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Amy on Pitzotifen


#63

Apparently Gabapentin seems pretty useful for alot of conditions. It’s very successfully used to treat congenital nystagmus (which is what Richard Osman on ‘Pointless’ suffers with not that I’m saying he takes it of course.). I just read about it very recently. I know that’s not what you have got but it would seem logical IMHO if it works for one eye condition, it might help with other visuals, and it will also work for MAV, it might seem worth a try. There might be some very good reason you shouldn’t take it we amateurs know nothing about, but it does make you wonder. It will be interesting to know what your consultant does suggest you add in, if anything. Wouldn’t be much point him advising exercise, not to you anyway! I’ve never had any satisfactory explanation either way about my eyes and MAV. Not from any’expert’. And I’ve tried and tried many times. Really it’s like what causes MAV. I don’t really think they know. I’m sure extant eye conditions are involved somehow. Not the cause but something that impedes recovery perhaps. It’s too much like coincidence sometimes. Helen


#64

I totally agree ! What’s really interesting is I have a slow saccade and I’ve had that since a kid , my chiro who is a functional neuro said it meant a certain part of my brain was weak . Which I found very interesting ! Thanks for the info on gaba i had no idea ! Hopefully the next med he adds gets me to where I need to be but the visual issues being there 247 just doesn’t make sense to me … migraine I always thought couldn’t go on for this long but I think this is a question even the doctors can’t answer


#65

Ha, that’s great! How studious!


#66

Hi Amy and @GetBetter- when Dr S prescribed Pizotifen for me, on the letter for my GP he had also suggested Gabapentin as an alternative if I couldn’t tolerate Pizotifen, so it is definitely one he uses. I am thinking it might have been better for me than Piz as, amongst other things it treats restless legs syndrome and hot flushes which I have got. The restless legs only just started since I have been diagnosed but the hot flushes and hot legs have been constant companions for the last 15 years.
NB My ears have been much better since my cold/congestion cleared @Onandon03 so the Piz is definitely working. :blush:


#67

Wouldn’t it be fascinating to see all these consultants little black books prioritising their chosen preventatives and know why they chose which for whom. They obviously don’t necessarily have details of other comorbid conditions or general patient medical history which is why they generally suggest alternatiives to the GP. Most drugs have contraindicators. But no doubt every specialist has their own favourites. I read alot of places that Pizotifen is not usually a first choice but reserved for ‘all else failed’ scenarios however it was your consultant’s first choice for you and seems to be serving you OK. Venlafaxine aka Effexor is a drug that treats hot flushes too. Gabapentin seems very versatile although Dr Hain doesn’t speak highly if it for migraine prevention. Helen


#68

Dr S certainly didn’t have any of my medical history and didn’t really delve much into other issues. Mind you I was a mess at the time and I guess he was concentrating on the vertigo and eye issues.

Interesting that Piz is a last resort option - I am very grateful that it has worked for me so far! I think I have been very lucky as although I still feel odd at times I am so much better. Gabapentin might fix the flushes, but I can put up with them not so the dizzies! Jan x


#69

Thanks jan oh really I didn’t know that :slight_smile:
I reckon dr s will add gaba tbh maybe if the rls gets bothersome you can swap other . So glad to hear ur doing well :slight_smile:


#70

impressive!


#71

Hey guys

I’ve been a bit absent online and I feel like an update was in order as this site has really helped me this past year ! Especially all the personal diaries :slight_smile:

So where am I at , been on pitzotifen for 3 and a bit months . It’s so hard to say how much it’s doing because I think time heals also BUT things that have improved .

What’s improved ?
Well Less blurry vision and light sensitivity , the heat haze aura is hardly there now unless I have a very bad day with lots of triggers! The pressure is less but not gone yet and it can go up and down a lot , the dream like feeling is less indoors not normal but definatley less, outside is still really hard especially on overcast days. Visual snow and floaters haven’t really been touched which is annoying ! My balance is better but still can feel the rocking but it is better it kinda goes up and down to be honest .

So I would say my good days are 50-60% no where near normal but I function and can do most things. My bad days are 30-40% but they no longer put me in bed. Apart from my relapse while away which did! I am on 2.5mg pitzotifen and 10mg ami.

I’m 12 months in from reading this site and others I guess I would say I’m where most of you had been at this stage but I really want 2019 to be the year I get to 80-90% as I am still limited a lot and miss feeling like my old self. I am due to see dr S the 14 of January I’m pretty sure he’s either gonna up my meds or add something else. I must say I feel very similar to @gidlabu in my progress. Which is great as I know he’s now doing a lot better :slight_smile:

The depression is a lot less which I remember James @turnitaround making a post about in which if the depression is less you are most likely getting better which I agree with. I feel less need to come on the boards mostly because I’ve learnt as much as I can and read so much information but secondly it’s hard to keep positive when reading the start of this journey for others . I do not mean that in a horrible way at all but it’s made me realise the people who get better don’t want to come back and be reminded of this nightmare.

But I promise to always keep my personal diary in the hope someone reads it and it helps them like this site has helped me. Ok enough blabbing this is my update :slight_smile: I hope everyone had a lovely Christmas and a healthy dizzy free new year .

Huge thanks to @turnitaround and @Onandon03 for being so much help on this site.

A xx


#72

Thank you for the update. I’m six months in, still very unwell, so at the beginning of my recovery journey in a way… and reading personal diaries helps me, so thank you :slight_smile: wish you a good further recovery.


#73

Brilliant post Amy and so interesting you found the Personal Diaries particularly helpful. So glad you are improving albeit slowly. I am sure your post will prove an example to newbies who are still struggling with the strange concept that is MAV. They can see what they are really dealing with and acceptance of the condition and its projected timescale pays dividends. Medics rarely give people an indication of timescale (@dizzy3 was told a year - so sensible) and that does nobody any favours. It’s wrong because people these days expect quick results with everything. It’s the culture we live in and when it doesn’t happen people become disillusioned, convinced it’s them and that they are never going to get better. They then drop the drugs/swap the drugs/stop the drugs and are sometimes throwing the baby out with the bathwater. A great shame, to read your story will give hope. I trust you will achieve your target in 2019. You deserve it, Helen


#74

Great update Amy! I think you are doing even better than me at 12 months, so its totally reasonable to think to get to 80-90% in 2019.


#75

Great to hear your update Amy. I’m also on 2.5mg pizotifen (no other meds) which I started in mid September around the same time as you, so am really interested to hear how you are doing. I’m about the same - functioning at about 50-60% up and down a bit, but the bad times are shorter and I feel much calmer and tentatively hopeful. I am functioning, was able to have some dental work done before Xmas, able to go into the local shops most days now, but I’m still not driving or using public transport and do feel weird, dream like and depersonalised when out and about or socialising still. The feeling of fullness in my ears is more variable, so when its less I have a better day. It’s a slow upward trend, nowhere near 100% but given my nightmare summer I’ll take it !!

I spoke to Dr S (phone consult of a few minutes on NHS) a few weeks back and have to go up to 3mg towards the end of January and then up again if need be a few months on and will have a review in June by phone (if/when Dr S has a new home, although my appointment letter is still from Medway). I thought he’d want to add something else in but I’m happy. I was warned that given my age and longevity of symptoms it’d be a long, slow road. He warned me in severe terms not to banjax recovery by doing a lot since I was feeling somewhat better, to still keep things low key and not tire myself out.

I think you were amazing travelling to the US feeling like you do. Well done! I hope things really improve further for you in 2019.


#76

Your very welcome Lucy , I hope dr s helps you and gets you on the road to recovery :pray:t3:


#77

Thanks so much Ander that means so much appreciate everyone’s support through one of the hardest years of my life ! If the dreamy off feeling buggered off I’d be ecstatic but we both know this thing is a slow healer but hey ho! Hope ur still doing well on topamax :slight_smile:


#78

Thank you so much Helen and thank you for your continued support . I think the biggest thing is acceptance once I stopped fighting the time frame I mentally felt better and I believe that’s half the battle. I don’t think any doctor can give a specific time but I know dr s said it’s a long road . I am pretty active so I guess for others who aren’t it could be even longer . The main things I think that’s helped is reminding myself of progress even looking at my comments on here from the early days to now there’s a massive change. I 100% agree about the meds I gave up on nort at 50mg as felt nothing but some have said they needed 100mg we are all so different. Hence why I was determined to stick it out with pitz. I really hope my personal diaries help anyone dealing with this horrific illness it truly is the loneliest thing to go through. Hope you’ve had a lovely Xmas and are still enjoying some 100% days :slight_smile:

A x


#79

Ah thank you @sputnik2 I’m also so happy to hear your doing similar clearly this thing is a slow healer! However sounds like ur in the right direction! The dreamy stuff is the worst for me it’s like a permanent screen between me and the world I really would love to know what causes it as I know it is not anxiety I haven’t been anxious for many months !

I assume it may be the last thing to go, interesting what dr S suggested I would of thought another mes too. Do you see him privately still? I was going to go up to 3mg anyways as I do tolerate pitz very well. We shall see what he says.

I get the pressure and when it goes up I have a worse day so it’s 100% all linked ! Bizarre illness honestly ! Thank you I cant believe I actually went it truly did me the world of good and reminded me to keep on fighting :slight_smile: hopefully 2019 is a good year for both of us :pray:t3:
A x


#80

I’ve seen Dr S privately twice while trying to persuade my GP to refer me.Once for a long “diagnosis” appointment and then a half hour follow up (that actually lasted a good bit longer) about a month later as I had a lot of unresolved issues and questions about treatment. I have seen him once on the NHS (for 5 minutes)and also had a phone consultation (rather than having to travel to Medway) that also lasted just a few minutes to just sort out upping the dose of pizotifen. I will see him privately again before June if the meds aren’t helping (enough) as its seems terribly hard to contact him with an issue ( I did ask him how to do this but he wouldn’t be drawn on it).

I agree it’s a really bizarre illness. I think onandon said that the only thing that is consistent about this illness is the inconsistency and that inconsistency bothers me, it’s so difficult to plan and I really hate letting people down. My daughter is getting married next year and I already really fear I’ll be useless and too ill on the day… I feel dizzy and off balance today, full ears and a bit nauseous but was able to do things yesterday and feeling pretty good. When I take a step back like this I have that little voice in my head that worries that the meds aren’t helping at all and I’m just back to how I was before the summer bad patch. I just try to hold onto the fact that generally the trend is upward and that I have to be patient.

I hate the screen between the world too. I often feel I’m just trying to make it through events that should be joyous and feel very disconnected. I had to take my youngest son to A&E recently and I think I needed the bed more than him, I’m not sure how I managed to make it through. But the main thing is that I did and I did enjoy some really nice days this Xmas with family where I felt more relaxed and part of it all, so I take great hope from that.


#81

Hi there. I think I have had MAV nearly 30 years and only diagnosed properly last year and never been medicated for it until I started taking a beta blocker last year. Can the GP prescibe pizotifen?It wasn’t on the specialists list for the ones he suggested? I remember reading that pizotifen is a better drug for MAV. Thanks R.


#82

Usually they prescribe beta-blockers, tricyclic antidepressants and anticonvulsants first. Pizotifen is actually the only drug specifically for migraine headache prevention, rest all used ‘off label’ as they say, really designed for other purposes. Pizotifen is consider last resort by many. I’ve no idea why this would be. It’s notorious for weightt gain apparently, I would imagine a GP can prescribe it, I’ve not read otherwise. I doubt they would go against a consultant’s recommendation however. It’s not available in many countries including US. Helen