Topamax

[Captain Deb]

My migraines usually start with 2 days of excrutiating neck and shoulder pain, what's called a prodrome. I can almost say,"I'm going to have a migraine tomorrow," by the way my neck is hurting one day.  Winter is defintely the worst with the barometric changes and stress of being cooped up.  We are looking for a Lab puppy to get me outdoors walking more. I hate walking alone and a puppy needs to be walked twice a day according to Cesar, the Dog Whisperer. I truely believe that pets lower one's stress level as does excercise.  My Lab Ursa was a great predictor of migraines, too. She would velcro herself to me when I was hurting and lay in bed with me the whole time.  Just stroking her soft warm fur helped calm me down. Labrador Retriever Therapy, Topamax and Imitrex are my lifesavers! As are you guys!

Capt Deb

[Static]

I have neck and shoulder/arm pain ever since I fell on Saturday night.  I was bending over to say something to the dogs (yeah, I'm crackers, that's already been determined) and I kept going over and I actually fell on my head and not realizing it was even happening, I didn't put my hands out to catch myself so that's why my head, neck, shoulder and arm on the right is screwed up, I fell on it!  I've had a headache ever since and my left arm muscle is really sore too because I probably tightened/tensed up all my muscles.  It seems to get worse every day and if my right arm is just hanging down when I walk, it gets numb like I pinched a nerve or something.  So, my balance has been getting bad for whatever reason instead of better. 
You should get a puppy Deb.  Look at my cute new girl, Roxy.  I put her pic up for awhile so everyone could see her cuteness.  I'll put one up of her and Zoey again soon!  Even when I feel like poo, my girls make me feel better.  Oh and about Cesar, the dog whisperer, I read his new book.  Let's just say I wish I wouldn't spent the $ on just about anything else but that book, it was totally not worth it!  Let me know what kind of dog you get 
~Karen

[Captain Deb]

OK, Folks, Who has read the January ANA newsletter? Didja see my letter about Topamax in the mailbag section? Yeah, That was ME!!! I sent in a pic of me in my pirate outfit but they musta lost it! Anyway, my Headache Wiz has me maintaining at 100 mg for the duration. I sure am using a lot less Imitrex these days. I haven't had to give myself a shot in 3 weeks and that's a record! My poor ole thighs could use a rest. They were feelin' like pincushions there for a while!

Here's wishing a headache-less day for everyone.

Capt Deb

[lori67]

I was wondering if that was you...... I can't believe they didn't put the pirate picture in there!    Then I would have known for sure it was you!

Good artlcle!  Thank you!

Lori

[Static]

Deb,
I knew that article was written by you    I'm glad you are getting more headache relief!  I'm actually considering coming off the topamax because I'm still getting the headaches and I'm at 300mg daily.  I feel, at this point, that it's just not going to do it for me.  Going to take a different approach with my neuro.  Am annoyed with the headache clinic, long story and really don't want to go into it on the forum.  Will keep you all posted if I ever get around to taking care of things!
~Karen

[lori67]

I'd say it's a bad thing if your headache clinic starts to give you a headache!

Good luck all you headache sufferers.  I hope you all find relief!  I'm lucky enough that tylenol does the trick.  Let's hope it stays that way.
Lori

[Static]

Lori,
I'd say so too!  They actually aren't my headache clinic now and I doubt they ever will be.  I am just plain sick and tired of doctors at this point in my life.  It's supposed to snow tomorrow so the barometer change will probably get to me and I actually have a pretty bad headache right now.  When I just went to let the dogs in, I decided to try a Tylenol because I haven't taken that in awhile and it just might work.  I'll let you know!  Gonna try to get up to Borders for that book by Trixie Koontz today, I need something enjoyable to read and I'm all out of Carl Hiassen books! 
~Karen

[Captain Deb]

Hiassen is the BEST! I laugh out loud in public in the airport when I read him!

  I am really interested in the procedure Janet is considering.  My headaches zero in on that occipital nerve, too. When they are at their worst, it feels like a big drill boring into my skull right where that nerve passes through the muscle in the back of my head. Get out your anatomy book and look it up. My Physical Therapist gave me a lesson on "nerve entrapment." Making more room for that nerve makes alot of sense to me. I sure don't want to have to eat Topamax for the rest of my life with a family history of glaucoma in my background! I've kinda had it with the docs, too. I'm sick of giving them all my money! I struggle and struggle to make these paintings and they end up with every penny of it. Sure wish my disability would come through!

Capt Deb

[Captain Deb]

Hey Gang!
Well, the Social Security Misadministration has granted me disability with partial (very  little) retroactive payments. See my post under AN community.  Topamax is the only preventative med I am on now--weaned off of the Neurontin and the Imipramine.  Of course had 2 weeks of bad headpain getting off the Neurontin and am not sleeping well,  but have increased the Topamax dose to 150 mg.  I see the neurologist next Monday and am thinking about ending my visits to the headache specialty clinic.  I've gone just about as far with them as I think I can go--I hate the trip down there, and I think I'm on the right med for me right now.  The next step is the path Janet has chosen if I cannot manage on the meds.  We'll see if Medicare will pay for Botox! (Er doc, while you got that syringe full..............)

You CAN get disability for these suckers if you are persistent and have a good lawyer and get to the right docs!

Here's to a headache-less day for everyone!

Capt Deb

[Captain Deb]

Just thought I'd update everyone on my Topamax use--I'm up to 150 mgs a day and have been using it for 16 months now and my headaches have changed dramatically.  I'm rarely having what I call "spontaeous migraines",
meaning those wake-up-in-the-morning-or-the-middle-of-the-night-with-it-headaches. Which means I think I have reduced one source of the problem, since I think I have many triggers for this post craniotomy migraine syndrome. I haven't had to give myself a shot of Imitrex in over 2 months now!

Also good news is I have lost 20 pounds and am actually 10 pounds below my pre-surgery weight which doesn't bother me one bit!

I am going to my local pain clinic about every 5 weeks for nerve blocks to my occipital nerve for a bit of occipital neuralgia which is another contibutor to the syndrome.  It's like removing the dominoes one by one from the line so they don't all fall down and cause the brain wreck!

Not to say I'm headache free, but life is so much better now I can hardly believe it!!!!

Hugs to all you headache sufferers and may you all find someting that works for you

Peace,

Capt Deb

[yardtick]

Capt Deb,

Do you also take neurontin?  I'm going to look into that. 

Happy Days,
Anne Marie

[Captain Deb]

Yes I take 6oo mg 2x a day.  I went off of it this summer and my occipital neuralgia flaired up something awful.  I had almost constant pain and bad exertional headaches, but oddly, no bad meltdown brainwreck thanks to the Topamax.  My incision area flaired up bad, too.  I think the Neurontin keeps the damaged nerves in my head from contributing to the syndrome.  I thing the Neurontin-Topamax-nerve block cocktail is what works for my particular brand of syndrome!

Capt Deb

[Larry]

Good news Deb,

You should change your name to Captain Pharmaceutical!!!!!!!

Glad to see that everything is working for you. I can't take Topomax - affescts my eye pressure. Neurontin is helping me but still getting the brainwrecks - learning to cope with them as best as I can.

Laz

[MamaGina]

Hi everyone!  I really love this forum.  I've been suffering with these same symptoms as all of you for the past eight years, and thinking I was crazy.  My husband is unsupportive and uncompassionate on his good days.  I have extreme levels of stress.  I have four children, four pets (2 dogs, 2 cats), a practically full-time job as an RN, and a home.  I am on Topamax 100 mg twice daily for Migraines with Relpax (similar to Imitrex, but oral) as needed.  I was overjoyed to see that other people are taking Topamax for the same reason as I am: post-AN headaches/migraines.  I also learned from this site that other people have trouble word-finding and with concentration and memory.  I'm going to find a better Neurologist and possibly a Headache Specialist.  Being a nurse is a negative, because I do not do a very good job a taking care of myself.  I really need support for living like this, nobody else seems to understand.  I am so tired of the pain and dizziness.   

[ppearl214]

Hi everyone!  I really love this forum.  I've been suffering with these same symptoms as all of you for the past eight years, and thinking I was crazy.  My husband is unsupportive and uncompassionate on his good days.  I have extreme levels of stress.  I have four children, four pets (2 dogs, 2 cats), a practically full-time job as an RN, and a home.  I am on Topamax 100 mg twice daily for Migraines with Relpax (similar to Imitrex, but oral) as needed.  I was overjoyed to see that other people are taking Topamax for the same reason as I am: post-AN headaches/migraines.  I also learned from this site that other people have trouble word-finding and with concentration and memory.  I'm going to find a better Neurologist and possibly a Headache Specialist.  Being a nurse is a negative, because I do not do a very good job a taking care of myself.  I really need support for living like this, nobody else seems to understand.  I am so tired of the pain and dizziness.   

Hey Gina and welcome! Good to have you here! I saw your other post as well and wanted to give you a proper welcome.  What a busy life you lead and no wonder you have headaches! I think I'd have them too based on all you do!  Hoping the info shared here will be helpful and looking forward to your further participation here.

Again, welcome!
Phyl