re: preventatives...how many trials is a lot??

In the past I have had 2 good length trial periods with 2 preventatives (1 at a time) 3 aborted trial periods with 3 preventatives (1 at a time) aborted due to bad side effects. 1 that I take now but only to sleep (does nothing for the pain and the dr. understands this.) Is this a lot? My dr. feels it is. My specialist from the past also feels this is a lot. Is it? I get the feeling many here have tried many more. Please get back.

Oh my, I have to think on that one...it's been a lot of years. I'll just list them

Elavil
Depakote
Topamax
Keppra
Celexa
Inderal
Botox
Butterbur
Riboflavin
Namenda

I am currently trying Doxepin. But primarily I rely on opioids as triptans do not work for me. I refused to try Zonegran as I had so many side effects from Topamax. At this point I'm not willing to but up with the side effects of many of the preventatives and am focusing more on pain management.

That's a good question. How many is too many? It should depend on the individual. I think it's worth it to try to find something that could work - I don't think it's an option to just give up unless there is literally nothing else to try.

I've lost count of what I've tried.

Nuerontin
Inderal
Depakote
a calcium channel blocker who's name I can't recall
cymbalta
topomax
an ergot that I can't recall either
There's been some others too far back in the past for me to remember.

Still on the topomax.

In a ten year time frame: Elavil, Calan, Nortriptyline, Lo-Ovral, Inderal, Trazadone, Celexa, Prozac, Depakote, Micronor, Indocin, Vivactil, Topamax, Decadron, Skelaxin, Baclofen, Celebrex, Vioxx, Bextra, Toprol XL, Tigan, Zofran, Phenergan, Vistaril, Compazine, Norvasc, Lexapro, Buspar, Zoloft, Neurontin, Robaxin, Papaverine, Wellbutrin, Effexor, Lioresal, Lamictal, Keppra, Botox, Trilafon, Seroquel, Zanaflex, Famotidine, Dicyclomine, Prilosec, Flexeril, Diamox, Lasix, Spironolactone, Prednisone, Xanax, Cymbalta, Clonazepam, Clonodine, Lyrica, Soma, Dioxepin. Some two, three, and four times. Meds for both HA and nausea prevention.

And twenty-six abortive meds.

I can't even believe it, and I lived it with her.

Cheryl

My list on my computer somewhere has about 30+ meds, plus about the same number of treatments/tests/supplements/etc. That was the point the doctors said I'd tried "everything" for my New Daily Persistent Headache, and we should move to daily opiates. Some classes of meds for me are completely out due to extreme side effects. There are still some meds I'd like to try though...really off the wall ones though, such as treating for non-existent Lyme disease (Hey, some people get help from the meds!). There is still hope you'll find something to help. If I can tolerate a med but it didn't help, I'll ask to try something in the same class to see if I can both tolerate it and find relief from it (never happened for me though, but then again I don't have migraine as a primary diagnosis). Best wishes.

Lets see....preventatives = amytriptyline, nortriptyline, celexa, topamax, depakote, and atenolol. Some individually, some in conjunction with another (this has all been since October 2009). Abortives = maxalt, fioricet, imitrex, naproxen, promethazine, and gabapentin.

I'm currently on a mix of celexa and atenolol to see if it works. On day 5 and no relief thus far, but will give it a couple of weeks as there don't seem to be any nasty side effects (have had my share of those).

I've got a 3-page spreadsheet listing the preventative and abortive meds I've tried over the past 15 years or so. Almost all have had at least 8-12 week trials, unless I experienced too severe a reaction that I couldn't make it that long.

Nortriptyline was the only med that worked somewhat for a couple of years, but since it quit working, the migraines have progressively worsened dramatically.

Frankly, I'm tired of titrating on/off preventative meds. Between the fluctuating levels of pain, side-effects and emotional turmoil, I'm not sure how much more I can take.

Currently, the best abortive I have is DHE injections, but occasionally even that doesn't help. Nothing takes the pain away completely.

Becky

You sound so distressed yet you manage to put a smile/flower at the end of your reply. You deserve a lot of credit.

gailgigi - You didn't say anything about abortives. Do you have any of these that work? I gave up on preventatives, but I have abortives that work. In my case, I didn't think the side effects of preventatives (known and unknown) were worth dealing with. I just deal with the migraine as they come which is just as often if I do take preventatives or don't take them. If you don't have effective abortives, I don't think you have tried too many preventatives. In fact, until you find something that helps, I wouldn't give up.

Your post really got me thinking Gailgigi. It's been a long time since I thought about all the things I've tried and how many of them worked. It's quite disheartening and I don't want to freak you out by taking away any hope you have of finding a preventative that works. Because many people DO find something that helps a lot, so don't give up hope.

*=worked a little bit
**= worked pretty well
***= worked well

In no order!

Preventatives
pizotifen, amitriptyline, propranolol * (but made my hair fall out), gabapentin *** (for a while), sodium valproate (like depakote) *** (for a while), topiramate, lamotrigine, methysergide *, flunarizine ** (for a while), cyptoheptadine, fluoxetine, citalopram, paroxetine, mirtazapine **, venlafaxine, pregabalin, carbamazepine, lisinopril, ramipril,
(all taken for at least 12 weeks and at good doses, except lisinopril and ramipril due to side effects. Some retried a few times, often in different combinations)

Abortives
All seven triptans in pretty much all forms available (melts, injection, tablets etc), ergotamine, DHE intranasal, tolfenamic acid, midrid**, indomethacin (oral and suppositories), diclofenac, aspirin, ibuprofen, paracetamol/acetominophen, codeine **, tiger balm, smelling salts (!)

For nausea/vomiting
metoclopramide, domperidone, prochlorperazine buccal *** (for a while), ondansetron melts ***

Herbal/supplements
Butterbur, feverfew, ginger, cayenne, B12, B2, B6, mixed B's, magnesium, high dose vitamin C (did give me more energy), vitamin D, multivitamins, folic acid, omega 3 supplements ***, chia seeds * (now take omega supplements instead), melatonin *, CoQ 10 (high and low doses).
(various doses and combinations used for at least 12 weeks)

Hospital stuff to try and break the cycle
IV steroids, oral prednisolone, IV DHE, IV lidocaine, occipital nerve blocks, supra orbital nerve blocks *(for 3 days)

Alternative medicine
Accupuncture, osteopathy, cranial osteopathy, chiropractic, homeopathic remedies x about 10, Bach flower remedies, Alexander technique *, QiGong (Chi gung) and meditation' ***

Random stuff
Heat ***, ice, magnetic pillows/bracelets, TSE, TENS, yoga, pilates, lots of exercise (made me feel worse!), food/drink elimination diets (I added it up to over 4 years of elimiating something or other, or pretty much everything, to no avail), blood tests for food intolerances, massage *, low GI diet *, dental splint thing, tinted spectacles (after detailed analysis for type of tint), aromatherapy, PFO closure

I'm pretty sure I've missed some stuff out. This is all over the last 10 years or so.

Things I may try in the future
Zonisamide, Leveteracitam (Keppra), nortriptyline plus atenolol, verapamil; was going to have an occipital nerve stimulator (ONS) implanted but have decided not to for various reasons.

So after all that I am just taking omega-3 supplements, a prenatal multivitamin that also contains ginger, doing Qigong, trying to eat a low GI diet, getting my husband to give me back rubs and using heat at the moment. Plus I've given up caffeine and alcohol due to pregnancy and also haven't taken any ondansetron or codeine during this time, but I would do normally.

Keep trying things but don't place too much faith in a 'cure'. You might be one of the lucky ones, and I hope you are, but you also need to work on acceptance and living with migraine. Remember that the medical definition of a successful preventative treatment is a 50% reduction in frequency OR severity - many people expect much more and end up disapointed.

Take care

Amy

thankyou all for this information. it is enlightening and disheartening all at the same time. I am awaiting an appointment date at a pain clinic. Not a headache clinic, a pain clinic. I'll see what happens. the waiting period for an appointment will be awhile though.