On Retigabine ...

[Mark Beehre]

I'm still taking keppra and camrpal as they are relevantly safe compared to trobalt. And I would rate my tinnitus a 3.

My doctor would not prescribe me keppra. He said studies have shown a high risk in developing kidney and renal failure.

 

[Danny Boy]

My doctor would not prescribe me keppra. He said studies have shown a high risk in developing kidney and renal failure.

Unknown frequency

• Disturbances in the normal numbers of blood cells in the blood.
• Inflammation of the liver or pancreas.
• Hair loss.
• Pins and needles sensations.

Read more: http://www.netdoctor.co.uk/brain-and-nervous-system/medicines/keppra.html#ixzz3fd3Ah4XC
Follow us: @NetDoctor on Twitter | NetDoctorUK on Facebook

 

[amandine]

Well, at least trobalt doesn't increase tinnitus.

Is that for certain? If take it then it cannot increase the T - is that for sure?

Unknown frequency

• Disturbances in the normal numbers of blood cells in the blood.
• Inflammation of the liver or pancreas.
• Hair loss.
• Pins and needles sensations.

But danny you have been telling people for months how fantastic Trobalt and Keppra is and now you seem busy telling people how dangerous these drugs are - this is very confusing dan
You have said that you have taken these drugs and are still taking these drugs with no side effects or issues

 

[Geo]

good cos your post was difficult to understand but now it is clear - thanks!
By the way - have you stopped completely with the trobalt now - stopped taking it completely? and if so is your T still down to a 1 or really low or are you still taking a low dosage of trobalt? are you still taking keppra?
Thanks for the info!

he has stopped taking it. he said it rose just a little bit after trobalt.. and he still takes keppra and

Is that for certain? If take it then it cannot increase the T - is that for sure?


But danny you have been telling people for months how fantastic Trobalt and Keppra is and now you seem busy telling people how dangerous these drugs are - this is very confusing dan
You have said that you have taken these drugs and are still taking these drugs with no side effects or issues

hes always said trobalt is dangerous. It should be a final resort drug. And keppra isnt as safe, youncan get side effects like sny other drug but you have know that before taking.. Most didnt get none, i did.. Depends on the person i guess..

 

[Street Spirit]

My doctor would not prescribe me keppra. He said studies have shown a high risk in developing kidney and renal failure.

High risk?! Well wtf?!!

 

[Zimichael]

My doctor would not prescribe me keppra. He said studies have shown a high risk in developing kidney and renal failure.

Mark... Check this out c/o my favorite source for plain vanilla drugs info (drugs.com) and a couple of other tidbits:

Before taking this medicine:

You should not use Keppra if you are allergic to levetiracetam. To make sure Keppra is safe for you, tell your doctor if you have:

kidney disease;
depression or other mood problems;
a history of mental illness or psychosis; or
a history of suicidal thoughts or actions.
You may have thoughts about suicide while taking this medicine. Tell your doctor if you have symptoms of depression or suicidal thoughts during the first several weeks of treatment, or whenever your dose is changed. Your family or other caregivers should also be alert to changes in your mood or symptoms.

Well...'mood problems', depression and suicidal thoughts are pretty much par for the course if you have any active brain cells and the levels of T and H that some of us experience. So this is "standard cover-your-arse filler" for any psych med IMHO.
However, later, in the "professional/psychiatric" section there a statistic that seems a bit at odds with this above...as the skivvy is an increase of 0.7% for suicidal depression. Ummmmmmmmmmmm...not exactly a big jump. Hell, you could say that for half a beer I bet.

Psychiatric side effects such as depression (up to 5.7%) including suicidal depression (up to 0.7%), irritability (6%), and mood swings (5%) have been reported.

Overall though, no big jump up and down about Renal/Kidney failure...which made me look at symptoms (and wonder what the difference is between "Renal Failure" and "Kidney Failure"...Errr, none?!):

Symptoms of acute kidney injury may include:

Little or no urine when you try to urinate.
Swelling, especially in your legs and feet.
Not feeling like eating.
Nausea and vomiting.
Feeling confused, anxious and restless, or sleepy.
Pain in the back just below the rib cage. This is called flank pain.

So, there you have it. And regular urine, Creatinine, GFR and BUN tests could keep track of that...I guess.

Sounds like your doc is not very adventurous. Mine prescribed Keppra within five minutes of an email asking what he thought of the idea. Not even any questions. (Though he does know I know more about this Kv stuff than he does).

Best, Zimichael

 

[Mark Beehre]

Mine prescribed Keppra within five minutes of an email asking what he thought of the idea. Not even any questions. (Though he does know I know more about this Kv stuff than he does).Best, Zimichael

Thanks mate, appreciate the reply and detail.

Did Keppra make any difference to your circumstance?

 

[Danny Boy]

Is that for certain? If take it then it cannot increase the T - is that for sure?


But danny you have been telling people for months how fantastic Trobalt and Keppra is and now you seem busy telling people how dangerous these drugs are - this is very confusing dan
You have said that you have taken these drugs and are still taking these drugs with no side effects or issues

Trobalt is, Keppra isn't. It says unknown frequency, which means it's extremely rare.

 

[Zimichael]

@Mark Beehre ... My Keppra is still sitting at the pharmacy as only came in yesterday. Was hoping for a hand to hold before I tried it as there is high potential for waves under my very fragile neuro-biochemical boat. However, I may just decide to go ahead as WTF hell else am I doing?!
Day by day, etc., etc.

Incidentally, I clicked your name for "Profile" info, to see and remind me where you were at (not New Zealand...I know that) in terms of your T or possibly H, and why you were after Keppra...But sigh! Nothing there at all...and my memory is f'd, so all I can recall is that you ride motorcycles, or did, and sit in the back yard listening to birds I think - which helps/helped...Oh yeah, church music got to you too. But I thought you were doing better.
[Sorry, I've been very out of the loop and still am].

Best, Zimichael

 

[Mark Beehre]

@Mark Beehre ... My Keppra is still sitting at the pharmacy as only came in yesterday. Was hoping for a hand to hold before I tried it as there is high potential for waves under my very fragile neuro-biochemical boat. However, I may just decide to go ahead as WTF hell else am I doing?!
Day by day, etc., etc.

Incidentally, I clicked your name for "Profile" info, to see and remind me where you were at (not New Zealand...I know that) in terms of your T or possibly H, and why you were after Keppra...But sigh! Nothing there at all...and my memory is f'd, so all I can recall is that you ride motorcycles, or did, and sit in the back yard listening to birds I think - which helps/helped...Oh yeah, church music got to you too. But I thought you were doing better.
[Sorry, I've been very out of the loop and still am].

Best, Zimichael

Hey @Zimichael , all the best with the keppra. Hope it is the cocktail that makes the difference and gives you some comfort. I think it's about time you deserved a break aye!

Yeah, mine was sound induced. My right ear is the problem, it seems sensitive to noise. I have a high frequency pulse in the ear which is only just noticeable in the perfect conditions. But after enough exposure it winds up and becomes intolerable. Wearing the ear plugs as infrequently as I have only seems to have made it more sensitive. Gah! I am starting to think the only solution is to get the ear ablated. Off to see a new audiologist this week who has some experience with this. He's going to try me on a ear piece noise generator doohickey with slow increments in volume to see if I can desensitize.

Keppra was for the winding up part. I wondered if taking it would stop that aspect.

 

[PaulBe]

Drug companies are obliged to report any finding that could be possibly implicated with the drug being used, however slight the connection. One way to deal with this is to look at warnings as they apply to other drugs in the same class. Some things will be very generic warnings (nausea, vomiting etc) that don't require a lot of consideration, and some (like blood cell disorders) can be quite specific, turning up across different drugs of the same drug class.

 

[Zimichael]

Fist up...WHAT IS THE MAIN KEPPRA THREAD THESE DAYS??? Seems like there are Keppra sequences all over the darn place, yet we used to have that main Keppra thread...which is now dormant. Ummmmm?????

Wearing the ear plugs as infrequently as I have only seems to have made it more sensitive.

Mark...Well this point above is an old thorn of mine isn't it. That doing the "exposure, not hiding behind a fear bush" thing can be hazardous to your health. If there is an H element involved (and maybe there is in a ton of initial T but it fades fast - even in days?!) then "exposure" can really screw you over. Etc., etc.

I looked up ablation and can't see specifically what you are aiming at if not "deafness inducement". Which seems radical? Am I missing something???

*(Have the Keppra, 60 pills @ 500 mg. standard not XR = good, 'cause XR caps can freak my finickety gut believe it or not. Will decide on impulse when to start I guess, as clearly it will be 'solo' venture - again...Sigh!
Probably after Wednesday though, as have a doc appointment to get through that day).

Best, Zimichael

 

[linearb]

I looked up ablation and can't see specifically what you are aiming at if not "deafness inducement". Which seems radical? Am I missing something???

No, I think that is exactly what he was suggesting, and I think that's a terrible idea because tinnitus is a complex neurological problem, and making yourself deaf seems like a pretty good way to end up in a permanent state where you only hear tinnitus, and nothing else.

 

[Mark Beehre]

No, I think that is exactly what he was suggesting, and I think that's a terrible idea because tinnitus is a complex neurological problem, and making yourself deaf seems like a pretty good way to end up in a permanent state where you only hear tinnitus, and nothing else.

I have a problem where my ear cannot handle external sounds. Baseline tinnitus is quiet, but after sound exposure it ramps up and becomes plain unbearable. I can either live in a cocoon or take steps to resolve the issue directly. I don't plan on making that decision within the next 6 months, but hey if it doesn't get better what other choice is there?

 

[linearb]

I have a problem where my ear cannot handle external sounds. Baseline tinnitus is quiet, but after sound exposure it ramps up and becomes plain unbearable. I can either live in a cocoon or take steps to resolve the issue directly. I don't plan on making that decision within the next 6 months, but hey if it doesn't get better what other choice is there?

Does wearing an earplug help?

 

[nills]

I already wrote this in reply to a question about Retigabine (brand names: Trobalt, Potiga) . This "...is a recently-introduced antiseizure medication. There are some technical reasons why such a medication might be of help in tinnitus - the theory being that tinnitus at some level is seizure activity. There is little scientific evidence to support this but a trial of an antiseizure (aka anticonvulsant) medication is relatively safe. The problem is that modern antiseizure agents (Epival, Lamictal, gabapentin, Keppra) also have some anti-anxiety and mood stabilizing actions so if there is some level of response, it is unclear what is responding - that might not matter to the patient who gets benefit, however. As always, discuss this with your doctor and remember that you might have learnt more about this than that doctor - so be gentle!!"

I have done some more research on this and I would be prepared to consider (1) prescribing this to my own patients, and (2) taking it myself.

Dr. Nagler is quite correct when he advises caution and I agree with him that to know if this will be helpful, we have to wait for proper clinical studies to be carried out, published and then replicated. However, that could take many years so the doctor (and patient) is faced with the same dilemma facing numerous patient in other chronic diseases. What is sometimes forgotten, or even ignored, is that anecdotal evidence (that is: single patient exposure to treatment in a new indication) is often the starting point to persuade researchers and the pharmaceutical company to set up formal clinical studies. The side-effects of retigabine are generally mild and have to balanced against any benefit that might result. The dose is yet to be determined and higher doses bring higher side-effects. Another problems is that Tinnitus is likely the final common result of many different pathologies so the trick might be trying to define the sub-group of T-sufferers that would benefit - that might be many years away.

By the way, in my experience neurologists are not very 'brave' in their prescribing - unless, of course, they too have tinnitus.

Hi Dr Ancill,

nice of you to be here. I recently restarted taking Regitabine. I did a try out of 3 weeks before and very much enjoyed the mood stabilising properties. I thought it was linked to the emergence of silence when taking it. However I also know that most anti-depressants are actually counter productive in Tinnitus perception. Do you think the same can ahppen taking Trobalt. Are the pills a combination of anti-seiure and anti-depressant compounds like ssri`s?

thank you for your insight

 

[Cheza]

I have done some more research on this and I would be prepared to consider (1) prescribing this to my own patients, and (2) taking it myself. ... The side-effects of retigabine are generally mild and have to balanced against any benefit that might result. The dose is yet to be determined and higher doses bring higher side-effects. ...By the way, in my experience neurologists are not very 'brave' in their prescribing - unless, of course, they too have tinnitus.

@Dr. Ancill Wait, whut? "The side effects of retigabine are generally mild"? I'm happy to hear that, but it runs contrary to the hair-on-fire admonitions and warnings I've been reading on this forum. Can you elaborate on that, so that in the future if I can get the funds to see an ENT, I'll have some evidence to present or at least something to persuade her or him to prescribe it for me?

 

[linearb]

@Dr. Ancill I am also curious what led you to the conclusion that this is a "mild" medication. Compared to what? Thorazine?

 

[erik]

Trying to rid myself of T or H with something that might make it worse or bring on other serious conditions is not worth the risk to me at this point in my life. I don't want to take the chance of replacing one bad things with more especially since the results are so mixed.

 

[Xorthian]

@Dr. Ancill Wait, whut? "The side effects of retigabine are generally mild"? I'm happy to hear that, but it runs contrary to the hair-on-fire admonitions and warnings I've been reading on this forum. Can you elaborate on that, so that in the future if I can get the funds to see an ENT, I'll have some evidence to present or at least something to persuade her or him to prescribe it for me?

Compare it to oral fluoroquinolones that can make people disabled in less than 3 days of therapy.
Basically all cancer medication.

Anyway once they can get rid of "smurf effect" and reduce "shotgun accuracy " it can be amazingdrug (sci fluor promises). Right now idk i want to try it short term to see if it helps but i cant imagine popping it for year or even 3 months...

 

[linearb]

Anyway once they can get rid of "smurf effect" and reduce "shotgun accuracy " it can be amazingdrug (sci fluor promises). Right now idk i want to try it short term to see if it helps but i cant imagine popping it for year or even 3 months...

This is sort of where I am. I would be more enthusiastic about being a guinea pig for AUT00063, than for Trobalt.

 

[dan]

This is sort of where I am. I would be more enthusiastic about being a guinea pig for AUT00063, than for Trobalt.

Ur habituated, u dont need Autifony.

 

[Cheza]

Trying to rid myself of T or H with something that might make it worse or bring on other serious conditions is not worth the risk to me at this point in my life. I don't want to take the chance of replacing one bad things with more especially since the results are so mixed.

"Side effects may include spontaneous combustion."

 

[linearb]

Ur habituated, u dont need Autifony.

I'm not sure what gave you that idea; perhaps you have me confused with someone else...

 

[dan]

I'm not sure what gave you that idea; perhaps you have me confused with someone else...

Nope, you said you dont suffer no more.

 

[linearb]

Nope, you said you dont suffer no more.

If I was completely habituated, whatever that means, I don't think I'd spend very much time here. I have my runs of weeks or months where I don't think about this problem very much, and you generally won't see me here.

That's largely orthogonal to the question of how I choose to consciously react to things. Tinnitus is a pain in the ass; it's just not enough of a pain in the ass, right here in this moment now, for me to feel comfortable taking Trobalt or Diazepam, even if I believe that either of those things might reduce the volume by a really significant amount.

Anyway, I don't think we agree on much, or tend to see eye-to-eye, and I have no interest in arguments or semantic nitpicking or digging through post histories to find inconsistencies. This condition is a hell of an ordeal, for everyone who has to deal with it, and I wish us all the best in finding peace and happiness, however we choose to approach that... I, for one, am off to the quiet of the woods for a few days with my wonderful wife.

 

[dan]

If I was completely habituated, whatever that means, I don't think I'd spend very much time here. I have my runs of weeks or months where I don't think about this problem very much, and you generally won't see me here.

That's largely orthogonal to the question of how I choose to consciously react to things. Tinnitus is a pain in the ass; it's just not enough of a pain in the ass, right here in this moment now, for me to feel comfortable taking Trobalt or Diazepam, even if I believe that either of those things might reduce the volume by a really significant amount.

Anyway, I don't think we agree on much, or tend to see eye-to-eye, and I have no interest in arguments or semantic nitpicking or digging through post histories to find inconsistencies. This condition is a hell of an ordeal, for everyone who has to deal with it, and I wish us all the best in finding peace and happiness, however we choose to approach that... I, for one, am off to the quiet of the woods for a few days with my wonderful wife.

Oh ok, I must of misunderstood your absence from T forums as a sign of habituation.
So you dont think about it much and then suddenly it becomes a pain in the ass once again?
What a strange thing is T....

 

[attheedgeofscience]

The side-effects of retigabine are generally mild and have to balanced against any benefit that might result.

I would agree with this. I am surprised by the amount of "blame" Trobalt has been getting. I am on day 7 of a very fast taper (already at 1000mg/day) with no real side-effects other than drowsiness and slight cognitive deficits (e.g. many more typos than usual).

It is not clear to me why so many members of TinnitusTalk have "blamed" Trobalt for various other side-effects such as double vision, acute bladder issues, and blackouts due to minor modified tapering. I suspect perhaps a mix of cross interactions with other types of medication that a number of folks are taking.

As for front-effects (i.e. the off-label purpose of taking the drug), I will have to wait a little before evaluating that: but it seems that I have noticed some slight changes.

 

[monacco]

t is not clear to me why so many members of TinnitusTalk have "blamed" Trobalt for various other side-effects such as double vision, acute bladder issues, and blackouts due to minor modified tapering

you are on day 7 ,the side effect may appear later, I hope not .I sotpped taking it beacause it prevented me to sleep.

it seems that I have noticed some slight changes.

be clear here

 

[attheedgeofscience]

be clear here

I have already stated I am going to wait a little. I don't like to draw hasty conclusions. In addition, this forum still has two "camps" so-to-speak. One that you could call the Nagler-camp, and, one that you could call the pioneer-camp.

In my personal opinion, Dr. Ancill is entirely correct when he mentions the following:

What is sometimes forgotten, or even ignored, is that anecdotal evidence (that is: single patient exposure to treatment in a new indication) is often the starting point to persuade researchers and the pharmaceutical company to set up formal clinical studies.

But of course, you have the die-hard-I-want-irrefutable-proof-Nagler followers who will not agree to anything unless it - the proof - of a medical study has been peer reviewed in +20 journals of science or medicine. There is nothing these guys enjoy more than to tear everything apart. Especially if they can do it in public.

See what I mean...?

But the placebo effect is not merely a "mental" effect. The placebo effect has a sound neurological basis. We are not talking here about something akin to wishful thinking.