaccine dose almost 2 weeks ago (Moderna).  I definitely didn't feel well for a full 24 hours after getting the shot.  I got a weird taste in my mouth immediately and then a few hours after, I started to feel strange.  No fever or tachycardia, but I didn't sleep all night.  I was lethargic, had a mild headache and sore back/neck and complete brain fog. It really felt like it triggered an episode of POTS minus the fast heart rate, if that makes sense.  It wasn't unbearable, but I was completely out of it. Then suddenly all the symptoms went away.  So overall, it wasn't that bad.  It will be interesting to see what happens with the second dose.  

  6. 1 hour ago, CallieAndToby22 said:

    Decaf still has caffeine right? I was discussing this in another thread but caffeine cuts off 30% of cerebral blood flow so it could cause the lightheadedness you describe. 

    Do you have salt tablets? I dissolve them in water then drink it quite diluted and it's the only way I can retain fluid. I don't drink what they recommend my bladder problems are horrific and I can't spend all day in the bathroom so it's kind of just do your best. A lot of people drink electrolyte drinks, there are all kinds my bladder just can't handle the citric acid or potassium so I go with the dissolvable salt tablets. 

    Decaf has trace amounts of caffeine.  Caffeine increases blood pressure and HR.  I'm not that caffeine's impact on cerebral blood flow rules it out for dysautonomia.  Some people need it and can't function without it.  Others can't tolerate it.  I've always heard that those who can't tolerate expereinced an increased HR.  I never heard the cerebral blood flow discussion before.

     Salt only works to increase your BP if you chase it with water.   If you are not taking  the recommended amount of water with your salt, you will be less likely to see the benefits of the salt. 

  7. 7 hours ago, peachychou123 said:

    Couple days ago I was on my phone in bed for a while. I try to avoid this because I know it gives me tingly uncomfortable arms due to lack of blood flow. It’s usually mild enough that I can ignore it.

    Well this time when I put my phone down I had extreme pain and numbness in my arms and hands. It lasted hours and I could not get relief from it. It was quite agonising. Because I was having some preexisting chest pains I got very scared and went to the ER. Because my last trip wasn’t too long ago a senior doctor saw me. He was kind of mad to be honest. Of course he had never heard of POTS and didn’t really care to hear about it. Basically he did an EKG and said you’re good - refused to do any blood draws because I had some not very long ago. I was upset by this and insisted this symptom was new but he wouldn’t budge and told me to go back home and rest.

    Well ever since then my arms and hands have been quite painful and tingly on and off. I have no idea what’s causing this. It was the kind of ache and pain when you have a virus but I don’t have any other symptoms of one. 

    My mind always panics whenever chest and arm pain are involved. I have regular chest pain but never arm pain like that. Now it seems like anytime I raise my arms above my head for more than 30 seconds they go tingly and numb. Trying to breathe right so as to avoid hyperventilating which makes it worse. I keep worrying my heart isn’t pumping correctly even though my pulse is strong and capillary refill time is okay. Anytime I get a new symptom I freak out. Anyone else experience this arm pain and numbness?

    If you get a regular heart work up your doctor should be able to tell you whether you are at risk for a heart attack, and the criteria you should use to go to the hospital  Although dysautonomia can feel scary it isn't typically connected to a heart attack.  For most of us, our doctors have advised us that we don't need to go to the ER unless we faint, etc.

  8. On 3/23/2021 at 11:25 AM, Julyrose said:

    Yogini: good point. But yes, my cardiologist has many POTS patients and I feel confident in his assessment . My tachycardia is entirely positional, resolving fully when I lay down. But of course, things can change, so good to be aware of any changes in pattern and bring them to your doctors.

    I am not sure that positional tachycardia is necssarily limited sinus tachycardia.  If you are under the care of a good doctor that treats a lot of dysautonomia, then you are probably already getting the best advice!

  9. On 3/13/2021 at 7:20 AM, Jyoti said:

    Thanks all for sharing your observations on this subject.   It was affirming in that weird way we all recognize to know that something seen as universally good can be otherwise in our experience.  Arm movements, arms over the head--yes @Pistol,  @Sushi--these are definitely not good for me.  And you are right @RichGotsPots, it can be done lying down.  I think it can even be done mentally alone.  If one wishes to.  

    I think I was just feeling crazy--why would three days of 20 minute gentle and loving movement cause me to be considering the ER?  So...thank you!

    Honestly I’m not a doctor but it seems unlikely that three days of doing this would send you to the ER, unless something else was already going on in your body.  If y are already in a flare, then yes, anything can cause it to become much worse. Exercise and wellness activities are all about what works for your particular body and mind.  There is no particular activity that’s benificent for all people. Personally floor yoga exercises worked very well for me, and I started with only 5 minutes.  Starting small doesn’t hurt and if your symptoms aren’t triggered you can quickly build up. 

  10. On 3/11/2021 at 3:39 PM, TorturedSoul said:

    Thank you everyone. Honestly, anything that makes my stomach constrict makes me feel sick. I remember going to a wedding a few years ago. I had sudden stomach pain. A burning feeling that just progressively got worse. I started feeling very ill and so weak. I laid on the floor. I was taken to the ER, but they were so busy it was hours before anyone could see me. I used the bathroom finally and felt a little better so I went home. I often wonder if it was some sort of ischemia or something caused by the stockings I was wearing. I also had a weird episode when I suddenly bent down to put something in my bottom kitchen cabinet (vomiting and nausea). So who knows anymore. Thank you everyone for your responses 

    Same here, I can’t wear abdominal binders and get uncomfortable even with panty hose.  Pooling isn’t bleeding. It’s blood collecting in the blood vessels in  parts of your body below your heart.  You can lie down to make it go away, so that your whole body is level with your heart.  Increasing your blood volume by drinking lots of salt and water tends to help with pooling.

  11. You could check on dysautonomia websites but it’s unlikely there is a lot of research at this stage on dysautonomia and COVID vaccine.  It is a judgement call.  The vaccine makes it unlikely that you will wind up in the hospital or on a ventilator with COVID or that you will get severe COVID symptoms.  To me any temporary vaccine symptoms however harsh would be worth it fir peace of mind, especially because full blown COVID on top of POTS would be really bad.  Even just the worry of going outside or running to the store and possibly contracting Covid causes so much stress, washing hands, social distancing, the inability to see friends and family.  The mental relief will be worth tolerating any vaccine symptoms for me. 

  12. 14 hours ago, CaveGirl said:

    Yes, but when you lay down the lowest point is not the feet. Maybe too little blood flow causes a massive pressure in the head, eyes, ears. Not sure. I however get the same symptoms when doing a handstand against the wall, including shortness of breath and a heart rate that doesn't go up. Getting my heart beat faster fixes the problem. But it doesn't explain why this goes away as soon as I sit up. I woke up over the past few weeks with either a pressure buildup in my legs, in my belly or my head. My heart seems to be healthy. The only thing found during a 48h holter test is that my heart randomly speeds up to 100bpm for 20 seconds or so while I sleep. There were nights where unfortunately nothing else happened and I just slept all the way through. My heart also occasionally does a little sprint during daytime, very rarely though. I always thought it was kind of fixing blood pooling but not sure.

    When you lay down your blood should distribute evenly.  There is no pooling in the head.  You can check your blood pressure as maybe it’s going too high when you lie down 

  13. Hi, so sorry you are going through this. I’m not a doctor but it sounds like you’ve come to the right place. Dysautonomia runs in families.  If your daughter had a positive tilt table, and you are having dysautonomia like symptoms there is a very good chance you have it.  The heavy legs resonates with me.

    If you can manage, slow down, start measuring your heart rate and blood pressure and try to do more moderate physical activities and rest/lay until you can sort out your diagnosis and treatment.  If you have dysautonomia doing the wrong kind of exercise can make things much worse.  If you start to feel sick the best thing to do to avoid an episode is to stop and rest, rather than pushing through.  You eventually will figure out a rhythm and you may feel better and be able to do much more just by getting on the right medicine.  You can start to read and you’ll learn about home treatments like loading up on water and salt.  Best of luck,

  14. 13 hours ago, Mik Thundercloud said:

    I have had some Diabetic Neuropathy diagnosed for several years.  EMG documentation subsequent to painful feet and toes in 2006.  Since that time I have had my BGs under far better control but the Neuropathy continues to develop.  I have experienced Orthostatic Hypotensive issues on rare occasion since 2012 with Syncope only once in 2013.  I have learned to "Sit Down before I Fall Down" when I feel weak and a little dizzy.

    This month, on February 9, 2021, I received the first injection of the Moderna COVID-19 Vaccine at my local Veterans Medical Center.  Had NO apparent immediate side effects.  The next morning, my wife and I went to the gym for a brief workout.  I only spent about 2 minutes on the recombinant bike before I felt weak.  I took a break and sat down for 10 minutes waiting for my wife to finish her workout.  Upon standing, I felt dizzy and very weak for just a few seconds before I lost consciousness.  

    My wife was able to get me back up immediately and took me to the ER.  Everything was good, with no problems other than the possibility of some very minor dehydration.  

    I have been suffering with substantial OH since with 2 additional Syncopal Episodes over the past week.  I am now working with my Cardiologist to adjust my BP meds, but it is a confusing balance.

    Has anyone experienced similar issues from the COVID Vaccines?


    Exercise is the biggest trigger for dysautonomia and when combined with anything else unusual our bodies don’t handle it well.  Whenever I fall outside of my normal  POTS-friendly routine - whether it is to fly on a plane or to drink alcohol or to get a flu shot - I definitely pause exercise for a few days  and just rest.   I hope you feel better soon.

  15. 12 hours ago, Platypus said:

    Wow thank you all for sharing. It is helpful to have something to show my docs I am not the first. I have colored my hair hundreds of times... from black to red to blonde to bleaching. No special precautions. That said, my heart related symptoms didn't really start until 2013, after a virus.

    Today I did a custom color blend, 3rd time using it. While waiting, my heart rate went to 137. I sat down and got it down a little but it did not fall until I rinsed it out in the shower. My hr then was lower at that point than sitting with it on.

    I definitely have a funky immune system, and have had all kinds of weird reactions but this was so different. 

    Henna is super messy but thats my plan. Definitely don't want to do this again.



    You can check with your doctor, but if you've done something a few times before and didn't have a reaction, it could just be the activity of applying the color lifting arms above the head, etc. that caused the symptoms.   Sometimes when we are in a flare, this happens.

  16. I'd guess a high % of dysautonomia patients have had at least one terrible/scarring experience with an EMT or an ER.  Overall  I have had mixed results with EMTs the 3 or 4 times I dealt with them.  A couple of times they were very helpful, noticed I had low BP and high HR.  A couple times they told me I had anxiety.  One time I was prescribed Xanax when I got to the hospital which I didn't need.   IV saline would have worked

    EMTs and medical professionals need to learn to listen to patients (especially women) evaluate their physical symptoms and not give psych diagnoses that they aren't even qualified to give.  Dysautonomia is often worst in an upright position.  When lying down in an ambulance the symptoms might get better, which is important to also know.

  17. 10 hours ago, Sarah Tee said:

    @yogini, all good points. I am in the dark at the moment as to what is wrong with me ... I am waiting to see a dysautonomia specialist (cardiologist), but if he rules out dysautonomia I don't know what I will do. I am petrified that no specialty will "own" me if I don't fit anywhere, and I'll never get any treatment for my OI/presyncope/fatigue symptoms.

    I can only hope that the dysautonomia specialist will refer me on, not just send me away.

    I feel for you.  It is a long. painful and scary journey.  I really hope the specialist is helpful.  But if not, keep in mind many of us went through several doctors.  Most of us eventually find treatment and improve.  Hang in there.  Let us know how your appointment goes. 

  • Create New...