Question: Pain level of 10. Virtually every muscle cramped. Head movement only for 15 hours. Four day hospital stay. No diagnosis, again. Having episodes, lesser than this one, since 1990. Usually only upper body effected. Sometimes nitro will make the lesser ones go away. Pain is ALWAYS happening on both sides of my body at the same time. Never one side or area only. Have gone as long as 2 years without an episode, but have had as many as 6 lesser ones in a day.

Don't know what happened to my previous message. I typed it on the space for additional questions and clicked submit. Let's try it again. I do wish that we could talk directly because I am quite sure that you are going to have more questions after you receive this. First, in question number 4, what is fasciculations? There is no such word in my computer's dictionary.

1. I used the word episodes as opposed to attacks or seizure, not knowing which word to use. The duration is pretty much different depending on the severity. I have gone as long as 2 years without having any, but also have had as many a six in one day. I am totally normal in between without any residual affects at all once the episode has ended.

2. By using the word lesser, I mean an episode that I can control by taking a nitro pill, immediately, and the symptoms subside after 10 minutes or so. The major ones keep building and building, unaffected by the nitro, and I have to go to the ER.

3. No, I do not have a history of tingling, numbness or weakness in my extremities.

4. Need a definition of fasciculations.

5. Some how, from my initial message, you got the impression that the head movements were involuntary. They were not. My head was the only thing I cold move voluntarily.

Summarization: Having had this condition for 25 years I have, with every episode, tried to find a common connection or reason. Diet, emotions, stress and physical activities, etc. I have never found any commonality.

Except for the last two episodes, they have ALWAYS started with a dull sensation, on both left and right sides, slightly above my shoulder blades and about 6 inches on either side of my spine. The last two have started in my chest, both sides again. Initially it feels like a very low voltage shock or numbness and radiates down to my elbows and to about 5 or 6 inches below my breasts. It goes up to my neck, but rarely into my head. My upper arms are totally useless, but my lower arms were never affected except for the last attack. At this point the pain has magnified into yelling and screaming and walking around tying to find a position that lessens the pain or maybe hoping I can walk it off. When the ambulance arrived and they had done their initial assessment, BP, HR, etc., I walked down the stairs, on my own, and laid on their gurney. By the time we had gone only about 3 blocks, they had given me the first morphine shot. No effect. I believe they had given me another before we reached the hospital. By the time we reached the hospital, about 8 minutes maximum, I had also lost movement of my lower body. This is the first time my lower body was effected in any way. I could not help at all when they moved me from the gurney to the bed in the ER. The pain was still a 10. The pain is constant, it does not come and go. I was experiencing nausea, which I had not experienced during previous episodes. The total lack of movement continued through the night and into the next day sometime. I don't recall when the pain subsided or what other, if any, medication I received for the pain or if it went away on its own. On the second day I was able to sit on the edge of the bed and eventually walk with the assistance of a walker and a nurse holding on to a gait belt. I quickly progressed to not having to use the walker or assistance.When I left the hospital, after a four day stay of doing the usual tests, I had neck pain which I had not experienced with the previous episodes and feeling very weak. The following week I had a previously made appointment for a quarterly interrogation of my pace maker. For the time I spent in the hospital, it showed no unusual heart activity. It never has.

Should you desire the transcripts of my experience I will be willing to get them to you or give you permission to obtain them. Again, I feel you will have additional questions and think valuable time could be saved by talking on the phone.

Early morning, after 6 AM, is the best time. Other than that, I am in and out. Thank you

Once again I have sent a reply and it will not go back to you on the form you are sending. Firstly, I have gone to the hospital and got the records you requested. I need a fax number to send them. As to the use of nitro, at the conclusion of an appointment with a neurologist, he said he had no idea as to what was causing my problem, but thought it may be vascular. My wife, who was an RN at the time, asked why we could not try nitro in as much as it is used to expand vessels. He said to go ahead and try it and that it would not hurt me. This was approx. 6 years ago. It has kept me out of the ER and hospital many times. During my last hospital stay, my cardiologist, visited me to tell me "XXXX, it is not your heart." You also mentioned my talking to moderators about a possible phone conversation with you. Who are they and how do I contact them? Thanks again for the immediate attention you have given me

We have uploaded reports to you on this site. You will notice a lot of cervical spine problems, but, those were not there when these episodes started. Also, we may be out of touch for a few days. Internet & wireless can be spotty in XXXXXXX You will note several meds on this record. I was never on any meds until approx. 2009. Thank you for all your help.

1. My urinary problems have been gradually increasing, over a 2 or 3 year period, to the point where when I first feel I need to urinate, I need to start looking for a place to go. If I wait too long, I do start to dribble off and on until I can relieve myself. A few times I have had to change clothing. At times when I feel like I have to go really bad, I end up urinating very little. After the recent hospital admission, the retention lasted approx. 10 days to 2 weeks. We straight cathed once a day before bed to check for retained urine. The amounts started with residuals of 4-500 ccs. This gradually decreased to approx. 100ccs after 10 to12 days. I am no longer straight cathing and seem to be voiding in my normal pattern which does include the above description. I never had incontinence after the hospitalization, just retention.

2. After 48 hours I could walk independently, but felt unsteady and had some overall weakness for approx. one week. I still have days when I feel extremely weak, but am wondering if that is a side effect of the Nifedipine and magnesium. Use of my upper and lower limbs is back to nearly normal

3. I have never had sweating or palpitations with any of these episodes. The last episode that ended up with hospitalization, I was very worried and dreading what I knew I was going to experience, but I would not call it anxiety.

4. Usually when I take the nitro, the episode will resolve in a very few minutes and does not return. There have been a few time when I would have another episode within 6 or 7 minutes and must repeat the nitro. I have had 2 instances when I had multiple recurrences within approx. one hour. None of these were severe and resolved rather quickly. On one of these, I had 3 occurrences and 6 on the other. In Feb. of 2014 I was hospitalized with a TIA. This was the morning after one of these multiple occurrences and there were no lasting effects from the TIA. This is the only TIA I have ever had.

Sorry for the delay in answering, but we were in an area without internet coverage and returned early to answer you. We have to leave again shortly and will not be returning until late Tuesday or early Wed.
Thank you again for your continued attention. XXXXX