Success with pitzotifen and B12 deficient

I realised I havent been on in a week or more mainly because Im getting better :smiley: Im four weeks into pitzo and about 10 days at 1mg dose.
I was housebound up till about three weeks ago unable to drive and struggling to walk across a room well its all lots better now and can drive with no problems. Im still feeling a slight inbalance when walking and when I say it was BAD before I mean BAD I was hardly getting off the sofa as walking was so bad for me for the last two months!
The intense spinning inside my head has gone I do still feel some dizziness but I can function with it. Im still not back to the way I was before I gave birth but I was so ill I literally did not think I would recover but I have and over the moon about it. I cant say 100% this is all down to the pitz but I was going no where fast before I took it so I think it has done something.

I needed to hear this myself 9 weeks ago and I am really happy I gave pitzotifen a try like I said though I would of taken anything.
I also recently found out Im really deficient in Vit B12 which can cause neurological symptoms and have probably had it for years and not known about it so if anyone out there has not has this checked please do. In the meantime Im so hoping things continue to improve for me I get to enjoy Christmas with my kids.

Lots of love to everyone on this site who got me through the darkest days of my life X

Donna, I’m so pleased for you. I wondered how you had got on at the neuro, did you go in the end?

So glad that piz seems to be working for you!!! There is hope! I have just started a supplement called 5-HTP which is meant to boost serotonin, it’s too early to say yet but I do feel a bit better today. I really hope I have found what could be at the root of all this because I do seem to tick all the boxes for serotonin deficiency. I saw you mentioned about B12. I think I had it checked a few years ago and it was ok but I know that serotonin and the B vitamins are all linked plus my brother has to have injections as he has B12 anaemia. How did you find out you were B12 deficient? Are you having injections for it now?

I really hope you continue to improve and enjoy Xmas with your boys! xx

Jem I see the neuro the 28th December Im still going to that appointment, I just always hope when I say I feel better I don’t jinx it and go back but I was feeling so hopeless I never thought it would get better again but it did andI needed to hear that at my lowest.
The GP got me tested after I went it showing symptoms of hyperthyroidism so they checked my B12 at the same time. Im so peed off that it was back in 2010 and they didn’t treat it then either. I have done my research on it the past few days and in Japan/China they treat B12 for anything less than 400 in levels mine was 134 and back in 2010 it was 177 so going down all the time. Japan has the lowest rates of dementia because B12 deficiency is rare there and they treat it at significantly higher levels than the UK do and GPs do not take it seriously.
It can cause nerve problems , balance problems depression the list goes on as its so important for a healthy central nervous system and GPs once again are un educated. I feel I will end up in a battle with them once again now over this as there is a reason Im not absorbing it in my food which can point to an auto immune problem. Im bringing all this up with the neuro when I see him anyway.
Sorry for droning on Jem but I want this info out there as I do think there are causes for everything that happens to us and we have to be advocates for our own health because no one else will. I do hope you get better how you feeling?

Donna, yes you’re right, people have to find out so much themselves because doctors just don’t know. I have had to figure everything out so far and basically tell the doctors what I think is wrong with me. My brother only found out about his b12 deficiency because he has crohns/colitis and it is a symptom of that. He has to have regular injections of it now. Dr Silver did order a blood test to check for it with me so I think some neuros are more clued up on this.

I am still dizzy/off balance etc but gradually doing a bit more and today seems to have been ok. I started these 5-HTP supplements yesterday so hoping they keep helping. I am increasing to 40mg nori at the weekend too. Like you say, I know this problem won’t be cured but I just want to get to a reasonable standard of living and do some normal things again! I will always live in fear of the vertigo but I just hope we are both heading in the right direction out of this nightmare! x

You are so right i know my vertigo will never go totally please read this its about B12 defiency a petition currently going through Scottish Parliament the symptoms are on there scottish.parliament.uk/Getti … E01408.pdf

Blondie this is fantastic news!!! Thank you for sharing and please keep us updated!!!

I too am vitamin b12 deficient (my tests were crazy low) and was reading online about the MTHFR gene mutation. have you heard about this?

This is a good link that talks about vitamin b12 and why we need it but makes we want to get tested for it to see if i have this mutated gene.

progressivehealth.com/b12-thyroid.htm

ive just checked my b12 levels from my blood tests and they were at 200. Interesting you say about this but the doctors said that is normal to me

Blondie, I saw your previous posts and you sounded very very down with it all. I’m so pleased for you that you are feeling better. And you too Jem, such good news!! I have been on the increased dose of nori for 6 weeks now (went 25-30). I was initially SO much worse for 4 weeks with pounding headaches, unreal amounts of dizziness. I have finally seen improvements over the past week, mainly as I have taken some time off work and am relaxing. I am wondering whether to up the dose again as per Dr. S’s instructions, but I’m scared of feeling worse again on the upped dose…any thoughts girls?? p.s. i have had years and years of visual disturbances and pins and needles etc. I lived in Sydney for a year and when I was there got very ill with these symptoms and the GP I saw treated with me vitamin B12 injections… x

Hi guys Richy your result would be classed as normal but the very lower end of normal please check out this thread pernicious-anaemia-society.o … 180#p46657 so much info on there honestly its a minefield but I think its got a lot to answer for with many of us.
Im not going to let the doctor fob me off with this now we need B12 to be 400 or over even people with higher B12 levels than mine get symptoms I for one and tired of being fobbed off by general practioners.
Please do your research on this people.

Lizzie I dont know Im not on Nori but I know it ramps up symptoms the pitz did for me for a week or so too can you wait till Xmas is over and do it then? x

Jem

have u checked with your neuro that u can take 5HTP along with the Nori? I always thought there could be an interaction b/w 5HTP and and anti depressant?

Hi Nabeel

No I haven’t checked with the doctor yet. I just thought I would try the supplements to see if they do anything. I think there is a danger of getting an overdose of serotonin if you take them together but I am only on a lowish dose of nori and only taking 1 5-HTP a day so I don’t think I am at risk on those amounts. If I feel I am going worse or getting side effects I will stop taking them x

— Begin quote from “Blondie”

Hi guys Richy your result would be classed as normal but the very lower end of normal please check out this thread pernicious-anaemia-society.o … 180#p46657 so much info on there honestly its a minefield but I think its got a lot to answer for with many of us.
Im not going to let the doctor fob me off with this now we need B12 to be 400 or over even people with higher B12 levels than mine get symptoms I for one and tired of being fobbed off by general practioners.
Please do your research on this people.

Lizzie I dont know Im not on Nori but I know it ramps up symptoms the pitz did for me for a week or so too can you wait till Xmas is over and do it then? x

— End quote

Hi Blondie,

Do you have to have a prescription for B12?

Hi Richy
Usually if your B12 is low your not adsorbing it for one reason or another as its in most foods we eat. You can try B vits you can get them on amazon try and get the ones that have folic in them too as usually low B12 and low folate go hand in hand.
The decent ones are about £16 but you get what you pay for also you can get B12 patches,sprays and lozenges how well you will asorb them is anyone’s guess which why they give injections.

PS I am not saying this is a cause for everyone but the symptoms scarily mimic some of mine and after being ill for three years I will look into all avenues for a reason I think I might be onto something with this.
Here is the list of symptoms b12d.org/content/b12-deficie … and-throat

Blondie
Just wanted to say hi and say that I am so glad you are doing somewhat better, as I know how much you have struggled. I have followed your blog and its marvelous! :slight_smile: I hope you continue to feel better! Best of luck to you! Thanks for the b12 info, and which vitamins do u think r the best to help with this?

Lisa
<3

Hi
Just some good vitamin B supplements with folate. Typically today is bloody awful should not of wrote I was feeling better always comes back to bite me on the bum! I had a chocolate binge last night only thing I can think of. Hate this illness :?

Hi Blondie!

Soooo pleased for you, this is such great news!!

Can I ask, what drugs had you tried to no success before pizotifen?

X

Just amitriptyline missmoss

Ivosalem,
Two of my children have the gene mutation which doesn’t allow their body to absorb B12. They have regular injections of B12 and take folic acid (5mg I think) every day. They are both migraine sufferers. From memory, the tests my kids had are much more than the usual B12 blood test. I’ve had the tests which came up OK. Their father died ten years ago so couldn’t check whether he passed the particular gene on. I must ask them whether any of their children have had the tests done.
Barb