More medication hatred

Ok I am officially done playing the little game with doctors of "just try this one and see if it helps".  In response to my email the neuro wanted me to try Diamox.  Now I always wondered if I might have pseudotumor cerebri, which is what the Diamox treats.  But when I asked several doctors they said by now I would probably have been about blind from the pressure over that much time, but nobody has ever done a lumbar puncture, not that I want one though.  Oh well I said I would try anything.  The first day I took it I vomited all day long.  This was also at the time my grandfather passed away.  I was at the funeral home with the family making funeral arrangements and had to keep going back and forth to the restroom and vomiting.  That was just great.  Then I called my GI doctor to ask for nausea meds.  So at least the nausea meds helped with the nausea and vomiting.  Now I get more lovely side effects - tingling like when your hand or foot falls asleep (like with Topamax), drowsiness all day long (nodding off constantly at my desk), fluid loss from urinating constantly so that I need to take potassium, and carbonated drinks taste terrible.  Well the last one I know isn't so bad and might actually help as far as the weight loss attempts, but I am just listing them all. He wants me to try this delightful medication for two weeks.  If it does not magically cure the hemicrania continua he says he will refer me to either Mayo Clinic or Cleveland Clinic for occipital nerve stimulator implant surgery.  I am leaning more towards Cleveland Clinic.  It is at least a little closer to me (still a 12-hour drive though).  I have to drive, no way we can afford to fly out with our whole family, hotel, rental car, etc.  So hopefully soon I will have that referral.  Please everyone cross your fingers for me! 

Did I already say I have the best husband in the world?

My husband found me an ice pack with a velcro strap, yay!!!  That might not be so exciting to most folks but for me I could almost cry tears of joy.  Now I can keep my ice pack on my head and have my hands free to type for work (or blogging of course!).  It even stays cold for 8 hours out of the freezer.  My youngest daughter was a little disappointed at first that it was already "invented" in her words because she wanted to grow up and invent an ice pack with a strap for me, but then she was very happy as that meant I can do more things with my ice pack on instead of just lying on the couch. 

I do miss having large holiday get-togethers with family and friends but I just can't handle the noise and stress.  My oldest daughter turned 17 last month and she only asked if I would make her a cake instead of having a big party.  We did not go anywhere Thanksgiving either.  I plan to at least go visit family for Christmas.  Hey maybe we can have some lovely family photos with me wearing my snazzy ice pack! :-)

Still no news from the headache expert folks.  Guess I will be having that anniversary after all.  On the bright side, my pain management doctor has started me on a different long acting medication that seems to take the edge off like the short acting stuff did but without such dramatic highs and lows of pain relief and it lasts around 5 hours or so instead of 1 or 2.  It also does not make me as mean and irritable as the old medication did.  I try not to think about it but I can't help but wonder if anything would actually bring the pain down even half its normal level.  I really don't believe that there is a medication out there that will.  Of course there are plenty of medications that can make me go to sleep so I don't feel it, but I just want to feel better and go on about my day instead of sleep through the day.  Even the strong long acting meds seem to have no effect on the "stabs" that I get on top of the constant headache.  Oh well as I am stab free right now guess I better try to be productive.

Frustration

I am frustrated to tears today!!!  When I saw the doctor in NC he suggested that my doctor prescribe me a new medication that he thought worked better on head pain and had less side effects.  I called my headache specialist's office the Friday of 2 weeks ago and the receptionist said she would pull my chart and ask him. I never got a response so the next Monday I emailed him.  Still with no response by Wednesday I called again.  The receptionist stated that he had been very busy and maybe would get around to reading my email that day or possibly the next.  Still no answer today (1 week later) so I call again.  The doctor is not in the office (of course).  The receptionist pulled my chart and he had written a note on my chart saying that he doesn't know anything about that medicine so he wasn't going to prescribe it, the doctor in NC could prescribe it.  Problem - that doctor did not want to prescribe medications for me since he is 3 states away and thought that my doctor who has been treating me all along should do that!  So I said if he isn't going to do that I need a refill of my normal pain medication.  I am allowed the HUGE dose of 2 tablets a day for 24/7 pain.  The receptionist stated that the last prescription he had written for me in February was for #20, take 2 a day.  I was holding the bottle while talking to her, which states #60.  I explained that #20 would only last 10 days since I am supposed to take 2 a day.  Am I supposed to go to the pharmacy every 10 days???  I called the doctor's office in NC to check on insurance approval and of course had to leave a voice mail.  Maybe I will hear back from them sooner than the other doctor!  I just don't know what to do anymore.  I am in so much constant pain and can hardly do anything anymore.  I just really need some relief.

Things I have tried

Well I have been making a list to bring to my doctor's office with me tomorrow of all the things I have tried for the head pain since 2009.  I was surprised when I got to the end because I had forgotten how many things I had tried.  I am quite sure I left things out though since my memory isn't all it used to be.  Anyway, just thought I would share my list. 

On an exciting note at this appointment I am bringing this list and a referral sheet for a doctor I found in North Carolina that does the occipital nerve stimulator implant!!!!  Hopefully my dr can get me referred and I can get in to see him soon.

The list:

Antibiotics given by Urgent Care doctor when headache first started for "sinus" problems, although no sinus symptoms present

Ice

Heat

Triptans

Excedrin

Advil/Motrin

Aleve

Tylenol

Aspirin

Migranal

Topamax

Steroid Dosepak

Botox injections

Imitrex injection

Chiropractic care

Indomethacin - the only relief but caused GI ulcers, at first diagnosed with Crohn's disease by Gastroenterologist thought to have been triggered by the medication

TMJ dysfunction treatments:  bite split and bite splint adjustments, muscle relaxers, Valium

Radiofrequency thermoneurolysis for temporal tendinitis

Elavil (amitriptyline)

Panlor DC

Lortab and Lorcet

Esgic Plus

Ergonovine - caused severe chest pain, constriction/coronary artery spasm per Cardiologist

Zonegran

Trileptal

Nubain

Occipital nerve blocks

Gone to Eye Doctor yearly to make sure eye strain not a factor

HeadOn OTC topical treatment

GelStat migraine OTC sublingual

MigreLief (magnesium, riboflavin, feverfew)

MigraDefense (riboflavin, magnesium, feverfew, guarana, butterbur, white willow, griffonia, actisorb [black pepper extract, ginger root extract, rosemary leaf extract, turmeric extract and cayenne extract]

January 25, 2012 edit:
Now I have also tried these medications:
Carbamazepine (Tegretol) - did nothing
Nucynta - did nothing at several different strengths
Celebrex - did nothing
Methadone (severe nausea and vomiting and inability to stay awake) but did nothing for the pain
Diamox (side effects of tingling hands and feet, nausea and vomiting, severe drowsiness) two week trial ending today- no effect whatsoever on my pain
Kadian (my present pain management) at least takes the edge off pain so I can get out of bed

I also had a cervical epidural which actually helped symptoms in right hand and arm that I thought were carpal tunnel, but no effect on head pain at all except for reduced pain that lasted 3-4 hours