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Sarah JParticipant
That is very kind, thank you ๐ I am not often in that direction though. I get stiffness in my neck but haven’t had it in the shoulders. Wow that is interesting, I didn’t even know that existed, I may have to give that a try.
Keep in contact and let me know how you get on with the cardiologist, wishing you lots of luck.
Sarah
Sarah JParticipantHi Anna,
Yes I can imagine, it’s a shame so many people have to go through it. That’s terrible the way you have been treated ๐
I don’t blame you wanting to avoid London, I wish I had done the same, I would rather travel further to have to go into London as it’s just so stressful. Where about’s are you based if you don’t mind me asking? I am in Colchester, Essex.I haven’t read Dr Diana’s book as yet, but I will download it soon ๐ Yes I think all doctors should give it a read!
Thank you so much, that’s very kind, I just couldn’t sit around and accept a condition that I really didn’t feel was what I had.
Sarah xx
Sarah JParticipantHi Anna,
It is a shame but I was desperate to know what was going on and wanted to prove the doctors wrong. I saw a new GP the other day as I needed another sickness note, she put ‘POTS’ on it and said “now what does POTS stand for?” It’s one thing doctors not knowing much about it but when they haven’t even heard of it before you just think what a great start! Gosh Anna, I am so sorry to hear about your son that’s so sad.
Well your standing heart rate certainly sounds like it could be POTS. I have a app called Heart rate which is actually really quite accurate, you just place your finger over your camera lens and it monitors it for you. I didn’t think it would work at first but it matched with my blood pressure machine. That way you can see the difference between your resting HR and standing HR.
That has been going on a very long time for you, it will be a relief to finally have a proper diagnosis and to hopefully find a treatment to suit you. I asked for a referral to Dr Tushar Salukhe in London as he was on the POTS UK website, I was in the room with him for all of about 5 mins. Because I already had a diagnosis and I was already doing lots of what I was meant to be doing already, he seemed all arsey because I knew so much about it. But if it wasn’t for me and my research I would still be stuck with thinking I had CFS. He put me on medication to try and that was it, was a very long and stressful day just for a 5 minute consultation, but then that’s the NHS for you.
Sarah ๐
Sarah JParticipantHi Anna,
I am sorry to hear you are also suffering from bad headaches. I hear many people are wrongly diagnosed with things like ME or CFS instead of POTS. They said for ages I had CFS, turned out it wasn’t true. It was only through my own research that I found out what POTS was and went private to go get tested for it and for sure it was POTS.
Unfortunately the GPs can be awful, even now I am diagnosed my GP isn’t understanding. I know head and neck pain is common in POTS but I don’t think to the extent we have, but I am still new to it all so I am not totally sure. I have only been diagnosed for about 9 weeks but been unwell for about 19 months. Dr’s can get really arsey when you research stuff yourself and try to tell them their job, I was telling them for 6 months to test me for POTS, but they said there was no way it was that. Hence why I paid for a private test, so glad I did. I am now back on NHS though as don’t want to keep paying out when I shouldn’t have to.
I really hope all goes well for you when you see the cardiologist, you’re heading in the right direction now. Fingers crossed for you.
Sarah
Sarah JParticipantThank you Barbara,
I have just made an appointment with my GP, hopefully they will help me out and refer me, fingers crossed!
Sarah
Sarah JParticipantHi Barbara,
Thanks again for your helpful replies, do you think I would be better off paying to go private for a head/neck MRI and to see a neurologist? I feel that the NHS can often just rush you through and not be as thorough. Also do you think I should mention that I think it could be CSF? I know doctors don’t like to be told their job etc.
Many thanks,
SarahSarah JParticipantHi Barbara,
Yes I was a hairdresser so it involved a lot of looking down, had done it for 10 years. I did manage to grab something to eat really quick even though I was very busy, it normally meant grabbing a bit of a sandwich and some crisps here and there in between clients, I barely used to drink though at the time.
I didn’t suffer with stomach problems, only constipation at times. I wasn’t taking any painkillers or antacids leading up to becoming unwell.
How would I go about seeing if it could be CSF that is causing this problem? I have looked online and it says they would need to do a lumbar puncture, the thought of that scares me a bit knowing the risks. I have just looked on your link regarding looking at the eyes, are most optitions familiar with CSF etc? Just you know what its like trying to get things done over here, with doctors etc giving you funny looks and thinking your crazy lol.
The headaches that are relived when laying down are the back of head and neck pain headaches.
Thanks so much for all your help, I really appreciate it ๐
SarahSarah JParticipantHi Barbara,
Thank you so much for your reply.
Unfortunately I don’t know for certain what triggered my POTS, at the time I was working a lot of busy hours on my feet and was under a lot of stress so have just put it down to that. I haven’t had any head or neck injury’s.
I haven’t really noticed anything that brings on my headaches, I have them nearly all the time, there’s a constant slight pain/ache. But most days it is very bad, I get all sorts of headaches, sometimes it feels like my whole head is in a vice, sometimes behind my eyes and forehead, sometimes the base of my head and neck, sometimes both of those together. It often feels like I have a hat on. Nope, I’m not hypermobile. Only sometimes by laying down it helps with the headaches, not always though.
I have had a brain MRI but that was when I first become unwell, before the headaches started.
Many thanks
Sarah -
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