Topomax (medication merry go round)

Discussion in 'The Watercooler' started by GoingNorth, Nov 12, 2014.

  1. GoingNorth

    GoingNorth Crazy Cat Lady

    Well, after yet another case of weird, rare side-effects, I am weaning off of Trileptal. Had a very low serum sodium level and developed severe neurological signs.

    I am currently down to 600 mg of Trileptal and started 100 mg of Topomax today. So far, I feel weird. Spacy and out of it.

    Really weird thing I noticed is that I have NO appetite and my Caffeine Free Diet Pepsi, to which I'm addicted, tastes very strange.

    Keep your fingers crossed that the Topomax does the trick. I have Hashimoto's Thyroiditis and if the Topomax doesn't break the hypomania that hit when we cut the Trileptal back, we're going to have to go with Lithium, which will be a nightmare with the extant thyroiditis.

    This seems to be a pattern with me with psychiatric medications, both MS and APs. If I manage to get a good combo, I get a few years and then develop some or the other rare, dangerous side effect and have to change medications. As it sits right now, we are running out of mood stabilizers.

    Can't take Depakote because my liver decided it didn't like it. Can't take Trileptal and Tegretol because of hyponatremia. Lithium is contraindicated. Can't take any modern APs due to sever dystonia. Can't take Haldol due to dystonia. Currently on Loxapine and hoping that continues to work.

    Went off of Remeron due to the hypomania. Cut the Celexa back to 20mg. I am SO sick of this.

    I told my psychiatrist that if the Topomax doesn't work,I want to go into the psychiatric hospital, do a medication wash and start over again under close supervision.

    I'm just fed up with the whole thing.

    Anyone taking Topomax who has input, I'd appreciate hearing it. TIA.
  2. SuZir

    SuZir Well-Known Member

    I have no personal experience, but I have a good friend who is on Topamax for severe migraines (I don't know if dosage would be very different for that than for mood stabilizer.) According to her it is well known 'super model drug'; makes you thin and dumb. I can't say I would notice the 'dumber' effect on her, but she says that she sometimes does feel slower or that her memory isn't quite what it used to be. But she is very able to perform in her cognitively very challenging job, so I guess the actual effects are not too dramatic. Feeling slower and dumber-effect was worse first when she started the medication. She says it either subsided or she just got used to being dumb.

    Also the appetite effect has lessen for her a bit, but she did lose twenty pounds after starting to take the medication and those pounds have stayed away (she was in the higher part of normal weight when she started, now she is just around the lower limit of normal weight) and she still has to put some effort to make sure she eats enough and has all the nutrition she needs.

    She has been on Topamax for about two or three years now I think and for her it is worth the side effects due it really lessening the frequency of her migraine attacks.

    I hope it works for you!
  3. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Oh, GN, I feel for you. You don't know how much. As for Topomox I know ABOUT it, but haven't taken it. I believe it's a mood stablizer that is one of the few that actually induces WEIGHT LOSS! Yaaaaaaaaaaaaaaaaaaaaay!!! But, unfortunately, I don't know how it affects a person who takes it. Wish I could help more.

    I'm one of those people who has a mental illness that makes me non-functional without any medication so I tried for many years (until my mid-30's actually) to find something that would work. What would happen normally would be that it worked at first then became toxic. My body accumulated too much. I'd have to go off of it. It was so disappointing and discouraging.

    I finally found a medication combo that is sort of like that magic bullet you hear about. But this was years and years into trying. The other years I took less-than-adequate AD's that at least let me function in a half-arsed way.

    I know what you are going through. All I can say is, yes, I know it is discouraging, but if you need to be medicated then keep trying. New medications are coming around the bend all the time. I find certain types of therapy are gold as well. Cognitive Behavioral Therapy topped my hit parade until Dialectal Behavioral Therapy came along and it bumped Cognitive down to #2. If you can't afford it there are two ways you can still get stellar treatment. You can use the internet and get wonderful therapy sessions (one way, of course) from YouTube by the best psychiatrists that you and I could never afford. Or you can go to the library or to Amazon and read, read, read. Both of these therapies changed my outlook on life and may help you too! I am going to attach a few links so you can browse and see if you would be interested. Hugs from one person in The Frozen Tundra to another ;) You can get better, but, jeez, it takes so much work. And luck. behavior therapy (For Cognitive Behavioral Therapy) behavior therapy mood disorders (Note: This is one of my favorite books on earth) (This is a self-help site for Dialectal Behavioral Therapy. I think it's da bomb!!!!)

    Maybe some of this therapy, even if you administer it to yourself, can help you while you go through this medication merry-go-round.
  4. Calamity Jane

    Calamity Jane Well-Known Member

    HI GN,

    Topomax is one of the ingredients in a new, FDA approved weight loss drug called Qsemia. So I can understand how your appetite would be affected on Topomax. One of the warnings on the Qsemia is not to get pregnant while taking the drug, because it will cause birth defects.
  5. GoingNorth

    GoingNorth Crazy Cat Lady

    CJ, If I turn up pregnant, you'd better be looking for a new star in the East, LOL!

    I'm diabetic, and I swear the only reason I know to eat is that my blood sugar tanks., speaking of which...
  6. Calamity Jane

    Calamity Jane Well-Known Member

    GN, you are hilarious! At least you haven't lost your sense of humor!

    Seriously, though, I hope this new medication works for you. 100mg seems like a fairly big dose. You deserve to be comfortable after all you've been through..
  7. GoingNorth

    GoingNorth Crazy Cat Lady

    CJ, if one doesn't laugh, one cries. I prefer to laugh if at all possible.

    MWM, I was in DBT until my therapist left County a few months ago. I will check out the DIY DBT link you sent me, though after years of DBT, I DYI quite a bit anyways.

    I found that I had to be adequately medicated before therapy helped, but therapy is a necessity along with medications for me. Having been BiPolar (BP) since I was a teen and not being diagnosed and treated until I was in my 40s had led to a lot of maladaptive coping mechanisms.
  8. dstc_99

    dstc_99 Well-Known Member

    Topamax was originally invented for depression but was then used for migraines once they realized it helped that. Now they have combined it with one of the original ingredients of phen/fen. I'm not sure which and they call is Qsemia (I guess I didn't check that fact). So now it is a part of a diet pill.

    The major side effects that people complain about are tingling, a little bit of spaciness, weight loss, and it makes carbonated drinks taste funny.

    I took it years ago for depression without much help but they are putting me back on it now for migraines. I start low and then add pills until I reach the max dose. I don't know the strength yet since I start tomorrow but the plan is to increase up to two twice a day. Before I hated it because I couldn't drink my diet coke which was a severe addiction. Now I don't drink soda anymore so I am hoping it won't be an issue.
  9. cubsgirl

    cubsgirl Well-Known Member


    Topamax made Diet Pepsi (which I'm addicted to) taste awful. I didn't get the weight loss on it either. My fingers, toes, hands and feet felt tingly. I'm BiPolar (BP) too, overall, it didn't do much for my mood so I moved on to other things, but I have some friends who swear by it.

    I hope it works for you.
  10. GoingNorth

    GoingNorth Crazy Cat Lady

    So far I'm not getting the tingly side-effect. It has killed my appetite completely and I am having to eat on schedule to keep my sugar up. I haven't had a bad headache since I started taking it. Haven't noticed an effect on moods yet, but am told that'll take a bit.

    Have noticed that my Diet Caffeine Free Pepsi tastes strange. Still drinkable, but I've cut way back on it, which isn't a bad thing.

    I do feel very spacy, though am hoping that will ease up as I get used to the medication. If not, I'll have to go off of it as right now I feel "drugged" and I don't like that. I'll give it a couple
  11. dstc_99

    dstc_99 Well-Known Member

    I got busy this week and didn't start mine. Monday will be my day. We wi have to keep each other up to date.
  12. GoingNorth

    GoingNorth Crazy Cat Lady

    Be careful driving for the first couple of days. It didn't make me groggy, but it made me awfully spacey. That's easing off, but for the first couple of days I wound up taking a cab for my absolutely necessary errands.

    Between the heavy snow we had on the roads and the morons who'd forgotten how to drive in it, I just didn't feel comfortable driving. It seems to be starting to help with the migraines as the high pressure moving in should've given me one, but is doing nothing for the muscle tension headaches.

    I tried FIoricet for those, but all it did was knock me out for a couple of hours. Nothing like being stoned and STILL having a headache. Blech!
  13. dstc_99

    dstc_99 Well-Known Member

    Yep. That's what fioricet does for me too.

    Lord help me if i get the spacey driving thing. I notoriously have my auto pilot turned on and go to the wrong places. I'm not a bad driver I just tend to be thinking about other things and forget I need to pick up a kid and instead drive home. Lol
  14. GoingNorth

    GoingNorth Crazy Cat Lady

    Better to forget to pick up a kid than to forget to drop one off.

    Yeah, Fioricet is supposed to be really great for tension headaches and I was really excited to try it.

    I was very upset when Midrin was taken off the market as it worked fabulously for both migraines and tension headaches. Take two capsules, lay down in a dark room for a couple of hours, nap, wake up, and presto, no headache, no nausea, and you felt great.

    Never figured out why Midrin was pulled. I took it for years without problems. I can't take Imitrex or related drugs because it lowers the seizure threshold as do some of the other medications I'm on. Plus, I get more than 9 headaches a month and you're limited to 9 doses.

    So far, in my case, The Topomax seems to be helping with the hypomania, so I'm happy. Still need medications to sleep, but that's normal for me and has been for years.

    At least I'm no longer bouncing off the walls wanting to rip someone's lips off.
  15. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I love hypomania ;)

    I hope you have good luck with the Topomax. Interesting to see that it IS used for weight loss.
  16. GoingNorth

    GoingNorth Crazy Cat Lady

    MWM, I get NASTY when I'm hypomanic. Very short-fused, can't concentrate, can't sit still, no patience, can't sleep, just a very unpleasant way to be. It's also a short tumble into true mania for me from hypomania and once I go manic,all bets are off.

    I do NOT like the feeling, and once I go manic, I usually crash and burn into an ugly depression a short while afterwards.

    The Topomax is breaking the hypomania, which is a good thing. I slept some last night and tonight and will be going back to bed shortly. I routinely wake up about 5:30AM and go back to sleep around 7. Wake up around 11 or so.

    Have done so for years and it works for me.
  17. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Ah, ok. I just feel really good and energized. I have never had a fully manic episode and for that I am grateful.

    It's different for everyone. I hope the medications help you.
  18. GoingNorth

    GoingNorth Crazy Cat Lady

    DSTC, How is the Topomax working for you? It seems to have knocked out my migraines but not the tension headaches, which is a lot better than nothing in my book. Killed my appetite, so I think any diet pill with it in it would be effective so long as one made an effort to eat balanced meals.

    Most importantly, it has knocked the hypomania and I am sleeping again! I know it's not the most effective mood stabilizer out there, but it seems to be working for me. Seems to be a good medication for me.

    Pls update and let me know how it's working for you.
  19. dstc_99

    dstc_99 Well-Known Member

    Well the doctor forgot to enter the prescription in the computer so no medications yet.

    I out in a call so now I am just waiting for a reply.
  20. GoingNorth

    GoingNorth Crazy Cat Lady

    Your doctor needs a good kick in the postereior, or maybe a migraine or her own. Ugh!