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Success with pitzotifen and B12 deficient


#4

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


#5

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


#6

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


#7

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


#8

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


#9

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


#10

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


#11

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?


#12

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


#13

— 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?


#14

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.


#15

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


#16

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


#17

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 :?


#18

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


#19

Just amitriptyline missmoss


#20

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


#21

@ barb, thank you for that information! i am just at the surface of beginning to learn about b12 deficiency. i had my labs done and the range was 211-946 and i came in at a 282 :confused:

i have had b12 injections and take methyl form b12 vitamins, this is the next best form to take behind the shot. livestrong.com/article/45417 … ethyl-b12/
it’ll be interesting to see what my labs are now that i am taking vitamins, if my numbers are higher or if it’s relatively the same.

then this week i stumbled upon the mutated gene mthfr and how there can be a correlation with b12 deficiency and mav. i can’t wait to get my labs done and see if i have this gene, might give me more answers? i guess it’s a $150 test?

i am grateful for this new md/naturopath i’ve found. he is the one that has been educating me and wanting me to get all these labs done to see if we are missing anything. sure enough, i found out i was pre-diabetic, very low b-12 and a few hormone things. but things top neurologists never noticed…


#22

Salem I m on the B12 deficiency forum the amount of symptoms they have like mine is mind blowing to me. I read that most people need a B12 level of a 1000 to repair nerve damage.
Im not going to pretend Im an expert but I think something else is at play here with what happened to us and our central nervous system if I can get myself better with B12 injections then I will pay if I have to. My level is really low but doctors,neurologists ignore B12 levels. On the B12 defiency forum a lot of people got wrongly diagnosed with MS when it wasn’t even that. Their is a book on Amazon called is this a B12 epidemic I plan on reading that next x

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#23

Just found this post, thought I had better add on, that I have B12 deficiency also. Found many years ago, it was 105, well below the reference range. I have been receiving injections for years (the injection itself makes me feel bad for a week) then I am a bit better. After years of the injections (every 12 weeks) I asked them to test to see the level (between the injections) and it was 425. Then I was feeling better after being late for an injection, so I went 5 months without one. I started to feel more tired, more fluey, not well, (I wasnt sure if it was a virus or the B12 dropped) so I asked to be tested and it was 325. I have tried adding extra B12 in the form of lozenges and tablets but then I get more migrainy and vertigo. Nothing seems to be straightforward.

Christine