LarryC

To 1998's point, blood pressue meds should only be taken if you have uncontrolled high blood pressure.

Just an experience, my blood pressure elevated very much at the same time I relapsed into hppd symptoms. I take blood pressure medications and there is no improvement to my hppd symptoms.

Klonopin CAN actually reduce symptoms, lessen visuals. There is scientific basis for its effect on visual symptom reduction. As I said it can reduce them. It does not help all people. It not knowm why. Note that with all other medications for this malady, for some they work (help reduce certain symptoms) and for some they don't.

This should though not be any surprise as this is the case for more common ailments, where a med works for one person but not anothet.

My hppd will not bother me so much somedays and other days beats me down. Probably sways w/ my depression and anxiety.

Anybody else out there having a hard time getting off a long term benzo habit I'm w/u. It's hell

Unfortunately for me I developed an addiction to klonozipan again. I have to take it for a while and then try to withdraw. It is hell just having a tolerance and it wearing off. Ny sleep is terrible and I am alway waking up with disturbing dreams. Doesn't matter what the dream is. They all become disturbing when the benzo is wearing off.

Agreed, although its not easy. Its a catch 22. People will not starting posting until there is some activity. But, there won't be any activity until people start posting.

People who used to post a lot, like myself Jay, Mandrake, and Merkan, to name a few, haven't been nearly as active and for obvious reasons. We all have lives to live but it was nice to jump on the forums during a bad day or just to join the conversations. Now it's just extra work to get the ball rolling again.

-Dukkha

Left me out . BTW Jay found out about the new site from me. He posted once and then not hear from him since.

The membership has gone down considerably. When I was monitoring the board there were many people who came and went and alot of people who were on for a long time, went away for a while and then came back again. You Dukkha for example.

Also much content, certainly not all quality, but enough quality postings info and sharing to be interesting and at times informative.

HPPD does alleviate to great extents and also completely in many cases. As I mentioned before the people who experienced this have no rrason to be here. The clinical studies show this.

One doctor who has much clinical experience with people with hppd said to me that hppd is very complex and there are periods of alleviation and recurrance. This has happened to me.

I suggest 2) and 3). Best to see if there is something that the med community can detect.

What happened to the old board?? That place was like a journal to me. I wrote so much stuff that i used for reference. Can anyone tell me why it got deleted and if anyone has the database.

Gone. Only David knows what happened and why. All content is gone. Membership and posts to this new board is very low. I miss the old board and content too. Don't miss the nutty members and theories though.

well my head use to feel pressure like that when it first began that subsided with time for me. Maybe the klonopin helped it

1) How long have you been on klonopin and at what dose. Long term use of these meds can cause havoc in your nervous system and may cause or contribute to the vertigo

2) There may be some issue with your inner ear. Problems there cause vertigo. See a ENT specialist and describe your problem.

3) There may be a blood diffusion issue in the brain. After 2) if no answer from him/her, see a neurologist and discuss the symptoms and mention the blood flow to the brain possibility if he/she does not. You may need to have a neurospect scan.

I thought by this time many of the members who were on the old long standing site would find that the site is back. Albeit without all the content. Though not many have joined or even visited. Very few posts for the time this board has been activated.

When will names of the speakers and the agenda be available?

Also remember that people get better just with the passage of time. The brain can eventually reregulate. It has happened to lots of people. They are not here. They have no reason to be.

Risperidal can worsen the visual and all other hppd effects. The reason is that it attaches to the 5ht2a receptor which can cause after images. Not everyone who takes it will experience that but it is a risk.

Try a search for risperdal (whatever the correct spelling is) and after images. There is a paper that comes up that explains the reason that some people (none hppd'rs) experience after images on this med.

Dr abraham is trialing a drug that has shown promise in dealing with hppd does anyone know what it is apparently its an offlabel drug used for something else .

cheers robbie

Never heard about this. Maybe David would know or can find out.

Another update for everyone: My symptoms have gotten a little worse. Visual snow, increased afterimages and floaters are now pretty noticeable. I still don't have any other hallucinative symptoms such as patterns or changing colors, though. I think I'm going to wait several more months, but I'm definitely thinking of treatment through medication. If that is the case, how should I proceed? I've read a lot that states doctors aren't aware of this issue and might be dismissive of my symptoms. I've also had some 'dry eye' symptoms lately, but it could be unrelated.

I've kept drug free since September 25th and haven't even had any alcohol since then (not really an outgoing person in the first place so it wasn't a problem). I've also stopped drinking caffeine including soft drinks like pepsi (is this even nessassary?).

Thanks, everyone.

Sorry to here it has got worse but that may be temporary. Caffeine does negatively affect some people. I gave it up years ago but once in a while have some and it affects me badly.

The first treatment is usually klonopin and helps some to an extent. You can correspond with Dr. Abraham, who researchd hppd and coined the phrase and brought it to the attention of the medical community and has written several papers on it. Go to his website www.drabraham.com

Keep positive and update your condition.

Take care of yourself in all ways.

Larry

Hi Mandrake,

Yes we read alot about the good the bad and the horrible of antidepressants. One thing that is certain is that many people without hppd have problems with antidepressants. This is mainly an initial reaction and the type of antidepressant taken as with all meds for different people.

I have had to go through the initial problems with Lexapro but those went away after several weeks. With any of the many choices need to work with your doc to see if it is a passing problem or the wrong antidepressant. I don't notice any visual problem increase with ssri's but with snri's there were issues.

I take small doses of neurontin which ups my mood. I no longer take Lexapro because even with insurance the out of pocket cost is over $100/month because this insurance company took it off their list of meds they pay the major cost.

Take care, good to see you here.

Larry

Hey everyone. I was wondering if there was any correlation between minoxidil use and trouble concentrating (brain fog) and possibly anxiety? Yes, I'm going bald and it sucks.

Here's my situation. I started using Minoxidil when I was 19.5 because I was noticing shedding. I had no symptoms, and its questionable whether its ever really done anything for me. I continue to use it just for the sake of it, hoping that its stopping shedding for than not using it would.

Just before I turned 20, I got hppd from a bad shrooms trip. I have seen people and for the most part been able to deal with it. The last year of my life has been relatively normal, and the whole time, I have been using minox.

The past couple months, I wake up, take a shower, apply minox and for the next couple hours, I feel very brain foggish, which makes me anxious. I never even thought to associate this to minox cause I've never had problems before. The past two days, I didn't use it and felt pretty great. This morning, used it again (5% minox from walgreens) and bam, the same thing happened again. I just felt out of it for a solid two hours.

Now I could just be anxious/smoking too much weed/not exercising enough - all things that make hppd worse. At the same time, it seems like the correlation between the two events is to coincidental to overlook.

If there are any other bald hppd'ers, let me know if you had any similar experience

EDIT: I'm now 21.5

The only possibility I see is that minox may temporarily lower blood pressure.

Hey Joe,

Thanks for taking the time to write this and keep everyone updated. My visual symptoms are by far the most aggravating aspect of this disease and it is nice to have a little hope that something may help.

I do not know what your med history or drug use is or was. Some people find visual symptom reduction with Klonopin and Keppra.

"Low Dose Naltrexone" is made by a compounding pharmacy from regular Naltrexone. You can read about it here:

http://www.lowdosenaltrexone.org/

Naltrexone comes in 50mg pills. My doctor told me to take one every other day, but he thought they were capsules. I took 50mg the first night but was somewhat frightened by it (I've had a lot of bad medicine reactions, so it might have been just that anxiety). I asked if I could go down to 25mg per night for a week, then I'll go to 50mg daily.

The first 50mg dose had me back on the feet the next day! (From fibromyalgia pain so bad that I could barely manage to walk) At 25mg, the pain is coming back in late afternoon.

It's done nothing for the phantom eye pain and hallucination.

Hope this helps!

Polly

I also am looking to use it for fibromyalgia pain. Thanks. Went to my doctor yesterday and needs me to adust to some other meds I am taking for other reasons first and show improvement. I see him in a month and then we will discuss again the use and prescribing it for m. I asked and he said there are no major contraindications foe this med,

What s considered a low dose? What dose has been effective for pain for those who have taken it for fibromyalgia and other pain?

Hope this isn't depressing but it is probably important.

Turn back the clock, when I first got HPPD it was coupled with fibromylagia and chronic pain/fatigue. It was diagnosed as I had the pressure points and soreness in my muscles. I guess one of the lay theories behind fibromylagia is that your pain/pleasure sensors get turned around after say a traumatic event(bad trips?). I was lethargic most of the time and couldn't even get out of bed most days. I was literally like that for several years, just horrible really along with HPPD, just willed myself to survive I guess, hard to think about. It's probably worth mentioning that I was in a car accident where I got whiplash while on LSD but I was already dealing with the fibromylagia, chronic fatique, and HPPD prior to that for almost a year, it just made it worse and that was about when I finally stopped the mad track that I had gotten myself onto as a misguided confused teen which I am not now. The fibromylagia dissipated over the years but I would still tire out relatively quick. I still had chronic pain though and bouts of fatigue. We've got a temperpedic bed at my house now and I couldn't even sleep in it without severe lower back pain by morning which didn't make any sense to my girlfriend because she slept like a baby and never had any pain, along with every other person I know that has one. A lot of nights I would end up moving to the couch because it was easier on me. Before I started taking naltrexone I had a script for Gabitril, the GABA reuptake inhibitor. I had pretty high hopes for it because of the supposive GABA connection with HPPD. I didn't last on it long as the side effects were horrible, you should read the profile, it can induce temporary mental retardation if titrated too quickly or just being on a high dose among other things, I'm being serious, look it up, plus it gives you this uncool drunk feeling that you can't shake, amnesia too. It can lower you seizure threshold and just all sorts of crap, it was pretty bad news for me. The one thing I did notice on it if you can call it a positive was that it numbed my nerves meaning like literally all my nerves through my body and I could sleep on the temperpedic without pain just due to not being able to feel almost anything, I couldn't even feel my jaw bite down and what kind of life is that? But the other side effects and just the games it started playing with my HPPD mind which began to snowball were way too much to call it a benefit. I guess it numbed my nerves in the same way Lyrica or something would, It was different but just I don't know anything else to compare it to.

That was another reason that when I started taking naltrexone I didn't have much hope for it. Oh boy here we go again with another one I thought thinking of the utter failure Gabitril had just been along with others. But naltrexone hasn't been that way at all. My energy has improved along with brainfog, and just all together being more together. I can now sleep in the temperpedic bed without my lower back killing me by the morning and I just don't know what else I can say about my experience with naltrexone, thank you god! Like I've said before my DP/DR is practically gone as of now, yeah I've still got some visual symptoms, a little less, but the tiredness, off and on pain, and DP/DR are almost non existent. Today I lifted weights and road a bicycle around the neighborhood and it felt good. I guess those pain/pleasure sensors getting crossed up could account for the pain I was experiencing say when I was trying to sleep on the temperpedic as it always seemed to originate from the back left of my head. One of the papers I posted pointed that some theory points to DP/DR originating from or being a factor of disregulation of the opiod system. I guess I'm playing lay doctor but it would kind of make sense that chronic pain, fibromylagia could get lumped in to that as well. In my experience I don't doubt that fibromylagia, chronic pain/fatigue patients are finding relief with naltrexone because you could probably lump me in that group as well, even the doctor that prescribed it to me said they're find all kinds of far reaching applications for naltrexone and the amount of positive feedback from the internet is rather remarkable.

I can just talk from my experience, I didn't write shit about the great successes I had with Gabitril because there was nothing for me to say. Everything I've been writing is real, why would I come on here and bullshit all of you people. I'm hoping that by writing this out that hopefully others will not have to go through the long draining sometimes hopeless feeling of trial and error I went through. I want to see progress for everybody and a better way forward for members of this community. I hope this post doesn't get misconstrued or is too depressing, I've had to walk some pretty rough shoes dealing with this. Or for someone to say aha! that's why it would work for you and why it wouldn't for me, man, at least give it a shot.

For robbie, when I started naltrexone, it was only 12.5 mg for the first couple of days, that was enough to knock me out for a couple of hours until I came back to and noticed a slight imporvement which steadily increased over time. Even the low dose naltrexone forums say there's an adjustment period so chin up man, stick with it for awhile please before you discredit it. Oh, and it is recommended to be taken at night for the low dose therapy if you hadn't stumbled across that already too. Good luck with it, I'm rooting for you.

Robbie, are then fatigue, brainfog your main ailments, if not, what is?

I noticed too that I get a little more benefit from taking a good multivitamin than prior.

Good luck guys

Joe

Hi Joe,

Thanks for this post and your personal message.

Could you list some links that talk about Naltrexone and fibro and chronic fatigue? I would like to print out and take to my doctor. Thanks, Larry

Hi im dropping down to 12.5 mgs and sitting there for a few weeks - been pretty tired with initial onset -feeling more awake today more energy which is the worst symptom of my hppd - no noticable change in visuals yet -not that its a concern either way - if anybodys interested google low dose naltrexone forums( ldn forums ) many many stories of huge succses within the ms fybromilgia and lupus community 4.5mgs seems to be the recommended dose within these ailments.

Reading between the lines of the above ailments their does seem to be a thread connected with hppd atleast the physical symptoms ( fatique brainfog muscle aches) etc so some room for optimisim but only a glimmer at the moment -will keep you updated .

cheers robbie

Robbie,

Thanks for the info about the med and fibro. I have fibromyalgia and nothing helps. Can't see me asking my doc for another med right now though.

I never had DP/DR so not an interest for the HPPD for me. But good to hear youare having good results.

Wish there were more of the long term members on this site. Many have DP/DR and might benefit from this. They would certainly be glad to hear about a med that helps with that symptom which seems to be the most difficult to deal with for them who have posted.

Was your absence from work due to your HPPD? (If you don't mind me asking)

I've been okay, just taking it as it comes I guess, I haven't been able to work or even drive for the past year so I guess I can say I've ben doing the same thing for the past year, just trying to get my life back on track, staying optimistic at least.

Have an appointment in a month with one of the higher up neurologists here in Australia, so looking foward that!

And yeah hopefully the forums start getting back on track again soon!

Partially due to direct symptoms and seemingly related symptoms. Also going back to work to be engaged and productive, after 1 1/2 years.

And because I can not live without an income.

Seeing as the forum has been down for a while might be nice to see how everyone has been and what everyone has been upto?

Hey Balance, it has been a while. I see that many people do not know the site is up again. There was no update on the site that announced the reconstruction as was said. It may be difficult to get the word out.

I am doing about the same. Start working Monday again after a long absence out of work.

How you doing?