Seeing the Neuro tomorrow

Well I have an appointment with the doctor tomorrow. My current "preventatives" do absolutely nothing. I'm losing hope on this. I've tried so many and they seem to have no impact. Everything is pressure driven - high being better but just that I've got low grade M instead of major misery.

My supportive meds are doing nothing. Gabapentin can help take the edge off, promethazine rarely works, naproxen is a joke and Imitrex gives me 3 hours of relief.

Any suggestions? I want to go in with some sort of idea on how to manage things. I'm also terrified that we've run out of things to try and that I'm just going to have to "live with it".

Does your Dr. give pain meds? I have different levels of meds. Dpends on how bad and what type of pain I have. I take Inderal and Welbutin as preventatives. As abortives I have: Amerge, Phrenilin, Percocet, Phenergan, and for emergencies Demoral. Hope you can get something new that works.
Hugs,
Cindy

Heeler, I had daily HA or M 4-5 a week for six years. Tried all the preventives no relief, used 100 mg sumatriptan 5 times week.

Six months ago I started script Clonodine 3 times day. It stopped HA right away and only a few M in 6 months. I think I feel as normal as I used to. { dont really remember.} Clonodine has alot of uses it has lowered my BP to 119/ 74. I get tired. I would take it 4-ev-er.
It does not cost alot of money.Sometimes I start to get a HA I take another dose it works right away.

I almost had stopped trying and saw this Dr. as a fill in for my new Dr. I really hope there is something for you soon. I will think of you tomorrow.

I'm in the same boat you are.

Tried all the preventatives available and nothing really works for me.

I just get by on the lowest dose of pain meds I can.

It works much better for me to keep a steady level in my system then to wait for the pain to start and just be continuously chasing the headache.

Sounds like pain meds might be the logical next step.

I know it is difficult to suggest that to your doctor sometimes depending on his or her feelings on pain meds.

Maybe someone else could give you some pointers on how to do that.

I am lucky in that my doctor believes strongly in pain prevention and meds so I never had to worry about that.

Anyway, good luck, I will be praying that you get something that will relieve your pain.

Cindy

HL, I was on gabapentin (Nuerontin is the brand name, right?) forever, and it didn't help me very much. It did in the beginning, but after a while, didn't. I have a boatload of gapapentin left over from when I used mail order, and then stopped taking it, but had filled the script for like 6 months. I suppose I need to take it in to the pharmacy to destroy, just can't bring myself to throw out medication I paid good money for LOL

I get chronic daily headaches, and migraines about 4-5 times a week. Severe migraines maybe twice a week (used to be worse but topomax helps me with that). Nothing helps the chronic daily headaches as far as preventatives go, nothing at all.

Pain abortives are about the same for me as for you. Tramadol is hit and miss, naproxen is a joke, ibuprofen takes the edge off a daily headache, but doesn't help the migraine, unless I take it with imitrex (100mg) and imitrex lasts for about 3-4 hours - enough for me to get stuff done, keep functioning, etc. but not enough to totally kill the migraine, and it comes back eventually.

When I have it, I use stadol as a rescue med when the migraine is really bad - like, imitrex can't touch it bad. My dr. isn't generous on the stadol refills though, so I have to be sure the migraine is bad - which means sometimes it's really, really bad before I break down and use the stadol.
Demerol doesn't work for me, unfortunately. Neither does vicoden.

Hot weather and windy weather are my worst enemies. Rain isn't too bad, but it isn't too good, either.

It sounds like our conditions are very similar. I am very interested in what your dr. tells you, tries you on next, etc. Good luck with the appt.!

AB,

This is why I love this forum. Someone else who gets it. I had my appointment this morning. I know he's grasping at straws now. The meds he can use won't work and those that might have such nasty side-effects that I haven't tolerated them well. So we are going back to a mix that we haven't yet tried. I have to discontinue the atenolol for a week before starting but I stay on the citalopram (Celexa) and we are going to add topamax. Starting with 15mg for 2 weeks, up to 30 - if some benefit, stop otherwise after 2 weeks go to 45mg. Not wanting to not repeat what happened at 50mg a while ago.

He's wanting me to see the pain psychologist just because there's a chance that some of the techniques that they employ may be able to have the nastier meds work at lower doses. I'm not terribly optimistic. I saw him once and the cd he gave me - what a crock! Perhaps if I wasn't in pain all the time, but being as things are - I'll do it but I think it's a bit of a joke.

As for the abortives/supportive meds. The imitrex he told me to take with the naproxen and that should help knock it out a bit longer. Will try that and hope for the best. Changed the promethazine (phenergan) to compazine - I've had compazine before and know that it works. I also can up the neurontin to 600mg if I need to - I use this just to take the edge off.

I have a feeling he's running into a brick wall. He did say that the chronic daily headaches (which is what I'm assuming my diagnosis is now) are the hardest to treat. We seem to be in a class where we react badly to medications - those that work we don't tolerate and those that we can tolerate don't work. Sigh.

I just hope that this works or that he has another brain storm. Will keep you posted.

Definitely keep me posted. I rarely meet anyone who gets chronic daily headaches like I do. No one believes me when I say, "yes, I do get headaches every day. I can't remember a day I didn't have a headache." and my daily headaches aren't like other people's - what I call a headache, other people would probably cry about! LOL But I'm used to them, you know? I just pray every day they don't turn into migraines because half the time they do. Or worse, I start the day without a headache and think, "how nice, my head feels good today" only to get a migraine later instead of the usual headache.

HL, feel free to PM me if you want to compare notes on medications I find it very interesting you use gabentin as a painkiller - I used it as a preventative.

I also find it interesting that your dr. doesn't prescribe you any kind of a rescue medication. I take stadol, as I mentioned; I know a couple other people here do too; someone here mentioned they take demerol; I know someone else here takes fioricet; etc. etc. Out of curiosity, have you tried any (or all, LOL) of these and found they didn't work? Or other rescues?

Anyway, I have found that, most definitely, imitrex works better when I take another painkiller with it at the same time - ibuprofen or naproxen (ibuprofen works best for me) or tramadol. It really gives the imitrex a boost in effectiveness. I told my nuero that and he said he'd heard that from other patients, and apparantly that's what led to the development of treximet. However, he gave me some samples of treximet, and while treximet worked ok for me, taking imitrex with ibuprofen works better. I think treximet has naproxen though, not ibuprofen, but I'm not sure.

Well, whichever, I hope things work out for you with this new regimen, and again, feel free to PM me if you want to talk about it more.

Becky, I don't even know what to say other than "Hang In There!"

Cheryl

Mine isnt headaches, but daily head pain. I guess it amounts to the same thing.
I dont have anything for them, just Triptans for the migraines.
I feel for you both.

Lets hope Becky has some good news.
AB how is the job situation?
Any news?

AB,

Well I totally get it but mine are full blown M everyday. Some days are just more intense than others - depends on pressure. Low pressure = bad day. Even the "good" days - still light and sound sensitive it just isn't as severe and the pain isn't as bad. I do think if someone else had to walk in my shoes they'd probably be curled in the fetal position sobbing. My worst days almost do that to me and the constant pain gets old but you learn to live with it. When I meet someone and they learn what I go through it's a level of disbelief but the longer they are around me they realize I'm not lying.

Rescue meds - I haven't been given any but I think my neuro assumes I'd head to the ER if it's that bad. I'm not sure how much he believes in pain meds. I used to take Fioricet but it does very little (I get the same amount of relief from my abortives) and my neuro really doesn't want me using it. So it sits on my shelf and collects dust. The neurontin/gabapentin he told me to use but not to everyday if I could. It doesn't eliminate the pain, just dials it down a couple of notches.

I am going to start mixing the meds I take - see if it helps. I know ibuprofen is a lost cause on me - I have to take large doses to even get minimal relief. Let me put it this way, menstrual cramps usually require 2 vicodin. I'd have to take at least 800mg of ibuprofen and possibly re-dose as that often doesn't cut it.

Just glad there is someone else that gets it. But sorry you have it too.

HL, I get it, sadly.
800mg of ibu is usual for me - the dr. used to prescribe higher mg's for me instead of me just buying it OTC. I just didn't have the new nuero write the scrip anymore, too much hassle. I take 4 to 6 ibu at a time now; the lowest is 3 if the headache is "mild".
Cramps are the only thing vicoden does work on for me - it doesn't touch my headaches. 1 vicoden will dull the cramps, not get rid of them. Never taken 2. Hmmm.
Too bad the dr. doesn't believe in rescue meds - stadol is a good rescue med for me. It does work when nothing else will. I'd say it can knock out 4 of 5 migraines for me - there is always the 1 migraine that nothing will help. Going to the ER is not an option for me, I don't have health insurance and can't afford to. Cost is often the reason I don't fill my prescriptions, either.
You could try stadol as a rescue if the dr. will write it - it's a nasal spray. I think it is very strong so I dilute it - a nuero told me to do that. I can tolerate it full strength but don't like to, so even though i've been on it for a really long time, I still dilute it. My body tolerates it better and it still works for me (although I have to use more than one spray of it when diluted).

Just a thought

I always try to take the lowest dose of anything. And if things continue to be bad, I'll ask about stadol. I do want to see what happens following allergy season - see if it makes any difference. I don't have allergies but there's been a lot of pollen floating this spring.

I also do have the luxury of having insurance and good insurance so the medications aren't an issue for me. And can take stuff that others can't due to finances. I do try to not use meds if I can help it. I guess I've been scared into MOH but if it's just enough that it a distraction I break down and bring out the meds.

And the 2 vicodin - I do at bedtime so I can sleep. I can suck it up during the day, but when I'm trying to relax and sleep I have to knock the buggers out.

HL, I hear you on not wanting to take too many meds, that's why I dilute the stadol. I've heard from various people that they do, too, and from others that they don't. Its an interesting thing. I think in diluting the spray, I can regulate the dosage to be lower than it would be normally. A normal dose is one spray in one nostril - diluted it's of course, half that. I like having that control - I can take half a dose, and if I need to, take a full dose by using 2 sprays. Or take a dose and a half if it's a stronger migraine than usual, but I don't want to double up the dosage (stadol can make you pretty loopy if you aren't used to it). I've been in on it for a long time, so the nuero has written my dosage at 2 sprays - 1 in each nostril. I started out at 1 spray, though.

Its a good rescue med, but some dr's don't like to prescribe it, and alot of pharmacies don't like to stock it. I have gotten a lot of flack over the years from pharmacists.

You're lucky about the health insurance - but it's a good thing. I used to have excellent health insurance that enabled me to try alot of different treatments, so I know what you mean. Someday soon hopefully I'll get that good coverage back again!

One note on MOH: my first nuero prescribed stadol to knock out rebound headaches. He was concerned by the pattern of my migraines that they could be rebound headaches (from imitrex, not OTC meds) and that's why he prescribed stadol. Stadol apparently is very good at killing rebound. I know it's always worked for me, but I haven't gotten rebound headaches in many years.

Sorry, if I repeat anything that was already said in this thread, as I have no time to read other answers, but I am also seeing my neuro tomorrow (still need to get some of my records together, to show him), but I am also having occipal steroid/lidocaine injection done later in the same hospital - I posted about here - so I just wonder if you have ever had it done and if it helped.
It is my second one, and I had good relief, but it is not a gauranteed result each time .

Good luck with your apt, and let us know how you got on
Senna

AB,

Good to know. Perhaps he won't be terribly resistant to it if things don't improve and I end up taking more Imitrex. He said something about having rebounds if you take more than 4 in a month. I think it's something he's noticed in his years of practice. You could take 4 in one week and not have a problem but going over 4 in a month does something weird.

Hoping a job comes your way soon.

Senna,

Never had injections but I don't know that it would be beneficial for me. Hope your appointment goes well.

HL, that's very interesting - I've never heard that before, about taking more than 4 imitrex in a month. I think there are quite alot of people here that do take more than 4 a month, myself included. My nuero knows this though, he's never said anything about it. If I take more than 9 a month (9 being what's in a regular scrip) he does, though. I'll keep that in mind.

Senna, good luck with your appt. I have to comment though, on common courtesy. If someone says they're too busy to read my posts, then I'm probably too busy to read theirs as well.

He said something about having rebounds if you take more than 4 in a month. I think it's something he's noticed in his years of practice. You could take 4 in one week and not have a problem but going over 4 in a month does something weird.

My neuro gives me 12 a month and has no problem with me taking them all. (I dont)
This is backed up by the MAA in UK.
They dont get concerned until you hit 15 a month.
Don't think one heavy month would count.

I have never heard anyone say more than 4 causes rebound...
So 4 in a week is ok, but not 4 in a month?
I dont get that one sorry.

Maybe 4 bad spells in a month? I don't know, it's very interesting!
I think I've hit 15 in a month before, but it's been a long time. I've gone through 2 scrips in a month, and a scrip for me is 9 pills, so 18 total.
I'm right at or just under 9 a month now, and happy with that.

AuntieBubbs wrote:Maybe 4 bad spells in a month? I don't know, it's very interesting!
I think I've hit 15 in a month before, but it's been a long time. I've gone through 2 scrips in a month, and a scrip for me is 9 pills, so 18 total.
I'm right at or just under 9 a month now, and happy with that.

I am around the 9 too AB and have stopped worrying about it.
As the GP said today....do they help? Yes they do, and still well under the 12 the neuro happily gave me.

Well then perhaps it's just my brain damaged neuro... I do seriously wonder about him sometimes (like how he manages to tie his shoes without hurting himself). My script is for 8 a month and I don't usually use them all - when they don't really work I use them for only when I have to function or I'm going to go mad from the M driving me crazy. He made it sound like he really doesn't want me using more than 4 in a month but that things happen.

Guess I'll just ignore him but if I do reach the point where I'm using 8, might be a good reason to discuss the stadol.

hi, heelerlady

just me your "neighbor" saying hi. i wonder if your neuro, was once my neuro. also i would be glad to pm you about some of your meds, that we have in common, i do not want to mention drs. names or med. faciilities unless we pm,

some meds are hard to get in this area depending on your health care provider,

have a bad headache today. took 2 maxalt yesterday. did not feel human till 6:00 pm. too bad i had my physical and was weepy and acting so stupid. migraine brain!

i just started reading two books, one by teri robert "living well with migraine disease and headaches" and dr. david buchholz "heal your headaches"

although i have been sick for 19 yrs. , i am trying to re-educate myself.

until AB mentioned about diluting stadol i never heard of that before.

anyways these books have a lot of info., on the very stuff we talk about here. i am finding them useful.

hope you had fun that weekend in ?lacrosse?

rose

Hi Rose,

I did have a good time in LaCrosse. Always fun and never a dull moment.

I'll send you a pm on the doctor info.

Becky

Becky, I just got a call from Madison. They had a cancellation for Dr. S, and we are going on Monday (as opposed to waiting until July 20 to see her).

Cheryl

Great news Cheryl! Glad you got in much sooner than July.

Becky

HL, 'tis true, some nueros are cracked

But the variation in number could actually be a variation in the nueros' preferred triptan to prescribe. I noticed that when switching nuerologists a while back. My 1st neuro thought more than 9 migraines in a month was excessive - but what a coincidence, imitrex comes in packages of 9 and imitrex was what he tried first with me. He tried all the others but we always came back to imitrex. Both the 50mg and the 100mg came 9 to a package, generic and brand. (I haven't tried generic 50mg, though, to be honest, just 100). I kind of got the impression that imitrex was his triptan of choice, though, from how he talked, so that one would be what he was most familiar with.

The only other triptans I stick with long enough to remember how they're packaged are relpax - my package had 6 in it, but other mg's could have more or less - and maxalt, and I think maxalt had 6? To be honest, I tried maxalt so long ago I don't recall, but when I was prescribed maxalt, it came individually wrapped in little foil-like envelopes, and those came 6 in a little box. Very neat It might still be packaged thus.

Wouldn't it be curious if the nuerologists' opinions about what is excessive as far as number of migraines in a month are subliminally formed by the packaging of the medications they prescribe the most of? Specifically the triptans they prefer to prescribe? Like, my dr. prescribes imitrex more often than any other, so he thinks anything more than 9 is too many? And someone who's dr. prescribes relpax more often than any other might think that more than 6 is too many? Not that they do it on purpose, but that they do it subconsciously? That's kind of wild.

As an aside, that was my experience with my 1st nuero. I was his patient for almost 10 years. I didn't stay with the 2nd dr. long enough, and I'm on the 3rd dr. now. He's more flexible; I asked him to write a month's scrip as 2 boxes of imitrex - 18 pills - and he did. But it's still an interesting theory.