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Pitzotifen


#1

Hello all it’s my 4th week on pitz so figured an update was in order … I have seen slight improvement in a few areas .

*First my light sensitivity has lessened . I can watch tv more and look at my phone .

  • The spaced out feeling has lessened ever so slightly

  • The 247 shimmery aura is no longer 247

For 3 weeks I am sure this please god means I am on the right track ! :pray:t3: However I am sure it will take many months to see more improvement so I’m being patient

The things Bothering me are rocking imbalance but like @turnitaround has said I figure this will linger for a while ! Also I still can’t walk out on to a busy road or place things just look off like I’m wearing the wrong lenses and the spaced out sensation gets a lot worse . However like @ander454 has said to me this faded gradually . So I’m hoping with time it will lessen. Also visual snow ! However I suspect that’s gonna take a while to go too!

For anyone reading don’t be scared off pitz so far it’s been the kindest med I’ve tried . It has NOT made me worse . Whereas some others had made me a lot worse . The tiredness was bad but only for 2 weeks now it’s fading . I am hungrier for sure I’m trying my best to stay active and watch my intake so far so good hopefully the hunger fades as it’s annoying but not unbearable ! I am also very bloated on pitz but again hopefully it goes and these are minor in comparison to some other meds.

Anyways that’s my update curious if anyone else had the odd sensation outside and in busy places and how long it took to completely disappear and they felt semi normal again ?

My goal is to be on a plane and take a much needed holiday when I achieve this I’ll know I’ve made milestones in recovery .

Something @turnitaround wrote that really resonated with me about recovery and realising that you are actually improving was mental health . I was solidly crying gor 6 months or so then I stopped crying and realised it was because I was making small improvements . Also the brain is a funny thing once one symptoms dissapears you forget and focus on the remaining symptoms this makes u think your not improving but you are .

I do think recovery is slow more over months rather than weeks I’m almost a year in and would say I’m 50% better from where I started I used to this that was odd now I think it may be the norm but who knows. I think this illness is massively misunderstood and there simply isn’t a quick fix . You have to be strong to get through this mav shit storm! Anyhoo I wanted to share my progress because when all I could do was sit in bed it was this board that got me through :slight_smile:


#2

This is so true. Glad to hear you are progressing!


#3

Thats great Amy…i can see you on that plane in the very near future!!
Jo.x


#4

Delighted to read your post Amy, well done, it’s a waiting game for sure but I’m hopeful for you, great to hear of improvements :+1:


#5

So true.

when i have tinnitus it takes the center stage. When tinnitus disappears and imbalance takes over that takes the center stage. When the migraine comes on then i ignore the rest and go into survival mode.


#6

Thanks so much @ander454 how are you doing now on verap?


#7

Please god ! I’m dreaming of it :slight_smile: how are you have you started Effexor ? X


#8

So true I totally agree the brain is the wierdest thing that’s for sure !


#9

Thanks so much @nin I truly hope this is the one for me !:pray:t3::pray:t3:


#10

Very glad to hear that you’re seeing progress, Amy. Even if it is slow, it is forward movement. I think you were wise to see the expert neurologist when you did. It is empowering and confidence-building to feel that you have been evaluated by someone who has the proper experience and has guided you toward the best possible treatment plan. Perhaps that makes it a bit easier to have the requisite patience—when there is more certainty that you’re on a correct path.

Re: perspective, you are right! I haven’t cried as much lately either and I realized that my expectations have changed in a couple of ways. Now that I’ve had the odd day of feeling closer to normal, I expect to feel normal again and feel that I deserve that and will keep working towards it. And on the other hand, when I’m so debilitated that the day is a write-off, I am more accepting of that and don’t get quite as dejected or panicked.

In my view, hope is the key to being able to carry on with a shred of sanity: just a belief that things will get better. It can be elusive with this condition. Yoga philosophy teaches the principle of santosha, or contentment: being okay with how things are, even if they are not the way you want them to be (or even very far from how you want them to be), because you believe you are moving in a good direction. Oops this is your personal diary, why am I yarding on? Will be glad to know how your next weeks and months go.


#11

Thanks for asking. Hanging in there, seem to be stuck at 70-80%. Trying to be patient. My rocking and overall dizziness is nearly gone. Got a lot of brain fog and mild-moderate head / nasal pressure which continues to fuel some depression. Doesn’t help that my son is waking up twice in the middle of night with tantrums and my sleep was already poor, so I’m waking up like 4 or 5 times at night now. But yeah, slow and steady wins the race!

Do you sleep better with Pitzotifen?


#12

Thank you so much @lsengara whenever you talk you make so much sense to me . Maybe walking this mav journey really opens us up. I feel a bit more in control of my body I think this is empowering because I am fighting back , I do not want to allow this to control me anymore . I also think therapy has helped ALOT !

As for the crying at one point all I did was cry , why me , make it stop I W wanted it over quick now I realise that acceptance and finding the right meds are key .

How are u going with everything have you started a new med ?


#13

Really great to hear this :slight_smile: ah man that sucks that must be so bloody hard with a little one , your doing amazing the considering as I know sleep is a big one for this but some things we can’t control.

What are your remaining symptoms ? Has the spacey feeling outside disappeared now ? God I can’t wait till that totally leaves me :grimacing:

I slept great for 3 weeeks then it stopped making me sleepy. :joy:


#14

Hi Amy
Yes im on to day 3 of Venlafaxine…small dose
No side effects( except 1st night i was restless) as yet so may add a little more next week. Had a half decent day today was still spaced out/ disconnected feeling walking to the post office but ive felt worse.
How is the Piz treating you,?
Jo x


#15

Hi jo
I’m so happy to hear this and that’s how I have felt better but still spacey I actually suspect this will be the last to go tbh as it’s a lot for the brain. I don’t have aura everyday and light sensitivity is way down I am praying I get more symptoms control BUt so far so good appetite ok now BUt so bloated not sure if u got that on pitz however this is the kindest med so far so praying it’s the one for me . I really didn’t like how the anti depressants made me feel :grimacing: x


#16

Amy
Piz was the only drug i could tolerate, that and Gabapentin. If Venlafaxine doesnt work i will be going back on it…but so far so good…lm praying this gives me some relief.
Yes, i did get bloated on Piz and starving hungry 24/7!!!
Jo x


#17

Yeah, spacey feeling is mostly gone since the head pressure is down. Mostly I just feel a bit lethargic and depressed, some weird off balance when walking, and tightness/numbness in the chest and throat. I some of these symptoms could just be side-effects of Verapamil, that’s what I tell myself to feel better anyhow :grinning:


#18

You are definitely on the right track. I remember I logged each day by percentage how I felt each day for a year and over time I noticed I had more 70% to 80% days and then there came a time I felt much better and forgot to log in my calender what percentage I felt.
I have days weeks even when mav seemed like a distant bad experience I have been on a plane many times since so you will get there no doubt. Keep doing what your doing. x


#19

Oh bloody hell not just me then :joy: hoping it passes ! :grimacing: well let us know how it goes atleast u have a back up :slight_smile:


#20

Thanks so much @Sumy2k18 sometimes I feel I should feel better by now . I’m not sure what the average is BUt I still can’t be on a busy road without feeling drunk but inside it’s faded a lot. Did that symptoms for you take a while to go? I do believe time is the biggest thing with this illness xxx