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one way in no way out


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Its like this there is now out hppd dp dr depresion one way in no way out battel of three year sadness no enjoyment any more this drugs make you suffer useless pain this pain dont make you harder just feeling this disorder thinking noting else i want geth out of this trying every thing to geth out of this feeling and disorder keep fighting mayby you find the way out if you find the way out you beat the hardest challenge

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Well i just passed the 8 year mark and i am more hopeful about life then ever. I understand my symptoms, how they can be treated etc. I eat, sleep, supplement/pop meds, and work out as an atleath. Yes i would low to get awaya from all of that and i do have a different perception.

 

In the end, when it comes top hope I think about AIDS/HIV before the treatment. Some people died just months after getting the meds while other would have died just months after the meds but still live a pretty good life now.

 

"Pessimism is a luxury we (Jews>Insert HPPD instead) cannot afford." - Golda meir. If you are a victim you either lay down and die or you fight with whatever means possible. At the hospital i said that i would fight this with every method there is even if it killed me becaused i refused to live the life of a walking dead.

 

Its okay to be upset and do all the grief in the beginning but at some point you got to decide. If your HPPD-pain level is at ten then you'll do anything, i mean anything to combat it or give up. You can see this in chronic pain victims, either you accept the pain or you get hooked on opiates and in the end die on the streets or similar from OD. It is a harsh true but pessimism wont get you know where. Projecting it to others doesnt help either.

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Merkan,

Perhaps living in a socialized society brings you some peace of mind and stability but here in the states the system can be pretty ruthless and with a disability that is hppd, unless a sufferer is hyper diligent and avoids all triggers then maintaining household and sanity can be very, very difficult.

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I'm in my 3 year mark. I'm starting to feel old school  :unsure:  :unsure:  :unsure:  :rolleyes:

 

That's the spirit !

 

 

Merkan,

Perhaps living in a socialized society brings you some peace of mind and stability but here in the states the system can be pretty ruthless and with a disability that is hppd, unless a sufferer is hyper diligent and avoids all triggers then maintaining household and sanity can be very, very difficult.

 

Am not familiar with live in Europe but here in the states is much of what you say.  There is enough wealth for people to make their life such as when someone else's pain brings them discomfort, they just push it away.  But as the economy continues to decline as it has for 50 years, many of those who could wall themselves up in isolation in their 'perfect' world will face a different reality ... and compassion isn't likely to be returned since it was never sent.

 

 

Its like this there is now out hppd dp dr depresion one way in no way out battel of three year sadness no enjoyment any more this drugs make you suffer useless pain this pain dont make you harder just feeling this disorder thinking noting else i want geth out of this trying every thing to geth out of this feeling and disorder keep fighting mayby you find the way out if you find the way out you beat the hardest challenge

 

Is the pain you speak of physical or emotional?

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Merkan,

Perhaps living in a socialized society brings you some peace of mind and stability but here in the states the system can be pretty ruthless and with a disability that is hppd, unless a sufferer is hyper diligent and avoids all triggers then maintaining household and sanity can be very, very difficult.

Well i might have taken some things for granted out of my context. Sorry for that. But as I recall i remember you taking the med from Dr.A and, correct med if i am wrong, cried tears of happines of getting your life back. You tried that on your own (sinemet) in another dose and did not get the same relief? I was thinking that lateley you have become more and more pessimistic about your condition.

 

Wouldn't it be worth litteraly everything, to get your hands on the exact meds, perhaps together with Dr.A and just go with it even if it was "just a trial" and catch breath for some years (or many)?

 

I do not know exactly what you have tried but since you had such luck with the meds wouldn't it be worth selling absolutely everything you got to afford them for a while, perhaps start building up some money with the new strenghts in order to keep going with the meds? Just focus on that.

 

If you haven't tried Keppra (expensive f*ckers) or the 100/25 sinemet (remember somewhere that you got 10/100), we can look in to that. Send a PM if so.

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This isn't about me or how I face this fucked up condition but about what's being done about it to help restore all our lives godamnit! You know what helps?

Nothing.

Nothing helps.

You want to take drugs to mask this condition go ahead. The drug formulation Dr A came up with isn't for long term use at all and while I may have felt some semblance of peace there was also this underlying feeling of weirdness like a muted sense of DR/DP which is why I cried but was nevertheless still there. One way in and no way out. This is bullshit I'm sorry to say and no way for anyone to live. We are fundamentally good people on this board but the ENTIRE medical community snubs us. Why? Are we not deserving of help and compassion? Are there any murderers, rapists or molesters here?

I don't think so but a bunch of people who are wired in a way where we cannot withstand the effects of drugs and if strong enough spend our entire lives fighting. It's not right and it's not fair and as far as I know the momentum that the founder of this board started is now nonexistent. So much work had been done but now we are all in limbo. Shitty place to be in the land that is HPPD a place in sorry to say lacks any hope.

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I would gladly keep this conversation going but your last post makes me feel that we are at a dead end. Yes, life is unfair! And guess what, people are worse of then us, yeah the trauma is where you came from and where your at and its unique to everyone but even if there is only a way to relieve symptoms, you owe it to yourselves to take that opportunity. Some people watch their kids die in horrible diseases, looses their families in car accidents etc. Where are their relief or "masking" of symptoms? They would take it in a hearbeat.

 

Yes our condition is unique but we are not! That is the first thing. Second, as said before, we do not have the luxury of being pessimistic. You can choose that path, its an easy path even if it will drag you in to the darkest corners of life. Being optimistic is not about believing on some kinda rainbow coloured unicorn solution to strike down from heaven, its about deciding to do what you can about your situation. You might be right that no one will save you with a cure but that does not give you any moral right to project that energy to others.

 

And about nothing happening, the genetic research is a huge step that has helped many people to co-op with this disorders. Our knowledge about a-z drugs from people on this board has also helped. Without this i would be an opiate addict for sure, perhaps dead or atleast homeless.

 

So, things are definitively moving forward but not in a straigth line anyone of us can follow.

 

You accept and adapt to the current situation or you die, literally or figuratively speaking. That is the truth about fairness in life!

 

I accepted my situation at the psych ward where I saw my life ending, but i accepted that this is the new conditions of my life and adaptation was the only thing i could do. By adapting I am now about to take a degree at an university, going from where i was being put to sleep with ambien in order to keep my sanity.

 

So, conclusion. Things like "deserve", "fairness" are total irrelevant words . Things are what they are! I do acknowledge that you have accepted that but it is up to you to decide what to do with it. And yes, i know that you put a lot of effort in lifting HPPD on the agenda but with little or no response. That is one way to adapt but now you have to adapt to the fact that there might (emphasis on "might") not come any good from it. Then you have to adapt to that.

 

At last, i have my own adaptions still to be done and I am working on it. Some times i take a break if i get too many setbacks in order to not get too negative about things but i always put myself back on that horse again. Because that is the only way to figuratively and literally survive

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Well said, Merkan!

 

I agree a lot on your philosophical thoughts on HPPD and how to deal with it. And I'm going down the same route and I'm fine, even though I would call my HPPD severe compared to others on this forum.

I know that yours is bad too which comes to the conclusion that a great mindset is important for us to cope with it. And I've learned that I even like some psychological effects of my HPPD. Even though I'm medicated with Keppra to take the edge off, I still have an non-materialistic, introvert and analyltic thought pattern. Without brainfog and DP/DR (that's reduced with 80% since start of HPPD) it can come handy. An expanded mind as I'm tripping forever, and when you can deal with it you can use it in social and work situations. Like you said we don't have time to act pessimistic about it. I certainly don't have time to be depressed, or to have anxiety or to waste time thinking on what could have happened or what could have not.

 

The truth is according to the physics of the universe is that this is the only way that it could have happened and I'm not talking about a destiny or fate but simply about the physical phenomena called cause and consequence. Where nothing disappears but it keeps transforming and shifting shapes and moves on. This is the only way, this is your life, and you better embrace it because this is who you are. If you don't love yourself, then how will the world love you back? Get friendly with your symptoms and they will become less harmful.

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what's being done about it to help restore all our lives godamnit!

 

As adults, its an individuals responsibility to care for their self.  That said, some tasks are monumental and require assistance.  Thus the benefits of family/community.  Are we our brothers keeper?  That should be obvious.  But then comes the issues of fairness and compassion.  There is also an individuals responsibility to work with what is offered.

 

You know what helps?  Nothing. Nothing helps.

 

Lots of things help.  It is just that there is no instant cure.  No simple answer.

 

You want to take drugs to mask this condition go ahead.

 

Does a crutch mask a broken leg?  Or does it provide support while the leg heals?  What if a person is so old that their bones will not knit correctly ... should they throw away their crutch because it isn't a cure?  Or should they take what they can get?  It is a personal choice.

 

How about when the pancreas no longer produces insulin?  Taking insulin doesn't mask the problem, it replaces what isn't being produced.  Otherwise diabetes kills quickly.

 

If masking a problem makes life livable, why not go for it?

 

The drug formulation Dr A came up with isn't for long term use

 

Tolcapone is hard on the liver and requires monitoring but is entirely manageable.  It is also gastly expensive.  This is Dr A's first attempt in the new direction of working with dopamine.  There are plenty of other directions.  If COMT is truly ones genetic weakness, then this or similar COMT inhibitors is the most direct route.  You don't know until you do genetic testing and trial (including errors).

 

a bunch of people who are wired in a way where we cannot withstand the effects of drugs

 

Genetics

 

spend our entire lives fighting

 

Most people would like to have some long vacations too.  Half the world is hungry.  Millions die in stupid wars that go on and on and on.  Yea ... it is not right

 

HPPD a place in sorry to say lacks any hope

 

Hope does not have to be black and white, all or nothing.  Even a perfectly healthy individual ages, slowly loosing ability, then dies.  Or early on gets hit by a car and lives the remainder of life crippled and in pain.

 

So categorize and prioritized what one's problems are.  Then address the easy first and take pride and joy in that step.  Then move to the next ...

 

 

Meds have helped me such that some symptoms are resolved even without them.  Others are just better.  And then there are those that are difficult.  Anxiety and depression suck the life out of what little energy a person may have.  These must be addressed quickly.  Learned helplessness is not healthy.  It is not surprising that Dr A says the #1 treatment for HPPD is CBT!

 

Meds have risks.  There are also risks involved in not medicating a medical condition.  I choose the meds now because the quality of life without them is such that I won't be around in the future.  If down the road a negative things happens because of my meds, then I'll have to deal with that then.  Each has a choice.

 

 

I have genuine hope and results.  And freely share these with others.  But I don't appreciate being kicked at because of it.  I DO get tired of people screaming the evils of medicine.  I don't like needing meds but life is so much much better with what I do than without.  And I am proud of what I've learned and accomplished.

 

Joy in life depends on appreciation what one does have and has accomplished.  The journey of life is smelling the roses and climbing the hills that are in the way.

 

If I'm a cheerful fool, so be it.  But it is a choice not a natural disposition

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Listen, I get what you guys are saying and I'm not trying to be overtly judgemental but coping with the use of medication is a necessary evil that bears no shame. Been down that road, tried a barrage of supplements and yes went as far as meeting Dr. A and participated in the trial. Thankful to a point but what I've learned (touching on CBT) that positivity, being close to people that love you, having a purpose and respect from your peers along with abstinence from drugs and alcohol will probably give you a fighting chance at life but I find it all a bit boring quite frankly. Even with a stable set up there are moments of weakness especially if you're on a good, stable mental streak and you want to let your hair down, even just a little; have a few beers, make friends with strangers, can't totally overdo it as they'll be hell to pay but even at two lousy beers there's hell to pay anyway. The stable set up, those of us are lucky to have it and lucky still for as long as it has lasted but to live as long as I have you learn that luck sometimes runs out. What do I do when the things I hold dear, that keep me mentally in line slip through my fingers. I'll tell you what, shit gets real damn quick and if there is one thing this condition has rendered in me is the inability to adapt to drastic change and yet adapting, being able to go where I want, do what I want, to have that freedom without the vice like panic and fear so familiar with this problem would be my penultimate fantasy. I call it normalcy.

Look fellas, when asked the question what can be done the answer is simple. This condition needs a face and a voice. There a psychologist who is writing a book about hppd who has a son that has contracted it. Ever hear of MADD (Mothers Against Drunk Driving) the woman who started that movement created a domino effect that altered policy in the states which lead to saving many lives. Her advocacy efforts changed the landscape and the conversation. Maybe this individual can spearhead a campaign for us all for the love of her son. She gets it, she's credible and given the right support and incentive would probably fight tooth and nail if a potential end game

Involves neurorestoration

http://www.facesofhppd.com

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It is good that that book is being published.  It will be interesting to see how it does since there are so many pushing to legalize recreational drugs and claiming they are absolutely harmless and that alcohol (currently legal) is the most dangerous drug.  Perhaps the anti-drug people will use it and HPPD will become well known.

 

As far as a stable set up, that IS a difficult problem for many with HPPD.  It is very easy to rock the boat emotionally and/or physically.  Really, that is one of the most difficult aspects of the disorder.  It is difficult to socialize when you have to eat and/or drink different.  Add an uncommon ethical or religious view and one is virtually isolated.  But that is the folly of bias/prejudice and is a whole other topic than HPPD.

 

But in spite of our problems, life has many options and things to offer even with restriction.  You have to focus on that and move with it.  If this site grows in membership, then eventually it may help some find social contact.  David did form this forum with the idea of providing individual help as its main purpose.

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If it weren't for the fact that he invested a considerable amount of time and resources in acquiring the credentials from university to work clinically and be taken seriously by academia and the science community including but not limited to working with Harvard researchers and being published then I would agree. I can't subscribe to the existence of this group to be so singular in its goals. Yes it's good to bring those of us together and learn, cope as much as we can but its not at all true that the goal was simply to create a safe space where we could congregate. Awateness and Advocacy can lead to research which is why we need to organize and not be left behind in the wake of fast approaching scientific discoveries in medicine.

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Yes it's good to bring those of us together and learn, cope as much as we can but its not at all true that the goal was simply to create a safe space where we could congregate. 

 

A while back, David PMed that he formed this site because a friend with HPPD committed suicide.  This was to be a support group to prevent such.  If he had other goals for the site, he never expressed such to me.  He spent personal time on HPPD papers.  And in the end, he spoke of creating another site for raising money.

 

At this point in time, there is no reason why the site cannot have several angles.  It is important that people don't 'off' their self.  There is plenty of opportunity to find commonality between symptoms and medication response - if people follow through and participate on such questions.  Then advocacy is also a useful direction.  It really depends on how members react and participate.

 

You speak of organizing ... how do you suggest such?

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There is always hope. Even if we piggy back on the visual snow ride, or some epilepsy/anxiety breakthrough (where $billions are invested). Then there is technology like nanotech to consider.

 

Even just seeing the contact at the LSD test giving us some time feels like a minor breakthrough. We all wait for the elusive post on here "I'm cured!". I still don't think it is the impossible dream.

 

As for organising and getting things done, it would be a damn sight easier if we didn't have hppd! Perhaps this woman writing the book could be a good spokesperson, as she is not bogged down with the illness.

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No but her son is!

She has an invested interest in getting help for her kids d and as a parent and professional understands the difference pre and post hppd! Nanotechnology, like many other scientific disciplines are making incredible strides but are not paying any attention to us and while I get the idea of piggybacking off another condition I can't help but feel withdrawn from this notion as our disease entity is unique unto itself despite sharing some similarities with others. As far as hppd getting in the way, it didn't stop David...

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I'm not even sure I believe in hppd as an individual condition anyway. I've always maintained that it is a collection of mental disorders that feed off each other. Fix the anxiety and the visuals will be less of a concern, fix the visuals and the anxiety will lessen. Just my view, but gives me more hope as anxiety treatment is BIG business.

 

Also, HPPD as a singular disorder is further complicated by the multi drug aspect. We could spend a $million on research into HPPD caused by LSD, only to find the results have zero meaning for any poly users who took LSD and mdma in their drug life.

 

Anyway, there are always fresh angles to explore. My life is quite alot better for finding Clonazepam after 12 or so years without any relief. If they can come up with something similar, without the addiction... I'd be fairly content with that. Yes, it is a band aid, but who cares.

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There are sometimes completely unexpected uses for a medication developed for X that end up helping Y

 

This caught my attention, earlier in the week:

http://www.bbc.co.uk/news/health-32151801

 

Obviously this shows the fucked up world of big medication companies... But also shows that someone on here could go in for treatment on a completely unrelated condition and discover their medication helps HPPD.

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There are sometimes completely unexpected uses for a medication developed for X that end up helping Y

 

This caught my attention, earlier in the week:

http://www.bbc.co.uk/news/health-32151801

 

Obviously this shows the fucked up world of big medication companies... But also shows that someone on here could go in for treatment on a completely unrelated condition and discover their medication helps HPPD.

 

Viagra is a failed blood pressure medicine.  Cialis (the limpest of the 3) is working on approval for be available as OTC blood pressure medicine.

 

 

 Yes, it is a band aid, but who cares.

 

Amen

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