Sensitivity to anesthesia and sedative type meds

Hi all,

I hope that folks are having a good beginning to 2015. So far, mine is uneventful but that's all a matter of perspective, isn't it?

I'm wondering whether other people with Chiari have terrible reactions to anesthesias and other similar drugs.

On December 26th, I went into the hospital for an outpatient angiogram to check whether head position and blood supply to the brain might be causing these terrible episodes that I keep having. They used a combination of Vercid and Fentanyl to keep me sedated but lucid enough to change head positions while they ran the test.

Six hours after I woke up from the procedure, I had to be admitted to the hospital because I kept going unconscious. Between passing out, my I had a burning headache and absolutely intolerable nausea. I could barely speak. But, my vitals were all normal.

That night, I passed out again. It went like this: huge wave of nausea and feeling of passing out, called nurse, vitals normal. Two minutes later, I was out. The nurses came rushing in and - for the first time ever - medical people saw one of my episodes.

I was covered in sweat (pouring off of my earlobes). BP was 60/40. Pulse was around 120. The nurses administered oxygen and kept hitting me in the chest until I came around (about five minutes).

After this, they moved me to a floor with heart monitors. I stayed in until Tuesday and they ran a bunch of tests (echo cardio gram, 24 hour EEG, stress test, labs). Nothing showed up on any of them. They hooked me up to a 30 day cardiac event monitor and I'm home, resting.

The up side of all of this is that I now have an episode with objective info and medical witness. They are taking this very seriously, which is a relief after all the "are you taking illicit drugs" responses to my visits to the ER.

I have had several of these episodes that are unrelated to any sedative. But, I also am usually intolerably ill after any surgery and generally bed ridden for up to two weeks after any procedure that requires these meds (colonoscopy, endoscopy…)

I guess at the end of this, I have two questions:

1) Does Chiari cause this kind of sensitivity to sedative?

2) What the heck are these episodes? They are increasing in severity and frequency. Seem to be particularly worse since the C4-C7 fusion in June.

The doctors are basically ignoring the Chiari because mine is so small. They are talking about sending me to a neurologist who specializes in the autonomic nervous system. I'm seeing my GP on Monday so any thoughts that will help me bring good questions to the table would be very much appreciated.

Thank you all!

Asan, how scary…did you at least get any answers from that test? I’ve read that drug sensitivity is common with EDS, I am sensitive and becone intolerant to meds very quickl. I can’t remember if we’ve talked about EDS and dysautononia too. Do you have a type of dysautonomia? Don’t know if it could be a combination of drug sensitivity and dysautonomia symptoms. I’m so sorry you are dealing with this…also so glad you are being watched so closely.

Jenn

Oh my goodness! That is crazy scary! I would definitely see your NL! No matter the SIZE of the herniation, it can still cause symptoms, but dysautonomia sounds like a very likely culprit. I've never had problems with high-powered sedatives, only the OTC ones like Benadryl and Codeine. I have an "adverse" reaction with most medications. Medications that normally make people sleep, make me hyper and the other way around. I actually take an "upper" to sleep. Still ruling out dysautonomia and EDS here though. It's not a quick process by any means. I would try to confer with your anesthesiologist BEFORE your surgery in June. You should meet with him/her pre-op and talk about it!

Thank you all for your help and suggestions and support...

This response I have to sedatives is pretty extreme so I had wondered if it could be connected with Chiari or not.

I will definitely look into the dysautonomia. I've peeked at it before but not completely. Sometimes it feels like all I do is learn anatomy by looking up things as problems arise. This is exactly how I learned to fix cars when I was a kid.

The neurologist who saw me in the hospital suggested I see a special neurologist who specializes in the autonomic nervous system. Thoughts on that?

Sadly, no answers from the angiogram at all. We had hoped that these bad spells were some kind of vascular restriction (which is easy to fix) but my blood flow is perfect. All I have to show for it is bad bruising at the entry site and a four day hospital bill. But, I did get to check out my heart and know that it is strong enough for exercise once I feel up to it, which I hope is soon. That made me feel positive.

jcdemar said:

Asan, how scary...did you at least get any answers from that test? I've read that drug sensitivity is common with EDS, I am sensitive and becone intolerant to meds very quickl. I can't remember if we've talked about EDS and dysautononia too. Do you have a type of dysautonomia? Don't know if it could be a combination of drug sensitivity and dysautonomia symptoms. I'm so sorry you are dealing with this...also so glad you are being watched so closely.

Jenn

Huh, I remember when I was a kid my mother said I had that kind of reverse reaction to medications. Benedryl made me incredibly hyper active. She always figured it was because I was ADHD. Interesting. Thanks for sharing that.

BestFriendsGoFishing said:

Oh my goodness! That is crazy scary! I would definitely see your NL! No matter the SIZE of the herniation, it can still cause symptoms, but dysautonomia sounds like a very likely culprit. I've never had problems with high-powered sedatives, only the OTC ones like Benadryl and Codeine. I have an "adverse" reaction with most medications. Medications that normally make people sleep, make me hyper and the other way around. I actually take an "upper" to sleep. Still ruling out dysautonomia and EDS here though. It's not a quick process by any means. I would try to confer with your anesthesiologist BEFORE your surgery in June. You should meet with him/her pre-op and talk about it!