Hello out there in Topomax Land. I am currently up to 150 mg. of Topomax a day. I've been on this amount for about 3 days and am scheduled to go to 200 mg. in about 4 more days. I've noticed that suddenly I've got some slurring to my speech, especially when I try to combine certain letters like "s" and "l" as in sleep. There are other combinations of letters that give me trouble, but I'm having trouble remembering them....which is the other thing that is giving me trouble. But I was expecting that one - short term memory loss - know the word, just can't spit it out. I don't recall now, but did all of you guys tell me that this is something that I will get used to? I mean the slurring of the words? And, I'm having problems typing as well. Do you think I should call my doc and askk to just hold it at 150 mg. for awhile? I know that many of you thought my doc was tritrating up way to fast to begin with. Advice please. Thanks - KathyMac
Hi Kathy, I’ve been wondering how you are doing. Some of my problems were with slurring of words (although slurring was more on the rare side but it did happen), for me mixing the letters from two or more words I wanted to use together caused me trouble - for example I have 2 guys that work with me who I never see face to face, always talk to them on the phone at the same time. Their names are Erik and Jared, so very often in my work I need to refer to 'Erik and Jared' and what started coming out instead was Erik and 'Jarik' - which was quite histerical to my team mates, especially when I tried to say it the correct way and couldn't. Another example was with Home Depot (I guess Lowes was in my brain at the time) it would come out as - Dome Lepot. Very frustrating. Some other word problems I would experience was in my written work too and sometimes I would just draw a total blank as to how to spell a word I knew I used to know and other times the spell checker would pick up a small mistake like an ‘i’ for an ‘e’ but there were enough of them I knew they weren’t just keystroke errors, they were brain firing problems. Then I would loose words all together in speech and all I could do then was play charades to try to finish my statement - or other times it was the wrong word – similar sounding, like I would want to use the word ‘conference’ but ‘concert’ is all I could come up with at the time (I would know the word was the wrong one). I also had severe concentration problems. I had to go from 100mg down to 50mg and I still had problems at 50mg but less and was about ready to throw the towel in when I started to adjust and the problems seemed to clear up. I haven’t had any words issues that I can think of in 4 weeks and the concentration is almost a non-issue. I have just received the ok from my doc to go up to 75 and then 100 if I choose to see if it further helps my back pain and migraines as once I again I am becoming tolerate to the daily allotment of vicodin I take.
Yes, I still say you a going up fast, but this is the first trouble you are having and others have gone up just as fast or faster without issues. I think the problem with going up so fast though is this – it hasn’t really built up in your body yet and your brain hasn;t had a chance to deal with it – so you are now having a problem at 150mg but in reality it may be a much lower dose that is creating a problem for you and there is no way to know without going backwards. I would suggest that you gauge for yourself how these side effects are impacting your life and if you are willing to put up with them for a while. There is no permanent damage being done and what you are experiencing I believe is within the norm (although it must be mentioned to your doc). If they are too much, then you need to talk to your doc about either stopping now at 150 to see how things go and if that doesn't work, backing down. The thing to keep in mind with topa is that it can take both a while to work (at least one month at the correct therapeutic dose and it is said that most people will adjust to the cognitive side effects over time.) This is all from what I have read and a little from my own experience which of course yours will likely be somewhat different.
One more thing about the adjusting to the medication – when I first read this, I thought, this is nuts! – if this med is making me forget words or the wrong words and letters are coming out of my mouth, how am I going to adjust to that? Well, here is how: the drug works on your temporal lobe and changes brain chemistry and when you are first on it your brain doesn’t quite know what to make of it, so it makes some ‘mistakes’. Over time though, the brain will compensate, and relearn to do it correctly once it gets used to the new chemical environment (which is a slowed down message system). That was the laymans description of a long medical paper I read – but it makes sense to me. (It was on topa for 3 months before the cognitive side effects were a non-issue for me, 3 months!)
If you want some advice of how to deal with the potentially embarrassing elements of dealing with these effects for a while – go back and read the long, long, topamax post that we have been asked to stop adding to cause it slows things down – there are ideas there that might help you get through this stage this is an issue for you.
Just one more thing to add. I'm at 125mgs, as of yesterday & I can't tell you how much drinking a LOT of water, Crystal Lite, Gatorade etc... seems to clear the brain. You need to for preventing kidney stones anyway but it REALLY helps disipate the side effects. Somehow it seems to almost, sort of dilute the drug in your system, if that makes any sense. So drink LOTS of water...helps w/the weight loss also & just plain keeps ya healthier.
Angela, if you are there still, I went to my doctor this afternoon to talk about raising the dose more today is a matter of fact. Just came online to check my email but my server is down for my whole province & they don't know how long so I'm glad I can still talk to folks on the health boards!
I'm glad there's a new Topamax thread. We'll just have to keep it under 120 posts, eh everyone?
Yes - I agree about the fluids and reducing the side effects. I had the usual trouble continuing drinking soda and I switched to Propel which I love - 10 calories for 16 ozs but it is much better than water which I don't care for. You can get it cheap at Walmart.
KathyMac--I'm not understanding why your dr isn't allowing your body to adjust to the med. That has got to be very hard on you!! There really is no reason why you shouldn't be allowed to wait at least 5 to 10 days! I guess if I was you I would be drinking an awful lot of water!! I had major typing problems myself. I used to type 93wpm and for a while there, I couldn't even remember where some of the keys were. It is getting better.
The water thing as Jackie and I have discovered is 1/2 0z per pound of body weight. Ouch, I am floating.
DogMom--Hi, glad to hear from you!! You have really done your homework. I hope you are doing good?? How is the topamax working for you?
Jackie--Hi!! Prayers to your children today! I have a really bad headache today. About a 7. Honestly I'ts a toothache I am sure. We are two peas in a pod. I did write you a short note. I am sure your server will be up soon. They usually don't let things like that stay down too long. Happened here not too long ago. Construction misshap. My dr did tell me that once you are on a high dose of topa, then it will never work for you on a lower one. Yuk. That's why I am fighting for it to keep working for me at this 100mg dose. My appt. with pm isn't until the 23rd. I will check in with you later!! Glad to hear from you!!
Can you all tell me which ones of these water drinks doesn't have any flavors and just tastes like plain old water? Flavored water makes me sick to my stomach.
Take Care and have a pain and headache free day! Angela
Thanks everybody for your thoughtful and funny replies!! I plan on calling my doc on Monday and asking him if I can stay at the 150 mg. until I feel like my body is getting used to this dose before going up to 200 mg. Also, I want to ask him if I can hold my Methadone titration. I'm down to 40, 40, 40 per day and my pain has definately increased. Now, all of a sudden, my left hip is killing me. I really could have sworn that it was the beginning of another break (my right hip is the one that has the hip replacement), but my surgeon ordered a left hip xray and it didn't show any fractures. But I'm not sure about it. I think my right hip fracture started out as a hair-line fracture that didn't show up on an xray until I walked on it for 2 weeks and it became very obviously broken on xray. Anyway, I'm feeling really angry that my body is acting like this just when I'm up and out of my wheelchair and getting around so well on crutches and driving, etc. It could be just bursitis. I've had that in my left hip before. Back to the Topomax, I experienced the tingling and numbness in my feet for the first time yesterday morning when I got up. I was sitting in a chair and I felt like my feet were stuck with pins and needles. It went away after about 10 minutes and it hasn't happened again. But I was prepared after reading all your posts about that particular side effect. I sure hope I don't get banned for starting another Topomax thread!!! Thanks again you guys - You're the best!! KathyMac
Sorry to hear about the pain Kathy - what concerns me is that you know your body better than anyone else and if this is like before I understand why you are concerned. Take it easy and I sure hope nothing new is wrong with your hip now that you have come so far and things are finally looking up.
I see that you kind of wanted to conclude the post, but I was very curious to know if you figured out the headaches that you had when you first lowered to meth and started the topamax - did you figure it out - and more importantly did the headaches go away (I guess that really is secondary to the hip pain now). Just curious.
Now that you mention it.....yes, I guess they have gone away! I haven't had one in over a week. It probably had more to do with the methadone reduction than the Topomax increase. Maybe I'll never know. It's funny that I haven't thought about the headaches at all until you just mentioned them. Another sign of my short-term memory loss perhaps??? As for my left hip, it sort of feels like the bursitis that I had in the same hip over a year and 1/2 ago. I'm still going to call my surgeon back on Monday. I want to have whatever test I can have to rule out even a hairline fracture. Maybe I'm just being paranoid, but after the experience I had with my right hip fracture, I'll be paranoid thank you very much!!! Take care and thanks for your advice! KathyMac
Angela my dear friend, & all my other friends, too....
The drink that "just tastes like water & has no other flavor" is WATER!!! j/k
Actually, I feel like a sucker paying for it but I just love Dasani. It just tastes so pure & so like nothing. Tap water or even the water filtered from my fridge door often makes me feel nausious when I drink glasses at a time. I really enjoy Crystal lite w/a shot of Gatorade. I buy the powder Gatorade mixes...saves a TON of money & my fave by FAR is the Blue Ice flavor...it's the least kool-aid tasting & most refreshing.
Gotta get those electrolites..doc says.
kathy,you should be allowed to stay at this dose until you are actually feeling better with regards to the side effects,really.there is no real 'need" for your doc to have to push this,what happens if you dont,is the sky going to come crashing down upon your doc or something/ya know what I mean?you have 'time' all the time in the world to take this as slow as you have to.I would even consider going back down to the previous dose where you wer not slurring your speach and stay at THAT dose for a few more days and try the increase again.there is no reason for you to have to suffer this extent of side effects from any med.just take it as slow as you have to.
I am currently going thu this with lyrica.wow.i was fine with the starting dose of 50mgs,except the burning feet it caused initially that went away the next day.well when I was supposed to go up to the next pill so I would be taking my night one that I started on and then adding the morning one,well thats when things got a bit bizarre.
when I added the morning one,wow,I started having really icky eye problems(double vision in my horners syndrome eye and some loss of my peripheral vision) and was actually stumbling around the house like I was drunk or something,my balance and co ordination were just like gone for about three hours.it was horrible.but i kept taking it only because I was seeing for the first time,some really good results with any of the many anti siezure meds I had tried.it really IS working well.so i stuck out the three days with this.well when the forth day came(last fri) when i was supposed to actually add the third pill.i thought no way was i going to be able to handle THAT with this other crap going on so I just called my painclinic.
she told me to drop that second pill and stay on just the one at night til i see my NP on the 6th of july to really discuss it.he told me they didn't want to see me having to deal with these really extreme side efects when ther really was no reason to have to push it,ya know/soo I am back to the one.not seeing as good results with it but those really horrid side effects have stopped for now.I will just have to probably take more time for my body to adjust with this stuff.but I will continue it one way or another cuz for the first time,my central pain and my RSD pain and some of the actual RSD swelling(which nothing has touched in over two years since it actually started ballooning up on me)is actually finally being affected at least some and that is really huge for me right now since nothing has ever actually worked on my central pain before except the lido patches.but the lyrica is actually affecting my pain levels from the inside for the first time.really amazing for me,really.
I really would just either stay at that dose you are currently on til you really feel you have a much better handle on it or actually drop back on one pill and stay there for a few more days and then try adding that next pill and see what happens.and if your doc mentions to you that you just HAVE to keep adding to this nightmare while you are still trying to adjust to the last raise,just ask him why in the hell he has such a huge need to rush you thru something that is giving you such horrid side effects.i doubt he would be able to actually give you any real valid medical reason for this.and you will be much more comfortable.just take your time like i am.theres no medical reason that states this has to be done in a particular amount of time ya know?
i do hope things get much better for you.just remeber,its all up to you and how YOU feel about doing the next raise,K?take care Kathy and please let me know how things are going.Marcia
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
Kathymac--You might want to ask your dr, but topamax can cause muscle pain. My hips started killing me for a while after I went on the topa. I allready have athritis in my hips pretty bad and for about a month it got way worse. It has calmed down. All the same, get that checked out! One thing about that tingling that I noticed is that if I am in an air conditioned room or vehicle--watch out! It gets worse Angela
Kathy,i hope things are going better for you.just wanted to let you know that while i was checking out the huge range of side effects for lyrica(wow there IS a bunch of really bizarre ones there),i decided to give topamax a whirl too.you know,i really couldn't find anything listed as far as actual 'slurred speach' as an actual listed side effect of it at all.the closest thing was speech related disorders,but I got the impression that this ment more of a trouble with comming up with words type of thing but not actual slurred speach.so who knows.this could possibly be stemming from something else entirely,or it could just be the topamax.i just thought you might want to know this.i also found where they mentioned a possible increase in your hepatic enzymes as a side effect.they listed the SGPT/SGOT and the alkiline phosphatase.these are the main labs that the transplant center looks at when my son has his monthly labs done?
i am not listing this stuff to freak you out or anything but just to let you know about them incase you were not aware of these possibilities. i know one of the meds that my son has to take as a mood stabilizer for his bi polar III is depakote,and this can also be a bit harder on the liver too so he has to have his valproic acid levels checked along with his liver labs every month,since he already has to have his liver labs done once a month this is not a big deal for him.but it wouldn't hurt you to maybe while you are on this stuff to actually get your hepatic labs done like every six months or so just to be safe.i would just ask the Rxing doc about this.
I also found something rather interesting while reading about topamax(i know I am just bounding with topamax info today,sorry).it appears to actually have like some sort of a ceiling effect at around 400mgs.it stated that while some patients are on much higher doses up to like 800mgs there really is no actual clinical evidence that at doses higher than 400mgs that any patients really found any real added benefit from the higher doses.just an interesting tidbit.
i just thought you might like to know some of this stuff.
hope things are going okay today,Marcia
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
Kathymac, I have read the same thing that Feelbad has, the higher doses are stated to pretty much be reserved for seizure patients. I am really concerned about what your doc is doing. I still have plenty of my own questions about the med, but this one has been made pretty clear by both of my docs and all the reading I've done. My headaches have managed to come back, but not nearly as bad--a combo of the esi I had done a couple weeks ago and some dental problems, but I am hoping I don't have to go up on my dosage, we will see what my pm says on Fri. My doc also warned me that if I try to go off of the med and then chose to go back on it, I will have to take a higher dose for it to work. touchy stuff.
I really meant a drink with electrolytes in it--a plain one with no flavoring?? Everyone is so funny.
Also, what is the standard for having regular testing when a person is on the topamax? That is something I haven't found in all my reading. I will have to ask my pm on fri. I've only been on it for a little over two months now.
Hi Angela - Thanks for that bit of information!! I feel relieved knowing that my hip pain could very possibly be a result of the Topomax. You say it lasted about a month? It was on both sides, right? Mine is only on the left. I wonder if it could be the same thing.
Marcia - I get a weekly blood test for my H&H (hematacrit & hemogloben sp???) because I have severe anemia caused by autoimmune disease. Usually my numbers are very low and I give myself a shot every week of Procrit. I could ask my doc to order liver function tests as well, but I would need to ask her how often they should be checked. Do you know?
BlueStream - I sure hope that your headaches respond to the Topomax again. I've always said that I think I could live with any pain except migraine pain!! I can isolate most parts of my body - but how do you isolate your head? I've had maybe 5 real migraines in my life - the kind where just moving your head a half inch makes it throb so bad that it feels like it's going to fall off your body and the only thing that makes it feel better is if you throw up. Maybe that's not even a real migraine!!
Today is the day I go up to 200mg of Topomax. I spoke to the resident who is taking my PM's calls today and tomorrow - my PM is at a conference until Wednesday. He thinks I SHOULD go ahead and take the 200 mg. I've decided to wait until my doc gets back from his conference so I can talk to him. Thanks for all your great support and advice my friends!!! KathyMac