Carbamazepine (TEGRETOL) and Topiramate (TOPAMAX)

[Sheffred]

I have had tinnitus for over 50 years. I have a ringing type in one ear continuously and a buzzing type from time to time in my other ear. That pattern is unchanged for all those years.

I’ve never found anything that helps with the ringing (other than a masker) but I do have success with Carbamazepine (Tegretol) - 3 x 200mg tablets with the buzzing as it stops it within an hour. Unfortunately I often get bad headaches from taking the Tegretol.

I have read research that says that Tegretol does not work and is no better than a placebo - well it works for me and has done for many many years - but only for the buzzing.

I’ve been told that Topiramate (Topamax) might be better than Tegretol for my buzzing as it has less side effects. But I’m loath to try it as I know with certainty that Tegretol works.

Does anyone have any comparative tinnitus experience with Tegretol and Topiramate?

[TinnitusUKPat Partner]

These both appear to be medications primarily for the relief of epilepsy and migraine, Sheffred. If they are prescribed for that purpose, then I would guess that temporary relief from tinnitus is an unexpected bonus (the BNF/NICE listing for this medication does suggest that tinnitus is a rare side effect of Carbamazepine - bnf.nice.org.uk/drugs/carba....

[Higgsy45 in reply to TinnitusUKPat]

I had a conversation with a Professor called Dirk De Ridder. He is a tinnitus researcher and clinician. He pointed out that just like in migraines you may have to try several to find one that benefits. He said in general it's best to use a low dose cocktail. When I brought up studies he said there are many medications that are effective for many people. The issue is the placebo grp in tinnitus is typically large and 40% +. Therefore if 20% get a big benefit from a medication then it wont beat placebo and the wrong conclusions are drawn and the community suffer. A classic example is Gabapentin. The 2nd issue is lumping everyone with chronic tinnitus into one group, regardless of the cause. So you have Meniere's, Vestibular neuritis, Labyrinthitis, Acoustic trauma, head injury, idiopathic, age related etc. Different subgroups respond better to different treatments. Again look at Gabapentin again and the 2017 study which showed a good response, despite the high placebo. And it works for my noise induced tinnitus just like in the study. Yet on tinnitus uk it's not recommended. We really really need to look deeper. I feel we are going backwards in this country with the condition. Be interested in your thoughts. Also Clonazepam is not even reviewed despite being prescribed in Harley Street. People talk, we are a global community now.

[surviveT in reply to Higgsy45]

hi Higgsy - is it possible i can get Gabpentin prescription in UK from ENT ? the NHS Neurologist I was in contact with wont prescribe anything for me even though i have rare, reactive very severe T which just keeps getting worse and more intense . My life has become very restricted because of this reactive T and often have difficult thoughts that i cant go on - I would just like to try the Gabepentin to see if it works a bit

[Higgsy45 in reply to surviveT]

Its hit and miss. Some will and some will not. Are you getting CBT with an audiologist as there is evidence it helps with distress and is the only treatment recommended on the Tinnitus UK website?

[surviveT in reply to Higgsy45]

I am doing CBT for Tinnitus with Debbie Featherstone but thinkmy T i just too severe for this to have much effect . My T changes every month or so coz of noise incidents - last one was when i went into a small shop with music without my ear plugs and ear defenders just for about 10 seconds - this has made it more higher pitched , intense and piercing. I think in US and Frnce and Europe the docs are willing to try different medications for very severe cases , its just not happening here.

[Higgsy45 in reply to surviveT]

There are side effects to some medications but I would be happier under the care of a maverick. Like you I'm struggling like fcuk. Only thing that is effective is Clonazepam and sometimes Gabapentin. The former has issues with dependence if taken regularly. I bought online. We have to help ourselves. Did you get CBT through the health service? I've begged but its not available. Terrible times for the community and I generally feel for you. Stay strong!

[surviveT in reply to Higgsy45]

I was referred by NHS Audiology to Psycholtherapy services and never heard from them . The CBT for T is online at various prices , I paid £175 , and there is a discount as a member of BTA ( which i realised after , as i could hv purchsed for 150). NHS psychotherapy would not match this specific CBT course for T

debbiefeatherstone.com/

there are forms to fill out initially and at points along the course - but the daily reports i dont do , and I have all the 12 week info and can work through at my own pace. There are consultations with Debbie F if someone feels they need this ( at extra cost). It s abit tedious at times and lots of psychotherapy theory to read , but u dont have to plough through all that

[Higgsy45 in reply to surviveT]

That's a lot of money when your disabled with a severe case. How effective has it been? I realised I was not going to get any help in the UK and bought online. I'm not giving medical advice, it's just what I did. You need to be aware of medication interactions and potential side effects. Cyclobenzaprine is recommended for people with somatic and pure tone tinnitus. This is an open label study pubmed.ncbi.nlm.nih.gov/225...

It is not available in the UK, but can be imported with a prescription. I have not tried it.

You could get an online consultation with Dirk De Ridder for £78. Problem being your prescription may be refused. He is having a lot of issues with patients in the UK. It is hoped that the growing presence and prominence of the European wide Tinnitus Research Initistive will drag us into the 21st century. I showed him the patient guidelines here where it says 'if tinnitus is ''causing'' you hearing loss see an audiologist. ' He wasnt impressed to say the least.

[surviveT in reply to Higgsy45]

I contacted the Brai3n clinic last October and they told me i need to attend in person at clinic as they need to do a QEEG test. I contacted them again this week and said i cannot travel and they said the same, that i wouldneed to attend - so i cant really get an app with Dr Ridder

[AldoArgentina]

I'm happy to read you. I will try Tegretol for my tinnitus, no matter what doctors say. They don't understand our suffering. I have had T for 3 years, with days high and others low enough to have almost normal days. And I don't understand why T change that much. Doctors who say "stress" do not have an idea what are saying. This happen to you too?

[Higgsy45 in reply to AldoArgentina]

Gabapentin is effective for me. Noise induced tinnitus

[surviveT in reply to Higgsy45]

hi Higgsy - can i ask who prescribed the Gabapentin for you ? NHS GP or private consultant?? Here in UK??

[DiegoDiegales]

Good that you found something that works for you, I will try it too. How many days did it take for it to work? did you start with lower dosis?

[Higgsy45]

What we are seeing is the response to treatments of sub groups. There is a need for tinnitus research to focus on sub groups. Can I ask how you got your tinnitus and if you have hearing loss?

[Higgsy45]

Thanks for this. Things like this really help the community. Do you know what caused your tinnitus and how on earth did you get this prescribed in the UK?

Regards

Nick