Thank you Pizotifen - you've done it again (90%+)!

Success Stories & Positivity 🕊
1

Hi all,
at the risk of completely jinxing everything, I just thought I’d report that the Pizotifen appears to be doing it again for me. My 24/7 dizziness is sometimes barely noticeable lately (the past 2/3 weeks)!! :slight_smile:

For those that don’t know, I’ve had pretty much 24/7 disequilibrium/false motion/dizziness since Sep 2008. My one proper respite prior to this was when my GP put me on Pizotifen in the early days, and after 3 weeks or so at 1mg, I was able to forget about the dizziness. Then I was advised to come off it as a precautionary measure, due to an atrial fibrillation episode (it wasn’t the Pizotifen, just my heart doing what it’s prone to do). When I later returned to the Piz (after 3 months or so), it had lost its magic, for reasons I cannot explain (I was only at about 60% or so).

So, I struggled with Topamax for a long time (well over a year, I’d have to check), before eventually seeing Dr. S. He put me on Gabapentin, as well as the Topamax, and I had a brief respite and period of calmer MAV, before apparently over-doing it too soon (daring to start living again, and doing things in the evenings). So, when I couldn’t cover from the relapse, we dropped the Topamax and started the Pizotifen. And here I am!

I’m too MAV wise now to dare to hope that this will last forever - I will, however, guard against the trap of over-doing things too soon. Hopefully, I’ll just stay this way, keeping all variables as stable as possible, and see what happens a few months down the line. Fingers crossed!

Anyway, I wanted to post this just to give fellow strugglers some hope. It looks like my med is indeed Pizotifen (I’d wager I could come of the Gabapentin and probably still be OK, since I believe most if not all of the work is being done by the Piz). But…one step at a time…

Best wishes to all,
Tony.

2

That is wonderful tony!!! does the pitz help with walking? im glad you decided to go back to it!!! i would kill to try that med grrrrrrrrrrr stupid u.s.

3

Hi Sarah - it has just subdued the migraine activity to such an extent that I just feel ‘stiller’ if that makes sense (less disequilibrium and false motion, etc). When you are ‘stiller’ everything falls into place I guess, including walking! :slight_smile:

I’ve always wondered why the Piz isn’t approved in America (kinda worrying, perhaps…?). But for now, I’ll take whatever…! :wink:
Really hope better times are ahead for you…
Tony.

4

That’s brilliant news, long may it last! x

5

Hi Jem - thanks for your kind words - I just hope everyone on here can eventually find their fix…
When you look back, the journey seems sooooo long and difficult - what a sh*tty disease this is…
T.

6

that’s great news. So happy for you. I love reading success stories. Hope it lasts for a very long time :smiley:

7

Fantastic! That’s just great :slight_smile: long may it continue! X

8

Fantastic news! :smiley:

— Begin quote from ____

For those that don’t know, I’ve had pretty much 24/7 disequilibrium/false motion/dizziness since Sep 2008. My one proper respite prior to this was when my GP put me on Pizotifen in the early days, and after 3 weeks or so at 1mg, I was able to forget about the dizziness.

— End quote

A prime example of chronic VM. Glad it’s now manageable.

9

So pleased for you mate! I felt really hopeful it would work for you again. Brilliant news!

But what about our weekly moanfest? Still waiting for my piz miracle…will you still be my MAV best buddy?

Speak soon. Lots of love,

N x

10

Hi Tony,

That’s brilliant news :slight_smile: I’m so pleased it’s working for you again.

As you know, it’s also the drug that works best for me. Unfortunately it also makes me gain lots of weight, otherwise I would just take it all the time. I seem to remember that you’re one of the few lucky ones who doesn’t gain weight on it?

11

Wow! Congratulations, it brings a smile to my face and resparks the fire in my belly to keep soldiering on every time I hear a success story especially on pizotifen. I too started on pizotifen was feeling its benefit but then had to stop in fear it was causing another symptom, it wasn’t it. I’m back on the pizotifen and going to increase to 4 or 5 tablets under Dr Granot. I hope and pray with every fibre of my being that pizotifen is my magic med too.
I too haven’t gained any weight, I was rather looking forward to that side effect, as I could do with a few extra kg but, nadah.
Well done again, I hope to be joining you soon in the land where dizziness is a distant memory. I’m so happy for you.

12

Great news! I tried that med for a few months, and got up to 1.5mg but it didnt do anything to help. Dr S seems to use it occasionally, I think that its a great med for lots of people.

13

— Begin quote from “Kathy G”

that’s great news. So happy for you. I love reading success stories. Hope it lasts for a very long time :smiley:

— End quote

— Begin quote from “Anna31”

Fantastic! That’s just great :slight_smile: long may it continue! X

— End quote

— Begin quote from “scott”

Fantastic news! :smiley:
A prime example of chronic VM. Glad it’s now manageable.

— End quote

— Begin quote from “Nubs”

So pleased for you mate! I felt really hopeful it would work for you again. Brilliant news!
But what about our weekly moanfest? Still waiting for my piz miracle…will you still be my MAV best buddy?
Speak soon. Lots of love,
N x

— End quote

— Begin quote from “beechleaf”

Hi Tony,
That’s brilliant news :slight_smile: I’m so pleased it’s working for you again.
As you know, it’s also the drug that works best for me. Unfortunately it also makes me gain lots of weight, otherwise I would just take it all the time. I seem to remember that you’re one of the few lucky ones who doesn’t gain weight on it?

— End quote

— Begin quote from “Krystal”

Wow! Congratulations, it brings a smile to my face and resparks the fire in my belly to keep soldiering on every time I hear a success story especially on pizotifen. I too started on pizotifen was feeling its benefit but then had to stop in fear it was causing another symptom, it wasn’t it. I’m back on the pizotifen and going to increase to 4 or 5 tablets under Dr Granot. I hope and pray with every fibre of my being that pizotifen is my magic med too.
I too haven’t gained any weight, I was rather looking forward to that side effect, as I could do with a few extra kg but, nadah.
Well done again, I hope to be joining you soon in the land where dizziness is a distant memory. I’m so happy for you.

— End quote

— Begin quote from “ichbindarren”

Great news! I tried that med for a few months, and got up to 1.5mg but it didnt do anything to help. Dr S seems to use it occasionally, I think that its a great med for lots of people.

— End quote

Hi guys - just wanted to say thanks so much for the kind words and wishes. I’m trying to resist the negative thoughts about it perhaps losing its effectiveness, and wondering how long it will last, etc.
Anna, Kathy and Scott - thank you! :slight_smile:
Nubs - of course I’ll continue being your best MAV buddy - I promise! I so hope the Piz will come through for you - I’ve got everything crossed! And yes, the weekly moanfest can definitely continue! :wink:
Beechleaf - it’s been so long, hasn’t it? Going waaayyy back @ Dizzytimes. I know you decided to come off the Piz - have you found a suitable replacement - I was worried you were in a relapse last time I heard…?
Krystal - your Piz journey sounds similar to mine! I soooo hope it works for you, and I’m so glad that a success story like this can reignite the fight in you - just as other success stories did to me over the years. We all need to hear some good news, eh? Keep us updated…
Darren - thanks, and so sorry to hear the Piz didn’t work out for you. :frowning: I wish you all the best in your MAV journey.

I just hope the Piz effect can continue, and that I’m sensible enough to keep things stable in terms of lifestyle! Thanks again to everyone for your kind words and wishes…
Tony.

14

Hi Tony,

Try not to worry about the med stopping working- I know that is almost impossible to say with MAV- but just try to enjoy feeling good because you deserve it! How long were you on Pitz the first time? I wonder if your extended holiday from the drug may be why now it is working again??? It is a mysterious phenomenon with these drugs where they often dont work (or work as well) the 2nd time around…I have had that happen with lyrica and nortriptiline too.

15

Hi Tony, fantastic news that the Piz is working for you again.

Are you also sticking to the diet?

16

Awesome. Congrats to you.

17

— Begin quote from “sarahd”

Hi Tony,
Try not to worry about the med stopping working- I know that is almost impossible to say with MAV- but just try to enjoy feeling good because you deserve it! How long were you on Pitz the first time? I wonder if your extended holiday from the drug may be why now it is working again??? It is a mysterious phenomenon with these drugs where they often dont work (or work as well) the 2nd time around…I have had that happen with lyrica and nortriptiline too.

— End quote

Hi Sarah,
you’re right - I must try not to worry; it won’t help! :slight_smile:
I was on the Piz for only about 3 - 4 weeks before my atrial fibrillation episode. Then again for about 3 months before giving it up and moving onto Topamax. As for the ‘extended holiday getting it working again’ theory - that’s *exactly *what I was thinking - apparently MAV minds think alike! :wink:

18

Hi Richy and Joe - thanks for your best wishes. :slight_smile:
Richy, yes I’m still on the MAV diet, and have been for around 3 years - so long, in fact, that it’s just become a way of life, really! Every now and then I’ve eaten things I shouldn’t, but generally, not (still not eaten a banana for as long as I can remember, no red-wine, no MSG in all its forms, etc…)

19

— Begin quote from “TeeCee”

Hi Richy and Joe - thanks for your best wishes. :slight_smile:
Richy, yes I’m still on the MAV diet, and have been for around 3 years - so long, in fact, that it’s just become a way of life, really! Every now and then I’ve eaten things I shouldn’t, but generally, not (still not eaten a banana for as long as I can remember, no red-wine, no MSG in all its forms, etc…)

— End quote

How about beer Tony?

20

Over the past 4 years, I gradually stopped the beer or alcohol, simply because it didn’t sit well with my dizziness, and gradually I stopped missing alcohol much. I do have the odd beer or two though and when Dr. S told me I couldn’t have Rose wine (a big shock!) I asked him about beer, and he said the odd one or two should be OK.