The illness that doesn't exist

New here, let me introduce myself šŸ¤
1

Hello everyone,

first I apologize for my english. Iā€™m from Germany. For about 4 years now, Iā€™m struggling with symptoms no doctor can explain. Iā€™m perfectly fine over daytime, but once I go to bed and right on the verge of falling asleep, all of a sudden I get this massive nausea-attack out of nowhere. Of course then I open up my eyes and see the whole room is spinning. This attack goes away as quickly as it came and I never vomit from it, though it feels like I have to. But when I lay down again and take the second attempt to sleep, it happens again. And again. And againā€¦ everytime when Iā€™m about to drift off to sleep, right in that very moment. Every night! No exceptions.

Iā€™m so exhausted. Usually it takes 10-20 attempts until I finally fall asleep, which means that I finally sleep 3-5 hours after I went to bed cause this s***t keeps me awake.

Iā€™ve been to many specialists with this problem. ENT, neurologist, endocrinologist, physiotherapist, orthopedist, had a gastroscopy, have been tested for sleep apnea (negative), MRTā€¦ No one has ever heard of this problem before and Iā€™m feeling completely lost.

This problem is completely unaffected by everything. No matter if Iā€™m happy, sad, eat before sleep, donā€™t eat before sleep, sleep on the side, back, sitting, my bed, sofa, not even at homeā€¦ Iā€™ve tried lots of drugs too. Pantoprazole, dimenhydrinate, domperidone, metoclopramide, even ondansetron. None of them have any effect.

Iā€™m so desperate. Is there anyone who had this problem before and KNOWS what it is? And how to beat it? Please, if anyone has the slightest idea what is wrong with meā€¦ let me know. I donā€™t want to live the rest of my life with this.

2

Hi, and welcome

Ah, if only my German was as good as your English. Iā€™d be a happy bunny. Your English is so good, Iā€™d never have noticed if you hadnā€™t mentioned it.

Sorry to hear you are suffering. Most on this board can sympathise with your predicament of being unable to find out whatā€™s wrong with you. Itā€™s something we have nearly all experienced. So frustrating. This board is a vertigo support group. We arenā€™t medics so cannot diagnose Iā€™m afraid though by comparing symptoms somebody may well be able to come up with some clue. Itā€™s hard from your brief description at this stage to hazard a guess so I suggest you have a good read of the Welcome and Wiki sections for symptoms etc and see how yours compare. If the vertigo hitting you as you lay down to sleep is your only symptom currently Iā€™d have to ask if youā€™ve been tested for BPPV because that would be what it sounds like to me. Have doctors tried the Epley manoeuvre on you. However My MAV started out just like BPPV. MAV changes, evolves as time passes, doesnā€™t stand still. Most vestibular illnesses follow patterns so writing a detailed medical history is often used as a main diagnostic tool. Have you ever had head, ear, neck trauma, a car crash maybe. Do you have a history of migraine, or do others in your close family maybe. Fill us in with bit more detail and Iā€™m sure somebody may come up with something that helps.

On a more personal note Iā€™ve one female friend diagnosed with BPPV many years ago who has actually your symptoms, no others, no trauma, no migraine history. She just gets vertigo when she lays down to sleep. I know she can guarantee it every time if she lies completely flat. She always sleeps raised up on several pillows. I think she still gets it but not everytime by doing that. I do know sheā€™s had it all her adult life and recently had to change hospitals in order to have cataracts removed because most insist you lie flat for the operation which, as you are awake throughout, she knew she would unable to do. Helen

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In my research Iā€™ve found that there seems to be a lot of vertigo research taking place in Germany. I suggest you try to contact one of these specialists who are doing research and see whether any of them see patients. If you arenā€™t able to see one of them, perhaps they can suggest a specialist for you.

Michael Strupp, MD, FANA
michael.strupp@med.uni-muenchen.de
Professor of Neurology
Dept. of Neurology and German Center for Vertigo and Balance Disorders
Ludwig-Maximilians-University Hospital Munich,Campus GroƟhadern
Marchioninistr. 15, 81377 Munich, Germany
Tel. ++ 49 89 4400-73678
Fax ++ 49 89 4400-76673

Marianne Dieterich, MD
Marianne.dieterich@med.uni-muenchen.de
Dept. of Neurology and German Center for Vertigo and Balance Disorders
Ludwig-Maximilians-University Hospital Munich,Campus GroƟhadern

Thomas Brandt, MD
Dept. of Neurology and German Center for Vertigo and Balance Disorders
Ludwig-Maximilians-University Hospital Munich,Campus GroƟhadern

Katharina Hufner
Katharina.huefner@med.uni-muenchen.de
Dept. of Neurology and German Center for Vertigo and Balance Disorders
Ludwig-Maximilians-University Hospital Munich,Campus GroƟhadern

Prof. T. Lempert, MD
Dept. of Neurology
Schlosspark-Klinik
Heubnerweg 2
14059 Berlin, Germany
Tel.: +49-30/3264-1152
E-Mail: thomas.lempert@schlosspark-klinik.de
and
Vestibular Research Group
Charite, Berlin, Germany

Dr. H. Neuhauser, MD, MPH
Robert Koch Institut
Dept. of Epidemiology
General Pape Str. 62ā€“66
12101 Berlin, Germany
Tel.: +49-30/4547-3462
E-Mail: neuhauserh@rki.de
and
Vestibular Research Group
Charite, Berlin, Germany

Christoph Best
Department of Neurology, Vestibular Research Unit
Philipps-University,
Baldingerstrasse, Marburg 35043, Germany
bestc@uni-marburg.de

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Anna,

You are the best!!

Em

5

Or just the most obsessedā€¦ :slight_smile:

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