please help

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Hey guys an gals

I was looking for real life people to tell me how pots symptoms started and the symptoms please

I have been having a few issues since a surgery on appendix

I was recovering well but caught a infection this slowed me down one day I woke up with classic heart attack symptoms so after going hospital they did echo and stress test which was abnormal so I had angiogram which was clear so all good yet I never felt better I went to the doctor and said my heart seems different like when I stand up it feels like it is racing and a few times it knocked me off my feet they said see how it goes well I brought a pulse oxineter to have a look and resting heart rate was good between 60-100 sometimes it was 50 but when I stood up and walked it shoots up to as high as 150 everytime everytime I had a scary moment in October I went for a bath when I got out I fainted my heart was at 180 and I was rushed to hospital with suspected heart attack my tropins actually raised but after 3 days I was released only one doctor listened to me about the walking heart rate and when he saw it gave me a beta blockers immediately but it doesn't really help no doctor will help because my resting vitals are so good but as the days go by I get weaker and more scared on research pots popped up so hoping I can get some advice please

Also if any of you get other strange sensations in chests and that because I have been getting alot of different sensations in chest and its all new and honestly I'm petrified that I'm going to drop dead

Thank you in advance x

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14 Replies

  • Posted

    Hi darling have you been seen in neurology? If you live in the UK the best place to go is UCHL in Queens Square London. Ask you GP for an urgent referral. If you feel faint don't worry they will send a hospital car to collect you. They are the top neurology hospital and you should go there. I was under a delightful lady Consultant Neurologist Dr. Hagen. She was very kind the hospital is very clean excellent choice of food. 
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    • Posted

      Thank you so much for replying

      My doctors dont seem to be helping they scare the life outta me by saying its serious and then nothing I have been waiting for a emergency halter monitor for a month still no go

      I seriously am not getting better I noticed Las night that my legs turn purple when I stand for more than a few min as well

      Tbh the dizziness and that I can probably Learn to live with but the chest pain and weird feelings are killing me lol

      I will get on to my doctor again

      Thank you

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  • Posted

    You certainly sound absolutely the obvious POTS type patient so please do get help ASAP I know I've been there and you really do need help. Don't bother with anything look up University College Hospital Autonomic unit in Queens square get there phone number. Then ask to speak to your GP tell him you have POTS and ask him to ring the phone number or fax them! 
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  • Posted

    Hello Samantha, I am no expert- just a guy with similar problems-autonomic dysfunction seems to be random and irratic and can be different for everyone.

    I have been mis-firing for several years now with feints and pains and days when I am convinced Im dying. .But... im still here... and get by. Diagnosis took 3 years. Midodrine helps stabilise things but its not perfect. I was previously very fit cycling up to 100 miles per week and  it came on for no reason that anyone has yet defined.I am now  having councilling for Health Anxiety to curb my obvious concerns-

    I hope it helps you to know that you are not alone.Theres loads to read on the web.

    Rob

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  • Posted

    Hi again Samantha,

    Dont know why the link was removed-just a post by someone who told a good story.

    To answer your question more specifically-yes chest pain has been a feature-it feels like a belt pulled tight around my chest under my armpits. It happens when I stand still for more than a few minutes.

    Rob

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    • Posted

      Thank you rob for replying I was the same very active I was overweight but my fitness was top now I'm under weight I lost 9 stone and my muscles have wasted completely so much so doctors thought I was a drug taking anorexic that actually made me cry lol I think I have serious anxiety now it came outta the blue sometimes I can be sitting all calm an a thought feeling washes over me that I'm dying its the strangest thing ever scares me no end I hope to have this sorted soon because honestly my head needs a break

      Thank you again hope you feel better soon x

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    • Posted

      Sorry also with the chest pain etc I get a pain in centre like someone is pushing something in-between my breasts and I get a multitude of sensations I've had buzzing and chilled feelings waves and electric shocks just to name a few the worse one is when I feel like my heart has stopped and often will stop I hate this one no end lol
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  • Posted

    Samatha,

    It has been a very difficult thing to come to terms with for me, the autonomic system is after all the very meeting point between mind and body. For me the anxiety lay in not knowing whether my symptoms were physical or mental. Now with a firm diagnosis it makes sense to deal with the anxiety that has developed along side (the neurologists idea after I cried bucketsfull in front of her). I guess what im trying to gently say is that we have to learn to live with this crap hand. I have learned recently that health anxiety can produce very similar symptoms to the actual condition and obviously exacerbate them. Im not there yet but maybe by adjusting expectations I can come to terms with it. elleandtheautognome is a page by someone who has.

    best wishes.rob

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    • Posted

      Thank you so much for taking the time to help me

      I feel very lost at the moment I have had three days of hell constantly thinking and feeling that I am about to just die I can't seem to get a handle on it it is very strong I keep trying to get someone to listen to help I keep saying that even if it was just anxiety it wouldn't effect my heart rate everytime I stand its a battle in scared I'm losing at the min I hope that I will be able to come on in a few months and say I'm getting there but at the min I don't see it happening

      Thank you again all the best x

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    • Posted

      I know my symptoms are physical because I have abnormal reading on lots of tests - it's just that where I am now is a very poorly resourced.  I am in Scotland now but wish so much that I was back in London where I lived for 30 years from 25 to 55 years of age. Services back here where I was born are shockingly poor for most areas of physical and mental health.  I do suffer from mental health issues - depression and anxiety - and I believe this gets in the way of me having my physical symptoms taken seriously.  

      Luckily I have a new GP who is willing to listen and I hope things are about to get better.

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  • Posted

    Hello again Samantha,

    It pains me to feel your distress. I have been there and Im sure many have also. 

    My only advice is - dont be afraid to ask for help. If this horrible condition had a name that people recognised they would be out there fundraising and dishing sympathy in buckets full. But the fact is this condition is a mystery to most proffessionals let alone our family and freinds. And yet it affects every organ and therefore every aspect of our life, mentally and physically.

    But people are out there who are paid to listen, talking helps even if its just venting at the crapness of it all. Use them if thats all the system will provide. You dont even need to be referred you can self refer on line.

    Rob

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    • Posted

      Thankyou rob you are very kind to keep replying to me

      I really appreciate your help and hope that I can be as positive one day I will look up the self refer although my doctor has said he will try to get a emergency appointment as my heart rate is now hitting 200 with frequent dizziness and shortness of breath I can only hope that he will help

      I will try and keep you updated feel free to message me private if you ever need to talk

      Thank you again x

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  • Posted

    Hi Samantha, it's pretty common actually for young women to get POTS and not a lot of doctors know how to treat this condition appropriately.  Your POTS may have been a result of blood loss during your surgery.  Mine started after childbirth but only began about 5 months after when I had lost all of the water weight from pregnancy and stopped breastfeeding, so it baffled everyone for a while.  Like Rob said, the medications used to treat POTS (Florinef and Midodrine typically) are not 100% effective for most patients but they work for most people to regain a semi-normal level of functioning, and semi-normal is better than nothing!smile  Your POTS may be a causative factor of physiological symptoms of anxiety.  With a form of POTS called neurocardiogenic syncope, when you stand up and your blood pressure drops your body releases a ton of fight or flight hormones in an attempt to raise your heart rate which is supposed to raise your blood pressure back to normal.  Our baroreceptors don't always listen to the message those hormones are sending but the hormones keep flooding to get the BP up regardless of whether they are effective in doing so or not.  All of those fight or flight hormones produce the same physiologic symtoms as an anxiety attack, not to mention worrying you're going to drop dead any minute can be *slightly* anxiety provoking! wink  Call your doctor and request the medications for POTS, hopefully they will provide you with some relief and you will see a reduction in your anxiety symptoms once you can stand up and walk around with a little more ease again.  
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    • Posted

      Thanks for that bit of information Vanessa.  I haven't been seen at any hospital yet and anxiety is a real problem for me.  I'm really aware of the connection when my tachycardia is bad - especially if it wakes me up at night but hadn't made the connection during waking hours.  It helps to have that bit of information!
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