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DogMom22 05-12-2006 06:29 PM

Re: Calling all Topamax Users (topiramate)
Dogs - Don't you just love them! That is new story for me to add to my collection. I have done lots of rescue work with Labs although I don't do much now. Yes, BlueStream it sounds like you over did it - maybe thinking you were starting to feel better and anticipating feeling even better. Anyway, rest up. Definetely ask the doc about the breathing, I don't know if that is the topa or not. I hope the injection helps you, let us know and hang in there.

Blasterboy 05-13-2006 01:12 AM

Re: Calling all Topamax Users (topiramate)
Hey guys the Topamax and Lyrica mix is working well. I'm on top dose of both drugs (300mg Lyrica and 400mg Topamax) and it's enabled me to drop down my Klonopin dose and hold of from an assumed Oxycontin increase and my pain is manageable at the moment although at levels 4-5, I guess we have to live with that and just allow it to be. So anyone on the Topamax for chronic nerve pain, don't be afraid to ask your PM doc about adding Lyrica to the mix; that's been my experience anyhow and I do tolerate drugs very well; my system had to learn to do that in my drinking days I guess!?

BlueSteam 05-14-2006 08:41 AM

Re: Calling all Topamax Users (topiramate)
I did rest up yesterday and I will most of today, I will never over do it again. I went to my appt on Fri and they had cancelled it because I am scheduled for my injection. I guess it is standard to do that. I was very upset that no-one had notified me since I drove over 50 miles--not to mention I had questions. I did corner the nurse, who in turn cornered the dr, so a few questions did get answered. I asked to go off of the topamax, so I will slowly start backing off of it and see what happens. I wanted to know why I don't have anything else for pain too, but it was hard to ask too many questions in the hallway. I may find out that the topo is helping more than just my headaches and go right back on it. I just want to feel myself again. I mean, I think I'm tolerating it pretty good, but I'm so unsure of myself sometimes. I was wondering about the Lyrica too. What does it do? The dobermin saw his first bull snake yesterday. He was fine with it as long as my husband was holding it, but when he put it down and the snake started hissing and puffed up the dog about wet himself and took off running!! It was soooo funny. He was afraid to walk in any grass for about two hours after that. But then so was I. I really hate snakes and it takes me forever to walk anywhere because I have to watch every step I take. We have a lot of rattle snakes here. Happy Mother's Day!!

BlueSteam 05-14-2006 10:06 AM

Re: Calling all Topamax Users (topiramate)
OK--I'm only on my second day of going down on the topo and I am feeling kind of out of it. I was at 100 mg's and now down to 75. 50 at night and 25 in the am. Do you guys think it normal to feel strange going off of it? I even think I'm feeling a little headache too. Maybe I should have waited until my neck calmed down from all the sanding and painting I did--plus I still have to put everything back. ouch. Stupid too because we went out Fri night and had a few drinks--second time in a couple weeks--not really like us, we hardly ever drink. But that was the day before yesterday. I suppose you have to look at the whole picture too, because I'm not eating a whole lot. I've lost ten pounds in the month I've been taking the topo. Actually just in the last two weeks. Blasterboy--didn't you go down?? Did you feel ok? I can't remember off of the top of my head--who did what, sorry. dopamax moment. any comments would be nice, thanks.

Blasterboy 05-15-2006 01:22 PM

Re: Calling all Topamax Users (topiramate)
Here's the the **** of all Topamax moments!

I'm watering the garden with hose pipe in one hand and my cell phone in the other and I've just spoken to someone on my phone and I put my cell phone on key board lock-out; about 10 minutes late I realise I'm still holding the bloody phone to my ear!

O well, blame it on the meds, lol.......

DogMom22 05-16-2006 10:07 AM

Re: Calling all Topamax Users (topiramate)
Blaserboy! That was a good one with the phone!

Hey when I went down from 100mg to 50 mg of topamax I felt funny for a few days - also I notice when I forget to take it for one day I see extra out of it. I'm not sure but maybe this is why they say to not stop taking it suddenly. When I lowered I went down to 75mg for about a week then down to the 50mg.

coffeegirl2 05-16-2006 02:03 PM

Re: Calling all Topamax Users (topiramate)
Topamax user since 2002. Wow, I have learned more from reading this post. :bouncing:

One thing that happened to me. I ended up gaining weight from Abilify after I had lost 25 pounds from the Topamax. Of course, that weight that I had lost from the Topamax was pre-gained weight from Paxil!! UGH!!! Darn meds. What a merry-go-round.

I take Topamax as a mood stabilizer. It has been very helpful for me and works in conjunction with Wellbutrin XL, an antidepressant as a combo mix. I too, suffer from the cognative side effects. One contineous thing I do about every single day is this: I want to always put the coffee pot into the fridge, and why? Who knows? LOL It is right there, and you would think "Gee, the coffee pot does NOT belong in there!" But I certainly try to put it there only because that drug tries to re-do my brain somehow with brain fog.

Thanks for all the information. I hope to stop by here again. At least I've learned something new about this so I can inquire at my next pdoc session.


BlueSteam 05-16-2006 02:28 PM

Re: Calling all Topamax Users (topiramate)
Ha! I am so not alone in the wacky things I have been doing lately. I'm so glad that nobody sees some of the things that I have done. (I still can't find my keys) I had to go back up to my 100mgs and I have a feeling that unless the injection helps me, I may be going up even more. I shouldn't have done the sanding and painting--things are very irritated and I'm fighting a lot of pain and headaches now. I've been very nervous about the injection, but I found out a lot of info on the spinal cord board. The thought of a needle in my neck bothers me more than one going in my lower back for some reason. I have until May 5th to be scared :eek: I will be sedated and I heard that I shouldn't remember a whole lot or feel too much--I hope that's true.

JackieH 05-28-2006 04:31 PM

Re: Calling all Topamax Users (topiramate)
:wave: Hi Everyone,

I'm from the ACDF crowd on the spinal disorders board & bluestream sug. topamax to me a few weeks ago. So...I told my doc about it & am 10 days into it & up to 50mgs. (Had dbld. cervical fusion Jan.30th didn't help arm pain or headaches at all.)
I'm tollerating the drug OK, I guess. However, no pain relief at all yet ... headache's really bad all the time....but I am DETERMINED to give this a good 6-8 week try. Gabapentin gave me 50% drop in pain for a few months but it makes you gain weight & I want less pain.
Something very helpful I learned from the --- is to drink 1/2 to 1oz of water per lb of body weight. For me that means drinking like 20 big glasses of water a day. But it really helps with side effects AND more importantly makes sure you avoid getting kidney stones.
You can have gatorade, Crystal lt. stuff as water, too so it's not so bad.
Doc didn't tell me this.
I also take cranberry suppliments to avoid kidney stones. (Already was taking them for chronic bladder infections.)

Anyway...I didn't read this whole thread, so I appologize for any repeat info. Hope I was helpful to someone. And bluestream...thank you so much for the Top. idea...i think ;)

Keep in touch,
Jackie H. :)

BlueSteam 05-29-2006 07:19 AM

Re: Calling all Topamax Users (topiramate)
If you need anything just let us know--it's been quite a trip and I'm still finding new little side effects here and there, but it is getting easier. I do admit there are days when I do wish I could just quit taking it. I love having the people on this board to turn to, they have been so great!! Angela

BrittleBones 05-29-2006 07:47 AM

Re: Calling all Topamax Users (topiramate)
Hello fellow Topomax users! When this thread was started, way back when, I was kind of irritated that one little medicine could generate SO MUCH reaction on the board. :rolleyes: Every day I checked in there was that darn Topomax thread still alive and kicking!! :yawn: Little did I know that I would soon be more than grateful that people took the time to fill 17 screens with info on the drug. My pain management doc (who I saw last Friday) has changed my medications. He has given me a schedule to follow to start tapering down my methadone (I was taking 180 mg. per day). I told him that the Zonegran that I had been taking for nerve pain wasn't doing anything for me and that I had titrated down from 400 mgs per day to 100 mgs. per day and now would like to stop taking it all together. He was fine with that. His next suggestion was...(drumb roll please..) ....Topomax!!! Boy was I ready to talk about Topomax!!! I sounded like a walking, talking PDR. He was very impressed! So I'm going to give it a try. I started last night with 25 mg and will take 25 mg. twice a day for a week and then titrate up every week until I hit a therapuetic dose of 200 mg. per day. So far I haven't noticed any side effects other than a little light headedness. I'm PRAYING that I get the Loss of Appetite side effect as I'm at least 30 lbs. overweight from spending close to a year in a wheelchair while munching on steroids. So to finish up here, I just want to THANK ALL OF YOU for the endless chatter about Topomax. If it weren't for all the posts on the subject, I wouldn't have been as well versed on the subject as I was at my doctors appointment. All the best - KathyMac :wave:

JackieH 05-29-2006 12:55 PM

Re: Calling all Topamax Users (topiramate)
Hi Again,

well, here we are together then. Don't forget the water tip --- as the water helps lessen the brain-fog & tingles you can get.

Angela, the relief you got from your cervical headaches was my inspiration. I'm so happy for you. I pray that the side-effects lesson for you as I've read they will over time. Hang in there & remember how bad those headaches can feel. I've had a constant 7-10 on the pain scale since going off the Gabapentin last month & I'm getting claustraphobic in my own head....coupled with the arm pain..arhg. I do know I could have a much worse life tho so I am grateful.

Keep in touch.

Kathymac....hang in there & keep us posted, K? I think I've lost 5lbs in 10 days on it...don't have a scale but the jeans needed a belt yesterday. (Not that this is a reason to take such a strong drug but if it takes my 30 off, I'll be glad for that too.) My appetite got less & less each day, btw.

Bye for now,
JackieH :wave:

BlueSteam 05-29-2006 08:51 PM

Re: Calling all Topamax Users (topiramate)
Kathymac--I really hope it works for you, I really felt like I had been let out of prison when those headaches went away. I over-did it with some sanding and painting and they came back just a little for about two weeks. I was so afraid my dosage would have to go up, but things seem to be settling down again. Thank goodness. I will behave from now on. You know how spring makes you want to do things. How do you sleep on the steriods? I've been put on them for a short time and I feel like I am going to go crazy. I am jittery, dizzy, and I can't sleep. Add that to the topamax side effects--I should be in a nut house.

JackieH--Hi! I'm not sure what Gabapentin is, but when I get done here I will look it up. Honestly, right now water is the only thing that tastes good and even it is weird sometimes. Most food, I've noticed tastes like it's been overly salted to me. I've lost 10 pounds and holding in a month and a half. Some days I don't eat at all and my daughter has to yell at me, and then other days I still pig out. My mornings are still the most confusing for me. Maybe if I lay of the coffee it would be better. lol. But things aren't so bad. I am scheduled for an esi on June 5th, so maybe my pain will be better then. Aranger has helped me get over my fear of the esi a lot. Did you ever have one? I am thinking of you and I hope the topamax starts working. I actually had relief in my first week. A lot a people do have to go up to higher dosages is my understanding tho.

Please keep in touch, and let us know you are doing. Angela

JackieH 05-30-2006 06:38 PM

Re: Calling all Topamax Users (topiramate)
Dear Angela,

I wish we could sit & have a bottle of gatorade together on the beach & chat. Wouldn't that be nice?
Forgive me, I cannot remember....did you have the acdf surgery for your neck? Mine was a dbl c5-7 w/bone from my hip on Jan.30th but has not helped the pain at all.
I've not had an ESI, however, I did have a cortisone injectionin my arm/shoulder a couple weeks ago for the right arm pain & it didn't do a thing for the pain either.
I sure hope the ESI helps you. I'm assuming its for your arm pain as the Top. has helped the headaches?

My biggest struggle right now is living with a constant 6-9 on the pain scale headache. It's driving me nuts! Waking up on the concrete pillow feeling every morning, holding my head in my hands & crying every night. I miss the Gabapentin(neurontin) which kept it at 3-6max.
When I read your comment about the Topamax taking your headache away totally I just had to try it. Also, I am happy to be losing rather than gaining weight.

You're right about the too salty thing. And it is good that water & healthy foods are what we crave more. I'm just so tired of all this pain. :(
My headache is almost averaging an 8 lately. I really can't function this way. I know the Gab. took a long time to work....started at 300mgs & had to go to 3600mgs to really get help. So I'm assuming I'll need way more than the 50mgs of Topamax I'm on just since Friday.
I'm trying to be patient. I see doc. on Friday & will ask for some marcain shots in my head which I've had & help for like an hour. Atleast I can go home & fall asleep happy for a while. :yawn:

How old is your daughter? Mine is 12. I have a 15yr old son also & hubby is very supportive. I just am no good to any of them like this.
I have a strong faith in my Maker & pray all the time for peace & mercy. 'Couldn't get through this w/out Him.

Please keep in touch, Angela. It's your relief that has given me so much hope for this drug & what lies ahead.

Take care,
Jackie :wave:

BlueSteam 05-31-2006 07:48 AM

Re: Calling all Topamax Users (topiramate)
Hi JackieH!! I would love to be able to meet up with you. I remember writing (I think) about moving to this little town of my husbands and still 7 years later, really not having any friends here. Not anyone close, and I really love to be able to come to the boards and chat. We also live 17 miles out of town, so it's really lonely. I wish you could get rid of your headaches. I know how you are feeling. I don't know what to tell you to make them any better, as I tried everything I could. I did go thru a lot of ice!! I will tell you tho that crying makes them worse. I'm sorry. Life was really bad for me with those headaches and I do thank God for my children because sometimes I just didn't feel like I could do it anymore. I don't like to admit a weakness like that, but you probably know how I felt. I have that concrete pillow feeling all night long. Thought it was just me. How strange. I haven't had any surgery, my new pm dr actually just diagnosed me. My other dr all these months told me is was just a muscle problem. I have a couple of bulging discs in my neck and three in my lower back and ddd and athritis in back also. They also told me I've got athritis in my hips and knees also. Jeez I'm only 37. The pm said that surgery just isn't an option for me. The neck problem is effecting my arms tho. I can move my right arm and it will feel like I've been stabbed in my left arm! I did ask if the esi would help with the headaches and the pm didn't sound too positive about that. I would like off of the topamax. I do have a lot of lower back pain, but they aren't doing anything about that. The nerves kill my right foot--I was told that neurotin was good for that. Don't know why I'm not taking that. Why won't your dr put you on both of the med's?? There are a lot of people on the boards that take both the topamax and the neurotin. How long is your dr going to give the topamax a try? My guess would be up to 2oomg's. By then you would know. I've done so much reading--can you tell?

My daughter is 14--she is such a doll. She was so pretty last night and stood so proud. I felt bad tho, when it came time for her and another girl to get their diploma's-theirs were missing! The other girl cried, but my daughter laughed--they clapped for them. Poor things. I also have a daughter who will be 19 on the 7th and a 16 yr old son who lives with his dad. My husband really does love me, but is not helpful at all. I think thru-out all of my struggles he has handed me one cold washcloth. It is very hurtfull, and sometimes I think I would heal faster with more support. I don't know. But it hurts. I'm really glad to hear your husband is so supportive!!

I woke up Sat night with horrible pain in my head and thought my topamax wasn't working anymore and wouldn't you know--a toothache!! So I'm off to the dentist today. I am on work comp and did just lose my job over my injury and today I also lose my insurance. That was close. Lucky to get in. I doubt all the work will get done today--but it's start. I really don't like dentists. All the same, it's a relief that it's not my neck causing the problem this time.

I do wish we could chat! Please keep in touch--I'm here for you!! Angela

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