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uhhhhhh....


justin
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so last night i had this intense event. it started with me not being able to breathe very well, then my HR increased dramatically (to 166 lying down from about 78 just before) and my BP shot up (it was 144/98 then, it was at 153/88). then i started convulsing. my entire body, limbs, head, everything was shaking. i was conscious, though. my roomate found me like this, on the floor in the doorway to my bedroom (he was the one who checked my BP and HR). this subsided after about 1/2 an hour. today i feel like a truck hit me, and i have a throbbing, dull headache and neck pain. probably my muscles are really sore...heh...

this freaks me right out, especially considering since i've been on the beta-blocker, my resting HR is usually 60-80 and my resting BP is around 110-120/60-65.

so, uh, convulsions, seizures? anyone? anyone?

justin

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Justin,

I just posted on this subject on another board.

I have had this happen to me early on in the illness, but it is pretty much under control with meds now. I thought I was having a seizure but I knew I wasn't because was totally cognizant of what was going on, just my limbs were shivering horribly and my hr was way up, don't know what my BP was at that time, though.

Did you do anything differently yesterday that could have triggered an attack. I had this recently (mildly), too, after deciding to have cookies and ice cream for lunch (sugar is a major trigger for me). I happened to have a cardiologist appt that same day and my hr was 116 resting and 135 standing - with a bp of 135/80 - which is extremely high for me.

I'm not advocating tranquilizers for this condition, but I take Lorazepam (Ativan) and it does help me when things get really bad. I don't like doubling up on the beta blocker cause it causes my bp to crash too much, but maybe that would be an option.

Someone on another board mentioned Phenobarbital - she said it worked for her.

I think the best thing is figuring out if there was a triggering event and trying to avoid it.

I hate when that happens, it is really scary, like you've lost total control.

Hope you are feeling better soon.

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Justin, I know several people who have had similar experiences to you. I have witnessed several "seizure-like" episodes that happened to one of my friends at the NDRF conference. A very long seizure happened after she was startled awake by a roomate who smelled smoke and thought there was a fire. Apparently, the surge in epinephrine that happened when get she woke and thought there was a fire set off the whole thing. She needs to use a wheel chair after such events because she's so weak afterward.

Not sure how helpful it is to know your not alone; doesn't make things much less scary when it's happening to you.

:blink:

You should definitely talk to you doctor (who ever is managing your autonomic problems) about what happened.

Nina ;)

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yeah, i called my cardiologist and my gp. both of them closed their offices early today, so i left a message for them to call me back at the beginning of next week.

i guess, yes, there could have been a trigger. yesterday i did exert myself more than usual. i got ambitious and tried to put up some shelves, which meant moving some stuff around. also i was out grocery shopping for a long time while it was windy and cold. on my feet for quite a while.

thanks, folks...

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My husband too has these shaking episodes. He has been diagnosed with Essential Tremor. However, when he has these sometimes-violent episodes - even his neurologist says that essential tremors shouldn't be that intense. I can tell you that sometimes he has these episodes after getting out of the shower, taking a walk, or sometimes just changing his position from sitting to lying down. He also notices that these episodes almost always occur after an episode of extreme lightheadedness. I wonder if this isn't associated with a change in blood pressure or possibly blood volume. He had a very intense episode happen after his pulmonary doctor had him do a breathing test not once, but twice. During the test his heart went into an arrhythmia and then the shaking started. It went on for over an hour and a half. Due to the severity of his over all condition he?s home & currently wading through the social security disability forms and process. The people who generally see these episodes are his doctors and myself.

When he was in the hospital back in Feb of this year he was having the episodes of shaking really bad. The CAT scan showed nothing. The neurologist at the time said that he looked like he was having a seizure, but no medical test that he had done on him proved that was what was happening. To be honest, we haven't found anything that works except to let it run its course. Eventually it will pass. His current neurologist didn't want him on the "typical" meds for shortness of breath due to the fact that even in healthy people it causes them to be shaky. He has broken blood vessels in his face because of the violence of the episode and his blood pressure rising. Afterwards he is extremely exhausted like he?s run a marathon. Depending on the severity of the attack he?s also sweaty & look like he?s just run that marathon. He will sleep for hours after one of these attacks happen. My question is what really is the trigger? His doctors have yet to figure that one out. I have an appointment for him to see an endocrinologist though. Maybe he'll have some answers. His other docs, the cardio, the pulmonary, the primary, rhumetologist and his neurologist up to now haven't been able to find the answer.

Wish I had more that I could tell you. :(

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I get periodic episodes of uncontrollable shaking, but I'm not quite sure if this is what you are describing or not. As mentioned in a post above, it generally happens to me after eating one of my "no no" foods (sugar, eggs, pasta, etc), and coincides with nausea, diarrhea, and extreme anxiety which causes my HR and BP to skyrocket. It happens also when I'm overly nervous or if something scary happens, like a car accident or something.

It feels like tremours coming from the inside, almost like the shakes one would get if they had a bad flu, only stronger. It is not really controllable, but I find that if I don't panic and relax, then it subsides sooner. These episodes last from 30 minutes to several hours, and then I am exhausted. Is this the same sort of feeling, or am I way off here? LOL!! I never thought of it as seizure activity, it is more like shaking than convulsing- because I can get up and walk around when it's happening, and talk, etc . . . but it rarely happens anymore since I watch my diet a lot more carefully now.

I hope you find answers from your doc, and that it doesn't happen to you again. This stuff can be scary. Keep us posted!!

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no, it's more like what you would expect a seizure to be, except that i was conscious and aware. i definitely could not get up. i was lying on the floor while it was going on. every single part of my body was involved. arms, legs, everything. it was extremely violent, like, so that my legs were coming up off the floor, and i could hardly take a breath since all the muscles in my chest, neck and abdomen were constricting. i was gasping. even my facial muscles were going off. i'd say the worst of it lasted about 10 minutes, and all in all it was over within 1/2 an hour.

i'm starting to feel a bit more back to normal now. it's been about 48 hours. my mom, who works for a couple of resident hospital neurologists, was very upset when i told her about it (mostly because i didn't go the the hospital) and was very adamant that i talk to my docs a.s.a.p.

so, no worries. i definitely will, and will keep you posted if anything comes of it...

:(

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Justin - When I've had some of the bad episodes, I was unable to get up and walk around, my limbs were uncontrollably moving and I did feel seizure-like except for the fact that I was totally aware of what was going on.

However, I have also probably more episodes like Jessica's - where you just feel the shakes and slight tremors.

I had an event recorder during one of my violent events (this was before I had my diagnosis). My DH was on the phone with the cardiologist and he was reading the data we submitted. He said my HR was very high (didn't tell me and at that point I didn't even want to know), but that my rhythm was sinus and he couldn't see what could've caused it. We told him about the tremors/shaking whatever - and he said that was not cardiac-related. So I did follow through with MRI of the brain and neurologist, who found me to be normal (ha)!! I would do the same if I were you just to rule anything worse out, but more likely it is these nasty chemicals our bodies are putting out.

Good luck.

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i am so frustrated. the cardiologist said it was 'probably a bit of anxiety'. if anyone gives me that line one more time, i swear i am going to go postal on them. then he referred to my gp. my gp was more interested in what the cardiologist would say. of course! how #!*$@*$ predictable!

the only thing he suggested was doubling my atenolol dosage. i just don't see the point.

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I'm sorry you had to hear that once again. It's a shame the way these medical practices are run nowadays, we just don't get the attention we deserve. I would have told your doc straight up that it's NOT anxiety, and if he can't help you figure out what it is then you are taking your business elsewhere. I hope you get some answers soon!!

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Justin,

I have the exact same experiences as you do, and I cannot correlate any triggers other than they tend to occur mostly around the time of my period. They will come on unexpectedly when I am at my calmest state. I have even started taking my birth control pills without a placebo week, so that I don't have an "monthly", and that has helped decrease the frequency and legnth, but the episodes still come on and freak me out. I used to have heart rates of 190 sustained for hours and when I would goto the hospital, no medicine they gave me would control it. Now that I have controlled my period, I may get an episode that will last for about 30 minutes at a rate of 190. However, it still makes me feel as if I had ran a marathon.

I really feel that these episodes are hormone/endochrine related. For whatever reason your body reacts to release of hormones, adrenalin, catecholamines, I don't know. I wish I did. It scares me when I have these episodes, because I feel as if I am either going to pass out or even die. Not that I wish this on anyone, but I am glad to hear that other people experience these episodes, also.

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i guess, the thing that freaks me out about this particular time (or couple of times, since it has now happened twice) is that there are other (new!) symptoms presenting themselves. this isn't the usual tachycardia that i used to experience. it's accompanied by this strange convulsions business, and a high BP. plus afterward i got headaches, neck and back pain, and nausea that lasted for a few hours.

it's not the same old, same old POTS thing for me. i got used to that.

i guess maybe the novelty of the new stuff hasn't worn off...heh

but it is nice to know others experience it, too. for sure. i totally agree.

and thanks.

justin

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Justin, is it possible that you might be able to find a new doctor who is more knowledgeable about his area of medicine? Not sure what your situation is--I've had a few really horrible cardiologists, who I only went to for one or two visits. I now have one who's not an expert, but will call an expert in a blink if he needs to (i.e. will call Dr. Grubb, Dr. Low, Dr. Rowe, etc.).

Nina

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Justin, I agree with Nina. You definitely need to find a doc who has some knowledge about POTS and will believe you when you tell him this bizarre things are happening!!

GRRRRRRRRRR!!! I could go on a real tangent about docs passing things off as anxiety, but I will spare everyone this time!! lol

I also seem to experience these things more frequently during my menstrual cycle. As you obviously don't have that problem, it could just be surges of adrenaline or other hormones that your body doesn't like, or just too much because you overdid, ate something that triggered you.

One thing I have learned since I've had this lovely syndrome is that POTS is very weird.

Stay Well!!

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