Retigabine (Trobalt, Potiga) — General Discussion
- Thread starter Mpt
- Start date
MemberNo. One reported muscle tremors at 600 mg.
The one with 1200 mg was ok.
I guess if you search the web, you will find some epilepsy forums and side effects.
I've found a 2010 presentation on Retigabine by Valeant Pharmaceuticals.
Notably, under mechanism of action (MOA), the page is blank. (See p. A 13). Not having a known MOA is not a deal breaker (see here), but it could be in the case of the ATA petition.
Though presented in 2010, the report below appears thorough with then-known side effects, including urinary retention and cardiovascular issues. There's lots of interesting information, and it is worth a read by everyone interested in Retigabine. (BTW, most of this information has been posted on this thread, but at 90+ pages, it's good to include some redundancy.
)
Of course, not all side effects/adverse effects are listed and were probably unknown as of 2010. In 2013, the FDA issued the black box warning on Retigabine, and I believe the EU has issued a similar warning. This is why Retigabine is so hard to get.
For the 2010 presentation, see the attachment below.
It can also be accessed by this link:
Notably, under mechanism of action (MOA), the page is blank. (See p. A 13). Not having a known MOA is not a deal breaker (see here), but it could be in the case of the ATA petition.
Though presented in 2010, the report below appears thorough with then-known side effects, including urinary retention and cardiovascular issues. There's lots of interesting information, and it is worth a read by everyone interested in Retigabine. (BTW, most of this information has been posted on this thread, but at 90+ pages, it's good to include some redundancy.
)Of course, not all side effects/adverse effects are listed and were probably unknown as of 2010. In 2013, the FDA issued the black box warning on Retigabine, and I believe the EU has issued a similar warning. This is why Retigabine is so hard to get.
For the 2010 presentation, see the attachment below.
It can also be accessed by this link:
- Oct 22, 2014
- 240
- 40
- Tinnitus Since
- 10/2014
- Cause of Tinnitus
- Acoustic trauma (club drumming)
Spanish pharmacies are not guaranteed sources. I dug deep on my friends and finally a retired friend of a friend went to two pharmacies in/near Fuengirola (south of Malaga where all the cheap flights go).
Neither knew what Trobalt was until they looked it up. No dice.
Neither knew what Trobalt was until they looked it up. No dice.
SoulStation
Member
I want a cure as much as the rest of you, and have taken some very silly things in the past. I could if I wish get a prescription for this today. But I wont. This is a VERY dangerous drug the long term danger to your health and the side effects can be dreadful. I have 3 Dr friends who have told me this. Some people are trying to take legal action for being given this against there will. My advice is DO NOT TRY IT. T is bad enough,but this can really screw you up BIG time.
Thanks the lord for that. I have 3 doctor friends two of which are GPs and one is a consultant anaesthetist (he knows a bit about drugs) that has read this and said it is just down right stupid.
And yes @locoyeti I do but I would not tell you how I know on a open forum.
i call bullshit. i don't think you really have a solid understanding of this drug or its effect on a molecular level, and i doubt your doctor friends do either. who on earth has to take any drug against their will. ridiculous. really, the scaremongering of late has been disappointing, mostly because it is ill-informed.
i read about 40 related science papers (some of them multiple times). i read Kandel's graduate level neuroscience textbook to get a solid understanding of the underlying science. i didn't take my decision to take retigabine lightly, i wanted to know as much about Kv7 channels and retigabine as possible. i was prescribed lorazepam (a benzo), a month or so into my tinnitus by my GP, who said it would help with my sleep and anxiety. i looked into it and decided that it was not a good idea in the long term to take it, and instead relied heavily on the emotional support of my family, and other creature comforts. i don't want to go blind from retigabine, and i don't want to become a zombie, but the risks seem rather minimal on a short course of this drug (3 - 4 months). i think taking retigabine for over a year would be a different story.
i've said my peace... let the scaremongering freak-out fest continue.
Oh well it is your own health you are messing about with. 9 years in medical School and 15 years in practice and has put 10s of thousands of people to sleep and had not lost one yet I know who I will trust. I am not commenting on this again.
SoulStation
Member
I have make 3 attempt with retigabine and i'm sure that in my case, the sudden kidney and bladder problems, are related to this promising drug. I had to stop it. I hope that soon we may have a drug that is not so dangerous to health. I am deeply sorry for my failure but I could not continue.
@Viking back in august you said this:
Retigabine (Trobalt, Potiga) — General Discussion
can you clarify this? it seems to me that you had kidney issues well before the drug. did trobalt exacerbate what kidney problems you already had, or did it create new symptoms?
Yes I will clear. During the first attempt i have a pre existing problem of little kidney stones. The hypothesis was that the trobalt could give it in evidence. Solved the problem to the kidneys with alfalitic drug and drinking lots of water ,I was subjected to a second ultrasound control and the problem was solved. Then restart the trobalt and after 10 days i have painful urination 8and frequent urination). During the clinical visit, there was an evidence of enlarged prostate benigne with slight inflammation. I had stop the trobalt to verify if the condition return to his normal function. After only 2 days without trobalt the condition disappeared. Then after other 7 days i restart for the third time with trobalt.... the same results after dosage increasing, then i (and doctors) was sure that the condition was related to the retigabine treatment. Unfortunally...
Hope to be clear and useful
Best wishes
I raised to 150x3, i feel good but on monday will visit my gp to check eyes and kidney just be cautions
- Jun 26, 2014
- 2,264
- Tinnitus Since
- 11/2013
- Cause of Tinnitus
- Drugs barotrauma
SoulStation
Member
- Aug 14, 2013
- 2,455
- Tinnitus Since
- Resolved since 2016
- Cause of Tinnitus
- Unknown (medication, head injury)
There are many dangerous drugs in use today.
Take the long effects from the use of steriods for immunosuppressive "therapy" purposes; take chemo-"therapy"; take all the "rubbish" being handed out within the field of psychiatry. Plenty of examples. And plenty of side-effects.
In all cases, it is a balance between side-effects and the suffering of the patients.
A Trobalt study could be used to identify treatment options for a target group defined as eg. people with "catastrophic tinnitus" and could help identify side-effects as well as the curative aspect of the drug for eg. a 3-month period. That's why it is called a "study".
That said, I do not necessarily disagree with your points-of-view.
Thank you for giving us the full picture, Viking. Can we say that in your experience, once you stopped the drug, the side effects went away? I see you say the normal function returned. Do you have any reason to believe there was lasting damage?
My plan right now is to propose a urine albumen test to my doctor who I am going to ask for Potiga on Tuesday. Any idea how often one would have to repeat the test to catch a kidney problem before it became severe, like in Ricardo's case?
And on another topic entirely, from the User Experience thread.
NGC891 said:
Ha! Retigabine is like a box of chocolates, you never know what you will get.
EDIT:
I thought of something else that I've been wanting to ask and keep forgetting. Has anyone who has tried Retigabine experienced relief of some co-symptoms of tinnitus like aural fullness, ear pain, etc.?
Dear Friend;
the kidney and bladder problems was solved with stopping the medication. It was not permanent. Disappear in 2 days or max 1 week. performing a urine test, the only value "altered" was their high acidity and dark color.
Before the second attempt i was according with my urologist to check the kidney every 20 or 30 days to monitoring the correct functions.
Others minimal side effects were: Dry mouth, want to water (thirst), slight anxiety, slight confusion. 100mg/die
I later found that these effects tended to disappear with increasing dosage 100x2
At 100x3 I began to feel the positive effects on the calm of tinnitus and disappeared headaches (probably related to the tinnitus stress).
At 100 + 200 +100 i have the most important (in my little experience) clinical effect on tinnitus. Right side full free. Left side was moderated. But on this dosage i have an important side effect (negative) the duration of a couple of hours: i was in a state of stupor. Example: i was driving in my city I had the impression of not being fully attentive. I was too relaxed. Drive slow , reflexes were slowed but i was not in "panic". Totally anxiety free. A strange condition. This happened after the dose of 200mg to lunch with a full stomach. With the 3rd dosage of 100 at dinner there wasn't those effect but only more more drowsiness and slight blurried vision on long distances during the night.
I would like to say more but I could not continue the therapy. In any case, most doctors I consulted on the topic, and the problems related to the eye, kidneys, bladder are not irreversible, considering the low dosage.
What happened to ricardo?
one last thing: about retinal pigmentation, I have been told that this happened only after years and years of therapy with high doses (1200mg / day) and in patients with other problems such as diabetes or liver problems synthesis compromise by the concomitant use of others anti-epileptic drugs.
keep me updated!
Ivan
@Danny Boy
So happy for you, it's so encouraging that it had such an effect on you even on a relatively small dose.
Maybe it's got to do with chronicity of tinnitus, the earlier the better!
So happy for you, it's so encouraging that it had such an effect on you even on a relatively small dose.
Maybe it's got to do with chronicity of tinnitus, the earlier the better!
I reckon so. And age might be a factor too, as the older we get, the less plasticity are brain is.
How do all of you work with the reported side effects? I'd be interested in potentially trying this if AM-101 doesn't do the trick, but I'm worried that I won't be able to function at work. I'm able to do so now, but it's exhausting.
Thanks again for that thorough explanation. Ricardo suffered renal failure, with subsequent recovery of kidney function after stopping Retigabine. He is hoping for a full recovery but it's too early to say if that will happen. I agree on the retinal pigmentation changes. This seems to be confined to long-term users, though GSK said in their warning that they can't be sure when it sets in. On the other hand, they are also not sure it causes vision problems.
I will follow this plan if I get a prescription. Thank you again, Ivan! Anyone on the drug, please consider doing the same.
Last Saturday I had a very similar story. Never realized before it reduces my reflexes. On saturday I had a wedding at 20h, its the time of my pill - 150mg, so I took it at home just before leaving, with empty stomach. I started driving to the place, and in the midle of highway I started to feel that my reflex -reaction time- was reduced, i have to admin i was a little scared, but nothing bad happened finally, just almost missed the entrance of the restaurant.
Sunday I was driving also and everything was fine. So one advice: dont take a pill with empty stomach just before driving. Empty stomach makes a big difference
undecided
Member
Some bad news here.
It's been three weeks of using Trobalt, I don't seem to have any significant or permanent improvement.
After I take my dose, the noise is definitely reduced about 70-80%, no doubt about that.
However it comes back after about 2 hours and it appears aggravated.
I should note that my T is mostly pulsatile/somatic, therefore I wasn't expecting any miracles.
It is obvious that retigabine works for a short while but not for my kind of tinnitus, it's like an aspirin that wears off quickly.
I'm not off the drug, I'll finish my supply tapering down.
The silence that I get is certainly nice, but not in the long run.
I'm having an ENT appointment today, the doctor (Aristides Sismanis) is experienced in pulsatile tinnitus.
Maybe I'll get a diagnosis, maybe he'll refer me for an MRA. Probably I'll get the "live with it, where is my money" type of meeting.
Oh well, my luck hasn't been that great for 2014. I guess I was expecting too much from retigabine.
It's been three weeks of using Trobalt, I don't seem to have any significant or permanent improvement.
After I take my dose, the noise is definitely reduced about 70-80%, no doubt about that.
However it comes back after about 2 hours and it appears aggravated.
I should note that my T is mostly pulsatile/somatic, therefore I wasn't expecting any miracles.
It is obvious that retigabine works for a short while but not for my kind of tinnitus, it's like an aspirin that wears off quickly.
I'm not off the drug, I'll finish my supply tapering down.
The silence that I get is certainly nice, but not in the long run.
I'm having an ENT appointment today, the doctor (Aristides Sismanis) is experienced in pulsatile tinnitus.
Maybe I'll get a diagnosis, maybe he'll refer me for an MRA. Probably I'll get the "live with it, where is my money" type of meeting.
Oh well, my luck hasn't been that great for 2014. I guess I was expecting too much from retigabine.
Im sorry mate. As I understand (correct me if im wrong), Pulsatile T means Objetive T. That means that the sound is Real. Some vein is interfering in the ear and you can hear that on every heart beat. It's totally different from subjective T, on wich the sound is not real, its just electrical activity generated by hyper-excited neurons (the most of us have this kind of T), here is where Retigabine helps.
I dont see a reason that Retigabine whould help to objetive T unless something related to blood pressure
I dont see a reason that Retigabine whould help to objetive T unless something related to blood pressure
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