[penguin]

I've been trying to figure out a reason why I get these ridiculously painful stomach spasms that don't respond to anti-spasmodic medication, and only sometimes respond to pain medication.

I've had these for 3-ish years now, and doctors shrug their shoulders and give me pain meds. I've been checked for ulcers, upper GI, gallbladder, etc. etc. These spasms have nothing to do with celiac, they happen whether I'm gluten-free or not and I can never trace an attack back to a specific trigger. I get them anywhere from once a week to once every three months. I've traced it back to food once, and back to stress once, the rest of the attacks (probably 20-50) I have no idea what the trigger was. It also knocks me on my ass for at least a day. Minimum. I throw up (if I'm not taking phenergan for pain), can't eat, can't drink anything, I look like crap... It's a miracle if I don't get an attack after or during travelling (I'm pretty much non-stop on the bentyl when I'm travelling).

I know when I'm about to have an attack, I get an aura, it's hard to explain. It's kind of a spacing out and "oh sh*t" realization before the pain starts. Then the attack happens, usually at night, and if I catch it early it's usually not as bad. If I don't catch it early, it's 3 times as hard to get rid of. After it's over, I'm exhausted and there's residual soreness for a few hours to a day.

Anyhoo, I was reading an article on MSBP and it mentioned that one of the kids had cyclic vomiting and abdominal migraines. So, as I normally do when I see something I don't know about, I googled it. Lo and behold, everything matches. Although it says it normally occurs in children (I did have mystery stomach aches as a kid), cases have been see in adults. I was also diagnosed with migraines (head) when I was 17, but I hadn't had one in a long time, and haven't since I've been diagnosed with migranes.

At any rate, has anyone heard of it? Am I grasping for straws out of frustration? TIA!

[Michi8]

I have heard about it, because my doctor suggested it as a possibility for my stomach pain. We're working through the process of elimination for all my ailments right now (celiac being one possilbility.) Wish I could give you more info on it...

Michelle

[queenofhearts]

I've never heard of abdominal migraines, but it makes sense to me-- nausea is one of the classic symptoms so the digestive system is known to be connected. The fact that you also have had typical migraines would reinforce the connection in my mind.
Your experience with the aura is very interesting & definitely sounds like a migraine pattern. When you are able to "head it off at the pass" what are you doing exactly? Pain meds?

[jerseyangel]

I've never heard of this, but from what you said, it sounds like a real possibility for you.

Do the meds for "traditional" migraines do anything for this type? Maybe do some investigating to try and find a specialist who is familiar with these.

[penguin]

queenofhearts, on Aug 30 2006, 10:11 AM, said:

Your experience with the aura is very interesting & definitely sounds like a migraine pattern. When you are able to "head it off at the pass" what are you doing exactly? Pain meds?

If I'm able to (ie: it's not 10am and I'm at work) I start the OTC pain meds and phenergan. The earlier I use the phenergan, the better off I'm going to be. If I start getting an "aftershock" type effect where a second episode is coming on just after the first, I can usually keep it at bay by taking bentyl and a combination of tylenol and advil.

The phenergan (suppository) works most of the time, and certainly better than the vicodin they gave me for a long time, since I have to be able to keep the vocodin down in order for it to work. Funny enough, I have the phenergan because I had an attack at my mom-by-heart's house during thanksgiving, and her husband was a doctor (orthopedic), and she's a nurse. Anyway, their son has migraines and takes the phenergan suppositories when he has one. The phenergan worked when the vicodin wasn't. Interesting.

jerseyangel, on Aug 30 2006, 10:17 AM, said:

Do the meds for "traditional" migraines do anything for this type? Maybe do some investigating to try and find a specialist who is familiar with these.

I don't know, I think I'm going to call my gastro and ask about digging deeper into my stomach problems. If I could take an imitrex and get rid of it, that would be great. For some reason, doctors kind of shrug this pain off, even when I've gone to the ER for it. I've been to the ER 4 or 5 times with it, and am seriously tempted every other time.

At this point, I think both my primary and gastro feel that since it's in my stomach, it must be gluten related. It's not though. I've had a rough week with this pain stuff, so I have renewed vigor to figure out what the heck is wrong.

[queenofhearts]

It could be gluten related since you have so recently been eating gluten! That doesn't mean it is gluten-triggered. It could be that your gluten challenge messed with your nervous system & made you susceptible to migraine. Something else could still be triggering it. There are millions of potential migraine triggers. The big ones for me are low blood sugar & bright lights. My brother gets them from thirst.

[penguin]

queenofhearts, on Aug 30 2006, 10:44 AM, said:

It could be gluten related since you have so recently been eating gluten! That doesn't mean it is gluten-triggered. It could be that your gluten challenge messed with your nervous system & made you susceptible to migraine. Something else could still be triggering it. There are millions of potential migraine triggers. The big ones for me are low blood sugar & bright lights. My brother gets them from thirst.

Oh, no. I've had these for years. I think three years now. Even when I was gluten-free, they still happened, if not more often. I am curious to see if they happen less when I'm gluten-free for longer. I'm sure there's a common trigger somewhere, I just haven't figured it out.

[Michi8]

Just a thought...the Diest Sprite thread brought this to mind...do you ingest any artificial sweeteners? I sometimes get bloating and migraine-type headaches when I have aspartame, and sucralose makes me instantly nauseated.

Michelle

[marciab]

This is interesting. My stomach was doing this too. Feels like child birth , except in your stomach, since the spasms continue at regular intervals and get more severe if you don't take anything ??? Eventually my stomach would be in one big knot. And it would take days to get it to relax again. A liquid / soft foods diet helps it heal.

Donnatol elixer got rid of it most of the time if I caught it early. And like you, my docs were happy with that. Why do they think it is ok for us to live on drugs ??? Bentyl never worked as well.

I had my gall bladder out because I was told it could be that, but it wasn't. Imagine gall bladder surgery pain on top of this.

When I went on the elimination diet, I noticed that my stomach would start spasming immediately if I ate soy or anything with soy lecithin in it. And I tried whole corn yesterday for the first time in a year and my stomach started spasming before I even swallowed it. I spit it out immediately, but I am thinking if I had not spit it out that my stomach would have continued to spasm.

I read somewhere that stomach cramps can be from food allergies. Now, I would have never thought my stomach cramps would qualify, but evidently they did. I would have never picked up on this if I hadn't been on the elimination diet and am now accustomed to my stomach being calm.

Why I spent years seeing docs for this ($$$$$) and was only given meds is beyond comprehension. But I'll save that rant for another thead.

At any rate, this hasn't happened since getting the triggers out of my diet.

Good luck with this. MArcia

[tiredofdoctors!!!]

Hey Chelsea!!!! Two things: One -- yes, it CERTAINLY sounds like you're having abdominal migraines. My son started with them between 14 and 16 months. It took lots of doctors looking at me like I was crazy before a neurologist listened to my story and diagnosed him with that. Then, a FANTASTIC pediatrician (I switched a few times, needless to say) gave him Periactin syrup -- it is an antihistamine -- which helped lessen both the frequency (he was having them 4-5 nights per week -- throwing up all over me) and the severity of them. When he was able to talk, he DID verbalize, however, that he had a "tummy ache in his head" -- so he did begin with the headaches later on. He did EXACTLY what you are talking about, though -- the spacing out, etc. He also became very hyper -- and he was a LAID BACK kid. That's how I knew one was coming on -- in about 15-20 minutes -- BOOM.

I've had migraines since I was about 12 years old. They are called "abdominal migraines" because I throw up for a few hours, then the headache goes away. Mine are VERY infrequent now, but they are "hemiplegic" as well -- one side of my body (usually the right) gets completely paralyzed. I still get the headache portion -- and the aura and "spaciness" feeling has ALWAYS accompanied it -- and I still throw up like crazy.

There ARE people who get ONLY the aura and the vomiting -- it is NOT an uncommon type of migraine. I would suggest that you see a neurologist -- check around and talk to people in your area -- you want one who is kind, understanding and one who you can trust. But then again, you already know about what to look for in doctors!!!!!!

Also, and I'm not saying that PT is a cure for everything, trust me. One study was done on women with menstrual migraines -- meaning that they occurred at a particular point in their cycle, not necessarily during menstruation. What they found was that 99.-something percent of them had a vertebral rotation at T2-3. The feeling behind that is that because the estrogen/progesterone levels fluctuate so much, and change at a certain point of a woman's cycle, it allows for increased hypermobility in the tissues -- that allows for a vertebral rotation. The T2-3 nerve root supplies the autonomic nerve for your "puke" action (don't know a better way to put it right now!) I always call it your "puke nerve"!! At any rate, I have had MUCH success in the clinic by getting the rotation cleared, then teaching the patient how to do it themselves. That is the most important key - - the rotation WILL come back, because of the hormone fluctuation. When the patient recognizes that it's different (and they do), then they can fix it themselves.

I don't know if any of this has been any help, but thought I'd throw my two cents in!!!!

Love & Hugs,
Lynne

[Nancym]

Wow, interesting! I wonder if immitrix would work on it?

I always found my migraines were often triggered by hormonal changes. When I was on the BC pill it was hell! Caused migraines like mad.

[StrongerToday]

My doc is always reminding me that my gut is my "second brain", that's why going on the anti-depressent cleared up my stress induced D.... he says the chemicals in your brain are the same as what's in your gut. Makes sense to me.

[tiredofdoctors!!!]

Stronger Today -- I NEVER put two and two together until you just said that. My stress-induced D has completely gone away since the doctor put me on anti-depressants. What an Aha! moment. Thanks! xoxoxo
Lynne

[penguin]

OK - So I just talked to my Dr.'s PA (not the one I normally see, but they're both good) and she also just heard of abdominal migraines for the first time today (not from me). She said that what is typically prescribed is a drug called amitriptyline, which is an old old proto-antidepressant. What it does is calm down the nerves in the GI tract (instead of muscle fibers like bentyl and levsin) and prevents the spasms from happening. It's a low dose (much lower than when it was used as an antidepressant) so the side effects shouldn't be bad, except that it causes sleepyness, so you take it at about 7pm. The downside is that it's daily, not PRN. It's preventative. It's actually used as a preventative for head migraines, too. I don't like having to take a drug every day, but I suppose it's worth it if it works. I'm also only committed to it until my follow up with the Dr, which is in 6 weeks. Hell, they've ruled out everything else!

Well, at least it's cheap

I'll also add that I've run the gamut of dietary restrictions for this thing, cutting out this and that and etc and not having much happen to help it. I went on a severely restricted diet when it first started happening, since it scared the bejeezus out of me. I'm more jaded about it now In my case, I'm 98% sure that it's not food related.

[seattlecdfriend]

[quote name='tiredofdoctors!!!' date='Aug 30 2006, 09:27 AM' post='195168']
Hey Chelsea!!!! Two things: One -- yes, it CERTAINLY sounds like you're having abdominal migraines. My son started with them between 14 and 16 months. It took lots of doctors looking at me like I was crazy before a neurologist listened to my story and diagnosed him with that. Then, a FANTASTIC pediatrician (I switched a few times, needless to say) gave him Periactin syrup -- it is an antihistamine -- which helped lessen both the frequency (he was having them 4-5 nights per week -- throwing up all over me) and the severity of them. When he was able to talk, he DID verbalize, however, that he had a "tummy ache in his head" -- so he did begin with the headaches later on. He did EXACTLY what you are talking about, though -- the spacing out, etc. He also became very hyper -- and he was a LAID BACK kid. That's how I knew one was coming on -- in about 15-20 minutes -- BOOM.

I've had migraines since I was about 12 years old. They are called "abdominal migraines" because I throw up for a few hours, then the headache goes away. Mine are VERY infrequent now, but they are "hemiplegic" as well -- one side of my body (usually the right) gets completely paralyzed. I still get the headache portion -- and the aura and "spaciness" feeling has ALWAYS accompanied it -- and I still throw up like crazy.

There ARE people who get ONLY the aura and the vomiting -- it is NOT an uncommon type of migraine. I would suggest that you see a neurologist -- check around and talk to people in your area -- you want one who is kind, understanding and one who you can trust. But then again, you already know about what to look for in doctors!!!!!!

Also, and I'm not saying that PT is a cure for everything, trust me. One study was done on women with menstrual migraines -- meaning that they occurred at a particular point in their cycle, not necessarily during menstruation. What they found was that 99.-something percent of them had a vertebral rotation at T2-3. The feeling behind that is that because the estrogen/progesterone levels fluctuate so much, and change at a certain point of a woman's cycle, it allows for increased hypermobility in the tissues -- that allows for a vertebral rotation. The T2-3 nerve root supplies the autonomic nerve for your "puke" action (don't know a better way to put it right now!) I always call it your "puke nerve"!! At any rate, I have had MUCH success in the clinic by getting the rotation cleared, then teaching the patient how to do it themselves. That is the most important key - - the rotation WILL come back, because of the hormone fluctuation. When the patient recognizes that it's different (and they do), then they can fix it themselves.

I don't know if any of this has been any help, but thought I'd throw my two cents in!!!!

Love & Hugs,
Lynne
[/quote

tiredofdoctors!!!...........I wanted to chime in here and add my experience with the T2-3 topic. I have degenerated discs in my neck and know first hand about your "puke nerve" reference. The chiropractor was suprised that the nausea stopped so quickly but added " it does make sense that it could". It is a very real and correctable physiological cause.