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Pitzotifen


#21

That’s amazing @ander454 makes me so hopefully this will piss off for me too lol! The day I can walk outside and not feel drunk il b so happy ! And yes I do think verap can have those se BUT also sleep deprivation from you little one :grimacing:


#22

That too is the reason most researchers would reject most of the valuable info we have created on this site. Scientifically only observations conducted in real time are acceptable for that very reason. Just me ‘musing’ again.

In fact I suppose we all ought to make a distinct full list of symptoms for our own future reference somewhere. Then mark them off with an approximate date of when we first noticed their absence. Would be a way of charting progress. Helen


#23

Yes it will fade I used to get dizzy just looking about especially in busy environments supermarkets were the worse now they don’t affect me at all. Just know that this won’t be forever and it will go when and and how long it takes to go varies I think with the individual person but I know that by constantly putting myself in environments that made me feel uncomfortable over time it got easier and my brain adjusted.


#24

Yes def think this a great idea ! Thank god for this website I’ve learnt more here than snt specialist !


#25

Thanks lovely atm feel like there a pane of glass between me and the world :weary: but if this symptoms went I could cope with rest so hopefully it passes soon !:pray:t3:


#26

How is ur balance Amy? Do u feel off balance when walking outside? I remember when I was in the thick of it someone suggested walking with a long umberalla incase u felt off balance. I used to go for long walks to try to get my brain to compensate it helped my balance and then brain to adjust. I imagine since ur a fit person ur balance is probably ok?


#27

That’s a good idea , tbh my balance can get bad but it averages ok mostly cos I train, but when I’m outside my eyes don’t keep up with everything so it feels like I’m wearing the wrong lenses and I’m in a cloud does that make any sense?:grimacing::grimacing:


#28

Yeah I get u hopefully this will get better for u soon I think after a year u should Start getting better days x


#29

I have the same symptom pattern—the screen b/w my brain and the world (I feel like my head is wrapped in felt or something), the wearing the wrong glasses, the feeling off balance (even if I am not actually off balance), the floaty walking, the distorted vision. These are all most evident when I am walking outside. I absolutely understand and it is the worst.

I’ve had some better days recently; I’m in the process of changing meds so maybe this drug is a better fit for my brain’s pathology. In my opinion or experience, these symptoms are the most stubborn and persistent, more so than the headache or actual dizziness. I just view it as part of the migraine. I won’t feel that I have meaningful symptom control until those sensations are eliminated or minimized.


#30

Yep, this one took a long time to go for me, but it is now gone, with only some mild recurrences if i’m having a bad patch. it is one of the most unnerving symptoms to have.

i felt it a bit the other day when i was walking through Soho to meet a friend for lunch. very busy, loads of people, noise, traffic, and i started to feel a bit like i was in a circus ring - i’m sure you know what i mean. anyway, after lunch, the weird sensations were totally gone.

to put into perspective, in summer 2017, i had many similar but far worse experiences, where i could hardly walk, i was hanging onto the the walls, and when i finally sat down i was nauseous for hours with the room spinning round me.

so - this kind of symptom is still lingering in the background for me, but nowhere near as bad as it was. most of the time it is absent or at least unnoticeable now.

one by one, the symptoms will fade as you recover. i can’t tell you which ones will go first, or how ling it will take, though!

hopefully it will b*&&er off completely one day! :laughing:


#31

Yes ! You describe it so well half the time I struggle to explain it to my partner it’s so hard to put in to words and is so bizarre to say the least . Mine are also worse outside think it’s too much on the brain .

I also agree to the last bit of your post , how are you doing on Effexor crossing my fingers it’s the one for you?:slight_smile:


#32

Thanks so much Gideon @gidlabu this makes me feel less crazy . I don’t know why but part of me assumed in 3 weeks on the right med I’d be cured ! So hearing it’s taken a while for others is very reassuring to say the least .

I’m so happy to hear it’s gone what’s odd is I had this as a kid in 20 seconds bursts so if it goes back to that il be extatic :slight_smile:

I’m so glad ur doing better and again ur diaries have been soooo helpful! Sure others will find it helpful too, Hunger pangs have calmed down but bloody bloated guess il take that over spinning !:joy::v:t3::grimacing:


#33

Sorry @Amylouise I am butting in here! I have been sleeping better since I have been on Piz, but I have been an insomniac for years and sometimes couldn’t get to sleep until 5 am. I am convinced lack of sleep contributed to this illness. @ander454 it is really hard to get enough sleep when you have babies and toddlers - when my eldest was a baby she didn’t sleep much so I can sympathise !


#34

Yes, pizotifen (especially taken in the eventing) will definitely help you sleep.
you may even struggle to wake up in the mornings - I still do, even after being on pizot for over a year.


#35

Good morning everyone

I figured I’d keep updating on this thread as I have found @gidlabu pitzotifen diaries so helpful . I hope mine could do the same .

I’m on my 5 or 6 th week pitzotifen , I am now going up to 2mg as of last night and under the request of dr s. As I am due to fly I really want to feel as good as I possibly can !

I would say pre pitz i was around 30% functional on good days 40/50% but there weren’t many. A year ago I was at 0% for a solid 4/5 months so I am very greatful I am not still there.

My light sensitivity is less but not disappeared completely at first it did for a few weeks , the aura went but has come back a few times not as severe though . This is what has prompted me to go higher .

I would say currently my bad days are 30-40% and my good days 50-60%. On my bad days I still function albeit it’s a struggle but before on my bad days I was stuck in bed. So all round I have seen positives maybe not as much as I would like but progress regardless.

Inside I can have moments of forgetting I’m sick but outside the fun really begins it isn’t as bad BUT the whole world still feels a bit Alice in wonderland ish. I still struggle with bars / busy places and supermarkets . Walking outside just feels off and things don’t look still.

My balance and visual vertigo have been a bit off the last few days. Only thing dosulepin was helping with was that so I may add it back in or take a small dose of ami as this also really got rid of my rocking sensation.

Anyways this is my update I’m currently on a mission to see more improvement in the next 4 weeks as I really don’t want to have to cancel my trip abroad . If anything I feel a bit exhausted these days of just not feeling back to normal yet . I am not sure what the average time for recovery is but having this for a year seems really hard mentally especially as I expected to be 80% by now but hey ho what can I do .

Anyways thanks for everyone who’s given me advice and support it really means a lot during what has been the hardest time of my life .

I’ll update soon if I see any more change :slight_smile:


#36

Yes I have noticed that I struggle to get up in the morning - especially on a work day!


#37

Hi Amy - great to hear that you have your trip booked - a real goal to help you keep positive. Progress can seem slow sometimes, especially when you have off days , but it as you have said in previous updates you are improving. I have had a good couple of weeks - the best and longest without too many symptoms yet - but at the end of the day still have ear pressure and tinnitus, to varying degrees.
have a good weekend! Xx :blush:


#38

Hi jan , thanks so much for the response :slight_smile:
And so happy to hear ur having a good few weeks that’s amazing ! Yes I am happy i have booked but just really hoping I improve more before then . Have a lot of imbalance still and visual stuff and visual vertigo but I know the dose takes a while to kick in so here’s hoping ! :slight_smile: will keep everyone updated hope you have a great weekend xx


#39

You sound like you are in a good frame of mind, Amy. I hear you about wanting to feel better before your trip but try not to get too attached to expectations. I have had thoughts of “well, if I find the right drug or right dose or right whatever it will be like flipping a switch and all of a sudden I’ll know I’m on the right track and things have turned around.” Doesn’t seem to be like that for most. The improvements seem to come very slowly and gradually, so that you might not even notice much from week to week. I know that you know this; I hope that you don’t get too anxious hoping for a big change before your trip, since that might undo some of your progress.

I may have mentioned that I have had a hard time identifying any triggers in the realm of food, or much else, really (apart from weather or a terrrible night’s sleep, like last night). Over the years I have noticed that some of my acute attacks have come around, usually before, significant events—even if I did not actually feel stressed or anxious or worried about the event, I wonder if my body was registering it via an acute attack. Once in university I had an extreme attack on the morning of an exam. By the evening it had passed and I wrote the exam. One happened just after I had concluded an important negotiation at work. Once I had an attack the night before a party I had spent weeks organizing. And last fall one came the day before a momentous job interview. I’m not sure how strong the connection is, because there have been dozens of other attacks correlated to nothing of importance at all, but it did get me thinking about the unconscious stress of anticipating even events we are looking forward to.

Just to say, it’s great that you are looking forward to travelling. Even if you are not feeling the way you want to feel, there will be parts of the experience that will be easy to enjoy, so make sure to enjoy those fully.


#40

Actually, unless you are having full on attacks or events which are neurologically overwhelming, imbalance or dizziness do not prevent you from enjoying a good trip.

In fact, trips are great mental therapy as they help you to ignore your symptoms and can be a great distraction!

And then there is also the possibility that excursions give you some good natural VRT too! :slight_smile: