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What do you mean by easing the tension of HPPD? I got off neurontin because it was compounding my brain fog and decreasing mental clarity as well as short term memory... It is gabapentin, not gabetin... Don't mean to be a smart ass, but I thought you should know. Also, it will likely help with any benzo WD because it works on GABA, hence the name, gabapentin. It has a ceiling dose and it actually causes minor benzo-like withdrawal when use is discontinued.If Neurontin works for you, Lyrica (pregablin) is a somewhat stronger version. Never been prescribed but when I have taken Lyrica it seemed to be a much more potent drug as far as being an anxiolytic. Also... Did your visuals not decrease at all when you took it? What about taking a benzo? Barbiturates and benzos have done wonders to decrease the intensity of visual stuff... But for a lot of reasons I am off of them now, not going to go into it... Long story short, they are addicting and they compound the mental side of HPPD. For me anyways.

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Lyrica was ok but not nearly as effective as "gabapentin" lol.

''What do you mean by easing the tension of HPPD?'' Feels like I'm taking a mild muscle relaxer, plus anxiety has gone down a bit. It even helps my sleeping cycle which is a major problem for some of us.

It does make my brain fog a little worse and a bit of increased visuals, but I don't mind considering how much pain I'm in. Again I'm taking this for sport injuries and back pain, but it's had an unexpected positive impact on my hppd.

I'm not at all wanting others to try it, I just wanted to know how others have reacted to this med.

I should of made the title of this thread has gabapentin helped anybody else? Btw you are a smart ass but you obviously know what you're talking about so I don't mind ;)

About benzo's I've been on klono way to long. It made hppd rather easy to live with. But of course eventually you hit tolerance and that's where I'm at. I'm scared to even think about getting all the way off it. Take care!!

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Wow gaba made your visuals worse? What about clonazepam? I didn't really notice much change with my visuals... If anything they were slightly less intense. How long have you been on it? Like you said, it helps with the sleep cycle... Increases GABA, indirectly decreases histamine, nitric oxide, glutamate, etc. The sleepiness I experienced went away with about a week of taking it... Before the sleepies wore off, my visuals were somewhat intensified by gaba and barbiturates (pretty much old school benzos)... But after I got over the "sleepy bump", my visuals were diminished, albeit not a lot. That is good to hear you got of Kpin, man! It seems like benzos rarely work out in the long run. Good luck getting through the acute withdrawal! After a week or so (at least with alprazolam i.e. Xanax), the acute WD is over and PAWS starts to set in... But it should only be intense for about two weeks, I don't know for sure but I remember reading that it has just a little over twice the half life of Xanax... this means that the withdrawal will be twice as long, but not as intense. I would recommend staying on gaba at least until you are well through the withdrawal. There is a seizure risk, I have had one big one from alprazolam WD combined with methadone WD on the way to the hospital... Not fun, it was a long time ago and I still am not functioning at 100%.

As far as not wanting others to try it, I understand. I didn't feel like you were saying that at all. I was just throwing in my own anecdotal experience, just like you were. And yeah the tolerance builds up quickly. Again, good luck with everything. Best wishes

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I've been taking 1200mg of Gabetin (Nuerontin) for the last month. It's not only helping my fibro and other pain due to sport injuries. But it seems to help ease alot of the tension from hppd resulting in less pain.

Thx Visual for talking about this drug before, I would of been to nervous to try it if you didn't.

It's also helping with my klonopin wd's a bit :D

Glad this is helping. It can be a useful med and has low toxicity and minimal tolerance issues.

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  • 2 weeks later...


Amitriptyline is a tricyclic and tricyclics are 'dirty' (affects at lot of neurotransmitters). That sounds bad but usually works better with our types of problems (complex). Curiously, Parkinson's people generally tolerate tyicyclics well (but not SSRIs). I've used 10mg before bed and it helps sleep. While one visual feature was affected, it didn't cause serious problems (again I've used only a pediatric dose)

So, don't be afraid to try ... just start with small doses. It wouldn't be for HPPD overall but rather insomnia, anxiety and depression. If you take large amounts it is blunting - makes you feel like being 3rd person.


You notice effects within hours. When I started, I was curled up in bed 20 hours a day for a few weeks (losing 3 lb a week). Two doses (300mg each) and a day later, was no longer in this state - merely felt like the snot had been beaten out of me (which, of course, it had). Within a week was using 1800mg per day. Over the course of 2 years have reduced this down to occasional doses (PRN). Just got a 100mg prescription to be able to use smaller amounts more easily.

Never found dependence like typically with benzos. And its action is reminiscent of benzos but adds relief from nerve pain. However, as with all anti-siezure meds, taper slowing (don't 'cold turkey') - this can be done fairly quickly. When tried to get off after about a year, started going in to the 'curled state' ... so resumed moderate doses. The 'dependency' was to original condition still needing to be treated. [Note: several doctors have warned me that Lyrica has dependency issues that Neurontin (Gabapentin) does not]

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Thanks for your advice.

I don't think I can justify risking amitriptyline due to its effects on serotonin as a SSRI, when there are other options available.

I wanted to give my body a chance to heal before trying any meds, but the nerve pain is getting too much. I have lots to do but I can't sit down for any extended period of time.

My doc seems to think the nerve pain is related to everything else that is going on. She thinks I'm 'hyperaware'. I do think that's possible, since the nerve pain occured at a similar time to all my other symptoms, but I am wondering whether something else is going on since don't really see anyone on here talk about nerve pain related to their HPPD. Of course, HPPD effects everyone differently.

I'm considering whether to just go on Keppra, since if it's related to HPPD that theoretically could help, and in any case I've seen studies showing Keppra to be useful for neuropathic pain. I don't have any real issues with anxiety or depression, so I'm not fussed about that side of it.

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Certainly - the type of pain sometimes alters, but it's mostly a very uncomfortable burning sensation at the top of my thighs. Much aggravated by sitting down for long periods of time. But if I touch my thighs to find any source of pain or to see if there are any sensitive areas, it appears normal. Sometimes they feel as though they perhaps have a kind of slightly thumping ache as well. The sensations are hard to describe, but burning is probably the predominant feature. I had an EMG done but that was for muscle twitches. Might ask for a nerve conduction test and EMG on the affected area.

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Sorry Visual, I did write a reply to this before, but then my internet browser crashed on me and I lost it. I’ll give an overview of perhaps some relevant symptoms.

Non visual symptoms for me started around the same time as a severe worsening of symptoms. I have had a very mild case since September (visual snow and cell-like floaters when looking into the sky), which turned into a moderate-high case in December, when over the course of a couple of weeks I developed a whole host of additional symptoms (both visual and non-visual).

First came the muscle spasms. Maybe this had something to do with anxiety related to the worsening of my symptoms, because they are now mostly gone. At the same time I noticed an increase in tremor. I say an increase in tremor because I’m sure I’ve always had a slight tremor, probably something known as essential tremor which is a benign condition. I know my brother’s hands shake, and my uncle’s do too. I also remember thinking years ago I could never be a surgeon because I can’t keep my hands still. This is much better now. Again maybe something to do with the original anxiety – cutting out caffeine may have had a part to play too.

Around the same time the tremor started to get better I started to get twitching in my left hand and left foot. The left foot twitch resolved itself over a couple of weeks.

For over 2 months now my left hand has been having a muscle spasm on the left hand side near where the hand meets the wrist. Non-stop. When I mentioned muscle spasms / twitches to the neuro she said it was probably benign fasculation syndrome. I read that this often occurs after the immune system has been fighting something. I was feeling very ill for a time with weird headaches and tiredness, which is much better now.

Also since the same time my left hand/fingers have felt very twitchy. Seems like it might be related to the constant muscle spasm I have in my left hand, since when that gets worse, it seems as though the twitching gets worse. Mostly the fingers just feel twitchy without any noticeable twitches, other times slight twitches are present. Sometimes (not all the time), if I put my hand in certain positions I can get the fingers to shake uncontrollably. Often if I hold something in my hand it will have a spasm / twitch / shake to it. Extending my fingers as wide as they go makes all these symptoms worse. There seems to be no problems when my hands are at rest – no tremor, spasms, twitches, shaking.

I have the same muscle spasm / twitching / shaking / spasm in my right hand as well, but it is to a much, much lesser extent. I’ve also noticed if I extend my toes I can get them to start making involuntary movements similar to the ones I describe in my hand.

Seems like I may have escaped the DR/DP aspect of HPPD, but at the same time developed some other annoying symptoms of my own.

It’s a bit concerning considering possible dopamine aspect of HPPD. I’m going to try and sweet talk my reg doc into letting me try Sinemet for one week ahead of my visit to the neuro later this month. She seems much more on my side than previously. Let’s hope it doesn’t resolve the fasculations (for obvious reasons :P )

I did write a much better reply to this before, but I’m having a little bit of brain fog today.

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I say an increase in tremor because I’m sure I’ve always had a slight tremor, probably something known as essential tremor which is a benign condition. I know my brother’s hands shake, and my uncle’s do too. I also remember thinking years ago I could never be a surgeon because I can’t keep my hands still

Yep - this is my history too. One nephew was a dentist and had to quit. It is hereditary seen only in male members of the family.

Essential tremor is a bit odd in that there are about 20 different types of it. Also, it often responds to Propranolol and even alcohol and very rarely responds to Sinemet ... the latter is often used to diagnostically distiguish between early Parkinson's verses ET. Also, ET is near always bilateral whereas PD often is more prominent on one side/areas (unilateral).

Coffee has no effect for me. But anxiety did. Low blood sugar and/or low protein are the biggest things that increases ET shaking.

Around the same time the tremor started to get better I started to get twitching in my left hand and left foot ... Sometimes (not all the time), if I put my hand in certain positions I can get the fingers to shake uncontrollably

Yes and this developed a couple months after visuals started. This will change depending on, not just an 'unstable' position but also the weight in the hand - empty verses holding a mug. If hands are at rest - no tremor.

Some of this gets complicated - I have 3 movement disorder diagnosis - RLS, mild ET, and mild Parkinsonism (this being connected with HPPD stuff)

Let’s hope it doesn’t resolve the fasculations

Don't be afraid if it does. Given our possible similarities, I would predict that at first you will find benefit but also a 'shifting' of your tremor/spasm symptoms. This is not bad (nor does it mean you have PD). It would be a natural responce of the brain readjusting to having enough 'fuel' for a change.

As far as tremors, twitching and fine muscle control - these changed with me ... and whenever changing dosages there would again be change/adjustment. One neurologist freaked out and told me that levodopa was a dangerous drug and even causes healthy rats to shake. Another said, "Your brain has to relearn what is normal" and that my experiences were very positive signs (no wonder some people just give up trying to get better). And of course Jay's neurologist said that it is safe to take low dose Sinemet even for life.

Over time, these fluctuations with dosage changes became less and less so that now there is very little change. Also, depth perception did the same changes. Started with 2D vision, then super 3D vision, then variations of how 3Dish. Now there is very amost no depth changes with dosage alterations ... but there is some depth shifting with Gabapentin dosages.

Through it all, it was clear from the start that progress was being made. I tell this so you to encourage you - so don't worry :P

Do you have any changes in sence of taste or smell?

Do you have spasms or tightness in the center of your back?

Do you have mild coordination difficuties (a bit clumsy)?

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Yes, seems we do have lots of similarities in this respect. Weight in the hand makes a difference for me as well. All these symptoms seem worse when I turn my hands upsidedown.

I did consider RLS in relation to uncomfortable sensations which I have in my legs, but the more I read about it the more it became apparent that this is not what I have. I've read that Sinemet can make RLS worse, although I'm sure you know all about this. Seems it's possible the burning sensations may nevertheless be a dopamine problem - some people with PD experience this.

I am concerned with regard to levodopa-induced dyskinesia that occurs with long term use, although as you say side effects are less with lower doses.

Are you saying that you have some permanent improvements in relation to twitching etc with Sinemet? I've read that drug-induced Parkinsonism can resolve anywhere between a few days and two years after stopping the drug that caused it. And that it typically remains static, i.e. is does not progress. Although our situation is different I would have thought, in that the drug induced Parkinsonism they talk about is from antidepressants etc, there may be some similarities.

I have not noticed any changes in sense of taste or smell.

No problems in the centre of my back. I have had some spasms in some unusual places though - heart area, temple and even the head (didn't even know that was possible!)

No coordination problems that I have noticed. The only other thing that I can think of that may be relevant is that my fingers have felt a little stiff with some very mild cramping type pains this past week, but that may or may not be related. It's natural to have some body aches and pains from time to time.

I will enquire about the possibility of a PET or DaT scan when I see the neuro later this month. Might reveal something. Although it might not. I've read that some people have PD like symptoms, respond well to medication, but don't actually have PD, and PET/DaT scans can show no abnormalities. I guess our understanding of the brain is still very low.

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Lots of doctors around here use Sinemet for RLS (but more often use Requip). It tends to lose effectiveness after a couple years (so I am told). Sometimes they use Keppra to extend this. Also, there is a drug trial going on to see how Keppra helps dyskinesia. The med that helped my RLS the best was Selegiline - yet another topic.

Dyskinesia is possible with all dopamine increasing meds. It is the highest with levodopa for people with advanced PD - some say 50%. However there are people taking it for decades without problem (and their PD doesn't progress much). In general two things seem important. 1) Early treatment can greatly slow progress of disease. 2) Often they try to use other dopamine agonist before Sinemet and use them with Sinemet to reduce the amount of Sinemet needed. If I use Wellbutrin then I need less Sinemet - but my brain is a strange creature.

Largely my fears of dyskinesia are gone. Its been 3 1/2 years so far. Dosage remains low. And for people with PD, the dyskinesia bothers the caregivers more than the patients (so I've read). I think some movement problems are better and some tremors are slightly more - it is all so subtle you just get used to it all ... and paying too much attention makes one a little OCD. Low doses of this med greatly improve my life so am happy with it (though it galls me to 'need' any med).

I requested a PET scan and emails to this organization in UK (www.viartis.net) said they are excellent for unusual cases. But doctors here thought the problem to be diffuse and thus would not show - it seemed clear that around here they don't know how to use this scan well so it seemed best to forgo a years background radiation, lol. It the end they know the types of meds I do well with so there is no further need for imaging.

There is ONLY ONE WAY to know for sure about Parkinson's disease - autopsy. About 30% of prior diagnosis are incorrect. And many with non-motor problems do not get diagnoses with PD because it is classified as a movement disorder (yet 25% do not have significant movement issues).

Yes Parkinsonism is very different that IPD. It also has the most cognitive problems ... and cognitive problems have little success in treatment. IPD is very predictable on how it will progress (though the rate varies) ... 30% of IPD people have Lewy body disease. The significance here is that PD does NOT cause dementia but Lewy body disease does.

In the end very little is understood about the brain.

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Was thinking how to describe what has improved with movement (am mainly focued other things). One thing that is better with or without the meds is smooth movement of fingers. In particular when opening the hands. For example, while (trying) to play guitar, when releasing a string the finger tends to pop-up irregularly which can mess up timing.

Perhaps the best word to describe this lack of smooth movement is cogwheeling. Instead of smooth motion it 'ratchets'. Again as described earlier, this problem is greatest if there is no weight or load involved.

As for position dependent tremor - it goes away briefly when increasing dosage. It seems to need around 5 pills a day ... which I will NOT do - since 99% doesn't need it, increasing the dose is not justifiable.

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  • 2 weeks later...

Neurontin can cause a high, and talked with some other who use it. I currently take Gabapentin and have for a very long time. It does have withdrawals at higher doses, but manageable. It is very effective and rapid effect of reducing "anxiety to complete an action." such as visiting the message board. It is stressful when I have not been on for some time because of my personal situation, and without gabapentin I would feel overwhelmed to come back. It lowers an anxiety overthinking threshold. That being said, during the days I was very involved with drug use, I knew people trading a single pill of Ecstasy for an 800 mg of Gabapentin. We always tried to get our hands on gabapentin. I believe i could run a controlled study with users of cocaine (very infrequent, but for social reasons) and have it paired with Gabapentin and see most coke users switch.

It is also abused as a recreational drug in prisons at high doses. I do notice that my body is much less affected by cold at higher doses as well.

- David

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