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Mav merry go round - Pizotifen success stories?

Hi

I am not new to MAV - I have had it on and off for 18 months, yet since January have become chronic. I suffer with feelings of imbalance, neck pain, head pressure and pain on the right hand side, sometimes ‘breathing’ walls and floor and the worst, derealization and brain fog…

I trialled Nort at a very low dose but due to the effect it had on my mood - very low, suicidal ideation - I was taken off of it. I had a telephone consult with Dr. Surenthrien on Monday and he has diagnosed me with MAV - a massive relief in one way - and started me on Pizotifen.

How long did this med take to work for those it worked for? It is hard to gaugue what percentage I am operating at - I would say 50% - I can drive and I can walk but I am stuck in my head, terrified this wont go, some foods are triggers for me I think, but it is all a bit of a mess!

I have gone the holisitc route in the first instance and am waiting for a stool test and a Dutch test to come back to see what is going on underneath. I started a candida cleanse but my symptoms became so intense that I could not hack it any longer.

I am desperate to hear the positives, so far Pitz makes me groggy in the morning and I have had an increase in headache activity - did anyone else find this? I have been reading positive stories every day, started VRT, diet changes etc. I think I am worried mostly cause my attacks were only ever 10-15 days with symptoms in between that I could mostly ignore. 4 months and counting now.

Hi and a very warm welcome. Sorry you are suffering. Try not to worry about whether it will go away. It will improve, believe me. Keep reminding yourself it will not kill you and you will get it under control. To be honest it will most probably be some time before that happens and longer before it goes away. Best to try to accept that as anxiety over it will make it appear worse and often can actually make it worse. So, Hard as it is (I know. Been there long time) try not to get too stressed about it.

This site will provide emotional support. It also contains bags of information. All the personal experience of fellow sufferers. If you use the Search facility you will find tons of info about Pizotifen and can follow others stories from the very beginning. In the Success Section and amongst the Personal Diaries you will find @gidlabu and @Janb Pizotifen success stories. So it is all there just for the finding. Please have a look.

Your experience starting Pizotifen is a common one. I remember @sputnik2 writing a near identical post when she started. You will find it if you use the Search facility. Most preventative meds cause increased symptoms/side effects on start up and increase many examples of which you will find by using the Search facility. I know for sure my very good friend @sputnik2 will come aboard to have a word with you about Pizotifen and all its little quirk as soon as she picks up this link. So don’t worry. You are not alone. Members on here will help you through. Chin Up. Helen

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Indeed. Pizotifen, over time, has done wonders for me, along with other meds. To the point that I’ve almost forgotten I ever had this awful condition. Read my Pizotifen Diaries on the website. Let me know if you have any Qs.

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Ah thank you both so much. I get a bit tearful that people are so kind and understanding.
@gidlabu I was wondering how long it took to see a difference, and what the initial effects of the meds were. I’m also going to get my hormones looked at as there seems to be a high female to male ratio in getting this. @Onandon03 you’re right, it won’t kill me and I think there are probably a host of other things that might so in a way I’m lucky. We are wanting to start a family and were waiting till this year but not sure that will be on the cards.

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Dosage will make a big difference. Some people can get away with 1 mg Pizotifen, persistent cases can need up to the maximum which is 4/5mg? from memory. With any preventative you are looking at between 2-4 months from hitting the correct dose for maximum effect although most people see improvement long before that but you do need the maximum effective dose, for you, (very individual thing that bit) to get maximum and then many people find they need eventually to add in a second med. If you look at @gidlabu’s personal diary you can read in good detail everything you are asking above. He has written up a detailed account of his Pizotifen experience in real-time as it actually happened.

There are very strong hormonal links with MAV. Depends where in the world you are but UK it is highly unlikely you will get much help ‘sorting’ hormones. Medics don’t want to know. It is not common practice to try to establish cause but just to treat resultant symptoms. Check the Search facility for ‘Catamenial’ and you may find info to your advantage as will you find the entire section devoted to Women’s Business. Also might be good idea to Search out ‘Grampian’ one Scottish health care board which has a nice concise patient information sheet summarising MAV preventative treatments. Helen

I felt some difference after 2 weeks of increasing doses, then after 6 months got to about 50-60% recovered.

Side effects: very very tired; first couple of days were just weird, then quite quickly settled down. Hunger x 100 which eventually settled. Slept well for first time in months. Still sleep heavily.

Hi
Pizotifen definitley worked for me - do check out my personal diary as Helen @Onandon03 has
suggested. I first saw Dr S in June 2018 and it took a good few months on x3 0.5mg and an increase to x4 0.5mg to start to feel more normal. It made me very tired to start with but that wore off after a while plus I was very hungry and did gain some weight. The permanent hunger has now gone ( not sure the weight has changed yet) and I can’t always sleep well at night, but I am almost normal. I still have 24/7 tinnitus and feel slightly off balance at times, but I am now only taking 1 x 0.5mg per day and hoping to stop altogether by the time I see Dr S again in July.

Before I took Pizotifen I couldn’t drive - it took 6 months for me to be able to get back to driving, so it isn’t a quick fix by any means, so don’t worry if progress seems a bit slow. I thought I would never feel well again, but I did and even with the tinnitus and ear pressure now I am about 95% improved than in 2018. So hold on in there and keep taking the pills!
Jan

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Thank you all so much for taking the time to assure me. It’s making me feel so much better!! I’ve seen online that people with VM tend to get relapses for the rest of their lives. Is this true in your cases? Or do you feel that you stay in remission for long periods?

I guess I’m worried about it impacting on certain things. One is that we were planning for a baby this year, but I’m worried MAV will make me unable to take care of my child in addition to pregnancy making me worse (although dr s thought the opposite would be the case). Another is that I have worked really hard for my career - I am a rehab therapist in (ironically) neurological rehab and also in paediatrics. I feel useless cause of the brain fog and DP.

This is a controversial thing to think, I guess, but I also wonder if part of me is blocking the healing process in so much that I get very concerned to think I’m making progress in case I get let down as this last 4 months has been a rollercoaster at best!!

Thank you all again for taking the time out of your Easter weekends to share with me

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I am none too sure about the word remission with regards to MAV. Many people get it under reasonable contro long terml by meds or some other means or combination of same… it is deemed a chronic ongoing condition so doesn’t technically go away. Once prone the sensitivity tends to stay with an individual I would say. That said many people seem to pass through this site and then leave never to return. Personally I’d say if it is hormone related it will follow one of several patterns I have noticed. Catamenial cases often stop at or post menopause. From all I have read it generally reduces in later life. It seems migraine attacks occur much more rarely in old age. MAV may hopefully follow similar pattern. Virtually no research has been done.MAV

When it comes to pregnancy some people find during pregnancy they experience no symptoms. Others find little difference. Of course coping with both baby and MAV post pregnancy can prove a struggle.

MAV is a rollercoaster full stop. Constantly up and down. And from my experience that tends to continue throughout. I doubt very much you could affecting it’s variations by mindset. That said it pays, as I know you must already be aware, to adopt a positive attitude.

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Hi I too am new here (6 months of daily symptoms, diagnosis came in early January) at which time an Australian neurologist started me on Pizotifen (Sandomigran). Keen to follow your story - particularly because I am finding information on Pizotifen is a bit tricky to come across presumably due to it not being used in the USA. At .5mg I noticed a marked, almost miraculous, decrease in vestibular and migraine symptoms by the two week mark and had nearly 6 weeks of being 90% symptom free -the fatigue side effects dropped off too over that time. I then had a Mirena IUD put in (necessary due to anemia) and things have gone a bit off, it may have happened anyway but I can’t help feel it’s the hormones - have had dosage upped to 1mg and finding the side effects more difficult (very deep early morning sleep, can’t be roused at a reasonable hour, and increased nightmares) persisting for a while longer and reviewing with Neurologist later this month. Keen to hear how you go.

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Hi cassia

Ah, hormones! The beast that seems to defeat us all!! I am more than happy to share my story with you. I have just ordered a Dutch test (cycle + complete) to track what my hormones do as I have pcos. I guess in a way you have a bit of an indication of what it is that could be a potential source of trigger. I will be revisiting my old dr who works with bioidentical hormones and got my pcos in to remission so I am happy to update and share with you anything I get regarding hormones and the results of my Dutch test.

I agree re the info on pizotifen. The consultant I saw here is deemed one of the top for VM. He said that hormones play a huge role and I guess the info about stats of 3:1 women getting it to men also strengthens that. Also that many find a shift either way in their symptoms as well.

I am so pleased you’ve found such relief with pizotifen. I’m only o 0.5 at the moment and will go to 1 in a couple of weeks. I’ve not found I’m massively more hungry so I wonder if the weight gain will still happen. Small price to pay for relief from the beast!! It could be that you’ll be a bit off until the mirena settles down? Hope all is well in Oz. I have family on the east coast and have been over many times, I miss it!

Thanks Helen. All great points. I thankfully have a dr who is private and works with hormones and bioidentical hormones which put my pcos to a sub clinical level which was amazing. I haven’t kept up with the protocol as my body had reset itself according to her, but definitely time to delve deeper into it I think. I agree with you, mainstream medicine don’t want to know, just ‘try the contraceptive pill’. Sigh.

Reminds me of this Topic Medication Crapshoot?

Hi there,
I was on Pizotifen for a year. I found it helped somewhat for me, but I did have increase in migraine going up and coming off it.
The main reason I decided to come off was that I put on 20 kg in a year! And the fact it didn’t completely help me, it wasn’t worth the weight gain. Hope you get a lot of benefit from it. I would just say, give any new med at least a couple of months to judge and let your body adjust.
Best of luck!

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Hey Becs,
Thanks for your warm response. I really hope the pizotifen works for you, and please update in a few weeks. There are a couple of similarities in your story too, my neurologist was also keen on pizotifen as a first line prophylactic for vestibular symptoms. But also the history of PCOS - which I had treated in my late 20s (almost 15 years ago) with bioidentical hormones which worked wonders at the time. As you say, the beast of hormones - but also makes me wonder if the predisposition to PCOS and the associated metabolic issues amplify VM symptoms ?? I am speculating there though.
Sounds like you are exploring all avenues which is fantastic, plus drawing on your neuro rehab skills.
Good luck and take care.

Hey, gidlabu just a thank you for your diary. Useful read. Hope you continue to be well.

Eeek! 20KGs! Do you think that was cause it increased your appetite or just the way the drug works? Did you manage to lose the weight after?Have you found a medication which does work for you? How are you getting on now?

Pizotifen is notorious for weight gain .It is the way the drug works and the main reason it is not in more common use. So effective in fact it is used for such after famines etc I understand. Many other preventatives also cause weight gain though not necessarily of such dramatic order.

Getting off topic here rather but there are many MAVers with both conditions and obviously strong hormone fluctuations.

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My Neuro said there was a direct link with PCOS and VM interestingly :slight_smile: