Hppdsince1974

Swim should spend a couple days reading thru this forum. Much helpful stuff.

The researchers need to be educated ... those case studies may have been 'benign' but a lot of us know the decades of living bell that can result.

Letters need to be written.

my view of the relationship between hppd and ptsd is that the onset of hppd is terrifying and traumatic; i think it's the hppd that causes trauma;

you could make the case that the drug effects resulting in hppd can be considered traumatic in their own right - but not everyone has bad traumatic trips before the hppd onset..

We know hppd is similar to ptsd, but another one strikes me as analogous - land sickness, or mal de debarquement, is a lasting feeling of being on a boat after landing after a time at sea. It can be permanent in the worst cases.  But also comes with things like head pressure, anxiety, brain fog, difficulty finding words, short term memory problems, fatigue, light sensitivity.  Clonazepam seems to be the med of choice for severe cases.  There seems to be some research going on for this, and may come up with something relevant for us.

Seriously?!!??

I had this - for many years, but it came on a long time after my hppd began.

I used valium to abate it.

Where did you hear about a connection with hppd?

I had a very severe problem another many years later and the intervention for that, interestingly, did seem to cure me, at least of the "vertigo" or "disembarkment syndrome."  Details in PM if interested.

Well, that can be true, but I've found dietary approaches to be far superior to any supplement or med thus far, outside of LLLT. I'm not saying I know everything about the biological information underlying diet, but many individuals believe simply avoiding processed foods and what not will create a healthy diet.

 

I'd look into Dr. Peat - his whole entire dietary philosophy is about restoring brain function, or, in a healthy individual, enhancing brain evolution. Dr. Roger J. Williams is another. Oh, Dr. Peat also responds to practically every email sent to him personally, often within the same day of receiving it. I've had extensive conversations about my problems with him, and at first glance, his ideas seem too good to be true. Things such a eating raw carrot salads every day, breathing into a bag, supplementing with salt and baking soda, yet, these things have worked better for me than anything.. There were times that I didn't have etizolam or CES to control panic attacks and debilitating DP/DR - it was all Dr. Peat's ideas that helped at those times.

 

A ketogenic diet is typically one devoid of carbs, in which your body breaks down its own adipose tissue to create ketone bodies such as beta-hydroxybutyrate. The reason I asked you is because ketogenic diets are used for epilepsy, and are often far more efficacious than medication. Additionally, it has been known to help people with Schizophrenia and Alzheimers diseae; in fact, there are a lot of people who suffered from debilitating hallucinations, went on a ketogenic diet, then were free of any mental illness symptoms.  "She returned for a follow-up appointment 7 days after starting the low-carbohydrate diet. She was feeling well, and noted an increase in energy. She was seen again in clinic 19 days later. When asked how she was doing, she responded that she was no longer hearing voices or seeing skeletons. "

 

I personally don't think ketogenic diets are optimal long-term, but there are ways around this. Schizophrenics and psychotics routinely have diminished cerebral glucose metabolism, hence why ketogenic diets cure them of their ailments. Yet, simply fixing the foundation of the problem would work equally as well, if not better. This is where the likes of Dr. Peat comes in, with his seemingly ridiculous idea of consuming a diet with a large amount of fructose and sucrose in it. Interestingly, both of those sugars also serve as an alternative fuel to glucose, and are anti-convulsant (anti-epileptic). I posted about him recently in my Orthomolecular Approach to HPPD and Other Neuro-Psychiatric Illnesses thread. For instance, a lot of people end up being considered psychotic, when really they're hypothyroid. They then get institutionalized and pumped full of anti-psychotics, yet all along all they needed was some sugar and salt and maybe some thyroid meds. 

 

If one isn't eating correctly, NO amount of medications or supplements will work. One's body needs the proper lipids, carbs, proteins, nucleotides, etc. I'd bet my money that more psychiatric diseases have been cured through diet alone as opposed to any combination of medications. 

This is really interesting - I can't comment in depth, not having looked at the research you're citing, but I can attest to this: maybe it was coincidence and maybe not, but my hppd burst onto the scene as i was in the middle of something like the third large bowl of cheerios i was having for snack.  I've always associated the two, the massive sugar/carb input, and the onset of hppd.

Seems you can't go wrong on a low-carb diet anyway, but the link between excessive intake of sugar/simple carbs and disrupted perceptions seems very plausible

If you are one of the organizers, please send me a PM.  The smartphone thing was a little glitchy, but no matter.  I can help.  $ignificantly.  Get in touch and let's talk.

The iPhone app store couldn't find it, but I'd try it for sure.  Although, after any length of time using my phone, my eyes feel like old tomatoes.

I used to hear that a lot - that I was over-focusing on anomalies that everyone sees, and all the rest.  Like everything I suppose, there's a continuum:  to some extent, yes, I over-focused but that's because it was hard to ignore that shit that didn't used to be there was now there, undeniably.  So one of the best treatments is to practice "mindfulness" and other mental disciplines to control the amount of attention you give the visual artifacts, as best you can.  It's hard when the symptoms are severe.

You may have it mild now, it may get worse, it may not, and whether you "have it" or not, is almost irrelevant: you are noticing things, and they concern you enough to be here asking about it, so the cautionary principle says to be careful and don't tempt fate.  If you have it only this mildly now, count your blessings and stop doing drugs, because you really won't be happy if it develops into severe HPPD like some of us have had. 

"Be afraid." Fear exists for a reason.  Get clean.  Good luck!

if you can send me the link i'll give it a whirl

 

on a somewhat related aside... a friend of mine has been dabbling in buddhism and the monk who runs the temple he's been going to gave him some meditation instructions that just happened to correlate exactly with the method for controlling my visuals that I've worked out.. it all came down to first finding your visual (or spiritual) center.. and then instead of trying to observe it directly observe its surroundings and spin it. the guy actually used the same exact wording i do.. find the center and spin it.. feels good to know others out their could understand what i mean by that.

 

how that relates to this guided meditation i couldnt tell you yet without trying it but overall i find my method helps tone things down so will see how that works combined or compared to my own way

Nice! I like it !

I'm not sure I know what you mean, but I like it!

PM me for a link to the MP3.

Sorry, I haven't been on the forum for a bit.  Best way to get a copy is to PM me.  I will "go public" with it more widely but for now just send me a note.

So, to anyone curious about what this is, it's a psychologist (one of my many ex therapists) talking through a semi-hypnotic meditation on managing your state of mind with respect to having HPPD.  It's not going to eliminate any symptoms, exactly - it's about helping you deal with having symptoms. 

It's very calming, at least for most folks.  One person had some discomfort around the way the recording talks about breathing - but everyone's different.  Think of it as light hypnosis, geared to reducing stress, giving you new ways to think about experiencing the symptoms of HPPD, and giving you mental tools to get through it, and get on with your life.

Probably next week, I'll post something referring people to the psychologist's website, and those who can afford the recording may want to purchase it.  Anyone who cannot afford it can still get it from me.

I have updated the MP3, with some minor improvements to the sound and editing out some extra silences.  If you contact me I will send you a link to get it.

Thought people here might be interested in this.

http://www.timberlineknolls.org/trauma-ptsd-understanding-overcoming-february-18th/

My HPPD symptoms would always get worse if my immune system was compromised - a cold, flu, etc.  Doesn't mean the Lymes isn't somehow involved for you, but just saying I experienced more noticeable symptoms with other illnesses too.

Eye Movement Desensitization and Reprogramming.  There are many resources on the 'net regarding it - some say it's bogus, but there is evidence to support it being helpful. I went to a psychologist specializing in PTSD and related disorders.

I want to let you guys know about a meditation/guided imagery recording I had made, to help people with HPPD; I'm making it available to anyone who's interested, and if there's enough positive feedback I'll do some editing, post to YouTube, whatever I can do.  All your posts are encouraging and motivational - if you think this will help you make progress, PM me.

Is that 21 months that you've had HPPD, or 21 months on Keppra?

I'm kind of surprised not to get more replies to the post, or many requests for the recording.  What are your thoughts?  Does this seem of interest, or is there something about it that you feel is missing the mark?

I could really use your feedback, I'm thinking of putting some work in to editing, and then posting to YouTube and would like the thoughts of the folks here.

I don't know that an EEG shows anything (I've had eeg, mri, cat scans), though I remember reading one HPPD guy has diagnosed with a seizure disorder and taking anti-seizure meds cleared up his HPPD.  I betcha there's some connection but we're still in the dark ages here as far as anything definitive.

This is becoming the theme of HPPD recovery : try to manage your state of mind in the face of the symptoms, hang in there, get help and support, and it is possible to recreate a life.  You will have a different way of seeing, and perhaps feeling, the world, but your brain can adapt, people are incredibly strong and resilient.  

If you contact me via PM, you can try a guided relaxation tape that I had made, see if it helps you with managing your feelings, anxiety. Hang in there!

Folks ---

I have arranged for my therapist who worked with me on my PTSD from HPPD (and other stuff) to make a guided imagery/meditation recording.  His work has helped me tremendously in the past.  I'd like to have a couple of people try it before it "goes public" and get some feedback: did you find it helpful, any suggestions, etc.

After we finalize it, I will make it available to any HPPD sufferer on the forum who can't afford to buy it.  For those who can afford to pay the good Dr., a link to his site will be provided.

Please send me a PM if you would like an advance copy in order to review it with me.

Good luck out there!

There's an article about treatment with lamictal, the patient was on it for a year.

"During a year-long trial of lamotrigine, with a maximum dose of 200 mg, the patient experienced significant relief from her symptoms, some of which disappeared completely."

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3736944/

I didn't read the details of side effects in the trial, the patient had a lot of other things going on too - depression, no surprise.

Good luck, whatever you decide to do!

What felt good will return again.  Never give up.  Progress is never in a straight line, and being able to return to a better state of mind, even temporarily, is a great step forward.

did you do anything in particular that promoted your recovery?

valium mostly helped my vertigo oddly enough.  it makes you a little dumb and uncaring

i have begun work on this.