I don’t want to go into too much detail, but I had been to the Univ Of Mich hospital in Ann Arbor, MI for what at the time we had thought was NMS (Neuroleptic Malignant Syndrome), later confirmed by a neurologist as not NMS. In short terms, my body had started to VERY violently shake and my Heartrate may have been higher even, but my mother and the attending doctor had confirmed from the heart machine that I had a pulse of “well over 220 beats per minute”. I have had several “attacks” as such, and required massive amounts of IV Ativan and sometimes IV Haldol to lower my heartrate to an acceptable 120-140 or so. The question I am wondering is this: I have heard that the acceptable “Max Rate” is as such: 220 minus my age, which is 24. So knowing that, my acceptable Max should have been below 200. I have been treated for this multiple times and I have been told if my body (esp. arms, legs) start to twitch at any time, especially while driving, to pull over IMMEDIATELY, call 911 and they must treat with massive benzos (I think it’s always Ativan) I received 15-20Mg of Valium a few days ago when it last happened while on the way to the hospital and as told by the EMS, “It did nothing”. I am very worried about this as I know that you can either flatline or have bad heart failure requiring paddles. I’ve never gotten to the point of needing a shock, but the hospitals I’ve been to have basically flooded my system with so much Ativan, sometimes Haldol, and I think other benzos in IV form that I have never had failure. If this “seizure-like” symptoms keep happening, is there anything I can do “on-the-spot” to even slow down the process of what happens? I did not ask because I figured that Injectable Ativan was for In-hospital use only. But I’m also wondering what should I do if I am either driving or am somewhere not very close to a hospital? I generally had transport times of maybe 10-15 minutes to total Ativan Injection. The first time I was with friends and they thought I was just messing around, but I have not heard from a single doctor that said it was NOT a VERY serious issue, and was told that upon the slightest sensation on twitching, jerking, etc, to call 911 and tell them I need transport immediately and if possible to tell them I need injections of Ativan (don’t ask me why valium doesn’t work, I don’t know) as soon as possible. As far as I know the ALS EMS only carries IV Valium which did NOT work for me. When I went by ambulance a few days ago, my heartrate I believe (since caught very early by my aunt who called 911) jumped from about 120-140 up to at least 180 in the ambulance EVEN after they had injected IV Valium. I started out with an above average BPM, and the Valium seemed to cause the uncontrollable jerking, spasming, shaking to worsen WAY worse and they had given me I think like 15Mg, also before ALS arrived, my aunt administered a 1/2 tablet of 10Mg Valium (so 5Mg). I have so many questions that still remain unanswered, but I am so worried about it that I have even broken down in tears just trying to explain my “attacks” to people. I have also been told to keep plenty of Valium (even though it seems to worsen conditions) 10Mg tablets in my car with me at all times. I have never flatlined, but recall that at 1 hospital they had a crash cart ready for me, and the 1 I just got out of, they had me in the resuscitation room, I remembered seeing probably close to 20 people around ( Apparently they had cardiac equipment on hand and they had Cardiac doctors there, a couple other doctors, a few nurses, nurse aides, Respiratory Therapists, Surgeons, etc. all watching me and waiting to make sure everything went smoothly) I also when having an attack, at the beginning start stuttering just about every word I say and saying my sentences multiple times. Then it seems to progress into light to moderate shaking ( at my aunt’s house a few days ago I was shaking my hands on the table so much that the table started to rock and the stuff on it started vibrating) I also generally after the shaking starts cannot verbalize anything but sometimes I can respond by shaking my head yes or no to simple questions by like paramedics. Another thing, although I have had high stress and anxiety for a while, the attacks seem to occur around the times I am most upset or stressed. While at my aunt’s house before I started shaking, also I broke down to tears and was trying to talk not very well because I was crying so hysterically I could not talk. I would like to know if anyone knows what this could be (maybe someone here knows more than the doctors I saw) and whether there is any way to totally stop it. It is VERY SCARY and seems to be VERY dangerous also. I have since being discharged today, been told I am not allowed to operate a car or any kind of vehicle and/or machinery. I am mainly worried that one day I will have an attack and noone will be around. The attack at my aunt’s house almost could have cost me and/or someone else

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Filed under: Advice for a Broken Heart

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