So Iāve just driven 1.5 hours to get to Cambridge to see Mr Axon for a ātreatment planā.
Only I didnt see Mr Axon - I saw his side-kick who didnt even give me his name!
He asked me how I was and I responded āchronicā and he said āreally??ā - Iām like YES REALLY!!! He said ok lets go the list of your symptoms so I gave him my extensive list and all he said was ok I think we need to do VRT.
I said given that all my ENG results came back fine and the Audiology Scientist told me I did NOT need VRT, youāre now saying I do?! He said, it will help get your balance issues under control and deal with your axiety. I said well that isnt tackling the root of the problem and he said āno, you need to go back to your neurologist and see whether he still thinks itās migraineā.
He said I will have to go to Cambridge for the VRT (1.5 hr drive each way) and that they would write to me with a start date. I asked about further medication and he said āIām not here to prescribe medications for this and I dont think vestibular suppressents will work on youā.
I just burst into tears in his office and said this hasnt helped me at all and 3 wks ago I was told I did not need VRT and today I had high hopes for a solid treatment plan and youāre saying weāll try VRT and itāll help your axiety too.
I just walked out.
I feel even more out of my depth and alone than I did 3 hours ago and dont know what to do. Iāll have to go back to my GP to get a referal back to my Neuro and in the meantime stick with the Nortriptyline in the hope that might do something for me over the coming weeks.
He said āI dont know whatās wrong with you - it may well be migraine but you are a complex caseā.
I feel like Iām up sh*t creek without the proverbial paddle. Maybe Iāll just tell my GP that he said I could try Clonazepam/Klonopin and get it out of him that way as the Valium is not doing enough to dull down the dizzies/rocking - well, the 2mg that Iāve taken hasnt - maybe if I eat the bottle that should help calm stuff down!!! :shock:
Hope everyone here is having a better day than I am in pouring, rainy London.
My heart goes out to you. Sounds like you really didnāt need this āsidekickā guy.
I just checked your Mr Axon and colleaguesā webpage and although heās an otoneurologist he seems to have particular skills/interest in skull base surgery. Sounds like MAV and dizziness isnāt his or his colleaguesā top expertise area. I may be wrong, but the guy u saw sounds like he doesnāt know his a*** from his elbow. Was he another Consultant or was he Mr Axonās Registrar?
I donāt know how you came to choose Addenbrookes - were you recommended it by someone? I know itās hard and soul destroying but I think you need a second opinion. Perhaps you should ask for a Queenās Square referral (UCLHās National Hospital for Neurology and Neurosurgery) - at least there the otoneuro team link up with the migraine clinic team (well they did for me). Youāre in London arenāt you? I found my QS consultant very thorough, knowledgeable re. MAV and sympathetic, but I ended up seeking a 2nd opinion in Kent because I wasnāt convinced about her medication suggestions.
Meanwhile ask your GP re. clonazepam. I find the branded Rivotril far superior to some of the generics (no, I donāt have shares!). This should hopefully calm things down a bit for you in the meantime. I take between 0.25 and 0.5 mg per day only as required.
Iām now on day 3 of Lyrica, still at 50mg b4 bed. Supposed to up it tomorrow to 2 x 50 mg for 3 days. Dizziness much improved on day afer 1st dose, but this must be placebo! I was practically bedbound for nearly 2 weeks so the change is remarkable. Iām pretty convinced my MAV is caused by my hyperactive stressed out brain so Iām telling myself Lyrica is calming it all down. Also feeling relatively calm and relaxed (for me), and was able to go out to Sainsburyās yesterday for a short shop - nothing short of miraculous! Was told to expect feeling drowsy and wiped out - almost the opposite - have woken up feeling v. refreshed so far. Mild headache in evening yesterday, may be coincidential. Feeling hungry though and determined not to put on weight with this!
This bloody rain is only for today - tomorrowās forecast for London area looking good!
I started at Oxford, moved on to Addenbrookes (3 hr drive from here) to see (surgeon ENT). At Oxford, had all the ENT tests, told I had menieres from ECOG, took all my notes to Addenbrookes. Had two tests, walking up and down the room and standing on a leather stool with my eyes closed (I was not impressed). Said I had hyperventilation (in thing at the time), and an inner ear lesion, was sent to High Wycombe for VRT, where I travelled back and forth two or three times as well (the exercises did nothing for me).
Went on to Prof Luxon (more ENT tests) then on to Queens (National Hospital for Neurology) to be treated for migraine. Quite a lot of expertise there and all drugs to try. I kept doing round trips (7 hrs) (always a 3 hrs wait) to London, but to be honest, it was just the next drug to try, in the end I decided to stick with my neurologist in Oxford who let me try whatever drug I wanted to try next (for you, National Hospital for Neurology would be good, you are in London). They also can get hold of Flunarazine there if you did want to try that one, whereas my local neuro cant.
Iām so sorry you are going through this. Iāve been in the same boat off and on for many years. No one has really helped me but part of my problem is i canāt take a lot of the meds cuz i have low blood pressure and low tolerance for medication.
my GP gives me valium thank God but right now thatās not working too well either. Iām so sick today.
i hope you get some help soon. I keep toying with the idea of doing my home VRt exercises again but i donāt know.
From personal experience and what my therapist told me, VRT does not do much for people with MAV. Unless it is right next door or you have a driver to bring you home, I would advise against an 1.5 hour drive after words. VRT made me so dizzy by the time I was done with a session, we even stopped twice becuase I got so dizzy that the therapist wasnāt willing to go do anymore therapy. In the end, we agreed that VRT was wasting my time.
The one good thing that I will say about VRT is that I did learn that I have quite a few more motion related triggers than I thought. :oops:
You poor thing this is appalling treatment. If you are near London try the London Neuro Hopsital. On the other hand why not try Dr Surenthiran at the Balance Centre Medway Maritime Hospital. He has private clinics all over the place as well. I believe he does one in BlackHeath Hospital London. Google him and see. It will cost around Ā£250. Stick it on the bloody credit card . He will then transfer you onto his NHS list at Medway. He will sort you out. At this stage you at the very least need a diagnosis and can work from there.
Yes I agree with Fiona - see Dr S privately, get a prescription for something he thinks will work for YOU (may be nortripyline, may be Lyrica, may be something else), then heāll ask you if you wish to transfer to being NHS patient (and your GP can write an NHS prescription if the private one is too dear (my Lyrica cost Ā£240 for 40 daysā supply on a private script!!!)), so you ask your GP to refer you AFTER youāve seen him and got a treatment plan going.
Do it on MONDAY - ring up his secretary and make an appt for when he gets back from his hols!
Dr S is on hols until 24th Dizzy, his secretary is new and part time (not returning calls} so look for Spires hospitals in the Medway/ London area this is were he usually does hi private practice.
Sorry to hear about this very disappointing meeting with the doctor. I agree that it sounds absurd to be driving hours to go for VRT when youāve already been told that VRT is likely not to make a difference. Itās usually useless for MAV. It sounds like this guy was grasping at straws and had no idea ā nor was he even able to recommend medication. Waste of time. How much Nori are you on at the moment and for how long have you been on it?
Youāre not up shit creek without a paddle. Donāt go down that line of thinking if you can help it. Keep moving forward systematically until you find someone who can oversee your treatment. Nori is definitely a good start. Can you get an appt with Dr Rosalyn Davies over there? She knows what to do about this.
Firstly, thank you for your replies, Iām slowly dragging myself out of my pit of despairā¦ and feel I have support here.
DizzyIz - thanks sweetheart, I always appreciate your messages/kind words and yes I think youāre right about their areas of interest at Addenbrookes. The ENT I saw in December told me to go there as they were one of the best units in the UK to treat dizziness and balance disorders so thatās what I didā¦ I live in Essex just on the East London border.
I have no idea who the jerk was that I saw but all he repeated over and over was āyou need to have VRT to help your balance, which will help your confidence, which well help your anxiety but your neurologist needs to find the root of the problemā. I couldāve swung for him.
Fiona - thank you for your kind words and thoughtfulness in sending me the links. I will try to make an appointment with Dr S after he returns from holidays. On Friday and Saturday I took 4mg Valium - 1 am 1 pm and it really helped - today I only took 1 this morning and now its evening, everything is ramping up again so I dont want to take them willy nilly so the effect wheres off
Scott - thank you for your suggestion of Dr Rosalyn Davies - I see that she is basked at The National Hospital for Neurology and Neurosurgery at Queens Squareā¦ DizzyIz is this who you saw there? I am currently on Nort (which I got my GP to put me on) and did 2 weeks at 10mg per night and Iāve now had 2 nights at 15mg. I was going to stay at 15mg for a week and then go up to 20mg ā¦ itās basically my own treatment plan given all the research and helpful posts Iāve recieved from this website. Thank you for responding to my post and words of encouragement.
Iām just in such a desperate place of needing to be well enough to go back to workā¦ that would be the biggest milestone for me.
So I guess now I need to make an appointment with either Dr S in Kent or Dr Davies in Londonā¦ ?
I am seeing my GP next Friday so will whoop him about Clonazepam (Rivotril).
Iām pleased you feel supported and now are able to formulate a plan.
If youāre going down the NHS route first I canāt really say Dr S is better than Queen Square or vice versa. A lot may depend on whom your GP thinks they have a contract with or who is more appropriate for an extra-contractual referral. If you are able to use āchoose and bookā, Iād go with the one with the shorter waiting list.
Rosalyn Davies seems to be the top woman for MAV at The National (sorry I always call it Queen Square - I used to work there and thatās what we always referred to it by), but I saw her colleague Dr Doris-Eva Bamiou, largely because sheās a friend of a friend who got me in to see her quickly. Sheās lovely but probably not as experienced as Rosalyn Davies. I would recommend her except for the fact she muddled up my medication. She may have a shorter waiting list than Dr Davies though.
Not sure how easy it would be to get NHS referral to Dr S, living where you do. By the way, I used to live in that area - Buckhurst Hill - loved it, lots of celebs from East Enders in Waitrose! I got a private referral to him within one week - cost Ā£240 for 40mins, but Iām transferring to the NHS hopefully. I have a very obliging GP who more or less does what I ask of him (bless).
The Queen Square lot seem to like putting people through lots of vestibular tests - some nicer than others. Dr S didnāt do any of that (much to my relief).
Anyway, good luck with your GP and the clonazepam (ask for Rivotril if you can, although they may be awkward about that I suppose, and itās only me who seems to have noticed a difference from the generic on this forum).
As for me, Iām having fun and games with my pregabalin (lyrica) - started off miraculously well but getting excruciating migraines now Iāve upped the dosage. This may be totally coincidental as Iām about to start my period and Iām always worse then, but Iām worried the Lyricaās not working of course, being a glass half empty sort of person. But early days. Iāll be posting in more detail in a couple of weeks re. my progress on it or lack of.
Scott - yes I did read your VV post and found it v interestingā¦ hope your appointment goes well and will be interested to see what they advise you.
DizzyIz - I live in Loughton!! So we wouldāve been neighbours hahahah - where do you live now?
Iām confused with what you mentioned re going via NHS to see Dr S if youāre saying my GP might not do that because of where I live - but if I see Dr S privately first, I can then get transferred afterwards? When I asked my GP to do a referral to Addenbrookeās, heād never heard of Mr Axon or even the word Neurotology and just said heād find all the details and do the referralā¦
What I will prob do is pay to see Dr S and then transfer onto the NHS as you have done. My GP is v supportive and will also kinda do what I ask of him so I will be also discussing Rivotril with him on Friday too.
I have booked an appointment with Dr S at Blackheath Hospital on Friday 8th April. They couldāve seen me THIS Friday but my GP couldnt get the referral letter done in time.
Plus I thought - if I wait a few more weeks to see Dr S, it gives me longer on the Nort to see how itās working for me - by that time I wouldāve had 1 week on 15mg per night and then 2 weeks at 20mg per night (well, thatās the plan anyway).
I am seenig my GP on Friday to get him to write a referral letter for the Blackheath apt on the 8th and an NHS referral for the Medway Maritime to be getting that one in the system (plus beg him for Rivotril/Klonopin). I just read that under the law you are entitled to ask your GP for a referral to ANY consultant, no matter where theyāre based, if thatās what you want to do. They cannot refuse you on the grounds of location etc.
I have also written a stinking letter today to Mr Axon outlining my disappointment at not seeing him on Friday and the general conversation and conduct of my consultation with his puppet :!:
One piece of āgood newsā today though is that my disability allowance claim was agreed and processed and theyāve agreed to backdate it 3 months, so thatās SOMETHING.
DizzyIz - let me know where you live now and if youāre up to it/interested, maybe I could pay you a visit for a coffee break without the coffee!! :lol:
I swear I am moving back to New Zealand this YEAR if it kills me!!! :mrgreen:
So pleased you have a plan of action and things are actually moving. Also good idea to get the NHS referral sorted sooner rather than later. Iām having to wait as my GPās on holiday at the moment and I donāt trust any of the others in the practice!
I was reassured by your statement:
I just read that under the law you are entitled to ask your GP for a referral to ANY consultant, no matter where theyāre based, if thatās what you want to do. They cannot refuse you on the grounds of location etc
I sort of knew this but have had difficulty in the past with getting extra-contractual referrals to specialists.
I will be thinking of you on 8th April. Guess what? I used to live in Blackheath!!! It was many years ago that I worked at Greenwich Hospital (which was on the Blackheath side of Greenwich) in the days before they pulled it down, and had a lovely flat in Blackheath which I shared with a friend who now lives in New Zealand! I actually also did a bit of work at Blackheath private hospital for a while, b4 the days Dr S was there I expect.
Iāve lived all over London, but moved out to Bucky Hill after getting married in 1998. Used to love going to Loughton, and went for many many bike rides in Epping Forest. We left in 2002 and moved down to Surrey (Leatherhead, where my husbandās from - not really anywhere near you!) to be nearer dhās parents for help with babysitting etc. for our girls. Ironic really that heās now chucked me out and I hardly see them. But I have to concentrate on getting better b4 I can tackle all that crap. We still love each other so I hope things will work out.
Have had a better day today. Yesterdayās migraine from hell hopefully wasnāt a reaction to the Lyrica but more to do with time of month. Tomorrow Iām up to my target dose of 150mg (50mg x 3 daily).
This is so funny - weāve probably passed each other on the streets :lol:
Iām in Blackheath/Greenwich a lot as my best boy mate (I love him he dont love me usual BS :lol: ) has a beautiful apartment on Blackheath Road - the old Greenwich Academy Boys School - you must know the building - itās gorgeous and a stoneās throw away from Deptford Bridge DLR station.
I absolutely love that area and all the greenery around Blackheath. And spooky about your friend that now lives in NZ!!! I probably rented a room off your mate at some point !! :lol: I used to live in Christchurch and was meant to be moving to Wellington - all my stuff has been sent over on the boat and Iām living in the same 2 pairs of jeans and 6 t-shirts!!!
Epping Forest rocks. We moved to Loughton when I was 7 (Iām 33 now). Iāve spent 4 years living away from the UK tho, did 1 year in New York, 1 year in Vancouver, 1 year in Sydney (not far from Scott - I was in Coogee) and 1 year in NZ ā¦
You do have to concentrate on getting better and itās good to know the love is still there - but would be better if he could deal with his issues with your illness and dish out the love at the same time (in sickness and in health and all that jazz!).
Well, if youāre ever feeling up to it or meeting in Central London one day (not sure how mad that might send both of us but hey, at least weād have each other to lean on right??!!) just give me a hollar.
Good luck with the Lyrica - keep us all posted on progressā¦
One piece of āgood newsā today though is that my disability allowance claim was agreed and processed and theyāve agreed to backdate it 3 months, so thatās SOMETHING.
ā End quote
REVISION - letter today saying they are NOT going to pay me disability. So, a phone call last week saying they are and a letter this week saying theyāre not.
