Retigabine (Trobalt, Potiga) — User Experiences

[Lake Girl]

New User Information

Gender:
Female

Age:
46

How Long Have You Suffered From Tinnitus? (Date of Onset):
May 1, 2013

How Did You Get Tinnitus?:
Unknown

Explain How You Got Tinnitus:


Is Your Tinnitus in Which of the Following?:
Left Ear, Head

What Kind of Tinnitus Do You Experience?:
Hissing, Static

Describe Your Tinnitus:
Hissing and static. Head noise. Very seldom in my ear alone. T was VERY bad (10/10) until starting tegretol in August 2014. Tegretol helped a lot (6/10)Trying potiga to see if it will help more.

The Severity of Your Tinnitus Before Starting Retigabine?:
10 out of 10

 

[TomKA]

New User Information

Gender:
Male

Age:
44

How Long Have You Suffered From Tinnitus? (Date of Onset):
28 January 2004

How Did You Get Tinnitus?:
Other (define below)

Explain How You Got Tinnitus:
otitis media/middle ear infection
first onset 2004 - mild to tolerable state - full habituation afte 1 year - until second infection 03/2014 - 3-5x louder, more tones, higher frequency

Is Your Tinnitus in Which of the Following?:
Both Ears, Head

What Kind of Tinnitus Do You Experience?:
Ringing, Hissing, Whooshing

Describe Your Tinnitus:
Hissing in the head, whooshing in left ear, some extra tones in right ear, changes in intensity, if one tone goes down another one comes up in front

The Severity of Your Tinnitus Before Starting Retigabine?:
7 out of 10

 

[Albertus]

Progress Report

Progress Report Date:
Dec 20, 2014

Current Retigabine Dosage:
300mg X 3/Day

Current Side Effects:
None.

Current Tinnitus Severity:
4 out of 10

Changes in Tinnitus:
Right now I'm stuck, I have not improved since my rise to 300mgX3 / day, you could even say that these last 3 days have been bad, at least my hyperacusis has not returned, although I have to say that my tone in the right ear is reluctant to leave and the reactor plane in my left ear noise increases especially along the afternoon. Do not know if I will develop tolerance, which seems incredible in just 15 days. On Monday I have review with the doctor to show the analysis of blood and urine, depending on how they are I will raise increase to 400 TID.

Other Medications/Supplements:
Same.

 

[undecided]

Progress Report

Progress Report Date:
Dec 21, 2014

Current Retigabine Dosage:
300mg TID

Current Side Effects:
The usual, orange juice pee, feeling a bit dumb and slow 30 mins after dosage, not much else. Side effects improve with time.

Current Tinnitus Severity:
5 out of 10

Changes in Tinnitus:
I feel like RTG is not doing much for me anymore other than causing some unwanted side effects.
I get a bit high after the dose but I think the drug has run its course. Sometimes it improves the T, other times it does nothing.
I'm getting close to the 2 month mark since starting and I was hoping for a T free 2015 but it seems that will not be the case.

Other Medications/Supplements:
I've been eating a lot of tangerines lately, lol

 

[tomm]

Progress Report

Progress Report Date:
Dec 21, 2014

Current Retigabine Dosage:
350mg weekday mornings, 350mg weekday afternoons, 400mg weekday evenings. 400x3 weekend.

Current Side Effects:
Reduced. Urine less orange. Concentration improved. The brain is getting used to it.

Current Tinnitus Severity:
3 out of 10

Changes in Tinnitus:
Stabilised at 3-4. Right on the cusp of my ability to ignore it. I'd consider a 2 to be effectively cured. 300 to 400 made little difference. Considering a taper down.

Other Medications/Supplements:

 

[rtwombly]

Progress Report

Progress Report Date:
Dec 20, 2014

Current Retigabine Dosage:
300mg TID

Current Side Effects:
If other patients are experiencing the same thing I am when they report positive feelings coupled with forgetfullness and slightly altered judgement, I think I have a good word for it: mania. As in, the opposite of depression in the term "manic-depressive". Since Thursday I've experienced a few sessions of feeling happy and optimistic in conjunction with my tinnitus being lessened, but also a tendency to forget things that just happened - not permanently, but momentarily. Basically I can't be trusted to put my keys down anywhere, as other patients have mentioned.

Current Tinnitus Severity:
2 out of 10

Changes in Tinnitus:
Generally my tinnitus has been very low. At times, like now, my right ear tinnitus has been quiet, and the only sounds I've had were the low-pitched tones at the top of my head that I find much easier to ignore. I've had some small periods of near silence.

Had one scary moment of much worse tinnitus when I woke up this morning. Had a howl that filled the top of my head like a screaming halo. I didn't think much of it, and it went away after some minutes, but it did wake me up early and thoroughly, so that I was unable to return to sleep.

I feel like my tinnitus is fighting back against the medicine. Probably it's more like my brain is trying to work out how to deal with the new chemical environment it is producing. It's a worthwhile experiment even if it doesn't lead to a lasting cessation of my noises as it's shown me that my tinnitus really is just a reaction in my brain and not something that indicates a larger condition - or at least, not a condition that I'm not already looking to address with diet and natural medicine.

Other Medications/Supplements:
Lutein, Magnesium, D, Fish Oil

 

[Lake Girl]

Progress Report

Progress Report Date:
Dec 22, 2014

Current Retigabine Dosage:
200 - 250 TID

Current Side Effects:
None

Current Tinnitus Severity:
7 out of 10

Changes in Tinnitus:
I Continue to have periods of silence or near silence about an hour after taking each 100mg dose. Only lasts about an hour. Overall volume seems lower with occasional spikes. Before Potiga, T was almost always a constant 10/10. Now volume fluctuates.

Other Medications/Supplements:
50mg Elavil TID
10mg Lexipro TID
100mg tegretol TID. Tapering down on tegretol.

 

[Juan Carlos]

Progress Report

Progress Report Date:
Dec 23, 2014

Current Retigabine Dosage:
300+300+ (100+100) 81kg 4am 12am 8pm

Current Side Effects:
same. mild urinary retention. A state of highness after 1h pill that lasts for 1h, write later about it

UPDATE: Yesterday I got my blood and urine analisys: everything is perfect. Only a top edge limit cholesterol, wich i can attach to RTG indirectly because it makes enjoy so much while im high and eating at same time so I eat more, well i just have to change a little my diet.

At this dose i can do totally normal life, not planning to go to 400
Advice: dont drive car on the high hour. I did it but i will just will avoid it, you lose reflexes. I also was driving bicicle, just dont go too fast, cicling is ok for me

Effect of the highness hour:

I think i am the only one on TT enjoying this so much. A normal day after work i come home, take 300mg and have a shower. When start to feel it. All stress disappear, all worries and start feeling very good, i start cook in my kitchen and really enjoy it, a haver never enjoyed cooking before. I enjoy a lot having dinner, to the point that i eat more than before, till im really full, normal plate is not enought, i eat something more.

Other day, i was painting on white a window, looked at the sky, it was perfect blue in mallorca, looked a bird flying, and realize how amazing is that they can fly so easily, it was beauty scene, also looked a plane so far away, and thought, how good is the technology at this days, we can fly like birds. Off RTG never apreaciated those little things.
on RTG I look people to the eyes and i catch what are they feeling inmediatly, off RTG Im very shy to do that, i can do it but its very dificult for me. I enjoy more stay with people and talking to them, i can understand them more.
on my work break I take a walk on the city, there I ejoy all the walk and feel more relaxed, enjoy everything I see on the walk (hey im not becoming crazy and Im myleft all the time). I want to talk to all girls around, and will do if i had a little oportunity to do it while acting in total normality

Im definetely nicer to people who i talk with, to everybody. 20 minutes ago coming back to work saw a person i know, he was on motorbike, normally i dont know if i would stop him, maybe yes, but called his name loud so he can hear me and we talked for a while (I took 200mg 1h before)
Im more exposed to say 'yes' to whatever question some one ask you, like asking a favor or making a party in your apartment wich you will regret
Im more exposed to make stupid and funny comments on facebook to any state or photo even of someone wich you normally dont comment
You have thoughts that normally dont have (in a good way), for example, today lot of people in the street because of xmas, though of how many stories and conversation happening at the same time, how many things happen at the same second, that is an amazing thing wich i would think of probably. Those are thoughts wich are always good and i like to have, RTG totally opens your mind and thinking, I like it in any way

Other day I had a dinner with friends on the high-hour, I enjoyed talking very much so i was way more talkative than usually, but not acting like a drunk man, i had very clear thoughts and good way of thinking.
Also you become more sincere on RTG, always say what I think, nothing stops you to do it, not afraid. RTG hightime kills alls the prejudices.
It makes you more like a children: ok less reflex, but you enjoy everything more, and: I become more creative: I have ideas (most of them good) wich i would never had off RTG.
If I have to do some work wich i wouldnt like off RTG, i can enjoy it even if its a boring thing like painting a wall
I sleep like god.
Is RTG addictive? No idea because I didnt taper off, maybe a little but is not documented so for sure not a phisical addiction, but a psico adiction in the way that i gonna miss that highness some time, well nothing stops me to take some pill for joy. the effect is way better than alcohol and doesn't make stomach problems and Zero hangover

The anti-stressing effect of RTG also helps Tinnitus in another way for people who have stressed-related tinnnitus, so thats, double edged sword

Another effect that was also commented by other trialees: Vivid Dreams:
Off RTG I sometimes remembered by dreams. On RTG, every single day i remember my dream, and sometimes even TWO !! I remember them so dam good, its amazing like happened in real. I already dreamed with most girls i was with. All good dreams, never had bad or nightmares. The brain mixed the most random things u can imagine. Some days I think more of the dreams I had last nights than in real life things, remember as it really happened.
One day I saw an old friend in a shopping mall, she alrady had childen, well the same next night i dreamed with her, in 8 years i know her, never remembered a dream with her

Current Tinnitus Severity:
2 out of 10

Changes in Tinnitus:
Not a big change since last report (still a good thing) but wanted to inform about good blood analisys and better report about highness
It's generally quiet, speacilly on quiet weekends (last weekend was very very good) , but on a long tiring monday after work+gym is high, even after dose, its in the morning when i wake up when its really quiet again.
I Attach my T directly to stress. One day me and T were quiet in living room and flatmate told me there was water on her bedroom wall, then T raised, totally because of stress
As i as said before on the high hour, i can get a Total silence except of a pure tone in my right ear, this is good sign.
Improvement over time at same dose is very slow but I still keep hope. Someone need a limit on taking RTG, I put 3 months hoping for lasting changes
This is going to be my first xmas with Zero alcohol, I mean ZERO because I heard mix RTG with alcohol can cause heart issues and arrithmias. Also not going to Disco or anything

RTG is NOT a miracle pill, but is a BIG help. So DO everything posible to help your T, not just take pill and think all will be fine. While on RTG take special care of your T, avoid loud sounds, relaxed life, good diet etc, Everything counts, its the whole system
One time I got a 5-minutes spike after a pill, Other trialees had the same experience many times, after spike, T went down and down

Hyperacusis is totally gone, thats a very good relief. Before sometimes i was very unconfortable speaking to people, or annoyed at gym. How horrible is someone being annoyed by his own voice while speaking, and how weird is gonna look like

Very Important while on RTG: Sleep good and long, and you will work good on next day, If i dont sleep good one day i will feel very dumb and tired next day, but if i sleep my 8h, its gonna be perfect
Also I realized, if it has a very tiring day or didnt sleep my 8h, i can't enjoy the highness hour as normally i can do

Other Medications/Supplements:
some days multivitamins and minerals

 

[NGC891]

Progress Report

Progress Report Date:
Dec 23, 2014

Current Retigabine Dosage:
200+200+200 per day/ Weigh 69kg / Start Trobalt 6 weeks ago. After 12 days at 200mg TID, I'm back down to 150 mg TID for 5 days because the effects seemed to fade Then I went up to 200mg TID for 10 days.

Current Side Effects:
+ Better earing
- I now know that I have never had hyperacusis before starting Trobalt. I am now particularly bothered by the noise of plates and cutlery. This new hyperacusis linked undoubtedly to Trobalt is stable.
+ No vertigo exept last week, I had a morning of violent vertigo and as a feeling of being drunk that forced me to lie down for 30 minutes.
- I felt light headaches. How I feel weak sore heads that seem related to eyestrain.
+ No trouble urnier (I drink less water than last weeks)
- Very light blurred vision
+ Almost every last morning I was able to remember my dreams. Before starting the Trobalt, I rarely remember my dreams.
+ No T spike

Current Tinnitus Severity:
6 out of 10

Changes in Tinnitus:
I have days and days with no or rather with little tinnitus. This last week was rather good. My tinnitus is less present and softer. It might resemble a light white noise.

Other Medications/Supplements:
Per day: Vit E: 30mg, Vit C 180mg, Zinc 15mg, Luteine 10mg, Zeaxanthine 2mg

 

[Christian78]

Progress Report

Progress Report Date:
Dec 25, 2014

Current Retigabine Dosage:
600/day

Current Side Effects:
almost none, none that i can recognise

Current Tinnitus Severity:
9 out of 10

Changes in Tinnitus:
tinnitus became worse that when i started trobalt. Now i can't any more sit in a room with computer because sound irritates me, small sounds like hissing are worst, i did not had it before at all, i can speak on phone, it is really hard, it hurts my ears, strong light hurt my eyes.

Other Medications/Supplements:
i had to take clonazepam to survive christmas, i was alone i cried a day and it was hurting a lot i took 1mg clonazepam (too much, 0,5mg would help), 3mg valium that i should have ended when i had nice time on trobalt, pitti i did not, i will see to try going 2,5. I ask you just single sentence that i wash out this trobalt that it calms down and that i can restart it with success. I think i dont have enemies here so please say little pray for me.

 

[Juan Carlos]

Progress Report

Progress Report Date:
Dec 26, 2014

Current Retigabine Dosage:
400+300 (81kg)

Current Side Effects:
the ones that mentioned before, besides, with the new 400mg dose with empty stomach:
-more ackwardness
-little visual hallucinations if I turn off the light, back and white, not colorful
-dry month
-inhability to type fast: letters are missplaced, must write suuuper slow

NOTE:thats side effects refer only for the hightime, 30-60 minutes

Current Tinnitus Severity:
1 out of 10

Changes in Tinnitus:
after taking the 4 pills, i got ABSOLUTE SILENCE, with some strange feeling, maybe because long time didnt have silence in my head

I must say I was very drugged and had some other feelings:
-after pills i was testing minium level to mask with ipad app white noise HD, i was listening to crickets. minium level was masked. So next is OFF, but i kind of still was hearing the same crickets (my T never have been crickets), it was like my brain was repeating the last sounds it heared, anyways i was very drugged and after few seconds, crickets disappeared
-At some moments i felt like my T was pulsatile with my heart, not hearing my heart, just the beep with my heart, very strange so i thought the because of my T could be blood pressure, i dont know
-At some moments, i had kind of sound-hallucinations, like when i was thinking in some sound or someone calling my name i kind of hear it, well thats all in all side effects of being very drugged but I assure that T was totally gone.
When i wake up, felt perfect, no side effects at all, T was in level 0.5, and i skip the morning dose, it still was near 1, super low, then at 4pm i took 300mg

I will explain in some post my theory and why I changed the dosage schedule. The fact is that i consider very important to take the dose wich makes you total silence, and take it before sleep, I think at day it does not matter, To prove it, next day, so today, I skip the morning dose, and T was very very quiet, more than other days that I used to take 300x3. I think im improving a lot these days, because of the killer dose of 400mg and also because its xmas so i dont have to work and i spent the days in most relaxing way. 2 days ago I slept 11 hours on a row. today i was just paiting wooden windows
I think we are all wrong taking the same dosage schedule meant for epilepsy
we just have to kick the doors down and sleep, daytime do normal life because we are surrounded by sounds so it wont be useful, or anyways i cannot take 400mg and go to work

the change from 300 to 400mg is much bigger than 200 to 300 in effectiveness, is not linear graph as we saw in the papers of its theory in some document shared on Rtg thread some time ago
is more effective to take 400x1 than 200x3, i was thinking that and today i have proved it on myself
wish all merry xmas, and my only wish, get rid of T. I will say happyly goodbye to 2014, the worst of year of my life

Other Medications/Supplements:

 

[David S]

New User Information

Gender:
Male

Age:
42

How Long Have You Suffered From Tinnitus? (Date of Onset):
27 October 2013

How Did You Get Tinnitus?:
Other (define below)

Explain How You Got Tinnitus:
Wax build-up so it touched the eardrum . Once it was removed a few days later the sound changed a little but i was still left with bad T. I am quit sure it is some mechanical damage. Wax was not removed buy suction, I used a blower with water. It is always in my left ear. Never in my brain. I am quite sure i have some nerve damage in my left inner ear or the nerves connected to it. Have some 45 db hearing lost in my left ear at 10 000 hz compared to 25 db in my right ear. That´s were i believe the problem is.

Is Your Tinnitus in Which of the Following?:
Left Ear

What Kind of Tinnitus Do You Experience?:
Ringing, Hissing, Crickets, Clicking

Describe Your Tinnitus:
Once it is at is best my T is like high pitched fast clock, fast ticking with out any regular pattern . Fast small electric shortcuts would also be a way to describe it but most often it is a high pitched ringing/hissing/crickets without any tonal quality. It is really reactive to loud noises and it is almost impossible to mask, that's way I rate it so high. Can easily hear it an jet plane, only shower masks it good. Sounds with much energy in the higher frequencies is tough for me and i try to avoid them.

I started with 100 mg Trobalt 2 days ago. Yesterday 100/100/200. I moment ago 200 mg for the second time (could really feel that i kicked in 30 mins after taking it).
- T went for sure lower, and less reactive. I could really fell it 30 min in. Almost just the TV could mask it.
- Could also fell some strange felling in my eyes but my vision was not blurred
- Sparkling in my lips
- Dizziness and slow in my brain. This is really is a potent drug. It took me 3 times as long to post this as it normally would.

My plan is to try to quite fast go up to 300-300-300 and stay there for a month or two and then slowly tapper. We will see how that goes, my neuro said that it is typically is hard to reach over 200/200/200mg because of side effects but he did´t have any problem letting me try. So far he had prescribed Troabt for epilepsy for around 10 patients but they all stopped because there are better drugs and also most of them complained about side effects. It feels god to have a doc that that have first hand experience of the drug and he could´t see any problem at all letting my try it for T. I do not want to take any risks staying on this to long but he recommended me to try at least for 3-4 month. I will go on for as long I feel that my T is improved and the side effects is manageable. I want to point out that i am not too sure that there is any effect with this drug t after quitting taking Trobat but at least i want to give it a try. It has fore sure some effect once it is in my body but then again there is a lot of meds that palpably would. I would rate my T as 3-4 once the med peeked.


My final words for now would be that there is some good hope in this (at least for my type of T). Some more research around this type of active substances could possibly take us big steps forward.

Happy new year to all of you!

The Severity of Your Tinnitus Before Starting Retigabine?:
8 out of 10

 

[Albertus]

Progress Report

Progress Report Date:
Dec 29, 2014

Current Retigabine Dosage:
400mg 23:00h + 400mg 07:00h

Current Side Effects:
on an empty stomach I feel a jolt that makes me see hallucinations if I close my eyes and almost no leaves keep me going, so you must eat something before taking the dose or you may no side effects.

Current Tinnitus Severity:
3 out of 10

Changes in Tinnitus:
As noted Juan carlos, I have also decided to delete the dose noon because just did not feel any effect. So I avoid creating tolerance and strengthen both doses of the night where the brain is resting and assimilated much better. I have improved in general, the motor reaction of the left ear is now a slight tv detuned very easily maskable, beep right ear just what I hear day and curiously to rest her head on the pillow at night completely disappears after 10 minutes . Hyperacusis completely disappeared and hopefully never again. I would feel happy if these changes were permanent when completely abandon Trobalt. I only took 25 days in Rtg, it'll be a few more months trying to improve a little more and consolidate what has already been won. I will keep you informed.

Other Medications/Supplements:
Omega 3 700mgx2/day, Magnesium 200mg, Lutein + zeaxanthin 30mg, Melatonine 4mg for sleep.

 

[tomm]

Progress Report

Progress Report Date:
Dec 30, 2014

Current Retigabine Dosage:
250mg, 3x a day

Current Side Effects:
Taper down. Hour long all over headaches verging on migraine. Increased urination. Disappointment induced depression.

Current Tinnitus Severity:
5 out of 10

Changes in Tinnitus:
T increasing as dose decreases.

Other Medications/Supplements:
No change.

 

[rtwombly]

Progress Report

Progress Report Date:
Jan 7, 2015

Current Retigabine Dosage:
300mg TID

Current Side Effects:
Juan Carlos is not alone. I have had manic episodes for weeks that I generally quite enjoy. I'm happy and peppy and more creative, though it's dappened by the mild short term memory problems.

The other day I was watching the morning news and started to notice how pretty the newswoman's shiny earrings were. Also the sparkly makeup she was wearing. She was attractive in general, but I was just especially drawn to her earrings and makeup. Then the camera switched to a male anchor and I was drawn to the lights glinting off the top of his glasses. Shiny!

So yes, I do enjoy life a bit more. Lately the effecitiveness of the drug seems to have worn off a bit, though this morning I did have some minutes of perfect habituation where I forgot about my tinnitus completely, though when I noticed, it was there, just very soft.

A new side effect for me is that I don't seem to be getting messages from my bladder. That is, I never feel like I have to pee. It's not a huge deal, as I just go regularly without feeling the need. I definitely have bladder hesitation, but I'm dealing with that as well. I don't have to sit to pee, but I have to marshall my control of my body and push on the nerves more that I should while standing. I'm going tomorrow to my MD to ask for a kidney evaluation.

One more funny note. Even the bad side effects can be useful. I take another pill with my 11pm dose of Potiga and just now I wasn't sure if I had taken both or just the supplement. I decided I could not risk taking a double dose, so I'd just sleep and take my morning dose, praying that wouldn't cause me trouble. Now I know I didn't miss the dose 'cause the letters are swirling a bit on me, I'm having problems typing, and I'm gettng the tingling of my tongue that I just realized I haven't mentioned before. Yay! I took my pill!

Current Tinnitus Severity:
2 out of 10

Changes in Tinnitus:
Had a great weekend. Took a trip to Florida to help my Dad check out a house he was thinking of buying. 20 hours of companionable driving plus extra sleep and moving around to really cool locations and good restaurants drove my tinnitus down to a 1 or a .75. It was quiter than the lights in the stairwell.

Back home and it's a bit louder, but I think I'm on the right course.

Other Medications/Supplements:
This is new: a course of neuro-transmitter enhancing supplements, namely Prolent and Lentra. These are supposed to enhance my GABA transmitters and receptors, permanently. I'm starting Procite-D tomorrow, which is an excitatory enhancer.

Interestingly, my neurotransmitter tests showed that all my neurotransmitters were low, both inhibitory and excitatory. The values that were lowest relative to the reference ranges were dopamine and nor-ephinephrine, which are in the excitatory column. Based on what we know about Retigabine's effect, I expected only the inhibitory transmitters to be low.

 

[locoyeti]

Progress Report

Progress Report Date:
Jan 8, 2015

Current Retigabine Dosage:
varies, tapering down to 600mg/day, but have gone over a few times.

Current Side Effects:
none really.

Current Tinnitus Severity:
3 out of 10

Changes in Tinnitus:
t still there, but is more in head.

i stayed at 900mg/day for about 8 days, coming from 1200mg/day. i found that dosage to be very good for my t, but i don't know how much going to 1200mg/day may have affected that. let me be a bit more specific,
when i take 400mg dosage in the morning, this is what more or less happens:

15 - 30 min - tingling in lips - get a bit 'high'
next 1-2 hours, pretty high, i've gotten to the point where i can function but the first week it was hard. what seems to happen though during this time is that i get this rhythmic t behind my ears. very strange. it would sort of go away after a few hours some of the time. this presented the same when i took my 300mg dosage in the morning. by the way this would happen even when i had a relatively silent morning, which means that the drug 'caused' some t to happen.

when i went back down to 900mg/day, i had these same symptoms of the rhythmic t come after 30min again, but the volume was much lower, and it seemed to go away more often, and the rhythm was harder to sustain. a permanent effect?

i went down to 600mg/day 3 days ago (trying to taper completely off), but 2 days ago i had a really annoying spike and decided to go ahead and take a 300mg dosage, which interestingly enough really helped. maybe this thing can be taken like aspirin. as i am tapering off it seems as though my t, although still lower, is a tad bit harder to deal with since i don't have that sedative effect of the drug. i, like juan carlos, actually enjoy this drugs 'high' effects, so it is going to be interesting to go back to sobriety after being in a more or less constant high for 2 months. i think i am going to stay at 600mg/day for a bit and go lower in another week.

ill try and stay off it for at least a few months, but i really do think that taking this like aspirin for t might work. a good solid 300mg dose when your t is really spiked might kick it down a few notches.

Other Medications/Supplements:
none.

 

[RaZaH]

Progress Report

Progress Report Date:
Jan 11, 2015

Current Retigabine Dosage:
100 mg occasionally.

Current Side Effects:
I feel a bit drugged when I take the pill but no side effects as such.

Current Tinnitus Severity:
5 out of 10

Changes in Tinnitus:
I only use a 100mg when I am doing very bad, it seems to pretty much kill my T for a few hours, maybe 3 hours. I am super apprehensive about drugs and that is why my approach has been occasional use.
I am however planning to go full on as I am not doing all that great and I can feel that the occasional 100mg has a lesser effect than at the start.

Other Medications/Supplements:
NONE.

 

[NGC891]

Progress Report

Progress Report Date:
Jan 12, 2015

Current Retigabine Dosage:
150+150+150 per day/ Weigh 69kg / Start Trobalt 9 weeks ago. I'm alternate between 150 mg TID and 200mg because the effects on Tinnitus fade away

Current Side Effects:
+ Better earing
- Hyperacusis was very high the three last days. This strong hyperacusis makes me want to stop treatment because too painful.
+ No vertigo exept last week, I had (again) a morning of violent vertigo and as a feeling of being drunk that forced me to lie down for 30 minutes.
+ No trouble urnier (I drink less water than last weeks)
- Very light blurred vision
+ Almost every last morning I was able to remember my dreams. Before starting the Trobalt, I rarely remember my dreams.
- Little T spike

Current Tinnitus Severity:
7 out of 10

Changes in Tinnitus:
There are ups and downs in terms of intensity of tinnitus. Highly variable effect on tinnitus. This three lasts days were bad. Today was better.
When my tinnitus is less present and softer, It might resemble a light white noise.

I hesitate to completely stop treatment for a type of aspirin dosage less regular. For now, I will follow the recommendations of @Juan Carlos in particular trying to take as much as possible the tablets on an empty estoma. The effect appeared to be more effective.
I think therefore try halving the evening dose.
The only negative is that hyperacusis is sometimes very painful.
The variation of 500mg to 400mg daily dosing leads very sensitive side effects (feeling of being drunk). This medicine is very powerful.

Other Medications/Supplements:
Per day at the morning: Vit E: 30mg, Vit C 180mg, Zinc 15mg, Lutéine 10mg, Zéaxanthine 2mg

 

[Lake Girl]

Progress Report

Progress Report Date:
Jan 13, 2015

Current Retigabine Dosage:
100mg twice per day

Current Side Effects:
None. Had a full blood work up two weeks ago, including liver and kidney function. All tests were normal.

Current Tinnitus Severity:
6 out of 10

Changes in Tinnitus:
T volume continues to be lower than it was pre-Potiga. Was doing better on higher dosage ( 100mg x 3) had to lower dosage due to supply. Dr. will not increase for me yet.

Had some very stressful days at the start of the new year. Stress will generally make T worse, but it maintained at the lower volume.

Other Medications/Supplements:
Because Dr. will not increase potiga yet, I am continuing on 200mg Tegritol in the AM.

 

[locoyeti]

Progress Report

Progress Report Date:
Jan 14, 2015

Current Retigabine Dosage:
none

Current Side Effects:
none. i have been off it for 4 days. sleep is a bit harder (which is pretrial baseline for me, gosh i miss the soporific effects of this drug, and the lucid dreams). other than that, i feel a bit more productive and am slowly getting my mental faculties in order (i had 'checked out' for the last two months).

Current Tinnitus Severity:
3 out of 10

Changes in Tinnitus:
i have been off the drug for 4 days. i still have t, but it is i suppose lower. lot less intrusive. the biggest issue for me though is that my H is almost completely gone away. i remember just walking around outside being cumbersome, i would react to the loud noises outside. now i walk outside and have no issues whatsoever, even when an ambulance or firetruck go by (which happens freaking every other day where i live). so that is a huge plus for me and would be the number one reason i would recommend anyone get on this drug. remember, when i started i didn't even really understand that i even had hyperacusis, i just lumped those issues in with tinnitus. this drug really breaks the entire constellation of symptoms down for you so that you can understand the various aspects of your tinnitus (i think one's own specific cocktail of symptoms is idiosyncratic). the second biggest thing i would say would be the random spikes have all but gone. i still have a low level of tinnitus though, and if it stays at this level, i think it might be something i could habituate to. i think this drug completely leaves the system in a two weeks or so, i will still monitor it if it gets any worse, but i feel there has been a permanent effect for me.

Other Medications/Supplements:
none.

 

[undecided]

Progress Report

Progress Report Date:
Jan 15, 2015

Current Retigabine Dosage:
Aspirin like 300mg once a day

Current Side Effects:
None

Current Tinnitus Severity:
3 out of 10

Changes in Tinnitus:
I've tried taking a single dose of 300mg of RTG for the past couple of nights, used it like an aspirin since my T tends to get a bit louder as the day goes by and is a bit intrusive by night.
It has worked quite well, gives me the usual high 30 minutes after taking it, then feel a bit uncoordinated, my brain seems to dig up lost memories and names that I've long since forgotten, then I go to bed where I sleep almost immediately with the T volume down 60-70%.
I don't know if using it this way is healthy, however it doesn't seem to cause any side effect out of the ordinary.
One thing I noticed about RTG is that it causes a bit of numbness at the edge of some of my fingers (not all of them). I never noticed that before.
Also, I ate a couple of cookies while under the influence of the drug and they seemed a lot more tasty than usual, weird. No problems with urinary hesitation, no colored pee.
This is without a doubt the strangest drug I've ever taken.

Other Medications/Supplements:
I've been taking 10mg fluoxetine daily as of late, for my 'depression'.
Quite useless, I'll be stopping tomorrow.

 

[tomm]

Progress Report

Progress Report Date:
Jan 16, 2015

Current Retigabine Dosage:
Single 200mg dose on 8th Jan to test 'painkiller' theory. No regular doses since Dec 30th 2014

Current Side Effects:
Retigabine has had no subjectively lasting negative effects.

Current Tinnitus Severity:
5 out of 10

Changes in Tinnitus:
This is a retrospective. The brain is excellent at 'adjusting' your memories of past events. Take with a pinch of salt.

When I started taking retigabine I had terrible hyperacusis. I could not tolerate a squeaky tap in my silent bathroom without blinding pain. I can now walk in a non-rush hour London street without earplugs. Louder noises still affect me but I can protect sensibly.

This may be just due to time. The start of my 300mg+ doses was about the same time it started to fade. This is not evidence retigabine was responsible. My personal opinion would be to give it a go for H.

My tinnitus was much further from my mind while taking retigabine. Less than 300mg x3 did absolutely nothing for me and I swore blind I had been robbed at lower doses.

While on it my thinking was very much slowed and I was a comfortable 'twit' (happier, but considerably slower in all ways mentally). My mood was considerably improved to the point of bad decision making (like being a happy drunk).

I did have 3 totally silent periods of 2-15 minutes. Again this may have been due to how close I was to onset - my brain was likely adjusting. I am very glad I took the opportunity to be 'in the moment' for the very last bit of silence and realise that stopping to enjoy life is very important.

Like a handful of other participants, I got a small spike after dosing, found the side effects much lower if taken after food, and only got more side effects vs help after a certain dose (400mg was not more effective but rendered me insensible).

My T severity has dropped by 30% since I started retigabine. After I tapered off it has stabilised and remained constant. Moved from my ears to my head and about half the time is more of a feeling than a sound.

I am not cured, but I am better than I was. This may simply be due to the 'tincture of time'. Retigabine did give me some much needed emotional relief. I appreciate it's psychological value there.

As long as you manage the side effects and do not cause more harm to yourself, retigabine is an option. Not a long term one, and one that is best approached as a 'chemical holiday'.

Do not blindly expect permanent results or you will find yourself sad when you do not get what you hoped for. Just be pleased if a little help occurs instead, and even more pleased if you happen to have an unusually good day during your 'sparrow's flight through the banqueting hall'. Take a second to breath, relax, and appreciate that moment.

When you think of it in the future, pick it up and fold that memory carefully away like a precious photo. You'll bring it out again when you need it and it will sustain you.

For some people, retigabine can help you see how you can live with your T. With practice you can bring yourself back to the place it showed you without taking it every day.

It retrospect it is a little lesson, reminding you of the flexibility of your own mind and a little silver of hope - if this thing can change T a little, something else may eventually change it a lot.

Other Medications/Supplements:
No change.

 

[RaZaH]

Progress Report

Progress Report Date:
Jan 16, 2015

Current Retigabine Dosage:
I have now started to to take 100mg twice a day IF NEEDED . Only when its driving me nuts.

Current Side Effects:
None.

Current Tinnitus Severity:
4 out of 10

Changes in Tinnitus:
The tinnitus severity scale might be misleading as when I do take the pill it still drops to a 1 , between that it can get to hellish levels like it always has. One thing I have noticed and it might not be the RTG is that my T is much more of a feeling than a tone . Having said that , this "feeling" drives me completely nuts.

Mornings are still super bad like always , literally like I was hit over the head with bat , super loud all encompassing shimmer type of sound/feeling .

All in all though , I feel that my T has improved , I get much larger/longer breaks during the day.
Have no idea if RTG plays a role in that.

Other Medications/Supplements:
none.

 

[65vwbus]

New User Information

Gender:
Female

Age:
37

How Long Have You Suffered From Tinnitus? (Date of Onset):
Nov 2, 2013

How Did You Get Tinnitus?:
Other (define below)

Explain How You Got Tinnitus:
It appeared after an epidural blood patch, I also got nerve pain on the right side of my face and teeth at the same time.

Is Your Tinnitus in Which of the Following?:
Right Ear, Head

What Kind of Tinnitus Do You Experience?:
Ringing, Hissing

Describe Your Tinnitus:
Three loud tones, very high pitched.

The Severity of Your Tinnitus Before Starting Retigabine?:
9 out of 10

 

[65vwbus]

Progress Report

Progress Report Date:
Jan 20, 2015

Current Retigabine Dosage:
50mg x 3

Current Side Effects:
Reduction in previously fairly drug resistant neuropathic face and head pain. Slight reduction in tremor caused by a previous drug. It has also got rid of the tiny twitch under my eye on the painful side.

Current Tinnitus Severity:
9 out of 10

Changes in Tinnitus:
Not much to report yet, yesterday for a short while one of the tones turned into sort of morse code.

Other Medications/Supplements:
Dosulepin, Primidone.

 

[locoyeti]

Progress Report

Progress Report Date:
Jan 21, 2015

Current Retigabine Dosage:
none, been off it for almost two weeks

Current Side Effects:
none. i am back to normal in terms of mental acuity.

Current Tinnitus Severity:
2 out of 10

Changes in Tinnitus:
tinnitus is low but is still fluctuating from day to day. i had a bad day and a half, maybe a few days ago. mostly been low though. lower than before the drug.

h is still basically gone. during my 1.5 bad days i just mentioned, i had a bit of h, but it was 'smeared', if that makes sense. i didn't get the weird sensation of hearing particular frequencies super loud, it just seemed like noise in general was very slightly annoying. it wasn't that bad though, compared to past h attacks in the past. i was still able to go out and about outside with no problems from the noisy city.

Other Medications/Supplements:
started ketogenic diet 5 days ago. i realize this might be a confound in the experiment, but it is something i want to do. i don't think it will effect anything too much, and if anything will probably be helpful (google ketogenic diets for epilepsy for the curious).

 

[Albertus]

Progress Report

Progress Report Date:
Jan 23, 2015

Current Retigabine Dosage:
300mg X 3/Day, Sometimes 300 + 400 + 300 or 300 + 300 + 400

Current Side Effects:
None.

Current Tinnitus Severity:
2 out of 10

Changes in Tinnitus:
I have been for a couple of weeks stalled, but these last two days have improved especially at night. My hyperacusis has completely disappeared and no signs back, the tone of the right ear comes and goes during the day, and the chirping of my left ear is still manageable. What I have noticed is a big improvement at night, when I'm 20 or 30 minutes in bed relaxed about to sleep all beeps are disappearing gradually to almost disappear. I sometimes I wake up at night in complete silence. And whenever I wake up I do it in silence, although throughout the morning return to its original level. I think I'm slowly gaining him heading this damn T, increasingly get more moments in silence. I also wanted to say that I have a few days practicing residual inhibition with sounds generated by myself with audacity and the truth is that by RTG is a very effective weapon against T. I hope to have better results in my next report. The hope is never lost and never have to stop fighting. A greeting !!

Other Medications/Supplements:
Omega 3 700mgx2/day, Magnesium 200mg, Lutein + zeaxanthin 30mg, Coline & Inositol 200mg, Melatonine 4mg for sleep.

 

[Juan Carlos]

Progress Report

Progress Report Date:
Jan 28, 2015

Current Retigabine Dosage:
200+300+300

Current Side Effects:
same

Current Tinnitus Severity:
2 out of 10

Changes in Tinnitus:
Hi folks, according to my plans I should start taper off soon. Drawing some conclusions of this drug

Erradicates tinnitus after taking the right dose for 1-2 hours, then it comes back, seems that this drugs quits my body very fast. we need another version wich stays more time in body and more constant
I think it could be cure tinnitus in few cases, but not in most of them. We need to induce silence for more than 4 months and thats very difficult and risky with this drug, even so its posible to make some improvement wich can last over time
As a experience, is wonderfull for me, it made me lots of joyfull moments and happyness wich also made me forget about T. I think this drug could have a nice welcome in the joy area, i would like that it doesnt have the bad long time side effects.
Well, about side effetcs i could be 2h talking, just read my report experiences.
My T has changed? yes. Now is more variable, and more sensitive. Before was a solid rock, even soft but always the same. Not I can feel it goes up after dinner. It goes up when I lie down, maybe its related to blood pressure. And some moments its near silence without need of a pill. It seems to me like volume is lower but frequency bit is higher or maybe just a feeling because now its the cleaned version, its hard to say. Need references to say if it has improved. for some ref i can say yes, for example before, after shower was high, not now. before i could lisen it very well when put headphone in my offine, not now. At nights is louder. I really wish I did audiometry before and after to be sure. I did one before, so maybe one day i will do another, when i come back from my trip. Now i can get near silence just relaxing. when i get stressed it totally goes up

I wonder if will be very safe to do 4-month treatment every year for many years, any thought? regarding the halloween side effects.
I dont discard the idea of use it as aspirin, for T and also to lower stress, and also for joy. Now i have prescription for live so i can but anytime. For some point of few seems like a good drug: causes good effects, doesnt cause dependence, and no hangover effect, its different to any other

Other Medications/Supplements:
multivitamin

 

[undecided]

Progress Report

Progress Report Date:
Jan 28, 2015

Current Retigabine Dosage:
300mg twice or three times a week (aspirin)

Current Side Effects:
zero

Current Tinnitus Severity:
3 out of 10

Changes in Tinnitus:
My tinnitus has been flactuating a bit less latetely, having more medium days than good days but it doesn't seem to bother me as much as it used to.
300mg RTG pretty much kills any sign of T bringing it down to 0.5/10, meaning I feel pretty great for 5-6 hours. I usually take it in the afternoon and it lasts until I go to bed. I don't even feel like taking it every day, just knowing that its there and relief is only a pill away makes quite a difference.
I still believe its a very, very nasty drug but I'm starting to think that tapering up was a waste of pills (I could be 100% wrong about that though).
I have about 70 pills left so I'll be looking to get a new prescription in the near future. I find that I can switch between benzos, RTG, and natural supplements like Valerian each day in order to keep myself from getting a tolerance towards any of them.

Other Medications/Supplements:
1/2 pill of Lexotanil (benzo) every couple of days, Valerian or Melatonin every couple of days.

 

[rtwombly]

Progress Report

Progress Report Date:
Feb 1, 2015

Current Retigabine Dosage:
300mg every 10 hours

Current Side Effects:
Hmm. Well at the moment I'm feeling fine, but the point of this update is to say that at some point recently I've reached a saturation point and can no longer stay on 300mg every 8 hours.

Thursday I was just annoying to be around. My wife and my daughter both felt that way and they are the ones who have to put up with me. Yesterday I had an overly emotional discussion with my daughter that may have freaked her out a bit but which I still feel was honest and sincere.

Then we get to last night. After my 10:35pm dose, I was trying to record my thoughts on my phone and do the dishes, right before going to bed. At some point I started babbling pretty well incoherently, judging from the bit I played back for myself. What I was trying to record was that I was noticing patterns in the droplets on the baking pan I was about to put in the dishwasher. First I noticed drops making the shape of a cartoon dog, then another set of drops making his twin, lastly Mickey Mouse's head, which admittedly is easy to see in any random splash of droplets. I added that I had started to perceive an underlying pattern on the surface of anything white - the dishpan, sink, stove, microwave, finally a piece of paper where I tried to trace the pattern. It was dim yellow, and actually quite beautiful. I compared it to tinnitus and thought that were I stuck regarding blank white surfaces as having this patina, it really wasn't so bad of a thing.

Now I realize the pattern was taken from some art of my daughter's that has been on the fridge for most of the school year. My brain scanned it, flipped it, an multiplied it infinitely across all surfaces, in a pale tracing that could only be seen on white. Fascinating, but part of a very bad night. Soon after I distinctly heard a door close in my house - one of my doors closing only in my house, not any other door anywhere else - and went to check that my wife was still asleep. I stumbled so much on the way to check, and was disturbed sufficiently by her not being up to close a door, that I told her to come with me.

There ensued a wretched time of slurring speech and misunderstood circumstances, in which I tried to explain the need to divide a pill in some non-Euclidian way that would enable me to take it? Not take it? Take it later? I don't know what I intended. Finally I agreed by Pinkie Pie promise that I would come down from Potiga starting...six hours ago. After a conversation with a nurse on the BCBS helpline we've set a 10-hour schedule with my pills until such time as I can speak with my neurologist and maybe, possibly, get lower dose pills to taper off.

I don't know what happened, really. After my 450mg fiasco I stopped messing with my dosage, only taking off one night when I felt the side effects had started to get on top of the efficacy. That was sometime last week, and aside from that, the annoying Thursday, and being a bit weepy today, I had no reason to think this was coming. I was feeling really good, and just a bit stressed by the mathematical improbability of my ever being able to make a living, when I got hit by this. My only sin against Potiga was drinking half a cup of coffee in half a cup of hot chocolate in mid-afternoon. It kept me up and hyper until late, when the brick hit me.

Anyway, on the plus side the dose I had at 8:35am knocked down my tinnitus as usual, but it still affected me sufficiently that I'm not going to be driving myself to work tomorrow morning. My plan is to taper down as gradually as sense allows, and hopefully to keep some of the progress I have made.

Current Tinnitus Severity:
3 out of 10

Changes in Tinnitus:
I honestly think my scale was off before. I was more a 5 or 6 before Potiga, a 3 or 4 early on, and a 2 this past 9 days or so, up until today, when anxiety has brought it back a notch.

Other Medications/Supplements:
Lentra, Procite-D, Prolent