I am a patient (not a medical professional!) who has been dealing with hemicrania continua since 2009. This causes constant head and facial pain on one side of the head 24/7. I am looking into occipital nerve stimulation as a treatment as I have tried everything else.
Tuesday, June 28, 2011
Addicted to ice packs
Is it a bad thing to be addicted to??? It seems I can only go a couple hours without using one for the past few weeks. I guess I jinxed myself saying I didn't have bad days all of the time. I need an ice pack that stays attached to my head all day long! Can't wait to meet with the new doc and see if he can help.
Thursday, June 23, 2011
Going to NC
I finally have my appointment to see the dr in North Carolina that does the occipital nerve stimulator implant. I am so excited!!! Only now I have to wait a month....
Ironically I am having a bad pain day today :-(
Ironically I am having a bad pain day today :-(
Tuesday, June 14, 2011
Bad days
Yesterday was a bad day for the HC. I spent the day on the couch feeling like I would pass out every time I stood up. Fortunately I do not have that many days like yesterday, but unfortunately I cannot control when they come whether it is inconvenient for other people or not. If I did have days like those all of the time I don't think I would be so tolerant of unsympathetic people. They suck!!!
Thursday, June 9, 2011
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:
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
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
Wednesday, June 1, 2011
Chicken coops are dangerous
Well I finally got an answer to a question I have had for years. I always wondered if I hit my head really hard on something if it would magically cure my head pain. NO!!!!! It does not. I hit my head (on the pain side of course) really, really hard on a beam while tending to chickens in the chicken coop this morning. Trust me I did not see stars. I saw nothing at all for a few seconds! Now the pain is worse so there goes that dream. Oh well, at least now I know!
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