ludwig80

First off, if you ever need to talk to anyone, I'm here, same with many others on the board. I can relate in a lot of ways to how you feel from time to time. On top of HPPD, I have other health issues that seem so far to be very persistent and non-diagnosable. I find myself at times also depressed about how much suffering i've endured and how it has changed my life and social surroundings. I find it unfortunate that a few a poor choices has effected me so much, and i'm annoyed that I've allowed it to effect my life so much. The constant flux of my cognitive ability, vision, and sense of self has left me confused and shaken up when I think about reality. I don't know what to believe anymore because I want the world to make sense, but it doesn't. I believe in karma, but I see bad things happen to good people, and good things to not so great folks. I have a very skewed sense of self and the world around me. I find myself thinking a lot like the song, "isn't it ironic" by A. Morissette. In the sense, that when good things happen to me I'm afraid that something bad will happen soon after to balance things. For instance, I was living in Ca for a summer and found a twenty dollar bill in the stairwell, I could have certainly used it since I was hurting financially, but I didn't pick it up. Didn't want to deal with something bad happening later because of it.Man, I know it's such a shitty way to view the world, and I know it's wrong, but I think i'm just looking for a way to make the world make sense. I watch a person right behind me pick it up and walk off, they saw me in front of them and could of asked if perhaps I dropped it, but they acted like nothing and walked off. So I know this isn't how most people think, If something good is to happen to me, i want it to be hppd gone. I have these feelings you describe though occasionally, sometimes for a while, sometimes they're short lived. Either way it's a very alarming feeling, essentially I've become a very malcontent person with little energy to combat it. But to be honest, I think alot of it is the an intensified by candida issues, because I find that sometimes I have a much more lighthearted attitude as well. I think subsequently, the fact that you're feeling better visually is another reason, like when a business owner sells his successful business and is kind of lost for a while or postpartum depression after giving birth, i think it just causes you to look back on how much work and/or suffering you went through and how it may have left you stronger but slightly lost and confused at the same time. Although, I pretty quickly recognize that there are people out there suffering much worse than I, and regardless of my situation, I am fortunate in many ways. I think it's important to remember this. I've been wondering for a long time, how long I could possibly have had a candida problem. I was a sick alot in my childhood, years 1-4 I was in and out of the hospital all the time from what I hear and took tons of antibiotics. Perhaps I've grown up with the problem and getting rid of it will be a quite a shock for the body. Maybe similar for you. Sorry, if this post seems scattered brained, I feel bit cloudy at the moment.

Hey hope1, Sorry to hear about your current issue, I know it's tough. My last relationship failed after about 4 years (I know your married and prob for much longer, but to some degree I understand) After 4 years I was devastated when she left me, especially since she was my leverage against hppd. I didnt think I could handle my health issues and life by my self, I'd spend a fifth of my life with this person by my side. But, I did. Because? You have too- time is the only thing that helps here, much like getting used to hppd. But don't ever doubt how strong the humas spirit can be. You might feel you're losing a part of yourself, but understand these feelings are temporary. I Forced my self to take a moment and focus on who I was before I was with her, rediscover all my ambitions that I had set aside to make things work. At some point in the last year I realized I was now free to pursue anything in life I wanted. I completely absorbed my self in music. Every second I had I tried to distract myself. Search long and hold for whatever I you used to want and go after it. Who knows, things may work out and this is just a rough patch. But don't doubt yourself for a second if you're stron enough to deal with hppd, you can get through most anything

Very interesting, seems keppra has definetly been helpful for some. I'm still really curious if in having Some kind of Simple seizure or not. So far visually I haven't noticed much difference- I want to say that some of my double vision/ghosting vision is better and also maybe the edges of things dont randomly shake as much. Cognitively I feel a bi slowed down but, my mind feels quietter with less constant chatter and internalization, I like that. I met back with thr NORA doctor, she didnt really have to much to say other than she wanted to ask some colleagues from various places some questions. I did a bunch of neurological sensory tests and passed all Of them- except the one where I follow a lazier pointer back and forth horizontally- apparently thr test showed my eyes jumping from one spot to another with the absence of smooth pursuit. Makes sense with the slow frame rate vision- but she wants to rerun the test be because it could be user/machine error since all other tests were fine.

Thanks for the bread advice, I think next time will be much better. One less egg seems like a good idea plus cinnamon. Stevia was actually alright, but I did go ahead and buy the more expensive, organic kind.. I heard they all taste slightly different.. Here's the link to the bars- http://thecandidadiaries.wordpress.com/2010/09/16/almond-bars-gluten-free-low-carb-delicious/ .. I omitted the chocolate and vanilla. Although, I think it would taste better with a little unsweetened cocoa powder and I need to pick up some good vanilla. I used a bit more coconut oil and some olive oil because I made my own mixed nut butter instead of almond butter. I read all about this yogurt but I have no idea where to buy Greek Yoghurt.. I do feel pretty bad about the way animals are treated in slaughterhouses. There was a documentary that turned my friend vegan/vegetarian but I didn't want to watch it- I already know it's bad. I've driven by a few slaugtherhouses while roadtripping across the U.S. and you can smell them miles away and visually they look disturbing. No room to roam and generally poor conditions- always out in the middle of nowhere. I wish I could help with the vegan recipes, but I don't really know any. I live less than 7 hours from Mexico so avocados are generally big here, they are high fat, low carb nutritional power houses. So i eat a ton of those with olive oil. Recipes with these are probably good- I eat them straight normally though. Don't know if they're common in the UK or not.

I voted Keppra and other. Keppra seems like it is likely worth a shot for those who haven't tried. If you need to stay on a benzo then I believe Klono is better than valium based on what i've witnessed from most people on the board. Additionally, Valium tends to not last as long I believe, meaning you'll be taking more. I never took klono but I did take valium for about a week when I first got HPPD. It was beneficial for anxiety, no effect on visuals though. There's lots of threads comments/threads popping about benzo use and the havoc that can amount after long term use, important things to evaluate. Please consider counseling, meditation or other forms of acceptance so that you can be benzo free before developing long term tolerance.

Made some flax bread tonight man, came out ok, I suppose.. Kind of spongy and wet.. (This how yours turned out?) Also made some coconut, flax and almond bars. Trying Stevia for the firs time, tastes decent. Sounds like your have a decent food market over there. I feel supermarkets are pretty poor quality (in terms of preservative,chemical free) here.. I basically survive off meat and vegetables nowadays.

How are things Penny? I started back up on this, been a bit foggy brained among other issues.. didn't realize that it can cause dieoffs too.. maybe this is why.

Hahaha sounds about right! I'm more interested in hockey starting back up than "American" football though.

How much are you guys taking? I'm just taking 600mg a day. 1000mg Vit C at a different time of day.. If I remember right it was recommended to supplement vit C when taking NAC. Don't quote me though!

I stumbled through those excerpts, i'm really bad at understanding the point behind all the medical terminology. Do you happen to know how changing the "spread of brain signals" could help us? Great that it has a affect on Parkinson's though, more proof that it may be beneficial in the dopamine theory. Ya staying up late with no sleep, I try to avoid this. But with school projects, cramming for tests, and a really counter-culture nocturnal time clock, I often go a night or a few sometimes with very little sleep. I commonly stay up until 3-4ish and wake up around 10-11. This feels more natural than the 11-7 or 8 time clock. That's cool that you feel Keppra is stirring things up a bit, hopefully it proves to be even more use for you! I just took my first dose about 30 minutes ago. Time to get my hyper-awareness on haha. Started off on 125 mg. Will taper up from here. Haven't noticed anything that being hyper-aware couldn't explain, I suppose. Brain's a little slow, foggy, but been like that a lot today I think. I don't think I have the XR, i'll confirm later though- the capsules are 500 mg each. I'll work up to 1000mg a day, one morning and one night.

Ya I was told by my Neuro that lack of sleep, stress and alcohol lower threshold for seizure like stuff. So I don't know, of course I also just started taking NAC and Vitamin B6 and Vitamin C 2 days prior.. I doubt it had anything to do with it, but I hate when something happens right when I start taking a med/supplement, then I feel obligated to blame something instead of maybe it's nothing.

Very interesting! Hey David, you mentioned quickly on an old candida thread something about an antibiotic but never went in to detail. I said in that thread that I had a bad things to say about Cipro and other quinolones. If you don't mind me asking what class are the antibiotics in that are mentioned below or that you were referring to? Thanks! "and the visual snow individuals often with a type of antibiotic known to have neurotoxic activity related to reduced inhibition/seizures."

Basically as many know I did have abnormality normality show up on first EEg so I have a script of Keppra and think I will start tonight after yesterday. I got very little sleep not last night but the night before, and woke up around 6 to help with a garage sale cause I'm broke. Felt as anyone would after 2 1/2 hours of sleep. Worked outside in triple digit heat until noonish then took a shower finally ate something and went out to run a errand. While I was driving, I so tired that I started feeling that nodding off feelling- where you are almost falling asleep but you jolt back awake. This happens to me alot when I'm trying to sleep, sometimes I'll fall asleep for a split second and actually jump from it . It's a lot like a wave passing over you or a pulse that keeps passing as a sensation in your head. Anyways, i wasn't actually falling asleep but very close, luckily I was close to where I was going. I kept fighting falling asleep and eventually I woke up a bit. I pulled off into a hotel parking lot cause I could feel something weird happening. Cause I wasn't falling asleep anymore but the pulsing was become very intense and still felt like a wave passing through my head at certain intervals. When it peaked the sound of my radio also intensified for a second and then back out. At this point, vision become very dreamy/dr/dr and also slow frame rate of vision became slightly worse. Cognitively, my brain stops comprehending things very well, I'll need to read things very slowly and try hard to understand it, listening seems distant and feels like it takes me longer to understand things being said.. I feel very disconnected during this time, more so than any normal Dp/Dr that i experience daily. Zero emotional connection to anything that I should find some relation to. Inability to think about long term issues and have to think hard about consequences or rewards of doing anything(when I do understand them there's no emotion that goes with it). This pretty difficult to explain, but this what I tried to while it was happening. I've had experiences similar to this before, used to happen alot the day after drinking(haven't drank in 13 or 14 months now, miss it, but gotta do what you gotta do). I could feel it come on and it would happen but my vision frame rate would be significantly slowed down. This time wasn't as intense as those, so instead of freaking out and not trying to think about it- I focused completely on it. Trying to identify ways to appropriate describe the feeling. After about 20 min, I needed to take of some business so I went in a interacted with a friend for about 10 min. I managed I think, considering everything was happening to me a the moment. Then I went and sat in my car for another 20-30 min until things seemed to go back down a bit. Drove home and was super tired and worn out, so went to sleep at 7 p.m. on a Saturday. Unheard of for me, i didn't wake up until 6 this morning. Still dark so slept until about 930. Still feeling a bit weird vision and cognitively wise this morning.. Last time this happened it my vision was really choppy for weeks and hppd was aggravated bad.. This time it wasn't as intense I guess, but def still feel a bit weird, and almost like it could happen again. Been about a year. I was really hoping these things wouldn't happen to me again, always afraid of how bad my vision can get and just pray it doesn't stay that way. Seen many doctors, some say it's nothing epileptic related, others say migraine, my current neuro says likely some kind of simple or focal seizure.

I believe thr only way to see anything on tests is through an quantitative EEg or perhaps spect and PET scans. Don't quote me on the last two tests cause I could be wrong, but I feel like I read something like that on the old board. I do know that those last tests are pretty difficult to find a place to do them.

I hate not working. I kept a job through early years of HPPD and it was helpful. When my vision got worse I quit working cause of the stress and haven't worked in a year now. Sucks, but I feel like I cant handle the stress, i eventually hit rock bottom. Even though every time I see an old person busting their ass at work, or a foreign guy who speaks more languages and has a higher education than most- working at a gas station etc, I feel so bad about not holding my own when there's people out their less fortunate giving their all. Need to get this sorted out. I do go to college mon-fri 9-5 but that isn't a job just sitting in a classroom and there are breaks etc. Graduate next semester so I have no choice but to get my shit together in the next 6 months.

Crazy, I had a colonoscopy due to gastritis, ulcers and polyps. Versed knocked me out cold, came to and my hppd wasn't as bad as it was before until the meds wore off. My memory was gone during that time though. I was asking the same questions cause I couldn't remember the answers people gave me ha. Hppd came back to normal after a bit. This is around the time the slow frame rate vision issue got worse though. Likely unrelated due to lots of stress around that time.

Know this all to well..

HBB, Did you have anxiety issues when you started Keppra? If so, did Keppra help there too? Are you a musician(Locrian in your email)?.

Pretty bummed to see that Keppra was just masking your symptoms. I had high hopes for you and that med. At the very least, a med without side effects that actually treats your symptoms is something to be very happy about.

You're a natural lyricist man, good with words. accept it!

Agreed, all I really miss is the pages of people who recovered. Every now and then it would help instill some hope when I was low.

Jake, Good posts above me here. All I can add is many of us, including myself know those symptoms all to well. Just hang on and attempt to control your response to them. In time, as you learn to not become upset about them you will move on. Long, tough road, but it is OUR road so hang in there. There are a few meds you can try but if at all possible try to avoid Benzo's. They're short term solution only and can make things much more complicated down the road. I think most important, besides stopping all the drugs is to set a goal. Even goals that seem unachievable, go after them. It'll help create some motivation and reason in your life- and you may just make it. Many people here have managed to do great things even with HPPD, so can you.

Keppra actually is an anti-seizure so you likely shouldn't worry too much about getting seizures from it. It's safer in that it is not going to cause Benzo type withdraws down the road and building tolerance is not as big of an issue. It's recommended that you build up Keppra in your system over a short time and yes, you need to take it everyday. Additionally you will need to taper down when you go off it but it likely won't have the Benzo withdraw issues as it's an anti-seizure med. Others here are much more knowledgeable and have tons more info for you.

haha I know before I opened the thread that those across the pond would respond as such!

Changing my diet also helped my acid reflux. Used to get it real bad all the time and it used to curb my hunger. Even had throat ulcers show up. I wanted to gain weight so now I eat significantly more calories then I use to and thats mostly why. Plus I never used oil in cooking and always ate really lean meats etc. I dont do that anymore. Grocery store for me is also mostly jus meat and vegetables although meats damn expensive. I don't buy organic but to be honest I really would like to. Just need to save every penny I can for a while. Since I'm eating more calories I eat alot at least 3000 calories, typically much more so grocery bills aren't cheap and I try to buy in bulk. Do you eat anything besides nuts, meat as vegetables? Also, if you running late and don't have time to cook anything what's your go to item? Curious, as this happens to me occasionally and tend to be at a loss.