Dr Surenthiran - diagnosis Migraine Variant

So I’m just home from Blackheath Hospital after seeing the lovely doctor.

He explained how the whole thing works, showed me pictures, did a drawing of my jug overspilling and said stress of some sort triggered this he thinks but he could be wrong.

He said you’ve done all the right things so far by following the diet and was happy that I had already prescribed myself the Nort as that is what he would’ve given me. He said I’m to stay at 25mg for another 2 wks and move up in 5mg doses but not to go over 75mg. He said when he next sees me he’ll have a better idea if the drug is working and if we need to add another drug to it or not.

He said he wants me to do VRT and CBT at his hospital in Kent (Medway).

He said I’m not allowed to go back to work nxt week (couldve cried) and I cannot consider work for another 6 - 8 wks!!! So I’m going to lose my mind one way or another between now and then. He said dont overdo it on the ‘good days’ and cause a setback.

So on that note Im no longer a virgin wannabe Maver - I’m the real deal!!! Lucky me!

He said most patients get their life back but maybe you can’t go back to being the person you were before this started (cry).

He felt I should stop taking the Valium competely as my brain won’t compensate now that my autopilot is broken and I’m running on manual. And all I can think about is Clonazepam!!!

So on that note I’m going off to celebrate my diagnosis and go raving tonight at the Faithless concert!! (see The Lounge post).

Love Muppo xx

Not all bad news Mup,

  1. You have a doctor who takes you seriously and who has agreed to medically manage you until you are well.

  2. His explanation of the “MAV tolerance level” overspilling is quite accurate, thus it sounds like he is pretty saavy.

  3. He is willing to continue re-evaluating you and tweaking your meds until he / you find the correct cocktail

  4. You get to go “raving” tonight at a concert! (I assume that means partying :smiley: )

The only concern/question I have is …why is he recommending VRT for you? Until you get your MAV under control, vestibular rehab therapy seems to be a complete waste of time? Any other comments from the forum???

Have fun tonight Mup…have an amber ale for me. Actually, have two, I have had a rough week :lol:

I agree with what GG says and I also questioned the VRT. What was his rationale for that? I think most here have found that for MAV, VRT doesn’t help much and/or can make you feel worse in some ways. But I now see the other post about how you feel better moving, so perhaps he feels that the VRT will “train” your brain so to speak and for you, be beneficial. Or maybe he meant you were just supposed to go to the Rave? LOL. Never the less, don’t fret. It sounds like you are the on the right track. Have fun going out and watch the drinks if you indulge in that area (you know why if you read these posts!) :smiley:
Cheers, Bonnie

Hi Muppo,

I’m glad you have a proper diagnosis and that you have a plan for your treatment.

Can I ask what kind of job you do? Is it something that is dangerous for you to be doing if you have balance issues, or is the doctor wanting to keep you off to keep your stress levels down? Personally I’ve pretty much worked the whole time (other than a few days where I wasn’t up to driving, maybe 2 weeks or so in total over the last 16 months), as I find I do not do well being stuck at home with nothing much to do (I get very lethargic and fed up and spend too much time dwelling on how I feeling). I’ve also worked at home some of the time, to take the pressure off by not having to travel every single day of the week, but I’ve tended to alternate days at home with days in the office or lab.

Regarding VRT my consultant won’t consider it until my MAV has stabilised. She says some people do well with VRT, but in her experience most people need the MAV under good control with medication first. And for some of those people the symptoms go away enough that VRT isn’t required anyway.

— Begin quote from ____

He said most patients get their life back but maybe you can’t go back to being the person you were before this started (cry).

— End quote

I know, that makes me cry too and is a really hard thing to accept. I would say I do have my life back now, but it’s hard to accept that perhaps how I am now is the best I will ever be.

Enjoy Faithless! Where are you seeing them?
I’d love to go to a gig but can only cope with outdoor music events now.

Sorry Muppo, just looked at your lounge post.
Definately go as Brixton is fab and you’ll regret it if you don’t see their last gig there. Let us know how it goes.

So it’s 10.30 and I’ve dug out my old Faithless CD and am listening to MAXI JAZZ, the coolest man on earth (can’t believe he’s 53), in honour of your maving raving at the Brixton Academy. Also can’t believe it’s their last ever gig and therefore I will never get to see them. Anyway, I’ve voted on your poll over in the Lounge.

And if I’ve got it right, today you’ve been from Loughton to Blackheath, back to Loughton and then on down to Brixton, and later back to Loughton. Blimey girl, you’ll need a lie-in tomorrow.

So glad you’ve now got the initial Dr S. visit done and dusted and have an ‘official’ diagnosis. He recommended VRT in Kent for me too. Interestingly, I asked him about CBT and he didn’t seem to think it would be effective. You said he did the jug thing, did he also do the nail thing? Apparently my nail is hammered right into the wall as far as the head and is gonna need a lot of yanking! And he only advised 4 weeks off work for me!! (I’m actually on week 5 already, but hope to be back after Easter).

Anyway, hope you really enjoy the gig. I bet you won’t feel any worse for it tomorrow. Especially once you get out in that SUNSHINE!!!

Apologies to any non UK dwellers - we’ve all gone a bit crazy here as it’s HOT & SUNNY… in EARLY APRIL. We don’t know quite how to cope with it. My neighbour, with whom I am staying while dh and I try to salvage our marriage, decided to come home from work early today. I was sunning myself on his patio, and he appeared with a bottle of vintage Heidsieck Monopole Gold Top Champagne, opened it, and forced me to drink 2 glasses while he went and sat in his hammock. What are we celebrating? I wondered. Oh yes of course, it’s Friday and it’s sunny and it’s hot.

I’m just hoping Champagne isn’t one of Dr S’s ‘C’'s otherwise I’m done for tomorrow.

Dizzy Izzy xx

— Begin quote from “Muppo”

He said most patients get their life back but maybe you can’t go back to being the person you were before this started (cry).

— End quote

Probably you WILL get your life completely back. I think what he’s saying here is “there is no magic bullet that will cure you overnight” and is just trying to ‘manage your expectations’ (please excuse wanky weasel words). But like I say, given time, the right meds and lifestyle stuff and you’ll probably get mostly back to normal. Whatever ‘normal’ is for you :wink:

Vic

— Begin quote from “Go Gonzaga”

The only concern/question I have is …why is he recommending VRT for you? Until you get your MAV under control, vestibular rehab therapy seems to be a complete waste of time? Any other comments from the forum???

Have fun tonight Mup…have an amber ale for me. Actually, have two, I have had a rough week :lol:

— End quote

Todd - I raised lots of ginger beer glasses in your honour Friday night pal - dont you worry - hope you’re having a better week buddy and always here if you wanna PM me to shout things out x

— Begin quote from “beechleaf”

Can I ask what kind of job you do? Is it something that is dangerous for you to be doing if you have balance issues, or is the doctor wanting to keep you off to keep your stress levels down? Personally I’ve pretty much worked the whole time (other than a few days where I wasn’t up to driving, maybe 2 weeks or so in total over the last 16 months), as I find I do not do well being stuck at home with nothing much to do (I get very lethargic and fed up and spend too much time dwelling on how I feeling). I’ve also worked at home some of the time, to take the pressure off by not having to travel every single day of the week, but I’ve tended to alternate days at home with days in the office or lab.

— End quote

I work as a contractor for investment banks in Canary Wharf (financial district of London). My last contract was with HSBC’s private bank and it was the best job ever but I was doing a 50 hour week then have an hour commute each way to/from work. It’s not ‘dangerous’ per see but it def requires high energy levels as it’s very pressurised but I’ve always thrived on pressure. But Dr S told me a flat NO for 6 - 8 weeks or until he sees me next (whichever comes first)… Dont get me wrong, there was no WAY I could’ve worked before now as I was housebound and just too dam sick - but I guess now I’m feeling a bit better/stronger I want to run before I can walk…

— Begin quote from “dizzyizzy”

So glad you’ve now got the initial Dr S. visit done and dusted and have an ‘official’ diagnosis. He recommended VRT in Kent for me too. Interestingly, I asked him about CBT and he didn’t seem to think it would be effective. You said he did the jug thing, did he also do the nail thing? Apparently my nail is hammered right into the wall as far as the head and is gonna need a lot of yanking! And he only advised 4 weeks off work for me!! (I’m actually on week 5 already, but hope to be back after Easter).

— End quote

DizIz - Faithless rocked the house down, so cool for digging out your CD and joining me in spirit!! It is interesting about the CBT because he didnt say ‘why’ he thought I should have it and I certainly wasnt a quivvering wreck in the consultation - coz I was feeling good, I appeared completely normal (but maybe he saw straight through me hahahah). He didnt do the nail thing (I was waiting for him to) but only the jug… he told me to ‘let go of my guilt’ over my New Zealand move and to focus on today, the here and now. If I can make more progress over the next 8 weeks it will be brilliant.

I managed to have an AMAZING weekend - Faithless Fri night, out and about shopping and park picnic on Saturday AND winning the Grand National, stayed at a friends Sat night then Sunday out and about all day (even had a decafe latte!!) and then went out for dinner to Gaucho Grill (v posh) at Tower Bridge Sun night to spend all my Grand National winnings, even had a great day yesterday too but what’s concerning me is it was all because I was on 4mg - 5mg Valium Fri/Sat/Sun and Mon was 2mg and started to feel slightly crappy last night. Today my left ear is blocked/popping again but I dont feel too bad.

I just want it to be the Nort that is working and not because I sank enough Valium to floor a horse! I’m impressed you drank 2 glasses of Champers whilst on meds - I’ve been too scared to try any alcohol with the Nort!

— Begin quote from “Victoria”

Probably you WILL get your life completely back. I think what he’s saying here is “there is no magic bullet that will cure you overnight” and is just trying to ‘manage your expectations’ (please excuse wanky weasel words). But like I say, given time, the right meds and lifestyle stuff and you’ll probably get mostly back to normal. Whatever ‘normal’ is for you :wink:
Vic

— End quote

Thanks Vic - I appreciate your wanky weasel words any day of the week sweetheart hahaha!!! I hope you’re on a winning streak and long may you stay there!

Guys - you all mentioned about the VRT and I completely agree - even more so because he had the results of my ENG tests that were normal but he did also explain that they can only test so much of the inner ear so there could be damage elsewhere that the tests didnt pickup. Maybe he’s thinking that between now and when he next sees me that the Nort might have worked some magic and the MAV is more managable so then the VRT would be ok to start?

I dont know - plus also it’s 50 miles from where I live too and he said that the VRT and CBT could well all be on different days etc. I’ll have to wait and see what they say when they write to me.

I’m still convinced that Clonazepam/Klonopin would do me wonders - but if Dr S is against Valium - there’s no WAY he’s going to accept me bribing my GP to give the Big C to me!!! I’ll wean off the V this week… and then just ride solo with the Nort and see what happens.

Guys LOVE YOU ALL and my parents said last night that as much as they’ve hated me being on the internet researching and tormenting myself with all this stuff, that I would not be as far along as I am if it weren’t for this forum - I would never have known about Nort or Dr S and all the other stuff.

Please remember - my casa is your casa - any time any day. Peace Out. Love Mup xx

Hey Muppo,

Haha, I really must log into this board more often… I’d never have guessed there was another MAVer at the faithless gig with me that night :lol:

How did you cope with the sloping floor :roll:

Hx

Hi Helen!!

Oh dam it wouldve been wicked to meet up for a jumping session!! The sloping floor was def weird coz I didnt know if it was the floor moving or me!!!

Wicked night tho eh???!!! I ended up falling over when we left the place!! Typical!!

Hope youre doing well xx

Good God I remember that sloping floor when I went to see The Cult at Brixton Academy a while back (showing my age here…) and some geezer came pogo-ing into me from up the slope with a full pint of beer right in the middle of She Sells Sanctuary. I was not amused.

I saw Edie Izzard at Brixton many years ago. My band The Rolling Stones…don’t do small…so it’s a king’s ransom for the O2 still 10 rows back 'aint bad!