I'm very new here and don't have a POTS diagnosis though it has been often mentioned by various doctors and specialists. But my symptoms are getting worse and FINALLY I have an appointment with Rhumeotology next tuesday.
My main worry/concern and general 'this is making my life h***' episodes are what I want to get to the root cause of, because honestly at this point I'm ready to throw in the towel. These episodes have been going on nearly two years now and have been getting worse steadily.
They start with me feeling 'off' I cannot explain it, I just don't feel right. Within an hour I start to tremble, it used to start with my right arm but now it just starts. My entire body tremors, violently. During this my blood pressure goes up dramatically as does my heart rate, (143/90 128HR roughly and my normal is 97/54 52HR) recently a doctor caught it on an ecg and it 'was just sinus tachycardia' nothing unusual. (This was during one of the mildest episodes I've ever had.) So anyway my HR does increase (I have a blood pressure monitor and HR monitor). My temp is often all over the place. Worse of all if I've eaten I feel incredibly nauseous (I have emitiphobia) I burp a lot during this and all I can do is sip water, have some BM's, if I haven't eaten the episodes usually aren't as long and I don't get such severe nausea. Obviously I'm absolutely knackered afterwards and the next couple of days I'm not quite right.
The episodes only ever start in the early evening but they last... AT LEAST 6 HOURS. YES. REALLY. I can't begin to explain how awful these things are. I just have to wait it out, literally nothing helps other than to sit in bed, trying to contain any anxiety I have (Oh yes another mention, when I saw the doctor confirmed it certainly wasn't a panic/anxiety attack, much to my delight. The nurse and doctor were in fact staggered by how calm I was whilst my body was twitching away and causing me to stutter, laughing and joking with them, again it was a very minor episode.)
I've seen neurology, she ruled out everything she could possibly think of, she was VERY thorough and apologetic. I then got sent to Endo, he was also amazing, did every test under the sun, and I mean I have never had so much blood taken from me in my life. Only thing found is IGF-1 factors were a little high so I'm awaiting an MRI to check for a pituitary tumour. He assured me this wouldn't cause my shaking episodes whatsoever. He's the one who convinced Rhum to see me as they rejected me before and Neuro wrote a letter asking for them to see me too.
I've attached a video of my most recent episode, I have an ice pack under my vest as being cooler for me helps, I react badly to being warm. I apologise for the sound, watching gilmore girls helps distract me.
Other notes: I have celiac disease, osteoporosis, IBS and EDS. I'm female and 28.
My entire life I've suffered dizzy spells, I manage it by drinking electrolyte water, extra high salt diet, lots of water and compression leggings. No baths (I faint as soon as I stand up to get out). So I've been self managing.
I cannot find ANY triggers other than occasionally it coincides to when my period is due, but has come other times also so it could be coincidence.
SO I apologise for my long post. I just want to hear your thoughts, anyone else that suffers similarly, anything I can explain or say to Rhuem? Any tips on decreasing these if you do have them!? I know this isn't classic POTS. I'm just desperate for answers, help and for these to stop. I get scared of eating in the evenings. Ask any questions if needed I tried to include all information.