intestinal migraines

Hello KayDee... I am so sorry for your pain. My brother has intestinal migraines and I am seeking anything to help him with dealing with this horrible condition. I will pass along any info that I come across!

I have an intestinal migraine everyday of my life. I rarely vomit though. I can't remember the last time I have. I've had them since I was born 20 years ago. It interferes with every aspect of my life, from if I can stand long enough to take a shower to if I can even drive myself home. Some days I can't even get out of bed and I have to force myself. I have been searching for information on it ever since the internet first came to be. I was put on beta blockers and they seemed to help. I developed a reaction to them though, after 15 years of taking them. I do have a neurologist but he has only recently started actual tests. I've had a CT scan, an endoscopy, and a colonoscopy. They found nothing abnormal. When I get a migraine, I have intense pain that starts around my bellybutton. It goes up into my heart and then into my lymph nodes. Then I get a rash that looks like hives on my shoulders, upper back, and chest. If anyone can help at all, I would be so grateful.

Well, the reason you can't find anything is because this is so rare and unknown that nobody really knows about it to research it. Every doctor I have, when I go see them for the first time, they ask me if i have any medical problems and I say I have intestinal migraines and every single one of the say "What's that?" I don't know any alternative names for it. I don't think this will ever be researched and like i said, it's been 20 years and my doctor just decided a year ago to do those tests, and I just found any kind of result in searches online and I have been looking since the internet first appeared so I don't know anything you don't know. I say just give up until these become more researched.

Aha! Yes, thank you Ann! (I actually feel a little silly for not searching for that instead :p)

As I was trying to say earlier, if a headache specialist tells you that you have a certain type of migraine, it would show up on the ICHD list of headache diagnoses unless the doctor was calling it by an incorrect name. It is NOT due to a lack of research, as there is indeed plenty of research available on "abdominal migraines" (don't give up Bodaboa!).

Now that Ann pointed out its proper name, there is indeed a wealth of information available on the internet both through my university access to scholarly journals and even through a simple Google search (http://www.google.com/search?hl=en&q=abdominal+migraine&btnG=Google+Search).

The ICHD list (available online @ http://216.25.100.131/Upload/CT_Clas/ICHD-IIR1final.doc) describes the type of migraine as "An idiopathic recurrent disorder seen mainly in children and characterised [sic] by episodic midline abdominal pain manifesting in attacks lasting 1-72 hours with normality between episodes. The pain is of moderate to severe intensity and associated with vasomotor symptoms, nausea and vomiting." The ICHD code is "1.3.2".

The diagnostic criteria are:
A. At least 5 attacks fulfilling criteria B-D
B. Attacks of abdominal pain lasting 1-72 hours (untreated or unsuccessfully treated)
C. Abdominal pain has all of the following characteristics:
1. midline location, periumbilical or poorly localised [sic]
2. dull or “just sore” quality
3. moderate or severe intensity
D. During abdominal pain at least 2 of the following:
1. anorexia
2. nausea
3. vomiting
4. pallor
E. Not attributed to another disorder1

Unfortunately, they also note that "Most children with abdominal migraine will develop migraine headache later in life", though I do not know if that applies to you, Bodaboa or KayDee.

One journal article suggests that "Potential triggers to be avoided include caffeine-, nitrite-, and amine-containing foods as well as emotional arousal, travel, prolonged fasting, altered sleep patterns, and exposure to flickering or glaring lights. When episodes are frequent, prophylactic therapy may include pizotifen, propanolol, cyproheptadine, or sumatriptan."

For more information on these drugs:
Pizotifen: http://en.wikipedia.org/wiki/Pizotifen
Propanolol: http://en.wikipedia.org/wiki/Propanolol
Cyproheptadine (or Periactin): http://en.wikipedia.org/wiki/Cyproheptadine
Sumatriptan (or Imitrex): http://en.wikipedia.org/wiki/Sumatriptan

Another jounral suggests that valproic acid (aka Depakote or divalproex) is particular helpful, especially when administered via IV.

The European Journal of Neurology specifically delves into adult abdominal migraines. It says that "More recently, a case–control retrospective clinical study in an abdominal migraine [younger] population, showed that in a 7–10 years observational period after diagnosis, 'abdominal migraine' completely disappeared in 61% of the patients as they were growing up." (If either of you two are young this might come as good news).

Elsewhere, flunarizine is recommended as a potential treatment.

Anyway, I'll stop just throwing information out there. But, as I said earlier, there is a ton of information available so, if you can't find anything, I'd be happy to help. Bodaboa, I imagine the reason you were never able to find any information online "since the internet first appeared" is because of the incorrect naming of the disorder.

One more important fact: While further research into this type of headache disorder will better inform you, an article at http://www.helpforheadaches.com/articles/what-ab-mx.htm notes a fairly telling fact: that in most cases abdominal migraine is/should be treated with the SAME medications as other types of migraine.

If you need help getting access to full text journal articles (usually you'll need a costly subscription to a journal archiving site unless you attend or work at a university), please let me know.

Good luck!

Ben

P.S. Thanks again Ann!

Bodaboa said...
Well, I'll try to look but hardly any of those symptoms apply to me....I never throw up and I'm definitely no longer a child lol....and I've never had a headache migraine...so i dunno...

I think there are always people that do not fall in to the text book pattern of things (always an exception to a rule).  Is your Doctor a Neuro who is a Headache Specialist Bodaboa?  If not you need to see one.  If your Doc is a Specialist in Headache he/she is the best one to deal with this, although it maybe a good idea to be checked out by a Gastro Doc too just to rule anything untoward out!

take care

Ann

Thanks for the help. Have not looked at this page for quite awhile. I am storing the low oxalate diet in my memory for future consideration.  In my desperation to feel half human before returning to work in Dec., I put myself on an elimination diet.  My headaches, nausea, fatigue subsided 70%, but were still there daily and were bothersome.  Went to a neurologist, who didn't read the GI report that was forwarded, too long, and he asked me if I wanted to get rid of the headaches.  Gave me a prescription for amitriptyline 25mg/day, and zomig rapidmelt for the migraine days.  Is doing the trick on a day to day basis, though I can sometimes feel the headaches breaking through.  Have had two bad sessions since Dec.5 that required the rapimelt, and that worked.  So, as for the underlying problem??? Don't know if I'll ever pin it down, but will keep trying, and would like any further suggestions.  Something in the diet I think, though may be associated with too much fibre as well. I did research abdominal migraines as well and thats where I clued into trying a dietary modification. 

 

I'm new to this type of discussion, however do have some info. You are not having abdominal migraine. I have every migraine known with the exception of intestinal migraine. I too am on Inderal or Propanolol, for Abdominal Migraine. I also have what is known as "Ja Ma Vu" hope spelling is correct, with my Abdominal Migraine. These are visions that appear like a slide show of things that seem familiar to me that have actually never happened, in several cases they happen sometime in the near future. I experience the smell of metal or rubber as in new baby dolls. The visions occur as I have a spasm or contraction in my abdomen that bends me over, resembling a seizure, no headache, I can talk and answer questions, none of my vitals change in any way, ex. bp, brainwaves, heartrate, etc. There are just so very many things affecting us from our environment to the processing of the foods we eat. I am 53 years old, abdominal migraines usually occur in young girls 5-9. My boss' 7 year old started having them 7 years after I was diagnosed. From what I understand my doctor to be telling me, the reason such conditions are referred to as migraine is due to the contraction on blood vessel, arteries or in my case the aorta, not because a headache is involved. I also have gastrointestinal disease. I have found that my eating and exercise habits seem to effect the occurances. Don't know if my info sheds any light, but I do hope you find some relief.