I started back on Pizotifen last night and feel very drowsy today & shitty in general. In had 3 good days this week as I lowered Topamax, but Friday felt pretty rough. Today feel really HUNGOVER and achy in the head, combined with lots of tiredness.
I just hope that coming off Topamax wasnt a bad idea - I had been on for over 4 1/2 months, as I was still having bad days with no proper solution, but I would have random ‘better’ days.
Hope I’m not headed for a really rough patch, don’t feel fucnctional at all today! This illness sucks.
Its really hard to know whether you are making the right decision! Maybe I should have gone up to 100mg of Topa, but in the end you have to follow the docs advice. Pizotifen did ‘cure’ me first time round, so lets see if this roughness passes.
Hey Luke,
I am sorry to hear you are having such a rough go of things. Hopefully it is just a result of your body adjusting to all the new changes you are making.
I just saw my doc yesterday as I was up to 50 mg of topamax without much success so far and he told me to push it to 100 mg as this was the target dose in most. (He even said that if I saw some benefit I we might go even higher) I was wondering why your doc told you to bag the topamax at 50 mg considering it seems like you were having even more success than me so far with only 50 mg???
It was suggested that we could go up to 100mg, but both Hain and my neuro in London felt that I had been on for long enough, and another 50mg would prob not make that much difference, as it was unclear as to whether the med was actually giving me better days or not (could be totally random). That said, I could be all wrong.
If things get really bad again, and Pizotifen doesnt work again, I guess I will retry Topamax up to 100mg.
Generally, when a med has worked for me properly in the past, I kind of ‘know’ if its going to benefit me as I have incremental improvement (not some random good days) as the dosage is increased. Its all a bit flakey really, but I guess I can always go back to Topamax should this theory fail.
We will see - I’m praying for a Pizotifen style recovery that I had 3 years ago. Totally normal after a few months - unbelievable.
I was wondering how your Pizotifen introduction was going. I have taken 3 doses so far. My first was on Friday night and I woke up on Saturday feeling quite a bit better (able to drive, concentrate on a conversation). I must be the eternal optimist because I immediately thought I was cured! Then on Sunday I woke up feeling pretty good but went downhill at lunchtime. By mid afternoon I was as bad as Friday again. The emotional rollercoaster is a killer. And then a weird thing happenend - I improved as the afternoon wore on! That is not the usual pattern for me. I tend to wake up feeling the way I’ll feel for the rest of the day. Anwyay, today is Monday and I’m still feeling good. My dramatic turnaround is definitely due to the Sandomigran (pizotifen). It is too dramatic to be a coincidence. That said, I have a long way to go, but everthing’s relative and I’m just so glad of the improvement for now. I am also on 25mg of Amitriptyline. I’ve been at this dose for about 10 days now.
Scott - hope the flight went well. I have yet to hear from Hannah. I hope she’s not around because she’s feeling good. It’s been so long since we ‘spoke’ i’d just love to say hi!
I felt quite ‘hungover’, ‘tired’ with heightened symptoms over the weekend, but have woken up feeling slightly better today. I have only taken 3 doses of 0.5mg Pizotifen so far. I go up to 1mg after tommorrow, and then 1.5mg 5 days later.
I’m really pleased to hear you have gotten quite a bit better already, not sure whether the meds would work that fast though, or whether its just coincidence. The vagaries of this illness are such, that its so up & down. I hope you continue to get better.
For your reference, I took Pizotifen back in 06 and it seemed to get me to 100% ( I was around the 90% before taking it, not sure whether thats due to Citalopram I took for almost a year). Had a relapse in April 08, having been med free for 8 months, and Pizotifen didnt work that time round. 3rd time lucky!
Hi Luke
Yes, I’ve read your story about how Pizotifen really worked the first time you tried it. As you say, I hope it is third time lucky for you. I know that it isn’t supposed to work so quickly which is why I have been skeptical that my improvement is due to the Piz, but I was going nowhere (in terms of improvement) until I took it so I find it hard to believe that it’s not working for me already. I’m certainly not back to the state I was in (97%) before this recent set-back but the brain fog, jumping eyes, lack of focus etc etc is gone and I’m left with just a feeling of being off-balance and also really drained liked I’ve just been through hell and back (oh yes, I have :)) Just for comparison, my doc prescribed 0.5mg for 2 weeks before increasing to 1mg. Interesting huh? It must mean he thinks it could take that long for the full effect to be felt. Your doc obviously feels the benefits are felt sooner (which in my case right now, I agree with). I’m still only being cautiously optimistic that I’ll be enjoying a normal Christmas day with my little boys, but it does feel good to be optimistic after weeks of bordering depression. I’m holding thumbs for you Luke.
Jen
PS. When I find the time I’m going to write in the “my story” section. I’m new to the mvertigo board but an old member of the Dizziness Healthboards where I met Adam, Scott, Hannah and possibly others on here back in 2002/3. My battle with MAV started in Oct 2002. I can’t believe I’ve had this rubbish for so long but thankfully I’ve had good control (up until last month of course) with meds for the past year or so.