Does Anyone Recognize These All-Body Shakes?

[Friedbrain]

Lovebug shared this link in another thread, so I thank her for bringing this to my attention. Since I would like info on this particular video, I thought I'd start a separate thread specifically asking about this symptom. I was hoping someone from this site might be able to shed more light on what is going on with this woman's (and my) all-over body shakes (I find it disturbing to watch, but the first minute or two are enough to see what the shakes are like):

Does anyone know what causes this? The title of the youtube video is "POTS Full body tremors". You can't see her feet very well, but periodically you can tell that she is shaking from her head to her toes. I definitely experience these shaking/jerking episodes, and they're pretty intense. I've considered the possibilities that they're anything from partial seizures to panic attacks to I don't knows.... The idea that people with POTS recognize them is actually, well, affirming. I'll list off the different times and different ways I experience the same ultimate symptom:

1) Going back 18 ys, I've experienced these extreme body shakes upon exposure to cold weather (going outside and sitting in a car) when under stress. For example, dealing with my inlaws, then going out to a cold car...I would just start shaking until my teeth were chattering and my whole body was jerking. Dh would tell me to relax but I couldn't stop them! (so no "prelude" to the shaking, unlike episodes described below)

2) 9 ys ago, I started experiencing grand mal (unconscious) seizures under VERY specific conditions: middle of night, before my period. Once I became stabilized on medication, I stopped having unconscious seizures, but for the past 8 ys, have had what I (and the docs) called "periodic breakthrough partial seizures" that would occur during times of stress, but only in the middle of the night, before my period. I'd wake up with heart racing, nausea, head pressure building, and then my entire body would start shaking/jerking. I would take a xanax and about 15 min later, I would start winding down.

3) I had a daytime episode three months ago, out of the blue. Scared me because the timing was unusual and because it wouldn't stop, so I went to the ER, which was backed up. Therefore, I experienced this shaking/jerking for about 4 hrs before they loaded me with ativan and I stopped. ER doc called it a seizure and told me to see my neuro. My neuro said he wasn't sure since it was unusual and told me to be careful.

4) I induced an episode like this in the daytime by exercising with only water instead of salt-loading last month. Dizzy, followed by heat/heart racing, followed by shaking that lasted until dh came to get me and gave me salted water. Cardio told me it was because I have POTS (first time to get diagnosis) and that I need to salt-load; that lack of brain perfusion can bring on seizures.

5) Now that my health seems more unstable, I start getting shakes when I'm stressed and even lightly cold (maybe like Sara4?). I go sit under my heater blanket until I calm down (again, these don't include the autonomic "warnings")

I live in a small town and the neuro wasn't really familiar with POTS so I haven't bothered seeing him about this yet (I called and asked before wasting my time there; I had to drive an hour for the cardio). The more info I can learn on my own, the better off I am when I DO talk to him!

So....? Thank you so much for your thoughts!

[MomtoGiuliana]

There's been a lot of discussion here on this.

I used to get this symptom when my symptoms were most severe. My doctor said there was no physiological explanation. ugh.

[lissy]

I get this symptom every once in awhile, usually when I take meds and sometimes they just come on...I went to the ER the 1st time it happened which was when I was 18 and I shook for hours until the doctor gave me a 1/2 a zanax and told me I was having a panic attack. It actually happened when I was having my hemodynamic tests at Cleveland Clinic when they injected me with iodine I shook and shook for about an hour , they gave me a warm blanket and it finally stopped. The nurses said it was probally just my nerves, and they have seen others react like that before but nothing to do with the iodine.

[babettess]

I get the full body shakes, too. Especially when I'm cold or over-stimulated by noise. Warm blankets or heating pads and pressure on me help. Usually I know I need to get an IV if I get them. My counselor witnessed an episode and said it wasn't a panic attack.

I have no idea what causes these shakes either.

Babette

[Friedbrain]

...My doctor said there was no physiological explanation. ugh.

Full disclosure....I have a PhD in a medical sciences field, so my ultimate hope is that I'll be able to put these pieces together for my sake (because doctors sure haven't over the last 9 ys!) (side benefit-for others, as well . I guess that's why I'm asking for as much info as possible. There IS a physiological reason for it...it's just not known, yet. So please tell me as many details about your experiences as you can think of, because I will file them away and think about them, and research them with mine, and see what I can see.

As frustrated as I was thinking I had a brain dysfunction that neuros couldn't explain (the seizures and MS-but not MS-like symptoms), I'm 100x more frustrated realizing I may have an autonomic nervous system dysfunction that very few doctors even remember studying. Not my neuro, not my endo.... And I get that. In grad school, I had to take my specialty class with the med students, and it was all about memorization and textbook answers. If x happens, then it's y. It drove the graduate students CRAZY because we wanted to know the WHY of everything but to the med students needing to learn the material, the WHY was irrelevant. I understood it then, but now I'm a victim of that same system. If it's not in their "recipe book", then they don't know and they can't figure it out. And on top of that, doctors who practice day in and day out end up being most familiar with their most common cases, which makes sense. I learned THAT when I needed an endo familiar with adrenal insufficiency: most endos specialize in diabetes.....

So if you don't mind me asking....Lissy, under what conditions do you experience the whole-body shakes? Do you have autonomic warnings, or do the shakes just start? What kind of meds set it off? And MomtoGuiliana-do you have autonomic warnings? What kind of other symptoms ("severe symptoms") are you having when you experience these shakes? Fwiw, I also have hashimoto's. Since high school. Thanks!

[MamaTrain]

Hi! I had these a lot in the beginning of my dysauto (2 years ago) but now I only get them during my "bad" week of the month which I believe to be the week before my period. I don't actually have a period so I am just assuming cause it's around the same time every month. Getting cold will set me off and I just HATE when it happens. I usually shake for about 10-20 mins and then I am exhausted afterward! I can feel them coming on because I wont be able to shake off the chill then I will feel very odd like light headed but I'm laying down and I will begin to shake. We have taken my blood sugar during these episodes and it is fine. I will ususally have a racing heart during them then it eases off when it's over. It's very strange and like I already said they are the thing that I hate the most about this whole stupid thing! Oh and I have noticed it only happens at night time. I wonder if it has anything to do with my poor adrenal glands. I need to have my cortisol checked again to see where I am at now. I love that there are other people out there who know what I am going through...thank you for being so willing to share your experiences!

KC

[Angelika_23]

Hi There,

I have had this happen a couple times and it is very scary. I have no idea what caused it, and I hope it never happens again. I find that it did happen in the mornings, right before my meds. After my meds kicked in it calmed down. In the morning I take Clonazepam (among other things), so maybe that helped?

I'm sorry these things happen to you. I hope you get the answers you are seeking.

Angela

[Chaos]

I've had similar looking episodes several times. For me I look like I'm shivering uncontrollably (according to my husband). I don't initially feel like I'm cold, but the nurses always pile tons of blankets on me and if they get moved off of me, I do feel very cold and it flares it up worse again. Most of them seem to be related to my BP dropping- specifically after my TTTs and once spontaneously after walking into a building and sitting down. None of those times were associated with any feelings of panic or anxiety...but a LOT of frustration (after it started) that it was happening again and I couldn't control it. The episodes have run from 4-12.5 hours.

Awhile ago Ramakentesh (whom I haven't seen on the forum here since we changed sites) was relaying info from some studies done by Julian Stewart out of NY. He's studying the relationship between hypocapnia (decreased CO2)and cerebral hypoperfusion in OI issues. You can probably do a search on this site or google either Julian Stewart or Phillip Low and find some studies related to this topic. TXPOTS also has had some threads here related to CO2 levels that you might find interesting.

Along with these episodes,I've gone into tetany (once)and "near-tetany" the other times, had my left side go numb, been very short of breath with some resultant hyperventilation, very weak, and had my hands and feet go absolutely white and very cold. The cardiologist at CC said it was an abnormal reaction to a TTT and wanted me to see neuro. The local neuro I finally got to see says "it's a totally normal reaction to hypotension." He also said he didn't know why I was seeing neurology for a cardiology problem. Guess he missed the part about the autonomic NERVOUS system being dysfunctional. Yeesh!

If you need more specifics feel free to PM me. Please keep us posted if you find anything interesting!

[Sarah4444]

My worst episode was this summer, also during the night. It was as though I got cold but instead of the normal kind of shivering that would happen with cold (which is theoretically controlled by the autonomic nervous system), I was shaking like crazy. This was during a time when I was having terrible POTS and MCAD symptoms, waking every night with a falling feeling then tachycardia, and during the day having bp drops and SVT while supine.

The only explanations I could come up with were that the normal shivering response is somehow exaggerated/messed up due to ANS dysfunction, or maybe it's another response to cerebral hypoperfusion. I haven't even bothered telling doctors about this episode because since I started the meds I now take, I haven't experienced it again. On the MCAD sites there are some articles about anaphylaxis related to changes in hormone levels - I have no idea if this could be connected.

[songcanary]

Brings back memories--BAD ones. I have had several of these shaking episodes, four times to the ER. But of course by the time I got there I had stabilized. The intial one was after walking on a treadmill at PT. And I was only on there five minutes and going really slowly. I felt nauseated and flushed and asked the PT to take my vitals and they were normal. But then the shaking started and I felt horribly cold and it got so bad they called an ambulance. I was shaking the table and then the gurney as well. I don't know what my temp was then, but when it happened at home my temp has been as low as 94.5. My idiot GP actually had the nerve to suggest that either my thermometer was broken or I didn't know how to use it. Excuse me but I have had a career in health care for the last 25 years and he knew that. Thermometers I can handle.

I never got an explanation from any of my docs, but in my heart I feel it was due at least in part to adrenal insufficiency. I had so many of the symptoms; profound weight loss, nausea, weakness, low blood pressure. I have not had a shaking spell since I started on doxepin, Armour thyroid and salt water. These all happened within the same month. So I don't know if one or all of them made the difference but I am not tipping the boat at this point! I do know that the Armour has brought my temp back up to a reliable 97.5 during the day which is a great relief.

I would LOVE to know exactly what triggered these episodes in me. I can deal with pretty much anything if I know the reason behind it. But so much of this illness is a mystery--it is frustrating at best.

[MomtoGiuliana]

...My doctor said there was no physiological explanation. ugh.

And MomtoGuiliana-do you have autonomic warnings? What kind of other symptoms ("severe symptoms") are you having when you experience these shakes? Fwiw, I also have hashimoto's. Since high school. Thanks!

Friedbrain...I do not remember specific warnings--this was back in 2003 mainly. At that time I was severely sick constantly--too weak to stand much, walking from the bedroom to the living room was exhausting, very difficult to focus on anything or do anything. I would just get these episodes--they usually lasted only a few minutes. I don't remember any other symptoms arising or becoming worse during the episodes. It's interesting how many of us have both hashimoto's and POTS--I guess about 10% of women have hashimoto's--don't know if this %-age is higher among POTS patients. I do know that when my meds are adjusted my symptoms get worse as I adjust.

[skiberthoud]

I also have these full body tremors. Don't enjoy them at all. I've only experience them during my full-blown episodes. My episodes consist of repeated vomitting, BM's, virtually continuous urination, headache and tremors. Typically these occur when I start my period, however I have had them at other times. Almost every episode I have had has been at night. Most times these episodes come in waves for hours. By waves I mean that I get these 30 second "rest" breaks (about every 15 minutes) where I get overwhelming "heavy" and exhausted, the tremors stop, but I can't speak or hold my head up (heavy and exhausted), then I "wake back up" and continue with the tremors and everything else. I can typically tell when I'm headed down that road, but not until it starts, and usually I will take a Lorazepam to help me ride the wave. Since doing that I've noticed that my HR's haven't been going so high during the episodes - so the anxiety part definately does make things worse. So that's my story. I have no answers and not a single diagnosis and haven't found anything that consistantly helps. But, I'll keep searching and enduring. I'm sorry so many others deal with similar things, and those that deal with so much more!

[lissy]

Medications that seems to trigger ----Antibiotics, Anti fungals, Pain meds during labor, Epi- for dental work

It has happened mostly at home, approx 10 times in a medical environment.

Warning signs---flushing, heightened senses, sometimes chest pain, then the shaking then cold and finally exhaustion

periods of calmness like another posted.

Duration-40 minutes to 4 hours

Had all autonomic testing- No PAF or severe form of dys

Clear MRI's

Currently doing the 24hr urine for Pheo.

It seems like my body is going from extremes hot to cold full body and mind fatigue to a heightened sense of (heart rate, breathing, senses)

Shaking has always happened sitting or laying and a lesser version during emotional stress/trauma. Also pupils dilate. Adrenaline rush???

Maybe the hyper type of POTS is my issue or a pheo I will soon know.

I know the chemicals or hormones are all out of wack with all these conditions I guess finding out which one is malfunctions is the key. I personally don't think dysautonomia as a whole is just dysfunction for no reason, I mean our condition is being diagnosed as a whole (autonomic nervous system is not working properly) but many organs are a part of that and if you haven't had them individually tested the answer properly will never be found, you'll just be treated for the obvious and not the true problem. Who knows maybe we'll never get all the answers in this life-time the medical field is at a slower pace that what most realize this problem has been happening for many years and called hysteria and I'm guessing that was what 70 years ago and we had no concrete knowledge yet ....We are not looked at as a individual anymore doctors don't have time if our symptom fits the patient that just walked out 15 minutes before us that is what we have and nothing gets solved. Look at AIDS how many people were told it was a gastrointestinal problem and so many died but they invested more research and money into that because it was affecting more people and some were rich. I can go on and on sorry to get off topic, but we come here to this site for support and we compare symptoms and its ridiculous that we have to figure this out ourselves because the meds that are available don't benefit the pharmaceutical company's enough and the information that is known about these conditions are so inadequate because of money they don't have enough money to research more in depth. I seen a few ppl on this site that were here for years finally get a REAL diagnoses and they never came back I honestly believe most of us here have something else going on, not just dysautonomia thats secondary. (Dysautonomia is a group of signs and symptoms). Like I have said before I was told most of my life I have Generalized anxiety disorder I have went to the ER for this shaking and was told is was a panic attack and now 14 years later I'm told I have autonomic nervous system dysfunction. I pray to god for all of us to get the real problem under control and be able to stay positive throughout this process. All it would take is One rich person with a very intelligent doctor that has nothing but time and this could all be figured out.I know most of us have been to the best hospitals just to be right back here asking each other questions it is because they still don't know and we are just test subjects while they are still trying to figure it out. Sorry for my rant but its the truth, I will continue to come here and read what other have found out and post the crazy symptoms I have to endure everyday, and we are in this together and just knowing we are not alone is what matters the most.

[issie]

I was initially diagnosed with Parkinson's and treated for over a year and a half because of these things. The meds didn't help - in fact - I got worse on them. (Then I got the POTS diagnosis.) I still have the tremors, sometimes worse than other times - don't know why. I'm thinking that something to do with the epinephrine and norephedrine have something to do with it. I get the same type shakes with dentist anesthesia in the numbing shots. Start shaking all over. I was told that the epinephrine in the shot did it.

I also think that an autoimmune issue is involved with it. MS people have these type of tremors - and this is an autoimmune problem that affects the nervous system. ( They do want to check me for MS. Trying my diet change first.)

I too have low body temp. I was told that part of it was the body not converting the T4 into T3 properly. It's called Wilson Syndrome. Armour Thyroid will help, but also additional T3 is what is usually done for it. I couldn't get my body temp up because the T3 is hard on your heart and my tacy got worse.

[lieze]

I shake and shiver at the end of my episodes.

I'm usually relieved when I see this sign because it means it's almost over.

I also did the shaking after the dye with the CT scan.

[Sarah4444]

Reading these posts, it makes me wonder if this has anything to do with an article I read about a rare kind of anaphylaxis that occurs in response to the hormone levels at the outset of menstruation. I also stopped having these episodes once I started a low dose of doxepin before bed.