On Retigabine ...

People say you can get in Spain? They hand it out freely over there without prescription?

It is available in Belgium but doctors prescribe it very reluctantly, if they do at all.

 

Trobalt: warning of effects on skin and eyes
9 May, 2013
Epilepsy medicine retigabine – marketed as Trobalt – may have serious effects on the eyes and skin. People taking this drug are advised to seek medical assistance if they notice any one of several possible side-effects

The warning has been issued by the Food and Drug Administration (FDA) in the US. There, retigabine (branded ‘Trobalt’) is called ezogabine (branded ‘Potiga’).

According to the warning, this drug can cause the skin to turn blue and may cause eye problems that can result in vision loss. It is not yet clear whether these effects are reversible.

The skin discolouration is usually seen after four years of treatment, but in some cases appeared sooner. It is most commonly reported as a blue colour appearing around lips and in the nail beds of fingers or toes. Some people have also reported the discolouration on the face and legs.

Several side-effects on the eyes have also been noted by people with epilepsy taking Trobalt. Some discolouration in the whites of the eyes has been seen. More serious are reports of ‘retinal abnormalities’.

This news might be very worrying to people with epilepsy who are taking Trobalt. Despite this, Epilepsy Action stresses that no one should stop taking their medicine without medical supervision. This may cause withdrawal seizures, which can be dangerous. If you have concerns about your medicine, email the epilepsy helpline or speak to your doctors.

Effect on the eyes
These abnormalities take the form of pigment (colour) changes in the retina, which can lead to serious eye disease and loss of vision. Whether the specific issue with Trobalt can lead to such serious problems with vision is still unclear. However, some people have reported reduced visual acuity. This is a loss of the sharpness of vision, where numbers and letters may become blurred.

 

Oh, I doubt it... it's not even FDA black-boxed, and there are a ton of black-box drugs that have been on the market for a long time.

Trobalt's side-effects profile is worrying from the point of view of experimental use for off-label purposes, but for someone with a potentially life-threatening seizure disorder, probably a lot less so.

 

I'd rather have tinnitus then go blind the risk of taking trobalt are to great.

 

Black box warnings are just that, warnings. I did some research, and apparently there are approximately 300 drugs with BB warnings.

Not only psychiatric drugs but others also carry the label. However, more than 300 drugs carry black-box warning. The Drug Information Center of the Kansas University Medical Center maintains an online listing of all medications that have a black-box warning.


Sometimes, an entire class of drugs carries a black-box warning, as may also be the case with certain psychiatric drugs such as the use of selective serotonin reuptake inhibitors by individuals younger than 25 years of age or the use of antipsychotic drugs by the elderly, or even with the use of antiepileptic drugs.

http://bit.ly/1gorPyw

I called KUMC Drug Info Center and they do not maintain a list per se. Instead, they referred me to http://blackboxrx.com. There is no list, you have to type in every drug individually.

Over 100,000 people die annually from the use of prescription drugs. Many of these are overdoses, usually unintentional. A lot of them are from drug interactions. People die from surgeries that their body can't handle. They die from in-hospital infections. Occasionally, people die from complications from insertions of medical implants, and of course they die from misdiagnoses because medicine is as much art as it is science. Like Billy Idol sings in White Wedding, "There is nothing safe in this world, and there's nothing sure in this world."

If a doctor in the U.S. will not prescribe retagabine for me, I will look outside the U.S. and obtain it without a prescription if necessary. However, I will certainly find a doctor who will give me the required tests before taking the drug and the tests to monitor my health while on the drug.

Edit to add: at blackboxrx.com, if you type in either retigabine, Trobalt, or Potiga, you get the message "No results found." Edit again: Ezogabine has results but you have to pay to see them. One other note on the FDA summary: "FDA is working on modifying the current Risk Evaluation and Mitigation Strategy (REMS) for Potiga to address the risk of retinal pigmentary abnormalities, potential vision loss, and skin discoloration." Their last summary was October 2013.

 

Based on my experience if you're in a large metropolitan area it will probably not be hard to find someone willing to let you guinea pig yourself on their watch.

Be careful before you just order some from overseas, and understand the potential risks and liabilites. For one thing, online pharmacies are notoriously sketchy as far as product quality goes; for another thing, depending on exactly how you obtain the drug, you may be violating several serious federal laws and potentially exposing yourself to felony charges punishable by huge fines and prison time. It is not completely unheard of for people in the US who run afoul of these laws trying to obtain small quantities of drugs for personal use, to have a rather large and disproportionate hammer dropped on them by the DoJ.

Note that Trobalt is actually a scheduled drug in the US; this means that it is not legal to obtain it from an online pharmacy under any circumstances. (Drugs which are merely "prescription only", as opposed to scheduled, can technically be legally obtained from an online pharmacy which follows a particular paperwork trail -- on the other hand, drugs which are scheduled, have the huge and draconian weight of the Controlled Substances Act behind them).

 

Linear, stop scaring the shit out of people. LoL There is no prison time for Trobalt, its not considered a narcotic...its not even a benzo. Worst case scenario, if u fall on an asshole customs agent (if u get searched), it MIGHT be confiscated and u might pay a fine, but thats generally unheard of as u are alllwed up to 3 months supply for personal use. Just dont bring in 20 boxes lol and u will be ok.

 

What's next for you, AM-101?

 

AM-101 is only indicated for early tinnitus.

 

That's okay, @dan, I ain't skeered

@linearb, I wouldn't order from an online pharmacy. I will travel to Spain to obtain the retigabine, but it won't be for a while. My sweet senior dog has serious health issues and requires very attentive care, including specific physical therapy. I just wouldn't trust leaving her with anyone. When things get really bad for me, she's the reason I keep hanging on.

I don't live in a major metro area, the closest one is about 6 hours away. I can understand why doctors would be extremely leery about prescribing an anti-epileptic off-label, considering the risk of liability. I just don't have the funds to go from doctor to doctor looking for someone in the U.S. I'm hoping to find a physician willing to monitor my health even though they're not prescribing the drug.

 

A guy I knew from another forum asked trobalt in usa to no avail and he offed himself.

 

So basically there is no reason to look forward to it for most people on here.

 

Same!

 

I have not seen even one success story.

 

only people that have very severe disabling tinnitus should try trobalt. if you have mild dont even look for it its not needed

 

I could not agree more.

 

You said you did not have impaired vision from Trobalt
Do you have impaired vision from Trobalt?

 

Fortunately no.

 

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!

 

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

 

Thanks for letting me know
So it is possible to take the trobalt and then stop taking it and for the T to be lowered permanently so that sounds very promising indeed!

 

Yep.

 

Did you taper down or did you just stop? please let me know
this is serious as other people have taken it and are doing well

 

I didn't taper off...I went straight off it.

 

ok and you have your sleeping back under control now? you sleeping fine now? thanks danny

 

http://www.ncbi.nlm.nih.gov/pubmed/16652071

Effect of gabapentin on the sensation and impact of tinnitus.
Bauer CA1, Brozoski TJ.
Author information

Abstract
OBJECTIVES/HYPOTHESIS:
This study evaluated the effectiveness of gabapentin in treating chronic tinnitus in two populations: participants with tinnitus with associated acoustic trauma and participants with tinnitus without associated acoustic trauma. The hypothesis was that gabapentin would decrease both subjective and objective features of tinnitus in the trauma group but would be less effective in the nontrauma group.

STUDY DESIGN:
Prospective, placebo-controlled, single-blind clinical trial.

METHODS:
Pure-tone audiograms and personal histories were used to categorize tinnitus etiology as either secondary to acoustic trauma or not associated with acoustic trauma. Participants were restricted to those with moderate to severe tinnitus for at least 1 year. All participants received gabapentin in a graduated ascending-descending dose series extending over 20 weeks (peak dose of 2,400 mg/d).

RESULTS:
There was a significant improvement in tinnitus annoyance for the trauma group (P = .05). Other subjective aspects of tinnitus were not significantly affected in either group. Between-subject variability of therapeutic response was considerable. Nevertheless, in consideration of subjective loudness ratings, 4 of 19 nontrauma participants and 6 of 20 trauma participants showed an improvement of 20% or better. In consideration of psychoacoustic loudness estimates, 3 of 19 nontrauma and 6 of 20 trauma participants showed an improvement of 20 dB HL or greater. Evenly dividing each group into high and low responders revealed significant improvement in loudness at 1,800 and 2,400 mg/day for the trauma high-response subgroup (P = .007). No significant improvement was obtained for other subgroups.

CONCLUSION:
Gabapentin is effective in reducing subjective and objective aspects of tinnitus in some individuals, with the best therapeutic response obtained in individuals with associated acoustic trauma.

 

@Danny Boy
sorry dont see what your answer has to do with my question
really I cant read any more of these technical reports
Please can you just tell me if your sleeping is back under control and you are now sleeping ok as you are no longer on trobalt
thanks

 

Yes I am sleeping ok and I simply posted it as an alternative to trobalt.

 

yes i know about gabapentin - someone I know is prescribed it - he is in uk - he says it lowers his T - however he is now experiencing health issues as he has been on it for a long time
PLUS it has also been shown to have increased T in some people

 

Well, at least trobalt doesn't increase tinnitus.