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 was made redundant from a job I started 6 months ago due to this illness, and would like to get to the bottom of it as soon as I can.
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 earlier where my heart 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 within a few seconds went to 193/107 and a bpm of 110-125 and 130-160 mmHg systolic.
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.
I have been having imprinting in my vision, both opened and closed and glare, which was put down to a “retinal migraine” as they could not tell what was causing it, i’ve had this for around 3 years now, every single day.
I was on a POTS forum and people said the tremors/spasms do not relaly match what you would expect of POTS, and may well be MS or something similar. Also has anyone heard of a POTS and MS combo at all?
Would someone be able to look at this video and tell me if they believe it to be indicative of MS? It was by far the worst episode I have had and started after I sat down after having pains in my chest standing. My right leg went shaking like mad, and then my whole body went and I fell off the chair.
It does seem like a MS Spasm video I have seen
I don’t want to be forceful with my GP, but if the input I have received so far is right, I would definitely need to be seen by a neuro before seeing a POTS specialist.