Update

[Nackapan]

Hello. I'm 6 months on now. I'm off amitriptyline as didn't really help. Taken longer to come off than on it. I trialled it to try and reduce headaches and migrains at 10mg. I'm still struggling with noise sensitivity to the point when I'm talking to someone my brain sizzles and nose vibrates. Apparently I go very pale. I feel I've it cold go into a headache. Taking on a phone is worse. Also light sensitivity a tally makes my legs feel weak and I get a stagger walk back. Still can't use my eyes easily. Typing this make my head sizzle really badly and my ears popping? ? Afterwards have to remove glasses and close my eyes to stop feeling yuk. Still can't watch TV or read a book. The latter odd as I thought paper better than a screen. All happened since virtigo thrn b12 defiency . Still having weekly b12 injections .

Has anyone else been through this . If so what helped you?? I dread putting my glasses on in the morning they feel clamped to myou ever increasing sensitive scalp. Anyou thoughts appreciated

[Ritchie1268]

Really sorry you're still struggling Nackapan.

I must've been very lucky as my symptoms were nowhere near as bad.

Very well done for coming off the Amitriptyline, I know how very hard it is to get free of stuff like that from my own experience.

All I can say is I'm still SI every other day & so far so good. I did try longer than this but found my symptoms came back.

I still get pins & needles in fingers, tingling burning feet, sleep disturbance, dodgy stomach & vision poor at times.

But everything else has gone & I'm hoping it will stay that way.

Perhaps you need more often than once per week until symptoms settle down?

Hope you get sorted soon.

[Nackapan in reply to Ritchie1268]

Thank you. My gut feeling is weekly injections are enough at present. I'm wanting the gap to see what's what . I'm feeling some of the recent yuk was withdrawal symptoms. So although back peddling at present at least withdrawal symptoms will go. I will then reaccess. Thanks for your reply and kind words

[Ritchie1268 in reply to Nackapan]

I think that's the best way to look at it.

Withdrawals are the worst thing I've ever been through in my entire life & I went through it loads of times. I spent years getting "dope sick" as the dosage my Dr put me on worked for a while, my body got used to it then I needed more & more. Cutting a very long story short, as I'm sure you've read some of my other posts where I've ranted all about that "legal Heroin" 🙄 because I lost everything I'd worked so hard all my working life for. I now listen to what my body is telling me & not always what a Dr thinks.

I watched a program on Sky Atlantic last week called "This drug will kill you" all about the same drug my Dr put me on. I was in tears as it brought it all back watching how the drug I was on for years has destroyed & killed thousands of innocent hard working people.

The sad thing is it's still happening but slowly it's being publisised more & more now.

Unfortunately here in UK that drug is very rarely heard of which is why I didn't get the help I needed at the time.

I really do help you get sorted soon & you start to feel better.

Take care.

[Nanc72]

I have suffered with migraines my whole life, but just here and there. The last two years I was up to 15 a month. I tried numerous different meds and I finally took Topamax and it was amazing. Then as time went on the dose went up until I had to come off of it. I now get Botox injections. I just got my second round in February. Really decreased them a lot. I still however have all the other symptoms of light sensitivity, dizziness. I guess that the PA talking as my doses are not worked out quite yet. Hang in there 😊

[Nackapan in reply to Nanc72]

Thabkyou you. I've not heard of topa max I've got sumatripan now incase i cant cope if another comes. I've never had them before this. Exhausting as you are very aware. No I'm not settled on a regime at present. Trying to at least have a week not taking anything to see what I'm like. Hope you get sorted too

[Peasncarrots]

Have you had your vitamin d checked? Mine came back low (but not classed as deficient) last autumn so I started taking vitamin d daily - my head issues hugely improved in the weeks following this. Could just be coincidence of course - but may be worth investigating, if you haven't already.

[Nackapan in reply to Peasncarrots]

THanks. Yes have had it checked and supplementing

Blood test this Thursday to check again × folate magnesium and ferritin

[pitney]

Hi Nackapan, sorry you are still struggling with symptoms, as I said to you a short time ago the only thing that helps me with light sensitivity is wearing my dark glasses, we had a bright day on Saturday and I had to keep them on almost all day and close one of my curtains in the afternoon, noise I have to cope with as best I can, phone calls can be difficult as I have to hold the receiver about 18 inches away from my ear. I do find lots of things get more intense if I get stressed so I do try not to get to worked up these days, (I know thats easier said than done)

Hope things continue to improve for you sometimes it can take a long time before you feel that you are getting anywhere.

Take care and best wishes

[Nackapan in reply to pitney]

Thank you . I wish you well too. I have got prescription very dark varifocals nowith whoch I wore with a brimmed hat just to do a short weekly food shop. Still wasn't an enjoyable experience. It's odd as it's artifical lighting that affects me the most. Noise sensitivity especially at the end of the day awful. That seems to have got worse?? Like you say a roller coaster. I'm staying pretty stressful free as don't gof put much or able to do much at present. I'm thinking of changes my landline to an old fashioned one to see if that helps. Mobile I hold away like you on loudspeaker though not loud lol. Tried clup on blue light blocker but think I need to have glasses made or a screen to put on phone? Anyhow what we used to take for granted. Take and and best wishes toy you