Vestibular migraines : Ivd not posted for s while... - Headway

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Vestibular migraines

Nackapan
Nackapan

Ivd not posted for s while . I'm over 2 years in. J had a bac fall hitting my head hard on concrete . Seemingly recovered. 5 weeks later collapsed and had first ever vertigo attack. Face was stuck to yhd floor . Brain ct them brain mri. Appeared okay. Found to be severely b12 deficient and been on b1e injections since. Migrdind . Dizziness. Exhaustion fatigue head pains pain in my hips and spine. Tinnitus . Light and noise sensitivity continues. Vision problems. Csnt watch tv or read a book. Text disappears from the right. One neurologist said post concussion syndrome and variant migraine. and said ongoing chronic tension headaches. One says UK kerl ul b1e levels vestibular disturbance no quick fix!!

I'm wondering if anyone has tried serc. /betahistine ivr not been seen by ent Gp thinks may be worth a try ?? Nog seen . Over the phone.

Awaiting neuro Opthalmologist appointment still since Dec. 2019. At Queens Hospital in Romford.

So any experiences with serc. Could you share please

.

15 Replies
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Hi Nackapan. I empathise with the headaches, light & noise sensitivity, tinnitus and dizziness. I have to beware when reaching forward as it triggers loss of balance and falling.

My mum and aunts took Serc for many years in the 70s & 80s. We're a family where the women (there are lots of us) have vertigo issues and I had severe BPPV for many years 'til being prescribed Stemetil which controlled it well.

Sadly I had it withdrawn some years ago due to interaction with heart meds, and nothing else has worked so far. So the dizziness remains my main health problem ; more so since further investigations have been put on hold during Covid.

There was some controversy regarding the effectiveness of Serc in the 70s ; it apparently gave relief for some but not others. It's pretty harmless though, with minimal side effects, so surely worth giving it a try for a couple of months ? ..... x

Nackapan
Nackapan in reply to cat3

Thank you. Sorry you too having appointments on hold. I've been waiting since Dec. 2019 to see a neuro opthalomogist.

Yes I have ti move very carefully. Bending is life ar times I try and squat but wonder if i will get uo again lol

My mum has been on serc for years but csnt remember how it made her feel. She has meniers though . A clear diagnosis rather than ? Post concussion ? Vestibular migraine and so forth.

Take care and i wish you well.

cat3
cat3 in reply to Nackapan

Whatever the root cause, I hope you find relief from the vertigo ; it can be so distressing. If the Serc doesn't help, maybe ask your GP whether Stemetil would be suitable for you -- and compatible with any other meds you're taking.

Sincere best wishes, Cat x

Nackapan
Nackapan in reply to cat3

Thanks. It's more of skull pains. Vision down. Off balance. Tinnitus.

But will bear kn mind the stemitil. I'm only on b12 injections.

cat3
cat3 in reply to Nackapan

My ENT doc has suggested a hearing aid to reduce the noise of tinnitus by amplifying external sound. Not sure how I feel about that but I suppose anything's worth a try.

Love your black & white moggy. Mine was a big handsome boy with the white bib and paws and larger-than-life personality ; he lived to age 20.

Fingers crossed for both of us going forward Nackapan ......🤞 x

Nackapan
Nackapan in reply to cat3

Oh I've not heard of that for tinnitus. I was supposed to be referred to ENt then all our lives changed I've 6 cats! The oldie is 16yrs 9m oldest ever had a cat live.

20yrs old is amazing. Hope you have other cats.

So many needing homes.

The last two came as kittens from a charity. I was too ill to travel to a booked weekend away. Home most of the time.

I've found all the cats have a rota lol. I'm never alone.

Hope you get to try that hearing aid. Tinnitus drives me a bit crazy at times.

T c

Hi I had the same vestibular problems after hitting my head after a fall backward off a rearing horse onto a rock solid ground d now 3 years ago . Most important to see the Neuro opthamologist to get lens to help and also wear dark glasses to hone your eyes a rest . I do t watch much tv yet as too challenging for eye / brain connection listen to hundreds of books on audible and just read in short sections , enjoy reading the news paper now . Hope you can get to see the opthamologist soon or if you can ask to go privately

Nackapan
Nackapan in reply to EATheadway

Thank you for your reply. Yrs I've chased the neuro opthalomogist appointment. I'm still in the system. Theh have asked me to provide the original mri scans which I got from the hospital on cd.

I have paid to see a professor who uses a colour machine for tinted glasses.

Usually used for dyslexia . Oe people like us.

That was a year ago. .I green/very lenses helped for shoo lights with a hat on . Havent found much help with reading or pattern glare though. Did at one stage find them helpful for a little bkackbabd white t v. Static news rather than anything moving.

Havent botherdcreying for a long time as my head really reacts .

Mr eyes fork stuck at times and very heavy?? Ni discharge.

It sed.s I've entered af stage of constant buzzing vision down and glasses clamped and skull pain. Ver y wearing.

I've not tried serc/bitahistine prescribed to try . Tbh scared it might make matters worse,??

Glad to hear you can read s paper now. Ivevrecently been able to listen to the radio for a while.

It's very slow to see any improvements.

Do you have any medication that helps you?

I hope things improve for you t c

EATheadway
EATheadway in reply to Nackapan

Hi straight after my accident I was given anatriptalyn to ease the terrible migraine type headaches I couldn’t tolerate any light or noise so spent first year wearing very dark lens and didn’t read or watch tv . I was keen not to rely solely on medication so found and an amazing accupuncturist in London who treated me for 8 months every week and made an incredible difference so I stopped taking the anatriptalyn - I had seriously intense headaches for the first few weeks but then these eased . My headaches still return if I over stimulate my brain so now I take a couple of paracetamol and lie down and sleep for a hour . I am learning to manage my brain and realise it is a slow balancing act and often get frustrated that I can’t function at high speed indefinitely like I used to !!! If you like I can give you the name and contact of the acupuncturist I used and I also learnt to meditate ( took a weekend course )which is an amazing tool to help the brain and visual fatigue . Hope this helps

Nackapan
Nackapan in reply to EATheadway

Oh yes very helpful. Sounds so similar . K was bedbound initially after vertigo collapse. This wad 5 weeks after bad fall?

I also tried amitriptyline after first neurologist thought post concussion. It helped for a few days as a break from horrendous migrain like events. I tapered off it after 3 weeks as do drugged and felt very rough on it. (10mg) I do uses paracetamol and ibuprofen at times and have to sit very still to try and stop control symptoms. I'm just over 2 years in akso have b12 injections as only thing found.

I have changed all the lights f in the houses to low old fashioned watt

Still difficult as lights causes acstagger walk and head pains.

K wear a deeo brimmed hat and dark glasses to get around a food shop. I managed this better now.

I try and walk daily but in s circle as can get weak suddenly. Any slopes difficult.

I sometimes go into 'automatic' as used to doing things ag speed. A no no now.

I also had s horses riding accident as a child (horses fell over at speed)

Not sure if this involved. Neurologist thought not but I've seen 3 and all had different views on things.

Propranolol was offered but the headaches had improved at that stage and decided not to take it.

If you could give the a acupuncturist when travel permitted I can hopefully get to london.

I've only been driven there once in 2 years! Recently.

I can drive locally.

Thank you. I've read about acupuncture and cranial Osteopathy.

I was treated homeopathicaly but it stirred up my nervous system too much.

One thi g did help with weakness and headaches but stopped as stays in your system.

I'm I tried that at times one nurofen can help me other times no.

I'm on regular b12 injections . This started for me in October 2018.

I think I have a mix . B12 deficiencies causing the many falls.

Last fall nasty . Also have flash backs of how j felt after horses riding accident despite it being many years ago. PIn to brush hair. Weakness. Inqbikith to concentrate. Text getting fade ect.

I use the PA forum as only 'diagnosis

Have followed pinkvision here .

Glad you replied . I'm still positive to make more improvements. I do cawthorne gentle pysio that might help you too.

I initially paid to see a vestibular pysio. Initially it brought on too many headaches but she got me walking again. When bedbound I did the eye exercises.

I also tried a pysio for continuing headaches and head pain. The neck exercises helpful but i think more used to men and sport. It again triggered too much head pain.

I saw an NHS one 3 times to build up strength . He then left and covid took over.

Sorry so long .

I hope you make more improvements . You sound a very positive. As I am most if the time.

I also have had to evaluate friendships. Another tough thing to do amongst dealing with day to day struggles.

I've alot of patience and caring for others. Thats hard too not to be able to deliver.

Like you rightly say its finding a 'new' you'

I do remember as a child overhearing my friends mother say I'm not the same since 'the accident'

Of courses we wont be . Fear is there. I did get on horses again . I did ride for a few more years. I chose clear grounds rather than fast rounds. Showing than more risk taking events .

So she was right. I didnt like hearing it at the time

Thanks again

Nackapan
Nackapan in reply to EATheadway

Yes . If you are able I would like the name of the acupuncturist please. Perhaps private message it. Thank you

EATheadway
EATheadway in reply to Nackapan

Hi how can I send the details of acupuncturist by private message ?

Sorry if too much to read I've done it in stages. Also dim my small phone . Uses the anti blue light on it that helps.

Dear nackapan my heart goes out to you try some self help health remedies if you are b12 deficient that's common eat whole ground bread and source all b vitamin supplements including b3 non flush.look to your own remedies and don't rely on the messy conjugated and delay ridden shortstaffed health service.

Nackapan
Nackapan in reply to charlie5540

I'm having b12 injections. Lots of vitamins. Good food. Pysio. Walk daily. Doing all I can at present. Serc. Has been prescribed to try . Not had it yet . Not on any medications apart from pain relief when needed.

Are you a sufferer too?

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