First I just want to say that MORE and MORE everyday this disease pisses me off! GRR!
I had a baby in Sept and about 2 weeks afterwards, I got an AWFUL headache. I was crying in agony for 6 hours. I had taken tylenol (which is the only OTC med my GI likes me to take) and it didn't help. Because I have been in remission for almost 2 years, I had no pain meds in my house to take. I attributed the headache to really low iron levels. I knew when I got out of the hospital my Hemaglobin was 7 so I made an appt with my GI right away. I have had iron infusions before and the headaches came along with it. I had more blood work and my actual iron level was 19 and it should be 50-150 I think. I got 6 iron infusions by IV over 3 weeks. The headaches got better so I didn't think much about it until they started coming back in Dec. At that time I noticed that the headaches were coming when I was on the computer or watching TV so I made an appt with my eye dr. Couldn't get in there until Feb and he said my eyes were fine. Also told me that what I was describing were 'classic' migraines. I tried a few home remidies but none of those worked. Then I got sick and thought my crohn's was flaring so I went thru the steps with my GI, had some tests, dx'd with gall bladder disease and had the surgery to have it removed at the beginning of April. Went last week to see my GP as the headaches were just taking everything out of me and he prescribed imitrex. To my surprise, they worked within an hour of taking the first pill. I'm not sure what standard dosing is, but he said I could take 1 100mg pill and 2 hours later take another if migraine wasn't completely gone. I was ecstatic that they worked!! He made me an appt with a neurologist just in case they didn't work but the earliest they can get me in is July 16.
Saturday I call my GP's office to see if he is going to write me a full presciption or what since the imitrex seems to be working. The nurse tells me that the 9 pills I got (with no refills) is a one month supply and most insurance agencies won't cover any more than that. GRRR!! I dont understand why he didn't explain this to me when I was in the office. I know it wouldn't have changed anything really, but at least I wouldn't have gotten my hopes up in thinking that they were going to work for me and that was that. Now I think I am going to have to see this neurologist in July which is awhole other hassle. I am sure people here understand that when you have crohn's, you get sick of being sick and having to go to the dr and all this all the time. It just gets old!!
The nurse did call me in another prescription and my insurance approved it for the same co-pay as the first. From my understanding these 9 pills can cost upwards of $200 and I only had to pay $10 so I'm thankful for that!! But the nurse also told me this has to last until July and I only have 2 pills from the first set left. So basically 11 pills to last 2 months when I am getting these migraines at least once a week and they last 2-7 days at a time.
And on top of all that, I am reading on the migraine forum that this may be linked to crohn's or low b-12 levels (which I am going to have checked at my next GI appt). Anyone who ever said this disease isn't complicated is crazy!
Frustrating... thanks for listening!
Fibromyalgia DX March 2003
Crohn's DX Jan 2006 (Symptoms since 96-Misdiagnosed as "female" problems-Major flare during pregnancy in 05 which lead to DX)
1st resection July 2007
Currently on Remicade/8 weeks
Posted 5/18/2009 2:17 PM (GMT -6)
Just a few things from a migraine sufferer (new as of a few years ago, I suppose its due to the CD or one of the meds or low B12 or something, who knows?). You can get Imitrex by injection (pens, like insulin) and its available as a generic, I can get 4 shots per month from my insurance, more powerful than the pills, so you might need it less. I also could only get 9 of the pills per month and they are way too expensive. You can ask for Fioricet (sp?). That I have not had my insurance give me issues with, and it was a life saver when I was having a marathon Migraine last fall. Also, you may need to be on a daily preventative medication. I take Topamax, but there are others available. I have also had to have occipital nerve blocks twice to stop migraines. Once last fall, and one last Friday. It sounds scarier than it is. It does a pretty good job of stopping the migraine, but you feel like you got hit in the back of the head by a 2 by 4 for a few days. But since I had a migraine that lasted for 12 weeks each time I'll take the back of the head pain for a couple of days, though it is kind of a last resort.
CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!
Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....