Migraine Sufferer 10 years

Hello all,

I am new to this forum and I joined because I am tired of not having anyone to talk to about this condition. I try to talk to my wife, but I sometimes have my doubts as to whether she even believes it is bad as I say it is. Don't get me wrong she's super supportive, but there gets to be this look on her face if it gets to be the point that I have to seek medical attention as if its an inconvenience, which it is... But anyways I just want someone to talk to. I have seen a neuro, diff PCM's and tried almost every prophylactic and abortive drug on the market and none have been very effective. I am currently on 50 mg topamax daily and max strength max a lot mlt for abortive therapy. I average 2-3 a week and about one a month that is uncontrollable where I have to go to the ER. My most recent experience at the ER almost made me choke a doctor... But that's another story. My current doctor tried 5 350 Percs but those don't really work for my headaches and I don't think he believed me oddly. He then tried 7.5 350 Vicodin and that seemed to work better, but they just come right back. So now I don't know what to do. I think the stuff they give me at the ER is overkill frankly, dilaudid and phenergen. There are other less dopeful things to use, but asking that question at an ER well you all know what I mean right? Well anyways bottom line the best thing I have ever received hands down to abort my headaches is nubain. Anyone else have any experience with this? Has anyone ever been prescribed this? I heard of some negative reactions, but I never had any. I am going to schedule to see my neuro and I am very very nervous about asking about this medication especially considering the way I have been treated in the past. Any thoughts?

Hi, and welcome to the board. Maybe your wife needs some education as to the seriousness of migraine headache disease. Do some googling and look for a good article or two. Try to share it with her in a way that she'll understand you want her to understand what you're going through, not condescend. Also, don't forget to check in w/ how she's doing, remember, she may not be suffering the way you are, but everyone suffers. See her suffering.

Dilaudid is why you go to the ER!

As for Nubain, it's no longer available as a commercial product. The generic (Nalbuphine) may be available as an injectable. If you have a trusted relationship w/ your neuro, you should feel comfortable discussing any medicine w/ them, particularly one you've had experience with. If your neuro has already prescribed Vicodin and Percoset, then they are comfortable w/ opiates. I don't know why they wouldn't be open to Nalbuphine, (assuming you can get it). Yes it's an injectacle, but so what? Millions of people inject insulin multiple times a day.

-Platy

I thought there was someone here recently who'd gotten Nubain at the ER...is it the one that interacts with narcotics and disables them? If so I'd be cautious with your history of narcotic use...instant withdrawal isn't always safe.

Yes, Cindy*W shared recently (hooray for multiple browser windows). Here's the thread: https://migrainepage.forumotion.net/t4148-the-dreaded-er-visit-last-night

Otherwise, welcome to the forum, and sorry you're at the point that you had to hunt us all out.

I'm not dependent on narcotics neither physically or mentally so there is nothing to withdrawal from.  I had a nurse grill me for 5 min in the ER one time telling me how's he wasn't going to clean up my vomit if I started going through withdrawals etc... So I was like, that's great give me the shot! Lone behold I was fine lol.  I don't use narcs for migraines because they don't work for me except the really strong stuff they give me at the hospital and nubain of course which doesn't make me feel like I want to sleep for 10 days... I was speaking past tense on my prescription usage.

Thank you for your comments by the way, I hope I didn't sound like I think my wife doesn't care or anything like that. I know she understands, she just can never fully understand because she doesn't deal with this condition. It's like I can't relate with what a cancer patient feels because I have never felt that kind of pain, I can only imagine what that feels like with my limited knowledge of my kind of pain. It's the same way with my wife in my condition she can't know nor can she understand how this feels. That is why I am here because reading your posts are like reading my thoughts sometimes.

I'm glad you're at a point where you're not narcotic dependant, sorry if you felt I was assuming you were. With Cindy's experience and knowing that many of us do take narcotics either regularly or on a scheduled basis, I'd rather insult and warn someone then put them into unexpected instant detox, since that is terrible.

I completely get the understanding group thing. DH gets migraines, has since he was 12, but his are tension/stress induced and rarely get to the 'Colt 45' phase. (Once again, sorry if it's graphic, but it's a descriptor I picked up that's so fitting for the level 10 migraines.) I was an adult before I started getting migraines, but mine are more severe than DH's and since April they've been terrible (thank goodness for FMLA).

Just since a medicine change in December I've been starting to get my life back, and am now beginning to have more good days than bad ones. This is the 7th or 8th preventative medicine change since last April, but now things are trending positively, not negatively. I hope that you can find something that helps you too!

welcome painsux (yes, it surely does).  i am a 73-yr old woman, still working p.t., who has had migraines for 45 years now, now daily.  my husband never understood, and now of course, he's my ex.......and married to another woman who has them.  karma!

i just wanted to chime in on this post.  i can't fully comment, cuz i can't read the big blocks of type.  you can edit your post by hitting enter TWICE, after every couple of sentences.  that way, more of us can read it thoroughly.

here's my suggestion:  read two books.  get them from your library system if possible.  1.  ALL IN MY HEAD, by paula kamen.  2.  WHY WE HURT: the natural history of pain, by frank vertosick, m.d.  

neither is brand-new, both are highly readable.  both were written by migraineurs.  the first focuses all on migraine, and the second very enlightening book has many chapters on different kinds of chronic pain, including an edifying one on the author's migraines.

he speaks the truth; narcotics don't work at all for many migraine folks.  me.....i just throw up a lot in spite of being given anti-nausea drugs along with the narcotics, and the head pain isn't even touched.  i rely on the triptan class of drugs.  i don't know if you've tried those, specifically.  (you said you'd tried many abortives.)

good fortune to you in your search for help and understanding.  honestly, most of the people on this forum, which i've been reading for 17 years, know WAY more than most doctors about this issue, even neurologists.  that may sound arrogant but it's unfortunately true.......dianne

p.s. i've had the urge to choke doctors at the ER, too.  my vow is to never return, because they never help anyway.

Painsux,

I understand what you are going thru.

Have been dealing with Migraine since 1991 and have been to more MD's, Neuros and Headache Specialists than I can count.

Was with my last MD for 13 years and then a year ago he went to practice elsewhere and left me with nowhere left to go but Pain Management.

It's OK but I wish there was some other way than to take daily narcotics which I hate.

I am so glad that you don't have to be on that rollercoaster cuz it isn't fun.

Nubain works great for me too as long as I am not on a long acting narcotic.

For years I took three Percocet a day and could take nubain just fine.

One thing you might ask your Doctor about is Stadol Nasal Spray.

It is widely used for migraine and is basically the same as Nubain.

You can get it at just about any pharmacy so it might be worth a try.

Some people get good results with it.

My husband kinda reacts the same as your significant other when I have to go to ER.

But, truthfully if I didn't have them myself, I am not sure I could appreciate how bad they are either.

Good luck and let us know what you and your Doctor decide.

Cindy