Is It True Some Members Cured Their Reactive Tinnitus with Keppra or Other Seizure Medications?

L

Layla23

Member
Author
Apr 11, 2018
112
Tinnitus Since
May 2017
Cause of Tinnitus
Bars/nightclubs/MRI
#1
Is it true some members here cured their reactive tinnitus and hyperacusis with Keppra and/or other seizure medications?

My neurologist prescribed it to me but I don't have insurance. So it's $800 for one bottle. I don't have that kind of money at all.

I'm hesitant to sell my possessions for it if it's going to cause more problems.

My visual snow is finally sort of going away. But I heard a member got visual snow specifically from Trobalt. So I guess I'm very conflicted.

I read a study that seizure medications can help visual snow and tinnitus but that it can also ruin things more. Thoughts?

My tinnitus and hyperacusis are out of control. TRT helped a little but not enough to make life liveable. Any advice?

All the best,

Layla
 
#2
Did you really pay for TRT without insurance?
 
#3
Layla23 said:
Is it true some members here cured their reactive tinnitus and hyperacusis with Keppra and/or other seizure medications?

My neurologist prescribed it to me but I don't have insurance. So it's $800 for one bottle. I don't have that kind of money at all.

I'm hesitant to sell my possessions for it if it's going to cause more problems.

My visual snow is finally sort of going away. But I heard a member got visual snow specifically from Trobalt. So I guess I'm very conflicted.

I read a study that seizure medications can help visual snow and tinnitus but that it can also ruin things more. Thoughts?

My tinnitus and hyperacusis are out of control. TRT helped a little but not enough to make life liveable. Any advice?

All the best,

Layla
Click to expand...
I have only spoken to one person (but know of another) who used Keppra successfully to treat hyperacusis (Danny).

Pretty sure there are threads on here about it.
 
#5
From my understanding Trobalt helped Danny's tinnitus tremendously but it also caused visual snow and was the reason why he ended his life. I think stem cells would be safer.
 
#6
DebInAustralia said:
I have only spoken to one person (but know of another) who used Keppra successfully to treat hyperacusis (Danny).

Pretty sure there are threads on here about it.
Click to expand...
Danny (rest his soul) got horrible eye issues and visual snow from it though.
 
#7
another sean said:
From my understanding Trobalt helped Danny's tinnitus tremendously but it also caused visual snow and was the reason why he ended his life. I think stem cells would be safer.
Click to expand...
Danny didn't kill himself. An autopsy ruled that out.
 
#12
another sean said:
@TheDanishGirl ok, I was waiting for the autopsy results, I didn't know they were shared. How did he die then?
Click to expand...
@Markku shared this message on the last page of the thread "In Loving Memory of Danny Boy"

"Update on Daniel's cause of death

In the final post mortem carried out on Daniel, the cause of death was ruled as "adult sudden unexpected death syndrome" - the coroner wasn't able to ascertain the cause of death further than that.

Our thoughts remain with Daniel's family and friends, and those who knew him"​
 
#13
So is this a no? With the trigeminal pain from my TTTS and the fluttering sometimes sounding like "typewriter" or morse code tinnitus, I was considering trying carbamazepine. Or Lyrica, since some on H-chat said they found it reduced their H some. I don't know what it is about antidepressants but they just destroy my head when I try taking them, happens to everyone in my family. But one dose of Gabapentin got rid of all of my tinnitus for an hour or two, before starting a new hissing sound inside my head. Been too scared to take it again ever since but I'm getting REALLY desperate now to find a way to get my H to recede just a bit so maybe I can even tolerate broadband noise/sound therapy.

Don't want to make things worse though if nobody has gotten any good results from anticonvulsants for H.
 
#14
Sorry for not speaking up sooner but I've been taking Keppra off and on for three years now. I don't have what I understand to be typical pain hyperacusis but my tinnitus is reactive and there have been enough signs that Keppra has a positive effect that I'm still taking it three years later. It's difficult to say though because my tinnitus can fluctuate a lot on its own. There was a period of about a year where I was doing well enough that I didn't feel the need to take it, but I had another sound exposure and things got worse again. I normally take it for 2 - 3 months and then taper off it for a while just to monitor how things are going without it.

For example a few months ago I wasn't taking it and I had to stay up all night to take my car in for service, and to my surprise I had a serious spike for about a week, apparently just from the stress and lack of sleep. Currently I've been on it for about 10 weeks and right now I'm losing my mind from grief because my cat that I loved more than anything just died and I'm only sleeping 2 or 3 hours a night but somehow the tinnitus is still pretty livable.

Anyone interested in trying it, I'd recommend reading through the two big topics on it in this forum and in the research news forum if you haven't already. I wouldn't necessarily expect it to be a cure, just something that could possibly help a little by making symptoms less severe. Some people in those topics did seem to have adverse effects. Personally my only seriously negative experience was withdrawal but I discovered the effects could mostly be mitigated by tapering off very slowly and taking the second daily dose at least 4 hours before bed. I do a lot of dosage adjustment. At most I take 250 mg twice a day since for me higher than that seemed to cause side effects, and I usually try to taper to 125 mg twice a day and stay there for most of the time I'm on it.

I'll quote Viking's 2015 post about neurologist Nicola Rao's Keppra experimentation, which was a big part of the reason I decided to try it.

Viking said:
Small update;
the doctor who prescribed the Keppra on me in december of past year, it being administered to patients who had previously received some relief from the combination of gabapentin + clonazepam. The results seem to be encouraging, especially in the group of patients who suffer from tinnitus unilateral not tonal but white noise, narrowband noise linked with Misophonia or hyperacusis. After 3 months of testing, the maximum dosage of 2000mg per day were obtained the following results:
1) Reduction of tinnitus NOT TONAL from 6 to 3. Disappearance of "tinnitus reactivity". Disappearance of Misophonia (FULL).
Drastic reduction of the headaches associated with iperacusia.The patients have improvement in mood and in their ability to react to their situation of suffering. 2 persons have abandoned the use of SSRIs and are climbing out the use of benzodiazepines.
2) If the tinnitus is tonal, no relevant difference. (not lucky people)
3) If there are hyperacusis or Misophonia, after a month of treatment, the symptoms begin to weigh less on quality of life.
4) In patients who did not obtain benefits, was prescribed the Flexiban (Flexeril ... always cyclobenzaprine), with good results on tinnitus tonal, general tension, hyperacusis and headaches. It is noted that these patients have problems related to the neck or jaw or to the structure of the dental arches. Very common side effects that lead patients to abandon the following therapy are excessive sedation or tachycardia. Flexiban has a structure similar to Tegretol. Both are "cousins" of tricyclic antidepressants such as amitriptyline or nortriptyline that already in the past have been shown to have some efficacy in the tensive states, headaches or migraine, hyperacusis, generalized anxiety.
It is hoped that these results are permanent, in view of a future development of Biviracetam (enhanced version of Levetiracetam x10) who @Danny Boy is most active in the research, the suffers may have some help with a drug already tested and without serious side effects, avalaibilty and low price.

Best wishes
Click to expand...

@Layla23 I don't know if that's name brand Keppra or generic levetiracetam but that's awful if your only option is to pay $800 to fill one prescription. With insurance I pay something like $3 for 60 250 mg levetiracetam tablets, but then again $800 is less than two months worth of my insurance premiums.
 
#15
Regarding Keppra, I have mixed feelings about it. I have trialed it and it might have introduced new sounds but, on the other hand, it did quite a bit with my mood. It also gave the feeling of the tinnitus moving further away, and not being as reactive, along with improving my hyperacusis. But since I stopped taking Keppra, things are basically back to the same.

We are all different but I would make sure that if you try it, follow the dosage regime and make sure you have a doctor with you on it. Also take regular blood work since it metabolizes through the liver.
 
#18
Layla23 said:
Is it true some members here cured their reactive tinnitus and hyperacusis with Keppra and/or other seizure medications?

My neurologist prescribed it to me but I don't have insurance. So it's $800 for one bottle. I don't have that kind of money at all.

I'm hesitant to sell my possessions for it if it's going to cause more problems.

My visual snow is finally sort of going away. But I heard a member got visual snow specifically from Trobalt. So I guess I'm very conflicted.

I read a study that seizure medications can help visual snow and tinnitus but that it can also ruin things more. Thoughts?

My tinnitus and hyperacusis are out of control. TRT helped a little but not enough to make life liveable. Any advice?

All the best,

Layla
Click to expand...

Did you end up trying Keppra or any other drug?
 
#21
One has to be careful with strong medication. Some drugs may have side effects in the long run, and cannot cure hyperacusis anyway.
 
#23
I think it's important to bring some scientific facts into this discussion. Antiseizure drugs, such as Keppra, have not been shown in published research to cure or even treat tinnitus. Every so often, a new antiseizure drug or one that is not generally available (like Trobalt) gets a groundswell of support and people are tempted to try and obtain this medication through any means. To date, disappointment has been universal.

The problem is that antiseizure drugs have a lot nonspecific effects in the brain. Antiseizure drugs (such as gabapentin, pregabelin (Lyrica), lamotrigine ( Lamictal) and topiramate (Topamax)) have off-label use in chronic pain, mood disorders and anxiety. It is therefore not surprising that one or more of these medications may have some impact, transient or otherwise, on how an individual perceives the severity and/or volume of the tinnitus. That does not mean that these medications do not have a place but, as I have said many times I will continue to do so, expectations must be realistic.
 
#24
Dr. Ancill said:
I think it's important to bring some scientific facts into this discussion. Antiseizure drugs, such as Keppra, have not been shown in published research to cure or even treat tinnitus. Every so often, a new antiseizure drug or one that is not generally available (like Trobalt) gets a groundswell of support and people are tempted to try and obtain this medication through any means. To date, disappointment has been universal.
Click to expand...

This relates to Hyperacusis in particular: There is basically no research. There is are some CBT studies and low quality sound therapy/TRT studies.

There are anecdotal reports of ADs and Anti-seizure drugs that help sufferers. These drugs are sometimes used in clinics where the doctor has experience of H patients. As far as I know there is no study proving efficiency, but importantly, no studies that disprove them either.

One can choose to wait and wait and wait and wait and wait until there are high quality RCT studies proving that these drugs work or don't work for H patients, or one can take the risk of side effects and try them now.

Example of a treatment protocol for H, by Dr Hain, Professor Emeritus of Northwestern University:
http://dizziness-and-balance.com/disorders/hearing/hyperacusis.htm

hyperacusis%20management.jpg
 
#25
DebInAustralia said:
I have only spoken to one person (but know of another) who used Keppra successfully to treat hyperacusis (Danny).

Pretty sure there are threads on here about it.
Click to expand...
Danny was not the only one. There was Viking, but he was a gang member who went nuts, changed his nickname to MIA and yeah, well, no one can trust what he says.
 
#26
Marko Nakovski said:
@Juan Maybe not cure it completely but improve it a little bit? What do you think?
Click to expand...

I think genuine hyperacusis and tinnitus cannot be fixed and do not improve with medication. They evolve with time, some days one feels better, other days worse. But there are no meds and no treatment to fix them.
 
#27
Most anti seizure meds are known to cause tinnitus. And studies show they aren't effective in treating tinnitus. I tried one... It made my tinnitus permanently worse.

Never tried Trobalt.
 

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