Hmmm, I think itās a bit more complex than that and not good to make that a general tenet because of the general health implications of staying on medication long term.
At the risk of getting off topic, if you can get off the meds, you should, if you canāt for the time being, so be it. Your goal should always be to get off the meds ultimately though if at all possible. It just might be you have to take it extremely slowly, and every time you titrate down you are changing the playing field for the brain so you should expect some symptoms. Getting symptoms is not necessarily a signal to pile back on the meds, you might just need to persevere. However thatās a judgement call for you and your doctor.
(All this probably depends on what the underlying aetiology really is, but sometimes that will never be known so you just have to go with med response and how you progress)
You can definitely get to a place where youāre not being affected by it - although there remains the possibility it will come back sporadically or chronically.
My mother has regular textbook migraines. Sometimes she doesnāt have any for a year, sometimes 7 in a week.
I still had symptoms 7 days a week including significant imbalance and the odd neurological escalation after giving up meds but the symptoms continued to wane until most of them disappeared. I simply soldiered on.
It was a balance of benefits thing. I got really fed up with a couple of the effects of the medication, so that was the real immediate incentive to get off them.
The only thing that would have made me go back on would have been disruption to work. Luckily I could work and use screens by that point (med free). Imbalance and the odd fog was not impacting my ability to live and support myself.
Ultimately you simply know if itās easing up. Yours started to so there is no reason it wonāt continue to improve. Thereās no reason why it should stop improving, right? It takes years though rather than months.
In any case I hope you get to that place. Good luck. It all still sounds very positive to me.
Most of the time now I have forgotten I was so unwell with this awful condition. To all intents and purposes Iām back to normal. If and When it comes back itās a drag but not a disasterā¦ which is fine. I can deal with it.
Did Dr S advise you to quit the Pizotifen first, before the Candesartan? I assume you are still taking that?
Agreed. Much the same as I always say I coped with the occasional although severe ie totally incapacitating but episodic attacks. It was when they were no longer self contained but turned into constant 24/7 symptoms that normal life became impossible.
Itās great that you felt ready to try giving the meds up. Nobody would want to be on drugs long-term unnecessarily. I guess you will need to come down off them at the much slower rate you subsequently suggested. @janb seemed to come off very carefully but she did come off. Of course she was only on them a much shorter time and I suspect that could also have an influence. Itās good to know you managed to obtain virtually 100% control on them. That I understand to give the best chance of the longest remission I remember Dr Silver writing somewhere.
Quick update, especially for those thinking about meds and diagnoses.
I am still 99.9% symptom free and have been for a while
I occasionally feel a bit odd when thereās thunder brewing. The rest of the time, I feel great.
Iām still taking pizotifen 2.5mg daily, and when I cut the pizotifen dose the symptoms start to creep back in, so Iām staying on the meds for now.
Aside from taking the meds, Iāve pretty much forgotten the awful days and months and two bad years before getting this under control.
This is interesting for two reasons:
1: it gives a very strong indication it is actually migraine, as it is controlled by migraine-specific medication
2: it pretty much proves that pizotifen works, at least for me.
3: you can get better from this! Even though Iām still on the meds, Iām effectively in full remission and have been for 18 months or longer.
Im back to everything I did before - perhaps if I was an airline pilot I might think twice, but everything else, from skiing to rollercoasters to mountain biking to surfing is fine. Even working at a computer all day is fine (though I use a flicker free screen when I can).
I have atherosclerosis and take meds for it. Am I cured? No, since the existing damage is incurable, but yes, my atherosclerosis is under control, and my heart is getting sufficient blood flow.
Will I ever ditch the meds? Not likely. Being cured to me means symptom free, which it sounds like you are almost there. Take the win and celebrate it.
What does odd mean?
I took Gabapentin and became the most hateful person I knew. I even said hateful things to my pastor. God bless him, he is such a good man. He didnāt say a word or act as if anything was wrong.
As I would say the hateful things, I would hear what I was saying and be struck with surprise about what I was saying, but I couldnāt stop myself.
I think I was on gabapentin three weeks and stopped on my own. I hated who I had become.
That is a great success story Gidlabu! Do you have side effects on Pizotifen? I am on it as well, but I was so fatigued that I had to reduce them, I was on 4 x 0.5 mg, I am now on 3 x 0.5 mg.
Excellent news. Iām on pizo and also have achieved 95% for a while now. Itās great. Iām on for another 2 years. I do wonder what would happen if I decreased. Well done
My neurologist said that Cyproheptadine is very similar to Pizotifen, and available here in the US. I tried it for a few weeks, but stopped early in favor of a different drug choice. It made me pretty drowsy, but otherwise no issues.
Great to hear from you and that youāve got it all under control. So all that success is attributed to Pizotifen then? You dumped the Candesartan? Yes?.
Interesting that even 2.5 years on Pizotifen the troubles return once you drop back the dose so the system hasnāt done a full reset obviously like @janb was lucky enough to achieve. Yours is presumably much more intractable.
