Propofol

[Maxine]

We went to the Cleveland Clinic, and They went through all of my medications, and we discussed sedation. I told them I don't want anything, or something very light. They want to use propofol, but I'm not comfortable with that as my ANS has been really acting up-----dizzy, low BP, lower then usual heart rate. Ugggg---just a mess lately. I also have really bad thoracic back pain, but fortunately it wasn't that bad today, and I hope this continues. That's some scary stuff....I never had thoracic spine pain this bad. It's bothered me a long time, but never like this.

Anyway, I'm going for the colonoscopy on June 1st-----------------it will be done one way or the other. I'll discuss it more when I get there on the 1st. I was wondering how those of you who had propofol have done AFTER the procedure------------and also during. Does anyone here have symptoms simular to mine. I have upper brain stem compression, and some neurological problems associated with this. I've had a lot of weakness, and my cortisol levels have been low recently. MY PCP was concerned about this since I was getting the colonoscopy done. I figure the Cleveland Clinic should be able to deal with these complications.

Thanks----

Maxine :0)

[maggie]

I also need to have a colonscopy done soon and when I had my appendix taken out plus four inches of my colon they used propofol and it went fine. I don't have ans or your other medical problems but I do have a liver enzyme problem which makes it very difficult for doctors to use meds on me. Cleveland Clinic in Florida is doing my colonscopy and hopefully all will go well. I can't make it through the cleansing process so they are trying to help me with this process. I'm to take mirilax and divide the one dose into four and take it slowly through the day and see if this will work. I do this for three days and then if I make that they will be able to do the colonscopy. If I can't get through this procedure they are going to admit to the hospital and put a tube down my nose and clean me out that way. Oh the fun we have, I just can't wait to have this all done, that's why I have been putting it off. Hope is all goes well for youl

Maggie

[issie]

I have low cortisol too. Whenever I have any kind of surgery or stressful procedures done, they give me cortisol IV. It helps to support the adrenals and allow you to be able to tolderate the stress better so you don't crash. Your doctor should be able to write a note to the

GI doctor and he can do it prior to you colonoscopy. When I had my last, they used Florinol. I think that's what they called it. It's in the Demoral family but without as many side effects. I did fine with it.

[spaceorca]

My son has a full set of autonomic problems and Crohn's disease, so has had many colonoscopies. He does fine with proprofol. In fact, he affirmatively likes that aspect of the colonoscopy because he gets a much better sleep while sedated with proprofol than at almost any other time. The med does make him very sleepy for a day or two after the procedure, but that's normal for any patient.

A sedative that my son has had problems with is versed. The problem for him is that it doesn't work; in fact, it sometimes has a reverse effect--i.e., it make him more aware of what is happening. He had one spinal test and one stomach procedure done with versed, and they were both torture: he was awake, screaming, and begging the doctors for more medication. Afterwards, they realized that he was having a reversed reaction to the medication. (You'd think that would have been obvious from the screams, but ...) And some of his doctors have hypothesized that the autonomic dysfunction may relate to this backwards response that he has to versed. I don't know if others here have experienced that, or if it really is related to autonomic disorder.

[sue1234]

I just had a colonoscopy in Feb. and was very leary of the prep because I feel my POTS is related to low blood volume. BUT, I actually tolerated the prep really well--no extra lightheadedness or anything. I was surprised. As far as the sedation, I'm like the previous poster--best sleep I've had in years! I came out of it just fine, and I usually take low-dose everything, as I react to everything.

If you have consistently low cortisol levels, you have to have that addressed, even before your prep, as that will be your first stessor. You wouldn't want to go into an addisonian crisis(or similar event) while at home, because the symptoms are vomiting, diarrhea, and stomach pain--what might be misconstrued as just prep symptoms!!!

Good luck and let us know how it goes. I know you are very hesistant, but know you need to get this behind you.

[Maxine]

Thanks for the information.

Spaceorca-----wow, that's a lot for your son to deal with. When I went to the NIH EDS study the geneticist thought I had inflammatory bowel disease because I have so much diverticuli, but I told her I didn't think I had it because I never get the diarrhea that comes with it=======she said my finger tips were clubbing, and I said this was the regular shape of my finger nails. My only symptoms are chronic constipation and a LOT of bloating discomfort, and I also get full easily. In fact my cousin thought I could possible have mild cystic fibrosis. Cf affects digestion, and her son has this worse then the lung issues----although his lung isses ARE very serious. CF is more complicated then the general public is aware of. When you have a family member who has this, you find out much more about CF. One of the big digestion problems with CF is a lot of bloat and constipation......they lack enzymes to digest food. If I did have this, it would be VERY mild, as this young man goes though a LOT.... I don't think I have this..but I do also have some interstitial markings on my lungs that they are watching.

I'm wondering if my digestion problems are more related to the excessive diverticuli and the EDS....I'm told it could be FROM the EDS. In fact the gastroenterologist from the CC thought the diverticuli could be from the EDS also. That makes about 3 or 4 docs thinks EDS is related to the bowel problems.

I had versed in Feb 2001, and I also had a bad reaction. Initially I went home groggy, and I though I got through the procedure OK, but when I got up later that evening after lying down most of the day my heart stounding pounding hard and fast. When I went to the ER it was only 108bpm. I thought this was low compared to how it felt in my chest. My adrenaline felt like it was pumping hard. this is how it had been on and off for 2 months prior to that, but not as intense. At the ER that night they wanted to give me an anti-nausea medication, and I told them NO, that I was already reacting to the drugs they used in the morning. I was a mess, but the guy said it would relax me. IT DID THE OPPOSITE! I felt like I wanted to climb out of my skin...and when they did an abdominal x-ray, I refused to move out of the bed, as I was afraid this would make me feel even crazier. I kept telling my Dad how lucky everyone who walked by the ER exam room was because they weren't crazy like me. It took all night long for the drugs to wear off, and I can't believe Iwent to work that monday. This was on a friday night...after the endoscope in the morning. I even remember the date--------Feb. 5th, and the temperature went from an unseasonably warm 65 degrees to 10 degrees in a matter of hours. The weather was a crazy as I felt.

Anyway, I wanted to do the colonoscopy without sedation, or something very mild. My brain stem symptoms have been more intense, and my cortisol levels are low, and that concerns me. I'm going to go on the 1st no matter what. I'll just have to express all this when I get there. I did on thursday when I went to the CC, but he seemed rushed and tired. He took me seriously, but I forget to discuss the cortisol levels. He discussed doing a virtual colonoscopy, but we both agreed the regular colonoscopy was better. He did say it was more risky for me due to the EDS, but said they use a pediatric scope. he said to wear my cervical spine collar to protect my neck. He didn't feel I would need to be intubated---but if I didi, they would do it awake---- . He wants me sedated because he said if I did end up with a pain syndrome, the anesthesiologist wouldn't like trying to pull my out of a pain situation mid procedure.

Anyway...........I'm also afraid of what they'll find due to family history......then I tell them to keep giving me propofol if they find something sinister....I won't want them to wake me up................

MOSTLY PRAYING THEY DON'T FIND ANYTHING BAD-----and also praying for a safe procedure, and no POTS crash after, or a stroke from the bad vascular anatomy in the back of my neck/cranial area.

Thanks again form your support, encouragement, and understanding-------it means the world to me.

Maxine :0)

[issie]

My son has a full set of autonomic problems and Crohn's disease, so has had many colonoscopies. He does fine with proprofol. In fact, he affirmatively likes that aspect of the colonoscopy because he gets a much better sleep while sedated with proprofol than at almost any other time. The med does make him very sleepy for a day or two after the procedure, but that's normal for any patient.

A sedative that my son has had problems with is versed. The problem for him is that it doesn't work; in fact, it sometimes has a reverse effect--i.e., it make him more aware of what is happening. He had one spinal test and one stomach procedure done with versed, and they were both torture: he was awake, screaming, and begging the doctors for more medication. Afterwards, they realized that he was having a reversed reaction to the medication. (You'd think that would have been obvious from the screams, but ...) And some of his doctors have hypothesized that the autonomic dysfunction may relate to this backwards response that he has to versed. I don't know if others here have experienced that, or if it really is related to autonomic disorder.

I have paradox reactions to all kinds of meds. I don't know why this happens, but I think it's pretty common with us POTS people. Valium sends me through the wall and over it and into it etc. I also react to pain meds that way. They gave me dulauded and I felt like I was going to crawl out of my skin. It gave me a severe panic reaction as did Zofran (anti naseau). They then gave me Ativan and it calmed everything down. Ativan is basically in the valium family, but I could use it. Every ones body is so different, what works for one won't work for another.

[issie]

Thanks for the information.

Spaceorca-----wow, that's a lot for your son to deal with. When I went to the NIH EDS study the geneticist thought I had inflammatory bowel disease because I have so much diverticuli, but I told her I didn't think I had it because I never get the diarrhea that comes with it=======she said my finger tips were clubbing, and I said this was the regular shape of my finger nails. My only symptoms are chronic constipation and a LOT of bloating discomfort, and I also get full easily. In fact my cousin thought I could possible have mild cystic fibrosis. Cf affects digestion, and her son has this worse then the lung issues----although his lung isses ARE very serious. CF is more complicated then the general public is aware of. When you have a family member who has this, you find out much more about CF. One of the big digestion problems with CF is a lot of bloat and constipation......they lack enzymes to digest food. If I did have this, it would be VERY mild, as this young man goes though a LOT.... I don't think I have this..but I do also have some interstitial markings on my lungs that they are watching.

I'm wondering if my digestion problems are more related to the excessive diverticuli and the EDS....I'm told it could be FROM the EDS. In fact the gastroenterologist from the CC thought the diverticuli could be from the EDS also. That makes about 3 or 4 docs thinks EDS is related to the bowel problems.

I had versed in Feb 2001, and I also had a bad reaction. Initially I went home groggy, and I though I got through the procedure OK, but when I got up later that evening after lying down most of the day my heart stounding pounding hard and fast. When I went to the ER it was only 108bpm. I thought this was low compared to how it felt in my chest. My adrenaline felt like it was pumping hard. this is how it had been on and off for 2 months prior to that, but not as intense. At the ER that night they wanted to give me an anti-nausea medication, and I told them NO, that I was already reacting to the drugs they used in the morning. I was a mess, but the guy said it would relax me. IT DID THE OPPOSITE! I felt like I wanted to climb out of my skin...and when they did an abdominal x-ray, I refused to move out of the bed, as I was afraid this would make me feel even crazier. I kept telling my Dad how lucky everyone who walked by the ER exam room was because they weren't crazy like me. It took all night long for the drugs to wear off, and I can't believe Iwent to work that monday. This was on a friday night...after the endoscope in the morning. I even remember the date--------Feb. 5th, and the temperature went from an unseasonably warm 65 degrees to 10 degrees in a matter of hours. The weather was a crazy as I felt.

Anyway, I wanted to do the colonoscopy without sedation, or something very mild. My brain stem symptoms have been more intense, and my cortisol levels are low, and that concerns me. I'm going to go on the 1st no matter what. I'll just have to express all this when I get there. I did on thursday when I went to the CC, but he seemed rushed and tired. He took me seriously, but I forget to discuss the cortisol levels. He discussed doing a virtual colonoscopy, but we both agreed the regular colonoscopy was better. He did say it was more risky for me due to the EDS, but said they use a pediatric scope. he said to wear my cervical spine collar to protect my neck. He didn't feel I would need to be intubated---but if I didi, they would do it awake---- . He wants me sedated because he said if I did end up with a pain syndrome, the anesthesiologist wouldn't like trying to pull my out of a pain situation mid procedure.

Anyway...........I'm also afraid of what they'll find due to family history......then I tell them to keep giving me propofol if they find something sinister....I won't want them to wake me up................

MOSTLY PRAYING THEY DON'T FIND ANYTHING BAD-----and also praying for a safe procedure, and no POTS crash after, or a stroke from the bad vascular anatomy in the back of my neck/cranial area.

Thanks again form your support, encouragement, and understanding-------it means the world to me.

Maxine :0)

Maxine,

I can't stress to you enough about the cortisol support. It really makes a difference in how your body responds to stress and whether or not you'll have POTS issues. Note: an earilier post about paradox reactions. I too, paradox to many meds. I agree with an earlier post that it may be a good idea to support the cortisol before the prep. The prep is a bad thing to have to go through. That to me, is the worst part of the whole thing. It does help to put the solution in some sort of masking drink. Hope all goes well for you.

[Maxine]

Today I had cortisol levels checked again-------------hmmmmm............................. We'll see how that comes out. My catecholimines were checked also, and I'm not really sure why I asked my PCP to check these. I asked him to check my cortisol levels also, as I usually have to ask for all my testing. Do any of you find that--------------that you have to ask for your own testing? Don't they know what to do? I do like my PCP, but I think he's a bit lost with my EDS, POTS, neck instability issues. I have to give him credit, as he hasn't thrown me out of his office yet. He scratches his head why I have had such a hard time getting the cervical cranial issues to be taken seriously locally because NIH, and another orthopedic surgeon have it documented, so why aren't other neurosurgeons? Right now, as I type this it's swollen in the usual area of my neck near my clavicle, but in the last week it's swollen in the back of my neck, and just under my jaw.

I have a headache along with this, and tingling finger tips, the back of my hands, and both feet. I'm talking like a drunk often, and feeling like DUH....just dumb. I'm thinking right, but not able to express it well. This is why I'm afraid of thw propofol------I'm afraid of anything that will put me out. I don't know how my brain will do, as I'm struggling more with neurological issues. I'm also having vision problems-----mainly focusing. The neuro problems are difficult to explain-----------I just feel really clumsy and out of it. There's no sense in talking to any of my docs about this, as they don't get it. My PCP is concerned about the cortisol, but he assumes the cleveland clinic will know how to handle any complications. I would assume they do, but then again their neurosurgery dept. does not have a clue how serious my instability is, and if they do they're not telling me. Another thing is that I'm a lot more wiped out then my usual, and my eyes are constantly running. I could go on, but I'm out of words for all of this.

It's really been a big struggle, but I know I have to get this colonoscopy done. The cancer in our family is scary...........

Maxine :0)

[spaceorca]

Good luck, Maxine! I hope the procedure goes well for you. If your doctor does find low cortisol, or if you've had that diagnosed in the past, I would be sure to ask the doctors doing the colonoscopy about it. They probably will want to give you extra cortisol (my son also has Addison's disease--low cortisol--so this is routine for him). But the doctors may forget to ask so, just like asking for our own tests, you may need to remind them! We definitely have that ask-for-your-own-test problem, although (like you) with supportive doctors.

It's interesting how many POTS people have paradoxical reactions to medications. But I guess not surprising on reflection because the autonomic system has so many feedback loops. If a med affects one part of the system, and the system is already disturbed, it's plausible that the final outcome would be different than in the autonomically healthy. Hmm.

[Maxine]

Thanks!

I definately have adverse reactions, and afraid to take many medications--------even motrin/advil, and I know these may help with inflammation from the EDS. I can't take narcotic pain meds, so tylenol is it for me. I use ICE also, but it's very short term.

I even had an adverse reaction to lidocaine, and it lasted for hours!

Maxine :0)