Confused,depressed,worried,angry - this drug trial is over..

Medication 💊 Anticonvulsants
1

Hi guys,
I’ve been on what must be the longest Topamax drug trial in history - starting in Oct 2010 - a year and 4 months ago - can hardly believe it myself! This damn drug has fought me every step of the way, with side effects, etc - I guess we just haven’t seen eye to eye. As a result, I tritrated very, very slowly, sometimes having to retreat back down to a previous dosage and then increase more slowly in order to reach a target. Also, because I know that many people don’t get their fix until spending 3 months or so at a particular dosage, I have tried to find the minimum possible dosage that might work (for example Rich2008 got his fix after 3 months at only 50mg - a story that inspired me to try all this). That’s what’s taken so long - spending 3 months at 50mg…no that hasn’t worked…increase to 60mg…wait 3 months…etc…etc.

At 50mg, things seemed ‘acceptable’ - my neck-ache had gone by now, which was great, but the dizziness was still there 24/7, albeit stable and ‘benign’ (in that I wasn’t having too many ‘attempted mini spin attacks’ or sudden feelings that I might spin-out or fall over). But things slipped back after a visit to Disneyland Paris with the family, and never seemed to recover, plus ‘stable’ wasn’t really the fix I was after anyway. So I continued on my journey…

And so, I reached 100mg, about 9 weeks ago. And I know this is a dosage that many people get a fix at, after 3 months or so (like maryalice and others). And after just 2 weeks at 100mg, I had some positive signs - a few days with a really clear head - it was beautiful: fog free, not heavy like it usually is, and the dizziness was a little less as well. Then the usual foggy-head and baseline 24/7 dizziness returned - never mind, continue on…then after about 7 weeks or so at 100mg, things all started to go pear-shaped. I started experiencing mild headaches, neck-ache again, an increased general level of dizziness, but worse of all - lots of sudden ‘attacks’ - quite severe, where I felt that I might spin, or fall over, accompanied by massive surges of panic and anxiety. Despite this, I thought I’d fight on, to the 3 month point (which would be on 22 March). But each day just seemed to get ever worse - I almost fell over in the office the other day, after trying to walk back to my desk from the water cooler - a work colleague came to my aid. I stood there for a while, unable to move, feeling like I would fall if I so much as took a step - and since then things have just gotten worse…

So now I feel I cannot continue on. All this, and I don’t think I can make the ‘magical’ 100mg/3-month mark - seems like an oasis in the desert, that I’m just not destined to reach. The question (and it’s one that worries me) now is: are these extra sypmtoms that I’ve never really had this bad before really a result of the Topamax at 100mg building up in my system, as I first suspected? Or has my MAV after all this time (3 1/4 years now) started to morph into a more sinister form…? I know that MAV is a sinister, malleable beast - always suspectible to change, etc. But, my lifestyle in all other respects is as stable as can be - work, home life, stress, diet, exercise, etc…

One things for sure - regretably, I can only know by retreating back from this ‘desert oasis’ I’ve been trying to reach (100mg for at least 3 months). Last night, I took only 40mg, and will take another 40mg today, for a total of only 80mg (the dosage I was on before I jumped to 100mg). If the MAV monster returns to a less severe form, then I will conclude that the Topamax can indeed worsen migraine activity!! If the MAV doesn’t return to the ‘milder’ form I experienced before the sh*t hit the fan…well, that’s something I really don’t want to consider at the moment.

What do you guys think - can Topamax (or any drug) taken at a dosage that your system doesn’t ‘agree with’ actually worsen migraine activity?

Your depressingly,
Tony.

2

Hello,

Yes, I think a drug that doesn’t agree with you, or an increase in a drug could certainly make your symptoms worse. I’m no doctor but working from memory I think docs talk about a sweet spot which people hit that manages their symptoms, so I’m assuming less doesn’t work and more doesn’t work either. I tried countless drugs before hitting the right one, including topamax. I only stuck with the topamax for a number of weeks. I was pretty symptomatic when I first took it, so was unclear what was the drug and what was me. Then I came off it and felt a whole lot better so realised it had been making me feel worse. I know people who have gone up on a drug they are already taking and it has made them worse. In fact I take propranolol for MAV and do ok at 80mg but can’t go any higher as side effects become more profound and I started to experience some weird stuff that may or may not have been migraine related.

H

3

What does your doctor think? What else have you tried? I am so sorry this did not work for you. I am at the beginning of this trial and feeling the same frustration but hoping for success. I see a balance disorder specialist for the first time next week and a headache specialist in two months. I ditched my old neurologist because I think he is clueless. What type of doctor are you seeing? Is it time for a new approach? What works for one person does not necessarily work for everyone. Keep trying.

4

Hi Hannah,
thanks for the reply - I think you’re right, as regards the ‘sweet spot’ - that’s what I was hoping to find with the Topamax trial. I know some people say (like Rockysmom, if I remember correctly?) that it’s possible to tell quite quickly if a drug suits you or not, like the right key fitting into the right lock. Wish I hadn’t battled with Topamax for so long now, but as my Dad says, everyone’s a genius in hindsight! Thanks again for taking the time to reply. :slight_smile:

Hi furrykidmom,
again, thanks for replying. I’ve recently started seeing a new, highly respected consultant, and I believe that he wouldn’t have chosen to put me on Topamax anyway (it’s just that since I was already on it, he told me to stick with it, and he also added some Gabapentin). He commented that he would see me off the Topamax in the future, anyway, so in that sense all I’ve done is speed things up for him! :wink:
In the early days I tried Pizotifen, and had amazing success with it (just like the ‘key and lock’ idea mentioned above - it just clicked). After just 3 weeks the 24/7 relentess dizziness was virtually gone, but unfortunately I had a heart-arrythmia issue and was taken off the drug as a precaution (it wasn’t anything to do with the Pizotifen, but was instead just my heart - it had gone into atrial fibrilation once before, but the consultants took me off it as a precaution). When I returned to the Pizotifen months later, it just didn’t have the same magical effect - it still worked, but perhaps around 65 - 70%, not the 95+% that I had previously. Even now, I still plan to return to the drug, if all else fails! Thanks for your words of encouragement - I will keep trying - I’m just a little battle-weary, that’s all - I just need to take a step back from the front-line for a while, and rest and recuperate, before going again! :wink:
Thanks again, and best wishes,
Tony.

5

I feel for you so greatly. these trials are so long and then it’s terribly disheartening when they do not work. after my DUKE experience, it did strike me that perhaps you could have low CSF pressure and Topamax further lowered the pressure making you even sicker.
best of luck to you. I’m so sorry, again.

6

just saw your latest post. sorry didn’t read that first. I am sorry about ultimate pizotifen experience. I do think that if you got better once you will again on something. I truly do. Just wondering do you live in US? I see so many with success on pizotifen but believe it’s not given in US.

7

So sorry that the Topomax did not work for you. There are many more meds to try - good luck with your next trial. You turned it off once, you can do it again!

About pizotifen for those in the USA - I am in the USA and wanted to try pizotifen so my doc agreed and gave me a prescription. I got it filled online via a Canadian pharmacy who had it shipped from England. It took about 2 weeks to arrive and that was during the holiday season.

It was actually easy to take - made me tired, some appetite increase during the first week but nothing really bad.

Unfortunately, I had a rare side effect of it making my heart beat too fast so had to stop it after only 3 weeks. It is an antihistamine and I get this from those meds - even benadryl!

But, to anyone in the USA, if you want to try this medicine, you can get it. Oh, insurance didn’t cover it - cost was $44.00 for a 3 month supply.

Julie

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Oh Tony I am so sorry you had to go through all this with the topamax. You were so hopeful. I was so sad to see you sign off with depressingly. Hopefully as you titrate down on the topa you will feel less depressed and anxious. For now I am usually at about 70% most days and sadly feel this is good for me considering how bad I was this time last year. I too am waiting for that magic pill. I am glad you taking a step back for awhile as this will give you time to rethink your options. You are in my thoughts and prayers. Take care,

Karen

9

Oh Tony, I feel so bad for you. I was so hoping it was going to work. You certainly gave it a chance! Having a few bright days in there naturally got your hopes up. But you can’t go on feeling this bad.

And maybe you’ve heard this term, but it’s called a “drug holiday” when someone is between meds - it’s easy to understand why someone would want to take a break after an ordeal like you’ve been through.

As I type this, my husband is dealing with a migraine headache. Migraine just sucks!

But at least you’ve made your decision now, and that gives you some sense of control - you’re not in “waiting mode” any more. And you will then decide when you’re ready to try something else. I sure hope you get some relief by reducing your dose - please keep us posted, OK?

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Hi Tony,

Really sorry to hear this hasn’t worked out for you. But at least you know you definitely gave it your best shot. I definitely wouldn’t be hung up on trying to stick with it for 3 months + at the 100 mg dose. If you’ve got considerably worse again, I just cannot see how suddenly after a little bit more time it would make you feel better. Everyone is really individual and just because it worked for some people after taking it for longer, it doesn’t mean it would for you. Nine weeks is a really good trial of it, in my opinion.

The problem with having had a few ‘good’ days is that you just can’t know if there was something about the topamax at that point that was helping you, or whether it was just a coincidence, i.e. if you were taking nothing, over the course of a year would you occasionally have a few days where you felt rather better? Even for people like me, whom the piz seemed to help, I don’t really know if it did, or whether my bad spell of MAV was just time limited and I’d have got better if I’d taken nothing.

Regarding the piz, maybe if you went back on it after such a long break you may just find it works better again for you? Or else, have you considered taking something else with it? I took a low dose of propranolol as well.

Anyway I am really sorry to hear you are so much worse, but hope you can soon find something that works better for you.

11

Hi all,
thanks you so much for the replies - it means a lot that people take the time out to do so, especially when I’m ‘in the trenches’ so to speak.

MAVLisa - thank you for your kind words - I live in the UK, just outside of London. I think you’re right - Pizotifen is not given in the US. I’ve certainly always thought about returning to it, if all else fails!

Julie - so sorry to hear that the Pizotifen had a rare side effect for you - that was really unlucky! Thanks for the words of encouragement, and for posting the Pizotifen info for everyone.

Karen - thank you so much for your words of empathy. I’m really sorry to hear that you too are still waiting for that magic pill. I think you might be right, as regards stepping back for a while - it feels like leaving a battle-field after a constant fight lasting 16 months! I feel pretty exhausted, mentally and physically, and it feels strange to actually, finally give up hope on something you previously had high hopes for, for so long. I so, so hope that you one day find your ‘magic pill’!

Maryalice - thank you. The ‘drug holiday’ sounds like a strange concept, after all this time - I’d almost be frigthened to try and discover what the ‘vanilla’ (drug-free) me is really like! Actually, I won’t be drug-free, because my consultant also has me on Gabapentin. He didn’t choose to put me on the Topamax, as I was already on that before I hooked up with him (which was just recently). So, I’ll speak to him, and see where we go from here. I hope your husband’s migraine headache has improved!

Hi beechleaf - thanks for the kind words, and the sensible words of advice! In retrospect, perhaps I did hang in there too long, not just at 100mg, but when fighting the side effects at lower dosages. MAV is so strange - on the surface, we are all the same - we all eat, sleep, breathe, etc. But, at the complex, biological, MAV level, we must be so, so different - as you say, people react so differently to these drugs. I still look back so fondly on the Pizotifen - I can’t help but wish I’d never come off it the first time around - and still have the burning question - why didn’t it work as well the second time…? Even so, I’m still tempted to give it a third trial! Hope you are well.

Thanks again everyone, for all the replies. Thank goodness for this site and my MAV ‘family’ - when times are bad, I feel like it’s my ‘tether’, and that without it, I’d go floating off into an annonymous, frightening, lonely MAV abyss of some kind. So thank you all, for being my ‘tether’!! :smiley:

Best wishes,
Tony.

12

Tony,
First, I’m so heavy hearted for you…I know too well the frustrating feelings that come from finding the right med and then poof! It stops…or it makes things worse. etc…but anyway, I know some people have good results after a very long trial and titration with Top, but I still believe that IDEALLY, the right med will fit fairly fast with minimal side effects. That is my experience, and also that of my doctor.
Anyway, what about trialing Prothiaden? Or Periactin? And if I"m not mistaken, you can take them with the Gabapentin…of course check with the chemist first…
thanks for sharing…best of luck for an easy withdrawal from Top, and focus forward with high hopes for quick relief.
Hugs,
Kelley

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Hi Kelley,
thanks so much for taking the time to reply, and for the words of empathy. Your knowledge and input to this forum are invaluable. I always remember you saying that the right med should ideally feel like a key fitting into the right lock, and if I’m honest, Topamax certainly has never felt like that! I’ve made a note of the Prothiaden and Periactin (is this the one that’s similar to Pizotifen?). That’s what’s so great about your input Kelley - I can go into my next meeting with the neurotologist, feeling ‘armed’ with some information and a possible game-plan. Without people like you contributing to a forum like this, I’d be going into the next meeting ‘blind’, as it were.

I’m hoping to speak with the neuro on Monday (he’s currently on holiday). I’m unsure what he’ll say, since he wasn’t the one who put me on the Topamax initially. Will he want me to stick at 80mg, whilst we up the Gabapentin (he has a fairly steep Gabapentin titration schedule in mind - from 600 > 900mg for 4 weeks; if nothing, move to 1200 for 2 weeks; if nothing, move to 1500, then 1800mg!)? So perhaps he’ll want me to stick at a lower dose of the Topamax rather than completely come off it - I’m not sure. But certainly, my first step is to retreat back to 80mg - it’s been 3 days now, and I guess it’s too early to tell - migraine activity still seems elevated, but perhaps, tentatively, not as severe as at 100mg. The frequency and severity of the ‘I’m about to fall over’ and ‘I’m about to spin’ epsodes seem less, so fingers crossed!

Thanks again Kelley - take care,
Tony.