New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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questions re endoscopy

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by Tammie, Aug 26, 2011.

  1. Tammie

    Tammie Senior Member

    Woodridge, IL
    I have been having a ton of stomach issues and have had various tests run and have tried supplements and meds, and am now at the pt where I have to have an upper endoscopy. (I have been avoiding it as long as possible due to major PTSD related fears and also due to fears regarding how sensitive to meds and pretty much everything I am). Anyway, I am at the pt where I literally cannot keep any foods down except pretzels and so this really needs done.

    So, for those who have had this, I have a few questions.

    Which med did they use - versed or pro (something - can't remember offhand, but it is the same thing that killed Michael Jackson)? And were the effects bad, long lasting, or anything else that I should be aware of? (I have breathing issues and TMJ and possible cardiac issues and MCS and have reacted badly to benzos before)

    Did anyone do this without any pain meds? (I cannot have Demerol and that's what they normally use) If so, was it really painful after? And for how long?

    Did the test make you crash?

    Did you need to have someone with you after you went home?

    Is there anything else I should know or ask about?
  2. Ernie


    I had this done years ago and it was no problem at all. I was really scared and nervous about it but to be honest I remembered nothing. I can't remember the meds they gave but it was something that just makes you not remember what is going on. I was not all the way sedated though.
  3. zoe.a.m.

    zoe.a.m. Senior Member

    Olympic Peninsula, Washington
    Hi Tammie,
    My experience was relatively positive given that I thought there would be many, many problems and have never been under general anesthesia--though you do not get truly knocked out for this, but it was the same amount of surrender as far as I was concerned. I too have PTSD and the problems that surround that.

    My doctor decided to use Propofol after I told him that I have MCS, don't tolerate many meds at all, and take a benzo and Benadryl for sleep. I was still allowed to take these meds the night before using Propofol, so I think that has a lot to do with why he deviated from whatever is normally used. (Yes, it's the Michael Jackson stuff, and I--quite frankly--could see why he paid for that on a regular basis...) I did not have any real problem with this med, though I guess it took me a little longer to totally wake up from it than the average person, but I was only "out" for about 25 minutes. I was irritated that I didn't get to sleep a little while and wake up more on my own: the whole process from start to finish took about 1 hr, which is very fast.

    There was a complete lack of pain following until later that day when my throat became very soar (but I knew why). I did have directions to call in if I experienced a lot of pain, so I did, and they said to call back if it got any worse; it didn't. I think I took a few Advil that day and that night and their was a bit of soreness internally, but I was so happy to be able to eat again that I was mostly focused on that. I can't imagine why anyone would need real painkillers for it--and I had several biopsies into the intestines, so my procedure was more complicated than they usually are.

    The test didn't make me crash, but I also felt very confident in the surgeon (a first for me) and was very no nonsense about my situation, health and concerns. All in all, I felt heard and respected.

    Yes, you have to have someone bring you home. This was hard as I am incredibly low on support people, and this was maybe the hardest part. After asking lots of people, I found there is an organization where I live where retired "helpers" will pick people up/bring them to an appointment. It would be best to have someone you know, just because coming out of the experience and meds is slightly strange, but I didn't wake up not knowing where/who I was like when I had intravenous Valium when I had my wisdom teeth removed. Oh, you cannot drive or make legally-binding decisions, etc. for the day of the procedure. I felt like I could after several hours, but I think I was more out of it than I realized.

    My experience is that this part of the hospital (not the ER or lab or radiology, like where I normally have gone there) is extremely competent. Everyone is very concerned, very professional and takes things quite seriously. They invite questions and encourage you to call for any reason after you've gone home. I had one person in the OR room ask what MCS was (since it was on my chart), and it seemed they did pay special attention to things given that I could have adverse reactions. There was no feeling of my illness not being taken seriously, I think the procedure (and whatever has gotten you to the point of needing an EGD) is enough to garner respect.

    I, frankly, did not expect for anything really to be found, as tests are generally not super helpful for me, but I did have findings: eosonophilic esophagitis, benign stomach polyps and something else that I forget at the moment. The surgeon did not want to treat with steroids because of my medical history, which is the standard long-term treatment for the first condition, but agreed that finding out what allergies I have is extremely important. I was lucky to have another doctor's opinion who told me that this can be caused by an inhaled or chemical allergy as often as a food allergy. I think it's worth asking for a Celiac biopsy if you have any doubt (as long as they're in there). The receptionist at my PCP's office recommended waiting for availability with one surgeon and I'm glad I did that.

    All in all, I managed to be relatively calm prior to it and even got a few hours of sleep. I would recommend doing it given your symptoms. I thought many of my symptoms would be dismissed or there would be nothing found, but I was wrong and the info has been useful.
  4. Sushi

    Sushi Moderation Resource Albuquerque

    Hi Tammie,

    I haven't had this but I have had a lower endoscopy with the same drug -- Propofol -- and it was no problem and I am usually sensitive to meds. You do need someone to take you home as you are likely to be groggy.

    I have several friends with ME who have had the upper endoscopy with propofol--and I went in with one of them and watched. He actually woke up laughing his head off! I also know people who have not had a general and they choked the whole time and were miserable.

    Other things to think about: they may not be looking for viruses--try to get them to test you for viruses in the gut. The friend who woke up laughing was tested for viruses and they found HHV-6 and XMRV by PCR. If they are going in there, it would be a shame not to test for viruses. They could send a sample to the lab at WPI that took over from VIP.

    I have had propofol twice and didn't crash either time though a was sleepy for quite a while after.

    Don't worry, and best wishes,

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