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POTS and anxiety?

Posted , 16 users are following.

amy89817
amy89817

Hello,

I've been diagnosed with Hyperadrenergic Postural Orthostatic Tachycardia Syndrome in the last year, and have suffered significant anxiety and agoraphobia ever since my symptoms became much worse.

I was wondering if anyone else gets this?

I sometimes can't tell what is POTS and what is anxiety, because of the cross over of symptoms. I thought I was having a panic attack because I was tachycardic, sweaty, had heart palpitations, dizziness, clamminess and felt like I needed (or was going to) hyperventilate, but when I looked at my legs, I noticed that my feet/legs were blue up until the knee, and on moving around/sitting down the anxiety/panick attack symptoms go.

I know that the symptoms are similar (and that's why I was just diagnosed with anxiety for ages before having appropriate dysautonomia testing), but I haven't heard of anyone with POTS suffering with anxiety as badly as I do.

Sorry it's a bit of a ramble.

Any advice is much appreciated! smile 

1 like, 19 replies

19 Replies

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  • emma22878
    emma22878 amy89817

    Posted

    Hi Amy,

    I have POTS and I suffer from anxiety big time from it. Especially when i have had symptoms flare up and I am on my own. I live with a flatmate and she is very often away and i get anxiety a lot more when I am alone. When an attack happens even though it is always horrible, you feel so much better if you have somebody with you.

     How do you deal with it? I have always avoided taking anxiety drugs as i feel it would be a slippery slope....

    Emma

    • amy89817
      amy89817 emma22878

      Posted

      Hi Emma, 

      I think you're the first person I've found with POTS! I think my anxiety started because before I was told I had POTS, I was misdiagnosed with anxiety. POTS symptoms seem similar sometimes and I was constantly told it was 'just anxiety' so that's what I believed! I moved home after I was diagnosed as I was very unwell, but am supposed to be moving to university in three weeks time. 

      Yes, I find that having someone there distracts me, so I calm down much quicker/ don't panic as much which would exacerbate my POTS symptoms. 

      Hypnotherapy has actually helped me a great deal. I was severely agoraphobic before, but now manage to go out much more. I'm trying yoga, and relaxation techniques too. 

      The dr tried me on citalopram and sertraline before they knew it was POTS, and I ended up having serotonin syndrome with both medications (near fatal drug reaction). That experience made my anxiety twice as bad and therefore I won't try anymore. Before the medications, I was slightly agoraphobic, but not generally anxious, now I'm scared to be on my own! Meds don't treat the root cause either, so I'm feeling happier with CBT, hypnotherapy, relaxation/breathing techniques etc. How are you coping? 

      Amy

    • pam_87693
      pam_87693 emma22878

      Posted

      Hi I am Pam from the FB group British Sjogren's. I was born with EDSHT are you double jointed. This wasn't considered anything to worry about and still isn't unless you have problems. Anxiety is common in the EDS groups especially as we inherit a slight imperfection of the connective tissue. If you feel POTS try and drink a glass of water before you get up, that might help, if your BP is low as mine has always been, it might help to eat a few salt things. 
    • steph82088
      steph82088 amy89817

      Posted

      Hey Amy, my doctor gave me bupropion and 5htp and I thing I may have serotonin syndrome. What happened when you got it?
  • pkt888
    pkt888 amy89817

    Posted

    Hello Amy, Im 58 years old and have been passing out off and on since i was about 14 and had different tests over the year before pots was thought of  and the conclusion was i was one of those people that just faints. What a load of rubbish that was, i always knew something had to be happening to make me faint. My symptoms were sometimes if i went to get out of bed i felt faint and just ill sometimes i had to crawl on the floor because i couldnt stand up, ive felt dizzy outside and  fainted at a train station 2 years ago. If i felt dizzy i always have a few seconds to lie down and sometimes it would pass but if your out thats a bit hard to do. Ive gone a couple of years in the past with no symptoms but they always come back.

    Last year i had a tilt test and told i had pots syndrome, they said my heart would beat really fast and the blood would pool in my legs away from my head. They tried me on  Ivabradine to slow my heart but it didnt make a lot of difference. At the beginning of this year i started to get anxiety really bad, if i went to town i would start panicking and had to get back to my car as soon as possible, i would sweat and keep thinking i would faint, i saw the Dr and she suggested medication but said you could get addicted but i didnt bother. I read on the internet about Bachs rescue remedy, you can get it in a lot of places and i thought its worth a try,i went shopping and started to panic and put about 4 droplets in my mouth and it calmed me right down, i couldnt believe it, i would top up through the day and have one by my bed at night to take before i got up, it really helped me. It helped really a lot with my anxiety but i still was getting fast heart rate so i looked in to cayenne powder and i can honestly say it has changed my life. I started off with 50.000 heat units three times a day and now im on 90.000hu.  I use about a quarter of a teaspoon in a small amount of hottish/warm water and quickly drink it down follwed by cold water, you feel the heat going down and your mouth is really hot but its not unbearable it opens the veins and goes to your heart and regulates the heart beat and curcullation among other things.. I can only speak for myself but i wish i had found this years ago as i feel as if ive wasted a lot of years by not being able to go places in case i faint. I still have my rescue remedy on me at all times bit can honestly say i feel fine and get out of bed feeling normal. If you just tried the rescue remedy for your anxiety it wont harm you in any way, If you try cayenne its better in powder than capsules. Hope one of them help you. I am on no medication now from the Dr and feel ok.

    • pam_87693
      pam_87693 pkt888

      Posted

      Hi pkt888 I am Pam from the FB group British Sjogren's. POTS is now considered to be part of Sjogren's Syndrome and is being talked about at the BSSA conference in October. I don't know whether you know anything about Sjogren's Syndrome. It is an autoimmune disease that attacks the moisture producing glands and is a connective tissue disease. I was born with EDSHT this is a slight abnormality of the connective tissue. It was until recently though to not be worrying but if you get other problems it becomes Hypermobility syndrome. With the sicca symptoms of Sjogren's our mouths, intestines, eyes etc are all dry. I find your post on cayenne pepper most interesting but unless it came in a capsule I don't think many of us with Sjogren's and POTS could cope with cayenne pepper as anything peppery like chilli peppers drives us mad! I have increased my salt intake and with Sjogren's we all drink gallons anyway, it would be most interesting to hear from you. Many thanks x😀
    • pkt888
      pkt888 pam_87693

      Posted

      Hello Pam, sorry for the very long delay in replying I have not been to the site for ages. Since my last post over a year ago I'm glad and surprised to say I have only had a slight funny turn as I call it when I felt a bit dizzy getting out if bed but I did have a cold and earache. I even managed to go abroad last june which really panicked me thinking about it as I thought I might faint queing up if I had to stand to long but I was fine, I had my rescue remedy with me and took Cayenne before I left. If you could take Cayenne pepper and not the capsules its best, I swear by it its good for so much, for me it regulates my heart beat, I only take a very small amount not even a quarter of a teaspoon with a small amount of warm water just enough to cover the bottom of a cup then a whole glass of cold water, I must admit I do look like a bulldog chewing a wasp when I drink it but I would never be without it now it has given me back my life, good luck to you.
  • lyn88241
    lyn88241 amy89817

    Posted

    Hi Amy

    Just wondered how.the pots/anxiety is going (hopefully it is going or gone ? !) for you?

    You're story sounds similar to mine x

  • pam_87693
    pam_87693 amy89817

    Posted

    Hi I am Pam from British Sjogren's a FB group for folk in the UK who have Sjogren's and POTS. The sweating and anxiety you talk about could be POTS related. The first thing is, what is your BP if it's low like mine, are you double jointed? The problem is at the moment only 10% of GPs know about Hypermobility and very few Consultants know about POTS. I am 68 and I was born Hypermobile, then came the POTS and finally Sjogren's in that order. However the anxiety I can remember from a child. I just couldn't understand why I felt so 'odd' as being a bendy person obviously my brain was being stressed even then. If you have dry problems, I now realise I was dry in my teens those are the sicca symptoms of Sjogren's. If you have these you are welcome to join my FB group which is run on behalf of the BSSA by its members and is for anyone living in the UK. If you have dry issues you need to tell your rheumatologist as Sjogren's can be reversed in the early stages by medication. 
  • pam_87693
    pam_87693 amy89817

    Posted

    Hi I think POTS ultimately gives you disautomnia. The nervous system is comprised of 2 systems the Sympathetic and the Parasympathetic. The Sympathetic is the flight and  is the fight and flight, the Parasympathetic is the rest and digest. When these get out of balance you have disautomnia. So you literally have a body out of balance. This is why you have anxiety symptoms even if you have nothing to be frightened of. This is why someone with a connective disorder like EDSH where you are born with a slight imperfection of your connective tissue, your joints are bendy, or your skin is slightly more stretchy than normal, can lead to POTS. That is when you feel faint when your body alters position. If that becomes worse you may have Hypermobility syndrome. A syndrome is a collection of symptoms, whereas a disease has a clear path, which is easily recognised and much easier to treat. 
    • elaine33371
      elaine33371 pam_87693

      Posted

      Hi pam

      I am 56 years old, and i was recently diagnosed with, VasalVagil Syncope, my bp is always low and my heart slows considerably when standing.  Without a doubt my nervous system or body whichever, is out of balance, i always use to liken my anxiety to PMT symtpoms, but it became constant so felt it couldnt be hormonal, and ive been managing my symptoms myself since i was 21, without knowing what was wrong, although i am pretty sure i was born with my condition, first symptoms started aged 18 months with convulsions, which, sometimes i still have, but at 21 things seemed to come to a head with it, and for the first time showed itself in its severe form, ive developed CFS, an erratic blood sugar, and very slow dijestion, i drink as much water during the day as i can, and i am liberal with my salt intake, and i eat little and often,  i feel fitter eating  a combination of protien/ fats, small unrefined carbs, very little alcohol, no caffinated drinks, gentle exercise, and i get up early to avoid deconditioning.  After having major surgery in December 2014, my symptoms became very severe and it took me 7 months to recover from that episode which has been the longest time ever, it really scared me how poorly i felt during this time, like i was going to die.  I decided then, i had to dig deeper with gps to help find out what was wrong with me, i finally found a gp that ive been looking for since i was 21, thats 35 long incredibly hard years, she fought me on my symptoms for a long time, but then i seemed to make a very small break through with her, and she sent me to see a cardiologist who confirmed the diagnoses after a tilt table test.

      I have finished the menopause, but, i think its been since pre menopause my symptoms became severe as ive always had problems during hormonal times with my health, and each time i took a change in my periods i took a dip in my health,  infact if has definately affected my monthly cycle, as i learnt  its not like most womens, plus  i was in a stand up job retail, and i think i pushed myself to far with it, and things got worse, i have been left work now 4 years, and whilst i am so much better, i am not as strong physically as i use to be, i have to be so much more careful on controlling it, probs due to age i dont know!

      You are spot on with what you say about the dysautonomia condition, and strangely enough my daughter has hypermobility, i dont, she also has crohns, and i can pick autonomic dysfunction in her also. I would like to follow you on facebook, how do i do that? thankyou!

    • pam_87693
      pam_87693 elaine33371

      Posted

      Hi Elaine how are you I'm now officially diagnosed with Lupus Sjögrens,Hypothyriod, Crohn's POTS, Fibromylalgia and EDS.

  • pam_87693
    pam_87693 amy89817

    Posted

    Hi Amy I have been referred to a cardiologist, at long last I have a neurology appointment from Feb referral in August, and a referral to a POTS specialist so hopefully I will have knowledge of which POTS by the end of this year God willing it will be the last bit of the jigsaw of my life of pain which prevented me from my childhood dream of becoming a doctor. I can certainly agree with every symptoms you describe except the palpitations but I can hear my pulse when I finally lie down as the raging tinnitus which is not your hearing, it's your brain working! I have hyperhidrosis which isn't underarm sweating, I hardly ever had that, my head just drips when I do anything be it physical or cerebral, I also find I now write in a dyslexic fashion which I never did before. I have never been brilliant at spelling but thought it was my lack of schooling, I lost 4.5 years of school due to being so unwell. When I went to Cambridge we did a week of IQ tests. The tutors were astonished at my very high IQ but even more so at my poor spelling. My sons all have a degree of Hypermobility Beighton 4, 9 like I was, 4 interesting the eldest is very mildly dyslexic, I didn't realise this but he too can't remember people's names, medical names yes easily like be, he also has jumping writing as do I and son 2 who was very dyslexic he didn't read until he was 9 but with help he went to uni son 3 isn't dyslexic but has IBS. I think I and they all have degrees of anxiety too. Strangely my legs are white totally white, I do have numbness and tingling from the knee down in both legs and they feel like blocks of ice, I also go septic very easily which is EDSHT. To complicate things further I inherited Psoriasis from my mother, this gave me PCOS but as I have always preferred A veggie diet and hate fat also I have never been able to tolerate alcohol I am not diabetic but I did have preeclampsia with my first son who sadly died age 11 weeks SIDS
  • pam_87693
    pam_87693 amy89817

    Posted

    Hi Amy I am sure your anxiety started long before POTS. If you were born Hypermobile then because you have a slight imperfection of your connective tissue your body was born out of balance. If you have a connective tissue disease like Sjogren's that too can put your body out of balance. I was born with one then acquired the other. I hope I will find out soon why! In the mean time you will feel anxious because what ever gave you POTS look up POTS UK your body is out of balance, this includes your brain. Your not clinically anxious or depressed unless you have been diagnosed with a psychiatric problem, we all seem to be told we're anxious because until very recently the medical profession didn't know about EDS being the same as Hypermobility syndrome. This oversight applies to most doctors trained until 2013 so please download all the information you can to your GP, Dentist and any consultant you see! 
  • bianca56630
    bianca56630 amy89817

    Posted

    Hi amy,

    Im bianca 27 and recently got diagnosed with POTS and suffering with anxiety too, i knew i had anxiety disorder from a long time but im being indenial about it cause im scared of what people might think of me, it was the most horrible feeling whenever im having my attacks, coz im depressed and stressed for some reason that i dont really know. I snap very easy, i scream and  the rest. and having a baby is a very difficult challenge when attacks become present, Ive done series of test and that and my doctor gave me a maintenance called cardicor, i dont really know what is it for, but i call it my safety pill, coz for me whenever i take it i know im safe... i also find that opening to others about my illness helps me alot, it soothes me that people understand what im going through, and for me understanding rather than giving me an advice is very important, it wasnt easy to pull yourself out of that darkhole. it takes a lot of courage...i put myself to sort of things instead i joined pole dancing class forums and etc.. there will always be a bad and good days but as long as you have the right people around you, you will be fine im being optimistic (well i try) that oneday ill be able to get rid of them  smile i know will take awhile but i will get there smile... stay srong and positive xxx

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