Almost Daily Migraine For A Year...Any Help?

Hi! I am a 39 yr old from Iowa (USA). A year ago this month I started getting a daily migraine. Everything my local doctor tried failed. I was sent to a neurologist. He treated me like my headaches were a waste of his time, and half heartedly threw meds at me until he gave up in January. He gave me a referral to the University of Iowa Hospitals and Clinics (UIHC). I will be scheduled for an appointment with them sometime NEXT january. Started in again with the regular drs. One was convinced that if I saw a counselor everything would be well. He gave up when I told him that I'd been seeing a counselor every 2 weeks for 15 years. My normal dr is currently trying amytriptaline 100mg (sp?) and topomax 50mg 2x daily. I have tried both meds before, but not together. I was just increased today to these dosages. I have had adverse reactions to all of the common migraine preventatives. Today I flat out begged my doctor for something to make the pain go away even for a little while, and was refused. The prn shots they give me when the pain gets really bad (tordol and compazine) are no longer effective. When I can afford it and find it I smoke pot to help with the nausea and it seems to decrease the pain some, but nothing works for more than a couple hours. I would appreciate any and all suggestions.
Sincerely,
The Newbie

welcome to our most wonderful forum. i've been here 14 years (depressing?) and could not do without it.

i just typed a longish letter to you, and then hit something to make it disappear. grrrrrrrr. this is part of my ADHD, i suppose.

an hour ago i returned from a 9-hour work day, at age 72, (and no, i can never quit, moneywise). so you see that i must be pretty functional, in spite of my fibromyalgia and chemical sensitivity and M's. it's a tough world for some of us!

if you could hit "enter" twice, after every couple of sentences, more folks could read and respond. we can't read big blocks of print very well.

it makes me furious when i hear of scenarios like yours. but please don't feel you are alone in the rotten way you have been treated. this has happened to lots of us, unfortunately.

we don't really give advice, but suggestions. mine would be for you to dump the neuro you went to, for sure. you must find someone with a real INTEREST in migraines. find out if the january person is that guy or gal.

pain drugs do diddly for me, and i've had this monstrous neurological disease for 43 years. believe me, been there/tried that. don't let all this depress you; many people have found real ANSWERS.

be sure to try the triptan class of drugs (imitrex was the first one, almost 20 years ago. i was the first one in line!) that worked for me for 4 years; then quit. now i alternate maxalt and amerge......there are seven drugs in this category, the only ones designed JUST for migraine.

i would have had no life without them. please give one or more a try.

best wishes, dianne

p.s. it also makes me fighting mad when doctors run out of ideas and tell you to get counseling. sure, counseling may help in some ways, but this is a neurological disease. read and get ideas here.

Thank you for your reply. I have tried several of the triptans with little to no results.

I am glad you have had sucess with them. Pain killers (i.e. Lortab, perocet, ect.) offer 2-4 hours of relief, depending on the potency.

At this point I will take what I can get. I do not see my current med combo lasting long, as I start insulin injections tomorrow, and topomax takes my appetite completely away. Very bad mix.

"Freak"

Sorry you are having ese problems, but welcome to our community. We know your story all too well.

Definitely try to find another nuero. January is too ridiculously long to wait in a situation like this. Not sure what all drugs you have tried, but don't give up. Different things seem to work for different people. The same is true of pain relievers. I take Frova and oxycodone, which at least seems to take the edge off.

Thanks for the welcome!! I had never heard of Frova before your post. I will suggest we try it the next time I go in. (in two weeks) So far today the headache has only gotten to a 2 so i'm calling it a good day!!

"freak"

Weclome to our forum.
I am so sorry to hear about your pain and even more so, about your doctors attitude.

Triptan - sumatriptan - is the only thing that still works for me after many, many years, even if nowadays it takes longer to take effect it is a lifesaver.

I am also on Neuronting (Gabapentin) ptreventative which does help with reducing the level and frequencey of migraines.

One thing which is important to know is, that we all react differently to every medicine, and therefore it is only by trial and error that you might find what works for you best.

I know for example that many people are prescribed too low a dose of say Imitrex (50mg), so it does not seem to work, but works very well at 100mg dose.

It is the same with Topomax and Neurontin, you need to increase the dose slowly, very slowly, until you find a best dose for you.

BUt do nto give up, many of us found the best solutions only after several years of trying when we have almost given up any hope.

I also find that steroid and lidocaine injection at the back of my head into occipital nerve, have been quite effective, so you might try to find out more about that.

Keep us posted and good luck
Mini (UK)

Thanks for your reply. Unfortunately, gabapentin worked great on my headaches, but made my hands and feet go numb to the point of pain.

They have tried me on the highest dose of Imitrex, and still all I get is a neck ache in addition to the migraine. I also have had no luck with Amerge or Maltrex, and so the dr has given up on giving me that class of meds as a prn. I currently have nothing as a prn.

I am thinking of writing him a letter today (so my emotions stay somewhat out of the equation) asking again for some pain medication. These M's haven't just ruined my life, but have also affected the lives of my loved ones.

"freak"

Welcome , your story is similiar to many. I have seen doctors seem to lose interest. keep trying other doctors.
Have you tried any SSRI type meds for preventive?. Some doctors start there first. Along with a calcium channel blocker or beta blocker.

Do not wait a year for that appt. they dont have a secret cure for this. Try a higher dose of triptan. Try all your meds long enough. I got some relief from daily HA/ M but it took several years and I quit several times.

I recieved some good treatment at a local " free " clinic as they never rushed in and out and had different Neuro dr. volunteer there. They also had free med samples. always ask the dr for samples they have them. I hope you find some relief soon.

Start keeping records of all visits and discussions and meds tried.

Hi,

I agree with the others- January is way too long to wait for an appointment. Is there a way you can get on the cancellation list? You may also be able to get the name of another neurologist who deals with headaches or migraine at the University Hospital.

I have been dealing with chronic, intractable migraine/New Daily Persistent headache since age 17, I am now 31. I have been to countless neurologists, the Diamond Headache Clinic, MHNI, and Jefferson Headache Clinic. I have no idea how many medications I have tried for migrraine. When I was 21, my neurologists and I decided that it would be better to try and control the pain and symptoms with pain medication as well as two preventatives- Zoloft and Zanaflex. When I was 24, I had an occipital nerve stimulator implanted- it basically acts like a pacemaker for the nerves in my head. I had a period of remission after that, but I did have pain medication I could take when it got bad. I was also able to go for an IV of Depakan if it got too bad.

I hate the fact that you are suffering so much. It also seems odd that your doctors seem unwilling to treat the pain. It certainly sounds like you need something for the bad ones. Or at least something to get you through until you are able to see a specialist. I know that oral toradol is available. You could also ask about other prn medications- maybe ultram, which is an anti-inflamatory.

Please seek another opinion.

Please keep us posted.

pain free days,
sailingm

I also recommend trying supplements. I take 400 mg of magnesium and 5000 mg of vitamin D daily. All my neck and shoulder pain almost disappeared. I also take a bioidentical progesterone which works well for women. These cut my migraine days significantly all by themselves with out any of the bizarre side effects I got from prescription med preventatives (which didn't help the headaches either).

Thanks for everyone's suggestions!! I give every med at least a month, if not longer, unless I am getting an unbearable side effect from it. The triptans I have tried (Amerge, Imitrex, & Maxalt) I was told were the highest doses I could get.

Friday I hand delivered a letter to my dr's office which stated my rebuttals to his 3 biggest concerns regarding putting me on narcotic painkillers for my M's. My biggest point (i felt) was that as long as I was making an informed decision, that it should be MY decision whether or not to try them. Guess we'll see what happens now.

I have tried many of the mental health drugs that also help with M's, but either they offered no help, or I had adverse side effects. Unfortunately, I'm not an easy patient on a good day. I have a great personality, but my body is picky...lol

I hope the headache monster is leaving you all alone to enjoy your weekends.

"freak"

Well, My M's are staying at about a 2 with my current regimine of Verapimil, amytriptiline and topomax. We had to add my cymbalta back into the mix as I kept crying and started having suicidal thoughts. (Talk about scary!!) Now, we can't go higher on the amytriptiline, but for the moment I'll take what I can get.

Thanks to the decreased pain, we have tabled the painkiller discussion for now.

I actually was able to blare my car stereo for a little while yesterday...I'd forgotten how much fun that was!! Hope you all have found a pain free moment or two as well!!

"freak"

Well, the cut-off date for this med combo is tomorrow. Other than giving me some great sleep, and reducing the pain a little, it's a fail.

The Dr DID finally give me 10 whole Percocet to get through all of my daughter's graduation functions. Thankfully I only needed 3 of them. He also finally gave me a PRN for the nausea.

I am almost scared as to what the next med combo will be. Mentally, I'm not sure I can handle another set of side-effects. I'm hoping my increased depression is just a side effect of the amytriptiline and not a permanent thing. I seriously dislike the overwhelming feeling of dispair.

Today I told my counselor I envied a cancer patient because when they got tired of fighting they were given meds to make them comfortable and sent home with the knowledge that in a few weeks or months the pain would all be over. For me there is no end in sight, just another set of meds and side effects that may or may not work. I actually had her speechless.

Sorry to be such a downer, just wanted to give you all an update. I will try to get on tomorrow and let you all know what happened at my appointment!

"freak"

Really can't call you freak, so Hello Honey,

Back track.

What changed a year ago?

Did you hit your head, creak your neck, change your diet, house, place of work?

Have you got a new dog, cat, carpet, paint, car?

Do you play a different sport, new shovel in the garden putting different pressure on the spine?

New prescription for glasses?

Did you have other pre-existing conditions before the migraines? eg has another condition ramped up?

For myself, migraines crept into my life and gradually became more frequent. The suddeness of going straight to daily seems to indicate a cause - allergy, injury, upgrading of another illness??????

It gets very hard when in pain to stop and think what is behind it all but do try to. Even ripping out new carpets or changing jobs if you think it might be a "sick" building is worth it to get rid of pain.

Hope this helps.

It's ok. "Freak" is a name I use on a gaming site and many people there don't use it either...it is purely in jest. I have battled with M's on and off for 20 years, but a year ago they suddenly became daily.

Nothing new, no injuries, no new stressors, NOTHING. Not even a new food. I have the local dr stumped, but unlike the neuro who quit, HE at least is willing to keep trying until I can get into the only headache clinic in the state.

I thank each and every person on this site for their support! I don't know what I'd do if this had happened 20 years ago and I hadn't been able to find you guys. I would truly have been alone!!

Peace, Love & Cheerios!!
"freak"

Well, we have increased the topomax, decreased the amytriptiline and increased my anti-depressant. we are giving this another 3 weeks to see if it will do any good, before moving on to a whole new set of meds. Wish me luck!

"freak"

Tartrazine is my trigger. It's a sneaky one - it's yellow dye that's in some foods, as well as cosmetics and some pharmaceuticals.

You can read more about it on wikipedia - the page there is very comprehensive.

It just sounds from your description like it was an infrequent trigger for you, maybe in ice cream, or pickles, or powdered drink mixes, giving you migraines on and off. And then maybe you bought a new eyeshadow, or shampoo, or hand lotion, or multivitamin? Something that you use almost every day, and has tartrazine in it?

It's worth checking out. Again, wikipedia has all the info you need.

Good luck!

Hi there,

I just wanted to say that I feel your pain. I'm currently living in the world of almost daily and it kind of sucks at times. My advice to you is to keep trying different treatments, always. Never give up. After all, if you lose your hope then what's the point?

I'm not sure where you're living but I do know of some really fantastic neurologists in Canada. One is Edmonton and the other in Calgary. Let me know if you want more info...

Still haven't figured out a cause, nor a "cure". 1 week down and 2 to go on this med mix/dosage. Made the mistake of attempting an overnight caregiver job for an elderly woman. (Easy right?) The M's let me last 2 nights. Couldn't make the last night of my 3 thanks to an M and by that wednesday (i started on a friday) I was at the doc getting shots.

So much for my attempt at "normalacy"...good thing I kinda like being weird...lol Hope things are something resembling well in your worlds!!

"freak" (btw my real name is Sue if you have trouble with freak...lol)