Have you actually been diagnosed with a vestibular condition, Matt? What were the results of the MS assessment?
I'm sorry you've been messed around for so long and are still waiting for something definitive to come of all this.
Have you actually been diagnosed with a vestibular condition, Matt? What were the results of the MS assessment?
I'm sorry you've been messed around for so long and are still waiting for something definitive to come of all this.
Hi Pulisa,
Neurology sent me for NCS and EMG (travelled a good distance) end of Sept 2018. EMG not performed, NCS results start of Dec 2018 (over 2 month wait) ulnar nerve damage left arm, nerve damage left leg, never heard anything ever again from Neurology and as they couldn't of shown less interest if they tried about my 24/7 non-stop dizziness I went to ENT. They sent me to audiology who said PPPD.
ENT referred me to Neuro-otology UCLH London Dec 2018 as it's been dizzy 24/7 since July 2017.
Phoned and emailed UCLH all year and in the end I payed to see Neurotologist Dr Surenthiran at the Spire Tunbridge Wells. Who said maybe migraine variant balance disorder or perhaps an isolated brain stem lesion such as ischaemia. So yes Dr S said I have a problem somewhere problem is so many types of vestibular problems PPPD, VN, VM, BPPV and so on.
He has agreed to see me under the NHS at his clinic Medway Hospital. I have an appt mid Nov when he will arrange vestibular rehabilitation therapy and an MRI of my IAM/CPA region.
I got in touch with UCLH again after this and threatened to take things further and got an appt within 48hrs but it's not until January so waited 13 months since referral.
Brain MRI in June last year showed foci within the white matter which is generally something people get with old age and I'm 46.
Ta for asking x
Oi Oi mate,
Good to here from you. I've not been around much as had so much sh#t going on this Summer that wouldn't believe, so trying to catch up on everything.
I see you've been having a hard time mate good idea with the Jet! Lol
I often go down the seafront on windy days and when thunder and lightning is about. Just got to be careful at night up the seafront as the woofters might think you're there for a game of rubby knobsie!!!!
I din't want to take the junk meds they throw at you but living with this 24/7 dizziness is a nightmare.
Yeah ta my lad is doing better. Thank goodness.
Tell me more about CBD pls.
Yes, or at least the first version. Gabapentin has been around for many decades, pregabalin is relatively recent. Both were developed by Pfizer. Not sure why pregabalin should be much more expensive as it appears to be out of patent and, at least here in Oz, there are several generics.
I think your best bet lies with the vestibular tests and the consultant you saw at the Spire, TW. Beware the dreaded "Gaba Fog" and stick to meds targeting your vestibular issues in my opinion.
Will do.
There is a massive crossover with anti anxiety/depression meds and vestibular issues. Venlaxafine, Sertraline and Prozac are often the main ones used. Nort, Ami and Gaba also.
Audiology said PPPD and try Prozac. ENT consultant wasn't happy with that so referred me to UCLH, you know the rest with those muppets and it's supposed to be the best Neuro-otology place in the country! Not on the clerical side tho!
I wish you lot could talk to my other half so she could confirm that 2 years + ago and for nearly a year I was clinging to the walls to walk to the toilet. It's now 25% better than back then.
I'm a member of a vestibular group, people out there aren't being taken serious soon enough and for things like vestibular neuritis which can cause permanent damage, so they're are stuffed.
Dr Surenthiran was very good.
I did a search on NMP on Gaba when I started taking it last week that you had been offered it at one time but refused to take it. Side effects?
Mine was prescribed for a chronic pain condition but one of the side effects which even doctors admit to is brain fog which I just couldn't contemplate being a carer and having to face an inquisition every day!
UCH is a great hospital but waiting lists are mega-my son goes there. You will see an expert there who will diagnose you properly.Don't lose heart, Matt-seeing the right consultant will be the start of your recovery.
Yeah it will be good to go to UCLH. Neuro-otology is based at ENT Grays Inn Road.
Been to all of the London hospitals when I went to London everyday for work. Going to GOSH always gave me a lump in my throat.
Are you still going to pain management Pulisa?
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