EmIly

I'm so sorry about your mom. My loved one who has used no drugs but has hppd also suffers from migraines and I do as well. Are you female or male? It seems my migraines are hormonal. Seems like there's a link to migraines.

You might be getting dehydrated it happens a lot on a low carb diet which will make your skin look dry and aged. Also don't forget fruit I don't know how hard core you are on low carb but you need your antioxidants. I'm guessing your male by the name you could also check your testosterone levels when it drops your muscle mass will as well you might could use some extra you can get a rub on cream or injections. There is also growth hormone if you want to go to that extent you will have to get alot of blood work and have your levels checked first to see if you could use a boost you will also need prostate checks if you we're to develop pros.cancer it would grow rapidly due to the growth hormone. Growth hormone is also very pricey you have to inject yourself 6days a week. Pill form is worthless. Not sure how this would effect your hppd.

I haven't tried any but I too have wondered if somehow this is connected to migraine considering most of us have them.

You should have your thyroid tested just incase. It might have nothing to do with hppd at all or the meds. I think if it was tolerance to your med. your anxiety would shoot up it would be like you we're taking nothing and needed more.

I think just being acknowledged as a group would be great individually we fall kinda thing but as a group they would see us. I think if its a huge practice like a mayo clinic then we are playing with the big boys but we did it in a way that they can not deny us. Each of us would have to call make an appointment and make sure we booked the day out. I just think if they saw the numbers it might make it more real for them. It would be great if we could have 100 of us. I like your idea mg as well and I think the government should fund it considering they created lsd. We would have to find a lawyer for that one but even if we lost which I'm sure we would it would get publicity. Maybe the documentary being tossed around could be over hppders trying to sue the government for creating a drug that changed our lives and our children's lives forever. At the least I think we need to form a group and meet once a year somewhere. Find what's easiest for people to get to. If we have Europeans coming it would probably be New York but that's kinda pricey. The documentary could also just start with a group meeting then go into backstory of some of the individuals. Whatever we do will cost money so if we start planning something now for say a year away that would give everyone time to save. If a documentary could be done its up to us to help raise money for it. We could try to apply for grants. Not sure how that works but maybe pitch the idea to educational programs or stop drug abuse campaigns. Idk just ideas.

Wow! The detox drug is CRAZY I felt so bad for that guy trying to detox he so badly wants to get better he would go thr that.

What if we all picked a neurologist in an erea where we could all get to one that thrived on research and helping others and we meet there. We could book him out in say 4 months take his entire day we all show up at 8am let him know we have his day and just hear us out. We could pick one embasidor to do the talking so we don't bog him down with each little pain. How could he look at us and say its not real or its so rare that its not worth the research. I know it will not be cheap but if you start saving now get a flight in and out if you need to.i think we have to do something to get attention. Maybe mayo clinic or Cleveland clinic does alot of research. Someone has already done a lot of research on finding doc's with interest. What's come of that? Is there one we could choose. Just an idea.

You defiantly need to be in a field where your creativity can shine.

415.... Does she still have problems or did it go away as she aged? Did she have any other problems like dp/dr or anxiety? I'm sure her experience helped you if she was open with you about it. Just knowing you we're not alone had to be a comfort. I wonder if for these none drug users there's an onset like a vaccine or an antibiotic they had as a child. Could you imagine if she had ever used a drug how bad her hppd would be.

Boogres..... What was your onset. Forgive me if you've said it before on another post I forget there are so many.

Wow yeah that sounds like it is a sleep issue almost like night terrors. My friend does sleep studies he talks about the strange things naturaly and not natural that happen all the time. He has some spooky stories.

Sammy... How old we're you when it started? Dylan..... I love your post it made me smile. Everyone should be so lucky as to have a friend like you.

Do you guys think if a parent does acid or some type of a heavy drug that they could somehow pass that to the child. Dr.A felt like you had to use LSD or something like that at some point in your life to develop hppd. Could myslingerbult's parents have done this and pass it done and when he smoked pot it set it off? I'm just trying to understand these people who have never touched a drug or smoked pot once how they get it.

Was that your hppd or was it a sleep apnea problem?

That's how mine started as well. I had done acid before just a tiny bit but no bad effects. I smoked a joint had a panic attack it happened one more time then the last time I smoked a joint it felt like I was way to high. It felt like I crossed a line that I would never be able to come back over. It stayed with me panic 24/7 for maybe a year before I started to learn how to calm myself and control them somewhat. But I also got dr,tinnitus,visuals and the panic. Dr.A said that it was the fact that I had done acid In the past so it was still there in my system. Idk but I did feel like it was the pot that did it to me.

415..... Did your mother ever use drugs or did she just always have it and what was your onset? If to personal you don't have to answer.

Yeah I know. Best of luck let us know how it goes. It might still be worth checking into the place in London just to see if they work with hppd.

Myrslingerbult.... How long have you had hppd. When was the first time you remember seeing faces? How long does it last? Does it happen over and over? I see visual snow when I close my eyes and sometimes I feel like my brain runs thr faces but it's more in my mind not something I see if that makes since. Does sleeping with a light help? Sry so many questions.

I do have hppd but not nearly as bad as a family member who by the way has never touched a drug. Sad I know. This person sees the images and flashes of color and visual snow not sure about the pattern. When the family member brought up seeing a face when playing a sport the other day it spurred my question to you guys. I don't want to bring more attention to something that can not be cured or that ignoring we all agree is what helps us best but I am scared of the prognoses for this person. I don't feel like bringing in a bunch of docs is the right choice if they don't even know what it is and this person becomes a lab rat. Which I've seen all to often.

I don't see the images but have lots of other visual issues. I wanted some advise on how to help someone who does see these images. I can't imagine how scary it must be just the visual snow, trails, and after images suck enough. I imagine in our lifetime we will have nothing more then hypotheses on what all is going on in our brains. But what we do have is a desire to get better and help one another achieve success in there own lives. We very better or worse are our hppd family.

Yeah I understand completely I felt awful when I was going thr it my anxiety maxed out it was crazy. People don't understand they say its acid reflux get over it but your digestive system and the ability to eat is everything. I was like you for awhile it felt like I was slowly being choked I had what they call lpr where it effects your vocal cords causing a chocking feeling and loss of voice I thought I was dying I also had a hard time drinking even water at times. When I had my scope they left a 24 hour ph test that should I was having pretty much constant reflux. I just had to wait it out which for people with hppd what's new about waiting. i slowly started getting better i would have a good half day then a good day then a few good days now I may have a good two weeks before any issues show up.I'm defiantly better. If it helps my friend said his wrap saved him and only had that one problem which he said was not that bad and due to eating hard food to soon. I think the tiff is not as major of a surgery but results are not as good. My gi said that with either you might have to do it again because they loosen up. I think as long as you have a great dr. you will be fine. Make sure to ask how many of the procedures they have performed a year. Be picky if you can dr. Shop that will be key to the success of your surgery. Also ask about the anesthesiologist pick the one you want I'd go for whoever is the head of the practice. If you do these two things I wouldn't worry about the other you will be on a liquid diet for I think 6 weeks so it will be easy for food to digest properly. I can ask my friend any questions if you have more concerns. Any idea when you will have it or are you on a waiting list? After the surgery I herd there is a great place in England where they are working on dp/dr they have a whole clinic dedicated to it. Have you herd about it? I don't know if you have these issues with the hppd but if you do might be worth checking out. I'm sure they have some hppders.

I'm half German my grandparents moved here before my father was born to a German community in Indiana.

Everyone is so right you just need to except that drugs are out of the picture for you. If your having a hard time giving them up or seem to obsess over them then I would check out aa programs to help you on your new journey. I love meditation it helps to calm the mind and thoughts that can over power you. Also on your dr. Visits I can tell you an ophthalmologist isn't going to be any help he tell you migraine for sure. He will not prescribe anything for you that's not eye related. If you go to a Nero ophthalmologist you will have more luck. But you will end up just needing to go to a neurologist if your looking for something strong. But I agree with Jay wait it out see where you land first then make a choice. If you are lucky enough that this goes away completely which it does for some please don't think it's gone now I can start taking drugs again trust me it will only end bad. Hppd will always be a part of you now and will present itself at the first opportunity you give it. Good luck stay positive and try meditation I think you will find it helpful.

I think we will also see more cases that are related to just genetics as we pass it down to our kids and so on. It might be a cure for drug abuse in our world in 200yrs.

Yeah I was really sick with it for a year I lost 20pds and gave up teaching spin class. The test showed no hernia for me but it was constant as well. I lost my voice for awhile and got so dizzy from not eating. I was thinking about having the procedure to. You know there are 2 diff procedure the one where they wrap part of your stomach around to tighten or a tiff where they just go in and tag it down. Which one are you thinking about? My friend had the stomach wrap said it saved him. I think the tiff is suppose to be good for hernia's. my friend has only had one problem with his and that was one time food just sat at the opining would not go down he went to the hospital and they removed it. He was not chocking he could just feel it sitting there. I got so depressed when I was going thr it. I think it was a combo of not eating not being able to exercise and not being able to take any meds. Ppi's are pretty bad they have neurological side effects and for some reason I got them bad. I thought it might be because my hppd but if you have had none it's prob. Just me. There are some really good medical chat boards that you can get a lot of good info from. I wouldn't skip to many meals you could get really sick. I know it's a hernia so it's diff then trying to just keep your ph in check but I would still get a blender and go vegan for awhile there are charts on what foods are acidic and which ones are alkaline and if you blend all your food it's less work for your digestive system. I would follow the alkaline to a t. Also probiotics and ginger chews helped me a lot. Whatever you do stay as positive as you can. This will pass and you will be fine. You might have to go thr a little hell first but you will make it. It's life and having hppd and going the anything else sucks. Check out the sites where people have had the surgery it will help you get ready. I don't think it's as bad as what your going thr now. I wish you the best of luck and if I can help in anyway just let me know.