persephone Posted November 12, 2005 Report Share Posted November 12, 2005 1) I never used to wake up with a tachy- it only used to happen when I got up and moved about, but just now I'm waking up like there's a hummingbird in my ribs! It feels like the bed is shaking my heart is beating so hard and fast!!! Just wondered if many of you get this?2) Anoxic seizures- do any of you experience this? I used to occasionally tremble a bit but lately, as my POTS has been completely off the clock, Ive been told that when I shake it looks identical to an epileptic fit. My GP here in Oxford says this is an anoxic seizure, which someone vaguely mentioned to me a while ago (I was probably feeling rubbish when they said it which is why I can't remember it so well now!). Apparently it means that brain isn't getting blood/oxygen so the limbs shake? I thought this only happened with cardiac arrests- so is it possible I'm actually arresting when I have one of these episodes? These really bad fits happen so rarely that no one has ever monitored my pulse while this happened... and in my TTT they stopped before I lost consciousness . I wanted them to keep going to see what happened to my heart when I lost consciousness, but they wouldn't, which was kind on my body but not on my peace of mind! what if my heart actually IS stopping when I pass out, and we don't know?! Anyone with advice/feedback...please chime in K x x Quote Link to comment Share on other sites More sharing options...
Gena Posted November 12, 2005 Report Share Posted November 12, 2005 Hi there. I posted recntly on another thread about getting tachy when sitting, but just to repeat, yes I get tach upon waking when I'm lying down, especially if it's in the middle of the night or wee hours of the a.m. It doesn't happen everyday, but lately it's been happenning more often.I also get the shakes/tremors in my whole body (not sure if it's the same as what you experience). I never knew what purpose these shaking episodes served and I've never heard of anoxic seizures. I think most of us call them adrenaline surges/rushes. I was just at Mayo seeing the cardio doc yesterday. I should have asked him about these. I think I will make a separate post about this question.Interesting to hear your doctor's view point about the shaking thing being a reaction to get the blood to the brain. I always thought it was the body's way of getting rid of the excess adrenaline that it released in the body. Hmmm, very interesting. Gena Quote Link to comment Share on other sites More sharing options...
Lukkychrm42 Posted November 12, 2005 Report Share Posted November 12, 2005 Hey Perse-I get the first one, but not the anoxic seizures... Whenever I wake up, my HR just skyrockets- and then it settles down usually until I stand up, but sometimes if I wake up in the middle of the night (which happens all the time), I have to take more propranolol just to be able to get my HR calmed down enough to sleep again. It's frustrating! Dunno about the seizures though.. hope you find out what's going on soon, though! Quote Link to comment Share on other sites More sharing options...
mom4cem Posted November 12, 2005 Report Share Posted November 12, 2005 I wake with tachy also and by the time I get up and move it is flying. I've never had the the seizure though but I do have the shakes and trembles. Quote Link to comment Share on other sites More sharing options...
morgan617 Posted November 12, 2005 Report Share Posted November 12, 2005 I can have really bad tremors and shakes with my paralysis episodes. I have tremors a lot, but fine tremors as opposed to the more significant ones during my episodes.I was evaluated for over 24 hours in an in hospital setting to rule out seizures. I had 10 episodes, I think because they wouldn't leave me alone. The more I had the more they bugged me just causing a massive cycle of overstimulation. The over stimulation caused more episodes. It was awful. They would come in and drop my arms and hands into my face, yell at me, stick things in my face, order me to talk, it was pretty gruesome. And I had about 56 electrodes glued to my head, a camera focused on me, a microphone above my head, and a catheter that was driving me crazy. I ended up getting a UTI from that.The doctor told them to stand outside my door and say loud enough for me to hear that I wasn't doing anything, there was nothing wrong with me. He then told them to completely ignore me. I had six episodes after this. 4 on top of each other, and two more that evening.The next morning, he came in and said I had no seizure acticity and therefore I have conversion disorder and somatization. He said when the nurses stopped paying attention, I stopped having episodes. UH DUH, I had 6 after the nurses left me alone.So He said I don't have seizures and therefore everything, the tremors, bp swings, pulse fluctuations, flushing, ice cold feet and hands, abnormal labs, paralysis, EVERYTHING is psychogenic, based on the fact I don't have seizures.So I guess we don't really have seizures in the technical sense, but we sure as heck don't all have somatization and conversion either. If you get tested to rule them out, be careful. You may even be getting psychogenic blue eyes....morgan Quote Link to comment Share on other sites More sharing options...
persephone Posted November 12, 2005 Author Report Share Posted November 12, 2005 Errr....my GP said nothing about psychogenic stuff. He said it's a lack of oxygen getting to my brain, causing my arms and legs to thrash and wobble. It's a recognised condition over here- have a look at www.stars.org.uk-run by the Syncope and Reflex Anoxic Seizure Trust. A reflex anoxic seizure wouldn't show any seizure activity in the brain- it isn't epilepsy (as far as my understanding goes). Have you mentioned RAS to these people in the US? Maybe you should!Also, the fact that my eyes go kind of black/grey underneath, and my colour changes and I go so cold would put paid to the whole psychogenic thing in my case, I should think.Hope you get it sorted out soon, Morgan--sounds like they're not getting to the root of the problem for you. I'm sure yours can't be psychogenic if you were that ill! Quote Link to comment Share on other sites More sharing options...
yogini Posted November 12, 2005 Report Share Posted November 12, 2005 I take my BB first thing in the morning, so it has worn off by the time I wake up. Most of the time I wake up feeling fine, but sometimes I am tachy in the I am.In the first week that I developed POTS I would up collapsing in the office and my body went into convulsions. I am certain this was in order to keep up my BP, because as soon as I got an IV in the ambulance, it went away. I think I have seen others on the board mention this. It happened to me once or twice since, but salt, fluids and compression hose are generally enough to keep up my BP. Quote Link to comment Share on other sites More sharing options...
morgan617 Posted November 12, 2005 Report Share Posted November 12, 2005 Interesting Pers, thanks. The weird thing is, a psychologist and a psychiatrist both said it's not psychogenic and the neurologist said they didn't know what they were talking about!!! He can diagnose it because he does at a minimum of once a week! Realize that statistically speaking, if 2-3 people out of 100,000 people have true conversion disorder, there would be approx only 2-3 people here in my town with it. So he is diagnosing a minimum of 52 people a year with one of the rarest mental health disorders there is....very scary!! A full 30% of people dignosed with conversion are MIS diagnosed. The problem here is that this is a permanent record. I hate that....morgan Quote Link to comment Share on other sites More sharing options...
persephone Posted November 12, 2005 Author Report Share Posted November 12, 2005 Yep, I know what you mean about convulszing due to low bp- this happened to me in my last tilt, even though I was conscious--my body went haywire, especially on the right side Quote Link to comment Share on other sites More sharing options...
briarrose Posted November 12, 2005 Report Share Posted November 12, 2005 I hadn't heard anoxic either but looked it uphttp://www.webmd.com/hw/epilepsy/shc29ras.aspSTARShttp://www.stars.org.uk/ Quote Link to comment Share on other sites More sharing options...
Evie Posted November 13, 2005 Report Share Posted November 13, 2005 So Persephone you are getting fit like shakes while you are standing? not while you are fainting or paralysed on the ground? sorry i just was not sure from reading your post. I get them when i faint and like your dr said i thought it was due to lack of blood flow. Or sometimes i can get them while standing if i am fighting to keep walking and not hitting the ground. Its a horrible feeling, sorry to hear that you are experiencing it so much lately. I am conscious when it happens too. I have not got any advice to give to avoid the shakes unfortunately, other than to say i dont think it harms the heart or anything that drastic, however bug your dr and let me know if there are risks like that as it would be quite scary if that was the case I went to the pyschiatrist for the first time ever last week, he is meant to be good with pain/symtom management and dealing with the emotions of chronic illness... he measured my heart rate and said it was all over the shop. I had thought that my heart rate was super and i was always grateful for that heh. Can you get tachycardia without feeling it? its when your heart rate goes really quickly isnt it? yet you feel a banging in your chest? Anyway he is going to meausre me next time and work out if its only when im upset or all the time (my mum told me that my pulse is all over the shop most of the time)... He is going to teach me some breathing techniques to help control the heart rate. Im not sure if it will be successful or not, just thought i would let you know that maybe there is a way to try and control the tachycardia that isnt medication alone. Quote Link to comment Share on other sites More sharing options...
morgan617 Posted November 13, 2005 Report Share Posted November 13, 2005 Evie, my heart can be clipping along at 130 or so and I don't feel it, I just feel tired. It's when it's pounding that I notice it. Or when it's in the 60's I get really light headed, so then I know it's slow. So it can be fast and I won't notice, but slower and bounding and it's awful, or slow and I felt cruddy too. Does that make sense. So I guess it's not the rate, unless it's too slow for me, it's the force of the beating...morgan Quote Link to comment Share on other sites More sharing options...
Evie Posted November 13, 2005 Report Share Posted November 13, 2005 Oh ok thanks morgan, i think i understand The banging sensation sounds really horrible. I think i may have experienced it when running long distance when i was younger ... its almost like your heart is beating in your head and chest at the same time? Or maybe i have never experienced it at all heh. The psychiatrist said the when your heart rate is high it can cause you to feel like your running full speed on empty (i think of that buzzy feeling where it feels like i have had 20 cups of coffee and am about to crash). Because mine is irratic it could be responsible for making me feel bit all over the shop. It may not be related to tachycardia.... i will let you guys know in the following months how the treatment goes anyway, it may be helpful to someone out there I just need to work out what box to put the treatment under so i can let the right people on here know about it. Quote Link to comment Share on other sites More sharing options...
mariancollins Posted November 13, 2005 Report Share Posted November 13, 2005 Hello Persephone, I am up in the night having woken, as usual in the last few months, with tachycardia. I have always been somewhat prone to this, partly due to anxiety disorder which is now well under control. (I'm generally a very calm person). My GP is at a loss as the beta blocker doesn't seem to be working, and I am waiting for a 24/48 hour heart monitor test before I try some other BBs. I find the best thing is to get up for about an hour and just take some pleasant distraction, otherwise I just keep going through that whole roller coaster tachy thing. Taking valerian and hops seems to help a bit, but DON'T because you are obviously hyper-sensitive.Please excuse me the liberty of sending you a personal message too, telling you a little bit about myself as you were asking, and asking you for a bit of advice. Regards, Marian Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted November 13, 2005 Report Share Posted November 13, 2005 Pers, if you're concerned about what your heart is doing when your convulsing, you can always ask your doctor for an event recorder, or a holter monitor, which would register any heart rythmn problems.Nina Quote Link to comment Share on other sites More sharing options...
morgan617 Posted November 13, 2005 Report Share Posted November 13, 2005 Evie, when my heart is bounding, I feel it in my throat, right eye, head and stomach. It's really the only time I feel true nausea. It is just so awful. The only person who ever mentioned it was a paramedic, taking my bp the first time I fainted. He said it felt like my arm was going to explode from the force of my bp and he didn't even think he needed a stethescope as he thought every one would be able to hear my heart. At least he acknoweledged it......(sp) morgan Quote Link to comment Share on other sites More sharing options...
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