46 replies to this topic

[Toph4er]

I wonder if the community could support a forum on links to bad information about N and C.

Why? To depress us more? I wouldn't want to give those sites the satisfaction of receiving hits.

[sleepylama]

You have Ankylosing Spondylitis too? Well, not sure if I have it, but my mom is diagnosed with it and even at 19 I have a lot of joint trouble including the stiffness and pain. Could be a variety of things but the AS seems most likely since it is in the family. I have never been tested for it though.

Hey Toph4er,
Sorry I haven't replied sooner! If your mom has AS and you have even some symptoms, please see a doc. You can just get a physical and get bloodwork including sed rate (although those of us w/full blown AS do not hold much stock in sed rate), ANA, and HLA-B27 (the genetic marker for AS).

Unfortunately, AS is known to be hereditary, and even more unforutnately, more men have it than women, even though it is thought to be under diagnosed in women as the symptoms can be different.

AS isn't a death sentence any more than Narcolepsy, but it can be progressive. I don't know how advanced your mom's AS is or how she is treated for it, but left untreated, it can cause fusion of the spine as well as peripheral joints and there are a host of other illnesses that can occur, possibly regardless of treatment, as many of us have eye disease and other diseases even though our AS is treated.

A good source of info is spondylitis.org. I would hate to see you not get treatment now and end up not being able to move your back or turn your head, etc.

BTW, I don't know what type of music you follow, but I am a child of the 80s and grew up on Motley Crue (still love them, guilty pleasure I guess). Well Mick Mars of that group has a very advanced case. He has even said he didn't necessarily treat it like he should have when he was younger, he has had both hips replaced and hardly has any ability to move his spine or chest. Chest fusion is also a symptom and can cause lung issues...the chest is my biggest complaint just because I feel like I cannot breath when it is flaring up.

K, getting off my soap box now. Knowing what my son and I have been through (and will go through w/AS), I just try to stress to anyone who might be facing that type of illness to see a doc. Being in pain stinks, but being in pain and losing the ability to use your joints stinks or see stinks worse! At least w/my narcolepsy I sleep through a lot of my pain.

[Toph4er]

Yea...I have very stiff joints, horrid posture (I could never make it in the military for that reason alone!), joint pain, especially in my back, but pain everywhere none-the-less. My mom was actually just shy of an AS diagnosis, just a marker or two off but it's the best fit. Unfortunately they won't treat her for it but she is doing good, some bad mornings when it's hot out, but good none-the-less (aside from the pains, stiffness, etc...).

Odd that that could be considered "good"...oh well, we can't all be perfect
Chris"Toph4er"

[Kimberly]

I do think that Jenny was trying to point out that there are sites like "this" (Karmic Dictionary) that exist out there.

However, I put about as much stock in this as I do those "Click on this button to find out who your secret admirer is" graphics that pop up as spam advertising!

KARMIC DICTIONARY: Past Life Causes of Present Life Disorders

[Chuck Z.]

You're all gonna hate me, but I believe that there is truth in everything (even lies and misconceptions are rooted in truth). With an open mind, I can see how some symptoms of Narcolepsy can be controlled without medications.

Many years ago I wrestled with terrors and waking dreams. (I think I went in more detail in other posts so I'll keep this short). After becoming lucid, I could finally determine the difference and as a result I have never had a prolonged hypnagogic hallucination since.

BUT -- Two nights ago, I starting to have one -- the moment I starting seeing this huge yellowish ghosting of a medevil knight with lance on a horse barrelling down on me in my smallish bedroom, my brain went "uh, wait, what's up with that?!?" and within a perceived micro-second I knew the drill and immediately, the "film real" turned off!!! This actaully kept me "honest" -- I *still* have them, but I subconsciously switch them off so routinely that I barely remember it happening anymore.

So, the truth embedded here is that, yes, I believe that some symptoms can be overcome (to a point).

Another case in point -- my last appointment with my neuro a couple of months ago: We both like golf (and I know he was baiting me -- he's very mild mannered and reserved), so we got to talking about previous rounds we had played and some great shots we had pulled off and he started getting yippity and bouncy and smiling and raising his voice and I followed -- pretty quickly I "piffed" and immediately subconsciously put my emotions in check to avoid it happening again. So again, (to a point) I had control.

"piffs" -- a micro-sleep intrusive enough to make me lose track of my thoughts and surroundings but subtle enough that even a trained observer may not even notice. (credits for creation of yet another obscure english word, my loving wife )

Ok, enough -- I think you all get my point

[Toph4er]

Hate you? Why? I think most of us would agree that there is some truth in everything. I just don't buy into the old soul gone awry end of it, that's all .

Chris"Toph4er"

[Flaming Tiki]

wow..really fascinating. I once saw a psychic on tv and without knowing this girl (18/19 yrs old) asked if she was a sleep walker w/ other sleep problems...and the girl said, yes. The psychic then told her it was caused by a past life experience and most people with sleep problems began having them in late teens early 20s because as our lives begin to change...graduation, leave home, college...we bring up previous/past life troubles. She was told if she wanted it to stop sleep walking and such to seek treatments in hypnosis to hash out her troubles. You can't believe every psychic but I do think some folks are definately tapped into something 'else' that the majority is not. But I saw that years ago and never did 'take action' w/ my N *LOL*. Truth is, every now and then I have amazing dreams...conversations with people...only ocassional not so nice ones that I'm not sure I would want 'cured'. Is there something more to the diagnosis of N?...I believe there might be...ONLY emotional 'bad' tendencies...NO. But there is spiritually more going on w/ this PWN.

...but I'll plead the Charles Shultz's Linus saying here...(paraphrased)
"There are three things I do not discuss at length with others...Religion, Politics and the Great Pumpkin!"

Sweet Dreams All....

[Chuck Z.]

With an open mind, I have been "zenning" on the emotional aspect of it all and I must say, to some degree, a lot can be attributed to "emotional state" (past lives, pfft, hehe, but anywhoo).

I'm starting to realize that i'm "afraid" to fall asleep: Normally, the instant I close my eyes, the blue blobs start and morph into some subconsciously generated image (almost like I have no control over it and I'm just watching movies). I can then manipulate if I want to, but I find if I let it just "happen" then the next phase is "easy". Before realizing it, all is ultra-vivid and I am "inside" with the dream and then I am asleep -- sometimes I can remain lucid and "play along", sometimes I slip into the next "phase" of sleep (whatever that is for me, I don't know! LOL)

Now, there are rare times when my mind is clear and I close my eyes to pure black. After some time I have this absolutely terrifying sensation that I am falling into the abyss and startle myself awake. I suspect that this may be falling asleep "the normal way", but i just cannot deal with it! I have a paranoid sense that if I allow the sensation to progress, I will die -- horrible, but honest.

I can recall this same sensation when going under for surgery (I've had 15 to date for various things, multiple times in the first couple years of life for cleft palette/lip repair). Thinking out loud -- as I have been writing this -- it's dawned on me!!! Is the cause of my issues anesthesia???? Ponderous: it would be extremely freaky if EVERYONE with this condition has had some sort of major surgery in their lives (or have had been administered those types of chemicals to force sleep/coma - eg accidents and the like)????

That does it, look for a poll on surgery coming to a forum near you!!! LOL

HEY -- ANY DOCS READING THIS ?!? -- THOUGHTS? (is this quackery or a possibly valid theory?)

[Flaming Tiki]

Nope...I'll put a quick end to that theory! Sorry, no surgeries of any kind for this gal.
However, the fear of sleep thing instantly took me back to when I was little. I had some interesting dreams for a little kid. The one that sticks out was that the neighborhood was in a war and I could see a small mound of dirt the length of the yard with men there. So I slept with a lot of stuffed animals *LOL* they were my protectors from evil. Then, skipping ahead, in Jr High my routine Dr visit discovered I had a "heart murmur"....and that scared me awake alot but I would eventually just nod off. And then there is the fact I was very aware of world issues...i.e. the Chernobyl disaster kept my mind cruising for a good while at night. In my adult life, after my diagnosis, I've had fear of sleep (without going into detail) and I would listen to music to fall asleep. So...I can relate to that...but no surgeries. *knocking on wood*

[Chuck Z.]

Yes, thanks to me, this thread is starting to fly way off on a tangent (thank you, thank you very much! LOL). Touching on fear of sleep - I was talking with my other half about this and I realized that for as long as I can remember, I'd have to have lights on or tv to go to sleep with. I also remember that I used to go off and "hide" in a black closet or even a locker (long story, but anywhoo) so I could watch some "movies" on my own terms (I think I was around 6 or 7).

Ahh, I just wanted to share

[Toph4er]

No "fear of sleep" here...bring it on!

....I likes my sleep....

I don't see globs moving around...just a blam and it's there. Now, the dots I do see are more like this (Chuck, you've seen it): http://z15.invisionf...p?showtopic=283 and just read through the thread so I don't have to re-explain it all here

On an interesting note (lol) I acctually posted a question about these dots on a forum that was dedicated to the supernatural or something like that which had a thread about dots that were eerily similar in description (it was a Google search ).

Ah the connections!
Chris"Toph4er"

[Chuck Z.]

On an interesting note (lol) I acctually posted a question about these dots on a forum that was dedicated to the supernatural or something like that which had a thread about dots that were eerily similar in description (it was a Google search ).

Oh my! What are you saying!?!

That we see dead people and we don't even know it!?!

(Chuck apologizes to the M. Night Shyamalan fans in the group for the poorly obscure reference!)

Here I go on a tangient again, but -- Chris, do you by chance have nystagmus? I do, and I also think that "the dots" are a contributing factor for my nystagmus....

[sleepylama]

Hey Toph4er, the lama here and I wanted to chime in on your globs moving around. I looked at the photo you posted and the other details and it sounds a lot like Uevitis, which is an eye disease that causes inflammation in the eyes. It can be like looking through a rainy window, or lots of blurry dots all over, or blinding in some cases. It can also cause pheripheral vision damage. The challenge w/diagnosing and treating it is that if you are not having a flare up of it when seeing the eye doc, it is possible that it will not be caught for years, until the damage is permenant. Treatment is generally steroid eye drops and oral steroids for a bad flare up. If left untreated it has the real possibility of causing blindness. I know you had mentioned interest in my AS diagnosis in a different thread and said you have some symptoms and if you do have uevitis, it is a common diagnosis of people w/Auto Immune diseases. It was the first real diagnosis I received and my eye doc said he would bet his practice that I had a full auto-immune disease as yet to be discovered and encouraged me to keep pushing the docs to figure out what was wrong.

It might not be the same thing, but I wanted to get you this info just in case. Btw, the spots, globs, whatever can be seen w/the eyes open or closed. I used to wave my hand in front of my face as if I was swatting something my hubby would tell me it is just your vision, there isn't anything there.

I stay on top of the eye drops, but my peripheral vision is still going, however the drops really help w/the blurry spots, etc.

Take care!

[Toph4er]

ditto and my perif (right eye esp) is deteriorating...thanks for the heads up! and chuck, I don't really have a clue what that is, but I'll ask about it . But yea, the dots are CONSTANT, never go away...always there, always all over...DAMNED AUTOIMMUNE DISEASES!!!

Chris"Toph4er"

[Julie A]

Before realizing it, all is ultra-vivid and I am "inside" with the dream and then I am asleep -- sometimes I can remain lucid and "play along", sometimes I slip into the next "phase" of sleep (whatever that is for me, I don't know! LOL)

I know what you mean! I love when I know I am dreaming. Once I realize I am, I start falling in blackness and then I have complete control.
The first time, during my second MSLT, I had this horrible nightmare, then I realized I was dreaming,and it was like I was in The Wizard of Oz scene with the twister when everything is kind of just floating around. Then it was great and I had a wonderful dream, which I played a conscious part in . It felt like hours. Then I woke up and the sleep study tech guy said "your naptime isn't over. You can go back to sleep." AT this point I was completely refreshed and just laid there in the dark planning my next dream. Little did I know I hadn't discoved a permanent way to control your dreams. But it was a lot of fun!

Sorry to go off topic here, but I had to say it.

[Chuck Z.]

To follow up on the idea of a correlation of anesthesia and progression of narcoleptic symptoms. During my appointment with my neuro, we talked about this. I was a bit taken back (positively, of course) by how much his interest was piqued - to the point that he almost stopped listening to me and was browsing to study sites, LOL

As with other matters we discussed (eg Steroids), he referred me to the following sites.

http://www.iom.edu/
http://www.nationalacademies.org/

He considers these sites to be "gospel" because they are not swayed by special interests or funding from corporations.

[sarahlue]

The article advises: "The only way to discover the causes of "narcoleptic episodes" is for the person having them to carefully monitor their thoughts and feelings just prior to an attack."

My thoughts and feelings prior to an attack - "Must go to sleep.....sooo, soooo...tired! I must go to slllllkjgjodogj,.c...... *zzzzzzzz*


Honestly, that's all it is!
Sarahlue

[Damian]

The article advises: "The only way to discover the causes of "narcoleptic episodes" is for the person having them to carefully monitor their thoughts and feelings just prior to an attack."

My thoughts and feelings prior to an attack - "Must go to sleep.....sooo, soooo...tired! I must go to slllllkjgjodogj,.c...... *zzzzzzzz*


Honestly, that's all it is!
Sarahlue

Went to doctors cause feeling low had cat attack whilst trying to get my point across of how low my mood is at the moment, Flipping sent me straight to A&E to phsyciatric evaluation. What the f*** is that about. Just because I don't go away after getting my meds they trying to put me in mental ward for the second time, but cause I am not willing cause of past experience, To cut assesments etc down for you's, if I keep going in really low ,sometimes in tears due to everyday life and effects of meds,moods, dreams they don't know where to put me and cuase like I said I ain't willing to go in mental health unit, I could end up being put on a 28 day section. So this is how the people you are ment to go to WHEN THEY DON'T HAVE ANY ANSWERS FOR YOU THEY SHRUG YOU OF TO THE NEAREST PLACE WHERE YOU WILL BE FORGOT ABOUT, MAKING THERE LIFE EASIER NOT MINE.
Twats, Just cause they want to go and play golf and stuff.
Well at present I need my meds to keep me here, but all these so called doctors specialists, can all sit on my middle finger,mind you(they'll probably enjoy it).
people on this site and others show more support and advice that what I have ever had from them guys that think there better than us cause they have them white jackets, Well i'm gunna buy me own.
Anyway all those who have replied or giving me advice THANKS.
ESPECIALLY BAGPUSS FOREVER GRATEFUL

[petra]

I'm crap with words tonight but still wanted to answer - sorry if I've got things wrong.


I'm really sorry they did that Damian.

S/he's an utter *BEEP*wit!

I had that kind of stuff from G.P.s when talking about the - very reasonable and rational distress- considering the situation - and got cat from trying to talk about it, and from trying to handle their stupid *BEEP*wit responses, and so got threatened with section, again. But for me, so far, that was all pre diagnosis, and that's crap, but they had no training in N.


But post diagnosis, like what they done to you that's a whole different level of incompetence!


Their jobs to find something practical to help, and law is they can't section if psych treatment under section isn't going to help. Sorry youll know that.
Have you other practices nearby? Can someone come with you to talk/fight for you if you get cat in an appt? A local advocacy service could do it if you need privacy from family and friends. But they could need some education about N

really sorry they did this. and yeh, having our own white coats is about right.
be good to yourself.
Petra

[Damian]

I'm crap with words tonight but still wanted to answer - sorry if I've got things wrong.


I'm really sorry they did that Damian.

S/he's an utter *BEEP*wit!

I had that kind of stuff from G.P.s when talking about the - very reasonable and rational distress- considering the situation - and got cat from trying to talk about it, and from trying to handle their stupid *BEEP*wit responses, and so got threatened with section, again. But for me, so far, that was all pre diagnosis, and that's crap, but they had no training in N.


But post diagnosis, like what they done to you that's a whole different level of incompetence!


Their jobs to find something practical to help, and law is they can't section if psych treatment under section isn't going to help. Sorry youll know that.
Have you other practices nearby? Can someone come with you to talk/fight for you if you get cat in an appt? A local advocacy service could do it if you need privacy from family and friends. But they could need some education about N

really sorry they did this. and yeh, having our own white coats is about right.
be good to yourself.
Petra

thanks for that petra
I think its crazy that you have a similar experience, we might as well chew a brick , get more satisfaction out of it and have an attack.
your right I do know that about physc. If they haven't got resonable prove/suspision that you could be harmful to yourself or others around you, inc general public.
or you have voices in your head that tell you what to do.

if you don't fit into these categorys then don't really have much authority then, sleep disorder is not a mental health issue its a neurologic sleep disorder.


As for someone representing me I would rather get my own views across about our problem. you never know might even get our own shelf oneday rather than being at the bac of draw/cupboard