EmIly

Try not to worry, we are all in the same boat as you. You will get better every day is a new day we all have ups and downs and strange side effects from hppd. Your anxiety level is high so when anything happens to you it's magnified. I do this to myself all the time in my mind it's so much worse then it really is. Some people will do more then just one sleep study so keep that in mind if it starts happining more. If your ins. Will cover it.

He has not the only tests have been an eye exam. I thought his eye doc. Might have some good tricks for helping him read that's his biggest complant. Of course the doc. Said I think this is just migrane. I explained this is constant it does not come right before a headache although he does get migranes every now and then. I have not tried anything else yet I don't want to try any meds yet until he is older and can make that choice for himself. I have let him know he is not alone and that it is genetic. I think he always thought he was a little phycic and just could see ghost and strange stuff in the dark. I let him keep lights on at night and his tv for the noise to help him. This adds to his sluggishness in the mornings but I think it's worth his comfort. I truly don't get why his visuals would be worse then mine. Isn't that strange? He's eyes are more dilated then mine as well. That's why I kinda wonder if he's dad is not a carrier to. I know he has OCD. I questioned him about visuals and he said he does not have any visual problems. Anyway thank you for all the support! I feel like you guys are my family and will be he's when he starts looking for answers.

Medical companies listen to dr.'s because there the ones that write the prescriptions and bring in the money. It's almost like we need our own lobbyist. If we had a doc. That would call them that would be great! Maybe we should all get together and hire a Pr firm to represent us. Jk I guess that's kinda what David is doing.

What about rem behavior disorder which is basically dream reenactment. You might want to have a sleep study if your worried. It seems when we have hppd we blame it on everything your anxiety was high already you were tired some times strange things just happen. I'm sure when your anxiety level decreases you will be fine. Get your mind off it go exercise or think of a new hobby anything to stop thinking about it. If you still have problems with dreams and sleep you should see your doc and ask for a sleep study. Don't WORRY about going nuts we all have the same thing you do and we are all still here and this may be totally unrelated to hppd. If you tried a new med. that could be it as well.

I'm not to computer savy but I can contribute financially if that would help David out.

Thank you for the positive thoughts! I hope your right and I will always hope for the best. He is very bright and has an old soul he's able to cut to the core of things like no one ever known. The only other issues besides the perceptual have been anxiety not true panic attacks but very anxious he's not able to sleep in the dark for obvious reasons and at times seems sluggish. That's about it. I don't talk with him about it because I don't want to draw attention to it so I'll only talk with him when he comes to me.

I know I never thought I would pass this on to my child. It's one thing to know you did the drugs and this is the punishment but a complete other for someone who's done nothing. What will his life hold. It's really hard when I can't offer help and I know that it can make life very hellish.

I never had any symptoms before drug use. My child was not so lucky and I don't understand why. I truly wonder if it's because maybe my husband is a carrier as well?

Yes I do!

It's really hard for me to post this privacy is very important to me as I'm sure it is to all of you. I felt after reading this I needed to share it with you. I've already told dr.a about this as well. My child at a very early age around 6 told me in away only a child could express that at night in the dark he sees ants marching all over (visual snow) later years he expressed a concern that he sees colors flashing on his wall (I dont even have this) and images in the dark. He's young never tried drugs or even tasted alcohol and no anti depressants or add meds. This is passed down and I feel I need to share this with you because you need to know that it can be passed down. I have posted before about myself but would have never about my child exept to let you know that your child never has to tuch a drug to get hppd. The hardest part for me is I have no answers for him. Dr.a said I better make sure he never tries a drug. Could you imagine. My husband is very well known in certain areas and has mastered life educationally but I do wonder because he is OCD if together we passed this down. I don't know may never know but there it is anyway. I really hope this helps in some way.

Sounds great. I wonder if you could get the same effect from a mask or if you need to be in the chamber? I've seen one at an alternative doc's office and it looked like a body bag with a plastic window( Sorry but best description) not sure if I could handle it. I'm sure there are better ones out there but that I'm sure means more out of pocket money or getting an ins. Company to cover it. Got to giggle a little at that one.

That's awesome! I will look it up now.

Hmmm it's so crazy that we are this evolved but can't come up with not even a cure but the origin of this hell. The numb brain really mimicked my experience with hppd thought just maybe. Who knows some days I truly live hour by hour then others I have a good day. I always wonder what's the difference between them what have I done differently how can I bring on more of the good.

I do experience something a lot like vertigo and there are many people who say with exercise they feel better. I'm thinking it's because it gets oxygen to the brain. Just an idea.

Recently I had a procedure that required a numbing agent when It was administered within 30min I got something doctors refer to as numb brain. Because the med. Is a vazo constrictor. The symptoms were like my own but acute. I'm just wondering if we are suffering from something like cyrebrel hypoxia in a mild form and if oxygen therapy would help.

Thank you! It does help i do seem to have a problem staying on one course of action. I do understand the risk in hgh but its no more of a risk then the ppi's. cnbc listed prilosec in the top 8 drugs doctors would not take. links to heart attacks. So i've really been working natural stuff and it has gotten a lot better. I had all my labs today for the hgh. I will talk more with him before i start.

There's a doc in Dallas who is implanting the stimulator in the brain. dr.Mckinney i think hes a nuro eye dr. and theres a post from he's patient on another site. I asked him to post here but i think it was when the site was down. he said it cured his hppd and was done to treat this problem. Very invasive it's brain surgery and you have a stimulator left in the brain. If you want to find out more he's a really nice guy i called him and talked for awhile. He posted on i think the mushroom site if you cant find it let me know ill find the exact spot. I think the new treatment should be stem cells.....look it up it's amazing stuff!

Ok i found the meds there are 2 one im ok with trying the other i dont think so.(just because i dont know anything about it) The one i will try has only one pill in it so idk. Will i know right away without taking the other drug? I guess then it will be a hunt for a doc that will give it to me. I'm thinking i should wait till after christmas to try it. hgh... ok it helps build lean muscle mass and im guessing it would strengthen the spinkter just a guess. but if a side effect is a clearing of brain fog that would be great. They are trying it with ms so maybe idk. It all seems like a guessing game but the price is pretty high.

sry yes i do still have meds. from Boston and did think about it. idk i could but when he talked to me about them he made it sound as if it was just an every now and then drug like if i needed it for reading. My reg doc wants me to take a benzo 30 min. before tacking another ppi. It's funny i always thought it was hard to get those kinds of drugs i have dr's trying to shove them down my throat. i keep telling them i have some already at home untouched no need to call more in. ow well what do you do

hey! im so glad the site is back up. I dont take much tylenol at all maybe once a week. I've really been watching my diet and it seems to help but i still have the reflux every day but im hopeful that with a good diet it will pass. I've learned something from all of this i can say no to dr's. If you go to a dr. you will be given a med. thats just the way things work. I went to a natural dr. have a ton of natural treatments now i guess i'll see how that works. It actually was a kind of funny experience i thought at one point my mom was going to run for the door. I kept saying be open minded but at a her age the mind has opened and now is closed. Anyway one thought is i have a friend who has fully recovered from reflux with hgh also they are starting to use this with ms for cognative effects. its really expensive and some side effects. idk im scared to take anything and now im talking about injecting a synthetic human growth hormone. I'm all talk. I'm sorry anyone else has this but im so glad to know im not alone.

Just got off phone with gi doc he got results of my endoscopy and I'm going to need to be on ppi's for life or surgery. I'm so depressed about the thought of trying another one of theses drugs but looks like I don't have a choice.

I went to see dr.A about a year ago with my sister. He was very kind and I picked up 3 diff kinds of meds. Can't say what they were but you probably already know. I picked them up at the mom and pop pharmacy that's by his office and then couldn't get myself to take them I was to scared. What do you do for someone who's unable to even try. So it's not his fault but mine. He didn't know a doc in the Dallas area he new someone in Houston but that's to far for me to see as a reg. Doc. If you know anyone in Dallas that would be amazing. I'm off everything now exept tylenol and backing soda when my throat closes up do to acid. I'm really trying to eat but have lost all apatite and am fearful every time I eat what the result will be. I have a antiy anxiety drug at home but don't know if it will make it better or worse. By the way you made a post somewhere saying you do what you have to. It got me thr my endoscopy. It's the little things. someone else guided me away from a problematic drug so I am already very grateful.

Thank you for the replies it means a ton to me right now. My hppd started when I was 16 drug use.it's gotten a lot better over the years almost gone. I also worried about the day I'm in now when I would have to look into drugs for help.( I have a huge phobia about meds) prilosec caused really bad side effects for me and I feel like I've been droped at ground zero. I've lost 11pds now and can't seem to eat and have been having thoughts of just ending it. I know how bad that sounds it's miles away from where I was just a month ago. I just don't know what to do. I even thought about checking into a physic hospital but they will just give me anti depressants which I heard can make it worse. Which I def can't take right now. I tried Prozac once it brought on dp which made me have a panic attack. Yeah lots of fun this has been. Will this ever end

Thanks for reply. I told you about the procedure I had well it was fine but the prilosec (I think that's what did it) had a funny effect on me I started having panic issues that just will not go away along with acid reflux. I'm thinking about tacking something for it tonight. I looked up side affects of prilosec anxiety is one of the many. I've lost 10pds since this has started and I'm afraid. I can't seem to get this under control.

I'm ready to try to take meds. I need them but can't afford a mental break down where I almost am now. What drugs should I start with. The baby's the least side effects I need something. I'm having a really hard time trying to keep it together. Any help would be great. my symptoms are high anxiety right now visual snow, after images, floaters, some strange movement, brain fogg, some cognitive issues, and irritability and I think depression. I've had hppd for years it just starred to get this bad. I use no drugs or alcohol. Any help would be great! I've been to Boston to see dr.A but was to scared to try anything. I'm past that now I think. Thanks