You never know vic, if youāve been on it for 18 months and largely had your symptoms under control then you may have broken the cycle and find you can come right down/off it. I certainly managed to do that last time with the Pizotifen after Iād been mostly symptom free for about 18 months. Did a slow wean off it and was largely well for a few years without needing prohpylactic meds. If your doc feels thereās a chance you might not need it then hey, go for it - would be a shame to be on something as toxic as topomax if you didnāt need it. Who knows, you could be drug free, what a dreamā¦ 
OK, so last night I started the long process of weaning off Prothiaden. Down from 150mg to 125mg. So far no change - so thatās no migraine symptoms (hurrah!) but also no change in willingness to pimp soul for carbs (sigh). But very early days. I wonāt post progress reports every day as that would be hideously boring for all of us but will check in with semi regular updates.
Vic
Hi Vic,
Good luck with it all - hopefully you can get to the magic dose that gives you migraine-free mojo. Iām still looking at my box of prothiaden - havenāt had the bottle to try any yet :lol:
Hereās an update of where Iām at on the Prothiaden Adventure.
I spent a month at 125mg, down from 150mg. I was a little wobbly but OK. Then about 10 days ago I went from 125mg to 100mg. Bad things started to happen. All of last week was rotten. The vertigo started coming back (floor falling out from under me), nausea, headache (unusual for me) and numbness combined with extreme senstivity to pain and also bone aching tiredness.
So, on Sunday night I went back up to 125mg and am back to being about 90% well. 125mg must be the magic dose for me.
I still want to get off it so will try and get in to see Halmagyi some time in the next decade.
Hope everyoneās doing well.
Vic
Hey Vic - thanks for the update I was only thinking about you the other night and wondering how it was going. Sorry the drop to 100 didnāt work out but great that it reversed so quickly once you upped the dose
I suppose itās too much to hope that the reduction of 25mg has made any difference on the mojo front?
I had to laugh at the Halmagyi comment - my mum rang the local neuro for an appointment last week and got one on 18th January. She is still speechless!!!
Hi Vic -
It can be so tough striking the right balance of symptom relief and side effects (good and bad)!!
Since dropping down to 100 mg Topamax, Iāve had enough headaches and mild dizziness back in my life that I decided to split the difference and see what happened - so I increased it to 150 mg recently (I havenāt gone back to doc yet - last time I saw him, for the increase from 100 to 200, he wrote a prescription that said to take 100 to 200 mg per day).
Iām happy to report that orgasms are still possible at the 150 mg dose.
But Iām afraid I havenāt been on it long enough to see much difference in terms of headaches and dizziness; itās still about at the same frequency as at 100 mg. Which is WAY better than I was before I started on Topamax: at that point, I was wondering if I was safe to drive a car since on occasion I had really severe dizzy spells, some accompanied by tunnel vision. But it may take a few weeks for the increase to start helping - I think bad side effects generally show up soon, while good therapeutic effects can take a lot longer.
Is there such a thing as asking to be put on a wait list for a cancellation for Halmagyi? Some doctorās offices in the U.S. will allow that - make an appointment for you way out in the future, but also put you on a wait list for the next cancellation slot that comes available.
Hi Gabrielle,
There has been a flutter, a distant rumour if you will, of mojo. If I squint hard enough I can see it in the distance but if I blink my eyes all I see is cake. As I was reading your post even I was eatingā¦cake. Dense, heavy apricot cake. So, not surprisingly, no decrease in either weight or appetite.
In terms of MAV though Prothiaden is clearly a wonder drug for me. Within 12 hours of going back up by 25mg things were soooooooo much better.
Cannot get through to Halmagyiās people. They donāt even answer now, thereās a talking robot listing instructions, none of which is how to make an appointment. I might try my other co-favourite GP and see if he knows enough about Topamax to see if I can do a gradual switch as coming off cold turkey is not going to work. Either that or I can jump on a plane to Melbourne to see Waterson as he appears able to see patients in mid January!I wonder if he could even see me last yearā¦
Hi Mary-Alice
I agree- finding the right dose is a balancing act. Initially I was doing well at 75mg and things started getting worse again so thatās when I went up to 150mg and things have been in a pretty good 90-95% holding pattern ever since. EXCEPT for the weight gain and mojo loss. What a choice eh?? Will try Halmagyiās office again - there is a wait list from memory - the challenge will be bypassing a machine and getting to talk to a real person.
Vic
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. Either that or I can jump on a plane to Melbourne to see Waterson as he appears able to see patients in mid January!I wonder if he could even see me last
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Iāll be annoyed if thatās the case as in early November when I called with my referral the earliest appointment I could get was 28th Feb at 12 noon The local guy I was referring to with mum is here where I live (near Albury-Wodonga)
Mmmmmmmmmmmm cake. I MISS CHOCOLATE CAKE
thanks, I just needed to get that out of my system :lol:
bummer about the mojo etc, but I suppose on the kinda plus side the prothiaden is helping?
Update on the Prothiaden reduction. Two nights ago I dropped down from 125mg to 100mg. Touch wood - so far so goodā¦ fingers crossed!
Vic
Hey Vic -
Some good news on the Topamax front for me: 150 mg HAS reduced both headaches and dizziness in frequency. And some of the dizzy spells at 100 mg were creeping up from mild into mild-moderate territory, and I had a brief 3 or 4 day run where spells were happening daily (never got back to the almost constant daily wobbliness that I had when I was on no Topamax). But now, Iām back to much more rare dizziness, and itās fleeting and mild when it comes.
I share this so it might give you some hope!
Hi MaryAlice,
Thanks so much for your Topamax update - I appreciate it. At this point Iām going to see how I go continuing to drop off the Prothiaden. Who knows - perhaps Iāll get lucky and be in remission and not need anything at all? If not Iād like to try introducing Topamax - Iāll have to try and get an appt with Halmagyi to sort this out - my GP isnāt comfortable having me on both at the same time and is also not very familiar with Topamax at all as a migraine prophylactic (gotta love an honest doctor!).
Vic
This is for Christine (cmoc),
Prothiaden has helped tremendously with my chronic migraine symptoms. I checked back to my āstoryā post from almost two years ago and Iād actually forgotten some of my symptoms since then. They were:
*My symptoms are as follows:
Vertigo (sense of falling, being on a boat)
Fatigue
Difficulty concentrating and with memory
Chest pain that feels like anxiety or even a heart attack or panic attack
Stomach upsets
Generally feeling very weird and out of it
Strange surges that feel like electric currents running through me
Unsteadiness and feel like Iām lurching when I walk
Intolerance of light and noise
*
It happened gradually (over several weeks) but I did see a lot of improvement with the Prothiaden. After a few months at 75mg symptoms (primarily the rocking/spongy floor feeling) started coming back so I went up to 150mg. But so did my weight! Thatās why Iām trying to gradually get off, or reduce. Currently doing pretty well at 100mg.
It does also help with sleep - not so much getting to sleep, but staying asleep. It does make it very difficult to get up in the morning and at various times (particularly when I was first on it) I would have visual hallucinations on waking - specifically - giant Daddy Long Legs spiders scuttling on the walls. But Iām not the only one - I think Jen (Brisbane) and someone else have had the same! Not scary - just weird.
Hope that helps Christine 
Vic
Hi Victoria,
Some of your symptoms sound sooooooooooo familar! Iām on amitrip. Is Prothiaden a tricylic? Iām only on 10 mg of amitrip wondering if I should up the dosage? What do you think?
Thanks Vic,
I was on prothiaden years ago, it is one of the few drugs I could tolerate and I got up to 150 mg, if I remember, it worked to start with and then sort of stopped, so I weaned off it quite quickly with no withdrawal side effects. I do remember it is the only time I wrote in my diary that my fatigue was helped. Maybe I wasnt on it long enough to put on the weight, also, all those years ago I never seemed to put on weight anyway, but I can nowadays if I am not careful so I will have to watch out for this.
Thanks
Christine
Just thought Iād update you guys on my attempt to wean off Prothiaden.
I am now on day two of 75mg. So far so good. Well, there have been some rocky moments but I am still definitely within managable territory. Still no weight loss but I have to say, Iām still craving carbs - perhaps I need to be completely off Prothiaden before that subsides. I have taken the bull by the horns however and cut out alcohol. If nothing else, I feel healthier for that. Promising developments on the mojo front. I was watching a doco about one of my favourite Australian bands, Six Ft Hick, and the singer just oozes PSE (potent sexual energy). I would walk over hot coals and broken glass to get to that manā¦ OK. Cold shower :lol:
Vic
Vic,
Well that sounds like the rumblings of a sleepy mojo waking from itās hibernation! Good on ya!!
Kelley
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Cold shower :lol: Vic
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oh ohā¦you could be dangerous if you get all your mojo back :lol:
ā Begin quote from ārockyksmomā
Vic,
Well that sounds like the rumblings of a sleepy mojo waking from itās hibernation! Good on ya!!
Kelley
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Thanks Kelley, Iām beginning to feel like a new woman! Actually, Iād prefer a new man, but you get my driftā¦ :lol:
ā Begin quote from ā~tina~ā
Vic congrats on the weaning process!
I too am on 75mg of Prothiaden and have the same issue that I have jsut stacked on the weight-about 8kg in the past year.
Do you mind if i ask, whatās the deal with youā¦with me itās almost as if I have to eat or I start feeling a bit off (if that makes any sense) I have always wondered if this was just me or if it was the meds!
Tina
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Hi Tina (and welcome!),
A few of us have had weight gain with Prothiaden. I think thereās a few issues. One is hunger - I feel hungry most of the time and seem to require A LOT of food before I feel satisfied. I know people bang on about will power but itās a tough call when youāre ravenous all the time. Another is I think it may actually mess with the metabolism a bit. Third is, like you, I feel bad if I donāt eat. I have hypoglycemia but the symptoms can be very very similar to the onset of a migraine - so, particularly pre meds and in my early days on Prothiaden (as it was slowly kicking in) Iād feel what I thought was hypoglycemia - jittery, disorientated, clammy and sweaty, shaky, confused etc - so Iād eat a bunch of carbs to try and kill it. In reality what I was feeling most of the time was migraine activity. On the other hand if I DO get hypoglycemic my migraine symptoms WILL ramp up. So itās a bloody confusing and self perpetuating cycle a lot of the time.
What I am doing now is the easy quick wins. Iāve cut out alcohol (donāt miss it). Iām upping the exercise. Iām trying to control the carb cravings and just not have the junk food in the house. So at least if I feel the overpowering urge to eat itās something healthy.
Hope that helps! If not, join our MAV/Prothiaden weight gain support group. We meet in bakeries and drink champagne. Itās a blast!
Vic
ā Begin quote from ālorcalonā
ā Begin quote from āVictoriaā
Cold shower :lol: Vic
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oh ohā¦you could be dangerous if you get all your mojo back :lol:
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Ha! Maybe I should carry a safety warning :lol: