Chrissy Posted April 15, 2011 Report Share Posted April 15, 2011 So after 5 months of progressive tremors/movement disorder and no doctor wants to get involved to help relieve my discomfort, last night I ended up in the ER. We think it was caused by over stimulation from going to a 1 hr wellness information meeting. Between the florescent lighting, crowded/ noisy environment, traffic outside, "strobe light" effect from the projector. I had a mild event while there, a second mild event at dinner. Then around 11:30 pm, while trying to go to sleep I began jerking, sniffing, and shivering. After 5 minutes of no releif I sat up, turned on my light, and video taped the event with my cellphone (the doctors requested videos of the events so they can see for themselves.) I then laid back down to relax again, but it was getting worse. I then went in to my parents room and they tried calming me down, holding me down during the bad episodes, and videoing with the cellphone. 20 minutes later we decided to go to the ER, because it didn't seem to be stopping. It would slow down for awhile, then get violent again. I had a major event in the ER and the nurse and doctor came in, they seemed freaked, but more concerned with slowing my breathing (they say hyperventalation, I say lung convulsions). They gave me a shot to calm me down, that was supposed to help in 20 minutes, I was still moving uncontrollably. They discharged me with PANIC ATTACKS, didn't even mention tremors. They didn't even try to control the movements and from all my research into panic attacks, it doesn't include violent movements. I guess as long as I'm breathing or conscience, I should avoid ERs. Quote Link to comment Share on other sites More sharing options...
kclynn Posted April 15, 2011 Report Share Posted April 15, 2011 Chrissy,We had a similiar experience. We had sworn off ERs as not helpful but a couple months ago my son was having major jerking that was stronger than before (he was laying on the ground and though we put him on a pillow his head came off and was slamming the ground). We panicked and took him in. Actually called the ambulance because we couldn't see getting him in a car. By they time they got to the hospital the worst was over and they released him 7 hours later with Myoclonic Jerks. No help at all. This has come up recently on another thread. Do you have a POTS Dr? If not you need one and if you do then you need to ask them what to do in that situation. You say the Dr. want you to video tape and that is good. Have you shown them and what did they say? Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted April 15, 2011 Report Share Posted April 15, 2011 Oh my gosh Chrissy, I am SO sorry. The panic attack diagnosis is just plain insulting! Have they given you an EEG - maybe it's seizure related? There has got to be a neurologist that can help you or at least properly diagnose you. You were so smart to video the event. Quote Link to comment Share on other sites More sharing options...
Chrissy Posted April 15, 2011 Author Report Share Posted April 15, 2011 I have a Pots doctor, who is on the "Dinet doctor list", but she only wants to deal with my heart and chronic fatigue symptoms. She mentioned at our last appt. last year that it may be time to go to Vanderbilt for more extensive research then rescheduled the appt I was supposed to have yesterday with her for a month from now. I have a consult with a "wellness doctor" on monday to see if a natural approach will help any of my unexplained symptoms.Since being told we needed to video the events, we haven't had a chance. Either more concerned with making sure I was safe or it didn't last long enough to get the cellphone ready to record. Then me, my mom, and my dad took various recordings last night and none of them were much to look at. Too close to face, shadows, no sound. It is so much more intense in person than any camera can record. Quote Link to comment Share on other sites More sharing options...
delphicdragon Posted April 16, 2011 Report Share Posted April 16, 2011 Chrissy-So sorry you're going through this. My jerking/ tremors/ seizures is actually what ultimately lead to my diagnosis -- surprisingly the ER in MA had a competent neurologist resident on staff who did orthostatics and that's how I wound up diagnosed with POTS. I'm so sorry you got the diagnosis of panic attacks. That's not what these are! Though, I have found they are related to stress (too much stimulation, not enough of the right types of food, etc) I know that these episodes occur when my blood pressure bottoms out. The EMTs who saw me couldn't get a bp reading and assumed their cuff was broken. It wasn't! Things that have helped ease these tremors are getting enough sleep, less stress, eating regularly (all the typical stuff that helps). Pure salt or pure sugar can bring me out of these attacks. I thought I was hypoglycemic initially but according to the doctors my blood glucose isn't low enough to cause symptoms. :-? Still, sugar helps, so I put a teaspoon of sugar under my tongue and wait. That sometimes can thwart the attacks. Elevating my feet above my head also stops them within a minute or so. Though it's not always easy to get my feet up when I'm twitching like that.Good luck in finding a doctor who gets it. Most ER doctors are great for trauma but have no idea what to do with chronic cases. I tend to only go to the ER if I think they can "fix" it. Orthopedic issues, serious illness, things like that. I've only gone to the ER with POTS once -- pulse of 160 laying down. I would have been diagnosed with panic attacks too, if my cardiologist hadn't intervened, explained what POTS was and insisted they do blood work. Apparently potassium levels in the toilet will cause tachycardia too. Sigh. Feel better! I've found these tremors do get better. Used to happen 2-3 times a week. Now it's maybe once a month, if that, and doesn't last nearly as long.Sara Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted April 16, 2011 Report Share Posted April 16, 2011 sorry to hear this happened to you. I can't believe they diagnosed this as a panic attack. I wonder what purpose that serves ? FWIW .. I'd still go to the ER if I had trouble breathing or had a lengthy seizure. It's interesting how many of us do this ... I've had nocturnal myoclonus (jerking when entering REM) since 1990 when I came down with CFS but had my first 2 hour event on March 8th. I've actually had black outs and petite mals since I was 2 years old though. I "think" my 2 hour seizure was from a combo of things including gluten cross contamination, only getting 4 hours of sleep and having to run a doctor's appt, taking small amounts of Benadryl and Claritin even though I knew they were affecting my balance and drinking 2 cups of coffee that morning. I was normally only drinking some really weak coffee but couldn't wake up so I drank a strong cup + a 2nd cup. Oh and I'm not even sure if the second cup was GF ... It's funny ... flickering lights don't bother me. HTH ... dizzyI have a consult with a "wellness doctor" on monday to see if a natural approach will help any of my unexplained symptoms.Great idea ... make sure you're tested for food intolerances, nutritional and hormone deficiencies, dysbiosis and get a GTT + insulin since so many of us have low blood glucose ...there's probably more but that's all I can think of ... but these are the biggies and easiest to treat. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted April 16, 2011 Report Share Posted April 16, 2011 Hi Sara,I noticed that salt and / or sugar help me with minor trembling but not my last major seizure. I wonder what the connection is ... especially since many of us have to salt load to keep our BPs up and many of us have low blood glucose ...I keep hearing that my blood glucose isn't low enough either to produce these symptoms but I'm needle phobic and suspect that everytime they go to take my blood, my adrenals are boosting my blood glucose levels so I can make a run for it ... They always have to tell me to relax ... My hypoglycemia DID show up when they did the GTT though ... dizzyPS. In case anyone's interested ... I was successfully using orange juice, caffiene and some salt to keep me upright so I could run errands but just got off the caffeine ... Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 19, 2011 Report Share Posted April 19, 2011 Look familiar? Quote Link to comment Share on other sites More sharing options...
Chrissy Posted April 23, 2011 Author Report Share Posted April 23, 2011 Yes that looks very familiar. Fortunately it hasn't spread to my legs yet, but every attack since September seems to get more violent and progress further through my body. Starting in my head with sniffing sound, then including my stomach up, now I feel like my lungs are seizing if that makes since. My last episode was 45 minutes on and off. Which I had to clarify to my wellness doctor if I said 45 or 4-5. He was really concerned. Fortunately my mom managed to record a major episode in the ER, but with a cellphone the quality is not too good. But the wellness guy was very intrigued and requested me to bring in all my medical records (since I had them already) and he's gonna review them with his team. He has a group of doctors with various specialties that sit down and discuss the complicated cases, he said it is alot like the tv show house.Ramakentesh did you ever get an answer from the doctors as to what it is or what might be causing it? Quote Link to comment Share on other sites More sharing options...
kclynn Posted April 23, 2011 Report Share Posted April 23, 2011 Chrissy, keep us updated. Really interested in what your wellness Dr. opinion is. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 23, 2011 Report Share Posted April 23, 2011 Yes - autonomic storm was the term used. Quote Link to comment Share on other sites More sharing options...
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