I've been suffering since March after feeling really heavy at work and then going into a seizure like episode where my limbs shake uncontrollably. I've had multiple issues since, such as extreme bowel issues, random bursts of nausea and wrenching and vomiting. A random heart rate which fluctuates daily. I've had tests done for pots and it is believed i suffer from it, there were also notes on my ultrasound , which my cardiologist brushed over, but i saw mild regurgitation on my mitral valve. What I can't get over though is every month to month and a half I get severe pain in my coxis and have an episode where I lose control of my body for 5 minutes, and occasionally throw up afterwards. I get episodes of spacing out when this happens. after spacing out and losing control of my leg I now have the severe coxis pain again. I've had the feeling this would happen all day, waking up wrenching. From the research I've done These seizures and back pain does not seem to be something you would expect of PoTS?
I recently had an incredibly violent episode on the 2nd of October, my birthday. The full on tremor lasted 25-30 minutes, and the tremors overall took hours to go away, I did have an episode earlie rwher emy ehart was racing and had to go out to an appointment and had some tremors. The ambulance came about 20 minutes in and said vitals were a bit high but nothing concerning. I was unable to walk on my legs without massive difficulty for 3-4 days due to muscle pain in my legs, due to how violent it was. I have had little episodes, accompanied by vomiting etc since. I have an episode at least once a month and I now am having nausea and cocyx pain agin, ,i'm expecting another episode soon, as I am effectively due going my the usual schedule.
I had an MRI and I felt my hands etc feel very swollen, but percevered, after struggling to getup due to a heavy head etc, after 5 minutes of the MRI being over, I was still shaking but tried to stand and fell. I ended up beign in a wheelchair for over an horu waiting to ride the most of the episode out. The next day I had a health assessment for job seekers, I tried to get up to change chairs and my legs went on me again quite like in this video but a bit worse if anything Youtube Video .
I went to my GPs today to give them an update while I await to see a specalist via the NHS. Which I have been told may be a year. The GP suggested seeing a neuro but felt, and I agree that it is best to see the POTS specialist first. However if I am awaiting a year, I feel like, given these episodes have become more violent, that it is best I ask for a referral before seeing the specialist.
I had a tilt test and the test showed 92 bpm laying down but when I stood my bp went from 129/75 to 82/52 with a BPM of 135, it then withign a few secons went to 193/107 and a bpm of 110-125 and 130-160 mmHg systolic.
I was just wondering if other peopel with POTS suffer from severe body shakes all over or not, how viloent they are and how long they last? I have read cases of people being misdiagnosed with pots when it was Adrenal gland tumors.
I have had palpatations and shaking when I was 18 but very mild, I passed out once at work and had severe migraines etc when I was 22. However with these episodes this year I have not blacked out and have full conciousnes or a bit spaced out during the full body tremors.
Another video I have noticed, that are similar to my symptoms but nowhere near as violent a smy last outburst on the 2nd of october Youtube video
Update 31/10 - Here is a link to the attack I had on my birthday Tremor/SpasmCould this be MS?Sorry for the language,I don't have as much support as I would like from my mother...