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dancer65

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About dancer65

  • Rank
    Advanced Member
  • Birthday 02/26/1965

Profile Information

  • Gender
    Female
  • Location
    uk
  • Interests
    ballet cooking

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1,617 profile views
  1. Hi I had knee surgery last Thursday under general anaesthetic, like you I was so nervous as I was very ill after my hysterectomy, at that time I was undiagnosed but very symptomatic. My anaesthesiologist didnt know about POTS. Due to lack of fluids I arrived at hospital with a full blown migraine. The staff were amazing and listened to my husbands explanation of POTS and it’s management resulting in me being taken to the ward and being given fluids before my op. I had to walk to theatre so by time I got there I was in excruciating pain from the migraine. They asked for my hand and said pain killers going in and the next thing I awoke in the recovery room! I have a history of panic and hitting out as I come out of anaesthetic so I had forewarned them, my first words were did I hit anyone and the nurses laughed no we left you to come around on your own ! I made them aware of my high adrenaline so pain and nausea could be a problem . My Bp also crashes. I woke up without any pain, no nausea, no panic and feeling like I had just been asleep. I do think that anaesthetic has really improved.i went to theatre at 1.45 pm and was on my way home by 6 pm. Interestingly my HR was normal upon standing for two days after surgery I am sure that was due to fluids. The staff were just amazingly kind and listened to what would help so I have written to thank each department . Hope this helps x
  2. You friend has probably already done this but I finally got my diagnosis after handing a list of every symptom I had written down as they happened over a period of time. I have read in some medical articles that sometimes a list can really help the Dr to make connections and it can be that the symptom that seems insignificant to the patient that steers them in the right direction. Personally I would not have remembered every thing that was going on too much brain fog . I do agree with Pistol having another person with you makes all the difference for support and my experience has been my husband has been asked many questions about his perspective of my health, sometimes that validation made me feel more confident I would not be labelled a hypochondriac as I had been for years when I was single. My heart goes out to your friend it’s awful not understanding what is happening to your health, I hope she gets to the bottom of it soon . She is fortunate to have you as a friend !
  3. I feel for you trying to get out of area funding it’s so hard to fight when you are not well ! It’s exhausting I always find you never have the right phone number and get passed around departments ! I know someone who had a cfs leak I think she was treated in Birmingham she is back to work as a carer for a disabled client . I just hope you get this sorted ASAP !
  4. Really pleased you have at last found some answers I hope all goes well for you from now on !
  5. Radom symptom man have you thought about keeping a dairy ? I logged everything and found this very useful over time, I started to see pattens That triggered symptoms, syncope, PEM, and it helped me remember meds and to drink. It was also helpful reference for notes to make when I attended appointments as brain fog often made me forget important information.
  6. I agree with Pistol it’s about how you feeling it’s easy to get to checking vitals all the time . My consultant told me not to rely on the numbers but to listen to my body .
  7. I have been complaining about symptoms for years but after fainting numerous times my own GP suspects POTS. I waited almost two years before I was seen at a syncope clinic . I’m in UK . I couldn’t afford to go privately because here if you do you have to pay for all the tests and any medication prescribed., l also wasn’t working . I know it seems like every day is an eternity .
  8. Yep me too hate confrontation and stressful situations . Sweat, shake, can’t sleep, heart rate soars in seconds and I usually run away ! Sitting for too long can have exact same effect on me . Made the choice this year to remove all people who stress me out of my life, drastic I know but what a difference it has made . meditating daily has helped as I overthink things way too much . I also over react so learnt to control my emotions better . Welcome by the way !
  9. I don’t take anything for my autoimmune diseases as they only work when taking them and I can only have short courses but they have made me feel better In myself , at the time I was undiagnosed with POTS and was labelled a hypochondriac, so when I said I felt better I was told it was just coincidence! Sorry you are suffering again so frustrating, so not fair ! Hope you can get sorted with new meds soon and things improve
  10. I take chlorphenamine at bed time ,h1 blocker. I have been tested so I know what most of my allergies are which has been really helpful. I use air filters and I have decided to look into pollen screens for the windows thought it might also keep out those pesky mosquitoes! Sorry it’s put you in a flare x
  11. I smiled when I read you do passe releve whilst waiting for lunch , obviously you trained in ballet ! Due to an injury I can't dance properly at the moment it's had a huge impact on my POTS. Can't wait to be able to put on my music and do barre in the studio, find the music so soothing as well always, feel calm afterwards
  12. I don't knit or crotchet but I use to sew for myself a lot , now it's always costumes for my ballet kids! There are some great tutorials on line and so many talented people with creative ideas for all sorts of crafts.
  13. These made me smile !
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