Trying so hard to keep positive

Specific Illnesses & Conditions VM/MAV
1

After being diagnosed with MAV during Sept 2012 by Prof Luxon - I couldn’t help feeling dubious initially. I then found this forum and after reading through many posts, I realised that my diagnosis must be correct as I was reading an almost exact reflection of how I felt. I must say, I actually felt a bit overwhelmed when I read some of the eloquent descriptions and metaphors used. I felt a very reassuring positivity on not being alone anymore in my own private hell.

I am extremely fortunate to have incredible family and friends around me - all doing their best to support me over the last year or so through this and now, due to this forum, I think their (and my) better understanding of this condition have helped with all of our patience! Thank you all for that - very much!

I am now at the stage of 40mg of Nortriptyline, titrating from 10mg, by 10mg every two weeks. I am feeling a few of the side effects, such a pins and needles in my fingers, very vivid dreams, and a dry mouth - increasing especially for a few days after upping the medicine. The dizziness and feeling of walking on a bouncy castle with an elastic rope attached to one side (always pulling me to the left!) increases also for a few days when I titrate.

Unfortunately, I have had no overall improvement as of yet from the MAV symptoms. I am starting to feel a little despondent after the eight weeks or so of this treatment being the correct one for me. My positivity throughout the last year, aided by my wonderful family and friends, I am sure has been the main driving force of getting to where I am today, but I am struggling now…

I understand that this is a long, slow and winding road we find ourselves on as sufferers of MAV, and that there are numerous different medications to try, but I am unsure of how long one medication should be given before realising that it is not helping and to move on to the next. I am also unsure of what to try next? I believe that my GP is, as very helpful as she is, not too knowledgeable about this condition and has been guided only by Prof. Luxon in the original treatment plan of Nortriptyline. No other medication was mentioned to try if Nortriptyline wasn’t effective.

I would be very grateful for any points of view from those that whom, I am sure know best – those that are, or have been on this same road as me. The need to keep positive and as focused as my foggy brain can be at this moment is my main priority, and if “impatience” is the general consensus here then I am sure it will help with my focus to keep at it!

Thank you in advance.

Mike

2

If you went privately to see prof Luxon I would phone them up and ask to speak to her about trying a different med. I know her other meds are pizotifen and propanolol.

3

If your not feeling ANY improvement at 40mg then chances are it probably wont work at a higher dose I would definitely look to change meds at this point.
Where in the UK do you live ? Could you see Dr Sutherian he is based in Kent and is the best consultant for MAV he uses lots of different meds but he would help you Im sure there are lots of options.
Keep your chin up hope Ive helped a bit X

4

Hi mikees
I tried Nortriptyline & got up to 50mg with little benefit & ‘racing heart’ and overheating as side effects. My neuro, Dr Granot in Sydney, switched me to Prothiaden which I found better able to tolerate and at 75mg noticed definite improvement. Now on 100mg Prothiaden + Periactin and making good progress. I have increased my doses very slowly and feel that the gradual adjustments my body has had to make has helped with successful outcomes.
So glad to hear you have a supportive family who know that the weird symptoms we have are typical of MAV!
Barb

5

Thank you for your replies!

I am really pleased to hear some confirmation that I’m unlikely to get any better with the Nortriptyline. I have felt for a couple of weeks now that it is not helping, if anything, making things worse as it is just adding side effects and not improving the MAV. Another agreeing point of view has prompted me to email Prof. Luxon now to see if she will suggest an alternative to my GP.

I am in Hemel Hempstead, about 25 miles north of London. I consider myself to be very lucky that I got a referral to Prof. Luxon’s clinic at UCLH from my ENT consultant, all on the NHS. I am not sure I am in a position to see Dr Sutherian at this point, but maybe if things don’t improve after Prof. Luxon has exhausted all her possibilities, I may suggest it. I am keeping hopeful though that one of her suggested medications will help in the end…

Thanks again to all – I will keep you posted…

Mike

6

Professor Luxon is good at what she does but I feel the national are lagging behind where MAV is concerned there only three meds they use ami/nori , propranolol and pitzotifen. I know other specialists use many more than this.
I do think at 40mg you should have noticed something by now after 8 weeks even a small improvement but you havent had any at all so it more than likely wont work at higher doses and then its harder to tirate down and get off if it doesnt help.
Im not knocking the drug as amitriptyline (sister drug) helped me loads it just might not be the one for you I would definatley chage to something else if it were me.

Good luck Mike Im on pitzotifen now too with the amitriptyline and have improved x

7

Yes I agree, if 40mg of nori has done absolutely nothing for you then it doesn’t sound like the right med for you. It can take 3 months or so to see the effects of a med but definitely think about trying something else soon as there are many other options x

8

I have emailed Prof. Luxon and now just waiting to hear back from her… Hopefully she will agree with the consensus here, that maybe something else can be tried.

I did have my first “Migraine” headache yesterday for five or so years, no aura at all, but it just wouldn’t shift for most of the day. It has led me to thinking that maybe the MAV is finally being targeted somehow by the Nortriptyline with this change in symptom… I certainly do not feel any less dizzy and foggy. I will find out soon enough I guess…

I must say, (again!!) that this forum has been a great support and THE most valuable resource of information for me. I am so pleased that I joined and “took part” finally, as now it is personal.

Many thanks for your replies and support. WE WILL GET THERE! :smiley:

9

Hi whothatchick,

I never received a reply from her… I did, in the meantime, make an appointment with my GP hoping the two would tie up, but ended up going to my GP armed with Scott’s PDF “What to take to your doctor”.

Following lots of research, I decided that I would like to try Topiramate next. I chatted about it to my GP who instantly said “I’m happy to try it” and gave me a prescription there and then!!! My GP advised me to titrate slowly - suggesting 25mg in the morning and 25mg in the evening to start with and keep the Nortriptyline at 40mg. That was last Tuesday…

Oh dear… I have had the week from hell!

The next day - I felt sick to pit of my stomach, then the day after I got a sore throat. I now have a full blown cold with constant headaches and a runny nose and the dizziness is worse than ever… (This is a real effort to write!) I understand that a side effect of Topamax can be weight loss - (which I am not worried about at all as I have gained some extra weight this year from the lack of exercise because of the MAV), but if it is because it makes you feel nauseous all day long, then I would prefer not!!! - In the end, after three days, I cut out the morning tablet and also reduced the Nori down to 30mg - and thankfully the sickness has abated fully.

Last night I cried as I held my fiancée - apologising for “being so damn useless” yet again… And as ever she reminded me that any change in meds makes the dizzies worse and what with the cold as well… She is a Godsend! I also realised last night, as I was trying to get to sleep, that the impending “festive season”, with all the invites to parties and social gatherings filling the diary (I am grateful really!!!) was probably making me put myself under more undue pressure to feel “normal”, so as not to taint the atmosphere at the occasions… Oh the dangers of overthinking!

I will stay put on this level of meds for the time being and wait for the cold to work its way out and see where I go from there…. “Fingers crossed – as ever”

10

— Begin quote from “mikeees”

Following lots of research, I decided that I would like to try Topiramate next. I chatted about it to my GP who instantly said “I’m happy to try it” and gave me a prescription there and then!!! My GP advised me to titrate slowly - suggesting 25mg in the morning and 25mg in the evening to start with and keep the Nortriptyline at 40mg. That was last Tuesday…

Oh dear… I have had the week from hell!

The next day - I felt sick to pit of my stomach, then the day after I got a sore throat. I now have a full blown cold with constant headaches and a runny nose and the dizziness is worse than ever…

— End quote

Hi Mike,
I’m on Topamax, and have been for a long time. I just wanted to say, 25mg in the morning and 25mg at night is a HUGE starting dosage!! Most people start at 25mg per day, some lower. Don’t be afraid to go ‘low and slow’ with this drug if it’s giving you a hard time - I had to get to 50 via 15>>30>>40>>45>>50!
Best of luck,
Tony.

11

— Begin quote from “mikeees”

Hi whothatchick, … Oh the dangers of overthinking!

— End quote

You couldn’t have said it better! My problem too. :smiley:

Just a thought, with apologies if it’s so obvious it goes without saying that you’ve already considered it, but have you tried adopting the migraine diet alongside your med trials? Could be it might give you just that extra little margin of help.

Sounds like you have a great family and fiancee - never to be underestimated in our MAV world. Such support is priceless. Best of luck with your med trials.

Brenda

12

Oh my - as Tony said, 50 is a very high starting dose. I started at 25 (at night, so the sedation wouldn’t be so much of a problem), and stayed there for 2 weeks before increasing, but I know many people cut the 25’s in half to start.

And as Brenda mentioned, a trial of the diet - as well as lifestyle stuff, like regular bedtime and rising time, regular mealtimes, staying very well hydrated - can be part of your arsenal. Controlling these things that we CAN control gives us a sense that we have some control over something, which we really need when we feel that this dizziness stuff is getting the better of us.

Being sick with a cold on top of it just makes matters so much worse. :frowning:

I’m almost completely free of dizziness - vague feelings now and then, so minor as to be insignificant - so there is really reason to have hope!! Hang in there.

13

From my research I knew that 50mg of Topamax was a high starting dose - but I think, in my desperation to just “Get there”, I adopted a mentality of “If I am going to be bad - get it over and done with”, coupled with the doctor’s advice, I jumped straight in. I had to reduce to 25mg after three days of feeling very sick…

The good news… The cold has gone now, I haven’t been put off Topamax and today I am starting to feel a little steadier. It has been a week now so I must be adjusting to the 25mg level, which is really encouraging. I have also just read “Life, Topamax and MAV”, beautifullybroken’s post – It is so inspiring and has increased my determination even further to stick it out with the Topamax. Thank you Lisa!

My whole MAV episode started following a long term relationship breakdown, I really did fall into a “pit of despair” and shut myself away from everybody for a good couple of months. I then got sinusitis quite badly and that is when it really hit me. I couldn’t stand up unaided for weeks after that, coming downstairs on my backside and feeling very hopeless. I grappled at everything and anything that I thought could be affecting how I felt. My diet and lifestyle could have been considered a migraineur’s nightmare this time last year, too much red wine, way too much caffeine and a very unhealthy addiction to Pringles (huge levels of salt and MSG!). I even got it into my head that the multivitamins I took every day for the last 10 years may have had something to do with it. All of it stopped – and I never felt better at all.

My doctor suggested antidepressants (Prozac) – which after three weeks of taking, I became even worse. I was slowly transforming into a dizzy, immobile zombie. After I stopped the Prozac, I was so pleased to “just feel dizzy” again, I honestly think that that darkest, nightmare episode is now the foundation of my positivity. Never again will I think that things cannot get any worse.

Since then… all the issues in my long term relationship have been resolved and we are both so very happy and have recently announced our engagement! I have my diagnosis now (I don’t now feel like I’m going mad!) and I feel as hopeful and optimistic as ever.

A Positive Mental Attitude (“PMA Mike” my brother says to me when ending all our phone calls) is absolutely paramount. But it can be very difficult to remain patient when I look “normal” to the world – but the world is looking far from normal to me…

14

Mike, Professor Luxon is labelled as one of the best neuro-otologists in the world, so you are in the best hands. I saw her too and have been taking amitriptyline for a week only at 5mg so haven’t noticed any improvements yet - but i’m very sensitive to meds so hve to increase very slowly. If you have had NO improvemenet whatsoever after 8 weeks - i would phone Luxon’s secretary (you can find the number online) who will email her for you and ask if you can trial another med. Everyone is different, so i really disagree with people telling you noritriptyline didn’t work for them - it may well work for you, so perhaps you just havent reached the right dose for you yet. Email Luxon though - see what she has to say. Don’t lose heart. I know it’s hard to stay positive, but it’s important to remember that THIS TOO SHALL PASS . wishing you lots of luck, You will get better very soon. You’re on the right path!
(P.s> I too share your symtpoms - constant rocking vertigo with wooshing moments feeling like i’m falling ,earache, shifting vision and walking like i’m on a bouncy castle/travelator which stops and starts)

15

Great advice from Blondie x

16

Hi Mikeees - what was the verdict from Prof Luxon?