I suppose the migraines you experience now could be related to your colectomy/j-pouch, but probably more because of hydration levels (borderline dehydration) than anything else. Plus, don't dismiss the effect of menopause and your still variable hormones.

There are so many migraine triggers out there, it is a literal mine field! My husband also suffers with migraines. In addition, he has UC and IBS. It took many years for him to conclude that his primary migraine trigger was weather changes. Every time the air pressure rises or falls quickly, a migraine comes on. For a long time, we thought this was sinus/seasonal allergies (which is also present for him), because often antihistamines would reduce the migraine intensity. But, after careful observation, it was clear these were weather related.

Like you, he has to be careful with pain meds and Imitrex (he takes the oral), because of rebound.

I suggest you keep a diary of your headaches and any possible triggers (food, activity, travels, changes in routine) and see is there is a common thread. You may not be able to totally prevent the migraines, but if you can identify your trigger(s), you may be able to reduce the symptoms.

Good luck!

Jan

Thank you Jan -
I have kept an extensive diary and no connection. It is the strangest thing I can actually feel the inflammation start in my neck. It will start to ache (feel like a bruise) and then in a couple of hours BAM! I have a full blown migraine. Because of the UC and years of fighting this battle I did eliminate all the triggers. Now, I am not sure except all food! My activity during the outbreaks is usually I am sleeping and going to bathroom a lot. Also, since the surgery I have not slept a full night and I believe that may be a BIG trigger. However, I cannot seem to get my body to stop going at night (very active). So...I am left with this hell back and forth monthly along with anal pain/burning. I cannot catch a break! Losing hope today!
Thanks for your response!
Roberta

I have had great relief from high potency magnesium powder I have heaped teaspoon morning and night have had monthly migraine for from the beginning my naturopath has me on this product, having a jpouch the powder is absorbed better, also keeping up the hydration . Both my daughters have the same problem this last month gave a bottle to my daughter to try this month no migraine so looks promising worth a try the naturopath said having it just before bed helps the mussels and sleeping problems , I am usually up 3 to 4 times for the toilet also were working on that at the moment .

Oh thank you sudie! I had to stop my acupuncture/holistic health dr. I make sure I am always hydrated but when migraine starts and vomiting no luck in getting hydrated. I will definitely go out and try this remedy. I am so desperate! Thanks a million!

Roberta

I got migraines so bad my Neurologist has me taking Topiramate twice daily. He increased the dosage at 25 mg and worked it up to 100 twice a day until most of my headaches have stopped. I'm hoping to ease off of it the same way and have no idea why they started up again other than the stress of all of this. The only other time I had migraine headaches was during another very stressful time in my life when one of my children was very ill and I didn't receive much sleep.

My Internist ordered a CT of my head before referring me to the Neurologist as I was having almost daily headaches.

RLC, I think you are right about the broken sleeping patterns as I too rarely sleep all night. Have you tried Anucort for the night time burning? If you don't have cuffitis maybe you could benefit from it anyway.

TE Marie it is the strangest thing but I am trying magnesium for now. I have had chronic migraines since I was 18 years of age. I have tried every medication for migraines throughout my life. Always got them on a monthly basis. When I was pregnant with my first..a boy...had them until I delivered then they stopped. He had cancer as an infant and never got one migraine at all throughout the process with him (he is 24 now and doing fine). Then got pregnant two years after having him and after my delivery with my daughter...BAM...the migraines came back on a monthly basis. Always thought that they are hormonal. Now, after all surgeries due to UC, still having issues went into menopause after the last takedown...BAM they are worse. SO...left with "what the hell is going on".
I still have problems with going with j pouch...going all the time! Had to go back and see surgeon and back on canasa, anucort or proctofoam when having trouble. My lower half (if u know what I mean) was a mess. Who knows? I still do not think this surgery has solved any issues for me. Just the bleeding and going 20 times has disappeared. Now, I go 4 to 10 times a day some spotting of blood at times. I may get one to two weeks where the j pouch functions nice and then two weeks of hell along with the attack of the migraines. I have my surgeon stumped. What have I solved?! Still feeling frustration but making the best out of this!I do yoga, have gone to acupuncture changed diet and still have these attacks. That is why I question if it is Crohn's after all. Still trucking along!
Thanks for the info.
Roberta

I forgot to add I take a Malic Acid & Magnesium with MSM and Olive Leaf Extract supplement for my fibromyalgia that furnishes way more than the daily requirement of magnesium not including what is in my "over 50" multiple chewable vitamin. Beware magnesium may increase your frequency...

12/29 is the 3rd anniversary of my take down and I left the after care of my surgeon at my first annual check up when he gave me a 2 week supply of anucort and said I had a little inflammation at my cuff. I went in telling him I'd had a stool full of blood 3 days before the appointment. I should have gone to see m GI before then. My GI sent me to a GI specialist at Mayo as he could not get my Cuffitis to go away after 5 months of treatment. I'd also had c.diff the surgeon missed. I have chronic cuffitis and IPS plus adhesions. Thank God my Internist realizes the pain I'm in and prescribes pain medication. I can tell exactly when cuffitis is starting up and it usually is if I have not used canasa for 3 days in a row. It's all a dance of frequency and ability to use the medication for the proper 3-4 hour minimum. Sorry if that's TMI. I also use anucort when things are really burning. I also have to take courses of Augmentin for the IPS, as it acts like Pouchitis, when necessary. Then there are the not too frequent but more than occasional partial blockages around my stoma scarring area. This is all overwhelming at times but it is what it is.

It's taken me 3 years and the help of some awesome people here and doctors to figure this all out. I feel so much better just knowing what is wrong and what I can do about it than before when I didn't know what the he## was going on. Hopefully my pouch will grow up and quit acting up but I doubt it will Hang in there, things will get better.

I'm glad your son is doing so well! My son is 33 and had a procedure at 15 that made him as good as new. They just had a beautiful baby girl 3 months ago, so life is good

Since my surgery I too have been having down right awful migraines. Just like u describe.I have tried everything from supplements to acupuncture. I wish I had the magic answer for relief but I can sympathize.

I wish I had the answers to this but I don't! I just keep on experimenting and plugging along!

Roberta

Sorry to be coming in on this thread so late, but I read this and could completely relate. I thought I was the only one with this problem. I woke up from my first surgery over four years ago with the worst migraine ever (it made the pain at the surgical site seem like nothing!) I continued to have them more frequently than usual. When my father-in-law passed away a year ago, I began to have more migraine days than non-migraine days each month and it's been that way ever since. I'm actually pleasantly surprised when I wake up without one. I'm sure most are rebound headaches from imitrex and sumavel overuse. I knew that my lack of colon and increase in migraines were related, yet I have yet to have any GI, surgeon or neurologist confirm this. Is it the lack of colon, the UC or the j-pouch that's the primary culprit?? In the meantime, as tough as it's been, I've decided to sweat most of them out by refusing the meds and by pressing wet washcloths as hot as I can stand into my eye sockets. I've heard good things about Botox but my first round in my neck didn't provide any relief.

Aaaand I realize I've posted about this before. I actually STARTED A THREAD about this. I guess the chronic physical and emotional pain during years of this journey have done a number to my memory!

I started seeing a chiroprator in Jan of this year after reading an article about how after three months adjustments can help your migraines as well as meds? My dr also gives me laser treatments in my neck. So far in 5 months. Only had to take my migraine med twice. I still get headaches but with a little tynelol I'm good to go. The FDA just approve Celfy, a devise u wear on your head with magnets to
Recent migraines.

I keep coming back here too. Most recently I went to the ER thinking I had a heart attack has brought me all around back to visiting hydration, migraines, chiropractors, neurologists and the whole merry-go-round. I've been going to a wonderful atlas chiropractor for years that "cured" my former headaches and I still go to her to keep everything in alignment monthly. I went through menopause before my j-pouch surgeries and had no migraines. I've been on extra magnesium for fibromyalgia long before the j-pouch too. My migraines came "after" my j-pouch and I still have headaches with all the migraine medication, just not as bad. They occur when I wake up in the morning - when I am parched and reaching for water. I'm going to discuss all of this with my GI at my next appt at Mayo in July and also with my neurologist a week later. I think it's all related to hydration. I've been investigating it with new since last week, when I thought I was having the "big one" - seriously, it was scary. I've decided to count potassium like it's calories and to keep hydrated as best as I can. I have no problem with the salt, sugar and water side of things. I still need to do further research on the other "daily" hydration requirements but have a suspicion I've been over drinking water and washing some of my hydration away. Why they didn't give us more guidance on this and many other things drives me bonkers. Medical doctors just don't learn or pass on much about nutrition, in my experience anyway.

I have high hopes of getting off of the migraine medication I am on as think it affects the amount of other medications I take etc. etc. I'm sure I'd feel much better.