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yogini

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Posts posted by yogini

  1. REgardless of whith form of dyautonomia you have, many of the typical dysautonomia symptoms cause fatigue: low blood pressure, high heart rate, high blood pressure, lack of oxygen to the brain.  The cause of the fatigue would probably depend on your particular etiology.  Many of the medications we take - like beta blockers - also cause fatigue.  I found that once I got on the right meds and got moving my fatigue decreased dramatically.

  2. I always get a flu shot without any POTS flare up.  I do this to avoid getting dehydrated from the flu. 

    This year there was an extra incentive. Once flu season hits, if you get a fever you won't know if it's the flu or COVID.  Everyone in this situation will need a COVID test to sort this out, and there is already a shortage of COVID tests.  It seems like it would be super stressful to have that happen, with POTS also in the mix.  For me, it is a relief to remove the flu from the equation.    

    For those who are considering it, earlier is better because there is expected to be a shortage of flu shots this year.  

     

  3. Hi.  Did you ever figure out the cause of your chest pains?  And did they give you different options of medications you can take to treat them?  I am not a doctor but I would guess there is more than one medicine available and experimenting with the medicines might help you figure out whether the dysautonomia-like symptoms are a side effect of your current medication, or whether you actually have dysautonomia.  Treating dysautonomia is possible, but it can be a very long journey of trial and error and one that you really don't want to go down if you can avoid it by swapping out the chest pain medication. 

    If you don't have access to a tilt table test, you can do a poor man's tilt at home.  (You can google or search the forum of the instructions)

    Did your doctor advise you on whether the chest pain medication could impact your tilt table results?  That is also something to think about before you take the test.

     

  4. I think chronic headaches are an extremely common symptom of dysautonmia.  You can get a headache if your blood pressure is too low or too high and that is the most common cause.  Headaches can also be a side effect of many of the POTS medications.  Of course there can be other co-condtions with dysautnomia which also cause headaches.  So it is a bit hard to determine the cause!  

    When I got or get flares I sometimes had a headache or migraine for 2-3 days in a row ad there was nothing I could do but stay in bed all day. I found my headaches almost totally went away when my other symptoms started to feel better.

  5. 15 hours ago, Lisoosh said:

    Hi all,

     

    Thank you all so much for this website. I’m trying to see if I can get a better understanding of what happened to my dad, to help him as he feels really confused and depressed. My dad is in his 60s, and a couple of years ago when he went skiing at a very high altitude in Utah. There On the top of the mountain, on the top of the mountain, he got a very fast heart rate, and ever since then sometimes his heart rate goes very fast in a way that’s terrifying for him. It might be once a week or so. He’s now on beta blockers so that his heart rate can’t go so fast. He’s been to a lot of cardiologists and no one found anything wrong with him. He’s finding that being very careful and drinking water keeps his heart rate lower. Does this sound like dysautonomia? And can high altitude somehow trigger dysautonomia?

    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.

  6. 19 hours ago, Cara said:

    Hello, I'm new here and stumbled on this forum. 
    I've had issues with getting dizzy every time I stand up since I've been a teenager and it's been getting a lot worse lately (I'm 30 now) where I end up on the floor for a few minutes until I feel okay enough to stand. It's much worse in the summer/when I'm hot. I've had a Primary Care Physician a few years ago tell me that it's orthostatic hypotension and that I should make sure to drink enough water/add salt/maybe wear compression salt, but she told me that based off my symptoms and I think she gave me that diagnosis because my resting BP is relatively low. (usually about 100/60). She didn't test my BP when sitting/standing or anything like that. A friend of mine who is a doctor in another state recently asked me if I've ever done a tilt table test and I said no, what's that? and she said she's surprised I haven't. 
    So I guess my questions are (1) should I? and (2) if yes, how does one go about getting one? I don't have a regular primary care physician right now. my last one sadly left my city and I haven't found a new once since. 

    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! 

  7. On 8/2/2020 at 11:52 AM, WBuffett said:

    Has anyone with PoTS ever taken SSRIs or SNRIs to help reset their autonomic nervous system/improve their PoTS symptoms? If yes, which one(s) did you take? Were there any side effects and what symptoms did it help fix?

    My wife's doctor suggested Cymbalta, but there is not a lot of information out there on if it is of any benefit. She is hesitant to try it due to the horror stories of the side effects and withdrawal symptoms of taking SSRIs/SNRIs. 

    Any feedback would be so appreciated as she is currently bedridden and is desperate for an improvement. Thanks!

    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. 

  8. 13 hours ago, Pistol said:

    @yogini - I am happy to hear that you made it through COVID without a flare!!!! I never felt POTS puts us at an increased risk for COVID related complications but I did expect a flare. Good News!!!!!

    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!  

  9. On 7/27/2020 at 6:23 PM, Hershey said:

    Hi,

    I'm trying to ease my mind or see if anyone has experienced the Coronavirus and has POTS or EDS. I've read the boards, and posts by the doctors, but the last post I saw was from March/Aprilish. This is all still so scary. My doctor won't allow me to go back to teaching in the fall because I live in Florida and it's become a major hotspot. I totally understand where my doctor is coming from, but now I have to find a new job. I work for a small private school and no one chose the option of distance learning. The children also won't be wearing masks so that was another concern. To be honest, I am just scared because if I get this virus really no one can predict the outcome. 

    I appreciate your time and any advice you can offer.

    Thank you,

    Kristin 

    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

     

     

  10. On 6/30/2020 at 11:59 AM, Amyque said:

    I have had pots symptoms now for 3 months, it followed a viral infection and then a cardiologist diagnosed it after a 7 day holter and an echo to rule other things out. 

    Iv gone from an athletic happy young mum to a bed ridden, depressed sad soul, I have two children that depend on me (I’m 30) and I’m letting them down with this illness.

    my symptoms-

    heart rate that jumps to 125 just standing up and continues to rise until I sit down 

    if I don’t sit down once it get past 130/140 I get deep heart pain, SEVERE breathlessness and it takes me hours to get my breath back even once sitting. 

    I get chest pain all day, light headed all day, sleep apnea now (I’m slim with no other health issues) and I gasp through the night with heart rates nearing 200! 

    Also if I try and push myself to stand longer my heart switches from severe tachycardia 160 plus if standing more than 5 mins  to a beat here or there and then when I sit down it’s SEVERE missed skipped slow beats!!! Like it’s going to explode/give out. 

    Im so frightened, that it’s making me bed ridden which is causing severe anxiety/depression. And it’s hard to explain this to people as you look fine. 

    My cardiologist sent me for a pet ct scan as he said sometime pots is due to more serious causes so I’m just waiting for the results as only had that yesterday .

     

    im always breathless which is worse after eating, talking, bathing, heat and ANY movement standing etc. 

    My life has done a 360 and I’m in constant fear, please tell me this gets better. 

    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?

  11. 21 hours ago, Pietro said:

    Hi everybody! First time poster here after finding this forum. I would like to share my story so that I can get some opinions and hopefully some support.

     

    So I've been suffering from what doctors just dismiss as panic disorder and anxiety for several years now. It all started about 8 years ago when I started having a very fast heart rate out of nowhere while watching a movie. The sensation was unlike anything I've felt before. I stood up and felt very dizzy, my heart raced even more. I thought I was about to pass out at any moment.  I ended up going to the hospital where I had an EKG and it was normal, besides the fact that my heart rate was like 130bmp.

     

    Ever since that day, I've never felt "normal" again. I feel like I'm hyper sensitive to adrenaline or something. Every single thing that's supposed to slightly raise your heart rate, sends mine into waaay too high levels. Mild exertion, strong emotions, hot weather, meals, and merely even standing up senda my heart rate easily into 120bmp or above. I've stopped running, which has always been a passion of mine, because every time I do even a little bit of exercise, I feel like I'm gonna pass out. From 2012 to now, I've had countless hospital trips and countless more tests. I've had numerous complete blood exams, EKGs, Echos, 24h Holter, Stress Test, chest x-ray, abdomen ultrasound, thyroid ultrasound etc. Nothing abnormal seems to pop up aside from the constant fast heart. All cardiologists I've seen in these past few years are completely unconcerned about my symptoms and attributed them to anxiety.

     

    The thing is, I don't think it's just anxiety. Rather, I think my anxious feelings are a symptom and not the problem itself. As I said, my symptoms have especific triggers that have nothing to do with stressfull situations (meals, hot weather, mild exertion, standing, etc). I also feel other non-cardiac symptoms like headaches/migraines, fatigue, diffuse muscle aches, mildly dilated pupils, frequent urination, occasional constipation, mild temperatute dysregulation, and others.

     

    This year I started reading into Dysautonomia disorders and it seems to fit soooo much more into my symptoms rather than an anxiety disorder. I've specifically read into POTS and Inappropriate Sinus Tachycardia as the two that most seem to fit my symptoms. My only doubt about POTS is that my heart rate is high even when I'm lying down and not only when I stand up. My heart while calmly lying down can range between 85-100, where most normal people are between 60-70. And like I said, every single thing raíses my heart rate, even just shifting positions in my bed.

     

    Needless to say, all these symptoms have taken a big toll on my well being. I don't feel healthy at all. I feel very frail, besides being relatively young (27y). I feel like these daily symptoms have been robbing me of my life and the various doctors I've seen during these years just blush me off as an anxious individual and prescribe me benzos and SSRI's, which don't help my symptoms much. I've recently went to a neurologist and got a Tilt Table Test and Brain MRI, in hopes of finding some answers.

     

    In the meanwhile, I live my life being scared of my symptoms. The cardiac symptoms in particular are very distressing and always gets me worried about having some cardiovascular events because of the constant high heart rate and palpitations.

     

    So that's pretty much my story. Anyone on a similar boat and with some insight that could be offered?

    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.

  12.  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).  

  13. On 7/24/2020 at 9:53 PM, WBuffett said:

    Does anyone currently have (or know of someone) who has severe POTS and can’t get out of bed or walk?

    My wife’s condition has progressed over 10 years to the point where she cannot sit or standup for more than 20 seconds without presyncope. It is to the point where she is living on a mattress 24 hours per day.

    She is currently talking 5 mg of Midodrine 3x/per day but it doesn’t seem to do much. She tried Mestinon and Fludrocortisone but she couldn’t tolerate either drug. She has also tried fluids and salt, stockings, Spanx, abdominal binder and raising the head of the bed. None of this has helped.

    She was hospitalized last fall for a month, doctors were flabbergasted by her condition. Doctors prescribed bed exercises for de-conditioning and the Midodrine, but it hasn’t done anything to improve her condition in over seven months. In fact, her condition continues to worsen.

    Has anyone been in this position and been able to improve. If yes, what did you do or take?

    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.

  14. 4 hours ago, Lisa C said:

    I’m taking Midodrine 10 mg 3xs a day and it has really worked for some POTS symptoms. I can stand longer without symptoms. I really want to return to work but I feel like I have anxiety and with the COVID 19 being a teacher. I wanted to try propanol for anxiety. I know low dose propanol is used for POTS too. My psychiatrist thought it might be an option too since I have extreme adverse side effects to many SSRI I have tried. Need help Has anyone had success with both? 
     

    Thank you 😊 

    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.  

  15. On 6/9/2020 at 5:56 AM, Chuske said:

    What do people find more effective the speed or the rhythm? I think breathing using the diaphragm is a given. 

    I find the rate is more important than being square. I find a full in-out breath using diaphragm over 10 secs to be about right.  The rhythm can then either be 3-7 4-6 or 5-5 ( seconds for in then out ) but I find slow in breath and short outbreaths less effective so I don't do those.

    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.

  16. 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. 

     

  17. 13 hours ago, green said:

    Hello katyroq,

    I don't know why you would have a paradoxical reaction to square breathing. But, I used to practice Zen meditation at a local Sangha and a big part of the Soto tradition is following the breath while you meditate. I quit practicing Zen because I was getting agitated by the way my breathing would deepen and I would become uncomfortable, light-headed, and get red in the face.

    When I practice square breathing today I am still noticing that it is something uncomfortable. It is not as a natural feeling as I would like it to be. Indeed, I am using a slightly modified system of 1:2 (twice as long breathing out as breathing in). So, perhaps I will never be able to totally square breathe.

    But something has changed between today and when I was practicing Zen: I had surgery on my sinuses to increase clearance including correcting a deviated septum.

     

    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

  18. On 5/23/2020 at 4:12 PM, green said:

    Hello All,

    Recently I learned about square breathing, which involves matching inhalation time to exhalation time. I was advised to use square breathing for anxiety.

    I have had success at temporarily reducing my POTS symptoms by using square breathing. What I've found is that if I square breath for two - five minutes, then the weakness in my limbs, dizziness, and inability to focus, improves for up to an hour.

    This is just a very basic thing anyone can try without a doctor and it does not cost any money. 

    In general breathing exercises help to calm your system and stabilize your vitals including HR and BP.  It is helpful to do them every day.  There are a few simple common ones included alternate nostril breathing.

  19. On 5/24/2020 at 1:38 PM, TCP said:

    I was diagnosed late in life, five years ago. I saw a really good specialist for a few years and he was really interested in exploring everything about POTS. He left for a post overseas and his replacement was lovely, too, but only stayed about a year. Then another specialist came on the scene and he seemed less tuned into POTS. My breathing was getting worse and so he decided to send me for some tests. The only thing that showed up were things I already knew that I had. I had a follow-up telephone conversation with a nurse and she got back to me later and the doctor wanted to sign me off. The main reason for this is that they can't change my meds as I have tried most of them and I am currently on a low dose of Nebivolol so feel that they can do little more for me. This is all despite my telling her that my symptoms of dizziness, breathlessness and blackouts have worsened. I kind of feel abandoned now. My GPs know very little about POTS and if I need to get re-referred it's going to be a six month wait to see someone. 

    Has anyone else had this happen to them? 

    Hi, our healthcare system is different in the US.  It's unusual to have a doctor end the relationship but we are used to having a doctor that can't help.  It is frustrating and heartbreaking and I am sorry you are dealing with this.   You will need someone to work with in the long run, so you may want to think about joining the waiting list for the new doctor if that is the best way of finding a new specialist. 

  20. On 5/20/2020 at 7:18 AM, Chuske said:

    I've been diagnosed with POTS (via tilt) and ME for a few years now and it was fairly well managed I was a bit limited in walking, I don't have EDS and prob not hyper-adrengeric.  Then 5 weeks ago it got a lot worse, I started having worse anxiety and getting more fatigued so much so I found it hard to sit up for evening meal and my stomach symptoms of trapped gas were also worse and seemed to be in turn affecting my POTS symptoms and giving me chest pains that were relieved totally if I burped.

    Then 3 weeks ago shortly after dinner I had a sudden hyper feeling like I would imagine if I'd had lots of caffeine (but I never have any) and had a brief spell of high heart rate and sweating nd then my legs started shaking and spasming.  At the time I assumed it was a panic attack.  After that was mostly bedbound with short trips downstairs and was slowly improving until monday when I had the hyper feeling again on waking and none of my usual anxiety interventions would help.  Then after lunch I had another high heart rate spell and called for medical help, para-medics were sent and my ECG/EKG was fine and blood sugar normal and BP 145/80 (it was 115/75 after they left on my home monitor so I suspect it was up due to the stress of them being here) and normal blood sugar.  They didn't seem concerned about the hyper feeling.  I felt hyper all day until my wife gave me a very deep massage and then I had the legs spasm/shake again.

    Yesterday I was alright but today had another short spell of high heart-rate from sleep (meaning I only had 4 hours).  I called my GP but her attitude was that she couldn't help me unless I could get to the surgery as they only do home visits for the elderly.   She felt it was likely all POTS + anxiety and should up my Ivabridine and come in if things didn't improve, even though I told her I can't get downstairs.

    So what to do?

    How to improve myself and get better without further medical support or so I can get more tests?  I've had a lot of anxiety recently, but how to manage my POTS, sleep and anxiety around these occaisional hyper feeling attacks (these have only happened very rarely in the past and not all day like monday)?  I need to build up sitting so I can at least cope with wheelchair rides and be able to manage getting downstairs.

    Feeling really lost as rarely been this bad.  Any advice?

    Has anyone else had the hyper-wired feeling before a heart rate increasse due to their POTS?

     

     

    The symptoms you are mentioning sound very typical.  I noticed they occurred after eating.  Are there certain foods that are triggering this?  Are you eating a large amount of food?  I also have trapped gas and have never figured out how to totally relieve that

  21. 9 hours ago, issie said:

    So many people don't recognize that MCAS is a huge issue and can trigger a POTS response. I didn't know it until I started working on my own MCAS.   

    I think most people who frequent this board know that a subset of dysautonomia patients have MCAS.  I agree it is important for new patients to read about MCAS and think about whether it applies to them, and get tested if it is a possibility.   But probably hard for users on this board to diagnose other members.  Chuske also didn't mention the allergic symptoms which I understood were associated with MCAS.

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