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pgfairy

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Posts: 2
Reply with quote  #1 
Hi all, 

I have very recently been diagnosed (well sort of) with Trigeminal Neuralgia accompanied by Hyperacusis. I suffer from partial numbness (but no paralysis) in my face, excruciating pain in my jaw and ears and regular headaches brought on by sensitivity to noise. So far I have had to alter my work environment to reduce the background noise levels I am subjected to as the air handling alone in the building I worked in, let alone the hustle and bustle of my colleagues all day in our open office area, was sending me home to lie in a dark room for the next day or two with a splitting headache.

I consider myself to be fairly fortunate, as this only started to be an issue in around October 2014, I saw an ENT at the end of December and have an appointment with a Tinnitus and Hyperacusis clinic in March.  

I am very confident in the TN diagnosis to spite a lack of testing as I recently got a coldsore on my lip. I've suffered with these my whole life but this one was more painful than anything I have ever experienced. Anyone ever been shot with buckshot? It felt like that in my jaw, every few minutes for almost two weeks. 

I have good days and bad days with the pain in my face, jaw and ears and I have tried really really hard not to let the hyperacusis stop me from doing things as I have never really felt like the pain caused was doing damage to the condition, it just hurts a lot it doesn't seem to make it any better or worse. 

To complicate my issue my ENT refused to offer any kind of diagnostic test or therapy as I am also currently 18 weeks pregnant. I am completely confident that the pregnancy is not the cause of the TN as the TN started weeks before I could possibly have even conceived but I have to tell you being pregnant with untreated TN and hyperacusis has been totally soul destroying. 

If anyone is reading this I would really like to know what my options might be for diagnosis and treatment of the TN that are safe for me and my child, and whether the sound therapy options are worth pursuing for the hyperacusis if the cause is something to do with nerve issues in the face and ear without actually addressing the cause? My biggest fear right now is that my child is going to be born and I'm not going to be able to be in the same room when it cries without being in excruciating pain.  So some examples of how long it's taken the sound therapy or other therapies to work for others would also be really helpful to me.

Any advice that anyone can offer on questions to ask at the clinic in March, and things to look out for would also be incredibly gratefully received. 

Wishing you all health and happiness and thank you for taking the time to read my story so far.

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Cheryl_K

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Posts: 101
Reply with quote  #2 
Hi Pq,

I just read your post today. Sometimes they come and go very fast. I like the new listing of topics. That's how I got to read yours.

I've been working through my T and H for many years now. My situation is different than yours. I am older, my kids are grown, and they come out to take care of me when they can. I feel that taking special care, gradually getting used to sounds, and my physical recovery from injuries (accidents) has helped.

I just wanted to say hi, and acknowledge your post. I have no idea how to advise you, but would like to just encourage you to take good care of yourself, and find the types of professional help that resonate well with your needs. There are so many opinions and approaches out there, sometimes you just need to tune into your body and only accept what seems appropriate for you.

Don't be afraid to get more than one professional opinion. Rest as much as you can. If something is painful for you, gradually and incrementally re-introduce each sound, one at a time.

Good luck to you. I hope that your healing journey is a short one.

Best,
Cheryl
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DanMalcore

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Dan
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Posts: 1,456
Reply with quote  #3 
In view of your location you are very close to this clinic which is one of the best in the world for treating hyperacusis.  You will receive excellent care

Jacqui Sheldrake
Tinnitus and Hyperacusis Centre
32 Devonshire Place
London W1G 6JL
United Kingdom
44 207 487 2701 tel
44 207 486 2218 fax
j.sheldrake@ucl.ac.uk 
tamia@audiology.fsnet.co.uk  
http://www.tinnitus.org

[wave]Dan


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