Thats a shame - will try to get something to speed up my metabolism and just drink loads of water and hope for the best, hehe
@cassia I will make sure that I get back to you - I am still working out how the website worked and have been prompted by the site to tag people in posts instead of writing several at a time. Oops! Noted! My consultant said that there was a strong link with PCOS and VM/MAV although didnt really go into much detail. I think Oz is really great for the bioidentical medicine so great youve got access to it over there. I am currently making a video diary for my own thoughts! Have you noticed a dramatic weight gain on Pitz? I think my appetite has increased (especially for carbs!!).
@becs That is so interesting about the link, no doctor has said that to me, let me know if you find more information. The weight gain I am still working out (I donāt own scales 
) Iām a size 10 normally and Iām heading towards being a size 12 (my jeans are tight) but I definitely put on weight in the 6 months prior to diagnosis as I was so incapacitated and scared of moving. I also found eating regularly helped the symptoms so I was probably eating a bit more than normal. I take the Pizo with dinner and have noticed I get hungry in the hours afterwards, not so much during the day. I saw a couple of really good physiotherapists who gave me both exercises to help with the vestibular symptoms as well as a bit of an exercise program to do at home, so I do feel stronger, better in my body, more mindful of posture, neck and jaw clenching and much more confident about moving so I am trying to focus on that rather than the weight gain. Having said that, if it gets to the point were Iām really feeling the weight gain I do want to know what my next in line medication would be. The beta-blockers are out for me because Iām asthmatic. All the SSRIās cause weight gain too, and people donāt seem to like Topiramate much. I will ask my neurologist about Candesartan (processed differently to other blood pressure meds. so ok for asthmatics) as the pharmacist recommended it when I was talking to her about Pizotifen sleepiness (and I saw in gidlabuās diary that he tried it with success, followed by some complicating factors). I also use the Cefaly device which I find good for the milder headaches which can escalate. Gah, reading through the threads medication trial and era seems to be the common thread.
I think it was mainly the Pizotifen to blame for the weight gain. Only just stopped taking it, so will wait and see if I manage to drop the weight.
I am currently titrating up with propranolol and taking magnesium, vitamin B2 and CoQ10 supplements. They have helped somewhat. Symptoms not as bad, but unfortunately not completely gone. Will stick with it and see how I get on. If Iām not seeing a significant shift, then Iāll probably discuss trying another or different preventive with my ENT specialist.
Interesting @becs that your Neuro has flagged up a link with MAV and PCOS as my eldest daughter has PCOS and migraines . So far her migraines havenāt morphed into MAV and I sincerely hope that it stays that way.
I have definitely put on weight since taking Pizotifen, but decided that I would put up with it as the dizziness etc had stopped and I had got my life back. As I am post menopausal maybe I would have gained weight anyway!
Jan
Thanks @Janb, i went up to 1mg about 6 days ago and am feeling a little down and I guess a bit hopeless - although I must be positive because I have managed to do exercise at home, walking and being in the office still makes me feel spaced out. How long did it take for you to feel the full effects of the Pitz? I have seen some improvement dont get me wrong, but wondering if I am going to plataeu at this - 3 weeks on Pitz now and 1.mg for 6 days 
Hi @becs - I can remember feeling like that when I was at the same stage so donāt give yourself a hard time. Staying positive helps if you can and keeping up with a gentle exercise regime will help too - as long as you donāt push yourself too hard.
If you are still working you are doing very well as when it first started for me I couldnāt work and was off sick for 5 months. It took me from June 2018 to around the first week in September 2018 to start to feel nearly normal and even then I had good days and bad days.
When I started to take Pizotifen it took me a couple of months on 3 x 0.5mg to feel any benefits and even then it was really a gradual process of improvement - small steps forward with occasional steps back! . When I went back to work in September I increased my dose to 4 x.0.5mg per day as I thought I had stopped making any more progress, but I think I should have been more patient as I am now convinced I would have continued to improve without the extra dose. It is difficult to notice improvements as they are quite gradual, so you may not have plateaued as it is still early days - I am not an expert though, so if you are worried I would check with your GP and/or consultant.
I feel around 95% better now - I still have 24/7 tinnitus and a bit of ear pressure occasionally, plus feel slightly unbalanced every now and then - mainly after I have physically overdone things, or spent too long on the computer without a break - but this has taken nearly 2 years! I donā t think there are any quick fixes re MAV /MVBD! Jan
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Thanks @Janb, those words picked me back up during a bad turn. I think I am noticing small improvements. I have had a few days at 75-80%, but days where I dip back down to 40-50%. I have started meditation daily and I have started CBT. My worst thoughts seem to be helped a little by this. I have been working from home with quite a bit of success, although I still feel spaced out a lot of the time. Almost as if I am in a dream. I see many people have been bed bound and then got to say 50%. I am wondering if I will ever get back to 95 % and just feeling like I am me again. The problem is the last 25/30% is what makes me who I feel I am, I also struggle with slow brain and fogginess.
I still havent gone up on the Pitz so am on 1mg and have been for maybe three weeks or so, although I have had some really bad days at times too. I plotted a āgraphā and see my overall trend of symptom intensity has gone down, but is very spikey. Those who have gotten to 95%, do you sort of forget that you have this condition? I feel a bit like I am in a dream - more so when I am in my office or in a shop or something, but I so want my normal life back!
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Also - can I ask those who got to 70-75% ish - did you push through to feel normal? I think I am getting to the point where I need for my own confidence to prove that I can do my job and want to be able to participate in life again!
I definitely forget that I have this most of the time - even with 24/7 tinnitus!
@Janb - which bit do you have Jan?
Hi
Iām at a mostly consistent 70% on pizotifen. I take 4mg a day and can go up to 4.5mg maximum. It took me a few months on 3-3.5mg per day to notice how much better I was on a fairly consistent basis (menstruation/hormones throws things into a mess some months). I was misdiagnosed for a couple of decades with Menieres so Iām an old lag and probably needed a higher dose and longer time frame to dampen things down that most. I have put on weight, gone from a UK 12/14 to a 14/16 depending on clothes brand but Iām middle aged and perhaps eating more as Iām feeling better and not rushing around after lots of little kids like I used to. Like Gidablu, I could have added in candesartan on top of the pizotifen when I was at 3mg but I opted to go up on the pizotifen (better the devil I know) but I think Iāve plateaued on it now so might go for that option when I have a call from my specialist in a few weeks.
Iāve been on pizotifen for 20 months now and went up on it slowly and stuck on each increment for several weeks before increasing again. It has been kind to me. I just felt a bit dizzier and spaced out for a day or two after upping each dose so chose days when I could be home and not busy to up the dosage. I do have days when I get up into the 90ās and almost forget about MAV and feel like my old self but do have bad times still, but importantly Iāve been functional during those and not had to resort to going to bed. Iām not sure Iāll ever be totally cured (I think hormones are too much of a driver for me)but Iām still hoping to improve. I donāt know your age but when I was younger (30ās, early 40ās) despite not being on medication I had long periods when apart from ear fullness/some noise I was fine.
All the best
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Hi @becs
I hope all is well for you.
Sorry I havenāt replied sooner - I canāt access this site on my iPad anymore - I need to upgrade - and I am spending so much time on my laptop for work that I canāt face browsing anything else!
My tinnitus is a high pitched ringing noise which is there all the time and can vary in volume. At the moment it is not as loud as it can be and most of the time I can ignore - most of the time I donāt notice it when I am outside, or if I am listening to music, the radio , TV etc. Sometimes it can be deafening and I can hear it above the TV etc and often at night it seems very loud so I listen to the radio on a timer in order to get to sleep. So I donāt disturb my husband I plug in a Philips speaker phone which slips under the pillow - I can hear the radio and he canāt! I often switch the radio on at 2am in the morning when I canāt sleep - I am an insomniac and struggle to get to sleep and often wake up throughout the night so the speaker phone has been brilliant.
When this all first started the tinnitus was the pulsating kind but luckily changed to what it is now. I am not sure if it will ever go away but I can live with it as long as I am not dizzy or have vertigo! Jan
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Hiā¦ Iāve just read through this thread and was wondering how you are travelling @Cassia and @becs. Iām just starting off on pizotifen too. Did it manage to work for you? Iām in Australia and also keen to see some improvement. Really hoping you feel much better. Bel
Not sure if you realise this but if you press on someoneās Avatar it will take you through to access all their posts both in summary and activity form. That way you can check ālastā date they posted on and what was said. @becs posted less than a month ago on her Pizotifen experience. No reason you canāt call her up as you did anyway. Please donāt think I am ticking you off just trying to guide you around a bit better. I think I recall you saying you are new to this forum exp.
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Oooh I see. Thanks Helen
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Hi Becs,
Can I ask how was your experience with Dr Surenthrien?! And out of curiosity how did he make the difference between MAV and Vestibular Migaraine? My partnerās suffering with VM ( they said) and heās now trying pizotifen but so far not a lot of success. Heās at the beginning anyway.
Also did the pizotifen help you eventually? Your symptoms sound incredibly similar with his symptoms.
Thank you.
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Hi
I found him Ok I have only seen him a couple of times.
Yes pizotifen helped me quite a bit, but I also found out my triggers. I also found out I had black mold poisoning from living in a contaminated flat so I did a protocol with a functional practitioner.
I am still on pizotifen but now 4 months pregnant. That helped me (pregnancy) as well but obviously not helpful for your husband
Oh and I donāt think there is a difference between MAV and vestibular migraines? Pretty sure theyāre interchangeable but Iām sure someone on here will be able to help with that
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