I’ve posted a bit on this in other threads and am looking for thoughts and/or advice.
I’m on Prothiaden (a lot, 150mg) and get great results - about 90-95% wellness. The downside is I’ve put on about 6 kilos since I started on it 18mths ago and have lost my mojo. Those two side effects started within weeks of going on Prothiaden (which back then was a low dose - 25mg up to 75mg).
I don’t like being this weight and I want my mojo back! Any thoughts on another med I could try…? I suppose I could try will power and eat less but I feel hungry all the time and I’m not sure will power is going to cut it.
Do you think you need to be on that high of a dose? What about adding in a low dose welbutrin? Between lowering your Proth and adding the WElby, that is all I can think of that might help.
Vic - not really med related but have you been able to add any exercise into your daily/weekly mix? Although that does require a bit of extra willpower but not as much as avoiding eating . I do find my mood is much better if I can get to the gym or walk each day - I have a bit more zest for life that day. I can’t help you much on the med front I’m afraid as haven’t really tried anything else other than metoprolol.
I was told by a good psych doc friend of my Dad’s that, with these meds, the side effect profile is fairly linear – that is, the more you take, the greater the side effects, particularly with your mojo. There’s no question that when I was on 15 mg of Cip I had zero interest in sex. Zippo. Complete drone. At 10 mg I was awake again but probably about 7/10 which I could live with but still annoyed me.
As Kelley said, you could try throwing in some W although you’ll have to cough up about 80 bucks. Not covered in Australia for our needs. Also, W probably does nothing for MAV; however, it is known to give mojos a good jolt with some reports of spontaneous orgasm in the shopping aisles. LOL :lol:
it is known to give mojos a good jolt with some reports of spontaneous orgasm in the shopping aisles. LOL :lol:
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Far out! That would certainly make life more interesting but I’m not sure how, um, appropriate that would be! Perhaps this Welby and Valium should be in the water supply along with fluoride…? :lol:
Thanks guys for all your advice.
I do a fair amount of exercise already, so I’m not sure that’s going to make a difference. Also, guess what? Exercise makes me hungrier. Sigh.
I was originally on 75mg but had to go up to 150mg as my symptoms were creeping back in.
I guess I could try tapering down and then if Bad Things happen I could taper back up. I might also see if I can get an appointment with Halmagyi and see what he thinks. We did talk about Topamax once (my primary interest in it vs Prothiaden was for the weight issue - see, it’s been a problem since I started).
Vic – Topamax is used as a weight loss drug too as you might know. So if it works for you in the migraine department, you can kiss the lard goodbye. My brother’s wife is on it (150 mg daily for more conventional migraine). She was always a porker but not any more. Catwalk model thin minus the catwalk head. :lol:
Vic – Topamax is used as a weight loss drug too as you might know
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No, I didn’t know. I thought that was just a happy side effect. 'Nuff said. I’m sold. I’m heading to the doctor with a request for Topamax, Valium and the Welby stuff. Then I’ll be skinny, chilled out and spontaneously orgasmic. Woo hoo! Honestly, why don’t they put this stuff in the water along with fluoride? There’d NEVER be another war again.
Hey love, sorry to rain on your parade. Topamax may be good for the weight loss but really does make you feel like crap quite consistently. I’m a month in and the mojo is certainly rather lost (was thinking about putting an add in loot in case anyone had found it!) - not sure if it’s a direct effect of the drug, the fact the I’m still dizzy, or the feeling unwell from the hideous side effects of the drug - it’s virtually impossible to concentrate on anything sexual when the tingling in your feet is so much more intense than the tingling anywhere more pleasurable :roll:
So sadly, I personally can’t recommend Topamax for mojo recovery (unless things are about to miraculously change after the one month mark that is - always happy to hear good news!)
Maybe you could convince them to do a trial of this welby stuff for MAV, we might all still be dizzy, but christ, who’d care!!
If all else fails however, I would recommend investing in Durex tingle lube and a Wevibe. Minimal mojo (or motion) required…
Have to say this thread definitely made me laugh…I think my husband will be calling my doc for a Wellbutrin script for me!!! :lol:
But in all honesty, on the Topamax issue, started in June, down between 30-35lbs and still dropping, considering I had gained 65lbs during this how crazy process over 6 yrs a definite positive. Part of it is definitely also diet change to fit the Migraine diet. So yes it does help with that, side effects well some seem to taper off the longer your on it. Mojo, I honestly can’t say it’s effected better or worse by the drug BUT I will say that the loss of the wgt has improved my self image which then definitely helps the mojo department. Any positive with MAV is a good thing.
Thanks for your advice and sharing your Topamax experience. I’ve checked out the data base where there’s a whole lot of threads about Topamax. It does seem like quite a few people have problems with it but then I’m not sure how representative our group is. I think a lot of us find our way here when things are bad so we probably aren’t getting posts from people who get great results straight away. But the side effects sound pretty ordinary that’s for sure.
I seem to cope fairly well, in general, with meds. I don’t seem to be as sensitive as a lot of other migraineurs.
Anyway - my next step will be to book in with the doc and have a chat about it.
You’re absolutely right, these boards are of course heavily biased towards the people who are not finding it easy to get out of this illness - I know I spent very little time on them in the symptom free years I had and I’m sure that’s the general pattern for most people. I do also wonder whether you have an increased chance of success with a new drug when starting it from a position of good symptom control (as you seem to have) rather than starting it from a position of catastrophic relapse.
Would be just great if the medical community would pick this up and run a few proper randomised controlled trials on drugs for this illness. There is just nothing at all out there specific to continuous dizziness/vertigo to guide us re which drugs are proven to be most effective and at what doses. It all seems to come down to individual practitioner preference and they all seem to be at odds with one another which just gets so frustrating.
You sound like you have quite a lot of confidence in your physician which is a great position to be in. Let us know how you get on - the weight gain is a pig that I totally understand after two runs of Pizotifen!
Minor set back. I can’t get in to see Dr Halmagyi (neuro) until at least Feb 2011. So, I’m going to see one of my favourite GPs instead. No disrespect to her but her knowledge of migraine does not extend to the crazy chronic MAV world. BUT I think if I explain to her what I want to do and why she’ll give me 'scripts for what I need.
So, looking for advice please. Do I taper off the Prothiaden till I get to zero and then start the Topamax or can I reduce the Prothiaden while introducing the Topamax? Also, any thoughts on what sort of dosage of Topamax is required, what dose I should start at and a titration schedule?
I feel your pain Vic - I couldn’t get to see Waterston until the very last day of Feb!
When I started on topamax the neuro started me on 25mg per day with the aim of moving up to 50 after 2 weeks if I was tolerating it. By day 4 I felt so much worse - suicidal, like all the joy had been sucked right out of me, and like I was living in a washing machine (NOT a good day to have an MRI when noise is also a trigger :shock:
BTW I’m wondering if I now have a “prothiasman” to go with my “valisman” - since I got the scrip I’ve been having quite good days, and in the 2 days since having the script filled I’ve felt the best I have done in quite a long time head wise. No one said all I had to do was LOOK at the tablets to get results :lol: [yeah, right, like it would be that easy!]
Hey Cecilia, sorry - I forgot to thank you for your feedback. And great feedback it is too re the weightloss. Fingers crossed!
Gabrielle, I’m not worried about not being able to see Halmagyi till Feb - when I was REALLY sick and no-one knew what was wrong with me but they were starting to suspect MS (again) my co-favourite GP got me in to see Halmagyi THE NEXT DAY. And Halmagyi has seen me before when it was urgent with no appointment, between patients, the day after calling. If things keep working so well for you with Prothiasman then you may not even need to see Waterson?
Not sure about the compatability of Prothiaden and Topiramate I’m afraid so I personally can’t advise on that. I would recommend doing your research though and titrating the two together if possible as it will take you some time to reach a therapeutic dose of Topiramate - you really can’t rush this drug.
I think I made a mistake by weaning myself completely off pizotifen before starting topirimate which left me completely dizzy anyway from the illness, plus trying to deal with the extra side effects (including extra dizziness) from the Topomax. As you have good control with the Prothiaden I would stay on it until you have acheived a therapeutic dose with the topomax (assuming they’re compatible), there’s no point leaving yourself open to a relapse in symptoms.
In terms of a starting dose, everyone is different but 25mg once a day seems to be a standard starting dose. Having said that, it still made me a bit of a tearful emotional nauseaous headcase for a week (days 3-5 were probably the worst) and others on here seem to be reporting the same on that dose, so again, as you already have good symptom control on your current drugs why rock the boat?, you’re working, living your life, you’re in no rush, so I’d personally say start lower, maybe 12.5mg every day and increase by 12.5 mg day every 2-4 weeks as tolerated. (go to 12.5,mg twice per day, then 12.5mg morning and 25mg evening etc). Once you’re up to 50mg/day maybe start weaning down your current drugs every alternate fortnight and increase your topiramate dose if you need to every opposite fortnight.
If you’re getting this from your GP, there’s a good chance he may not know about the compatability either - may be worth contacting a pharmacist before your appointment so you can go armed with the facts.
Thanks for the reply. I saw my GP yesterday and we’re going to try getting my off Prothiaden, very, very slowly and see how that goes. She’s not too familiar with Topamax so didn’t feel comfortable about me going on it, especially while still on the Prothiaden. I’m cool with giving that a go - I can always bump the Prothiaden back up if I need to, but at this point I want it gone or at least reduced - it’s great that it works controlling my MAV but I’m sick of the side effects - I hate having the extra kilos (not even aesthetically, just the feel of it) and am sick of no mojo (not just libido, a general feeling of ‘coasting’).
The GP forgot to give me a new script for Valium so I’ll go back and get that - in my experience it’s a great short term MAV fix.
Must warn you about what I believe is a rare side effect of Topamax - while it has helped me drop weight and deal with the dizzies, I did experience a significant problem (in addition to a little word finding problem, which doesn’t bother me too much). I was having good symptom control at 100 mg, but then had to start having a small amount of estrogen applied locally “down south” for thinning skin due to perimenopause (had some skin tears, like papercuts - OUCH). Even that tiny amount got into my bloodstream and triggered some dizziness (hormone fluctuation being my primary trigger), though it was mild. Doc had me go up to 200 mg, at which point I couldn’t have an orgasm.
At which point I decided being a little dizzy wasn’t so bad.
So I’m back down to the 100 mg level. Have had a few breakthrough mild dizzy episodes, but none of the daily wobbliness I used to have, and no severe episodes. I’ve also had more headaches (though mine aren’t the killer migraine headaches that some people get - I can function, and I just take Advil for mine). Headaches much more rare at 200 mg. I’ll take the headaches.
As for titration, my doc went faster than some others: 25 mg for 2 weeks, then if that was OK I could go up 25 more for 2 weeks and so on until 100. Seems I recall that several people have started at 12.5.