Opioids Abdominal Migraines / Cyclic Vomiting Syndrome and managing the pain

[painpatientNY]

i am newly registered to BL and wondering if anyone has experience with Abdominal Migraines/Cyclic Vomiting Syndrome and managing the pain. i just got this possible diagnosis. the issue started 15 years ago at age 12. first time morphine didn't touch the pain. they had to give me dilaudid. this has ruined my life and dreams. i do have rather good pain tolerance for most types of pain but not this. for example ive had my face smashed completely which took 6-7 hours of plastic reconstruction surgery to fix and that was NOTHING. i wasn't even going to goto the ER until at my normal doc appt i was told i could die from infection. i would like to get off opiates but for now they are my only source of relief. without i would be bed ridden and prolly suicidal. anyone have any experience with long term undiagnosed stomach pain? please help!

 

[Eva 33]

I have severe chronic migraines. I have nausea, but not the abdominal migraines that you describe. I have just about every other symptom of migraine, though, and I am in CONSTANT severe pain. Yes, the pain is excruciating. The opiates do help a fair amount, though. You just need to find a sufficient dose.

I see a good pain doc who prescribes Dilaudid ER and also short-acting Dilaudid for break-through pain. Did the Dilaudid not help your pain? Perhaps you weren't given a sufficient dose of either Dilaudid or morphine before that.

Yes, I too would be bedridden and suicidal WITHOUT my pain meds. At least now I can function at a basic level due to opiates. Chronic pain can be a very difficult thing to adjust to emotionally. Before my migraines went constant, I had months-long breaks from the pain where I could do fun things like take vacations. But for the past 2 years, I have been in severe pain 24/7. I feel sad about saying goodbye to future vacations, but that may well be my fate.

Definitely find a good and experienced pain specialist. Mine literally saved my life. Good luck to you.

Eva

 

[brutus]

I've had undiagnosed stomach pain and literally no opiate regardless of dose would remotely kill the pain.

 

[painpatientNY]

i am on morphine now. ER only i need alot though. i am on 100mg 4 times a day for the last year. i get them from my primary who is a Nurse Practitioner. i really wish icould use marijuana also. it helps alot but i will be ripped off the pain meds which have kept me out of the ER for the last year. used to be in there 4 times a month on average to get dilaudid shots. now the ER would be a waste of time anyways with my tolerance. i hope that i can find non narcotic meds to help. i hate being dependent. i feel like the docs always have something to use against me and hold over my head. also i feel its time for a dose increase but dont wanna ask. i hate how docs have to fear the DEA and FDA. makes things so difficult to get what i need.

 

[Livinginthealps]

I feel your pain brotha, I truly do. I had a pretty severe stomach condition starting after an emergency abdominal surgery. I never quite healed completely but just associated the surgery with a long healing process. A year after my surgery I could not gain weight. I weighed 118 lbs when I normally way close to 140. I was throwing up multiple times a day and the nausea was horrible. The pain made me miserable and I could not take it anymore. I did every gastro test possible and they finally came to a conclusion I just was not digesting food. My stomach was basically paralyzed. It's been about a half a year since I have been officially diagnosed. I currently am on fentanyl patches for my pain and oxycodone IR for breakthrough pain. I just recently had my patches prescribed to me by my new general practitioner (my other doctor is 3000 miles away) and both doctors at first were hesitant since my problem has to do with slow digestion and that is a major side effect of opiates. But, they both understood my pain and have been great help since the beginning. I am in my early 20's and I definitely do not want to be on pain medication for ever. Although, if thats what it takes to live a normal life then so be it. i do understand the stress behind having an undiagnosed stomach condition. It will get better for you. What exactly is an Abdominal migrane? I never actually heard of this and thats how I describe my stomach pain sometimes so I found it to be interesting this is an actual condition.

As for the poster above me, unfortunately these doctors have a reason to be scared of the DEA after the years of pill mills. I strongly recommend you finding a DR and not just a nurse practitioner. I'm kind of surprised she has been giving you morphine all this time.

 

[Swimmingdancer]

I thought "Abdominal Migraine" was just abdominal pain of unknown origin with NO headache? (usually in children). "Abdominal Migraine" is a really vague archaic term, I didn't realize it was even used anymore. *EDIT: A different source says it IS often with an accompanying headache, so maybe that's what you mean? Yet another source says it is "a disorder that occurs in children, and does not generally accompany a headache but may evolve into migraine headaches in adulthood". So I'm still confused.*

Cyclic Vomiting Syndrome, on the other hand, is recurring attacks of intense nausea and vomiting, and sometimes abdominal pain, which is often accompanied by headaches or migraines.

I don't understand if you are just trying to say you get abdominal pains and GI symptoms both with and without headaches or if you are using the terms synonymously or what? Maybe a more detailed explanation of your symptoms would make it more clear

I am pretty sure I have the same thing as you, but I can't really answer your question without understanding what you are talking about.

 

[painpatientNY]

i get severe pain with vomiting. i even used to force myself to vomit to get 1 min of relief. at first it was every couple months but over the years got more frequent. i now have a baseline pain level then flare ups. it usually starts as soon as i wake up. and usually there is food that i feel should be out of my stomach. it continues for days if i don't get relief and i end up throwing up bile for days.

 

[Swimmingdancer]

That's awful. But you do or don't get headaches?

 

[painpatientNY]

no headaches

 

[Livinginthealps]

i get severe pain with vomiting. i even used to force myself to vomit to get 1 min of relief. at first it was every couple months but over the years got more frequent. i now have a baseline pain level then flare ups. it usually starts as soon as i wake up. and usually there is food that i feel should be out of my stomach. it continues for days if i don't get relief and i end up throwing up bile for days.

Sounds like similar symptoms. Have you done any tests? If so which ones?
Sounds like your not digesting your food fast enough and its just sitting in your stomach. Have you heard of gastroparesis?

 

[Nestars74]

I have been diagnosed with cyclic vomiting syndrome, gastroparesis, and abdominal migraines. When I get attacks they are so bad I faint from the pain. I usually have to be hospitalized for 2 to 3 days. It started 5 years ago and I was at the hospital 3 to 4 times a month. Now it seems like 2 to 3 times per year. Does anyone have any ideas on what to take when I feel an attack coming on to try and nip it in the bud? I am on many medications daily but, when I have an attack i can't hold anything down. Help!

 

[Hodor]

I have been diagnosed with cyclic vomiting syndrome, gastroparesis, and abdominal migraines. When I get attacks they are so bad I faint from the pain. I usually have to be hospitalized for 2 to 3 days. It started 5 years ago and I was at the hospital 3 to 4 times a month. Now it seems like 2 to 3 times per year. Does anyone have any ideas on what to take when I feel an attack coming on to try and nip it in the bud? I am on many medications daily but, when I have an attack i can't hold anything down. Help!

A friend of mine suffers from CVS and the only thing that works for her nausea is Ondansetron ("Zofran").

 

[tightlywound]

huh. I get bad stomach pain after eating that often causes vomiting ...well kind of ...I often practically make myself vomit because after throwing up I will feel better for a short while, but it is not hard to induce. this started at age 14-15 and for several years I saw GI docs that did nothing helpful and offered no diagnosis.
opiates do help me. they also help my crippling back pain (herniated disc, fractured disc and severe scoliosis). unfortunately I will never get pain meds because I have an addiction history.
they would rather watch me suffer.
at least your doctors are trying to help you.

side note -- your nurse practitioner prescribes opiates?? here even an ARNP cannot prescribe schedule 2 meds, must be an MD. huh.