Care for some Good News?!

Medication 💊 Anticonvulsants
1

Guys,

I’ve been taking Topamax for a little while and am having good results. I realize that others have had good results with ACs in the beginning, only to have them poop out on them, but i don’t want to go down that road at the moment :slight_smile:

This is my fourth drug and each one has effected me, positively, slightly differently. Before Topamax, I would have said that Klonopin had out-performed them all, but Topamax just beat it out.

Zoloft got me out of bed. Neurontin calmed my body down (that Zoloft clenching, ugh!) and let me sleep. Klonopin got me out of the house walking, and let me sleep even more. Topamax has made me feel steadier than I’ve felt in going on 6 years. I’m still rocking, but it’s trivial compared to the last year or so. So I’m even more functional. I haven’t tested the motion intolerance yet, that will tell a lot. Doesn’t matter, for now, I’m thrilled with feeling some real relief, for however long it lasts. And, of course, i’m only taking 1/4 of a 25 mg tablet, so the SEs, so far have been minimal and fleeting.

Even given my contraindications, i’m glad i opted for Topamax next, instead of Effexor, which is still an option. It’s always good to have options.

I haven’t been this hopeful in years. I’m going to hang onto the hope, but i’ll let you know if things fizzle.

Julie

2

EEEEEEHAAAAAAAAAAAAAAAAAAAAAW good for you! :smiley:

3

Hey Julie,

Great news! Now that I am off Cipramil you’ve got me thinking I should try this one again. How long did it take before you saw an improvement on it? Any initial nasty side-effects?

Can I ask if anxiety has been a major problem you’ve also been dealing with along side the vertigo/migraine troubles?

Best … Scott

4

Julie-

Thats Fantastic!!!

Its great to hear some good news about something that mostly gets a bad wrap. It just may be, the people having success with it are too caught up to report their successes!!! Good for you for even trying it!!! I know that was a big step!!!

Thanks, because obviously, like every other med, its not for everyone, but its good to hear someone have some success with it!!!
Keep it up girl!!! :lol:

Kim

5

That’s great news Julie, of what little information I’ve read about Topamax, there’s arguments for and against. I think you just have to make your very own personal decision and go with it and obviously, so far, so good - you go girl!

We’re all little guinea pigs arent’ we? :stuck_out_tongue:
cheers, Judy - and much good health! :stuck_out_tongue:

6

Thanks for your enthusiastic replies - gave me a smile this morning :slight_smile:

It was the first med i’ve taken that i’ve had any dramatic effect from (well except for the Zoloft hallucinations :slight_smile:

It takes 2 hours to reach peak blood level and 4 days to reach steady state. So the first couple of days, nothing. The third day, right at 2 hours, i felt kind of foggy and a little dumb about doing simple things, no big deal though, nothing to freak about. But at the same time, i felt less dizzy. The SEs lasted about 4 hours, but the steadiness has continued. The fourth day, no SEs, just continued steadiness (not improved, just the same)…since i knew it reached steady state at 4 days, and i saw nothing happening, i decided at the end of day 5 to increase my dosage. If you read the PI sheet, and crazymeds.us, you’ll find that dosing topamax is flexible. you can take it once a day or bid. So i took a second dose last night and feel the same so far this morning. No SEs, no increase in steadiness, just the same. So I’ll stay on this dose for at least four days and if i dont’ get additional improvement I’ll go up another 1/4 tablet, and so on. My doctor, of course, told me to take 25 mg and just stay there until I saw him in june (right!) I’m drinking a lot of water, because it’s hard on your kidneys and kidneys stones are not uncommon. I’m also going to ask if there is anything you can do to avoid the potential for metabolic acidosis. The really good thing about the course of meds I’ve taken is that by going with Neurontin first I lost my fear for ACs. I was really afraid of even taking Neurontin - i took it and shook. but with that under my belt, i felt real game for Topamax, once I saw that it was time. (I needed to get 6 weeks of Synthroid in me to see what that would do, didn’t want to muddy the waters)

Scotsman - yes, i was a panicker when I was young, spent years in therapy with good result. when the rocking first hit about six years ago the other thing i noticed was a return of my panic - after 30 years of feeling fine. i figured there must be a connection, just couldn’t figure it out. When I had my biggest crash it was due to an OD from a homeopathic remedy which put me into a Major Depression which coexists with severe panic. So, yes, during my worst days of this i was in a major depression, severe panic and extreme dizziness - virtually bedridden. The Zoloft helped the depression and anxiety a lot and so did the Klonopin.

So who knows, at increased doses i may get more SEs, i don’t even mind if I do, as long as i get more steadiness. i’ll keep you guys posted on what happens. I don’t mind being a gineau pig :slight_smile:

Julie

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Julie,

So glad to hear you are making some progress with Topamax. Julie…what does SE stand for? So your equilibrium and steadiness has improved? What about Motion…is that decreasing too? I have always been a somewhat anxious guy…all my life…runs in the family. I don’t get depression but tend to worry and dwell on things too much when things go wrong. I have gotten better with this as i’m getting older. But initially (1992) when the vertigo began the doc diagnosed me with “Panic Disorder”. I have a bit of a panic personality but at the same time i’m a survivor…:slight_smile:

Julie…since you have been taking Topamax…do you find that your appetitie is less + food does not taste as good? I heard this from another dizzy person taking topamax that she is less hungry and even lost weight.

Wishing you the best!

Joe

8

Hey Joe,

SE = side effects

I haven’t had any taste disturbances yet, but i’m only taking 12.5 mg. I expect that I’ll get more SEs as/if I increase. Appetite is the same so far also.

Depression and anxiety are two sides of the same coin. When I started Zoloft, not only did my depression lift, but I quit worrying about things (relatively speaking, and to the extent that you can quit worrying while virtually bedridden and housebound :slight_smile:

ALL the symptoms improved - all the motion, the unsteadiness - I just felt a stillness come over me, not total, but in every way. I would say the only thing it didn’t take away is the tension feeling in the head - not sure about that yet. But the rest was so dramatic and obvious, i didn’t need to wonder or think about it - it all just went away, at least 50%, with 1/4 of a pill.

I’m only about a week in so anything can happen, and i’ll keep you all posted.

Julie

9

Julie,

Thanks for sharing your experience. It is encouraging to hear that Topamax has the potential to help. I’ve been on Verapamil for three months with improvement in the vertigo and associated nausea, but not much else. I just got back from my Neurologist’s office. I asked about trying Topamax and he readily agreed. He said it has been a wonder drug for some of his patients. He also said most of them tolerated it well despite all the warnings about side effects. The only thing I’m skeptical about is he told me to start at 50mg each night for a week and then jump right up to 50mg twice a day. I’m planning to start much slower than that. Out comes the pill cutter.

I’ll keep you posted regarding my experience with it. I hope you’ll do the same.

I wish you continued success!

Marci

10

good luck Marci!

I never ever ever take the prescribed dose. I tell docs how sensitive i am and they never believe me. With this last guy, i told him i was hallucinating on 1/4 of a 25 mg Zoloft, he couldn’t believe it, he made me tell him what color the pill was - he thought maybe the pharmacy had given me the wrong dose :slight_smile: He believes me now, and said with Topa, okay, we need to go slow with you, so start with 25 and just stay there for a month - ha! out came the pill cutter! i’ll tell him what happened when I see him in June. It’s a good thing we have minds of our own.

I always start small and go slow, you can’t go wrong that way.

11

Marci,
I’m encouraged to hear that you think Verapamil has done you some good. I’ve been on it for 10 days now (120 mg) and they tell me that’s not enough time time see an effect. What dosage are you on and how long did it take to work? Also, how much improvement did you get (ie 20%, 60%, etc.).

Thanks

Chaz

12

FWIW, Hain does say it takes two weeks, but i don’t know if that’s once you get to your target dose, or once you begin your titration. That would be a good question to ask him, if anybody here is a patient of his.

13

Hi Julie,

So you’re only on Topamax at the moment correct? And anxiety is under control presently? I’m interested because of a paper I came across recently called:

[size=150]Migraine–anxiety related dizziness (MARD): a new disorder?[/size]
J Neurol Neurosurg Psychiatry. 2005 Jan;76(1):1-8
Furman JM, Balaban CD, Jacob RG, Marcus DA.

Full story here: http://www.mvertigo.org/forum/viewtopic.php?f=2&t=457

It essentially recognises a “triad”: migraine, a balance disorder, and anxiety – all three intersect with one another. Depending on which is the most prominent – either migraine or anxiety – can help in choosing the best meds for a person’s situation.

So far an SSRI has been my best option because anxiety was (and still can be) a nightmare with this for me. But I’ve never really had success with anything that worked on the migraine piece. It would be interesting if Topamax alone took out all three for you.

Best … Scott 8)

14

Scott,

This is by far the most interesting article to me, personally and I am passing it on to my family members. I am from a large family so there is a lot of data (11 sibs, 30 nieces and nephews). Panic, migraine, balance.

My sister, whose is a huge panicker, and whose daughter has just become a Hain patient, says her kids torment her by standing in front of her and swaying back and forth - it makes her dizzy. She gets dizzy if she sees out of the corner of her eye, someone flicking a pen. She has migraine aura and middle of the night spins.

I’m the first one to get this sick, but I sure do hope that the rest of them learn from what I’ve been through. At least I know that I’m helping my niece out by getting her straight to Hain instead of making a bunch of pit-stops along the way.

As far as I go, you got me thinking about it again, it was so strange that my panic was returning and there was no reason. it was at the same time i was starting to feel this little rocking - nothing that even worried me, i thought it was just allergies, or postviral. little did i know what was to come.

As for meds, the combo of Zoloft and Klonopin didn’t do it all for me. Maybe Effexor and Klonopin would have, but i’ve taken the Topamax plunge. I decided on Topa next instead of Effexor partly because I didn’t want to stop my Zoloft - it really saved me from a major depression and I know that the second time you go on an antidepressant it doesn’t always work. I didn’t want to take that chance. But if Topa doesn’t do it for me, going off Zoloft and on to Effexor is another option. I’m with you, the fewer the meds, the better. If you can find the right med that you’re not contraindicated for - lots of ifs.

Thanks again for that post.

Julie

15

Hey Julie,

I apoligize if you are having to repeat yourself on some of these questions regarding Topamax.

How long have you been on it?

How much are you currently taking…and what is your ideal goal as far as a daily dose is concerned? Did you stop taking your previous med’s and only on Topamax now?

Joe

16

Hi Julie,

We’re in a very similar situation you know. I should probably write out my full story in the sticky. But, in a nutshell, I’ve had problems with tension-type headaches and head fog since 1997 (migraine essentially). It would come and go and of course I had no idea what that cause was. Then I got hit with VN in Aug 2003. With the VN came an almost instantaneous panic disorder. I had never had trouble with anxiety in my life until VN. Sporadic depression started occurring after the panic attacks because the pendulum would swing the other way from a freaked out state to what felt like complete annihilation. The VN completed the vestibular disorder and anxiety parts of this “triad” and then I spent another 3.5 years trying to work out why I was not “compensating” from the dizziness and also wondering why an SSRI was making me well again. When I’d drop the SSRI it would all return.

I’ve ONLY just freed myself from Cipramil (2 weeks yesterday) – my crutch now for over 4 years. But I have replaced it with a Swiss brand of St John’s Wort called Remotiv which has been used in clinical trials and was more effective than Paxil without the side effects. Cipramil killed my libido, caused endless aches and pains, and I battled with weight gain (I went from a stable and fit 78 kg to 90 kg in about 6 months … I was horrified. I’m now back to 78 kg luckily). By contrast, SJW does not cause any noticeable SEs and is definitely keeping my spirits way up and sleep rock solid. But over the last week I have become very motion intolerant. Just going out to a pub with friends last night and some lively conversation (note: no alcohol) has left me feeling ultra dizzy today. So Cipramil was putting the squeeze on something in my brain preventing motion problems from emerging.

I refuse to go back to Cipramil and very reluctant even to try Effexor. I just don’t want another SSRI if I can help it. So as of today, and because of your post, I am trying Topamax again. I was really surprised that you have felt a positive effect on such a low dose so that’s what I’m doing. My script is in 50 mg pills. I cut it up into 6 pieces and knocked one of those back about an hour ago. If Topamax can kill the balance and visual vertigo problems and SJW can keep the anxiety component shut down, I might just have found the solution!

I’ll keep you posted and am very keen to hear how you progress too! Glad you found the article useful. I think it’s a landmark paper!

Cheers … Scott 8)

17

— Begin quote from “Chaz”

Marci,
I’m encouraged to hear that you think Verapamil has done you some good. I’ve been on it for 10 days now (120 mg) and they tell me that’s not enough time time see an effect. What dosage are you on and how long did it take to work? Also, how much improvement did you get (ie 20%, 60%, etc.).

Thanks

Chaz

— End quote

Chaz,

I’ve been on 120 mg. at night for three months. My neurologist hasn’t wanted to increase it. I’m not sure why, but my GP figures it was because he was afraid to lower my blood pressure too much. I tried adding a second dose in the morning on my own last week since I know this is still a fairly low dose. I stopped the second dose after five days because it was making my headaches worse and not really adding any new benefit. It is hard to say how quickly it began to work because I gave up caffeine and other dietary triggers at the same time as starting Verapamil. Caffeine is a major trigger for me. :frowning:

I have been dealing with 24/7 symptoms since October 2007. I started Verapamil and the migraine diet in February after my diagnosis. I believe the combination of the two is responsible for a 75% improvement in the vertigo and associated nausea. Along with that, I would say my fatigue, concentration, memory, verbal communication and other motion problems have improved approximately 50%. The remainder of my symptoms (visual snow, tinnitus, photophobia, phonophobia, tingling in face and hands, headaches, etc.) have not had any improvement. That is why I’m adding Topamax. My doctor wants me to stay on the Verapamil too for now.

Bottom line: For me the Verapamil was helpful but not a cure all, so I am ready to try other medications. I’m really hopeful the Topamax will help. Both my neurologist and my GP think it is a good next step for me.

I’ll keep you posted. Good luck!

Marci

18

Marci,

Glad to hear the Verapamil has been some help too you. I have also been on the same medication and it has helped with the Tension that i feel daily in my head but has not helped as much with Motion. But the one tab of Xanex daily helps to keep me stationary with less motion. I’m undecided if i’m going to stay on this med or in the future try something else?? Taking it one day at a time.

Joe

19

Julie and Scott, thanks so much, this gives us all hope!
If one med doesn’t work, then try another.

P.s Scott,
Could I send this article to the MDds forum, I’m sure they would appreciate it?
There are a few that aren’t happy with their diagnosis.
And could use all the help they can get.
Thanks so much
Jen

20

— Begin quote from “scotsman9”

Hi Julie,

So you’re only on Topamax at the moment correct? And anxiety is under control presently? I’m interested because of a paper I came across recently called:

[size=150]Migraine–anxiety related dizziness (MARD): a new disorder?[/size]

— End quote

Hmm, that paper looks very interesting (as does this thread, by the way :slight_smile: