I'm Really Struggling, Sorry Everyone

[Louise]

hi Louise

I know it sounds daft - like fighting an elephant with a feather... but

have you tried eliminating any foods to see if they're making the T worse or even just keeping it at the same level?

I ate something with sodium nitrate in it the other day (something I don't usually eat!) & my T went from a whisper to an almighty scream. It's spiked before with tea but this one really made me think.

If there are foods that contain stuff that aggravate it then perhaps eliminating all foods containing the aggravators will bring the volume of the T right down?

Perhaps eating them every day keeps it going - feeds the T?

I suppose I didn't think about it much before because salt / stress etc. doesn't have an effect on mine although MSG did - or so I thought. I had a really stressful day earlier this week - T stayed nice and low.. no stress at all today and it's hissing more loudly.

It's really hard to figure out what does aggravate it tho.

Seems that spinach, lettuce, mung beans all contain loads of nitrates. Carrots are high in it too. I eat loads of all of these. Maybe my meal which also had carrots made the nitrate level really high. Organic versions contain slightly less but still there. Boiling your water increases the nitrates. Nitrates are a confirmed link with migraines (& migraines are in the same place as my T).

Yesterday I reduced my amount of nitrate intake & it hasn't worked because it's louder today. But I'm suspecting the fact that I boiled mineral water this morning to make cappaccino. I did this because volvic has a lower level of nitrates than tap water.. but I have no idea how much boiling increases the nitrate level.

Of course it could be a different mineral that made mine spike. I'm now suspecting calcium.. because I once took calcium tablets and they made my head totally foggy...

and then again.. this may all be as effective as waving a feather

Hi Click,

No I havent tried anything diet related really. Mainly because my T is through noise damage so excluding foods I've always eaten and that never previously caused a problem doesnt seem a likely solution. Although having said that my ears are different now, excitotoxicity and oxidative damage and all that. So its quite feasible that something would affect them adversely now that previously didnt bother them.

The T doesnt go up and down either like you might expect if you'd irritated it by foods, it goes worse, and then worse and then worse. No back-sliding with my T

My head is swirling with all the research on things that might help and I dont feel able to make sense of much at the moment. I will look into Glutamate & Nitrates at some point soon though.

x

 

[Louise]

I really feel for all of you... I wish I could help somehow because I also went through this. We really need a cure that would make us all tinnitus-free...

For all of you who haven't tried I would advise you to ask your ENT doctor for betahistine. It's brand name is Betaserc but it is too expensive for me so I buy a generic alternative drug called Vestibo.

Betahistine is a fairly safe drug with little side-effects (bloating, nausea etc.) that improves blood circulation in the middle ear. It is being used for meniere's disease, but one of the greatest ENT doctors in my country who does a lot research in tinnitus field found it to be effective for tinnitus too. You need to take it for at least 2-3 months to feel any effect.

I have been taking betahistine for quite some time now and I swear I am much better. It is either betahistine or something else that helps me but why not give it a chance. There is not much we can try anyway is there.

I saw something you'd written about Bethistine earlier Fish and have written it on my list for the doctors on Monday. Its there algon with; Xanax, Clonazepam, Lorazepam and Remeron. I really didnt want to go the drugs route but I'm just not coping.

 

[erik]

Louise, there is nothing wrong with getting some help when you need it. Most of us here have done the same thing. The drugs you mentioned above have proven helpful to many with T and I, on occasion, have used both Xanax and Lorazepam. You have to break the cycle to improve in how you deal and cope with T.

 

[Louise]

Thanks Erik, that's really comforting. My fear is it wont end up being temporary though and I dont want to be reliant or hooked on meds. Its for me to ensure that doesnt happen though.

 

[erik]

Hi Louise. Yes, there is a risk of dependency but that is only after prolonged use. Short term, you'll be fine. Most of the horror stories you read online about addiction to these drugs are only the small fraction of the millions that use them successfully and safely under the supervision of their doctors. Benzo drugs like Clonzepam, lorazepan, xanax etc were only intended to be used short term. You can build up a tolerance to them where they become less effective and you either have to switch to something else or up the dose.

 

[click]

My GP said that betahistine didn't really have any side effects Louise, apart from decreasing appetite - some women are prescribed it to lose weight apparently. Were you offered it? It seems standard for T in the UK alongside the GP looking at you as though you're mad (well mine did anyway!).

As for the food thing. I just think that if food can aggravate it then maybe.. just maybe... a certain diet can also reduce it. Maybe one day I'll actually know if it can

 

[Louise]

My GPs know nothing about T Jane. The first one literally told me there was nothing I could do. Betahistine is on the list for my Monday app anyway.

 

[click]

Mine gave me betahistine, a steroid nasal spray and anti biotics but I don't think she knew anything about T - I think she was just following instructions from a book. Maybe I was being unfair to her then - if yours gave you nothing. I believe I'm right in saying that, if requested, they have to refer you to a tinnitus specialist too Louise... not just an ENT. This was something someone told me. A friend of mine has had T for over 20 years and she was given a hearing aid which had a masking noise generator built in - on the NHS. She said it hurt her ear so she doesn't use it.

You have to push them though - don't you think so... to get the stuff we have a right to. With so many people having T you'd think GPs would be more geared up to treatment options & also give a more reassuring first appointment. Mine was dreadful - made me feel worse!

 

[Louise]

This is what I got from the NHS Jane.....

The female Doctor said "It might go and if it doesnt there is nothing you can do about it. Tune a radio off station" as I was breaking down in her office.

The Audiologist said "Its in your head" in reply to my question about where is it coming from if my hearing is 'good'. (My hearing is not 'good' by the way I do have hearing loss).

I went to another doctor and got a referral to ENT. From the ENT guy I got a referral to a Tinnitus Specialist (which I could have asked for on day 1 if I had known they exist in the NHS).

I waited for my appointment to come through, the letter went out in September, and in desperation today rang the hospital. They have never received the referral. This got faxed over and I have an app with someone on 7th Dec.

In between this I did see another doctor and asked for Amitriptyline which he gave me. I wont take it as it lists 'ringing in the ears' as a side effect! He also booked me another hearing test with the first audiologist to check if the theatre had caused more hearing loss (it didnt). I think this doctor will be more supportive and its him I'm going to see with my drugs list, which will include Betahistine.

 

[Karl]

Louise -
I've read there are actually very few ototoxic drugs. Certain antibiotics are very dangerous. I was at an ATA support group on Saturday and I met a young man who in 2000 was given an antibiotic that saved his life, but it caused him to have terrible tinnitus. Very sad story.

When a medicine says "may cause ringing in ears", like Amitripytyline, it's usually temporary. Aspirin, certain SSRI's like Zoloft, can cause temporary ringing in the ears.

On the flip side, these same drugs like Amitriptyline can reduce tinnitus. Same with Zoloft - it can make people cope better. This guy Kevin Hogan said that he's able to eliminate tinnitus using drugs like Clonezapam and Zoloft.

Also keep in mind, you did not get tinnitus from an ototoxic drug, you got it from loud music.

On another subject: I think you wrote somewhere that maskers are not a good thing. I can't find that quote. Why do think maskers are not a good thing?

 

[Louise]

Thanks Karl. If the ringing is temporary then fair enough I suppose, though I'd rather not have the possibility of that.
Clonazepam is number 1 on the list for my doctor.
There are certain antibiotics they give to Menieres people to purposely destroy the inner ear.

Yes, I wrote that total masking (where you cant hear the tinnitus at all) is bad. We all know you have to be able to hear tinnitus to habituate it. Another reason as well may be that if your brain is seeing the T as a threat it wants to monitor it and if you can hear it then it may turn it up to monitor it. I need to check that second thing with the Hearing Specialist tomorrow. I didnt mean that proper sound enrichment where it just under the level of the T is a problem.

 

[Youllbefine]

It would be interesting and useful to formulate a questionnaire on both the psychology of members on this site and their overall dietary intake. There must be a common denominator.

 

[click]

It would be interesting and useful to formulate a questionnaire on both the psychology of members on this site and their overall dietary intake. There must be a common denominator.

We're looking for common denominators - not precisely psychology & diet... but still worthwhile

Please fill in the spreadhseet Youllbefine:

http://www.netdoodles.co.uk/tinnitus.html

 

[Polar-Bear]

I think you wrote somewhere that maskers are not a good thing. I can't find that quote. Why do think maskers are not a good thing?

I'm interested in hearing more about this, as I just bought a noise generator yesterday. Could it be that it stops one from habiting to there inner sounds?

I was at the Doctors last thursday and he prescribed me antibiotics for a possible infection in my eustachian tubes. I asked him if this could worsen my T and he said "no". I looked up the side effects and the first thing mentioned is hearing loss and T. All I could think was what a tard!