Afternoon guys
I have an update and quick question . So since starting pitzotifen I have been able to go the cinema twice the first with my anti blue light glasses and the second I forgot them but was still ok … not normal but ok. I could also drive and not be blinded by car head lights thisis HUGE for me. I am praying this is a good sign that pitz is doing something . I am only on day 11 and on 1mg due to go to 1.5 end of the week. I could tell I’d pushed it as on the way back from the cinema things got a little blurry driving home . I am assuming 11 days is very early with meds never sure how long it should take to work sometimes I do read people 80% better in a few weeks … I so wish that was me
My question is this , my worst symptoms and meds have yet to touch this. I get very spaced out when outside in a busy place . I know this has improved as I used to get it indoors and just looking at stuff. So I know it’s improved. It’s sooo hard to explain I guess when I’m outside and walking I feel drunk / spaced out and almost like I am looking at the world through funny lenses. Has any one else had this and was it meds that helped ? I would love to know anyone’s thoughts on what causes this sensation . Hope everyone so well
Amy
I am so much the same as you regarding the feelings you get outdoors…as soon as i walk into my 3 storey office surrounded by hoards of lights and prople im the same there as well…ive been like this 4 years. Ive e-mailed my neuro to ask for either Piz or trial another SNRI i will see what she comes back with…im so depressed with it all…ive struggled again at work this week
So glad your having some sort of life noe even if it is only the cinema
Jo x
Hi jo
I am so sorry to hear ur not having a good week I also feel for you having to travel in to work and be in a busy office . Considering you felt better on pitz I def recommend giving it another a go .
I have no words for the up and down rollercoaster of emotions this thing has given so my heart goes out to you . I do think it’s a case of trying meds until one does the trick Def think give the pitz a go . Hope this week improves a little
A x
great Amy, I think starting to do regular life things helps. I used to have the drunk feeling when walking and also the space out. It is much milder now with Effexor. What the effexor has decreased but not enough is the rocking when standing or sitting which I hate mainly because I can’t work very well.
I was wondering if Pitzotifen is not available in the US? I think no…
Anyway, good luck, I think you are on the way to recovery.
Jo, go for the med trial! I’ve read you have not given meds enough time. I am almost 5 months into Effexor (at 150 mg!) with several improvements. Still symptomatic, sometimes a lot, but in general I think things have settled down a notch.
This is great to hear I have heard effexor is very good for this I think it’s caused by wrong signals from the brain and ears . It is def my most bothersome symptoms I’m hoping with more time pitz will help more. Did it take a while for Effexor to calm this down for you ?
As for the rocking have you tried ami? I took 10mg and within days my rocking was milder
yeah, I think it took 3 months to calm the space out feeling/ drunken walk, and increased in dose, when I went from 75 to 112.5 and then 150 mg, those things started to calm down.
Re Ami, no, I wish! I had asked for it, long story short, I was diagnosed with severe anxiety post partum, and I am not was suicidal, but I told them I was thinking that dying was best for my family, so they did not want to prescribe Ami, because apparently you can overdose with it and die.
But that is at the back of my mind, as a medication to try for the rocking. Is your rocking gone? Effexor has calmed it down though, a lot. In the mornings I am basically not rocking. And now at night after I am done with all household chores, if I relax, it also goes down.
Hi Amy, I’m also on Pizotifen under Dr.S on 1mg at present and due to go up to to 3 doses in the next few days. Dr.S told me to take it as slowly as I liked in titrating up. I’ve felt a bit up and down so far but my partner thinks I have improved a lot. I went for a country walk late afternoon but felt a bit strange and disconnected, my ears are still crazy and I tend to feel dizzy an hour or so after taking the evening med.
Dr S told me to stay at the 3 tablets dose for at least a month and that it could take 12 to 14 weeks to see significant improvement on pizotifen depending on how quickly I titrated up and if the dose was therapeutic for me. I’m not sure what dose I have to go up to, I need to sort that . I think the idea was that after seeing him privately, I’d see him at Medway by the time I needed more intervention. He said I’d have to be patient and that it wasn’t a straight path. I’m looking at 12 to 18 months treatment once the right thing or combo is found because I’ve had this condition for so long. (22 years misdiagnosed for fifteen years) but if I’d been treated much sooner then the treatment needed would be shorter.
Good luck. I suspect I’ll get another med added in. I’m grateful after spending most of July and August in bed in the longest totally disabling bout I’ve ever had to just be kind of functional again (although I don’t drive anymore and “work” from home). I hope the improvement is the meds and not just coming out of a bad phase. It would be so great to have something work at last.
Yep, I have that exact thing. Its like I’m high but not in a good way. Like all my body senses are numb and I feel totally not human or capable of feeling like me. I too stare at the wall sometimes, totally spaced out. Its one of the worst symptoms, tied with rocking… It subsides as the headaches and rocking subsides. I am much better, but I still struggle with it sometimes. Sounds like pitzotifen is doing its thing for you! I remember the first movie I saw in the theater near my 1 year mark, I also wore sunglasses and had to close my eyes sometimes. I just saw winnie the pooh a few weeks ago without any sunglasses and I just felt so much better, it does get better, hang in there!
@sputnik2 sorry you have been suffering with this for so long and glad you have finally being diagnosed. My doctor told me it would take a good year to start feeling better, so to be patient. When I feel like I am not better enough, I remember that I am only 5 months from starting this treatment. My partner also thinks I am better
Yes…you are right. I just didnt " stick" with the meds long enough to feel the benefits thats why i was given Botox. I really need to add a med and im hoping my neuro will pick either Piz or Venaflaxine…i cant tolerate most of the others…Nort made me 100% dizzier…i need something. My ears and nose are throbbing to burst and 4 days last week i had to leave work or use annual leave…only time i feel “me” is when i lie still.
Jo x
Amy
Im just waiting for my neuro to get back to me. Im hoping she’ll choose Piz or Venaflaxine…anything that works so i can keep working
Im pleased you are improving i hope this continues …
Jo x
Interesting comments. Very much worth noting in this thread.
I think same might apply to people severely affected, with additional complications/excessive anxiety too.
I’m much like you, had it 15 years, misdiagnosed for 12. I’m 17 months in from hitting an effective/therapeutic dose and much much improved just recently. Helen
@Jojo65 have you try the cbd oil? I read somewhere you can get it in the UK… not sure though. My right ear is the one that gives me more problems these days. It is also the side where my jaw cracks. I think CBD has helped, but mind that I also had increased my meds, so not sure what is doing what.
Well i take Gabapentin for my right ear pain BUT nothing helps with the pulsating/pressure i get in my nose and ears… and like Amy im fine in my own house but once outside or in crowded places im like a spaced out drunk and disconnected from everything going on around me, including my workplace which i have to go to 5 days a week…its so hard. I will post as soon as i start any new meds!
Thank for your reply
Jo x
I also feel for you having to travel in to work and be in a busy office 
Def think give the pitz a go . Hope this week improves a little 
