My doctor thinks I'm crazy

[jsspill]

Hi all - I’ve never posted on here, but have been a frequent visitor as it’s so nice to finally find other people who suffer from the same things I do.

In May, after 18 months of living with this, I was finally diagnosed by a neurotologist (Mr Irving) as having MAV. I thought, yeah, finally someone who has heard of this and gets it!! He prescribed propranolol, which I began taking immediately and he quickly moved up the dosage to 320mg a day. I took this max dose for a month and noticed no difference whatsoever. So had an appointment with him this evening thinking he’d move me on to another drug as this one didn’t work.

Nope, he told me that if the propranolol didn’t work, that I couldn’t have MAV as it works for all MAVers. Um, really? Not from what I’ve read!! He also said that as I suffer from dizziness all the time with rare good days that also indicates I don’t have MAV as MAV is only ‘attacks’ of dizziness, not constant dizziness. WHAT?

So, he told me that my problem was likely EMOTIONAL and he is going to recommend that my GP refers me to a psychologist, as well as referring me to VRT and prescribing anti-depressants. WHAT?

I really wish these ‘specialists’ would do a little research into this disease. I feel like utter crap day after day. I can barely take care of myself, not to mention my 3 1/2 year old daughter. Being told it’s just my emotions is bull! My GP thinks I’m a hypochondriac as I’m such a frequent visitor.

I have regular, constant dizziness. Constant rocking of the boat/swaying. Regularly hold on to things for balance. Daily headaches, migraines 1-2x a month (have suffered from migraines all of my adult life). Utter exhaustion to the point where taking a shower is an accomplishment. Difficultly focusing on things visually, brain fog, eye problems. I do have some good days, but I define good as feeling about 60% back to normal - days when I can play with my daughter, be around people, laugh and have fun. But these days are few and far between.

I was originally diagnosed with vestibular neuronitis back in Dec 2010 after suffering with dizziness since Oct 2010. Was told by an ENT (private) that it would go away on its own soon. Work suffered, could not travel on train to go to work and could not look at a computer all day, so went on sick leave in Feb 2011. Had VRT, but it didn’t help - just seemed to make me sicker. Still suffering in May 2011, went the NHS route, had caloric test, came back normal. As I was suffering from migraines (before I even heard of MAV), went on migraine diet per ‘Heal Your Headaches’. After about 7-8 weeks, felt remarkably better. Able to exercise, enjoy life, watch telly and read for longer than 30 minute spurts. Stayed on diet, went back to work. Well, work made things worse (my job is in a busy office and 95% computer based, commute via train - HELL), but pushed on for 7 months until things got too bad and I couldn’t do it anymore. Back on sick now and private healthcare finally agreed for me to see another specialist. Saw Mr Irving (based in B’ham), who has experience with dizziness and is a neurotologist, who after reading my history and getting my details immediately diagnosed me with MAV.

So how can he change his mind so quickly after trying only one medication? I was in tears after the appointment, as I feel my ray of hope is completely gone. I’ll see a psychologist, go on anti-depressants, do VRT again, whatever. But if that doesn’t work, then what? He said we’ll just cross that bridge when we come to it. UGHHHHHHHHHHHHHHHH. So pissed.

Ironically, also saw an ENT (Mr Trotter) via occupational health for work that was trained by Mr Irving and Trotter diagnosed me with MAV as well and said he believed Mr Irving should prescribe nortriptyline as he has seen much success with that.

I am just so confused as to why a specialist could change his mind after one drug and not even try something else? I want to go back to work, I want to have another child, I want to do whatever it takes to get better NOW. I am not crazy, this is not all in my head, I AM ILL AND I WANT TO BE FIXED!

Sorry for the rant, but I figured if anyone would understand, it would be all of you fellow sufferers out there!

So is it just emotional?

[JamieH]

js, I cannot tell you that you have MAV. But I can absolutely, 100%, without a doubt, tell you that, if you DO have MAV, there are way more medications to try than propranolol, and the effectiveness of propranolol tells you exactly 0% about whether you have MAV or not. It took my doc 3 different medications before he got me on one that worked for me. The first two did almost nothing to help me at all. The 3rd one, topamax, eliminated my symptoms about 95%. Now, I did not have constant symptoms as you do–I woke up in the morning usually asymptomatic and then would trigger symptoms as they day went along, but at my worst times my symptoms would last for several days at a time.

If you want to pursue the original MAV diagnosis and see if MAV/migraine treatment will help you, you probably need to find a doctor who is willing to actually continue to treat the issue. Propranolol IS a great choice as a migraine preventive medication, but it is hardly the only medication that works against migraines. If you are serious about trying to treat migraine, there is no way you would stop after just trying one medication. Every person responds to medication differently and there is no “magic bullet” when it comes to migraines or MAV.

If your doctor refuses to trial additional migraine medications and won’t give you a good medical reason for it, you need to find a different doctor. I never like to give advice counter to someone’s doctor, but it frustrates me to see a doctor saying something like you don’t have MAV if propranolol didn’t help you. That is just patently false. Are you sure that is what was said? Is your doctor a migraine specialist? That sounds like something someone with no actual experience treating migraines might say.

BTW, my main symptom was the constant boat rocking/swaying. I could trigger it with bright artificial light, intense anger, or lack of sleep. Interestingly enough, I’ve never had what would be considered a migraine headache in my entire life, which is what made diagnosing me so difficult. Are you able to trigger your symptoms with anything, or are they more or less constant?

[Hannah]

Hello,

If your doctor’s only reasons for thinking this is not MAV is that propranolol didn’t work and that you have constant symptoms, then he’s talking out of his ill informed backside. I’m not a doctor, but I have had this condition a long time and know a lot about it from reading other specialist’s articles. Those statements simply aren’t true - that’s a fact. The many people on this board who have had to try numerous drugs (myself included) before finding one that works and who have constant symptoms are a testament to that.

I wouldn’t waste your time with his suggested treatments unless you have really good reason to believe he may have a point. I mean if you went to a doctor with a broken leg and instead of a plaster cast they suggested dancing around, you’d move on, right?

Are you in the UK? In which case i can suggest a really good neurologist who is one of the top in the field when it comes to atypical migraine. It sounds like this will be difficult re your health insurance, but seriously, I just can’t see the point in you wasting time with more VRT which you already know made you worse. In fact one of the big specialists in the field Dr Rauch, actually uses the fact that MAVers often can’t tolerate VRT and it can make them worse, as one of the ways in which to diagnose MAV.

Anti depressants are used to treat MAV, as it happens, so another route would be to take one not for your supposed psychological condition but for this. Or you could get your GP to give you nortiptyline to trial, if they will agree. You could tell them that’s what the occupational health bloke recommended. Obviously ideally you would have a specialist who was on board, but if that’s not possible, I would take it as read that you have a MAV diagnosis and just try and find ways to get a preventative medication.

I’m so sorry you have found yourself in this position. I was initially diagnosed by an ENT with anxiety when I was so unbelievably dizzy and brain fogged I was completely unable to work. It was devastating. My GP just thought the ENT was right and that I was a hypochondriac. It was awful. Eventually I sat in her office and cried and she agreed to refer me to another specialist and things got better from there.

H

[Markmindo]

I am so sorry your going through this. I so feel your pain. I have been dizzy since March 2010. After over two years I finally got diagnozed with mav in April. Luckly the first medication I was put on (topamax) has helped me a lot. I am still having a lot of problems with computers right now. I also work with them 100 percent of my day and just returned to work from a 6 months medical leave.

I am so fed up with the medical profession right now I can’t even put it into words. My first doctor constantly dismissed me.He sent me to vrt and then never asked to see me or follow up with me. In the end, when vrt didn’t work, He didn’t know what to do with me so he blamed anxiety(which I’ve never had I problem with until this). He had been filling out medical leave papers for me and I had a really bad day (for dizziness) one day and called there office for help. I was waiting for my computer glasses to come in the following tuesday and I asked them to do an extension on my medical leave until the glasses came in and they refused. They told me I needed to be treated for aniexty, they were done doing extentions for me and why were my glasses not in (as if I would now, I had no control over that). They finally agreed to wait until my glasses to come in but actully told me after that I was “on my own” Fort, I have a good neuro-ophthmolgist who took over on my medical leave papers for a while. That was in feb. My return to work failed. Went back on leave.

I left the original ent after that I went to a neurologist who has made me better by putting me on topamax. She has also messed up my medical leave though because she can’t fill out paperwork properly so they denied it. Now I have to appeal it. My job told me it happens all the time today though.

My gp wanted to diag me with depression everytime i saw him. Also never stuggled with depression until this.

It just so frustrating as it shouldn’t be so hard. Its bad enough to have this condition but to have to deal with all this non sense with the medical proffession and the medical leave just makes it so much worse. I’m so frustrated that I have to go through the appeals process now and it feels so unjust to me and I feel I had such a valid reason to not be working. I am going to fight it and will until the day I die if I have to .

When I went into get my balance testing done the phd told me they do not spend one day one the balance system in medical school. I’m sure mav would fall into that catergory. That makes me so angry.

I’m really tired of feeling like I have to justify this to my family, friend and especially my doctors. There supposed to be the people that understand this. They are supposed to be the professionals. I don’t want to explain this away anymore. I’m tired.

Sick of living like this,

Teri.

[scott]

— Begin quote from “jsspill”

Nope, he told me that if the propranolol didn’t work, that I couldn’t have MAV as it works for all MAVers. Um, really? Not from what I’ve read!! He also said that as I suffer from dizziness all the time with rare good days that also indicates I don’t have MAV as MAV is only ‘attacks’ of dizziness, not constant dizziness. WHAT?

So, he told me that my problem was likely EMOTIONAL and he is going to recommend that my GP refers me to a psychologist, as well as referring me to VRT and prescribing anti-depressants. WHAT?

— End quote

Yeah, this is just absurd. I almost want to laugh when I read these sorts of reports but it unfortunately also means someone like yourself was massively deflated and made upset by poor advice.

I think you know very well now that what you were told was nonsense. Given he is hell bent on telling you it’s all depression, why not run with that and just tell him you want to try nori at 10 mg to start and you will work your way up from there. You could also try amitriptyline or any of the SSRIs. Celexa, Zoloft or Paxil are usually helpful.

Cheers S

[missmoss83]

Hi Js,

I’m really sorry to read your story. I feel genuinely upset for you.

Like Scott says, maybe it’s best to humour your doc, just to get the prescription, and start on the nortriptyline. I started on 10mg and have worked up to 40mg.

However, is there any chance you can get referred to a different mav specialist? Dr Surentherian for example in London or Dr Silver who I think works in Liverpool?

x

[ilovesalem]

yep! been there, done than. i went to a “prominent” ent doctor here in san diego and near the end of my appt., he couldn’t “figure” me out and finally told me i was depressed! i was so mad! he didn’t have the honesty to just say he couldn’t help me or have an answer, so instead it was my fault and i was depressed. so ridiculous.

you were describing that you had rocky symptoms and that you felt like you were on a boat. that is exactly how i feel 24/7. i was diagnosed with mav and something called mal de dembarquement syndrome, mdds.

i’ve had mav since a child (for me they are quick true vertigo attacks that last around 30 minutes) and the mdds is a constant rocky, never still feeling. do you feel better moving in a car? feel free to pm me. i think these 2 somehow closely overlap and unfortunately there are no cures for either but certainly “band aids” to help!

[jsspill]

Hi all. Thanks for your replies - made me feel better. As you all know, its so frustrating dealing with this when nobody seems to take you seriously. I do have depression, but I didn’t have it before this all started!! It’s not just an imagined thing - its awful and real! I am going to go to my GP next week (have to wait a bit for the consultant report to get there) and see if they will put me on Nortriptyline. I think I have a good shot as I did take it two years ago (before this all started) to help with daily headaches.

I’m under a lot of pressure from work, but don’t know how I can go back feeling like this. Fingers crossed that the Nortriptyline works (and works quickly) and I can go back when my sick note runs out mid August. Ironically, just got a letter today that work has requested a medical report from my GP, so hoping the report won’t include the consultant’s anaylsis that its just psychological!! That definitely will not help at work!

I’m going to look into seeing Dr S, though Kent is quite a ways from me - I live outside Birmingham. Does anyone know of any specialists in this awful disease located closer to the Midlands?

Thanks again for making me feel sane!!

[tracey_c]

Hi jsspill, your story is very similar to mine! First diagnosed with lab then vestibular neuritis and then when I had the balance tests they said it was psychological and there was nothing they could do! Great! By this point I had developed anxiety quite bad and was suffering daily panic attacks - the worst time of my life. It was only be doing my own research that I thought I could have MAV and found this forum and saw neuro’s mentioned on here and went back to my GP and basically demanded a referral!

Anyway, I live in Staffs and at that point there was no way I could travel down south, but there’s a Dr called Nicholas Silver based at the Walton (Liverpool). However, he also runs a clinic at Warrington so I went to see him there. I would really recommend him and when he told me what I had I could have collapsed with relief that I wasn’t going mad (or dying!) adn the anxiety faded quite quickly as I could start to accept and deal with the condition and started trialling medications.

Good luck

[Hannah]

Hello,

I was going to suggest Dr Nicholas Silver. He’s one of the most forward thinking specialists in this field. A friend of mine sees him and he has been fantastic. I live in London, but if I needed to change neurologists he would be my first port of call. He will definitely get it, atypical migraine, including MAV is his biggest interest. He lectures on it etc..

H

[jsspill]

Thanks Tracey and Hannah. Is Dr Silver private or NHS? At this point, I don’t even know if my GP will refer me to yet another consultant, but I will demand something as they are not at all interested in being proactive! I know my private insurance will not cover me, but I am willing to pay out of pocket just for an answer and a plan to some sort of recovery.

I’m American, but have been living in the UK for 6 years - I am still completely confused on how the whole NHS thing works with referrals, etc.

[tracey_c]

Jsspill, when I initially went to see I was desperate and was willing to pay! He did do private then at the Spire hospital in Cheshire. However, when I rang to make enquiries I was told it would be quicker to see him on the NHS as he only did small amounts of private. Remember this was over 18 months ago so things may have changed, but still worth a call? I didn’t have to wait long for the NHS appointment - only about 7-8 weeks if I remember correctly.
Good luck. Tracey

[Muppo]

— Begin quote from “scott”

— Begin quote from “jsspill”

Nope, he told me that if the propranolol didn’t work, that I couldn’t have MAV as it works for all MAVers. Um, really? Not from what I’ve read!! He also said that as I suffer from dizziness all the time with rare good days that also indicates I don’t have MAV as MAV is only ‘attacks’ of dizziness, not constant dizziness. WHAT?

So, he told me that my problem was likely EMOTIONAL and he is going to recommend that my GP refers me to a psychologist, as well as referring me to VRT and prescribing anti-depressants. WHAT?

— End quote

Yeah, this is just absurd. I almost want to laugh when I read these sorts of reports but it unfortunately also means someone like yourself was massively deflated and made upset by poor advice.

I think you know very well now that what you were told was nonsense. Given he is hell bent on telling you it’s all depression, why not run with that and just tell him you want to try nori at 10 mg to start and you will work your way up from there. You could also try amitriptyline or any of the SSRIs. Celexa, Zoloft or Paxil are usually helpful.

Cheers S

— End quote

I would email this website to Dr Iving and tell him to spend a day having a good read and to shove his propanolol up his ass :x

[JamieH]

— Begin quote from “Muppo”

I would email this website to Dr Iving and tell him to spend a day having a good read and to shove his propanolol up his ass :x

— End quote

I’m not sure if that is considered an effective way to administer propanolol…

[jsspill]

Thanks Muppo! Very tempting! Oddly, the main reason I went to him is because he is a neurotologist and specialises in balance problems. I think he needs a hell of a lot more training!

[JoeT]

Wow. This exactly what I been going through. I’ve had two neurologist tell me it’s depression. The fact is I’ve been depressed because of this condition. Not the other way around. I feel for you. I finally got an appointment with a top MAV doctor. Unfortunantly, I have to wait till June. But, hey I’ve already waited a year. What another 3 months right? lol