---Lori-Lynn Munro <llmunro@telusplanet.net>
Edmonton, AB CANADA -
Hi,
Sorry in my last post, my e-mail address is wrong.
It should be: llmunro@telusplanet.net
If that doesn't work: try: llmunro@compuserve.com
Hope to hear from you soon :o)
Cheers!
Lori
---Lori-Lynn Munro <llmunro@telusplanet.net>
Edmotnton, AB CANADA -
Hi, It was really nice stumbling across here and reading stories from people going through the same hell I am right now. Migraines have taken over my life, I had to quit my job as the Operations Manager @ an International Student Exchange Company, and move back from Vancouver to Edmonton to be with my family and under the care of my family doctor.
I have been suffering these frequent debilitating headaches for the last 8 or so months. Before then, I experienced about 1 migraine a month from allergies or when I flew in an airplane. Now I'm getting them almost daily.
Headache Symptoms:
Pain all over the head, throbbing painfully behind one eye (varies from side to side)
nausea and vomitting so bad sometimes I don't make it off the bed in time
no tunnel vision, I do see stars and have a numbing down my left arm, hand and fingers
unable to sleep, the pain is so bad I cannot get comfortable.
Light is unbearable, I lay in a cool dark room with a plastic bag by my side.
The following are the medications I've been on. (Please excuse the spelling errors) :o)
Preventive:
Ellavil (Amitriptyline) - started at 25mg, worked up to 150mg, (over an 8 month period and ceased use after gaining a substantial amount of weight and finding no relief for the headaches
Sebillium - started with one a day then went up to 2. After 3 months of my headaches worsening and a weight gain of 45 pounds, I demanded to be taken off
I can't have Beta-Blockers as I am Asthmatic, my doctors have tried to create the same effect by combining the Ellavil with Isoptin, then Cardisiam, then Tiazac, nothing worked
Now they're trying me on Neurontin, a medication used for Epileptics, it's been known to help migraine sufferers too (fingers crossed).
Pain and Rescue Meds:
Stadol - as I constantly throw up with my migraines and cannot keep even a pill down, stadol has been a blessing. It's a good strong painkiller nasal spray, it takes the edge of my headache and usually relaxes me enough to get some sleep. It's been a blessing, I try not to use it too much as I do not want to build up a tolerance or trigger rebound headaches. So sometimes I suffer without any treatment for pain as I don't want to become immune to the pain meds.
DHE (or Migronal) - Tried Intravenously and by Nasal Spray. Neither work, DHE just upsets my stomach which in turn re-triggers my headache.
Imitrex - I should have known the nasal spray wouldn't work for me, the pill and needle never worked wither. Once again it upsets my stomach which re-triggers the headache.
Voltarin - Muscle Relaxer, couldn't keep down and when I did it upset my stomach and re- triggered the headache
Fiorinal - couldn't keep down and when I did it upset my stomach (the codeine) and re-triggered the headache
Demerol - Once I've given up on finding relief on a migraine, I go to the Emergency room where they treat me with Demerol & Gravol or Morphine & Maxaram. It does not get rid of the headache, only masks the pain for a few hours.
*I have tried Maxaram and Motillium for the nausea, and believe it or not,find that Gravol tops them both!!* When I am too sick to go in the car to the Emergency room and can't get out of my bed (even to throw up, I've gotten well aquatinted with plastic bags) It treat myself with Stadol and Gravol it's like receiving the treatment of Demerol and Gravol from ER, usually gives me enough relief to fall asleep.
One thing I found brings me some relief, is something I purchased from a distributor in Calgary. It is called the "headache band" It is a velcro headband filled with a gel or cream like substance that doesn't freeze, it always stays nice and soft. You put the headband in the freezer then wrap around and fasten it to your head. You can walk around with it on istead of having to lay there holding a solid block of veggies to your head. The headband can be worn for up to 30 minutes at a time and is very comfortable, soft and soothing. I have the distro infrmation if anyone is interested, feel free to write.
Doctors
My Doctors initially thought all the pressure and weather changes that happen in Vancouver were a trigger so I moved back to Edmonton to be with my family. The doctors are now tracing this bad bout of headaches back to a fall I took last May which resulted in a concussion. Next week I'm getting my jaw checked by a dental specialist for symptoms of TMJ.
So Far I've also seen:
Chiropractor - feels the damage from the fall is too high up in my head to work on. Has never seen anyone with headache pain such as this and doesn't feel he can help
Dietician - Reviewed my food diary and said I'm not eating any migraine-trigger foods and to further investigate. She also confirmed all the weight gain is from the medication as I don't even eat enough in a day to fill the Canada Food Guide Standards, and I never keep anything down so I should not be the weight I am.
Neurologist- Feels there is nothing more he can think of to do for me. (That broke my heart, 3 months of weighting to go to this appointment to hear this depressing news) He is arranging to have the bump on the back of my head Ultrasound to see if it's a cyst pressing on a nerve (The CT Scan came out Normal). He's referring me to a colleague of his that specializes in migraines and I'm also being referred to the Migraine Hospital in Calgary (3 hours away) but that could take 3 months to get into.
He mentioned there is a new *miracle* drug coming out in a month that is the same idea as Imitrex but with no side effects, he's putting my name in to participate in a study to test the drug, that way I get early access to it and probably free meds.
I'm also seeing an Endocrinologist to see if these headaches could be hormonal.
Update, as of today April 2nd, 1998. I'm still experiencing a great deal of painful migraines. In the last 17 days, I've had 2 days that weren't too bad. The rest were pure agony. Since being taken off the Ellavil 17 days ago, I cannot sleep. I sleep maybe 2 -4 hours a night, the pain is so bad I cannot get comfortable. The doctor prescribed Ativan for me, but I took it 5 hours ago and I don't feel sleepy, nor any relief from my headache at all. I'm extremely frustrated. I'm sick of being sick. I miss being able to work and leave the house like a human being. Now I'm overweight, in terrible pain, sitting in dark rooms getting no answers from doctors. My Birthday is April 6th and I'm not looking forward to spending another year of my life in such extreme pain. I'm only 25, going on 26 years old.
I as well as the doctors feel we've exhausted all our options, to no avail, if anyone has any suggestions for me, please write and tell me I'm desperate. Oh and, thanx for listening (sorry if this is too long, I tried to make it as short as possible) :o)
Cheers!
Lori
---Lori-Lynn Munro <llmunro@telusplanet.com>
Edmonton, AB CANADA -
Hi, youall I don't know what is going on with this web site or my computor or whatever but my messages that i submitted are there and then there not there;so I kept clicking submit and so if 10 duplicatle messages come on you will know why. I know it says you may have to reload to view this message and i would if I knew how! thanks, janet
---Janet <stella@verdenet.com>
cottonwood, Az. USA -
Hi, where is everyone ?I have not had much response in regards to emailing me and getting correct email address!!Wen i started this everyone emailed me and said oh yes go for it etc. what can I do to help so I answered but I have not had much help!! Youall don't have to go on her show just tell her what is going on. the more letters she gets the better! Thanks Janet
WHOOPS CORRECTION:forgot to say OPRHA SHOW
---Janet <stella@verdenet.com>
cottonwood, Az. USA -
Hi, where is everyone ?I have not had much response in regards to emailing me and getting correct email address!!Wen i started this everyone emailed me and said oh yes go for it etc. what can I do to help so I answered but I have not had much help!! Youall don't have to go on her show just tell her what is going on. the more letters she gets the better! Thanks Janet
WHOOPS CORRECTION:forgot to say OPRHA SHOW
---Janet <stella@verdenet.com>
cottonwood, Az. USA -
Hello my family! I hope everyone is doing better. I thought I would give you all an update, and of course, there is a question hidden in this update. I'll highlight it for you when I get there.
I went for my brain MRI, liver functions testing, blood work, and still have an MRA (this looks at the blood vesseles in the brain (Magnetic Residence Angeoplasty), and the thermography to go. I was put on Depakote, for epilipsy and had major reservations about the drug. It causes severe liver damage if the liver isn't watched closely. So I have monthly liver functions studies to go through for atleast the 1st six months. Some of the other side effects are beginning to get to me. I have been trying to be very optimistic, but it still gets me down at times. I wake up in the night, and I feel like I'm in a space movie. I don't just have double vision, I have bright lights usually in blue or silver, showing about 5 images of everything behind it. Kind of Slow Motion in the movies effect. I walk through door ways (remember it's three a.m. and its way dark outside and in the house), and I hit the door frame. I was hoping to play softball this year, but I'm so off balance, I'm not sure I can. My bones hurt in several joints. Like my elbows, my knees, my hip sockets, my ankles, and I don't know why. I get up from a chair, and fall right back down. I get so light headed, I almost pass out. And, I get so sleepy about 1:00 in the day that I have been having to come home, and barely make that! I have fallen asleep on the phone (real business like, huh???), I have fallen asleep in the drive through window, and I fall alseep at my desk.
****QUESTION****
Has anyone taken Depakote and has this problem?
My headache is very low right now, and I'm grateful for that. But the last three days, I've been having a breakthrough headache, which makes me cry. You all know what it's like to feel at the end of your rope, and this drug is the last for me. I'm risking loosing my hair, tremendous weight gain (not as of yet) and I'm risking liver damage. And when I get that familiar twinge, I just want to scream! "I CANT TAKE IT ANY LONGER!!!" I'm on three different drugs to counter act the Depakote and the side effects from it. I asked my mom the other day, "Is this really living????" Of course to her it is. I have two wonderful boys to help grow. I want to run and play with them, and I try to do it as much as I can. They are my hopes and dreams! The more I can make them laugh in a day, the happier I am.
I don't mean to sound ungratful and I don't want pitty. It is just very hard to be a full time employee, full time mom, and have these darned headaches so much. So, can anyone out there give me some answers? Thanks so much for taking the time to read this! I finally have a home in which I can share my thoughts. Thanks for all the responses I've gotten. Each one means so much to me.
Thanks again!!!
Lisa, Birmingham
---Lisa <Sprkln31@aol.com>
Birmingham, AL USA -
