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#1 sk8aplexy

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Posted 03 July 2013 - 10:35 PM

Read this:

http://newsroom.ucla...stery-1732.aspx

Then this:

http://newsroom.ucla...man-247169.aspx

 

Wow.



#2 lkl

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Posted 04 July 2013 - 06:04 AM

Interesting



#3 Ferret

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Posted 04 July 2013 - 10:54 PM

I've been following this research for a few months now and all I get are more questions.

Which came first? The increase in the histamine producing neurons or the death of the hypocretin producing neurons? BOTH histamine in the brain and hypocretin are involved in the control of the waking state. Are the histamine producing neurons the brain's back-up system? Is that why they are found in such increased numbers in PWN whose hypocretin producing neurons have been destroyed?

Here's a few more links to make your head explode.

 

http://jpet.aspetjou...t/336/1/17.full

 

http://en.wikipedia.org/wiki/Histamine

 

and, is it possible, that the following link is somehow connected?

 

http://www.foodsmatt...ine_joneja.html



#4 sk8aplexy

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Posted 04 July 2013 - 11:59 PM

More Wow. 

Thanks Ferret, for sharing such. 

I've read much of it and my head is still in one piece, thankfully; but, what's within it, is perhaps a bit more scattered..!

Although it is quite amazing how things tie back together, or line up. 

Infection/Virus/Antibiotics/Allergy/Food/common/normal/miscellaneous



#5 Hank

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Posted 05 July 2013 - 10:35 AM

Great articles- thank you both.

My N diagnosis continues to offer explanations to pieces of my medical puzzle:
- mystery: vitamin D deficiency (lots of time outside and light skinned)
answer: common in autoimmune illnesses

-mystery: pre-diabetic (not overweight, lots of exercise, decent diet)
answer: common comorbidity in PWN but usually associated with being overwieght

- mystery: routine blood work shows "chronic inflammatory" markers
no answer yet. Could this be related to high levels of histamine? I seems likely from these articles and I am curious.

In one of these recent articles posted, a comment was made that PWN have a high incidence of urinary tract infections.
In one of the histamine articles, it mentioned that high levels of histamine is related to urinary tract infections.
I think this is interesting since it may point to a cause.

I have apparently lived with N since childhood. Around the age that symptoms emerged, I had severe seasonal allergies. The only antihistamine then was Benadryl which makes you sleepy. This was the suspected cause of my daytime sleepiness, so it offered a plausible explanation which my family believed.

Into adulthood, the severity of my allergies decreased. I preferred to sneeze than take Benadryl. I did however, have chronic severe sinus headaches. Nasal surgery somewhat improved my ability to breathe through my nose.

After a few months on Xyrem, my sinuses drained excessively. When they stopped, I could breathe perfectly through my nose for the first time since childhood. I still find this curious and have found no explanation for my experience. I do not think it is unrelated or just coincidental.

Ferret- your food article mentioned shell fish and "gut" stuff. This rang a bell for me. I have eaten "fried shrimp" twice in my life. Both times were around N symptom onset. I had a severe allergic reaction and my eyes swelled shut for about 12 hrs. I have not eaten fried shrimp since, although I have always been able to eat un-fried shrimp otherwise. The doctor at the time said the process of frying changes the chemicals in the shrimp as an explanation. I am curious if the histamine in the shrimp gut is the culprit.

So many of my medical mysteries have been paradoxical and counter intuitive. It seems apparent that my body chemistry- between no orexin/hypocretin and high histamine- responds differently than the average person.

There seems to be factors that change my response to certain things physiologically that change the outcome. Too much of one thing, to little of the other, and the whole science experiment changes. Perhaps that is why so many of us have atypical responses to medications that vary from one PWN to the other. We may not share the same "quirks", but we have more quirks than expected.

I find this all helpful and appreciate your posts.

#6 sk8aplexy

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Posted 05 July 2013 - 03:10 PM

Thanks!  I appreciate your responses and perspective.

Your story is very much like mine in ways. 

Since childhood N (w/ Cataplexy too, I think you've mentioned in other post), sinus troubles and surgeries on such (Septoplasty with Turbinate reduction helped me to breathe again through my nose, which I'd not exactly realized had basically grown shut from the enlarged turbinates and deviated septom in response to such growths), allergies... 

For me, I tend to live years with something before even realizing it's occurring but maybe that relates to having had been born with Severe Hyperinsulinemia Hypoglycemia (a growth of insulin producing islets on the pancreas) so 90-95%+ of my Pancreas was removed at 4 months old; that I believe influenced me to expect health matters (as my parents were warned I had an increased risk to developing both Diabetes and Epilepsy -> which the Epilepsy was related to having had severe seizures from the overgrowth of insulin that my Pancreas had been producing prior to the surgery, again which was at only 4 months old) and basically assumed, for years and year, that the weekly headaches (severe, to point of debilitated for hours, with vomiting) and migraines all through childhood and teens were somewhat just normal, and then through early 20's assumed that the fatigue/weakness/fog/cloudiness/lethargicness too, was more of less normal (now I don't much believe in that word 'normal').  I should say though, from around 16 I definitely knew something was off, beyond odd, and to dive into Doctors trying to explain even a fraction of it, was simply put, 'beyond me.'  Oh, ear infections (ear tubes) and frequent flu's/viruses and/or congestion/coughs throughout late teens and especially my 20's.  Dental matters were/are never fun either, had a lot early on, like Denticianist Cyst...

Through my 20's I started to recognize some of such being clearly related to allergies (which my Mother and Brother have bad, living in the Midwest escalates it all dramatically).  At 27 I had an allergy test of like 25 common things, there were 2 of the 25 that I was 'not' allergic too.

Since adjusting so much, especially what I eat, which I must say eliminating sugars/flours of many sorts along with dairy and only eating strictly local organic meat in moderation (a pound or maybe two, each week or two);  I've been a lot better off.  Cataplexy is much less (but I avoid a lot of social activity and/or engagement much at all) but for a while Cataplexy was fierce, years back. 

Now, more than I can ever remember I do experience near daily nodding off and having to fight the sleep (more than I remember, but years back I was clueless to it being tiredness; somehow?).  I also do not tend to sleep well anymore, unfortunately. =<

 

As you more or less say, no 2 of us seem to be the same, even though things seem related and similar in terms of 'some' of what is underlying within.

 

In and out, here and there, now and then!

 

On, we all go!



#7 Ferret

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Posted 06 July 2013 - 02:06 PM

More for your interest...

http://ajcn.nutritio.../85/5/1185.full

 

Check out Table 5 which shows medicines that illicit a histamine response. There's quite a number of antibiotics listed.

Considering that the gut is the backbone of the immune system, how many times has ANY Doctor told you to re-populate the good bacteria (Lactobacillus varieties) by taking probiotics AFTER you've finished the antibiotics?

 

A question for Hank...do you think that Xyrem acted as an anti-histamine too?

This is fascinating stuff!



#8 Hank

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Posted 06 July 2013 - 03:54 PM

More for your interest...
http://ajcn.nutritio.../85/5/1185.full
 
Check out Table 5 which shows medicines that illicit a histamine response. There's quite a number of antibiotics listed.
Considering that the gut is the backbone of the immune system, how many times has ANY Doctor told you to re-populate the good bacteria (Lactobacillus varieties) by taking probiotics AFTER you've finished the antibiotics?
 
A question for Hank...do you think that Xyrem acted as an anti-histamine too?
This is fascinating stuff!


This is really interesting. I am curious if this is the reason for my blood work showing that I have inflammation.

I have no idea if Xyrem acted as an anti-histamine - I have been on anti-histamines before and never got the results I am still benefiting from today. I no longer get sinus pressure and headaches and I can breathe freely through my nose. My most recent blood work in December still showed inflammation while I was still on Xyrem.

My best guess is that it is related to restorative sleep. Something about it allowed my body to make some repairs. At the same time my sinuses drained and nose opened up, my dry cracked lips also healed. My hair got softer and less course. My skin was shinier and less dull- just a better complexion. I had some trouble with black heads and routinely used those pore strips- I no longer need those. I had to scrub my face a lot because of dry, dull skin- no need for that either. I know this makes me sound like Shrek before Xyrem- it just takes less effort to maintain myself now. I have no real answers for any of it, I am just glad it happened.

I appreciate your posts- I have enjoyed learning from them. Thank you.

#9 Ferret

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Posted 07 July 2013 - 12:09 AM

LOL! Shrek eh? If it's any consolation, I was the Wicked Witch of the West on Ritalin/Tofranil.

 

So, it's now been 28 days that I've been taking 100mg. of Modafinil (Provigil) once in the morning at 8 a.m....I haven't changed anything else....and keep in mind that it's been 25 years since I've taken meds for N&C. although, like Sk8aplexy, I've modified diet to eliminate "food allergies", "food sensitivities" or "histamine producers" (whatever you want to call it). In other words, pretty much a clean slate except for the N&C.

I like it. I have no intention of increasing the dose. No problems with sleep quality, falling asleep or staying asleep. Seem to be dreaming less, especially dreams written by Stephen King. When I wake, I'm instantly awake...no dragging my butt around for an hour. I feel alert, functional and kicking on all cylinders during waking hours. I'm also more mellow and less anxious in social situations. (are those last two sentences an oxymoron?)

I've also lost 7 pounds and, for the first time in my life, I'm receiving a signal to "stop eating/you're full". Interesting!

And then, tonight, I read this...

Both Provigil and Nuvigil increase the release of monamines, specifically catecholamines norepinephrine and dopamine, from synaptic terminals. They also elevate hypothalamic histamine levels.

 

Yikes! At least I'm aware of it and will watch carefully...and hubby will be watching even more carefully.



#10 lkl

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Posted 07 July 2013 - 05:09 AM

I don't think that histamine would be able to cross the blood brain barrier, so I'm wondering if CNS histamine levels are necessarily correlated to peripheral histamine levels.

 

Reading some of those articles, it seems like the H3 histamine receptor is mainly present in the CNS, rather than in the peripheral nervous system. So if Provigil and Nuvigil increase hypothalamic histamine via the H3 receptor, then perhaps they don't increase peripheral histamine levels as much. It seems that it is the peripheral histamine levels that are related to the allergy/histamine intolerance effects.

 

But since so many of us with narcolepsy have evidence of high levels of peripheral histamine as well, perhaps when the number of histamine-containing cells in the brain increase, the number of histamine-containing cells in the rest of the body also increase. Or maybe the correlation is more to do with PWN having an over-active immune system.

 

Not sure if any of that made sense, and I have no idea whether these hypotheses are true or not, just something I was thinking about.



#11 Ferret

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Posted 07 July 2013 - 10:03 PM

Iki, who knows? It's a big puzzle...in Spanish, "una rompecabeza" which literally means "break the head" and I really feel like banging my head against a wall. The body is unbelievably complicated. I take the pill orally so it's going through the gut and affecting me in the head. Heaven only knows what it's up to on the way there.

 

Hank, your experience with Xyrem clearing your sinuses has happened to at least one other person...I'm sure there are others.

http://www.talkabout...pic.php?t=17061

Here, someone talks about Xyrem being a powerful anti-histamine...however, there is no link to back up the info and I can't find boodiddleysquat in many searches.

http://www.talkabout...pic.php?t=25648

And there are just as many others who say that Xyrem made their allergies worse.

 

What works for one person doesn't work for another. To Newbies...hang in there, you'll find something that works for you...be patient.



#12 Hank

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Posted 08 July 2013 - 08:05 AM

Iki, who knows? It's a big puzzle...in Spanish, "una rompecabeza" which literally means "break the head" and I really feel like banging my head against a wall. The body is unbelievably complicated. I take the pill orally so it's going through the gut and affecting me in the head. Heaven only knows what it's up to on the way there.
 
Hank, your experience with Xyrem clearing your sinuses has happened to at least one other person...I'm sure there are others.
http://www.talkabout...pic.php?t=17061
Here, someone talks about Xyrem being a powerful anti-histamine...however, there is no link to back up the info and I can't find boodiddleysquat in many searches.
http://www.talkabout...pic.php?t=25648
And there are just as many others who say that Xyrem made their allergies worse.
 
What works for one person doesn't work for another. To Newbies...hang in there, you'll find something that works for you...be patient.


Thank you for the homework on this. I have never searched for others with similar experience- I appreciate it and learned something new from you again. Up until the point that my sinuses stopped draining, I thought I had a sinus infection. Then, as I mentioned, when it stopped I was breathing freely through my nose for the first time in ages.

I know from reading that Xyrem can help people heal faster, as a benefit of restorative sleep. My guess at the time was that Xyrem had finally given my immune system the needed boost to fight this chronic sinus infection.

I had a head CT scan and an MRI to rule out a brain tumor and aneurysm. The CT showed a thickening of my sphenoid sinuses, which can result from chronic infection.

This draining occurred last fall, when my allergies are usually stirred up. I was sneezing and blowing a fair amount which I was familiar with. But then it stopped and it was suddenly better than ever. I was so accustomed to the discomfort that the absence was almost unsettling.

For whatever reason, Xyrem finally helped my body to clear itself and heal.

#13 Faklam

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Posted 20 August 2013 - 09:40 PM

I've been following this research for a few months now and all I get are more questions.

Which came first? The increase in the histamine producing neurons or the death of the hypocretin producing neurons? BOTH histamine in the brain and hypocretin are involved in the control of the waking state. Are the histamine producing neurons the brain's back-up system? Is that why they are found in such increased numbers in PWN whose hypocretin producing neurons have been destroyed?

Here's a few more links to make your head explode.

 

http://jpet.aspetjou...t/336/1/17.full

 

http://en.wikipedia.org/wiki/Histamine

 

and, is it possible, that the following link is somehow connected?

 

http://www.foodsmatt...ine_joneja.html

"Our current findings indicate that the increase of histamine cells that we see in human narcolepsy may cause the loss of hypocretin cells," he said.

 

http://newsroom.ucla...man-247169.aspx



#14 ironhands

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Posted 20 August 2013 - 11:13 PM

I'm constantly sniffly.  Have been all my life.  Always thought it was related to croup, had it when I was 4.  Things are certainly beginning to make sense.



#15 Ferret

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Posted 20 August 2013 - 11:25 PM

Faklam...the link that you posted is the same as the second link in Sk8apexy's original post.

 

It is the word "MAY" which leaves me disconcerted. It is not a definitive one way or the other...that is what leaves me perplexed.



#16 IdiopathicHypersomniac

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Posted 21 August 2013 - 12:25 AM

The brain adapts.  The increased histamine may be the consequence, not cause, of the orexin-A loss.  Or it might be right, as I had allergies as a kid.  Having said that, this loss only applies if you have cataplexy.  If you do not, or have not developed it yet, then it has something to do with orexin-B -- something they cannot see.  Or the receptors that use the orexin-B are damaged.  They may be unevenly damaged in different areas.  That's why cataplexy, its severity, and the muscles it affects are different from one patient to another.

 

Bottom line -- you can only confirm half of the equation with just an LP.

 

It is my understanding that A and B have to be deficient for N&C -- If only B is less, you will not have cataplexy.



#17 Faklam

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Posted 22 August 2013 - 11:24 AM

The brain adapts.  The increased histamine may be the consequence, not cause, of the orexin-A loss.  Or it might be right, as I had allergies as a kid.  Having said that, this loss only applies if you have cataplexy.  If you do not, or have not developed it yet, then it has something to do with orexin-B -- something they cannot see.  Or the receptors that use the orexin-B are damaged.  They may be unevenly damaged in different areas.  That's why cataplexy, its severity, and the muscles it affects are different from one patient to another.

 

Bottom line -- you can only confirm half of the equation with just an LP.

 

It is my understanding that A and B have to be deficient for N&C -- If only B is less, you will not have cataplexy.

 

"(...) If you do not, or have not developed it yet,(...)"

 

By the way, is it possible to someone who have N without C "advance" to N with C?! If so, how often it happens? Never find any info about it.



#18 Faklam

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Posted 22 August 2013 - 11:32 AM

Faklam...the link that you posted is the same as the second link in Sk8apexy's original post.

 

It is the word "MAY" which leaves me disconcerted. It is not a definitive one way or the other...that is what leaves me perplexed.

 

Ferret,

 

By the way, considering these last two studies about the increase of histamine, one say that the increase of histamine is the cause, and the other say that is the consequence!

 

 

"According to the authors, the surprising increase in wake-promoting histaminergic neurons in narcolepsy may be a compensatory response to the loss of orexin/hypocretin neurons."

 

http://www.scienceda...9ORAo-yjY.email

 

 

 

"Our current findings indicate that the increase of histamine cells that we see in human narcolepsy may cause the loss of hypocretin cells," 

 

http://newsroom.ucla...man-247169.aspx



#19 Faklam

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Posted 22 August 2013 - 12:10 PM

Great articles- thank you both.

My N diagnosis continues to offer explanations to pieces of my medical puzzle:
- mystery: vitamin D deficiency (lots of time outside and light skinned)
answer: common in autoimmune illnesses

-mystery: pre-diabetic (not overweight, lots of exercise, decent diet)
answer: common comorbidity in PWN but usually associated with being overwieght

- mystery: routine blood work shows "chronic inflammatory" markers
no answer yet. Could this be related to high levels of histamine? I seems likely from these articles and I am curious.

In one of these recent articles posted, a comment was made that PWN have a high incidence of urinary tract infections.
In one of the histamine articles, it mentioned that high levels of histamine is related to urinary tract infections.
I think this is interesting since it may point to a cause.

I have apparently lived with N since childhood. Around the age that symptoms emerged, I had severe seasonal allergies. The only antihistamine then was Benadryl which makes you sleepy. This was the suspected cause of my daytime sleepiness, so it offered a plausible explanation which my family believed.

Into adulthood, the severity of my allergies decreased. I preferred to sneeze than take Benadryl. I did however, have chronic severe sinus headaches. Nasal surgery somewhat improved my ability to breathe through my nose.

After a few months on Xyrem, my sinuses drained excessively. When they stopped, I could breathe perfectly through my nose for the first time since childhood. I still find this curious and have found no explanation for my experience. I do not think it is unrelated or just coincidental.

Ferret- your food article mentioned shell fish and "gut" stuff. This rang a bell for me. I have eaten "fried shrimp" twice in my life. Both times were around N symptom onset. I had a severe allergic reaction and my eyes swelled shut for about 12 hrs. I have not eaten fried shrimp since, although I have always been able to eat un-fried shrimp otherwise. The doctor at the time said the process of frying changes the chemicals in the shrimp as an explanation. I am curious if the histamine in the shrimp gut is the culprit.

So many of my medical mysteries have been paradoxical and counter intuitive. It seems apparent that my body chemistry- between no orexin/hypocretin and high histamine- responds differently than the average person.

There seems to be factors that change my response to certain things physiologically that change the outcome. Too much of one thing, to little of the other, and the whole science experiment changes. Perhaps that is why so many of us have atypical responses to medications that vary from one PWN to the other. We may not share the same "quirks", but we have more quirks than expected.

I find this all helpful and appreciate your posts.

 

 

Thanks!  I appreciate your responses and perspective.

Your story is very much like mine in ways. 

Since childhood N (w/ Cataplexy too, I think you've mentioned in other post), sinus troubles and surgeries on such (Septoplasty with Turbinate reduction helped me to breathe again through my nose, which I'd not exactly realized had basically grown shut from the enlarged turbinates and deviated septom in response to such growths), allergies... 

For me, I tend to live years with something before even realizing it's occurring but maybe that relates to having had been born with Severe Hyperinsulinemia Hypoglycemia (a growth of insulin producing islets on the pancreas) so 90-95%+ of my Pancreas was removed at 4 months old; that I believe influenced me to expect health matters (as my parents were warned I had an increased risk to developing both Diabetes and Epilepsy -> which the Epilepsy was related to having had severe seizures from the overgrowth of insulin that my Pancreas had been producing prior to the surgery, again which was at only 4 months old) and basically assumed, for years and year, that the weekly headaches (severe, to point of debilitated for hours, with vomiting) and migraines all through childhood and teens were somewhat just normal, and then through early 20's assumed that the fatigue/weakness/fog/cloudiness/lethargicness too, was more of less normal (now I don't much believe in that word 'normal').  I should say though, from around 16 I definitely knew something was off, beyond odd, and to dive into Doctors trying to explain even a fraction of it, was simply put, 'beyond me.'  Oh, ear infections (ear tubes) and frequent flu's/viruses and/or congestion/coughs throughout late teens and especially my 20's.  Dental matters were/are never fun either, had a lot early on, like Denticianist Cyst...

Through my 20's I started to recognize some of such being clearly related to allergies (which my Mother and Brother have bad, living in the Midwest escalates it all dramatically).  At 27 I had an allergy test of like 25 common things, there were 2 of the 25 that I was 'not' allergic too.

Since adjusting so much, especially what I eat, which I must say eliminating sugars/flours of many sorts along with dairy and only eating strictly local organic meat in moderation (a pound or maybe two, each week or two);  I've been a lot better off.  Cataplexy is much less (but I avoid a lot of social activity and/or engagement much at all) but for a while Cataplexy was fierce, years back. 

Now, more than I can ever remember I do experience near daily nodding off and having to fight the sleep (more than I remember, but years back I was clueless to it being tiredness; somehow?).  I also do not tend to sleep well anymore, unfortunately. =<

 

As you more or less say, no 2 of us seem to be the same, even though things seem related and similar in terms of 'some' of what is underlying within.

 

In and out, here and there, now and then!

 

On, we all go!

 

I can remember that I slept very well only twice in my life. In the first time, 1989, I was 10 years old and it was after I left the doc with a prescription to an anti allergic (antihistaminc).

 

The Doc said that I was going to take that pill and would feel a lit bit sleepy. So, I arrived at home, took the pill and went to bed at 7pm. I waked up in the other day at 7pm without any interruption in my sleep! So, after this huge amount of sleep I was the superman during all day!!!

 

By the way, since I read this study I'm curious to try again an anti allergic pill LoL!!! But, at the same time, I'm also afraid that this medicine could be the cause of my N, because I can't remember EDS or other N symptoms before this episode! ;((

 

Yesterday I was reading about anti allergic/antihistaminc medication, and it says that the first generation of this medication used to stay at the body for at least 12hrs! I is exactly I had to sleep in 1989! Today, the new generations of this medicine stays up to 8hrs.

 

I think it should be good to start a forum here asking people to share theier experiences with antihistaminics medications!