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I have extreme chronic neuropathic pain in my head and face, that no drugs previously touched, but Retigabine has helped bring the pain level down. I also have very mild visual snow along with tinnitus. Half hour after taking it the drug kicks in, I feel drunk, and all my senses get heightened...

No idea if the violet/blue side effects are accumulative. Got another question to add though! Is the skin staining caused by the colouring in the pills? All the pills in their various sizes, other than the 200mg have indigo colouring in them. One other thing I've noticed by accident in the...

Progress Report Progress Report Date: Mar 26, 2015 Current Retigabine Dosage: 200mg x 3 Current Side Effects: Around 20 minutes after taking it, I feel quite drunk. This lasts for an hour. The best side effect is that the levels of my previously untreatable neuropathic head and face pain have...

I know this is an old post, but i've been thinking a bit today. I've been taking Retigabine for neuropathic pain in my face and head, and tinnitus which started at the same time, so must be related. It's working great for my pain levels, and helping a bit with the tinnitus too, although i'm not...

Progress Report Progress Report Date: Feb 16, 2015 Current Retigabine Dosage: 150mg x 3 Current Side Effects: I feel a bit sleepy/drunk for a while about an hour after taking the pills. I also feel happier, but i'm not sure if thats a direct or indirect side effect, because its also having...

Great news that you finally found out what's wrong with you! I hope the surgery doesn't hurt too much x

Hey @Zimichael :) I've been taking half a Primidone pill for months, because a previous epilepsy drug left me with a very noticeable tremor, I look like I have Parkinson's without it. Yeah the Dosulepin is a tricyclic, and it was the only drug I'd tried in 18 months that knocked the horrific...

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...

I've only taken a few low doses so far, and no effect on tinnitus yet. I'm so scared I'm speaking too soon but... my neuropathic pain has already dropped to a lower level. If the tinnitus stays but the pain completely goes away, I'll still see it as a huge success. I've been in constant pain...

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...

Hi @SteveToHeal I know it's a lot of money, but last year I saw a neurologist who wasn't a patch on Dr Weatherall, and I paid £350 for half an hour. You get an hour for £295, he's very thorough, and a really nice person too, the best doctor I've met.

I still can't see the link! Might be because I'm on an ipad, I'll have a look on my proper computer. I've been seeing my neurologist for months because I've got chronic pain as well as tinnitus. A few weeks ago I mentioned Retigabine, took a couple of print outs from here and he said he would...

Oh... P.s... How do I post a new user report?

Nothing important to add yet, but just wanted to say I now have a prescription and will be starting in the next few days. :)

(n)Someone dug up a dead one?

Don't want to scare anyone, but I tried notched white noise from a website a couple of months ago. It gave me a new tone of tinnitus in my previously "good" ear. It might have been because I had trouble matching the frequency though, and got it wrong.

Hey @Viking , how long roughly is the waiting list for appointments? You've given me a little hope that one day I might be ok. I have severe neuropathic pain in my face, teeth and head, as well as tinnitus and tremor. I wonder if I'll be left with much brain after frying all those problem...

Hey @tomm I'm a bit different because my tinnitus started at the same time as chronic nerve pain in my face and teeth. My GP said she hates epilepsy drugs! I'll send you a private message because I don't want to take the thread off topic.

@tomm @Danny Boy I think in the UK you'd probably need to see a neurologist to get Trobalt. My GP admitted to me that they don't know much about epilepsy drugs, I had to see a neuro to get the 4 epilepsy drugs I tried. They can be dangerous if you get the dosage too wrong, I have a permanent...

Another thing I used to do was listen to sleep hypnosis videos on youtube, they worked pretty well during the worst times.

I don't know anything about pillow speakers, but I used to use sounds from www.mynoise.net to mask. Now I'm on so many drugs I fall asleep without any masking! *edit... Prescription drugs, in case that wasn't clear haha*

Hey Danny, here's a free website with something similar. http://www.generalfuzz.net/acrn/

@Mr. Cartman you're an expert with this kinda thing... :)

Great news that your pain level has gone down. Nope, no proper explanation yet. My first neuro said it was a spinal fluid leak, the second- migraine or NDPH, the third thinks it could be related to herniated discs in my neck. I'm seeing him again soon so I'll ask.

Hi @Mike34 I've had similar problems for just over a year, tinnitus in the right ear which appeared at exactly the same time as the nerve pain on the right of my face and back of my head, pressure and pain in my ears. I'm on my 3rd neurologist, but this one is great. Bit of a long story but I...

Great news that your pain level has gone down. I'll have to try the zinc and magnesium :). I tried acupuncture a few times but it REALLY hurt on my right side and made me cry! I took Topiramate months ago which I think is what made the tinnitus worse. I also find the more stressed I get, the...

Hi @Scicia, is the nerve pain in your face constant or does it come and go? I have constant pain in my face and teeth, as well as tinnitus. It all started at the same time so I think it's all related. My own T has gradually got louder over the past year, and more tones have appeared. I'd...

That gives me hope that one day I can switch off my neuropathic face pain. It started exactly the same time as the tinnitus so they must be linked.

http://kel77.tumblr.com

I'm not a doctor and it's probably already been mentioned in the 50+ pages of this thread, but I just want to say to anyone thinking of experimenting- with these types of drugs you have to be so careful, start low and if you need to increase do it very very slow, they can take weeks to start to...

I haven't taken Retigabine for tinnitus, but I have tried 4 different epilepsy drugs for pain. Each of those drugs had to be slowly tapered up after a little while to continue working. Maybe it could be worth trying a small taper up before giving up.

@UserID thanks David, it wasn't always that pretty. I've owned it since I was 19 (16 years), and it was rotten, full of newspaper and chicken wire. My first car was a beetle, I've only ever owned VWs. I don't have the problem of too much heat being in the UK! I always wanted to go to a VW show...

Hi @Karen my first doctor ditched me soon after, another couple of doctors said I'd never had a leak in the first place... Apparently, sometimes when you bump your head it can set off a pain cycle in the brain that just can't switch off. I guess it's kind of like tinnitus really.

Hi @Della, sorry to scare you! No, I wouldn't say leave it alone. I think he's doing the right thing suggesting to check the pressure first. In my case, my spinal fluid pressure wasn't checked before pumping more fluid into my brain, and my MRI didn't show any sign of a leak. If you really do...

Thanks Karen, My face and teeth nerve pain is near enough constant, but just recently due to trying yet more new drugs I'm finally getting some relief from the original headache, the pain isn't anywhere near as bad as it was. Nothing totally takes it away, I haven't been pain free for over a...

Hi @Penelope33 , not sure if you're still around on here, but I just wanted to say that I also had a blood patch for a presumed spinal leak, as I'd had a chronic headache for a few months at that point, which no drugs touched. My tinnitus came on immediately after the procedure and has 3...

I love animals, I don't know how people can abandon and mistreat them. This is Lily, I adopted her last year, at 11 weeks old. By that time she had already been in 3 different homes, poor little thing. 2 months later I became seriously ill in extreme chronic neuropathic pain after bumping my...

I've been on Gabapentin (for face nerve pain and headache) since November last year, but it didn't do anything for my tinnitus. And not much for the pain either! Topiramate (another epilepsy drug used for pain) made the noise worse.