# fellow LEAPers: SOS! Long, but bear with me...



## WD40 (Jun 7, 1999)

Okay, I accidently went off of Elavil for about 8 days (have now received the refill but not touched it yet). Here's the problem. I had felt so well that I decided to try and go off of it. The first few days I had a headache and thought, hey this will be easy! But I have bamboozled myself as the headaches were just stage 1 it seems. Yesterday started fine, even had a raucous afternoon romp, so to speak, and thought I was okay. Around dinner time I started getting a little queasy, but I ate anyway and seemed fine. Then I went to the bathroom but had to strain a bit, and when it came out it was greenish-black (sorry!) so I thought, here's the Pepto I took the other day. That's when the nightmare started.I started feeling like that old IBS-C thing was happening, the feeling of bloating (although I did not appear so), the feeling of pressure in my rectum like I had to go but couldn't, the nausea and headache, etc. I laid flat on the floor while I watched a movie and felt a little better. Then once in bed I couldn't sleep for anything, and I haven't been able to sleep since being off the Elavil - total insomnia - so I'm afraid I've become dependent on the stuff to get a decent night's sleep.This morning I ate my barley and then went to work. I was in the bathroom at least 6 times today trying to "go" and finally did and it was STILL greenish-black, I assume the rest of the Pepto Bismol. And then the nausea began; that old, tight, hideously dizzy and complete with hot flashes nausea that I used to get at the worst of the IBS-C cycles right before a D cycle.I tried my ginger tea and it helped a little, but I just kept getting these waves of nausea every 15 minutes or so. I just wanted to go home! I stuck it out and when I got home I promptly used the aid of something legal here in California but not in Federal laws (can't believe I still had any around!) to get rid of the nausea. And now I'm typing this trying to figure out what I should do.So here's the question: should I stay off of the elavil or go back on it? I am quite certain I'm having withdrawls - a bit shaky, nauseous, headaches, can't sleep, achy muscles, irritable, and even sorrowful for no reason. Since I'm on the elavil for chest pains related to the visceral hypersensitivity, and since the chest pains are no different right now (no increase in severity though maybe frequency) why should I take it? I don't like to take pills if they're not doing what they're being taken for (or are no longer necessary). On the other hand it does help me sleep and I think it makes me not feel the symptoms of being C (namely the bloating and being very VERY aware of my colon and/or rectum and the queasies, of course). So I don't know if the elavil was indeed keeping these other physical symptoms at bay or what. I mean, am I feeling bloated and nauseous because I'm having withdrawls, or did I have NO withdrawals except headaches and now I'm just feeling what I would have felt had I not been on the elavil??? And if so is LEAP really working if I'm having symptoms that were just being masked by the Elavil? I'm so confused. Okay, maybe it's because I am a little whacked out right now (oh, come on, I only had 2 puffs!) but I can't seem to decide."G" wants me back on it TONIGHT. She told me to go back on it until I feel better again, and then TAPER off like the doc told me to do, dummy! I really want off the stuff as it stifles me creatively (my eisel is looking so lonely and my guitar actually has some DUST on it!) and makes me drowsy for most of the morning. Not to mention that I've gained quite a few pounds on this annoying little pill! BUT was it actually helping me? I want to see what LEAP has done for me even off of the pill. I don't know if I want to live with feeling 100% only when I'm taking Elavil for the rest of my life while following LEAP 100%. I want to not need Elavil anymore. No more pain and spasms. I don't really get IBS-C or -D anymore, I don't have intestinal cramps anymore, everything down low has worked fine until now (but the Pepto coulda have been the C culprit as it truly backs me up). I have still had the GERD type symptoms, though, except that the nausea had completely gone away. I want LEAP to help with that. I want the visceral hypersensitivity to go away, mostly. MIKE: is LEAP supposed to help with the big V.H. or just the IBS? I use the CD's but today my relaxation exercises aren't even making a dent. I can handle having D bouts now and then if I overdo a certain food or introduce something I need to completely eliminate. What I have never been able to handle is the intermidable nausea and that yucky funky painful bloated feeling that comes with being backed up. I will take some extra fiber but I am not sure that will help with the nausea. *HELP!!!*


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## ohnometo (Sep 20, 2001)

WD40I would not stop the medicine all at once....Maybe tapering down or breaking it in half but dont completely stop..I went through the same thing when I stopped taking those ativans...I would stick to my diet and worry about the elavil later...That is just my opinion..I dont think you will get that dependent on the medicine.Thank God its not valium or something..and have to get off of that stuff...Been there and done that...Mike will be able to help you with your questions but if it was me I would take your elevil for a while longer until you get comfortable with your new way of eating....Oh Yeah I use to smoke that all the time for my nausea







But I havent for 15 years...seems like just yesterday







hang in there WD40....


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## echris (Jul 19, 2000)

WD40:Let's face it. We don't have normal guts. If we can find one or two (or three strategies) (some dietary exclusions, some meds) that let us live a half way normal life, that's probably the best that most of us will ever be able to do.After I was on my gluten free/lactose free diet almost three months, I started reducing my medications one at a time and very slowly. I started with the Lotronex first because they did not make it any more and only had another 150 tablets or so left. I went from 2 day down to 2 one day and 1 the next. I think I did that for a week. It probably took me a month just to get off of the Lotronex. Then I did the same thing with the Opium. A very little decrease spread out over a month or so. I had about one month between medication removals. Then, after another couple of months, I went off of the Levsin ever so slowly.I wouldn't be a bit surprised if the Pepto wasn't causing some of the discoloration problems. It typically turns people stools black. Try to stick with the "one change at a time" philosophy. So, when you decide to reduce your meds again, don't start out with Pepto in your system.I am so thankful that I'm off of my meds now. I even had about 1-2 YEARS where I had to take Pepto every day on top of my other meds. And, while I detest having to follow a gluten free/lactose free diet, it is so nice to not wake up at 4 or 5 am with enough D to thoroughly clean me out.WD40, from what you've said on the BB you are doing better than you've done in a long, long time. Take the meds again, for a whie, get your gut stabilized again, then try going off of the meds ever so slowly. If you need to, reduce the dose for one or two weeks, then reduce it again for one or two weeks. Better to take a little longer than to go off too quickly and feel like hell again.At least that's my 2 cents worth. If we can't cure it, at least we ought to be able to control it.echris


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## WD40 (Jun 7, 1999)

Thanks guys - I will be taking your advice by going back on it for 2 weeks and then tapering off.


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## Mike NoLomotil (Jun 6, 2000)

Thank you folks I am so glad you are keeping an eye one ach other when I am not able to be here...so busy these days with this new project and my folks who are "taking over" working with LEAP for me on a day to day basis are out trining doctors and dieticians and shooting buffalo







just testing if you were listening....WD these are indeed medications that, because of the things they do in your bidy, cannot be withdrawn al at once. Depending upon the serum hal life of the drug, the blood level starts to drop and within a day or two falls below the terapeutic level (some faster some slower) and you body has adapted to the presenc of the drug...so sort of think of it as "decompensation"...withdrawal is less if you reduce blood level slowlyu over time so indeed get back on the therapeutic dose AND TALK TO THE DOCTOR BEFORE DISCONTINUING ANY MEDICATION.







This is vital.We must always be careful (if Jan and some others are watching...they know this but a reminder never hurt anayone) to make sure that patients undersatnd that if they are on prescription medications and their LEAP protcol helps reduce theior symptoms, thus reducing the apparent need fro the drug, that they must not SELF UNMEDICATE any more thn it is correcto SELF MEDICATE.You must make your doctor aware of how you are feeling better on your new diet and so now shoukd we do a trial of medication reduction and if so how do we do it?Sorry that you had this experience but it is very good you posted it for others to learn from.







So much to do so little time!!!!!MNL


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## Jan LEAP RD (May 19, 2002)

Hi WD40,I guess I don't have much to add, other than I agree with the advice given. And, I will reiterate! Don't change meds without your docs okay!







Let us know how you do as you stabilize out again.


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## WD40 (Jun 7, 1999)

Ah, the problem is that my doctor told me that since I'm "only" on 25 mg I should NOT have any withdrawal symptoms and that if I feel like I don't need it anymore it is okay to go cold turkey. Yeah right! ack! I'm going to stay on it for a few more months and then WEEN myself away as per the advice on this BB. AND I will NOT let my Rx run out again! Yikes! What a nightmare!


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## ohnometo (Sep 20, 2001)

Good Deal WD40...It dont matter if it's 25 mg or not ..your body is use to it so stick with it for now..Even though it is a low dose sometimes that is all we need to do the trick...and help us out just alittle more


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## Mike NoLomotil (Jun 6, 2000)

Well, in general and by the book and for the majority doc ws right...it is something less common. But who ever said any of us fit the majority popuation?In the PDR we are always it seems among those who report2% report diarrhea2% report pain and bloating3% report dizziness1% report homicidal tendenciesIt seems I am ALWAYS stuck in that 1%. What a drag for my friends, eh? (rest their souls)MNL


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## Julia37 (May 9, 2001)

> quote:my doctor told me that since I'm "only" on 25 mg I should NOT have any withdrawal symptoms


This is typical of the clueless doctors I've seen. They give enough medication to bring down an elephant and are so surprised when I report side effects







They don't understand that some people are more sensitive to drugs than the "average"







That's why I gave up on doctors and did without medical care for 10 years - I would tell them, "this med made me very sick", and they would say "that's impossible, it must have been something else" - if I had stayed on some of those meds I'm sure they would have killed me!







Sorry for the rant - I'm frustrated with my salary


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## Mike NoLomotil (Jun 6, 2000)

It's just a suspicion, but, like, you don't like "work" for one now do ya? That salary thing and that clueless thing they just seem to dovetail somehow my friend...


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## Audrey Fussell (May 22, 2002)

WD40 - I am so sorry you are having a rough go at it right now. I was on Elival a year ago and was able to get off it fairly fast. My biggest complaint was I gained sOOOO much weight on the darn pills. Each of us is different and everyone is right you need to follow your doctors advise (of course with eye wide open) I hope you are on your way to feeling better. Just wanted to tell you my package was great and I just love it. I really appreciate you thinking of me. Take it one day at a time and take it easy. Fondly ALF


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