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JackieH 05-31-2006 02:40 PM

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

Congrats to your little girl! Good attitude. :D
I'm sorry you didn't get one of those servant-hearted type of hubbies...but trust me...from what I've heard, they are very rare. And none of them are perfect. :rolleyes:

I'm glad you're not having surgery. I wish I'd never had mine to be honest. All I have to show for it is more pain, a sore hip and a 4" diagonal slash accross the front of my once lovely neck. ;)

I think if the Topamax works on the same 2 receptors in the brain as the neurontin plus 2 others....that taking both might be over-kill but I would be open to it if down the line the Top. helped 1/2 way I'd try adding the Gab. again. If you only gain like 5lbs every 6 months on biggy. But over 10 years you could end up huge w/out even realizing what was happening. I really like the Top. effect better. Even tho WHAT is with these dreams at night? Concrete pillow sleep is one thing & I take Lunesta. Since Topamax I've been having some weeeeird dreams & they seem SOOOO real. Do you?

Well, Angela, it must be hard being so far from town. I live in Canada but was raised in Los Angeles. I live in the wine country region here & it's beautiful but there are still plenty of people & places around. I do NOT miss LA at ALL!!! (Just moved here 2 years ago.)
Try to do like me & GET OUTSIDE for walks. When you were in your headache prison, did you find that putting your make-up on & getting dressed & out made you feel anybetter? It doesn't take the pain down from an 8 to a 7 type a thing but it does make you feel more alive which is very important. I'm only 42 & we are both looking at many more years. Our children need us. And we need to remember that there are so many SO much worse off. (Not to belittle our pain.)

Hang in there, Angela. I'll try to check back daily whenever possible. Did you look at the Topamax Trip yet?
Let me know.

I'll be praying for ya,
Jackie :wave:

JackieH 06-01-2006 12:41 AM

Re: Calling all Topamax Users (topiramate)
I'm so sorry to hear about your toothache. Argh! Talk about insult to injury. I know sometimes the headache's so bad all my teeth hurt so I can relate a bit right now.
Hope it's fixed & at least your mouth is healthy. :D

BlueSteam 06-01-2006 09:25 AM

Re: Calling all Topamax Users (topiramate)
Hi Jackie--I don't recall having any weird dreams---I sure did when I took flexeril tho. Bad dreams!! If I'm having any dreams now, I'm not remembering them. The topamax has made me sleep better, it took about two weeks--if I remember right. I do know someone taking the sleep med, I'll have to ask him if he has any strange dreams. Maybe it's the combo.

My visit with the dentist went well--sitting in that chair for three hours was horrible!! I am in so much pain today! Ugh!! I do have a slight headache, but I thought maybe I would. We weren't able to do all the work, but they said my teeth weren't in too bad of shape, so I was happy to hear that!! I'll just have a sore jaw for a few days. It will feel good just in time for the esi.

Surgery is such an iffy thing--some people it just doesn't work for and then others seem to do so well with it. I was almost relieved to hear I wouldn't be having it. Other than medications do they have any other options now for you?? In time that seems like a lot of weight to put on with the neutotin!! wow. I don't blame you for not wanting back on that. I am going to see if I can take the topamax earlier than I normally do, to see if I can funtion better or sooner in the day. I take it 12 hours a part right now. I guess that's the best way. Nine pm and Nine am. I want to try for six. I was told bedtime. I don't see what it matters.

I went to Canada for my senior class trip, 20 years ago this year! It was so beautiful!! I want to go back so badly. You are very lucky to live there. Montana is a great place to live also. I feel very fortunate to be here. Well, I really don't feel so great today, everything hurts--just can't sit here today. darn it. Better go. I hope your headaches aren't too bad today. I'm glad your here. Just wish it was for differant reasons. Take Care--hope to talk to you tomarow. Sorry about the spelling errors--topamax side effect!! I'll be praying for you also. Angela Ps. What is the topamax trip??

JackieH 06-01-2006 12:21 PM

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

'Glad the dentist is nearing the end. :D

[b]-- Please do not advise users how to find other posting boards --- HBMod07[/b]

Montana is beautiful, too. I think the Robert Redford/Jennifer Lopez movie, "An Unfinished Life" just now on DVD is supposed take place in Montana, only... guess what, they filmed it in my province...about an hour north of where I live in BC. It's not a bad movie if ya haven't seen it. here's another strange Topamax side effect. I'm tired but wired at the same time. ( headache is only a 7 right now when it's usually an 8 this time of the morning. :cool: 'Still wearing my sunglasses tho.)
Anyway, I find myself having this mean little personal trainer in my head. My body is tired & weak & IN PAIN but the impy little voice says, "Get off your post surgical butt & do that work-out video....get outside & walk to the top of that steep hill....chop all the veggies for that salad even tho your right arm is about to fall off from the pain~just do it!!!" :mad: It's not one of those chipper let's turn over a new healthy leaf moments in life. However, extra muscle aches aside, the feelings of getting back into shape again, losing the extra pounds, craving healthy foods & WATER instead of diet coke it just all feels so right.
Even tho it's like there's a womens' prison guard with a whip in my head telling me to get healthier SO I'LL FEEL BETTER DANG [email protected]#@[email protected]#$!!!!
j/k ;)
It's the only thing keeping me possitive about the Topamax since I've not had the pain relief from it yet. (And wouldn't expect to after 10 days anyway.) But the hope of actually become athletic again...that's an awesome hope.
Tell me Angela, has this drug had you excercising more? Did your 10#s come off just from not eating or have you been at all more active from it? I know you're, too. (But tell that to the prison guard lady.)

Talk to you soon.
Jackie :wave:

DogMom22 06-01-2006 10:55 PM

Re: Calling all Topamax Users (topiramate)
Welcome Kathy and Jackie. A few weeks ago I promised I would update how I was doing with topamax. I went on it in March for migraines and back pain (undiagnosed) presumably nerve pain. I tirated up to 100 mgs and just couldn't function - dumber than a box of rocks. Went to 50 mgs once a night and was still having problems and then one day noticed that I was thinking clearer, words were coming out right etc. I have been at 50mgs for 5 or 6 weeks. I have almost none of the negative side effects and my appetite has returned a little bit but not much. I will get the tingling fingers and toes when I don't drink enough fluids. I have lost a total of 12 pounds without trying. I am very rarely hungry and I stop eating when I feel even a little bit full. My migraines are better that they were before but I still get them. I no longer have daily headaches. Topamax has alos helped my back pain because when I forget to take topamax the next day my back pain is not controlable with vicodin. Topamax also helps my foot pain from a failed foot surgery - which is definetely nerve pain. The plan with my doc now is fo me to go to 75mg once a day and later to 100mg since 100mg is the amount that generally resolves migrains. But I decided to stay at 50 for another month and enjoy feeling somewhat normal for a while.

Kathy - the weight loss effect kicked in for me when I was about 2 to 3 weeks into taking it at about 75mgs, at first I had a few days where I was so 'dumb' I forgot or just didn't know I was suppose to eat. From there it turned into and continues to be very subtle, I noticed I wasn't hungry and that I became satisfied sooner when eating - now I often don't clean my plate. I have used the 'cues' to lessen the amount I eat. Sometimes I have to remind myself to eat something.

JackieH 06-02-2006 01:17 AM

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

...1st a quick comment to HBMod07....'sorry about that. I promise not to mention other boards again. I just learned some valuable info from those folks but I understand the rule so I'll abide. :)... I'm so happy to hear that your side effects mellowed & you hung in there. YAY that your pain is being helped! Congratulations!
Angela's relief plus yours are such an inspiration. I'm going nuts w/this headache. I am determined to get to atleast 100mgs & give it at least 8 full weeks before I even think about going back on neurontin. The weight loss is the one possitive in all this suffering right now.
Thank you so much for sharing your story DM. I really appreciate it. Please continue to post updates. I will also.

& What wonderful news that it's helping with the foot nerve pain! YAY!!!! :D
You had a failed surgery there? I can relate from my recent neck surgery. My arm pain is just as severe as it was prior to surgery. :confused:

Keep drinking that water...& some Gatorade, need some electrolites once in a while. (I also like Crystal Lite as some of my water....makes life more interesting.)

Bye for now.
Jackie H :wave:

BlueSteam 06-02-2006 08:59 AM

Re: Calling all Topamax Users (topiramate)
Hello Everone!
DogMom--I've been wondering about you!! I'm glad you are doing a little better on the topamax. I have some really bad foot pain--maybe in the end it will help that too. Forget to eat? You're right---and you are not alone there!! Any way I'm glad you are doing ok. Glad to hear from you!!

Jackie--I'm sorry I got you into trouble there--didn't know what was going on. :eek: When I was having my headaches, excercising was out of the question as it really did make them worse. And if I woke up without a headache :D and did just a little bit of anything--then I got one. After I started taking the topamax I felt the same way you do!!! I think you may start to feel a little bit better and you may have just a little more energy and yep, there is some nasty person there with a wip telling you to get moving. I would slow down a little tho and let your head have a chance to get feeling better so it doesn't keep throbbing. How about just doing some stretches to keep your muscles limber for about a week? See how your head feels then? I am really serious--you should try this!! I didn't do much the first couple of weeks. It all came after that. I was forgetting to eat and then not being able to make it all the way thru a meal. I did go thru about two weeks of craving cake!! I was never a cake eater--I went for the ice cream. My daughter will question me every day now on what I ate and when---then I get yelled at. She will threaten not to eat if I don't. We don't want that. Once my head felt better I was able to start moving a little more. I find that I am over-doing it tho as my neck will tell me I am. So will my arms and lower back! I seem to have a lot of other problems too that slow me up, but I hate so sit still. So after nearly two months now, I think it is a combo--but mainly not eating as I still can't do too much physical stuff.

I found out some more info on some of my other problems yesterday by reading a little bit of another thread, so I am going to try to do some research today. the topamax makes concentrating kind of hard sometimes. Have you ever heard of RSD?? It may explaine a lot of things.

I am so glad your pain is down a little today--it's a big start. Take it easy and don't do anything extra. Let me know how you did. God Bless. Angela

BlueSteam 06-02-2006 11:09 AM

Re: Calling all Topamax Users (topiramate)
Jackie, Boy I can't seem to get moving today. My husband told me I am probably so stiff from being so tense in the dentist chair. I never thought of that. I've been researching the RSD today. How scary. I took a trip today---"BanditandMe"-that's one of my daughter's dog's. Thanks for the info on headaches and migraines. There is so much to learn! I was wondering if you have had any vision changes? I keep forgetting to ask. Hope you are taking it easy. Talk to you tomorrow.

JackieH 06-02-2006 12:41 PM

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

No vision changes, but I my eyes do feel a little watery & it feels sometimes like it's a sinus headache (which it's not...had the x-ray long time ago,) in that my nose & throat have that little bit of a "I might be getting a cold" thing. Does that make sense at all?
Anyway, I'm not sure if the eyes watering is from the Top. or not & it's so mild I hardly notice it anyway.
You know bad eye pain w/topamax is not a good thing, right? Hope you're OK.

I really appreciate all the advice about taking the excercise bug easy at first. I will do that. I'll have a chat w/the warden.

I'm sorry you're having a slow day. That can only mean tomorrow will be better, right? My headaches a 7 right now & I'm getting ready to go see the doc. I'm going to discuss to Topamax progress & (btw I raise the dose to 75mgs today) & talk to him about getting a TENS unit.
I also want to ask him to up my Welbutrion cuz I've been really snippy w/my family on the Top...especially my poor husband. (He's put me on a really low dose of that prior to surgery. I don't even know if it does anything but I'm willing to try in the name of sweetness.)
(And speaking of out for that cake :D )

Better run....
Talk to you soon.

Bless your day,
Jackie :wave:

JackieH 06-03-2006 04:25 AM

Re: Calling all Topamax Users (topiramate)
Hi Angela,
in case I don't get a chance, I just want to say I'll be praying for you on Monday that your ESI goes well & that the medicine coats those hurting nerves like a healing balm. Close your eyes on the table & imagine yourself laying on a beach in Maui. :cool:

My doc was very sympathetic today, upped the Welbutrin(happy pills) & gave me an Rx for some pain suppositories (which my pharmacy was out of until Monday). He said all his other patients have quit the Top. before it has a chance to help them...too wimpy for the side effects I guess. :D Anyway, he said he knows I have a lot at stake & he sounded proud of me. It made me feel like I was making the right choice.
I'm up to 75 today. Ya know, I didn't tell worst s/e is probably that my lips are so sore & red they are almost blistering. Today I spent $20 on every kind of blistex & chapstick made.
My little sister is marrying a guy she was on a soap opera with a few years back. (She's an actress in Hollyweird.) I'm going to the wedding in 9 months...the very look that creeps me out the most, I might anorexic figure with lips that look like I had collegen injections!!! :rolleyes:
I don't even want to think about it.

Doc stands by statistics that after patients hit there theraputic dosage the s/e's begin to diminish over time to almost nothing. Here's hoping. :confused:

I hope you're able to have a pleasant weekend.
Rent a funny movie or 2 & get some good laughter endorphins going!

Bye for now,
Jackie :wave:

BrittleBones 06-03-2006 06:48 PM

Re: Calling all Topamax Users (topiramate)
Jackie - are the sore lips and cracked lips caused by the Topomax? I started taking Topomax 7 days ago with 25mg in the morning and 25mg in the evening. Today I went up to 50mg. in the morning and 50 mg in the p.m. So far today I've noticed that I'm wound up tighter than a clock! I feel like someone slipped me a pep pill. Also, can it be possible that the medication could be helping my pain after only 1 week? I ask this because today I feel a huge decrease in my pain level and that's taking into consideration that I'm being titrated down on my methadone. I didn't notice too much of a decrease in pain all of last week when I was on 50mg. per day; but today at 100 mg., it seems very different. I'm not having any "dumber than dirt" moments yet....although I'm sure they will come. The doc wants me to work up to 200mg per day within 4 weeks of starting the drug. The other side effect that I think is finally happening is the decrease in appetite and I couldn't be [email protected] :bouncing: :bouncing: The weight I put on while sitting in a wheelchair for almost a year waiting to get a new hip may finally start to come off!! I also noticed last week that I was seeing little black "floating" dots that would pass in front of my eyes. Nothing very severe - but they were definately there. They seem to have gone away now. Anyway - I hope your sores get better and that the Topomax improves your pain. All the best - KathyMac

JackieH 06-03-2006 08:12 PM

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

Congratulations! That's awesome!!! Your doctor has started you & raised you twice as fast as me & I think most, actually. But if you can take it & it's helped then, great. :D You may not need to keep going any higher. Why bother if you have the pain relief with the lower dose...unless it's only partial. If it's enough...then stick with the lowest dose possible.

I'm on my 15th day & just began 75mgs yesterday. My lips aren't really cracked or dry on the outside, it's almost like they are burning just beneath the surface. However, I am finding that blistex ointment is soothing them & am confident it will subside in time. I had this same side effect when I took Acutane for acne when I was 18, years ago. :confused:

I would ask your doc about your floaters/auras? Doesn't sound serious but you should talk to him about it. And I share your joy about the weight loss. I too gained weight from all the medical problems & it really adds to your sense of unwellness if you are used to being in shape. (Although I've been out of shape for almost 10 years now.)

I'm so happy for you guys that are getting pain relief from the Top.!!! It really gives me hope! :)

Take good care & keep posting,

JackieH :wave:

BlueSteam 06-03-2006 09:24 PM

Re: Calling all Topamax Users (topiramate)
Hi there, I do get tingly, burning feelings in my lips and sometimes my nose. I will say too, tho that I have been using Blistex like it's free. I honestly haven't noticed any pain relief from the topamax except what I get for the headaches---I will not complain about that!!! I've heard a lot of people say they have gotten a lot of other pain relief from it and I"m so glad KathyM is doing so well so far.

Jackie--I'm glad your dr visit went well--my dr also said most people don't give it a chance, I was also determined. I still have my moments. I'm glad you can take the wellbutrin!! My dr tried putting me on it and two weeks later I had a serious allergic reaction. I guess all the signs were there all along, but my dr kept thinking I would just get used to it. You should have seen my face, it swelled up like a basketball!! I had hives everywhere. I guess antidepressants work well with nerve meds for pain. Unfortunately I don't tolerate the antidepressants very well.
I'm sure you will look beautiful at the wedding and best of all have no headaches!! don't worry!!

I started having lightning like streaks in my vision a few weeks after starting the topamax. When I mentioned it to the pm he told me to see my eye dr. I just did the other day and he said my eyes are fine, and feels that it is a side effect of the med and was a little upset with my pm for not paying attention to all of the side effects of a med. I think it might be getting a little better. Jeez what next.
I hope you don't get too many new side effects with the new dose, just keep in mind that it will get better and remember to drink a lot of water. If nothing else I will be sure to write on Monday am before my esi. We will probably leave home around 12:30. I am really getting nervous, but I keep telling myself that it can't be worse than the mylogram. I did tolerate that real well.

Have a great weekend!! Angela

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