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My Symptoms

These are a list of my symptoms.

Dizziness
Memory loss
Brain fogginess/Decreased concentration
Nausea
Sensitive hearing – (earache, blocked, vibrating eardrums, flowing noise)
Jaw ache
Sensitive eyesight – (to bright light and an inability to focus properly)
Headaches (head and backs of eyes, bruised, swollen pressure)
Chest pain
Heat rash
Insomnia/disturbed sleep
Loss of appetite
Muscle and joint pain
Shakes – (entire body, but most commonly hands and legs)
Heart pumping – (causes body to rock back and forwards, pulsating in neck)
Heat intolerance – (causes symptoms to increase)
Sweating
Dehydration
Tachycardia
Feeling faint – (speckled lights in vision)
Inability to stand for long time
Tiredness
Lethargy
Poor balance
Muscle Spasms
Blood pooling
Feeling cold – (entre body, but especially exposed area like hands)
Sores – (small sores that blister up on hands and feet)
Small intestine bacterial overgrowth
Indigestion and heart burn
Numbness – (loss of feeling in whole limbs)
Prickling – (static electric sensation in limbs)

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12 Comments
  1. Lucia permalink

    Too BAD DOCTORS don’t know about POTS. I have had about 80% of the above symptoms. Now I have to make a life altering decision: quit my job, as I am unable to work, lose medical insurance and there is no one to take care of me. Had I known that I had POTS, I would have prepared for worse. And all that money I paid to doctors…who were prescribing me anxiety pills. I am 50,by the way. Looking back, I am sure I had it all my life but was able to function somehow,now I can’t get off the bed.

  2. I have POTS and I want to Thank you so much for this list! I can finally gather my thoughts on what symptoms I exactly feel. I’ve had pots for a little over a year but I was just diagnosed and I find it very hard to find support groups. Check out my blog as well Ciarashealingjourney.webs.com

    • Hi Clara, Thanks for the comment. I contribute to a support group here in the UK, we’re on facebook and also have a youtube channel with loads of useful videos. the web address is http://www.ukpotsies.org should you wish to check it out.
      All the best,
      Liam

  3. Jess permalink

    Thanks for posting the list of symptoms. I haven’t been diagnosed yet but my neurologist told me to research it because he’s referring me to a neurologist that specialized on POTS. I’ve been battling most of these symptoms for 6 years now. They started in my first year of high school. I turn 20 this year and we are finally to the point where I might get a diagnosis. I’ve been to 8 different doctors and they could not find anything wrong besides food allergies and a tremor. Some of the doctors even called me a liar. I was in and out of the hospital last summer where the nurses in the ER said I was faking. I’m not faking, I just have no idea how to explain whats going on with my body. Sometimes I just can’t tell people what is going on at all. Its been very frustrating and at one point I got to the point where i thought ok maybe I am faking. Now that i know about POTS and what other people are experiencing I’m finding that I am not alone.

    • That’s great Jess, I am so pleased that you have finally been pointed in the direction of a possible diagnosis. It is incredibly hard when you feel so ill, yet doctors aren’t able to find the answer (I too doubted myself!!). But with a diagnosis and answers, coming to terms with what was going with my body became a much easier task.

      I really hope your POTs neurologist can help answer your questions, give you a diagnosis and begin some form of a treatment plan. I wish you all the best, let me know how you get on.

      Liam

  4. karen permalink

    Hello I have been fighting pots for 2 years along with adrenal issues, both started at the same time. I worked full time up until this may. I could no longer fight the battle of feeling ill everyday at work. I really did not have the option to work anymore I was being hospitalized every six to eight weeks. Due to dehdration and blood pressure. Pots has destroyed my life. I feel like im 100 years old. Now that I am no longer working, I of course can conrtol my physical enviroment better and activities. But really pots controls everything thing I do. People see me and think I look healty, but just standing their talking the roooms closing in and the get darker and darker. Peple dont understand whats happened to me. I dont know whats happened. My life is no longer mine. Your site has given me hope Thank you for sharing, It helps to know other people can deal with pots, and if they can then so can I !

    • Thanks Karen. It’s frightfully hard when life seems to flip upside down, and everything is totally different, but gradually you’ll hopefully find ways to manage and get around some of the hardships of POTs. (I also apologise for the late reply, I don’t know how I missed your message in the wordpress admin panel). I wish you all the best with finding some form of normality! Liam.

  5. I feel you…I have all of those on your list. POTS is a nasty thing to live with.

  6. Mary Lozano permalink

    Having POTS is a nightmare! It has taken my whole quality of life away…… A lot of people don’t understand it and think it is in the mind. Very frustrating. I just want to feel better! đŸ˜¦

    • I know how you feel. It’s very difficult to have an illness that limits the body so much, yet from the outside ‘look normal’. It took some time before doctors found the answer and until that time I began to doubt it myself. It’s certainly not easy, but given time I have learnt my limitations and how to live life within them.

  7. Susushka permalink

    Very informative ! How were you eventually diagnosed?
    Your positive attitude is a great role model to follow.

    • Thanks Susushka. I certainly find staying positive is the best way to deal with this, although at times thats easier said than done!

      I was diagnosed by a doctor at my local hospital who suspected POTS and checked my pulse while laying and then while standing to see the difference between the two. Then he referred me to see Prof Mathias in London who ran autonomic tests including a tilt table test to officially diagnose me with pots. Prof Mathias referred me to Prof Grahame (who diagnosed the EDS III and helped with rheumatology issues) and Prof Aziz, who helped with the EDS III gastro issues.

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