Stu
Member
- Apr 12, 2015
- 16
- Tinnitus Since
- 01/04/2015
- Cause of Tinnitus
- Noise Induced Trauma - Concert
Retigabine (Trobalt, Potiga) — General Discussion
- Thread starter Mpt
- Start date
Member
@Danny Boy
Is this a lasting effect ? or do you have to take each days 400mg of trobalt to get this 0 ?
Is this a lasting effect ? or do you have to take each days 400mg of trobalt to get this 0 ?
While you are waiting for Danny to answer just thought I would pop up and say that you have to take Trobalt every day and at higher levels too.
Usually it is taken not in one go but three times a day so the total daily amount taken is divided into three........but each takes it according to their own understanding and choosing and the amount that they wish to take.
At the moment I take 400mg a day...But oddly enough when I exercise it lowers my t so does having a bath...It may be a circulation issue.
Mine does too. I also thought of that. I have signs of microvascular compression. Have you done an MRI of acoustic canals? It can show such a thing.
are you talking about Keppra?
not mentioning it sounds stupid, just change the sentence "I recommand you ... " for "In my case this drug X improved my T blablabl"
@Danny Boy could we have a brief synopsis of your findings?
You were on 400mg x 3 a day of retigabine and it helped, then you combined it with a quantity of Keppra and it improved even more?
Have you taken Keppra only and what doseage were you using?
You were on 400mg x 3 a day of retigabine and it helped, then you combined it with a quantity of Keppra and it improved even more?
Have you taken Keppra only and what doseage were you using?
I'll quote Viking on this one-
"Small update;
the doctor who prescribed the Keppra on me in december of past year, it being administered to patients who had previously received some relief from the combination of gabapentin + clonazepam. The results seem to be encouraging, especially in the group of patients who suffer from tinnitus unilateral not tonal but white noise, narrowband noise linked with Misophonia or hyperacusis. After 3 months of testing, the maximum dosage of 2000mg per day were obtained the following results:
1) Reduction of tinnitus NOT TONAL from 6 to 3. Disappearance of "tinnitus reactivity". Disappearance of Misophonia (FULL).
Drastic reduction of the headaches associated with iperacusia.The patients have improvement in mood and in their ability to react to their situation of suffering. 2 persons have abandoned the use of SSRIs and are climbing out the use of benzodiazepines.
2) If the tinnitus is tonal, no relevant difference. (not lucky people)
3) If there are hyperacusis or Misophonia, after a month of treatment, the symptoms begin to weigh less on quality of life.
4) In patients who did not obtain benefits, was prescribed the Flexiban (Flexeril ... always cyclobenzaprine), with good results on tinnitus tonal, general tension, hyperacusis and headaches. It is noted that these patients have problems related to the neck or jaw or to the structure of the dental arches. Very common side effects that lead patients to abandon the following therapy are excessive sedation or tachycardia. Flexiban has a structure similar to Tegretol. Both are "cousins" of tricyclic antidepressants such as amitriptyline or nortriptyline that already in the past have been shown to have some efficacy in the tensive states, headaches or migraine, hyperacusis, generalized anxiety.
It is hoped that these results are permanent, in view of a future development of Biviracetam (enhanced version of Levetiracetam x10) who @Danny Boy is most active in the research, the suffers may have some help with a drug already tested and without serious side effects, avalaibilty and low price.
Best wishes"
Tried it, it does nothing. Do a MRI of AC, it is important. I know of other that have similar T with mine, also with acoustic trauma involved and signs of mvc! Perhaps the acoustic trauma makes the existent T from mvc louder, who knows!
So I take 300mg a day ... but isn`t doing much for me atm ... it s split up in 3x ... do you take it at once? i`m looking forward upping the dose
ps: I thought this is helpful to know. I read the paper that comes with the box and this is what I found out.
Trobalt
Maximum starting dose is 300mg a day
Maximum rate of dose increase is 150mg a week
Week 1 _ 3x 100 = 300 a day
Week 2 _ 3x150 = 450 a day
Week 3 _ 3x200 = 600 a day
Week 4 _ 3x 250 =750 a day
Week 5 _ 3x 300 = 900 a day
Week 6 _ 3x350 = 1050 a day
Week 7_ 3 x400 = 1200 a day
when stopping it is good to taper down slowly - they do not mention the rate at which this should be done.
QUESTION for al Trobalt users - did you guys taper up this slow?
Ok, I think i`m going to add 50mg every second day to the daily doses.
So next time in the morning I might take 150 and than 100 - 100 ... 2 days later i`ll do 150 - 150 - 100 ... than 150 - 150 - 150 ... and continue like this ... it`s a bit faster but I`ll keep my eyes on the side effects
So next time in the morning I might take 150 and than 100 - 100 ... 2 days later i`ll do 150 - 150 - 100 ... than 150 - 150 - 150 ... and continue like this ... it`s a bit faster but I`ll keep my eyes on the side effects
So I take 300mg a day ... but isn`t doing much for me atm ... it s split up in 3x ... do you take it at once? i`m looking forward upping the dose
ps: I thought this is helpful to know. I read the paper that comes with the box and this is what I found out.
Trobalt
Maximum starting dose is 300mg a day
Maximum rate of dose increase is 150mg a week
Week 1 _ 3x 100 = 300 a day
Week 2 _ 3x150 = 450 a day
Week 3 _ 3x200 = 600 a day
Week 4 _ 3x 250 =750 a day
Week 5 _ 3x 300 = 900 a day
Week 6 _ 3x350 = 1050 a day
Week 7_ 3 x400 = 1200 a day
when stopping it is good to taper down slowly - they do not mention the rate at which this should be done.
QUESTION for al Trobalt users - did you guys taper up this slow?
I just hit 400mg within a few weeks...Personally, I was like this is either death or just take it. I didn't mind that I was knocked out by this stuff.
Keppra does seem to help...I'm just hoping this combo creates a permanent effect. As you can tell, I'm really desperate not to return to baseline at all costs. Anyway, I've actually done relevtivly well, considering I've had this for 10 months. I mean, I've lowered it to mild tinnitus 0-1, compared to 10/10...I've cured my hyperacusis and reactive tinnitus...I think I've done pretty well and I want other people to be where I am...Which is why I'm sharing all of this.
SO just to be clear cause it still isn`t .. do you take 1x400 ad day - or 3x400 a day or 2x150 + 100 ?
I took 400x3 a day for a few months and now I take 400mg once a day or 800mg if I have insomnia, great sleep aid!SO just to be clear cause it still isn`t .. do you take 1x400 ad day - or 3x400 a day or 2x150 + 100 ?
SteveToHeal
Member
My Trobalt arrived!!!
Two boxes 84 x 200mg sitting on the lounge table. 2 more boxes arrive mid-June.
Now some input from peeps on supplements they are taking / have taken, to protect your organs during the trial. Before i start taking it...
Something for kidneys, eyes and heart? What has everyone been taking as supplements whilst doing the t trial?
Also is it recommended to get any tests done at the doctors before and after ? If so, what ones? To monitor kidney function or anything else?
Two boxes 84 x 200mg sitting on the lounge table. 2 more boxes arrive mid-June.
Now some input from peeps on supplements they are taking / have taken, to protect your organs during the trial. Before i start taking it...
Something for kidneys, eyes and heart? What has everyone been taking as supplements whilst doing the t trial?
Also is it recommended to get any tests done at the doctors before and after ? If so, what ones? To monitor kidney function or anything else?
first and foremost you have to let your doctor check your QT rate ...
read in the warning that comes with the box:
People with a personal or family history of an abnormal heart rhythm seen on a heart monitoring trace (ECG) as a 'prolonged QT interval'.
Read more: http://www.netdoctor.co.uk/brain-and-nervous-system/medicines/trobalt.html#ixzz3YXKF3Nft
basically means if you belong to this group you can drop dead or have a stroke and end up paralised. So no harm in going for a quick check up
Than starting dose is 100 mg x 3 a day .. you already are doubling it if you would take one of the pills form your 200mg ... and dose increase is 50 mg a every 2 - 3 days ... so you would need 50mg pills too.
read the paper that comes with the medicin first.. I already posted a nice schedule according to what this says. You find it a few posts above. I would follow this closely first and than see if you can divert form it. I wouldn`t divert from it straight away. You wouldn`t be the first to have to stop taking it prematurely because the side effects are to much. I would follow the advice as it comes with the box.
also for tapering down you will need 50mg dosages and even 100`s ... best way is to make a scedule and start counting and see how much you need of what.
Hi there all and wonder if i can have some advice please as well.
At the moment I am on 500mg a day and about to increase tomorrow to 600mg so therefore 3 x 200 over the day, my aim is to get to about 8 or 900 a day and see what happens as at the moment I have just entered my fourth week and virtually no difference, can anyone advise if it is ok to mix the tablets together, for example a 200 and a 100 to give me a three hundred dose, any thoughts on this please ?
Thanks,
Freddie
At the moment I am on 500mg a day and about to increase tomorrow to 600mg so therefore 3 x 200 over the day, my aim is to get to about 8 or 900 a day and see what happens as at the moment I have just entered my fourth week and virtually no difference, can anyone advise if it is ok to mix the tablets together, for example a 200 and a 100 to give me a three hundred dose, any thoughts on this please ?
Thanks,
Freddie
SteveToHeal
Member
Thanks Nills,first and foremost you have to let your doctor check your QT rate ...
read in the warning that comes with the box:
People with a personal or family history of an abnormal heart rhythm seen on a heart monitoring trace (ECG) as a 'prolonged QT interval'.
Read more: http://www.netdoctor.co.uk/brain-and-nervous-system/medicines/trobalt.html#ixzz3YXKF3Nft
basically means if you belong to this group you can drop dead or have a stroke and end up paralised. So no harm in going for a quick check up
Than starting dose is 100 mg x 3 a day .. you already are doubling it if you would take one of the pills form your 200mg ... and dose increase is 50 mg a every 2 - 3 days ... so you would need 50mg pills too.
read the paper that comes with the medicin first.. I already posted a nice schedule according to what this says. You find it a few posts above. I would follow this closely first and than see if you can divert form it. I wouldn`t divert from it straight away. You wouldn`t be the first to have to stop taking it prematurely because the side effects are to much. I would follow the advice as it comes with the box.
also for tapering down you will need 50mg dosages and even 100`s ... best way is to make a scedule and start counting and see how much you need of what.
Unfortunately, I don't have the luxury of 50mg tabs. 200mg ones is all i have. So i will have to cut to get 50mg intervals. I know it says don't cut but guys have been doing it and are still standing
This was my dosing plan by day. Start on 150 and then 50mg up till reach a level it starts working.
1. 150 150 150
450
2. 150 150 150
450
3. 200 200 200
600
4. 200 200 200
600
5. 250 250 250
750
6. 250 250 250
750
7. 300 300 300
900
8. 300 300 300
900
9. 350 350 350
1050
10. 350 350 350
1050
11. 400 400 400
1200
12. 400 400 400
1200
13. 400 400 400
1200
14. 400 400 400
1200
Stay on that then dose down:
1 350 350 350 1050
2 350 350 350 1050
3 300 300 300 900
4 300 300 300 900
5 250 250 250 750
6 250 250 250 750
7 200 200 200 600
8 200 200 200 600
9 150 150 150 450
10 150 150 150 450
So a dose up of 50mg every 3rd day and see if it brings t down at certain mg and then stay on it for as long as possible.
I don't have this:
People with a personal or family history of an abnormal heart rhythm seen on a heart monitoring trace (ECG) as a 'prolonged QT interval'.
However, i do see it is recommended to get an eye test.
SteveToHeal
Member
Anyone currently dosing with RTG taking any supplements to minimise side effects?
i.e. Something to protect:
kidneys
heart
eyes
?
Probably a multivitamin:
i.e. Something to protect:
kidneys
heart
eyes
?
Probably a multivitamin:
- Vitamin C, 250 mg
- Vitamin E, 200 mg
- Beta-carotene, 5,000 IU
- Zinc, 25 mg
- Zeaxanthin, 500 mcg
- Selenium, 100 mcg
- Lutein, 10 mg
- Calcium, 500 mg
- Thiamin, 2 mg
- Folic acid, 800 mcg
- Omega-3 essential fatty acids (including flaxseed oil), 2,000-3,000 mg
- N-acetyl cysteine, 100 mg
- Alpha lipoic acid, 100 mg
of course, you are mixing Trobalt with Trobalt, why on earth shouln't do it? are u afraid to mix milk with milk xD
I don't have this:
People with a personal or family history of an abnormal heart rhythm seen on a heart monitoring trace (ECG) as a 'prolonged QT interval'.
However, i do see it is recommended to get an eye test.
Well you only know if you have it if you ever done this test .. my grandmother has a pacemaker, my brother has a sportsheart and I have a very low heartbeat. So I checked it and my QT was fine. However there are stories of sporters and runners who are super fit and suddenly they just drop dead during a game or a run. They have this prolonged QT interval and the heart rithm just get`s mixed up. If you go to the doctor I would ask for it. It takes 5 minutes. I went to the doctor and asked for bloodtest and meanwhile taking the blood he did this test. Easy enough. I think the eye thing is far less a worry because that only happens with longterm use.
about pill splitting:
http://www.webmd.com/a-to-z-guides/features/pill-splitting-when-is-it-safe-when-is-it-unsafe?page=2
Ps are those days or weeks you have numbered?
MemberMy advice would be to discuss this matter with your own doctor.
All the best -
stephen nagler
Trouble is Dr Nagler - what do you do if your own doctor refuses to discuss it with you? What then? this exists in many cases including mine. No response, nada...........
I even sent a full and thorough email to a top professor who is giving a new therapy anti T with apparently great results. Part of this new treatment include the use of anti epileptic drugs in treatment for T. He did reply to my email with one line -- utterly ignored my questions and email and just said I can see an ENT! So what to do then? So frustrating and getting nowhere fast!
As if as I didnt know that I can see an ENT! Heavens I was writing to him a top well known professor in this field so why would I not know that I can see an ENT - what is wrong with these doctors / professors?
SteveToHeal
Member
They are days I have numbered. So day one and two start on 150mg. Every 2 days go up 50mg. But now i'm worried about splitting the pills as these 200mg ones don't have a line down the middle so could fall into the category "don't split". Anyone on here who has split the pills with success? i.e. not the actual cutting of them. I can get a pill cutter to do that. But anyone here that has split them and had less-than expected results? Irritate stomach lining or worse? Anyone on here had success splitting and taking? Otherwise, i'll have to start on 200mg 3TID and jump up to 400mgTID.
This way you are not going up 50 mg every 2 days but 150 mg every 2 days ... the guidelines say.. increase by 150 mg per week ... that means you can add 50mg per every 2 days to your regime.
I`m sure others will say this is too slow but i`m just trying to give the clearest message possible here. And I already said the same thing in a few posts before so it just shows have easily things are misunderstood and misinterpreted and I also think you have n`t read the paper that comes with the box?
which should be the first thing you do when you are using medicines.I started with 100 x 3 ... the first time I took 150 I was high, smiling and whistling with a grin on my face for over an hour. I can imagine if you up the doses this fast it`s going to be a nice merry go round for you. You really have to let the body adjust to these new compounds in the brain.
jumping from 200 3TID to 400 3TID is just not done imo. you`ll go from half the maximum dose straight to the maximum dose ... that is asking for problems I feel ...
undecided
Member
I've split pills numerous times (both the 300mg and 200mg flavors) and had no problem with it.
Two parts of a 200mg pill have the same effect as a whole 200mg pill, at least for me.
Two parts of a 200mg pill have the same effect as a whole 200mg pill, at least for me.
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