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Topic: Clusters, constant vomiting, IBS-D (Read 469 times) |
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Garys_Girl
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Clusters, constant vomiting, IBS-D
« on: Sep 3rd, 2007, 8:40pm » |
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Well, we're losing the battle.
This site helped us diagnose Gary. Like so many others, it went improperly diagnosed for seven years.
We found this site and immediately tried Kudzu, and it helped. Having grown up in the 70s, we were not uncomfortable with trying busting with alternatives, so we tried shrooms (after trying seeds with no success). They provided some relief in Sep/Oct, but the beast would not be put down.
So earlier this year we went the traditional route. He's tried:
Depakote
Verapamil with the pred taper (no relief at all)
Imitrex
Topomax
Elavil
... the list goes on.
He did the hospitalization thing for the DHE-45 drip. What a nightmare THAT was.
He has always had problems with his GI system. He was diagnosed with IBS around the same time we diagnosed his clusters.
The DHE, though "served" with Regalan (sp?), made him so sick, you could hear him vomiting through three doors.
It did something to him. After the administration of DHE, he became unable to drink water without vomiting - and I mean like a seizure, like his body wants to expel all his organs.
Good thing he had a little extra to spare - he lost 35 pounds in about five weeks. We tried all the anti-emetics. They even prescribed Zofran - which CAUSES headaches (we find out the hard way) for ****'s sake.
Gary's about to be officially chronic. To get some much needed relief, he's turned to opiates (again).
At least he's off all the anxiety meds - those did NOT help.
The GI specialist has tried everything - and we're down to Tincture of Opium to slow his system down. It's helping a little bit. At least he's not vomiting up everything he eats.
My question is this. Are there others out there for whom the clusters seem to be hand-in-hand with GI problems? Did you find something that helped your situation?
Because he's done the endos and the colonoscopies, and the problem is not with his GI system. His body is just producing huge amounts of acid, and without the tincture of opium, it was either immediately coming out the top, or almost immediately coming out the other end. Since the DHE, the incidents of vomiting is through the ceiling.
Now the poor man has to fear eating as well as sleeping and being awake - because there's no cycle, there's no relief, he's never without pain, and the hits come with no regularity any more like they did in the beginning.
We have the 300 pound 02 tank and four or five traveling bottles. But caffeine just isn't an option anymore.
Anyone with this type of experience? Anyone with any thoughts or suggestions?
Wishing all of you pfdn,
Laurie
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Laurie
"It's comin' like a freight train - can't you hear it?" - Gary
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victoriawatson
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Re: Clusters, constant vomiting, IBS-D
« Reply #1 on: Sep 4th, 2007, 1:12am » |
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Wow, I am so sorry he is going through all of those things together. I really don't have any answers for you, but I do have a lot of sympathy. Imitrex pretty much always works for me, and it has been a life saver/miracle. I hope you don't give up and keep searching for a "bandaid" that works for you guys, since apparently there is no cure.
Keep fighting although it is exhausting! 
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DennisM1045
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Re: Clusters, constant vomiting, IBS-D
« Reply #2 on: Sep 4th, 2007, 7:28am » |
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Hi Laurie,
I have both IBS and Diverticulitus. Had a bowel resection in 2000 in which they removed 18" of my large intestine. The operation left me with a nice zipper up the front 
Anyway, for a long while I thought the two were linked. My clusters started about the same time as my IBS/Diverticulitus. Now I'm convinced that the two syndromes are separate but react to the same stimulous. i.e. STRESS! Whenever I get hit my IBS is right behind it (pardon the pun  ). I know this doesn't help but you asked for experience and there is mine.
Tell Gary I hope finds his magic bullet soon. Wishing you both PFDAN.
-Dennis-
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Garys_Girl
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Re: Clusters, constant vomiting, IBS-D
« Reply #3 on: Sep 5th, 2007, 1:57pm » |
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We know there's no magic bullet. We just remain searching for some relief to something. It would be a heck of a lot easier to deal with just one pain.
Thanks for the replies,
Laurie
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LeLimey
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Re: Clusters, constant vomiting, IBS-D
« Reply #4 on: Sep 5th, 2007, 2:27pm » |
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Laurie I'm sorry I've missed this thread, I've been in and out of hospital all year with GI problems which have come very close to killing me on a couple of occasions.
I've literally been taken into hospital with a police escort (how embarassing is that?!)
Have they tested him for krohns or coeliac disease? Any other auto immune conditions? I've had a similar episode to this four years ago - funnily enough it was connected with CH starting for me too - I was on Prednisolone for 9 months before they tried switching me to a different steroid which was a disaster and my CH started two days later. I can't say with any definitive proof that the two were connected but in my mind they were. Especially since Pred is such a good treatment for CH. As an aside every time they tried to decrease the dose of pred I got hit with excruciating headaches.. (I do actually think I was episodic before this anyhow.)
Having said that the Pred at the time DID solve the GI problems, the only "fault" with it was I was on it for far too long and now can't use it again. I have a metabolic bone disease and steroid induced cataracts as after that short break I was actually on it in the end for over 13 months.
Prednisone is a good thing to try both for the GI problems and for CH PROVIDED - and I can't stress that bit enough - you use ot for a finite period of time. It needs to be discussed beforehand but I can say from my own experience again that within a couple of days I felt fantastic and I'd been so ill beforehand.
If you want to talk anytime pm me your # and a time to call - I'll happily discuss everything at length with you if it will help at all.
Helen
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Garys_Girl
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Re: Clusters, constant vomiting, IBS-D
« Reply #5 on: Sep 6th, 2007, 8:55am » |
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Helen,
At this point, Gary's been tested for everything under the sun, and he's done the gastric emptying studies. There is no bowel disease of any kind - however he does have internal hemorrhoids from the amount of acid his system is producing.
He's tried pred, and it has exacerbated his production of acid.
I hate to be gross - but the man can eat, and within five minutes throw up the entire meal and it is nothing but liquid.
He's on protonix, which the GI doc wants to up to 2x per day, though everyone else seems to freak about that. However, it does seem like it might be appropriate given what's going on with his insane acid production.
He's supposed to be using steroidal suppositories - but with the IBS-D, they're never in there long enough to do any good. 
We know IBS is stress related. We know clusters are at least exacerbated by stress. But the man won't go for yoga or biofeedback or anything.
19 months into it, and he still wants the quick fix. If you can believe it, he will still resort to caffeine. He hates red bull, so he makes espresso. For him it like the ultimate no-no and he KNOWS it, but I guess for him the GI pain is worth the CH relief or he wouldn't still do it. At least it isn't daily.
I just pray (and beg the Universe!) he finds the will to try new things with some patience before he decides to end it, because he is in hell.
To which, I finally talked him into heading to Michigan to the Michigan Head-Pain and Neurological Institute ( http://www.mhni.com ). It's the only headache/neurological clinic we've seen that lists chronic vomiting along with neurological disorders. I'm trying to be simply cautiously optimistic and not excited.
Helen - I'm not sure where things stand for you right now. I am so glad you've solved the GI problems! And I sure hope you are otherwise pain free.
My best,
Laurie
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"It's comin' like a freight train - can't you hear it?" - Gary
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LeLimey
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Re: Clusters, constant vomiting, IBS-D
« Reply #6 on: Sep 6th, 2007, 9:44am » |
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Laurie my GI problems are ongoing - its difficult to say the least as I know you know and my head still plays up just not as much at the moment. I still go through periods where it ramps up but you just learn tp appreciate the times when it doesn't.
In addition to the "we can't decide what it is" thing I have going on I have definite diagnosis's of hiatus hernia, ulcerative colitis and collagenous colitis all of which they can treat and are treating, its the part before that, the stomach bit itself that isn't responding to any treatment. I have been told that chemo is an option and if that doesn't work then eventally we'll have to face the prospect of them removing my stomach which at times now seems quite desirable I can tell you.
I know how hard it is to be constantly vomiting, even when there is nothing left to bring up. I know how hard it it to get to the loo in time and I know just how hard it is to force yourself to eat when you know what is going
to happen 15 minutes later (if you're lucky)
I tend to eat little bits often rather than trying to eat "meals" as I have more luck with keeping it down that way.
Has Gary ever been tube fed or fed through a central line? It would maybe be a way of getting some nutrition into him while they work on the rest.
I know the NG tube still puts stuff into your stomach but when I was in hospital on one occasion there was a woman who had a line into her chest and she was being fed nutrients into her blood and bypassing her stomach completely. I don't know what that was called though.
I'm sorry if I'm thinking up things you've already tried, I'm no doctor but I have every sympathy, I know how tough it is or at least can have some idea of how much worse it is for you and I'm desperately sorry for both of you. If nothing else I can offer some support and somewhere to vent!
Love to you both
Helen
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Garys_Girl
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Re: Clusters, constant vomiting, IBS-D
« Reply #7 on: Sep 6th, 2007, 11:07am » |
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Don't ever be sorry for thinking up things people have tried! If they haven't, it was worth the sharing. And if they have, it's now there as future knowledge for those that may need it. 
Right now, the tincture of opium seems to be helping a little bit. We're not quite sure if his weight has stabilized (now that he's down to the weight he should be  or if he's just losing it more slowly. But some food is staying down. He eats a lot of things frequently. The vomiting is definitely associated with stress, because he is trying to keep working through this, and when he heads into NYC for meetings, it is always a bad day. The saddest part, however, is not so much the vomiting, as the pain associated with it. And if he doesn't throw it up, then it's even more painful as liquid out the other end. And that's despite the opium and the opiates he's taking to push back the pain of the beast. On what he's on, most people would be insanely constipated. The biggest problem, actually, is keeping him hydrated. And we do head to the hospital for IV fluids pretty frequently.
The general consensus of our doctors is that he needs to be studied in a university setting. We've told them - find the university that wants to study him, and he's there.
Hope the CH remains at bay. Within the chronic pain, Gary has cycles of high activity and not-so-high activity. We're at a high point right now, and it sucks. And that is probably the understatement of the year.
(((((((((((((((((((((hugs)))))))))))))))))))) to you Helen. Hang in there. You'll be in my thoughts and prayers,
Laurie
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"It's comin' like a freight train - can't you hear it?" - Gary
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chellchell
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Re: Clusters, constant vomiting, IBS-D
« Reply #8 on: Sep 6th, 2007, 9:16pm » |
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Laurie,
I'm really new to this CH thing but have had Migraines for the last 6 years. About 2 years ago my gallbladder went kaput and I developed Pancreatitis and then irritable bowel syndrome. I've never really have connected my headaches to my irritable bowel syndrome until I read your thread. They do seem to act up together but again you are right about it reacting to stress, both of them. I also have Rheumatoid Arthritis which doesn't help anything! IBS is the pits when it's acting up. I really hope Gary hangs in there and finds some relief soon. Not much help but I wanted to let him know he's not alone with the IBS.
Hugs,
Michelle S.
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Garys_Girl
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Re: Clusters, constant vomiting, IBS-D
« Reply #9 on: Sep 7th, 2007, 4:37pm » |
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"The association between migraine and functional gastrointestinal disorders has been confirmed by many clinical observations and epidemiological studies."
Here's the link: http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=pubmed& dopt=AbstractPlus&list_uids=16419571
So it wouldn't be surprising to find there's a link between IBS and clusters.
Laurie
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Laurie
"It's comin' like a freight train - can't you hear it?" - Gary
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LeLimey
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Re: Clusters, constant vomiting, IBS-D
« Reply #10 on: Sep 8th, 2007, 3:33am » |
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Nothing surprises me anymore Laurie - after all there is a condition called Abdominal Migraine which when I first heard of it I'll be honest and say I thought was a joke. Its no joke though sadly.
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wobwood55
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Re: Clusters, constant vomiting, IBS-D
« Reply #11 on: Sep 12th, 2007, 3:25pm » |
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Hello,
Ive been reading, and the one thing that keeps popping in my head is CELIAC. I have episodic clusters and celiac disease. From what I know of celiac, the only way to test for it is the complete removal of gluten from your diet for a month or more. For me it took over a month and a half before it began to get better. It cut down on my vomiting, reduced my stomach acid, stopped these rashes I used to get on my face and scalp, it cut down on my IBS symptoms, and made my headaches a little bit better. I know at times it can seem like you are loosing this battle, but what Ive learned from all of this is that everyday I am still here is a victory.
Keep up the fight!
Robert
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