ANA Discussion Forum

Post-Treatment => Headaches => Topic started by: Captain Deb on July 25, 2007, 02:20:03 pm

Title: Topamax
Post by: Captain Deb on July 25, 2007, 02:20:03 pm: Hi crew!
While at Dr Silberstein's headache workshop at the sympsium in Philly, I asked him point blank which med he'd had the best results with for Post-surgery AN patients and he said Topamax (topiramate). I said I had tried this med several times and could not tolerate the side effects :weepiness, sadness, irritability, etc. He said that I needed to start with a maximum of 15 mg and titrate up very slowly over the course of several months to 150-200 mg. He said he found a lot of people can tolerate the side effects if they increase the dose very very slowly.

I went to see my headache Wizard and told him what Doc S had said and he was really impressed that Silberstein was there beause he's one of the top headache specialists in the whole wide world! ( He kissed Batty on both cheeks and made her all well!)

So he wrote me a script for Topamax 25 mg sprinkles, which I can either put in applesauce, or maybe decorate cupcakes with--and eat 1/2 the dose each day at bedtime. I hope this works!

I travelled all the way to Philly and missed 1/2 the workshops because I was in bed with a doozy of a headache that lasted all Saturday night and into about noon on Sunday--that happens when I have too much fun!

But I got to meet all kinds of great people and see my best AN buddies face to face and hug 'em all!! That was the best.

So any comments anyone has on this med would be appreciated and I'll let you know how things progress.

Be Well and Sail On!!!

Capt Deb 8)
Title: Re: Topamax
Post by: Brendalu on July 25, 2007, 03:17:23 pm: Capt Deb,

I have been on Topamax for seven months and it has helped. I currently take 100, 50 am and 50 pm. I am on my way up to 200. The one side affect I was hoping for I didn't get. (weight loss) I also take lamectal and that curbs the weepies.
I hope it works as well for you as it has for me. I am down to one or two train wrecks a week and that is a far cry from six!
Keep me posted on how it works for you. Remember you have to take it before the headache because it won't get rid of it once it is there.
Hugs,
Brendalu
Title: Re: Topamax
Post by: Static on July 25, 2007, 05:14:35 pm: Hi Deb!
Well, you know that I'm also on Topamax, currently, 150mg, 2x daily, and those headache specialists are the ones who I am trying to go and see without having to put out the $400 for the stupid psychologist exam but that's a whole other post. Anyway, since I've been on the higher dose of Topxamax for about 3 weeks now, the sinus infection is over and I've tried to lower my stress levels, my headaches are much less than they've been in a long time and I don't get a major one every day like I used to. Like Brendalu said, I didn't lose any weight on it either, but just losing the headaches is enough that's for sure! Good luck with your new trial. It may take a while for you until you get to a dose that will really work, but you have to hang in there until it does. Until then, just try and get a good nights sleep and keep the stress down ;)
~Karen
Title: Re: Topamax
Post by: Larry on July 25, 2007, 10:54:49 pm: Hi Deb,

we have discussed this before but thought I'd post. i was taking 25mg of Topomax and it started to make my eeyes watery and I couldn't risk it any further. A possible side effect of this drug is Glaucoma so those on it should make sure you get tested for this regularly. Its a pretty straight forward eye pressure test. Most optomitrists can do it.

everyone is different and I sure do hope it works for you. Looks like its having success with others and THATS FANTASTIC. ;D

Laz
Title: Re: Topamax
Post by: Brendalu on July 26, 2007, 05:16:08 am: Laz,
Thanks for the Glaucoma side effect post. I hadn't been told about that or read about that. I have an eye appointment next week and I usually skip that test because I jump! (I have a "thing" about stuff coming at my eyes) I will have the test this time though. Thanks for letting us no. I wish Topomax had worked for you.

Brendalu
Title: Re: Topamax
Post by: Static on July 26, 2007, 03:14:00 pm: Yeah, that's right. I did forget to mention that my neuro told me that if I noticed any changes at all in vision that I should call my eye doctor immediately and tell him that I'm on topamax and need to be seen ASAP. Thanks for that reminder Laz.
~Karen
Title: Re: Topamax
Post by: Captain Deb on August 04, 2007, 10:43:53 am: So was on the Topamax sprinkles 25 mg and doing 1/2 of that at bed time daily for 8 days--titrated up to 25 mg the evening before last and WHAM got hit by a wave of the wheepies yesterday morning--crying jag that lasted into the early afternoon until I decided to Xanax myself. Yikes. Will I ever tolerate this drug? The best headache specialist in the world told me I should give it a shot so.....

I'm spending another week at 12.5 mg and. Will figure out a way to titrate up to 25 mg a little slower. Need to use my high school math, I guess--If you mix 25 into 1/2 cup of applescauce and eat 1/2 of that, how much do you have to eat to get 19 mg? I'll work it out--damn non-metric system!
Anyone else get such severe psycho-side effects?

I think my titration needs to be done alone at a luxury hotel in the Caribbean.(Not on a boat as I'l be yelling at the crew!)

Capt Deb 8)
Title: Re: Topamax
Post by: Omaschwannoma on August 04, 2007, 11:47:57 am: This is probably going to be a wasted question but here goes.....Deb, have you tried espresso in the morning for headaches? You know the extra boost of caffeine? Maybe combo of your sprinkles + caffeine jolt might do something?
Title: Re: Topamax
Post by: Larry on August 06, 2007, 09:03:48 pm: Arushi,

Caffeine is actually a known stimulant that creates headaches rather than the other way. Sorry, but been down that road. I now have 1 coffee max per day, too many affect mee adversely. It maybe me, be interested in other views.

laz
Title: Re: Topamax
Post by: Captain Deb on August 07, 2007, 02:44:53 pm: Ditto here on the caffeine--my Headache Wizard has me totally de-caffed, much to my chagrin. It was my drug of choice in my previous life. That and Chocolate. Needless to say I'm not quite the morning person I once was.

Capt Deb 8)

PS Brendalu--is Lamectal generic? I could look it up but, since I've no caffeine, I'm lazy! Also--Nice pic!
Title: Re: Topamax
Post by: Captain Deb on August 08, 2007, 10:39:44 am: OK I looked up Lamectil and found it to be used to treat bipolar disorder and seizures. I've finally driven Dr Love outta the house, at least for the daytime--he's rebuilding a deck on one of our rentals. The Weepies are getting better--taking 1/2 of a Xanax when I feel them coming on-- anymore than that just puts me to sleep. I'm up to tolerating 25mg a nigh fairly well. Yay! Had a brainwreck Sat night that lasted until Monday night. Not the shaking and crying kind, just the really agggrrrrrravating beasty. Will keep you posted.
Be well and sail on!

Capt Deb
Title: Re: Topamax
Post by: Brendalu on August 08, 2007, 11:23:02 am: Lamectal is also used for mood swings and depression. It will soon be approved for use for depression by the FDA. I am now up to 300mg and 200 mg Topomax. I still have migraines but not as often and not as severe. Must be the Lamectal is so I don't get the weepies!!!
Brendalu
Title: Re: Topamax
Post by: Captain Deb on August 10, 2007, 10:02:43 am: Bipolar! Hell right now I'm Tripolar! Quadripolar!

Actually............25mgs and holding......Dr Love back in the house most of the day yesterday without a scolding or guilt-trip laid on him once! Backing off the Neurontin a smidge so I have a little more energy. As our Pearly Girly says, "day by day...inch by inch...."

Hugs,

Capt Deb 8)
Title: Re: Topamax
Post by: Brendalu on August 10, 2007, 04:37:20 pm: Got a really good one one now.....I was weeding my flower beds.........sitting down..flat on my bottom sooooooooooo I wouldn't have far to fall...not that I would anyway I am vertically challenged. Next day I couldn't move or breathe. Went to see my wonderful PCP. She said I tore muscles in the same side as my fractured hip I didn't know I had until my bone density test! So now I am taking Darvocet (makes ya drowsey) Flexeril (makes ya drowsey), Topomax makes ya drowsey and I have narpolepsy to boot. I am investing in tooth picks. No weepies though!!!!
Brendalu
Title: Re: Topamax
Post by: Captain Deb on August 10, 2007, 05:54:34 pm: I know what ya mean--I used to love to garden--now I either trip or give myself a headache. I'm hiring some pixies next year. Last year we got lazy and just threw our compst in one of our veggie beds. Now we have The Little Shop of Horrors Cucumber/Squash Garden that's Eating the Entire Driveway and Yard. Anyone want some Veggies?

Hope you feel better ya little red-headed pixie you!

Capt Deb 8)
Title: Re: Topamax
Post by: Brendalu on August 16, 2007, 07:13:17 am: Good News on the Topomax front.....I am now up to 200mg a day and the weight is starting slide off! I might be down to my normal size in a few months. That alone has got to make me feel better!!!
My yard guy doesn't speak much English (although he is learning) tells me he no weed he use spray! I tell him he kill my plants I kill him head! He just mows, edges and trims every other week to give my hubby a break on his six day hundred hour week. I figure with the heat we have been having he deserves a little break............maybe.
No more Lamictal......it didn't work..............now we are tryin Cymbalta.....we shall see. Maybe I'll just give it to the hubby and I will feel better.
Brendalu
Title: Re: Topamax
Post by: Captain Deb on August 18, 2007, 09:09:45 am: I think the depression and mood swings we get at menopause are from being married to grumpy old men! Give the happy pills to THEM, I sez! AAAAARRRRR!!!!!!!!!

I got into 2 pairs of "skinny pants." You know, the ones with the recipts stuffed in the pockets? J.Jill will take stuff back even if you've had it for 2 or 3 years!

Capt Deb
no "bad bad brainwreck" headache for 1 week!
Title: Re: Topamax
Post by: Captain Deb on August 18, 2007, 09:22:18 am: Don't you love people who reply to their own posts?

Studies report that the average Topamax weight loss is 10% of the body weight, which would make me shed those last 12-13 pounds to put me a little below my pre-surgiery weight and put me at my "Honeymoon in the Virgin Islands with Dr Love Weight". I was walking along Cinnamon Bay, St John, in an itty bitty red bikini and got a compliment from a young woman on my bathing suit--she couldn't believe I was 50 and hoped she looked that good at my age. Little did she know the pain I went through at the gym 5 days a week to get there!

What a way to kill to birds with one stone, aye?Actually I'd try the Topamax even if it made me gain weight, I'm so desparate to have a normal life without brainwrecks on a regular basis.

Be Well and sail on,
Capt Deb 8)
Title: Re: Topamax
Post by: Static on August 18, 2007, 04:50:11 pm: Well you two, when I said I had no side effects from topamax, I meant I had "NO" side effects whatsoever meaning I had no weight loss :'( . I have been on a diet and the most I coud lose was 10 lbs and have been able to keep that off but I still want to lose another 30 lbs so I can be my "before AN" weight. I'm up to 300mg of topamax daily. I don't think they'll give me any more than that! Maybe I should stop eating altogether!
~Karen
Title: Re: Topamax
Post by: ceeceek on August 19, 2007, 08:22:49 pm: Although I am not on topomax, it was recommended and I passed...know it had some side effects but did not realize so many....funny about the reactions to caffiene....it is what I take for headaches..I guess just proves each is an individual.....whmmmmm, who knew...I will keep reading as I know several people whom are on this, and so far they have no side effects at all,,I wonder if the side effects are more severe due the ANs? any opinions on that subject?
Ceeceek
Title: Re: Topamax
Post by: Captain Deb on August 20, 2007, 08:48:08 am: The headache specialist I see, who has experience with post op AN patients, has me totally off caffeine. And one of the foremost headache specialists on the planet, with mucho mucho experience with post AN surgery headache patients, said the drug he's had the most sucess with has been Topamax. The only side effect I'm having are bitc**iness and weight loss. Which counter-act each other. Ha-ha. You do the math! Buth then again, my headache were positively diagnosed as having migraine components and not tension headaches or any other kind.

Capt Deb
Title: Re: Topamax
Post by: ceeceek on August 20, 2007, 01:21:22 pm: Just goes to show, each person is different..I would like to have an update on how it goes though,,I am unsure how my headaches will increase or decrease after CK...so far,,after surgery they are actually better..( I beleive due to more room....) but still consider topomax cause the med I take now is lots of Tylenol..lots of caffiene and not too great for the liver, kidneys or a good nights sleep....lol
Let me know in the future how it goes if you dont mind...
and if I were losing wieght,,I would have to be in a good mood....lol
Ceecee
Title: Re: Topamax
Post by: Larry on August 20, 2007, 04:36:30 pm: Hey Deb,

Seems like the topomax is having a benefit for you - poor Dr Lurve but having to put up with the bit**iness but he'd be used to it by now ;D!!!!!

Are you having any impacts on your eyes at all?

I'm too nervous to go down that drig because of the effect on my eyes really early on. It's one thing having SSd, it's another to hav eye problems.

Laz
Title: Re: Topamax
Post by: Captain Deb on August 24, 2007, 06:38:17 pm: Had a total Topamax emotional meltdown the past two days so have had to back off to 25 mg again. How am I ever going to frigging get up to frigging 200 mg of this stuff? Oh also had a migrain attack after 2 1/2 hrs in the dentist chair getting a crown prep(drilll, drilll, drilll,) followed by a neurologist appt. Had full aura and every thing. God bless the nursie at the neuros office who hooked me up with injecta pen with 4 mg (instead of 6) so I shot myself in the arm on the way home right in the car! (Dr Love was driving) Kinda freaked out the neighbor who he had pulled over on the side of the road to talk to about his friggin TRACTOR! At least I didn't have to scramble for the syringe and the vial and pull down my jeans in from of him. "What's wrong with your wife?" "oh she's just having a full blown migraine with aura and I've stopped to talk to you about your tractor instead of taking her home to get her medication." Good thing I took my gun outta the glove compartment.

AAAAAARRRRRR!!!!!!!!
Capt Deb
please pass the Xanax
Title: Re: Topamax
Post by: Larry on August 26, 2007, 10:07:32 pm: Oh Deb,

wish I could help but as you know, I'm looking for you for the magical cure and all you can do is keep getting these headaches - how inconsiderate!!!! ;D

My empathies Deb, these meltdowns are crap - I hate them and I want a cure. (should have gone in the vent thread i guess).

Take care Deb, you have a ship to run.

Laz
Title: Re: Topamax
Post by: Captain Deb on August 28, 2007, 07:42:36 pm: No I do not have a bullet hole in my arm. In reading my last post, it is pretty rambly (is that a word?) I GAVE myself a shot of Imitrex in the arm and WANTED to shoot my hubby in the head. Clear enough? It's amazing that the after-effects of a major headache can last for days. BTW Laz have you injected the Trex yet? They make a 4g size now, which you can use 2-3 times a week. Don't know about Landownunder, though.

Topamax update--back to 25 mg from 50 due to extreme wheepies and emotional meltdown. trying for 37.5 tomorrow. My GP (a female) said sh'ed help me manage the depression. Her practice treats psch disorders, too. (Who me, a psych disorder? Just cuz I think I'm an 18th century swashbuckler?) She said there are some good generic meds that my crappy ins will pay for since I lost my prescription drug benefit (excepting generics)So trying for 1/2 a 25g dose AM and a full 25 mg dose PM starting tomorrow.

Capt Deb 8)
Title: Re: Topamax
Post by: Static on August 28, 2007, 08:57:05 pm: Good luck with that Deb, Topamax is good stuff. I just wish it helped sinus headaches too! I was doing so well with the topamax and now I just don't know how I'm doing with it because of these sinus headaches. I'm gonna hold off going to the headache clinic at Jeff until I get the sinus thing taken care of because I don't know which is which but I do know that these headaches I have now are mostly sinus and definitely different in location and intensity to what I had been experiencing since I had been on the topamax. Geez, this sucks! I was finally getting relief from the Topamax and now this, ugh! Try to stick with the Topamax tho, it's good stuff (when you don't have any sinus issues).
~Karen
Title: Re: Topamax
Post by: Larry on August 28, 2007, 10:05:58 pm: Deb,

I haven't done the injection yet - I'm a little nervous about it coz it works by restricting the blood flow and I was told, given family history of heart problems, that I should do the first one at the medical centre. If thats not enough to put a hornet in the trousers, I don't know what is.

Beam me up Scotty - pleeeeeeasse.

Laz
Title: Re: Topamax
Post by: Captain Deb on August 31, 2007, 01:59:11 pm: OK, upped the Topamax to 37 mg--12 in the AM and 25 at nite--no meltdowns or crazies yet. Will let ya know.

Laz, ya should just shoot up the stuff experimentally at the clinic just to make sure, headache or no. I must admit it is scarey at first just the thought of giving yourselfself a shot. I just went to the pharmacy and got another BOX of syringes. Went through the first one in, lessee, 8 months? There's 100 syringes in each box. Giving myself a shot for a headache now is like popping an aspirin for most prople--just second nature and no big deal. Sure beats laying in bed crying! All you need to do is grab a hunk of fat and stick it in! The thigh works for me, but the injectapen works in the upper arm pretty well, especially in the car.

Just do it!

Capt Deb 8)
Title: Re: Topamax
Post by: marie on August 31, 2007, 03:59:40 pm: Static--

For years I had terrible sinus headaches. Finally, my husband insisted that I go to a "sinus doctor". That doctor sent me to an allergist.
Had numerous tests. As a result , we found allergy to many things. What was causing the sinus headaches was dairy and soy (( and if I eat too many bananas within a short period of time (3 or 4 in 2 days) and if I eat fresh apricots and fresh sweet red cherries at the same sitting)).
As long as I stay away from these things, I don't have headaches. No more pizza, ice cream, yogurt, etc!!

My point is that if you haven't done so, you might try allergy testing.

Good luck
Title: Re: Topamax
Post by: ceeceek on August 31, 2007, 09:43:10 pm: Hey Deb..
So sorry you had yet another headache.....are you sure you are being treated correctly? also, I am unsure if anyone has mentioned it..but there have been good studies..and no..I cannot find the links so you will have to have faith..about dehydration and migraines..and I have found that if I am even the tiniest bit dehydrated, I get a killer migraine...
Maybe if you really up your fluid intake..keep practicing that yoga meditation etc relieve some of that stress by imagining killing your hubby..only in movie images...you will feel better..in the interim picture this..

"image yourself by a nice calm stream, the water trickling down, splashing on the riverbed ever so gently. Wild life in the background, little birds chirping, the ruslte of leaves in the trees, and grabbing the head of whomever is bothering you and shoving thier them under water over and over again!"
Feel better???
Ceecee
Title: Re: Topamax
Post by: Captain Deb on September 01, 2007, 09:51:34 am: ceecee,
Actually, my headache-per-week number is way down from what it used to be, and the doc who put me on the Topamax told me to drink alot of water with it, which I've done. I sort of sip on either green tea or water all day long. I'm pretty aware of the dehydration thing. The doc treating me is one of the best headache specialists in the state.

Loved the visual! Thxs fer the chuckle!

Capt Deb 8)
Title: Re: Topamax
Post by: badkins on September 10, 2007, 07:37:33 pm: Hi,

I've been on Topamax for 1.5years 400mg. 200 am, 200mg pm. I have been luck no side effects. I only lost 10 POUNDS. My headaches are still daily and at times very severe. Staying on Topamax because the drs say it helps. I thought it was suppose to get ride of the headaches. I am also taking Aviza on top of this 60mg 2-3x a day with breakthrough headaches. Good Luck I hope you find some peace and you are out of pain soon.
Beth ;D
Title: Re: Topamax
Post by: Captain Deb on September 22, 2007, 05:19:04 pm: OK another update--after my brainwreck on (AAAAAAAARRRRRRRRR!!!!) International Talk Like A Pirate Day--the holiest of holidays in my book--I upped me Topamaxdose to 50 mg. This killer was following my Tuesday appt at the Headache Wizard that I drive 1 1/2 hrs each way to see on twisty mtn road and freeway (Dr Love drives!) Didja miss me on ITLAPD???? Anyway I'm anxious to get up to the actual dose thats supposed to prevent these suckers which is supposedly around 150 mg or so, but to prevent the weepies and snarlies, I need to remember to go slowly like I'm supposed to. Next week will be 75 mg. I asked the HW about the exertion headaches I get and he said that the Topamax will raise the threshold so I'll be able to be more active with less pain. That's the plan, mateys!

Capt Deb 8)
Title: Re: Topamax
Post by: ronr on September 22, 2007, 10:09:59 pm: I am new to all this, what is Topamax? Ron from Pensacola.........newly DX with AN
Title: Re: Topamax
Post by: Brendalu on September 23, 2007, 03:45:19 am: Ron,

Topamax is an antiseizure drug now being used to help prevent migraines. It has to be taken before the headache. It won't help it once it starts but it does help the level of headache and for me it has help how many a week I have. I have gone from daily to two sometimes three a week and from all day running into days on end to a few hours in a day to several hours. I am on 200 mg at the present along with some other meds to help keep me alert.
Brendalu
Title: Re: Topamax
Post by: Larry on September 23, 2007, 04:36:47 pm: I hear a whisper that there is a new neuronting type drug coming out shortly - I'll keep ya posted.

Laz
Title: Re: Topamax
Post by: Brendalu on September 23, 2007, 07:08:51 pm: Laz,
Have you heard anything about side affects or anything else??????????????Always interested.
Brendalu
Title: Re: Topamax
Post by: Larry on September 23, 2007, 08:06:59 pm: B,

Haven't heard anything yet. Neurontin just makes you a little sluggish if you take lots. I'm taking 1200mg per day and find that I can still function Ok. Topomax was a nasty for me re the eye pressure.

laz
Title: Re: Topamax
Post by: Captain Deb on September 26, 2007, 09:57:00 am: Are you sure you weren't just having the weepies? That's what alot of us have been getting. It goes away.
OK folks Day 3 at 75 mg and no weepies or snarlies (well, that's a little bit of a lie, a little snarly at Dr love on Sunday, but he was really nice and ignored me.) Sure wish I had some prescription drug coverage for this stuff. Costs me $175.00 a month right now. When the doc ups my dose it'll be even more. Anyone have any they ain't using? January can't come fast enough.

Capt Deb 8)
Title: Re: Topamax
Post by: Captain Deb on September 26, 2007, 12:52:28 pm: BTW, Every time I up my dose, POOF, there goes another 2 pounds. My size 6 jeans are hanging off me and all my belts have no more holes to buckle. Anyone have any spare suspenders? I don't hate it exactly, but I'm going to think about eating some ice cream soon!

Capt Deb 8)
Title: Re: Topamax
Post by: Larry on September 26, 2007, 04:37:07 pm: Tim Tams for the menu.
Title: Re: Topamax
Post by: Captain Deb on September 27, 2007, 11:44:29 am: Someone'll hafta ship me some cuz there's nowhere to buy any up here in the Landupabove! At least not where I am.
(Hint, hint, Black Forest, Dark Choccie Cherry)

Capt Deb 8)
Title: Re: Topamax
Post by: Static on September 27, 2007, 03:35:48 pm: Same here Deb. Ever since Batty gave me some Tim Tams to try at the Symposium I was hooked, but I can't find em anywhere around here and believe me, I've been looking! I don't know about you, but chocolate always makes me feel better :) Unfortunately, even though I'm up to taking 300 mg of topamax daily, I've only lost 10 lbs total and it doesn't look like I'll be losing any more since I've been on this does for almost 3 mos now!
Title: Re: Topamax
Post by: Captain Deb on October 30, 2007, 09:44:40 am: OK folks 100 mg and holding--had a breakthrouhg migraine on Saturday, but that was after climbing up a ridge and down into a ravine in search of a waterfall to photograph. Unfortunately I took the risk of hiking solo as my dear Dr Love is down with a ruptured disc and awaiting surgery. I got my pix, and hiked back to the car which seemed to take for ever. But when I stopped to take a pic on the way back the headache seemed to ease up. Head position? I wear bifocals and have to look over the tops of them to see my feet on the trail, so neck extention?

Anyway, I got back to the car, blah, blah blah, then drove to the pharmacy, to get Dr L's meds and gave myself a shot there and the migraine "bloomed" (you know what I'm talking about if you've ever had one) pretty bad there. I finally drove home and collapsed moaning on the bed beside the already groaning Dr Love. and the two of us had a pain pity party all night.

I have to say despite the breakthrough migraine, that the Topamax is working. That is the first migraine I've had in a long time and I really pushed myself, hiking my a$$ up the side of a mtn and into a ravine! Me! Doing something normal people do! For once! Yay! And I will do it again until I can do it without GETTING a headache as I up my dose to 150.

So that's the news from Lake Headachebegone!

Capt Deb 8)
Title: Re: Topamax
Post by: Static on October 30, 2007, 07:40:42 pm: Deb,
So glad to hear that you're sticking with the Topomax. I've been doing ok here, but there have been other things going on with allergies. Right now, I have the itchies so bad I could scream! Ran out of benadryl and just don't feel like going out for it because I'm just tired of it all! I have no freakin clue why I itch, I just do. This has happened to me on off since about June. I think I'll go have a piece of chocolate cake! So anyway, I needed a diversion and went out and got another puppy. Another golden of course. I tried to change my picture to one with both dogs in it but I can't remember how I did it the first time and now I don't have any picture! Keep doing well with the Topamax, I'm glad you're feeling better.
~Karen
Title: Re: Topamax
Post by: Captain Deb on November 06, 2007, 05:29:28 pm: Well, now, I've gone and had 2 migraines in 10 days. Don't that just Suck! A ton of stress, though. Two long car trips that I had to DRIVE, a hike, a sick and in pain Dr Love who had to have surgery, 5 nights sleeping on the floor next to his bed at his kids, well, no frigging wonder. I have 3 doses of Imitrex left and have reached my insurance limit and the refill is $435.00. >:( (Does my insurance company know it's cheaper for me to go to the emergency room? So I'm only allowed 3 more migraines till January 1st or I'm up spit creek without a frigging paddle!

All I want for Christmas is some IMITREX INJECTABLE SAMPLES FROM YOUR LOCAL NEUROLOGIST!!! I'll send you my address. Message me. Meanwhile I'm upping the Topamax I think to 125 or 150. Calling the pros tomorrow.Love you all.

Capt Deb 8)
Title: Re: Topamax
Post by: yardtick on November 06, 2007, 05:50:09 pm: Oh Cap't Deb,

Dam insurance companies should be made to walk the plank!!! Can your Dr not write or call the insurance company to explain your AN condition. Most people with AN suffer with headaches, myself included. Thanks to you, I took your advice and I'm on topamax and it has helped. Poor Dr Love. You with migraines and him with his back :'(.

I hope tomorrow is better, and you both rest well tonight.
Anne Marie
Title: Re: Topamax
Post by: Static on November 09, 2007, 09:12:09 pm: Insurance companies/employers who set up your insurance benefits stink! I just found out, after my oldest turned 19, even though she is a full time student, that she is no longer covered under our prescription plan and vision plan. We can put her in under the COBRA, but that costs $350 a month. Wonderful thing the union did when they settled that last contract and didn't tell anyone about taking away that part of the benefits from the students. That's enough to give anyone a headache, and I've been doing pretty good lately! Good luck Deb, hope everything works out for ya!
~Karen
Title: Re: Topamax
Post by: Captain Deb on November 18, 2007, 03:57:36 pm: So I switched from the sprinkles to the solid pills hoping they'd be cheaped and guess what, they're not. I'm having to stay at 100 mg a day till January when I can AFFORD to up my dose to 150 or 200 where it'll prevent me from capping out my insurance in MAY like I did this year. $2000 is my prescription limit and my Imitrex is $90 a vial or $90 per migraine. It really is the only thing that keeps me out of the ER. Or thinking of suicide.

Topamax goes generic in 2 years, though. Then it will be $10 for me all year regardless of the cap. Yeay! Hope I stay alive that long!!!!!

Capt Deb 8)
Title: Re: Topamax
Post by: Larry on November 19, 2007, 07:07:09 pm: Deb,

from one headwreck to another - my empathy's.

You know, at times i think I'd just like to space out on some 'grass' permanently but working may be a problem. Where are the new and improved drugs that will give us permanent relief?

Hope you don't have too many more wrecks until your new allocation starts again

hugs

laz
Title: Re: Topamax
Post by: Captain Deb on November 19, 2007, 07:16:59 pm: All I want for Christmas is some
IM-E-TREX!!
(sung to the tune of "all I want for Chrismas is my two front teeth,"of course!)

Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirateface_crying_sm_wht.gif)
Title: Re: Topamax
Post by: yardtick on November 19, 2007, 09:39:19 pm: Great new picture Capt Deb!!!

I want a new left side of my face that doesn't have any pain, no twitches, no numbness and NO HEADACHES.

I also want this black cloud to lift off of my shoulders.

I'm not asking for much am I?
Title: Re: Topamax
Post by: Static on November 21, 2007, 08:32:20 pm: Hey Deb, I like that song. I think my words will be, All I want for Christmas is a Sa-Lu-Shun! (yeah, I know how it's really spelled). I feel like I'm back to square one. Weather starts getting cooler, headaches start getting bad again >:( I am so sick of explaining myself to doctors who don't understand me or what I'm trying to explain and they just tell me to write it down, keep a journal of it, blah blah blah. I'm with Laz, I just want to space out for awhile!
~K
Title: Re: Topamax
Post by: Captain Deb on November 24, 2007, 09:32:04 am: GUESS WHAT???
I GOT IMITREX FOR CHRISTMAS!!!!!!!!!!!!

I'm so happy I could do THIS!!!!!

(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pug_back_scratching_lg_wht2.gif)

Thanks, Phyll, my Favorite jewish Santa and Beanie, too!!!!!

Hugs and kisses,

Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
Title: Re: Topamax
Post by: yardtick on November 24, 2007, 01:42:45 pm: Do you have a headache today? I'm dying. The left side of my head and face, down my neck and some of my shoulder. I woke up with it. I have med's like imitrex but I'm afraid to take it. I feel like the top of my head is going to explode when I take imitrex. I took fiorinal c, but it isn't really helping. I'm going to bed after I read the postings on the forum.

Capt Deb, Phyll and of course Beanie, you truly are special. I tell everyone about this wonderful forum. I've told them they can just read the postings as guests to get the sense of family that keeps me coming back for more.

The bond of friendship and the spirit of the holidays.......I'm too emotional today........pain does that to me.

The pharmaceutical and insurance companies could learn a few things from Phyll and Beanie !! God Bless you!!

Anne Marie
Title: Re: Topamax
Post by: Captain Deb on November 24, 2007, 03:53:53 pm: Yes, my head does feel like it's exploding for a few seconds after I give myself a shot of Imitrex, but it sure beats suffering through an 18 to 24 hour suicide migraine! I get to suffer through about 1/2 hour migraine followed by a several hour low grade headache instead. Sure beats the heck out of the ER.
Had one last night as a matter of fact!

Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
Title: Re: Topamax
Post by: yardtick on November 24, 2007, 09:26:27 pm: So, is that a common side effect of the imitrex? I'm still dying.

I've had one hell of a stressful week. The weather has been cold, dark stormy....freezing rain, ice pellets and snow. I hate winter.

Oh yeah I forgot, a mother-in-law who ruined another Christmas could have contributed to this dam headache.

Anyone out there need a moher-in-law. I pay for her flight. One way ticket of course ;D
Title: Re: Topamax
Post by: ppearl214 on November 25, 2007, 09:29:05 am: *a speshal note from Beanie, the "toot" Queenie*

woof-arf-arf! Heh-heh-picture-woof! Arf-Arf-bellyrub-woof! Woof-arf-arf-no migraines-woof-arf-arf-woof-heh! :-*

xoxooxoxoxoxoxox
Beanie
Title: Re: Topamax
Post by: Static on November 26, 2007, 04:52:56 pm: Yard, Feeling like poo here too. I think the weather changes more in the winter and makes things worse, at least it does for me anyway; I hate winter too. Talked to the neuro today, going to see him soon then heading down to see Dr. Silberstein next. I fell on my head, literally, Saturday night, just from bending over slightly and I just kept on going, didn't even realize what was happening. Balance is totally out of whack. I waited to call my neuro today and he said to call the GP, now I can't get him cuz it's too late. Will call tomorrow. The pain in my neck and shoulder is horrendous and advil or excedrin just doesn't cut it. Going to use a heatpack again but it's just getting worse each day (I also got a rug burn on my forehead).
I think you should ship your mother in law to my mother in law and they can make each other miserable! Sounds like a plan to me!
~Karen
Title: Re: Topamax
Post by: Captain Deb on November 26, 2007, 05:24:34 pm: 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(http://i235.photobucket.com/albums/ee60/Captdeb_photos/panda22.gif)
Title: Re: Topamax
Post by: Static on November 26, 2007, 05:53:39 pm: 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
Title: Re: Topamax
Post by: Captain Deb on January 10, 2008, 01:28:34 pm: 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(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
Title: Re: Topamax
Post by: lori67 on January 10, 2008, 04:03:54 pm: 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
Title: Re: Topamax
Post by: Static on January 10, 2008, 04:11:45 pm: 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
Title: Re: Topamax
Post by: lori67 on January 10, 2008, 04:56:42 pm: 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
Title: Re: Topamax
Post by: Static on January 13, 2008, 08:25:17 am: 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
Title: Re: Topamax
Post by: Captain Deb on January 14, 2008, 01:53:05 pm: 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(http://i235.photobucket.com/albums/ee60/Captdeb_photos/happy_face_mummy_goofing_around_md_.gif)
Title: Re: Topamax
Post by: Captain Deb on March 25, 2008, 01:46:09 pm: 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(http://i235.photobucket.com/albums/ee60/Captdeb_photos/happy_face_mummy_goofing_around_md_.gif)
Title: Re: Topamax
Post by: Captain Deb on October 10, 2008, 11:33:23 am: 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(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
Title: Re: Topamax
Post by: yardtick on October 10, 2008, 12:35:08 pm: Capt Deb,

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

Happy Days,
Anne Marie
Title: Re: Topamax
Post by: Captain Deb on October 10, 2008, 02:05:06 pm: 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(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
Title: Re: Topamax
Post by: Larry on October 10, 2008, 03:22:09 pm: 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
Title: Re: Topamax
Post by: MamaGina on October 15, 2008, 12:09:05 pm: 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. :-[
Title: Re: Topamax
Post by: ppearl214 on October 15, 2008, 01:29:01 pm: Quote from: MamaGina on October 15, 2008, 12:09:05 pm
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
Title: Re: Topamax
Post by: Captain Deb on October 20, 2008, 03:55:51 pm: Another Topamaxette! Welcome MamaGina! Jeez I wish I dint hafta take this s**t either!!!! Makes ya moody don't it!!! I'm up to 150 mgs but I had a real doozy the other night, but I caused it myself by doing a bit of mountain climbing, the audacity of me, doing something normal for a change, like going hiking! Really! The noive!
Beside, I'm in the donut hole and got some generic Topamax from India made by Johnson and Johnson (supposedly) It cost about 1/3 of what the regular stuff does and should hold me until they work out the patent conflict in the courts so they can start releasing the generic version which should be soon. My Medicare Part D kicks back in in Jan anyway.

Again Gina, Welcome to the forum!

Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
Title: Re: Topamax
Post by: Brendalu on October 20, 2008, 07:46:57 pm: I am up to 150 Topomax twice a day and Midrin (up to five capsules in twelve hours). The Midrin usually knocks me out after the third one, so I don't know if they are working or not. The Doc says she is keeping me on Topomax (300) for another month and if it isn't doing more for me she will bump it up another 100. Sounds more like I will be on Dopomax than Topomax! Can't handle the train wreck headaches so I'll keep on keeping on...................
Brenda
Title: Re: Topamax
Post by: bridgie on November 19, 2008, 03:27:43 pm: I've been tapering off the MS Contin, very slowly and also increasing the Topamax. All this has increased the rate of weight loss to an alarming rate. My mood has become depressed as well. My doctor is getting worried and is considering pulling the plug on the topamax. I'm drinking Ensure etc. I look awful, not flattering. I'm about 5'5" and now weight just above 100 lbs. I feel so overwhelmed with this and everything else going on with my life right now. Hopefully this whole thing will turn around shortly.
Bridgie
Title: Re: Topamax
Post by: Captain Deb on March 10, 2009, 05:36:24 pm: Just thought I'd update all you headachers (brainwreckers) on Capt Deb's adventures in Topamaxland. I have been on 150 mg of the stuff for almost 2 years and I believe it has really helped my headaches but alas it has really turned me into a turnip mentally and a raving lunatic mood-wise at times. I went off my Celexa anti-depressant just before my 5 week trip to Sunny Florida and I figgered with no men around and bee-oo-tee-full Sunny Weather I'd be OK detoxing. I did fine until I got home with my Man and a raging blizzard and cabin fever again. So I've decided to reduce my Topamax dose to the bare minimum I can tolerate without becoming a raging headacher again. Down I go to 100 mg this week. Also decreasing the Neurontin to try to recover some mental clarity. I have GOT to get some painting done for the spring gallery season!

While I was in FL during the 5 weeks I had 2 really wicked brainwrecks, which is not bad given my history. Unfortunately the last one lasted the final 2 days Dr Love was there with me and kinda ruined his trip as he only had 5 days down there to play.

That's the news from Topamaxland--I'll let you know how things go......

Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate-smiley-12.gif)
Title: Re: Topamax
Post by: Brendalu on March 11, 2009, 04:32:32 am: I was on 400 mg of Topamax and decided it was time to try to wean off. I did it slowly and with the doctor's guidance. I got down to 100 and started with the brainwrecks again fast and furious. I am back up to 250 and I still have the migraines but not as often so I am going to try to stay at this level for a while and see if they even out.
I am anxious to hear how it works out for you. I'm rootin for ya!

Hugs,
Brendalu
Title: Re: Topamax
Post by: Captain Deb on March 13, 2009, 06:53:35 pm: 400 mg is a whopping, not to mention expensive dose, my pixie! And I know it makes you skinny and I know you are of the petite persuasion so that's a huge dose for your body weight. You must have to be on some psych meds with that dose am I right? I have to take them with my 150 mg. I also think all these meds are screwing with my immune system because I catch every cold germ that comes down the pike despite repeated hand-washing especially around the grandkids.

Good Luck holding at the 250. I'm toying with the idea of going off completely just to see if I've gotten any better now that I'm completely off any kind of pain meds.

Capt Deb
Title: Re: Topamax
Post by: Captain Deb on April 02, 2009, 04:09:55 pm: Down to 50 mgs of Topamax every other day and holding--had slight headache all day yesterday after MRI--assuming it due to stress of other health probs that have cropped up.

Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate-smiley-12.gif)
Title: Re: Topamax
Post by: Brendalu on April 03, 2009, 04:26:59 am: Capt Deb,
I wish it had made me skinny, but it had just the opposite affect on me! I am a strange bird, to say the least. I am back up to 250mg and holding. I'm glad you are having minimal effects with the low dosage. Hopefully, they will get your "other" problems taken care of and you will be back to mountain climbing by the time the weather warms up enough to do it again!
I am taking Midrin when I have "headache" and it works better for me than Imitrex. Go figure.
Spent most of yesterday in bed...between the headache and the legs....I am ready to amputate both!
You take care.
Hugs,
Brendalu