Do I have POTS syndrome?

Hi, I would welcome your opinion I'm new here.

I'm 51 now (male)and my symptoms started after a hectic day gardening 4 years ago.

After a few hours digging out a tree root I sat with a cup of tea. When I stood back up I experienced the following.

Spots in my eyes, hearing loss (like someone was clasping their hands over my ears on and off) , pressure in my eyes, pain in my neck shoulders and head. These things got worse the more I walked. But went when I sat down. One day I was having to sit for 4 hours before I returned to normal. After these 'attacks' i'd be very tired.

I now have this whenever I exhort myself sometimes it lasts for 10 mins others maybe an hour?

I had a reveal fitted it revealed my heart raced at these times but nothing more. I had a tilt table test and they gave me a drug to dilate my veins but I really needed to walk when they raised the table because I only experienced POTS as I walked across the car park on my way home after being told all was normal .

I now experience face flushes night sweats IBSd and c and just wonder if I have POTS? I so need to put a label on it and would love a diagnosis but ive been discharged from cardio My GP then sent me for hormonal tests which drew a blank. I feel abandoned now and just have to endure this?

your thoughts please.

Kind regards

8 Replies

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  • Definitely sounds like some sort of Orthostatic Intolerance, like PoTS. Check out the STARs and/or PoTs websites, really informative on there. Initially I was referred to cardiology and like you had a reveal fitted which showed high heart rate. My cardiologist referred me to a neurologist at an autonomic unit where I then underwent a barrage of tests before a diagnosis of "tendency for PoTS". Similar to you I was more aware of symptoms after walking, quite often the "stop/start" of queues for example, rather than immediately on standing. Ask for the referral from your GP or cardiologist, definitely needs investigating further. Good luck!

  • Thank you. Really feel like I'm not believed by anyone because I look absolutely fine of course. Thanks for replying

  • That's precisely what I was reading about last night, how we can look perfectly fine, when inside you feel seriously naff, it's an invisible illness. There's an American site called Dinet, really good YouTube piece on it called "Changes, Living with PoTS". You're not alone, there are thousands of people struggling with it who understand and you just need to find a Dr who knows the condition. STARS have a list of specialists if you check with them for your area.

  • Thank you I'll look through it this evening

  • I'm absolutely the same as you DDave. I've had M.E since I was 18 so always felt exhausted but started noticing those symptoms when getting up from kneeling during gardening. That was about ten years ago. I've had a tilt table test & my cardiologist diagnosed PoTS. I take a low dose betablocker to stop my heart hammering away. I now get up slowly, try to stay hydrated & eat small portions more often to keep my blood sugars regulated. I hope you find an understanding GP or specialist who can help you out. All the best

  • Thank you . Do you have the hearing loss as well? I forgot to mention in the winter if I sit for half hour my feet go very cold I'm sure it's part of my problem . Thanks for your opinion

  • I have quite bad tinnitus and it gets worse when I feel get up quickly or hear a loud noise. Cold extremities with painful tingling... my consultant said that Reynauds syndrome can be part of the whole dysautonomic problem. I was prescribed various medicines but the side effects for me were worse than the condition itself. Worth looking into though as we are all different when it comes to treatment.

  • Thanks again you've enlightened me . I've had a lot of tests with very little results it's been discouraging and I've virtually given up with my GPs . Some days I can do a lot and I'm fine but other days are quite different. Driving in the car a certainly distanc always triggered an attack but it was ok on really short runs or long runs but some where in the middle caused an attack when I stood up out of the car. But then suddenly this stopped. Also raising my arms or tilting my head back to look up can cause me problems .