RubberduckzillA Posted October 29, 2018 Report Share Posted October 29, 2018 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... Quote Link to comment Share on other sites More sharing options...
Pistol Posted October 29, 2018 Report Share Posted October 29, 2018 Hello @RubberduckzillA - I have hyperadrenergic POTS and take seizures due to excessive vasoconstriction and no circulation in my brain, this being with hypertension. The seizures appear exactly like grand mal seizure and I am unconscious during them. I also have syncopal episodes when my BP drops. Both of these are caused by dysautonomia. But I do not have the weakness and tremors like you describe. I do get tremors when I am in a surge but not a severe as yours. I would very much go to a neurologist since I do not believe the weakness/ inability to stand/ muscle pain and coccyx pain are normal POTS symptoms. Please notify your GP and have them evaluate you ASAP. Best wishes!!! Quote Link to comment Share on other sites More sharing options...
Mikayla Posted October 30, 2018 Report Share Posted October 30, 2018 Hi , i have had some shaking of my hands and inability to remain standing up but nothing anywhere close to as extreme as you are experiencing. It must be scary. I hope you find some clarity and relief soon. Best of luck to you 🌸 Quote Link to comment Share on other sites More sharing options...
RubberduckzillA Posted October 30, 2018 Author Report Share Posted October 30, 2018 Thanks for the input guys, I agreed with the GP to wait and see the POTS specialist before going to a neuro, but if I don't hear back from them soon I will go back to the GP and ask to see a neuro. Im also being sent to a gastrointerolgist, so it does seem kind of reasonable to see these other specialists before then going to another one, as it can become a bit of a mess. It has been a scary time and I do really want to get to the bottom of it, but things take quite long though the NHS these days. I am unable to go private as I was actually fired 6 months into a job once I got ill in March (legal in the UK) and it's just been downhill since. I had an episode last night where I was gettign flashign with my eyes closed and like constantly feeling like I was dropping out of conciousness only to get some muscle jolts and come back awake. I've also been living with some glaring issues etc in my eyes and 3 years of closing my eyes and having imprints of what I was just looking at, it also happens with my eyes open, but it is a lot more noticeable with my eyes closed. Really wondering if I should have pushed for a neuro yesterday. Again though I don't want to be seen as a hypocondriac or pushy. The first doctor I saw after having an ambluance called for me, didn't even check my BP or HR and instantly dismissed heart issues due to my age. I ended up suffering for amonth until I found this good GP. Quote Link to comment Share on other sites More sharing options...
RubberduckzillA Posted October 30, 2018 Author Report Share Posted October 30, 2018 12 hours ago, Pistol said: Hello @RubberduckzillA - I have hyperadrenergic POTS and take seizures due to excessive vasoconstriction and no circulation in my brain, this being with hypertension. The seizures appear exactly like grand mal seizure and I am unconscious during them. I also have syncopal episodes when my BP drops. Both of these are caused by dysautonomia. But I do not have the weakness and tremors like you describe. I do get tremors when I am in a surge but not a severe as yours. I would very much go to a neurologist since I do not believe the weakness/ inability to stand/ muscle pain and coccyx pain are normal POTS symptoms. Please notify your GP and have them evaluate you ASAP. Best wishes!!! @Pistol I just looked up grand mal seizures on youtube, and I have to say the muscle constriction stuff and movements I see people making are definitely at least almost identical to what I have but with full conciousness. The NHS is quite shoddy at times, there are some awful doctors and nurses etc. I've had it being a seizure written off, simply because I was concious, but i've read multiple times it is possible to be fully concious during these episodes. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted October 30, 2018 Report Share Posted October 30, 2018 I am not sure if what you have could be POTS but dysautonomia in general is possible. There are many types. With your eye symptoms have you tried seeing an ophthalmologist? My sister in law got her MS diagnosis started through an eye doctor. You would be surprised what they see in your eyes. What you are going through sounds rough, I hope you feel better soon. Quote Link to comment Share on other sites More sharing options...
RubberduckzillA Posted October 30, 2018 Author Report Share Posted October 30, 2018 i've seen eye doctors, they said they could find nothing wrong and put it down to a retinal migraine years ago, i also had a brains can years ago that came bakck normal Quote Link to comment Share on other sites More sharing options...
TCP Posted October 30, 2018 Report Share Posted October 30, 2018 Hi. Mitral valve issues can be linked to Ehlers-Danlos, which in turn is linked to POTS. I know of lots of people with POTS who get seizures, too. I get the shakes and temors a lot. When they flared up I was hospitalised several times. I hope you can get some help soon. Quote Link to comment Share on other sites More sharing options...
RubberduckzillA Posted October 30, 2018 Author Report Share Posted October 30, 2018 @TCP Thanks for the feedback, i'm awaiting to hear on my MRI results to see if it confirms the mitral issue, I know marfans can be part of it too. I've been given basic tests for hypermobility tc (just finger pushes etc). Could I PM you a video of my tremors on my birthday? Just wanting to gage if its the same kind of tremor. It starts with my legs and then moves up to the upper part of my body but I am pretty much fully concious, and converse etc during it. My last episode was by far the most violent and about 5 times as longer as all my over ones. I have done some research after these responses and if I understand it correctly, quite often POTS is a secondary condition and there is normally an underlying condition that causes it. I do have some protruding bones above my chestbone etc. My mother has mentioned ED to me, and someone else has mentioned marfans. Doctors in the UK seem to instantly rule it out though, based on very basic tests with fingers and arms and legs involving pushing against the doctors direction and bending... Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted October 31, 2018 Report Share Posted October 31, 2018 As far as I know that is the only way to diagnosis EDS or Marfan's. Unless your EDS is the non-hypermobile type. In which case those are different tests but widely different symptoms. Quote Link to comment Share on other sites More sharing options...
jvherenow Posted November 4, 2018 Report Share Posted November 4, 2018 I have POTS/small fiber neuropathy and I also get tremors, mostly just right sided, and much milder than yours but they can last hours. I'll usually have pretty significant brain fog during those times. I'm able to talk but my voice is usually quite breathy and sounds like an MS voice. I've seen neuros and they haven't been able to diagnose anything. The tremors have become less frequent since I started seeing an integrative MD. She's got me on all kinds of supplements and prescriptions that have all helped. I wish I had more to tell you. I'm also looking for answers. Please keep us posted! Quote Link to comment Share on other sites More sharing options...
Help4Me Posted November 29, 2018 Report Share Posted November 29, 2018 jvherenow.....can you tell me what has been working for you....I have horrible shakes and tremors...mine are mostly on the inside....I would like to know what supplements you take and perscriptions etc thanks so much Quote Link to comment Share on other sites More sharing options...
MedMystery Posted July 13, 2019 Report Share Posted July 13, 2019 Hi RubberduckzillA, did you ever get a diagnosis? I'm having very similar symptoms but I only get mild tremors, everything else you have said happens to me. Quote Link to comment Share on other sites More sharing options...
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