Need help from expert on chronic headaches?
I know this is LONG, but if you know anything about headaches (professionally), espcially MD/experts/specialists PLEASE read.
For the past 10 years, I have been battling progressively worsening migraines/tension headaches. (I can pretty much take care of the tensions with TENS unit, heat and regular massages) but the migraines occur 3-5+ times per week and are debilitating. I have been on 78 different medications- preventatives, abortives, narcotics, psychiatric meds as well pure oxygen), pretty much everything that is traditionally used to treat migraines and then some. I’ve stopped smoking, drinking alcohol, stabilized caffeine at 200mg/day consistently and worked on nutrition/exercise. I am still in pain every day.
I have had MRIs, CT scans, bloodwork inc. TSH, seen 3 different neurologists, a headache specialist, 4 different psychiatrists (the first neuro referred me after nothing he tried worked), an ENT and an eye doctor. Perfect sinuses. 20/20 vision. Nothing is pathologically wrong. I’ve had 2 facet blocks and an occipital nerve block, physical therapy. I DO NOT KNOW WHAT TO DO.
I am 23 years old and no doctor wants to treat chronic intractable migraines in someone that young. I suppose I appear like a drug seeker, but I’m truly not. I’m in nursing school and just want to finish, get my MPH and work in public health. I also have severe social anxiety, severe insomnia and depression (in the past) and have finally found a psychiatrist who has me on the right combination of meds for that (Lexapro, Ativan, Ambien and Seroquel). I cringe at the thought of going to another neurologist since they like to dabble in psych meds (which I understand is necessary), but they usually end up adding something that throws off the combination I’ve finally achieved to control my anxiety and depression. For instance, Keppra made me suicidal and Zonegran made me have multiple panic attacks which my psychiatrist had to intervene and add ridiculously high dosages of even more benzos so I could just go to school and work.
I’m honestly just tired inside and ready to give up. I understand narcotics are not routinely used to treat migraines, but are there special exceptions, because the ONLY medications that work (other than Midrin) are Nubain, Stadol, and hydrocodone. Demerol doesn’t work. Ultram, pentazocine, codeine, Darvocet, oxycodone, none of these work, so as you can see, I’m not looking to get high or I’d be fine with Demerol and Percocets. Truly, the most effective is Nubain. ALL it does is stop the headache. No “high”- I can still function. Sedation isn’t a problem as my body chemistry seems to react opposite to what will usually “knock someone else out” (for example, I am on 6mg Ativan + up to 30mg Tranxene PRN to control anxiety and it doesn’t make me the least bit sleepy). I am fully capable of giving myself IM injections as it only comes parenterally. I know it is not exactly desirible, but my quality life is at ZERO and I would rather give myself frequent injections than live like this. Nubain has a ceiling effect, antagonistic properties, is less habit-forming than the pure mu agonists, will antagonize other narcotics, and is not scheduled by the DEA (no scrutiny). What are the chances of having this prescribed for home use. I am already forced to go sit in waiting rooms IN AGONIZING pain 2-4 times a week for something I can easily do myself.
Meds I’ve been on for headaches or as an off-shoot psychiatrist-prescribed related TO the primary problem of headaches (and it’s a long list): virtually every OTC, Zoloft, Elavil, Imitrex, Maxalt, Zomig, Amerge, Frova, Relpax, Axert, Pamelor, Neurontin, Migranal, Melatonin, Lithium, Keppra, Inderal, Indocin, Cataflam with Reglan, Namenda, Esgic, Lithium, Pristiq, Mobic, Zonegran, Toradol, Paxil, Wellbutrin, Abilify, Trazodone, Buspar, Geodon, Zyprexa, Topamax, Depakote, Verapamil, PURE O2 @12 L, Esgic, Toradol, Ultram, Magnesium, Celebrex, Vioxx, dicflocenac, Lidocaine (intranasally), Vistaril, Haldol, Solu-medrol, Lexapro, Midrin, Naprosyn, Seroquel, Ativan, Restoril, Ambien, Rozerem, Lunesta, Sonata, Valium, Klonopin, Tranxene + NARCOTICS (as “rescue meds”) – Nubain, Stadol NS, Pentazocine (Talacen), Lortab, Intravenous Demerol, Darvocet, Percocet, and Tylenol #3.
I realize I’ve been medicated to the point that I don’t really know what is doing what. I know I need the Lexapro/Ativan. I’m trying to get back to natural sleep, cutting back the dosage of sleep Ambien/Seroquel for sleep (ironically neither works alone, but they work great together).
So, just to be frank, I really don’t want medications suggested (I’d be open to it, of course, but very wary). I know what works and what doesn’t. And if it’s something I haven’t tried and is related, that is if it is anticonvulsant, antidepressant, etc. I’m just not interested. I think I’ve been a good sport in giving those a chance, and I’m done playing the guinea pig. I know it’s trial-and-error but it
