MemberNot to mention many people take far less than the recommended dosage, don't see anything happening and quickly discard the drug.
Levetiracetam (Keppra) Worked for My Hyperacusis
- Thread starter Danny Boy
- Start date
Not to mention many people take far less than the recommended dosage, don't see anything happening and quickly discard the drug.
@Danny Boy I have been watching this thread with great interest for some time now. And I have appreciated your enthusiasm for Keppra.
I was delighted to read that you are doing better @skoupidis -- all of the variables you mention could be playing a role in your improvement! Keppra being one of them. Before my surgeries, running five miles daily followed by an hour of Yoga greatly decreased my symptoms -- maybe similar effect from your swimming. You are under a year with your symptoms, so the passage of time does help certain kinds of T & H, and the weather can affect some people's symptoms. What a great combination of variables working in your favor. I am so glad that you are feeling better!
I also want to chime in that I, too, have been on Keppra, and I have noticed a distinct reduction in my hyperacusis, which I had for a year and a half. I live on an island, and I used to have to avoid all of the screaming children on the ferries like the plague. Today, I was on the ferry helping screaming children wash their hands in the restroom! Something I could not have done before I began treatment with Keppra. My hyperacusis was so bad that I would spend the entire ferry ride in the car, while my husband went above decks and enjoyed the salt air and a cup of coffee. Today, because I was able to be above decks, I got to see a pod of Orca whales frolicking alongside the boat, something I would have missed before because of extreme hyperacusis.
One point I would like to add to this thread is that the dosage of Keppra might very well depend upon a person's size. I am a small person who weighs 120 pounds, with a small frame. The larger doses of Keppra caused side effects, and made my symptoms worse. I was ready to taper off of Keppra at that point. But I have a friend who is a neuropharmacologist who recommended a smaller dose of Keppra due to my slight frame. It seems to be doing the trick. The hyperacusis is decreased and the side effects are no longer a problem.
My husband is amazed at the difference in my hyperacusis. He no longer has to tiptoe around the house trying not to make any noises that will send me screaming into the other room. I can now watch movies that used to be too excruciatingly painful to listen to, and had my husband constantly turning down the sound.
Keppra might not be for everyone because of different etiologies of hyperacusis, but for me the experiment seems to be working at the moment. Keeping my fingers and toes crossed for everyone here.
I was delighted to read that you are doing better @skoupidis -- all of the variables you mention could be playing a role in your improvement! Keppra being one of them. Before my surgeries, running five miles daily followed by an hour of Yoga greatly decreased my symptoms -- maybe similar effect from your swimming. You are under a year with your symptoms, so the passage of time does help certain kinds of T & H, and the weather can affect some people's symptoms. What a great combination of variables working in your favor. I am so glad that you are feeling better!
I also want to chime in that I, too, have been on Keppra, and I have noticed a distinct reduction in my hyperacusis, which I had for a year and a half. I live on an island, and I used to have to avoid all of the screaming children on the ferries like the plague. Today, I was on the ferry helping screaming children wash their hands in the restroom! Something I could not have done before I began treatment with Keppra. My hyperacusis was so bad that I would spend the entire ferry ride in the car, while my husband went above decks and enjoyed the salt air and a cup of coffee. Today, because I was able to be above decks, I got to see a pod of Orca whales frolicking alongside the boat, something I would have missed before because of extreme hyperacusis.
One point I would like to add to this thread is that the dosage of Keppra might very well depend upon a person's size. I am a small person who weighs 120 pounds, with a small frame. The larger doses of Keppra caused side effects, and made my symptoms worse. I was ready to taper off of Keppra at that point. But I have a friend who is a neuropharmacologist who recommended a smaller dose of Keppra due to my slight frame. It seems to be doing the trick. The hyperacusis is decreased and the side effects are no longer a problem.
My husband is amazed at the difference in my hyperacusis. He no longer has to tiptoe around the house trying not to make any noises that will send me screaming into the other room. I can now watch movies that used to be too excruciatingly painful to listen to, and had my husband constantly turning down the sound.
Keppra might not be for everyone because of different etiologies of hyperacusis, but for me the experiment seems to be working at the moment. Keeping my fingers and toes crossed for everyone here.
Can you please provide some additional details? What dose did you start at, what did you change it to when you felt better effects. How long have you used it, do you still use it ? We're the effects lasting and did it affect t?
Thanks!
How long where you on it till you felt relief.. Im like you my H is very severe any drop in the floor in the house and ears catch it.. Even just talking
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
I will ask my doc to give me 2 mg for 7 days but that side effect back pain and nozzy are very serious for me, sleepy all day terrible
How much exactly does it improve it.. The gp that prescribed me potiga actually told me about this , but i just told i needed potiga..
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
@Rube and @Geo To answer your questions, I started on 500mg once a day, and went up to 500mg twice a day. Had terrible side effects at that dose, and was ready to bag it. My friend, who is a neuropharmacologist, recommended cutting the dose in half to see if the side effects diminished. I went to 250mg twice a day, and the side effects did diminish. It was a month before I experienced some relief.
I am still on Keppra, and it still seems to be effective for my hyperacusis. @Geo even just talking was difficult! As I stated before, I am not a big person. If you read the Keppra insert, it says that doses for children are based on weight. Perhaps it is the same for small adults. As usual, one size does not fit all, and it sometimes rarely fits two or three. I noticed that @skoupidis said he felt better decreasing to a lower dose too.
I am still on Keppra, and it still seems to be effective for my hyperacusis. @Geo even just talking was difficult! As I stated before, I am not a big person. If you read the Keppra insert, it says that doses for children are based on weight. Perhaps it is the same for small adults. As usual, one size does not fit all, and it sometimes rarely fits two or three. I noticed that @skoupidis said he felt better decreasing to a lower dose too.
i also was on it and from experiencing very bad ear aches that lasted a week i stopped after 3 weeks use i made it to 1500mg a day, like you stated it probably was the dosage. i might try it again but i also started potiga/trobalt but not sure about combining the two ...
Thanks for the response. Did it have any effect on t or just h?
Also what other side effects beside ear pain?
Sorry for the questions but I may try it. My h has improved quite a bit on its on but if it goes back I will just try it.
@Rube it is difficult to tell about my tinnitus right now. My tinnitus is a different animal, because it is from microvascular compression syndrome, and it is pulsatile. I had surgery in March to decompress my 7th and 8th cranial nerves from a vascular loop of the AICA. My nerve was actually being displaced by the artery. They also decompressed at the brain stem. My tinnitus was reduced by 80-90%.
However, the lead surgeon was indifferent, and the post surgical follow up was abysmal. I kept telling him that something was wrong, but he just dismissed me. I had complications that landed me in the Emergency Room, with an immediate hospital admission and a second emergency surgery.
I am still recovering from the second surgery -- both physically and psychologically. With all of the physical trauma to that area, it is difficult to tell about the tinnitus. Right now it ranges from a 50%-80% reduction at times. My hyperacusis is definitely better, and my friend who is a PhD neuropharmacologist is following my Keppra closely, along with my primary doctor. My doctor trusts my research abilities from my own PhD, so he really works with me.
Sorry I can't be of more help regarding tinnitus and Keppra. My new lead neurosurgeon, however, was pleased to hear I was taking Keppra, because he said it helps to calm nerves. Best of luck to you!
However, the lead surgeon was indifferent, and the post surgical follow up was abysmal. I kept telling him that something was wrong, but he just dismissed me. I had complications that landed me in the Emergency Room, with an immediate hospital admission and a second emergency surgery.
I am still recovering from the second surgery -- both physically and psychologically. With all of the physical trauma to that area, it is difficult to tell about the tinnitus. Right now it ranges from a 50%-80% reduction at times. My hyperacusis is definitely better, and my friend who is a PhD neuropharmacologist is following my Keppra closely, along with my primary doctor. My doctor trusts my research abilities from my own PhD, so he really works with me.
Sorry I can't be of more help regarding tinnitus and Keppra. My new lead neurosurgeon, however, was pleased to hear I was taking Keppra, because he said it helps to calm nerves. Best of luck to you!
- Dec 24, 2013
- 933
- Tinnitus Since
- (1956) > 1980 > 2006 > 2012 > (2015)
- Cause of Tinnitus
- Ac. Trauma & Ac.Trauma + Meds.
First up...I am going to now presume two things regarding KEPPRA THREADS:
1. That this, here, is the main thread for reporting on Keppra and its relationship to "Hyperacusis".
2. That this: https://www.tinnitustalk.com/thread...ible-potassium-channel-modulator.7295/page-11 is the main thread for reporting on Keppra and its relationship to "Tinnitus".
Clearly there will be some overlap, but hopefully, we will have more continuity in Keppra reporting than having it spread over numerous places (like in the: "On Retigabine" thread, etc.). I hope that meets with general approval, as I have had a tedious time trying to find it all...Thanks!
That said, I am now taking Keppra to assess for it's effects on my severe Hyparacusis (and Tinnitus of course). I started at 250 mg, twice...then immediately upped to 500 mg next day as had no "noticeable bad effects", which often happen right away.
In fact if I had any effect at all, it may have been a bit of a "Kv boost" (the 'upper' discovery with Retigabine, etc.?!) as I spent the afternoon pruning one of my trees instead of hiding under the bed-covers trying to nap my way through the afternoon. But too soon to tell.
With all due respect @svintegrity , reading what you said above regarding surgeries etc. I think I find it hard to get a fix on exactly what role the Keppra may have played, and be playing, in your 'situation'. Not saying it is not helping, but honestly...too many huge variables at work for me to feel comfortable drawing any conclusions. But as those who know me from "before" I trashed out, I am a bit of a stickler for "science/proof/hard controlled data".
Lastly here, and just for general interest, re Keppra and doses...
My doc friend knows someone (who I have known too, for over 30 years) who has had regular daily seizures, since an early age. One of the drugs this person is on, is Keppra. Plasma levels are checked regularly to assure that they are "within range" (aka...kidney/renal clearance primarily). Plasma levels are 'fine'.
Guess what the daily dose is?! = 5,0000 mg per day. Yep, 5 grams. And this person is non ambulatory, extremely handicapped, and not what one could call "a picture of health" by any means!
So as we know well by now, or should...Dose is very personal with many drugs, and the "brain/neuro" meds in particular IMHO.
Best, Zimichael
1. That this, here, is the main thread for reporting on Keppra and its relationship to "Hyperacusis".
2. That this: https://www.tinnitustalk.com/thread...ible-potassium-channel-modulator.7295/page-11 is the main thread for reporting on Keppra and its relationship to "Tinnitus".
Clearly there will be some overlap, but hopefully, we will have more continuity in Keppra reporting than having it spread over numerous places (like in the: "On Retigabine" thread, etc.). I hope that meets with general approval, as I have had a tedious time trying to find it all...Thanks!
That said, I am now taking Keppra to assess for it's effects on my severe Hyparacusis (and Tinnitus of course). I started at 250 mg, twice...then immediately upped to 500 mg next day as had no "noticeable bad effects", which often happen right away.
In fact if I had any effect at all, it may have been a bit of a "Kv boost" (the 'upper' discovery with Retigabine, etc.?!) as I spent the afternoon pruning one of my trees instead of hiding under the bed-covers trying to nap my way through the afternoon. But too soon to tell.
With all due respect @svintegrity , reading what you said above regarding surgeries etc. I think I find it hard to get a fix on exactly what role the Keppra may have played, and be playing, in your 'situation'. Not saying it is not helping, but honestly...too many huge variables at work for me to feel comfortable drawing any conclusions. But as those who know me from "before" I trashed out, I am a bit of a stickler for "science/proof/hard controlled data".
Lastly here, and just for general interest, re Keppra and doses...
My doc friend knows someone (who I have known too, for over 30 years) who has had regular daily seizures, since an early age. One of the drugs this person is on, is Keppra. Plasma levels are checked regularly to assure that they are "within range" (aka...kidney/renal clearance primarily). Plasma levels are 'fine'.
Guess what the daily dose is?! = 5,0000 mg per day. Yep, 5 grams. And this person is non ambulatory, extremely handicapped, and not what one could call "a picture of health" by any means!
So as we know well by now, or should...Dose is very personal with many drugs, and the "brain/neuro" meds in particular IMHO.
Best, Zimichael
The interaction potential of retigabine (ezogabine) with other antiepileptic drugs.
Tompson DJ, Crean CS1.
Author information
Abstract
BACKGROUND:
Retigabine is an antiepileptic drug (AED) that reduces neuronal excitability by enhancing neuronal KCNQ (Kv7) potassium channel activity.
METHODS:
This manuscript provides an overview of the drug-drug interaction potential of retigabine with other AEDs, using data collated from both in vitro work and clinical studies, either previously published or from relevant information collated during the development of retigabine.
RESULTS:
Retigabine is not a substrate for the major CYP enzymes and at clinically relevant concentrations there is little or no potential for retigabine to inhibit or induce the CYP enzymes or to inhibit the major renal drug transporters. The addition of retigabine to a range of existing AEDs showed little or no effect on the AED trough concentrations apart from a 20% decrease in lamotrigine concentrations. Results from a small phase II study showed that co-administration of valproic acid and topiramate had no impact on the PK of retigabine whereas carbamazepine and phenytoin increased the clearance of retigabine by approximately 27% and 36%, respectively. Conversely, a population PK analysis of combined data from phase I, II and III studies showed that none of the coadministered AEDs affected retigabine clearance apart from lamotrigine which lowered retigabine clearance by 6.7%.
CONCLUSION:
Retigabine is not metabolized by CYP isozymes and does not induce or inhibit these isozymes at clinically relevant concentrations. Therefore, retigabine is associated with a low potential for PK interactions with other drugs via CYP450. Overall, there was little or no potential for retigabine to interact with other available AEDs. Although some PK interactions were observed with lamotrigine, these are unlikely to be clinically relevant.
@Zimichael I appreciate your difficulty trying to get a "fix" regarding my "situation." It is a complex case for sure, and I have been living it for far too long. I, too, am a stickler for hard proof and controlled data, being a researcher and professor myself. However, I have found that with this affliction, anecdotal evidence is something that one cannot ignore. And often it is all you are going to get.
Before taking Keppra, nothing would touch my hyperacusis. It was severe all of the time. Even the sound therapies made it worse. I was skeptical that the Keppra was making a difference too, given the complexity of my case. So I went without it for 24 hours and had a resurgence of hyperacusis symptoms. Given the short half life of Keppra, I thought that it might have been suppressing the symptoms. My neuropharmacologist friend concurred.
Since being back on Keppra, my hyperacusis is stable, and my tinnitus is extremely fragile (fragility that I attribute to the surgeries). Of course, one size does not fit all, and there is not hard proof data here, or a clinical trial. However, I would not have posted on this thread if I thought Keppra did not have an effect on my hyperacusis. There is mostly anecdotal evidence on many of the threads on this Forum. People are sharing their experience, strength, and hope for others to take or leave as they wish. I have no problem with anyone discounting me, because of lack of hard proof. I am just sharing my experience.
But if I feel better, and it is not the Keppra, I would still take a placebo over hyperacusis any day of the week. My researcher friends, who know me well from being a reviewer for peer-reviewed journals for several decades cannot believe I am saying this. I guess it is hard for me to believe too. I look forward to hearing how Keppra works for you. Best of luck to you!
Before taking Keppra, nothing would touch my hyperacusis. It was severe all of the time. Even the sound therapies made it worse. I was skeptical that the Keppra was making a difference too, given the complexity of my case. So I went without it for 24 hours and had a resurgence of hyperacusis symptoms. Given the short half life of Keppra, I thought that it might have been suppressing the symptoms. My neuropharmacologist friend concurred.
Since being back on Keppra, my hyperacusis is stable, and my tinnitus is extremely fragile (fragility that I attribute to the surgeries). Of course, one size does not fit all, and there is not hard proof data here, or a clinical trial. However, I would not have posted on this thread if I thought Keppra did not have an effect on my hyperacusis. There is mostly anecdotal evidence on many of the threads on this Forum. People are sharing their experience, strength, and hope for others to take or leave as they wish. I have no problem with anyone discounting me, because of lack of hard proof. I am just sharing my experience.
But if I feel better, and it is not the Keppra, I would still take a placebo over hyperacusis any day of the week. My researcher friends, who know me well from being a reviewer for peer-reviewed journals for several decades cannot believe I am saying this. I guess it is hard for me to believe too. I look forward to hearing how Keppra works for you. Best of luck to you!
@Danny Boy Yes, I tried Keppra ER, but it is difficult to titrate the dose with ER meds. and they have a tendency to build up in my system. My neuropharmacologist said that I would get a more consistent dose taking regular Keppra at the appropriate intervals, and it seems to be working. Thanks!
Glad it's working for your hyperacusis...Most people gave me a lot of stick for recommending it.
@Danny Boy I know that people have given you a hard time for recommending Keppra, and I have felt bad about that. You definitely do not deserve it. I would definitely recommend Keppra to people suffering from hyperacusis too. It is definitely worth a try, rather than continuing to suffer. If it doesn't work, nothing lost. If it works, you hit the jackpot. Like I said above, I will take a placebo any day of the week over hyperacusis. I do not need hard evidence if I feel better, I feel better!
I am convinced Keppra is what is helping my hyperacusis, as is my husband. I can be around sounds now that we're intolerable before Keppra, which is why when I was experiencing the side effects, I still did not want to go off of it and lose the benefits. That is when changing the dose helped. My neuropharmacologist, who has been a researcher in the field for over 30 years is fascinated by Keppra and its effects on my hyperacusis. He recommended it to me. He said it is one of the safest AEDs. I relayed to him what I had read about your experience with it too. Thanks!
I am convinced Keppra is what is helping my hyperacusis, as is my husband. I can be around sounds now that we're intolerable before Keppra, which is why when I was experiencing the side effects, I still did not want to go off of it and lose the benefits. That is when changing the dose helped. My neuropharmacologist, who has been a researcher in the field for over 30 years is fascinated by Keppra and its effects on my hyperacusis. He recommended it to me. He said it is one of the safest AEDs. I relayed to him what I had read about your experience with it too. Thanks!
No problem...I just want to help people, I wish they would listen! I am super happy it works for you.
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