Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
Retigabine (Trobalt, Potiga) — General Discussion
- Thread starter Mpt
- Start date
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
not all support me, some only just want end information, i am for them mere lab rat nothing more.
@Christian78
Hello Christian,
Thank you for your return because currently you are the only one on the forum to describe all that you feel with Trobalt.
You are very courageous and I hope that your side-effects will be arranged as fast as possible .
I hope your tinnitus will remain slower than before the treatment.
It would be a new victory after @Mpt!
All my fingers are crossing. I will be happy to read you.
Take care of yourself
Hello Christian,
Thank you for your return because currently you are the only one on the forum to describe all that you feel with Trobalt.
You are very courageous and I hope that your side-effects will be arranged as fast as possible .
I hope your tinnitus will remain slower than before the treatment.
It would be a new victory after @Mpt!
All my fingers are crossing. I will be happy to read you.
Take care of yourself
MemberWhy do you need a stranger on a forum to care how you feel? I've already made my decision on retigabine, and have concluded that your experience on the drug is very atypical to what someone can reasonably expect to experience on the drug. My interpretation of your experience is that retigabine at 900mg/day has a profound effect on tinnitus reduction, and that if you have pre-existing brain-related issues they may be exacerbated by retigabine.
I feel bad for the other people on this forum that might find your updates informative (not me). But honestly, you seem to be overly sensitive to what are simply well intention-ed suggestions.
All in all, I do hope that things get better for you.
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
Thank you!
Well today is better. I am on 250+250+300 for sleep, and it is better, still neurosis and depression and a lot of nightmares although I dream I was Borg and were building houses to people i like, and I cure @dan from tinnitus by injection nano probes in his brain lol
.That overdose 2 weeks ago triggered something in head and from that moment i started to fall down, imminently started depression and heavy nightmares, from that night. And then grogginess make you nervous, one becomes so frustrated because you can not say, write , express yourself, and people then become pushy and force you even more to write then ... it is killer.
i will try to lower dosage to reset brain to state it was before "overload". OR it simply can be gray Swedish weather, cold, one cant go out, ride bicycle, and so on...
Well I hope God forgive me for all mistakes I made and sin I made, He knows I am good person, and often stupid naive and.. but I am not evil, and I dont intentionally hurt others. I am really believer and I dont know why did God forsaken me. I would like to help everyone here if I could. But I am just simple person, I am not rich I can just say prayer.
...well I took already too much your time, God bless you and gave you peace with tinnitus.
undecided, I think you can see from Christian's posts that there are a number of factors at play.
What we've seen from experience is that different people respond differently to Trobalt, but with sufficient dosage some positive effect on tinnitus is experienced in almost every case (really I think only Zimichael got nothing out of it after tapering up to what might be termed a therapeutic dose). To date, we have not had any reports of permanent side effects. Even Christian is not talking about tapering off completely but finding a balance between efficacy and side effects. Like you, my tinnitus is now to the point that I can carry on my usual activities without it bothering me much. However, if I had those boxes in front of me right now, I would not hesitate to begin taking the pills. You must start with a low dose, and if you find you cannot tolerate the side effects, you can then stop in a short time. To me, the concern that I might have temporary side effects versus the possibility that I might be permanently cured is no comparison at all.
Now, I am in a position in my life that the important things in my life will still be there if I go into a drug-induced haze for three months. My wife will still cook for me, my daughter will read to me if my vision blurs. In Christian's posts, it sounds like he does not have anyone to rely on in this way, so I can understand that it is more difficult to him to deal with the life-altering effects of taking this drug. You must of course make this determination for yourself.
If you read back through the user experiences, most of the people who have taken Retigabine have had mild side-effects. At this point you can't say what would happen in your case, but again, we have not seen a case where side effects persist are a few days from stopping the drug.
@Christian78, my friend, I'm sorry my posts upset you. We have communicated many times on this thread about how difficult it is for you on this drug and I have always expressed my hope that you will have good success and better experiences. My suggestion to you about the iPhone/Android app was not to baby you, far from it! Yesterday I forgot to take a pill that I should take every morning, and when I saw your post, I thought, "I should find an app to help him, and I will use it to!" I am sure that if I can get a doctor to give me a prescription, I will need help. My memory is bad enough with no drugs to interfere.
I know you are suffering. You are a brave man, I really mean this! Two times brave because you had bad experiences early on and no good effects and still came back to try again. On the forum you cannot see my face, so I can only say to please believe me that I feel for you and I want you to get better. I ask questions because I want to learn, "Is it all bad for Christian, or does some good happen to him?" Maybe you don't believe this, but it is true.
I don't mean to burden you, but it is very helpful that you update us with your experiences, good and bad. Thank you for that. Any advice that I offer is meant to help and encourage. If it sounds like I am trying to make you a "lab rat" and give you "homework", please think, "It is just the language barrier." I think this is true with locoyeti as well. Be well, my friend.
Edited to add, please see James 1:12, 13. God does not forsake you. It is just what Ecclesiastes 9:11, 12 says.
Are you joking or trying to make him leave? His posts are understandable, period
I wish those bloody people from Pittsburgh university would get off their asses and come up with that modified version of trobalt so more of us can try it but with less side effects.
All this tinnitus shit is hard as is but witnessing how little medical people care is even worse
All this tinnitus shit is hard as is but witnessing how little medical people care is even worse
Because this is a support forum first. If you don't care how Christian feels then imo you have no right to ask him any questions.
This is a treatments forum and I am just trying to figure out what is going on with him. I do care how he feels in the sense that I care how every tinnitus sufferer feels - I want to get rid of it. I think he is inappropriately sensitive to people that are obviously trying to help, and wish that he would not threaten to stop giving updates. But perhaps I am rocking the boat by pointing this out.
I called a pharmacy in Milano and the pharmacist told me that to buy Trobalt I would need a prescription. He isn't aware of any "starter packs".
100mg x84pills cost 45Euros with prescription. @Viking
I'm going to call Dominican Republic tomorrow and if they have it most likely you do not need a prescription, since I read an online story of a guy that bought anabolic steroids over the counter there.
100mg x84pills cost 45Euros with prescription. @Viking
I'm going to call Dominican Republic tomorrow and if they have it most likely you do not need a prescription, since I read an online story of a guy that bought anabolic steroids over the counter there.
I have a friend in Italy and he went to 2 pharmacies there, they say you need a prescription too. Here in Spain also, but sometimes the pharmacies prefer to break the law and win more money so if you are lucky you can buy prescription drugs, if someone is traveling to Spain by chance can give it a try, Im not saying you will get but there is a posibility, I can say I bought stuff like Campral, Piracetam, Pentoxyfiline, or Clinadil with no prescription.
When I'm convinced to start i will try in some pharmacies to beg. Now im not totally convinced because my T is mild, doesnt affects me to sleep and i can have totally normal life (except not going to disco). Anyways on my next date with doctor i will explain him and ask for a prescription as he gave me "Gabapentine" the last time, so why wouldn't agree to try this one?. Even my T is mild, i would totally love to get rid of it like most of you would love. If I see one or two more cases like MTP i would totally go for it.
Side effects shouldn't scare anyone are they are temporal in all cases we have and dosage is slowly increasing so in that time one can get used to it a decide if its too much and taper off, is not for-life drug
Not necessary any will have same side effects than christian as it changes in every person, also notice that he got the worst part just after making that mistake so we should learn from his experience and give to the dosage all the importance it deserves, must be super strict with that, a small mistake with that can screw up everything. So I think its a very good idea to use a Android/iOS APP to schedule that, and also put the pills in some kind of calendar-boxes so there wont be a way make a mistake, even with this amnesia side effect. My first worry is if i could make mistake in my job, if could have some months holidays to stay high at home with retigabine would be great
Thank you @Juan Carlos for this information regarding Trobalt in Italy/Spain. Yes I will not be travelling from N.America to beg pharmacies to give me Trobalt without prescription. I don't know what Viking was talking about but it seems that most pharmacies in Italy and in fact in all Europe require a prescription for this drug.
Next stop Dominican Republic.
Next stop Dominican Republic.
yeah, also my friend said it must be an "international pharmacy" in Italy, because in the others didn't even know anything about this drug, not even showed up in their computers. Maybe @Viking could tell us the exact pharmacy where he bought without prescription. Is any posibility the mail send it? or is that ilegal too?
I confirm Dan. For Italian users up to 100 mg no prescription required. I asked, "if a person from another country is in Italian, is the same thing?" Answer: "No way! The drug should be approved even in its country of origin. If you have a serious side effect and goes to the hospital claiming to have Trobalt outside of your country, we risk jail" ... "other issues may arise at customs "..." you try to send it but would be stuck in customs on arrival. "So ... if you are a foreigner (tourist) you can not buy without a prescription from your country and is refundable.
Starter Pack (treatment initiation pack) exists. This is not my invention. http://www.torrinomedica.it/farmaci/schedetecniche/Trobalt_50_-_100_Mg.asp#axzz3I5oyc7Fn
http://www.dica33.it/cont/indexing/farmaci/1378160/TROBALT-50100MG-21+42CPR.asp
As I understood from previous posts about the science behind, 400mg is not meant to make any therapeutic effect on your T. Even that, you got some benefits.
Effect should come from at least 600-900 mg/day to 1200 max. So as I understood you could have more benefit from some weeks on 900 than some months on 400. Now if you cannot cope it or you have responsabilities to attend on that time and its tiredness make it imposible then its such a shame. your take the decision. I dont know if could be a good idea take a bit bigger dose just at night when tiredness wont bother you.
I totally understand you, being under tiredness is a big crap, just let u know that stay in 400 wont cause much more benefit, so I would either taper up or off
De nada! It is indebted. A few days ago, the user 111 would give it a try and I wanted to please him because I have not used the Trobalt (2 boxes), but when I went to my trusted courier (FedEx), he exposed me 2 problems: 1) the carriage in the hold of the aircraft is not chilled might alter the content of retigabine (as well as battery-powered devices are shipped without battery) ... 2) locking problems at customs.
undecided
Member
Damn, I decided to go through with it.
Start at 100mgx3 for 3 days, then 150mgx3 for 3 more days then 300mg for at least a month.
Side effects were absolutely minimal when I was at 100mg, if any.
Hopefully, something good will come out of this. I'll update the user experience form, i'll report any findings here as well.
Here goes nothing.
Start at 100mgx3 for 3 days, then 150mgx3 for 3 more days then 300mg for at least a month.
Side effects were absolutely minimal when I was at 100mg, if any.
Hopefully, something good will come out of this. I'll update the user experience form, i'll report any findings here as well.
Here goes nothing.
@undecided
Best of luck and thanks for keeping us uppdated!
Hope you do not mind me asking:
What type of T do you have? Both ears? How did you get it?
Best of luck and thanks for keeping us uppdated!
Hope you do not mind me asking:
What type of T do you have? Both ears? How did you get it?
- Dec 24, 2013
- 933
- Tinnitus Since
- (1956) > 1980 > 2006 > 2012 > (2015)
- Cause of Tinnitus
- Ac. Trauma & Ac.Trauma + Meds.
@undecided ...Thanks for posting your updated User Report.
Mmmmmm, so the equivalent dose of Benzo (http://www.benzo.org.uk/bzequiv.htm) to what I was using at night for sleep - but no Melatonin in my case. No criticism here at all, but indeed it is hard to not have a Benzo hanging around for most of us....[Though I am fully off now for the first time since 'stage 4 T' in 2012. Sleep sucks but hopefully it will get better]. I am going to presume you are intending to keep that constant unless hear otherwise.
Again, best of luck with your Trobalt, and if things get 'not good' my take is that you can dump it pretty darn fast.
Best, Zimichael
Mmmmmm, so the equivalent dose of Benzo (http://www.benzo.org.uk/bzequiv.htm) to what I was using at night for sleep - but no Melatonin in my case. No criticism here at all, but indeed it is hard to not have a Benzo hanging around for most of us....[Though I am fully off now for the first time since 'stage 4 T' in 2012. Sleep sucks but hopefully it will get better]. I am going to presume you are intending to keep that constant unless hear otherwise.
Again, best of luck with your Trobalt, and if things get 'not good' my take is that you can dump it pretty darn fast.
Best, Zimichael
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