My dr has just added Topamax to my arsenal of drugs :evil: But I still have some trouble with driving. It has improved with the fex, but my dr is looking for me to be back to nirvana!!! I could get by with life with just the fex, but if I can get to 95%~100%, I’m certainly going to try.
Anyway, I currently take fex in the morning as it wires me. And I take a Tylenol pm at night to help with my sleep. But I don’t want to take the Tylenol pm AND the topomax at night and be totally knocked out. I have a 4 year old and don’t need to be sedated. But if topomax helps my sleep, I would be soooo happy.
Any thoughts and/or suggestions? I’m not going to start the topomax for another week because i just moved and need all the energy in the world to finish my old home before new owners move and I also have a new home full of boxes to unpack.
During my trial of Topamax I was told to take it at night - so I did… It made me have to get up and pee in the middle of the night (every night!) and then I was very groggy/sleepy/out-of-it during the day. (Two of the many reason I gave up on it…)
That said, these meds all seem to affect folks differently. There’s no telling if it’ll affect you similarly or not till you give it a go. (I’d say hold off on the Tylenol PM when you first start the Topamax to see what happens…)
Can I ask how long you trailed it for? That’s why I’m holding off on starting it. As I can’t afford to be groggy right now. If it indeed makes me groggy during the day, I will quit. I am finally feeling better and more energetic. Ugh.
I was on it for 6 weeks. Just couldn’t hack it (gave me a chronic eye twitch, made my thinking really fuzzy, I was chronically fatigued, and had middle of the night potty runs - fun times). And I had started realllly low, working up to 25 mg and just couldn’t get past that dosage… (The first two weeks on the really low dosage I didn’t notice anything terrible. It all hit when I upped the dosage after 2 weeks and then never improved. It was so bad I was having a really hard time driving and functioning at work.)
He likely is having you take it at night because it can be really hard to get used to the medication. It took me about 5 days to get used to it, and then about 5 days again to adjust every time I changed dosages. It would make me very dizzy and fuzzy headed, especially on days 2 and 3 after changing dosages, with things getting better on day 4 and being back to normal on day 6.
The good news is that eventually the Topamax really really worked for me. I was improved after a month and after 3 months of being on it I would describe myself as being basically 100%, so it can absolutely be worth it. However it is a difficult medication to adjust to so you have to be aware that it will likely make you feel worse before it makes you feel better. You have to go into it prepared for difficulties during the ramp up period.
He likely is having you take it at night because it can be really hard to get used to the medication. It took me about 5 days to get used to it, and then about 5 days again to adjust every time I changed dosages. It would make me very dizzy and fuzzy headed, especially on days 2 and 3 after changing dosages, with things getting better on day 4 and being back to normal on day 6.
The good news is that eventually the Topamax really really worked for me. I was improved after a month and after 3 months of being on it I would describe myself as being basically 100%, so it can absolutely be worth it. However it is a difficult medication to adjust to so you have to be aware that it will likely make you feel worse before it makes you feel better. You have to go into it prepared for difficulties during the ramp up period.
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Thanks Jamie for the heads up on what to expect. I’m feeling so good right now, I’m not sure what feeling like crap is going to do to my mental and emotional state of mind. I know physically I can take it, but I just recently started feeling great after being nearly bed ridden for the past year. I just have this gut feeling that topomax is going to give me that final push to 100%. To be honest, I haven’t even read about possible side effects.
Anyway thanks again for all the great info. It certainly gives me hope.
I’ve been following your story and wish you the very best of luck. Your story about your improvements on effexor give me hope, something I desperately need. what dose is Dr. Fife starting you on for topamax and what is his target dose? do you recall what dose you started to see improvements on with Effexor? and, yes, I do believe topamax can make you groggy and start taking it in the evening and eventually some take it AM and PM
best of luck to you!!!
Lisa
I was on 25mg for a month, and it helped me sleep but didn’t cause any fatigue during the day. I’m not sure if a higher
dose will or not. Thats just what I experienced. Kayera
I’ve been following your story and wish you the very best of luck. Your story about your improvements on effexor give me hope, something I desperately need. what dose is Dr. Fife starting you on for topamax and what is his target dose? do you recall what dose you started to see improvements on with Effexor? and, yes, I do believe topamax can make you groggy and start taking it in the evening and eventually some take it AM and PM
best of luck to you!!!
Lisa
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Hi Lisa,
I too have been following your story and think about you all the time. I can so relate to many of the posts you wrote and was at my very worst when I read your post about wanting to give up and I cried for and with you. your story has always inspired me because I just couldn’t comprehend how you went thru a pregnancy with this illness. My son is 4 and it was sooo difficult but a newborn would be close to impossible. You must have a lot of inner strength.
Anyway, I started out with 37.5 on the Effexor generic. At that time, I was at my worst with this. I did have some crappy side effects for the first maybe 10 days, but not too bad. I upped it to 75mg after that and really started feeling some small improvement at that time. But than my dr added verapamil and I started to go downhill again. So I went off that and upped the Effexor to 112.5mg. Again, I started feeling better but only probably about 60%. Than about 4-5 weeks ago my dr upped it to 150mg. And I am much much better. It felt like a very slow process but I sometimes am in shock that I’m doing as good as I am. I was soo hopeless and never felt so depressed in my life. I just kept making myself believe that eventually something will work. And I have a doctor who is confident I’ll have my life back. So that has helped. He’s an expert in MAV. Also, early on I decided if I was going to beat this, I was going to have to be brave and try drugs and suffer through the side effects and give each drug a fair try. Prior to MAV, I was so med sensitive and so against drugs.
I am not at 100% but I feel like I am getting closer. I believe that the topomax is going to help my motion problem but only time will tell. I am a bit scared of it making me feel like crap again but I have to at least try.
How are you doing Lisa? Have you started any new drug? Please let me know. You are in my thoughts and prayers.
I was on 25mg for a month, and it helped me sleep but didn’t cause any fatigue during the day. I’m not sure if a higher
dose will or not. Thats just what I experienced. Kayera
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Thanks for the response Kayera. May I ask why you only took it for a month? We’re you taking anything else with it? I’m glad to hear it made you sleep good and not tired the next day. Crazy how these drugs all effect us so differently.
Thanks Jamie for the heads up on what to expect. I’m feeling so good right now, I’m not sure what feeling like crap is going to do to my mental and emotional state of mind. I know physically I can take it, but I just recently started feeling great after being nearly bed ridden for the past year. I just have this gut feeling that topomax is going to give me that final push to 100%. To be honest, I haven’t even read about possible side effects.
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Well, for me, the Topamax made me feel like I had trigged a massive migraine that just wouldn’t go away. As I said, it peaked in day 2/3 after starting/changing dosages and started top fade in day 4, and by day 6 I was back to normal, but that is a pretty significant stretch of time if you are trying to do anything big at work or anything. If your doc only has you going up to 25mg then maybe you only have to do it once, which isn’t too bad. I went up to 100mg 25mg at a time, so I had to do it 4 times which wasn’t fun.
Topamax can have serious side effects, but my doctor said he usually sees patiens present with problems right away if they are going to have them, so I guess it’s something where you either have big problems with it right out of the gate or you are pretty much fine with it. The biggest problem is an eye problem–you need to report ANY change in vision immediately–your doc will probably pull you off the Topamax and want to see you. There is a rare but very serious eye problem that Topamax can cause that you can’t mess around with.
Outside of the eye problem, there are some minor odd side effects I’ve seen. Carbonated beverages taste terrible. I get tingling in my hands and sometimes my feet at times. Usually in my hands when I’ve been using them for manual labor of some sort.
Good luck! Hopefully the Topamax will be the extra help you still need.
very kind of you to ask about me. Sorry I’ve been MIA. feeling way too depressed to write much, and it’s the same old with me will certainly write the second I do have something positive to say
Hi there! Haven’t posted in a long time…but have checked in from time to time… I have been on Topamax since December… Had a bit of a false start a few months prior as I had a bad reaction to the generic. Now I am taking the brand name Topamax which is expensive (about $150 a month with insurance ;( ) but I think it’s well worth it… I started at a very very low dose… 12.5 mg and titrated up very, very slowly… I usually stayed at a dose for three weeks before I would go up again. At a change of dose, even at that low a dose, I had a difficult time, but after a few days, things would settle down… I have been at 75 mg for about 3 months now and I am cautiously optimistic… I am a bit from “normal” whatever that is… But I have been able to fly to Mexico and California with my family and vacation, go out to dinner with my husband from time to time, etc… Still have some disequilibrium and driving is still a challenge…don’t do much driving as I live in the dc metro area and driving is a challenge as it is… But I will say that Topamax is the only drug that has given me any semblance of relief in many, many years… So I would definitely not be afraid to try it, but start at a low dosage and titrate slowly as we “MAVers” are med sensitive!! Good luck!!
Also… It was good to hear from MAVlisa although I am sad to read that you are still suffering so… You continue to be in my prayers… If Topamax is in the future for you, don’t be afraid to try it…and maybe try the brand…nit the generic…
MAVprincess…who is your dr? You say he is a MAV expert? Just curious? Continued good health and progress to you!!
Hi Mavprincess,
I took it for a short time because it made me crazy dizzy. I also could not go up on it, and coming off was a nightmare. Once I was off,
I felt so much better.
Dee- Appreciate your kind thoughts. I am so thrilled to hear you are improving and hope you continue to get better and better maybe with a higher dose. all the best to you. I know how long you struggled.
Lisa, I am so sorry that you are still living in MAV hell. I just feel so deeply for you. I know very well how disabling and debilitating it is. I am not sure what all you’ve tried but I remember that you have tried a lot. I know how scary taking drugs is and it certainly appears that the MAV brain gets so upset when we try anything new. And that makes it scary. I think I mentioned this before, but at some point I decided I was going to give every drug a fair amount of time and suffer through the nasty se’s. And that way, I would never wonder if that drug would’ve worked. It seems the worse MAV cases have the most side effects. I just know that eventually you will find the right drug. And I understand when you say it’s life or death because I understand fully what it was like to not be living. :twisted:
Have you tried Effexor in the past? If not ask your doctor about it. You never know what it can do for you. It’s weird how 4 weeks after I went up to 150 how great I feel. Ive read that at 150mg, it hits norepinephrine and I kind of always believed that’s what I needed. I can’t tell you for sure, but I believe that’s why I’m doing better.
Also if you decide to try topomax, when would you start. I have my pills but waiting another week to start because I’ve got a lot going on right now. Just moved and our house is in a diss array!! Maybe we can start close to one another.
What does your doctor say about why you are not better yet? I really am praying for your strength through this. I strongly feel you will get better. Just stick Out the se’s.
Hi Lisa, so, so sad to hear there’s been no improvement. I just don’t know what to say really, but simply wanted to touch base with you as you are so often in my thoughts. One day Lisa, one day… we’re all believing for you…
I haven’t asked my doc why I’m not better as I must have asked 100000 times these past years and there is no answer he can give. I truly believe I am not treatable. I have tried so many meds to therapeutic doses and 0 help. very scared about my future as cannot take this torture much longer (although no choice). Effexor is one med I didn’t try to therapeutic dose. I believe only got to 25. was not a true trial. I decided at that time that I wanted to stop drug trials and try to get pregnant with my first. I may try in the future but the thought of it not helping and having to get off scares me as I know withdrawal is awful on effexor, and no drug ever helps me. if it works,. though, then I would stay on it FOREVER! I had such trouble even getting off celexa. I’m trying to get off nortriptyline now. been on 20mg for 2 1/2 years. higher doses didn’t help and 20 was at least helping head pain a bit. but, I and doc want me off that and periactin before next trial. I got a liquid solution and am in the worst hell going down from only 20-19mg. after 5 years, my brain cannot take any change. it is crazy. maybe even the transition from capsule to liquid is too much for my brain, although it should be same exact thing. just drug diluted in liquid. I guess? very scared about my future. I appreciate the support very much!
Hi Lisa,
I am so sorry to hear you are not any better. I haven’t seen you on the forum so I was hoping that was because you were out living your life. Are you able to leave your house at all?
Your doctor sounds like he is still willing and wanting to try and help you which is more than many of my docs have offered me. I have to say that since I gave up on the prospect of meds and am trying to do more things I seem to be adapting a bit better. I know meds are not my answer as I have run the gamut of many meds in all the different classes. Getting on and off meds were nightmares for me as well and I have come to the conclusion that my brain is just not made for meds.
Does your doc keep pushing meds? Has he ever suggested you take a break and see if your brain can figure things out a bit?
I am so very sorry about your lack of improvement. Please keep us posted. We are all rooting for you!
Christine
will certainly write the second I do have something positive to say