Doctor's have given up

So 7 months down the line and i’ve had my last hospital appointment at the balance centre here in Zurich.

All vestibular tests and MRI etc… came out clear. The doctors have tried 2 types of medication (sodium valproate and sibelium) and think I need to be treated by a psychiatrist as theres nothing more that can be done from a medical perspective.

I did mention the likes or nori and amitryptiline but the doctors could not understand why i would even think about using an anti depressant to treat my chronic vertigo. Its quite funny actually, when i come to think that so many doctors globally would prescribe these ahead of valproate and sibelium as first choice medication.

I am seeing a psychiatrist anyway, to try help with coping mechanisms dealing with this illness, so i may ask whether she can prescribe me nori

Oh Richy (hug) how awful for you. Is there any way in which you can see another dr ? Sorry I don’t know your story? I’m guessing you’ve already done ‘the diet’ and all you need now is an anti-d? X

There are definitely many more options for you to try. Can you find another doctor over there who could help with this?

I have spoken to someone previously who was living in Switzerland when she got MAV however she was originally from London and she flew back there to go to the National Hospital for Neurology & Neuroscience in London. She got her diagnosis and a prescription for amitriptyline from them. That is one of their first line treatments as I understand it. Also they offer pizotifen I think. It would be worth trying it maybe. Good luck x

I guess different areas around the world deal with this illness quite differently. I am happy you ar seeing a psychiatrist. I found them the most helpful of all. Why don’t you print off some of the information from other doctors from this site to have a little arsenal of info to take with you.
2 meds is nothing…and you shouldn’t give up till you get relief.
Hang in there!
Kelleyh

— Begin quote from "Jem"

There are definitely many more options for you to try. Can you find another doctor over there who could help with this?

I have spoken to someone previously who was living in Switzerland when she got MAV however she was originally from London and she flew back there to go to the National Hospital for Neurology & Neuroscience in London. She got her diagnosis and a prescription for amitriptyline from them. That is one of their first line treatments as I understand it. Also they offer pizotifen I think. It would be worth trying it maybe. Good luck x

— End quote

hi Jem,

How interesting to know about your friend who also got MAV after moving to Switzerland. I haven’t visited a doc in the UK as yet but i may very well do so. I was thinking about whether to visit Dr Surenthiran however that hospital sounds very interesting.

Does your friend also live in Zurich?

I have sent you a PM with some further info.

I think prof linda luxon heads up the National Hospital for Neurology & Neuroscience in London

If it was me i would see dr silver or dr surenthiran :smiley:

Any other recommendations guys?

Dr Surenthiran is logistically easiest to get to for my uk base but I’m concerned he overly diagnoses migraine vertigo. This seems to be the only diagnosis he gives from what I understand.

Maybe I am just being a sceptic but I believe I may have spontaneous mdds and mav together

Richy, I am a patient if Dr S. I first saw him a year ago, at that point he couldn’t diagnose me because my symptoms were confusing. It took an MRI, and 2 more appointments for him to diagnose me with MAV. He doesn’t give the diagnoses away lightly. I think he’s a great doctor. A x

— Begin quote from "Anna31"

Richy, I am a patient if Dr S. I first saw him a year ago, at that point he couldn’t diagnose me because my symptoms were confusing. It took an MRI, and 2 more appointments for him to diagnose me with MAV. He doesn’t give the diagnoses away lightly. I think he’s a great doctor. A x

— End quote

Anna, thanks for the reassurance. I think it that case I will certainly go with him.

What medication has he tried you on so far?

To answer your earlier question, I have tried the migraine diet and the avoidance of other triggers with no success as yet

Good luck Richy! There’s a whole lot more mileage to cover before throwing in the towel. Shame on those Swiss doctors!

Brenda

Richy, I have been on nori since July 28th, I’ve upped it very quickly as Dr S likes to do I’m now at 50mg which I will stay at unless I have another particularly bad attack (last bad one was September 18th at the airport, 4am lots of lights, anxiety , not enough sleep etc etc) . I can say I feel at about 80% now. The only side effects that I have is errrrrm ‘toilet issues’ and tingling & a dry mouth. The tingling is non specific and Dr S isn’t interested! So it could be MAV or nori! I’m off for the balance tests this Friday (dreading it!) Dr S is a good doctor, I’m sure you have done this already but google him & MAV to see what it pulls up! GOOD LUCK!!! :smiley:

Richy,

Go and see a proper pukkah British doctor. One who will take the cane out of the cupboard and give those bewildered Swiss buffoons a damned good thrashing. You have numerous options other than the two dead ends the Swiss have sent you down. Hang in there!

Sounds like Dr S is your man.

Vic

‘‘Dr Surenthiran is logistically easiest to get to for my uk base but I’m concerned he overly diagnoses migraine vertigo. This seems to be the only diagnosis he gives from what I understand.’’

the reason for this is that the vast majority of people he sees do have MAV.

All I can say is that your doctors are certainly not playing out of the migraine treatment playbook that is used in the US (and in other places). Giving up without trying things like topamax or nortriptyline, if they really think you are having migraine issues, is, frankly, ridiculous.

— Begin quote from "JamieH"

All I can say is that your doctors are certainly not playing out of the migraine treatment playbook that is used in the US (and in other places). Giving up without trying things like topamax or nortriptyline, if they really think you are having migraine issues, is, frankly, ridiculous.

— End quote

tell me about it Jamie. When i mentioned Nori to the doc, he said that that is something that the psychiatrist should decide about… unbelievable!

I have booked myself in with Dr Surenthiran for December 17th, when I return back to uk. Can’t wait :slight_smile:

Yes that is truly unbelievable. This is coming from someone who is supposedly a migraine expert?

I could understand if they told you they didn’t want to try nortriptyline because they felt you weren’t having migraine issues. But to not understand the role that nortriptyline plays in migraine suppression indicates a general lack of migrane knowledge that is just astounding. It’s like they learned about migraines in their schooling decades ago and have lived in a cave ever since then. I don’t know when the studies were done, but it isn’t like this is just a crazy shot in the dark. There have been medical studies showing the effectiveness of Amtriptyline and Nortriptyline in migraine prevention and for your docs to not even know this seems like they must not be paying any attention.

Now personally Nortriptyline didn’t help my migraines, but that isn’t a reason why YOU shouldn’t try it. I know it has helped a bunch of people on this forum. It was a great anti-depressant.

— Begin quote from "JamieH"

Yes that is truly unbelievable. This is coming from someone who is supposedly a migraine expert?

I could understand if they told you they didn’t want to try nortriptyline because they felt you weren’t having migraine issues. But to not understand the role that nortriptyline plays in migraine suppression indicates a general lack of migrane knowledge that is just astounding. It’s like they learned about migraines in their schooling decades ago and have lived in a cave ever since then. I don’t know when the studies were done, but it isn’t like this is just a crazy shot in the dark. There have been medical studies showing the effectiveness of Amtriptyline and Nortriptyline in migraine prevention and for your docs to not even know this seems like they must not be paying any attention.

Now personally Nortriptyline didn’t help my migraines, but that isn’t a reason why YOU shouldn’t try it. I know it has helped a bunch of people on this forum. It was a great anti-depressant.

— End quote

exactly… the doctor suggested that a psychiatrist is only able to prescribe it for the anti depressant qualities… he had no clue about it being a preventative for migraine