8 replies to this topic

[cprahl]

My name is Chuck, I'm T6 para for last 45 years. Last winter I had spasms so bad they made it hard to breath, My doctor upon seeing a slight rise in my white blood count put me on antibiotics and within 3 days I felt better. For the next 7 months I was fine then in September I began to have similar problems and went back on antibiotics but didn't get immediate relief like before it came and went until December when I had spasms so bad that within 10-20 minutes I couldn't breath and literally thought I was going to die in my wheelchair. The spasms were deep in center of abdomen and were rapid but what made these so different is that when the spasm would contract the muscles I literally couldn't breath. As the spasms got worse they literally cut my breathing off until after 20 min I had a spasm so bad I couldn't get in anymore air and felt like my body was seizing from no air, the fear was unreal because you saw your life passing away and just before i passed out the spasm
ended and I could breath again. This happened 4 times within 7 days and happened the same way lasting 20-30 min and slowly limiting my lungs from taking in air. I thought I may of had some acute problem in my bowels or somewhere causing an autonomic pain reaction to these spasms. I have had spasms for years but now because of something wrong in my body made them so much more worse and I felt like i was dying. I called 911 3 times and went to ER once. I pray someone understands or can relate to this.
Have still issues of the abdomen related breathing problems 3 weeks after incident.

Edited by cprahl, 27 December 2010 - 11:49 AM.

[goldnucs]

I've been having the same problem for about 5 yrs. I've suffocated twice and, obviously, been revived, once though I ended up aspirating [inhaling] my vomit and ending up in the hospital for a week with aspiration pneumonia. My very first one, which also ended with an ambulance ride to a hospital in Mexico was so bad that a retired EMT pronounced me dead. My wife literally pounded me back to life. I didn't breathe for at least 3 minutes or more.

You are the only other person who I have ever heard having had a similar problem. In my case, my abdominals get so rock hard that it turns my quad belly into a six-pack; looks great but I can't breathe; truly the most frightening thing I've ever experienced. I've seen a cardiologist, pulmonologist, neurologist, internist, none of whom could provide any explanation. I keep a journal of the "events", scoring them from 1 to 10, 1 being minor, anything over 5, affecting my breathing and 8-10 being of suffocating force. Typically they only occurred upon getting out of bed in the morning, but over time, they've hit me at other times of the day. I've been able to correlate dehydration (often after a night of alcohol, UTI's and sitting in one position for an extended period of time.

The miracle cure for me is gabapentin (neurontin) which I chew 1/2 a pill (300 mg) the moment I feel a seizure coming on. It tastes horrible but begins to release my spasm within less than a minute. I also take 1200 mg before I get out of bed, 900mg at 2pm and another 900mg before bedtime.

[cprahl]

Sir,
I can't believe I found someone with same exact problem. Did your come on slow like with me. I had extreme fatigue last winter for for like 45 days until I was put on cipro and was normal for 7 months until the fatigue came back. It was the same for me getting out of bed caused the extreme fatigue early in the morning. Why would this happen do you have an urinary ostomy ? I do. That is what I have asked doctors something to take to stop the spasm imediately. I had 4 episodes in 1 week back in early December. Haven't had any since other then days with extreme fatigue. Spasms scare me now and I fear doing things. Have doctors told you anything to help out. What other things about you. I have to use enemas to make bowels work. Last time using them set off the breath stopping spasms.

Edited by cprahl, 26 December 2010 - 10:33 PM.

[Tetracyclone]

Spasms sometimes make it hard for me to breath, but you guys have given me a new perspective. now mine are nothing.

[MTB John]

Mine are not nearly as severe. They stop me breathing but only last 20 seconds at the most. I spoke to my Physio who said to stretch them, all that sitting causes them to shrink. Just lying on your stomach is enough. I try to sleep on my stomach but find it quite uncomfortable. Not sure if it will help you but it will not cost anything to try..

J

[cprahl]

Thanks Very much but the way it came our of the blue I think there was something else going on. But I will try what you said any
thing will help.
Chuck

[Smileyblue]

Unfortunately I can't be of any help. I do experience similar spasms, but as a para, not nearly as frightening as yours! I have spasms that squeeze my stomach contents out, and as Tetra said, make it hard for me to breathe, but I have never experienced complete suffocation from them.. I can only imagine your fear when that happens! I hope you find some relief ASAP! ;-)

[nomis]

Hi Chuck

I may be worthwhile to check out what is happening with your bladder. Over the years the walls can thicken, lessening the amount of urine it can hold and triggering spasms through the abdominal area.

I used to have a lot of tension around the mid-area, giving a fit looking figure as goldnucs mentions, and sometimes grabbing so tight it briefly blocked me from breathing. The poor performance of my bladder causing kidney pressure led to a bladder augmentation where they patch in a bit of colon to the bladder wall to make it larger. Now, with no pressure from the bladder, I almost never notice abdominal spasm and I've now got a conventional parapot.

Edited by nomis, 27 December 2010 - 11:25 PM.

[goldnucs]

That's a very interesting thought Nomis. It sounds like an comprehensive urological work-up would be required (was required?) to diagnose this. I remember that these were routine and recommended every 'x' number of years following my accident in '78. I remember there was an IVP and cystometrics, among others, all of which have probably been replaced with something else by now, but matters not because you probably need to be near death or have only the best health plan to be approved for such tests.

Nevertheless, it is an intriguing thought and I am going to present it to my urologist and see what he has to say. Probably a plan for you as well Chuck (cprahl). One thing that I can agree with my neurologist on is that our bodies, like anyone elses', undergo significant changes over many years. The big problem, as Chuck and I discussed, is the lack of any database for SCI's, which would certainly be helpful in figuring some of this shit out. Nowhere is there even any realistic census data on our numbers. I think that the only decent source of information is here and in the CureCare forums.