pennyarcade

FFS the tinitus is so loud now its spread to both ears its like someone screaming, this had better go away I can't cope with this.

Feeling lonely with this problem I can relate but you are among friends here.... My story is summed up at the beginning of this post. Hopefully things will get better again for you guys.

You are braver than me ...Would you not be worried about it coming back?

Just take it slowly man as you are doing. Have you thought about assisting your WD with Neurontin? It really helped for me especially with sleeping.

Yeah your work is really spectacular, I'm glad Keppra is working out for you man

Thats cool man, did you scan it or use a graphics tablet?

Glad the websites still going well mate I will get of my arse and start some projects soon. Keep up the good work!

Here is my depressing music I write. All the lyrics are about HPPD though not in an obvious way. I used to gig and stuff till I got to ill looks like we are getting back together possibly... www.myspace.com/pennyarcadeband

Sorry I just read your other post, I misunderstood on the 40 year thing.

It appeared 40 years after taking LSD? How long have you actually had HPPD now? Did you have any mental problems prior to your HPPD symptoms? Sorry with all the questions ive read about delayed occurrences but 40 years it would seem hard to see that it was even connected to your drug use but idk... How did you get diagnosed with HPPD or even learn about it? I went years not knowing wtf was going on it was a big relief finding this community. I'm an IT technician/programmer so ive kind of just used the same approach that I would for fixing Hardware or software issues... admittedly I would have just purchased a new computer by now but that obviosly isn't an option. And its less than ideal having to self medicate cos I to have crazy periods hopefully thats in the past now. It hasn't been easy getting to where I am at the moment lots of painful dead ends. One of my doctors once recommended clonidine, I asked about it on here and no one seemed to have any luck with it... what do you find it does for you?

I forgot to say im getting very waxy ears I think the popping noise is ear wax dislodging.

I used to get the jaw clenching for a couple of years or so after I took LSD kinda like when people have taken E, I haven't had it for a long time now. I will keep updating would be sweet if you could do the same if you notice any changes. Things have improved greatly the past couple of days, colour vibrancy has returned in a big way so much so that I thought the settings had been changed on my PC monitor. I have what I can only describe as very stable static its not changing throughout the day or moment to moment the intensity is staying low and im only getting mild after images but only if I look away from a strong light emitting source like a light bulb or out the window, no noticable after images from looking at my PC monitor I used to get it bad from that. The white layer on my tongue is clearing up considerably, but I am still suffering with really loud tinnitus its making it hard to sleep at the moment... I took some inositol last night cos that normally helps me sleep and it did the job well. Quite bizarrely my Hair texture is changing I've always had (for as long as I can remember) really dry curly frizzy hair but it seems to be holding in a lot more moisture and the curl is easing I first noticed it on my pubes while taking a piss it was quite a shock. I'm having some very Keppra like dreams... dreams of people ive lost touch with and things I used todo before having HPPD im having a strong urge to contact these people its almost a very sad/regret feeling. I smelt something in the house and it gave me a really nostalgic feeling I can't explain it I haven't felt like that since my teens when I was on holiday in Portugal thats what it reminded me off... very hard to convey but it put a big smile on my face. Im still getting a painful sticky discharge from my left eye. I think I still have a long way to go but I am very excited to see what else changes.

The withdrawals suck I won't lie but if youve tolerated HPPD for a period of time prior to going on benzos you will be able to handle it, its more of the same really. I think people with HPPD can shrug off stuff that would freak the hell out of other people. It took me a while to get accustomed to the increased after images etc , it was no worse than before once it stabilised, I think that and the anxiety was the hardest part it definitely takes time to sink back into life without benzos. Best of luck

UK

Quick update... sedated feeling has left and I have now got lots of energy. My left ear is popping like crazy kinda like pressure changes or something the tinnitus is real loud in that ear to. I've got a very uncomfortable cold feeling in the left side of my head near the temple feels like ive got a block of ice in there, my hands and feet are freezing also... lame.

The same as Larry... I can understand someone who has had HPPD for a long time doing them, you get a feel for what to expect as you test the waters I don't reccomend it but I guess its the "Ive got nothing to lose" mentality. but (@brokensaint) if you recovered why the hell would you be out with your mates doing more? Do you feel all this was worth the fun you had? Im not having a go im just interested.

Hi Jay long time... good to see some familiar faces hows it going? are you still living in Portugal?

I'm trying to remember were I saw the story it was literally heart breaking, she was cared for by her sister she coudn't tolerate hardly and foods and had sensitivity to light so she stayed in bed in the dark 24/7 I believe social services took her away and she died not long after. After reaching the max dose of goldenseal ive reintroduced Threelac to see if I can tolerate it and so far so strange... My static has gone crazy everything is kind of blury, but im kind of enjoying it now ive got massive brainfog like ive taken a heavy sedative but im not experiencing pain or disturbing thoughts im just sat back in my chair looking out over the harbour watching the ships come and go. I don't think I could move from this chair if I wanted to I feel couchlocked.

Thanks Larry heres hoping. As far as testing, i'm really not sure about naturalistic approaches i find them suspect but alot of the criticism ive read comes from the anti candida camp. If you can find a regular doctor who is aware of candida or an open minded one they can test you for antibodies like the method used in the study i posted. Candida is accepted by the medical community but they believe it is only a issue for immunocompromised patients and they generally don't believe the wide range of symptoms that can be caused. Some of the things i noticed was vertical ridges on my nails and a white coated tongue which i've had as long as I remember. I think the cheapest way would be to read up on the symptoms and if any of it rings true get a box of threelac or something similar and try it for a week its really powerful and if you have candida you will get a reaction the problem with this is you may just think its affecting your HPPD which could possibly be the case. For me it was kind of like the SSRI dilemma... this is unbearable but if I continue will I see benefit or will I be setting back my progress even possibly making my condition worse. I decided to stop and take it slow in a way threelac was my test. Anything healthy is a good approach, its best to be strict at the start even if it just to give you an idea of how your body feels without excess sugar and then when you gradually reintroduce things you can see what foods give you an adverse reaction. You could try posting on curezone there are lymes sufferers on there dealing with candida you may see some stories that hit home. There are some new age hippies on there with ridiculous theories though... haha no im not a hippy

Yes if you ever go on curezone there are some horrendous acounts but it is rare for an infection to get this bad most people complain about bloating I ended up hallucinating in hospital barely able to walk with one working hand, it could be worse I've read about someone trying to sue the NHS because they forced someone into mental care who had a Candida infection and that person died the family requested an autopsy and analysis of the spine showed insane candida she was being eaten alive. Im guessing most people would of seeked help way before I did, I thought it was all HPPD related.

One more thing, you may get external skin problems or eye problems resembling conjunctivitus don't use any steroid creams or antibiotics (obviously). Water down the gse and rub it into the affected areas (not the eyes) it can also be added to shampoo for your scalp. Im not sure what to do with the eyes I just grin and bare it it seems to clear up quite quickly before it gets bad again. Best of luck

Yes and the effects will be intensified when you start the antifungals, it wont be a matter of following the diet, you will be a slave to it, if you stray without stopping the antifungals and you react like me you will be walking around like a zombie if you can walk at all, your body will tell you if you have eaten something you shouldn't have I literally sweat it out and get crazy brainfog/ocd/disturbing thoughts and joint pains. A word of advice I screwed the enamel on my teeth by going to hard at this at the start, candida die off makes things very acidic my piss was fizzing like soda If you have acidity problems I suggest you scale back... also alkaline vegetables like cucumber are your friend !

I wasn't with it when I wrote any of that... Jesus that was horrible I woke up this morning in a puddle sweat and gungy sticky eyes on the plus side I'm clear headed now and things seem to be clearing up again my vision is vibrant but my static is pretty strange im getting like an intermittant flash... I thought it might be the light bulb but its following me round the house . I almost don't want to go back and read what I wrote before its like a different person wrote that very similar to what I experienced at times on Keppra. Larry I think I was just freaking out... What I wrote doesn't even concern me at all now I don't care what illness I have or had I was just frustrated because I wanted others to benefit from this cos then this all wouldn't have been for nothing. What I was getting at was how I was doing HPPD by the book and having very similar experiences and reactions to other posters but as you say it doesn't mean it has the same cause. And what you said about the coloured dots, I had a very similar experience as child to. It makes you wonder if kids really are seeing shit when they want the lights left on at night.

Sorry mate I increased some herbs last night and my die off symptoms were the pits this morning I get all paranoid and irritable. I didn't mean what I said about you thinking what ever I had no way of knowing. The problem I have is if I have a different illness, why did I react so similarly to others on medication etc across the board. I had the same symptoms as others to a t. I even used the advice of others to get through day to day. I had light VS growing up but so did others on the old forum mine went away and came back with drug use it wasn't the same as the light static I saw growing up it was a hallucinogenic hell hole with after images, fractals, tinnitus, balance issues, light sensitivity, head pressure.. I think you could name a HPPD symptom and I would have experienced it I had it bad... I say had but have is probably more apt I'm having a really bad flare up today I think I need to slow things down a bit. Oh Hell yeahs Merkans the man!

Sorry i missed this. No I really do agree with you, ive got my message out people can try it if they see a correlation with other symptoms you obviously do not and I suspect you have doubts that its the reason im getting better at all. but I get it from everyone. I don't expect people to say omg how did I not see this... its bizarre even still in my eyes. And the whole clonazepam mask/cure thing is not worth arguing about, im sorry if I dodged out of that.