need advice long term daily ha etc. also losing hope

hate to ask as i see some of you are still struggling so hard since i was last (yr ago) online. i need some ideas. its been 18yrs. i am now 52. clonazepam and trazadone are not working on headaches and sleep (respectively). on no preventatives-- did that for the first 14yrs. can go to the P.C. Dr. clinic for inj. 3(x)month. but ha are still daily. i just tried maxalt 9 pills for $210.00
neuro. suggested amerge 9 pills will be $258.00. any one like amerge i have done every other triptan but amerge.

also,please what can i take for breaking some of the daily pain sometimes? i would even like to try valium as you all know that feeling of anxiety that hits us when we think we are gonna miss another event or just another day of our lives. anyone have any luck with any meds. even those off label use? i am stuck. and i just found out my neuro. will not be in till Mon. been waiting over a week already.
looking for ideas in case they are out of them. (seems to happen to my neuro.s every couple of years).
thanks , rose

Hi Rose,

I'm in the same boat. I haven't found a preventative that works and I seem to immune to triptans.

I take vicoprofen daily for the chronic pain. It gets me through my work day. Vicoprofen is hydrocodone with ibuprofen instead of acetominopen. Harder on the stomach but easier on the liver.

Good luck. Boy, over $200 for nine pills has to be hard to handle!

Charlotte

hey,

thanks! i do not remember that med. i started on imitrex when it was only available in inj. form. still can't stand the smell of alcohol. stopped taking it because it felt like my chest was tight.did DHE iv treatments same results. and relpax works a little sometimes if i take it early enough.
wish i had made a list of all the meds. with all the successes/failures and side effects. no one thinks this will last when it first happens to you. and you think you won't forget stuff either. glad for your response. will really consider that and will talk to my neuro./her nurse monday. if they can't think of anything. that could be a way to go for a while.
thanks,
rose
p.s.
hate when you take a $28, pill and it does not work(like maxalt), ugh!

My neuro prefers the vicoprofen over vicoden because of the anti-inflammatory properties of the ibuprofen.

Many neuro's won't prescribe narcotics for migraines however. If that were the case with me I'd have to find a different neuro. I've been dealing with this for over 30 years and it's the only thing that I get relief from.

Charlotte

hi,

i am in WI. my neuro. i think will try it. i think i have a form from the Michigan Head Pain and Neuro. Inst. where i had to fill out a lot of info. on previous meds. that might give me more data. i guess i was feeling trapped and not thinking. the pain will mess up your memory and def. mess up your confidence to think out solutions. i like my neuro. i think i have had or consulted with eight so far. are you anywhere near me? we are close in age. sounds like you have 12 years of headaches on me though.

i am so glad you responded.

rose

Valium did not help me out too much, but it relaxes you beyond belief. If you have stress or tension related migraines it may help you however if it is hormonal ect. it probably won't help that much, just make you feel woozy and high. It doesn't help the pain once the pain has set in already. Hope this helps.

Feel better!

DR, I've been on stadol nasal spray as a rescue med, I use it when triptans don't work. Stadol is a narcotic as well. You could ask to try that. I know few people on the boards here that don't respond well to triptans are also taking stadol. It's a life saver for me alot of the time.

Its cheaper than triptans, I pay cash for my medications as well. (What they charge for 9 pills of a triptan is ridiculous; a month of topomax is even worse, that cost close to $400.) Stadol costs about $30 a bottle, but I've also paid as much as $80 a bottle, which is pricy, so you have to "shop around". Costco and CVS have the best cash price that I've found. Walgreens has the worst. Rite Aid and Sam's Club I haven't used. Walmart doesn't carry it in my experience. A bottle is supposed to last anywhere from 2 weeks to a month, depending on usage. Its not a daily usage-type medicine.

Hope that helps.

Yes, I use Stadol as well. It helps knock out the big ones that Fioricet and Codeine do not take care of. I do not use it often as it is VERY strong and I cannot do much but lay around in bed. I get nervous about walking around on it because it makes you very woozy but it does knock the pain out very well. In fact, when I got migraines that last 3-5 days and nothing helped I now take one spray of stadol, wait two hours..another spray and it is aborted.

My doctor told me it is a very addictive medication though so you have to be very careful with it but I would imagine it would work better than valium. You can find tons of info about it online.

While I hope that this works for you. One thing to be aware of - if you get referred to a headache clinic and you've been on narcotics, they may refuse to treat you. This was something that my neuro told me (headache clinic doctor) so he won't give me prescriptions for narcotics and did say that this is a practice at other clinics as well. Don't mean to be a raincloud and if this is the only thing that works for you then you do what you have to. There are plenty of other neurologists out there if one doesn't work for you.

Rose,
I just sent you a private message.

Charlotte

rose i had chronic daily with M 4-5 times week.... never found a preventive to help and tried all i have read about here.

I did receive some relief from M with imitrex relpax zomig or maxalt . almost 4 months ago started clonidine 3 x day and have

not had HA or M . it also worked right away. It has a low cost. Hope you find something soon.

Amerge is the best triptan for me. It is slower acting but lasts longer than any of the others. (Frova is a long acting triptan as well with even a longer half-life but doesn't do it for me- it is, however, usually cheaper than Amerge.)

The side effects are minimal- at least for me. I don't get any of the throat tightness or other symptoms that I got with imitrex or the other triptans including Maxalt. (Maxalt-MLT does work far more quickly, but wears off too soon and then I am back where I was.)

The price you quoted is less than I have found it for in my area. There was a time (long ago) when my insurance would pay for me to get daily Amerge and I hardly had to take any other drugs. That's when I had the highest quality of life. (Dr. Robbins has an article regarding daily triptan use that is very enlightening.) Now, however, that's long in the past.

Anna

The problem is that preventives, in my experience and studies, only work for about 46% of people, long-term(we have several studies up on this on headachedrugs.com). The issue always is, what do the other 54% of people do??..L.Robbins,M.D.

lrobb98 wrote:The problem is that preventives, in my experience and studies, only work for about 46% of people, long-term(we have several studies up on this on headachedrugs.com). The issue always is, what do the other 54% of people do??..L.Robbins,M.D.

Indeed what do we do. Live on Triptans and be thankful they work some of the time I guess...
Well for me anyway.

-hey, everyone thanks. i was feeling so down. i had not been on in a year. could not even remember my old online name. so glad i reached out. i do have a script for stadol--waited 6 yrs. to get my newest neuro. to write it. i get that some dr. can be afraid to write for it. my last neuro. trusted me. and now i guess i am trustworthy. i agree it really can knock out a headache but you do have to sleep after use. i was asked to only use it 3(x) month. that is really hard. it is just that the daily headache wears you down and i do want to only use stadol for the heartbreaking M. i get those 2-3 times a week though. looking for a non-triptan.
imitrex made my chest feel tight after 12 yrs of use. i started on I. when it was only available in the inj. form. yuck!!! i was also advised by Michigan Headpain and Neuro. inst. to try amerge daily. but my current neuro. did not feel comfortable with that. i did not either because of my heart. also now with the price of 9 pills it seems unobtainable. i think i did try clonadine. have to check my notes and ask my pharmacist to check old records. some other meds. you folks mentioned like codeine etc. i will also ask about. i have been told that our bodies change every 7 yrs. so something that did not work before could work now. thats what i have been told but it usually never works. seems like i keep taking the same lg. groups of preventatives over and over. actually, i did. i have tried some preventatives 4 times. so irritating. almost as irritating as those diets. same results. i feel so much better. being alone with this daily ha pain and multiple M. makes me go thru periods (usually one to three days of depression) glad i used this bout to reach out to you. thank you all