GABA

[Guest guest]

I was reading the UK Doctors doc on this Amino Acid, wondering if

anyone has used it. Read that it may cause vidid dream, figuring

between this and LDN giving me happy dreams my brain may pop.

[Guest guest]

Victor, have you received the welcome package that Aletha sends out? It

contains information from Bob Lawrence, a doctor in the UK who takes LDN

(for MS) and prescribes LDN. Over the years, he has put together a protocol

for supplements, including GABA. I've been following the Gold Coast

Cure--the diet and supplements--with no change, so I'm going to now try Dr.

Lawrence's regimen.

Dr. Lawrence recommends one level tsp. each day, dissolved in a little

water. Take it before bedtime on an empty stomach; do not take it before

food. I'm already taking calcium and magnesium at night. He suggests

adding GABA and MSM to relieve spasticity.

He has been kind enough to answer my questions via e-mail and I am very

impressed with his straightforwardness and kindness.

[Guest guest]

In a message dated 12/3/2005 11:03:43 AM Eastern Standard Time, CLANDAU@... writes:

Arlene, I have no idea how to reconcile the mg and a tsp.

Hi

I have written to Dr. L. The reason I wondered is b/c when I was looking for a product to buy, the mgs were all different.

One product is 750 mg per 1/4 teas; 1 is 500 mg per 1/4 teas; 1 is 700 mg per 1/4 teas; and one was 5 grams for a whole teaspoon. (I believe a gram is 1000 mg.)

One of them said its not advisable to exceed 750 mg per day.

I just want to make sure that I don't take too much. I wish there were standard dosages for supplements! LOL

I'll let you know what he says, since you are planning to get on the gaba.

Be well

Arlene

[Guest guest]

Arlene, I have no idea how to reconcile the mg and a tsp. Why don't you

e-mail Dr. Lawrence and ask? His e-mail address is

bob.lawrence@.... I was sure you'll get a response. And when you

do, please share it.

[Guest guest]

Does GABA (same or similar to gamma hydroxy butyrate?) inhibit

sympathetic signaling? Are you still trying diamox, or doing

anything else for putative intracranial pressure? I ask because it

looks like intracranial hypertension activates the sympathetic

nervous system. Here is one citation:

http://tinyurl.com/22o97u

This is one of my favorite PubMed citations because it implies an

alternate scenario: ICH may compromise the immune system (by

inducing release of the immune suppressing cytokine IL-10) and this

could lead to infection. Antibiotics might help some of the

symptoms, but wouldn't relieve the ICH itself. It also cites the

use of a beta blocker, propranolol, and a few ICH patients are

prescribed this. Blood pressure is needed to help overcome some of

the compromised blood flow in the brain that occurs with ICH, so I

suspect that the anti-hypertensive effects of propranolol might

aggravate brain fog (one of several trials of high-dose benicar made

me struggle for consciousness) even if it alleviates anxiety a lot

and head pressure a bit. Still, this paper's use of propranolol

helps define mechanism (epinephrine).

It was reported previously here that you can build tolerance to GABA

agonists. Has that happened to you?

Matt

>

> Dear Matt

> You could always try readily available gamma hydroxy butyrate :-)

> Regards

> R

> ----- Original Message -----

>

[Guest guest]

Dear Matt

As I understand it, GABA (gamma amino butyric acid) is a primary inhibitory neurotransmitter and as such, would inhibit sympathetic signalling. I haven't looked for refs but sorting the basic info from the multitude of papers should be reasonably possible.

As for Diamox, 250 mg once daily reduced the headache for a few days but when I attempted to ramp up to the duc's recommendation of 250 four times daily I went out backwards. I've since discovered that I have no headache on waking in the morning (and no tinnitus ) until I move my head. first head movement initiates the tinnitus and starts the headache which establishes its steady state by the time I am on my feet. If I can go to sleep in the afternoon with my head wedged so that I sleep face up, I wake with a clear head. doesn't last though.

Interestingly, I do telephone support for ADHD sufferers, I talked to one person who was abusing Xanax to the amount in excess of 20 mg a day. I was stunned. I take 0.5 mg and have noticed that the effect is not as pronounced as it once was but after 10 years on it, I actually think I am surviving reasonably well. It cuts down sensitivity to light, sound, pain and touch enough to allow me to get to sleep without interfering with sleep patterns. So I guess I am building tolerance, but on the other hand, I am probably needing it less.

Regards

R

[infections] Re: GABA

Does GABA (same or similar to gamma hydroxy butyrate?) inhibit sympathetic signaling? Are you still trying diamox, or doing anything else for putative intracranial pressure? I ask because it looks like intracranial hypertension activates the sympathetic nervous system. Here is one citation:http://tinyurl.com/22o97uThis is one of my favorite PubMed citations because it implies an alternate scenario: ICH may compromise the immune system (by inducing release of the immune suppressing cytokine IL-10) and this could lead to infection. Antibiotics might help some of the symptoms, but wouldn't relieve the ICH itself. It also cites the use of a beta blocker, propranolol, and a few ICH patients are prescribed this. Blood pressure is needed to help overcome some of the compromised blood flow in the brain that occurs with ICH, so I suspect that the anti-hypertensive effects of propranolol might aggravate brain fog (one of several trials of high-dose benicar made me struggle for consciousness) even if it alleviates anxiety a lot and head pressure a bit. Still, this paper's use of propranolol helps define mechanism (epinephrine).It was reported previously here that you can build tolerance to GABA agonists. Has that happened to you?Matt>> Dear Matt> You could always try readily available gamma hydroxy butyrate :-)> Regards> R> ----- Original Message ----- >

[Guest guest]

Head position has definitely been affecting my headache situation too, although for me I'm quite sure it has to do with my newly aggravated sinuses. If I lie on my left, I'll wake up with a left side headache. If I lie on my right, right side headache. And it's next to impossible for me to sleep in one position...dang! I've also noticed recently that when my sinuses are becoming stuffed/inflamed, just turning my head or walking a few steps, unless done very gingerly, will make my brain feel like it's not in sync with the rest of my body. For instance, I stop suddenly and wham, a fraction of a second later my brain feels like it has slammed into the front of my head. Ow!...not fun. I've been trying to keep my sinuses as moist as possible (without being overly wet) to avoid this stuffing up. I'm fascinated by the rubber cement like goo that I'm sometimes

able to coax out. I'm sure this is what biofilms (multicellular communities) are made of and why they're so impervious to treatment and why they build up without being detected by us. They just sit there glued to their seats (or in this case, sinus walls). The same biofilm formations affect other parts of our bodies, like the kidneys, as cited in the study posted. Not to mention it coats the back of teeth and turns into plaque, then literally eats through bone. It's strong enough to cause cavities, no wonder dental/sinus infections are such bad news and go undetected as they slowly much tracts through our heads. penny Windsor <rwindsor@...> wrote: Dear Matt As I understand it, GABA (gamma amino butyric acid) is a primary inhibitory neurotransmitter and as such, would inhibit sympathetic signalling. I haven't looked for refs but sorting the basic info from the multitude of papers should be reasonably possible. As for Diamox, 250 mg once daily reduced the headache for a few days but when I attempted to ramp up to the duc's recommendation of 250 four times daily I went out backwards. I've since discovered that I have no headache on waking in the morning (and no tinnitus ) until I move my head. first head movement initiates the tinnitus and

starts the headache which establishes its steady state by the time I am on my feet. If I can go to sleep in the afternoon with my head wedged so that I sleep face up, I wake with a clear head. doesn't last though. Interestingly, I do telephone support for ADHD sufferers, I talked to one person who was abusing Xanax to the amount in excess of 20 mg a day. I was stunned. I take 0.5 mg and have noticed that the effect is not as pronounced as it once was but after 10 years on it, I actually think I am surviving reasonably well. It cuts down sensitivity to light, sound, pain and touch enough to allow me to get to sleep without interfering with sleep patterns. So I guess I am building tolerance, but on the other hand, I am probably needing it less. Regards R [infections] Re: GABA Does GABA (same or similar to gamma hydroxy butyrate?) inhibit sympathetic signaling? Are you still trying diamox, or doing anything else for putative intracranial pressure? I ask because it looks like intracranial hypertension activates the sympathetic nervous system. Here is one citation:http://tinyurl.com/22o97uThis is one of my favorite PubMed citations because

it implies an alternate scenario: ICH may compromise the immune system (by inducing release of the immune suppressing cytokine IL-10) and this could lead to infection. Antibiotics might help some of the symptoms, but wouldn't relieve the ICH itself. It also cites the use of a beta blocker, propranolol, and a few ICH patients are prescribed this. Blood pressure is needed to help overcome some of the compromised blood flow in the brain that occurs with ICH, so I suspect that the anti-hypertensive effects of propranolol might aggravate brain fog (one of several trials of high-dose benicar made me struggle for consciousness) even if it alleviates anxiety a lot and head pressure a bit. Still, this paper's use of propranolol helps define mechanism (epinephrine).It was reported previously here that you can build tolerance to GABA agonists. Has that happened to you?Matt>> Dear Matt> You could always try readily available gamma hydroxy butyrate :-)> Regards> R> ----- Original Message ----- >

[Guest guest]

Matt,

So ICH would actually contribute to infection through immune suppression. Do you think anything that decreases ICH even temporarily and even without getting to the cause of the ICH (ie infection/inflammation) would actually restore immune function and therefore help break the circle?

Would diamox or other similar substances, do the trick?

What role do you see for GABA (inhibitors?)?

I get massive, dreadful ICH type headaches on a regular basis

Nelly

[infections] Re: GABA

Does GABA (same or similar to gamma hydroxy butyrate?) inhibit sympathetic signaling? Are you still trying diamox, or doing anything else for putative intracranial pressure? I ask because it looks like intracranial hypertension activates the sympathetic nervous system. Here is one citation:http://tinyurl.com/22o97uThis is one of my favorite PubMed citations because it implies an alternate scenario: ICH may compromise the immune system (by inducing release of the immune suppressing cytokine IL-10) and this could lead to infection. Antibiotics might help some of the symptoms, but wouldn't relieve the ICH itself. It also cites the use of a beta blocker, propranolol, and a few ICH patients are prescribed this. Blood pressure is needed to help overcome some of the compromised blood flow in the brain that occurs with ICH, so I suspect that the anti-hypertensive effects of propranolol might aggravate brain fog (one of several trials of high-dose benicar made me struggle for consciousness) even if it alleviates anxiety a lot and head pressure a bit. Still, this paper's use of propranolol helps define mechanism (epinephrine).It was reported previously here that you can build tolerance to GABA agonists. Has that happened to you?Matt>> Dear Matt> You could always try readily available gamma hydroxy butyrate :-)> Regards> R> ----- Original Message ----- >

[Guest guest]

ooops I meant Gaba agonists (or is it antagonists?)

Nelly

[infections] Re: GABA

Does GABA (same or similar to gamma hydroxy butyrate?) inhibit sympathetic signaling? Are you still trying diamox, or doing anything else for putative intracranial pressure? I ask because it looks like intracranial hypertension activates the sympathetic nervous system. Here is one citation:http://tinyurl.com/22o97uThis is one of my favorite PubMed citations because it implies an alternate scenario: ICH may compromise the immune system (by inducing release of the immune suppressing cytokine IL-10) and this could lead to infection. Antibiotics might help some of the symptoms, but wouldn't relieve the ICH itself. It also cites the use of a beta blocker, propranolol, and a few ICH patients are prescribed this. Blood pressure is needed to help overcome some of the compromised blood flow in the brain that occurs with ICH, so I suspect that the anti-hypertensive effects of propranolol might aggravate brain fog (one of several trials of high-dose benicar made me struggle for consciousness) even if it alleviates anxiety a lot and head pressure a bit. Still, this paper's use of propranolol helps define mechanism (epinephrine).It was reported previously here that you can build tolerance to GABA agonists. Has that happened to you?Matt>> Dear Matt> You could always try readily available gamma hydroxy butyrate :-)> Regards> R> ----- Original Message ----- >

[Guest guest]

>

> Matt,

>

> So ICH would actually contribute to infection through immune

suppression. Do you think anything that decreases ICH even

temporarily and even without getting to the cause of the ICH (ie

infection/inflammation) would actually restore immune function and

therefore help break the circle?

**********ICH doesn't get a lot of research, so few statements

regarding the mechanics of the disease can be made with confidence.

As I said recently:

http://tinyurl.com/2xu6r9

there is a trend towards viewing venous sinus stenosis as a final

common pathway for many instances of ICH. The ICH may be provoked

by any of a variety of factors but if the stenosis forms then the

ICH may persist even after the instigating factor is gone. This

would predict that stenting the stenosis would be therapeutic. Yet

the evidence on this is inconsistent. Some reports (on PubMed and

on forums) are positive; others not so much. Perhaps the theory is

inadequate. Or perhaps the stents only work well for those who have

progressed to a chronic, self-perpetuating phase whereas they don't

work so well for patients still suffering from the instigating factor

(s).

ICH is often temporary. In cases where ICH has not been present for

years and where the instigating factor is no longer present, I think

your hope of breaking the cycle may be valid. But the stenosis (the

narrowing of the vein) probably leads in time to a permanent loss of

the vessel's integrity. I'm guessing, that is, that the vein

becomes more collapsible the longer it is forced to adopt the

narrowing. I'm basing this in part on what tends to happen with

apnea. As a patient with apnea creates a vacuum in his/her airway

hundreds of times per night, the airway becomes ever more

collapsible over the years. This aggravates the apnea. So if

the " final common pathway " is true, and if the venous sinus loses

its integrity over many years of ICH, then I doubt that a temporary

intervention can break that particular cycle.

But you have a different cycle in mind, I think. A handful of

papers on PubMed report that Lyme can provoke ICH. Since ICH may be

immune suppressive, it may aggravate the infection. If you have

both ICH and Lyme, then I would think a coordinated approach would

be most likely break that cycle. Other " occult " infections (where

I'm using " occult " to distinguish it from bacterial meningitis which

I doubt is a problem for PWCs visiting this forum) might provoke

ICH, but to my knowledge none are as well documented for this as is

Lyme.

But even if that case applies to you, it doesn't mean that the first

self-perpetuating cycle isn't also operative--you could still have a

self-perpetuating venous sinus stenosis.

I was suggesting a different scenario. One in which the infection

is not contributing to the ICH, but rather the infection is entirely

a secondary phenomenon--secondary to the ICH. Sort of like

infections that are secondary to untreated diabetes.

To get a clearer view on this, my goal is to have a lumbar puncture

with enough CSF drained to normalize the pressure. Some of the ICH

patients feel fantastic for half a day to several days (before the

pressure builds back up). I'd also like to see Dr. Glueck about

possible clotting disorders (a cause of ICH via venus sinus

thrombosis).

>

> Would diamox or other similar substances, do the trick?

*********I plan on trying a diamox/prilosec combo in a while. I

don't know what options you have in France, but there are two papers

on PubMed reporting efficacy of marijuana for ICH (apparently the

therapeutic mechanism is the same as that for glaucoma, but I'm not

sure). I can find those citations if you want.

>

> What role do you see for GABA (inhibitors?)?

******I know virtually nothing about GABA. I was wondering, though,

if the inexplicable physical anxiety some of have (not emotional for

me; just a physical/muscular tension) is due to sympathetic

activation by way of ICH, not to some underlying dysfunction of a

neurochemical pathway. I'm wondering, that is, if GABA works for

some people by relieving some of the negative consequences of ICH

without relieving the ICH itself.

>

> I get massive, dreadful ICH type headaches on a regular basis

*******The conventional approach is to be evaluated for papilledema

by a neuroophthalmologist. Despite what many doctors might

regurgitate from their textbooks, the absence of papilledema doesn't

rule out ICH, but if you have papilledema then this is useful info

to have. I read one paper on ICH reporting the continous monitoring

of intracranial pressure in an ICH patient. When the pressure would

spike (called a pulse wave, or waveform) the patient would feel

worsening head pain. The point is, the relationship between spikes

in intracranial pressure and head pain has been documented.

Matt

>

> Nelly

[Guest guest]

Matt and all,

I have saved a bit of what you posted in order to comment here on my

latest experiences with whatever is going on in my head. I have no

answers - just sharing experiences. I finally did get the referral to

the neuro-opthamologist, so hopefully soon I will at least have a

diagnosis.

Matt wrote:

This would predict that stenting the stenosis would be therapeutic.

Yet the evidence on this is inconsistent. Some reports (on PubMed

and on forums) are positive; others not so much. Perhaps the theory

is inadequate. Or perhaps the stents only work well for those who

have progressed to a chronic, self-perpetuating phase whereas they

don't work so well for patients still suffering from the instigating

factor (s).

****I saw a chiropractor Friday. He did some gentle pressure-like

stretching of the back of my neck and also some massaging of the area

just above both ears. His other treatments were what seemed to be

Chinese accupressure. I had asked him if there was something he could

do to improve flow of spinal fluid - assuming that was even what was

wrong with me. He said he could. I must say I had the best day Friday

I have had in 14 months. Saturday and today are better but not as

good as Friday. I will post more after my Tuesday appointment.

Matt wrote:

In cases where ICH has not been present for years and where the

instigating factor is no longer present, I think your hope of

breaking the cycle may be valid. But the stenosis (the narrowing of

the vein) probably leads in time to a permanent loss of the vessel's

integrity.

*****I am hoping that there might still be some mechanical way to

keep the flow open without a stent.

Matt wrote:

> But you have a different cycle in mind, I think. A handful of

> papers on PubMed report that Lyme can provoke ICH. Since ICH may

be

> immune suppressive, it may aggravate the infection. If you have

> both ICH and Lyme, then I would think a coordinated approach would

> be most likely break that cycle. Other " occult " infections (where

> I'm using " occult " to distinguish it from bacterial meningitis

which

> I doubt is a problem for PWCs visiting this forum) might provoke

> ICH, but to my knowledge none are as well documented for this as is

> Lyme.

*****Several of the Lyme doctors replied to me on this that indeed

Lyme can precipitate ICH. I just came across one interesting lead on

borrelia being intracellular - never mind the L forms and cyst forms -

it's the stuff inside the cells that will kill you. So anyway,

someone suggested that the antivirals might be working to kill

intracellular borrelia. (Please excuse if I posted this earlier -

brain is fried.)

Matt wrote:

I plan on trying a diamox/prilosec combo in a while. >

*****How does Prolosec help? I would be pretty creeped to take it

since it might reduce stomach acid and increase potential infection,

but I could be confused.

Matt wrote:

I know virtually nothing about GABA. I was wondering, though,

> if the inexplicable physical anxiety some of have (not emotional

for

> me; just a physical/muscular tension) is due to sympathetic

> activation by way of ICH, not to some underlying dysfunction of a

> neurochemical pathway. I'm wondering, that is, if GABA works for

> some people by relieving some of the negative consequences of ICH

> without relieving the ICH itself.

******I just bought some GABA but haven't had a clear picture that it

was worth taking yet - partly due to brain fog. At the chiropractor's

Friday he did this test where I had to focus my eyes to look left and

then up to the left. I FREAKED OUT. I felt like I was having an

anxiety attack. There is definitely some link between the vision, the

head pressure, and muscle tension/anxiety that feels like a mild

seizure. IT IS NOT A GOOD FEELING, and I get this throughout the

night waking me up.

Matt wrote:

Despite what many doctors might regurgitate from their textbooks, the

absence of papilledema doesn't rule out ICH, but if you have

papilledema then this is useful info to have.

*****I don't have papilledema, but I now have one dilated pupil and

blurred vision in that eye. Something is gradually, over time, being

damaged.

Matt wrote:

I read one paper on ICH reporting the continous monitoring

> of intracranial pressure in an ICH patient. When the pressure

would

> spike (called a pulse wave, or waveform) the patient would feel

> worsening head pain. The point is, the relationship between spikes

> in intracranial pressure and head pain has been documented.

********I get these spikes of horrible headache. They seem related to

the longer I am up. I am better in the morning. If I have some stress

I get much worse. Also, moldy buildings make me worse, but this may

be because the toxic mold raises my blood pressure extremely high.

Then standing for awhile drops my blood pressure. These ups and downs

could be contributing to the head pain.

a Carnes

[Guest guest]

> I plan on trying a diamox/prilosec combo in a while. >

>

> *****How does Prolosec help? I would be pretty creeped to take it

> since it might reduce stomach acid and increase potential

infection,

> but I could be confused.

I talked about prilosec (omeprazole) before:

http://tinyurl.com/2rvcx2

See the two citations reporting the ability of prilosec to reduce

production of CSF at the choriod plexus. That's what diamox does.

Diamox is unpleasant to take. I'm hoping that adding prilosec will

allow me to get more relief with lower doses of diamox. One of the

common side effects of diamox, which I experienced, is increased

stomach acid. Prilosec is occasionally prescribed to ICH patients

for this reason alone (with no apparent awareness of the possibility

that the prilosec may help the ICH itself). So the idea here is

that the combo will have a combined therapeutic effect for ICH,

while countering each other's opposing effects on stomach acid.

Matt

[Guest guest]

Dear Nelly and Matt

I had my tongue too firmly planted in my cheek when I raised the issue of GHB. The chickens have come home to roost.

http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed & list_uids=2089952 & cmd=Retrieve & indexed=google

Regards

R

[infections] Re: GABA

>> Matt,> > So ICH would actually contribute to infection through immune suppression. Do you think anything that decreases ICH even temporarily and even without getting to the cause of the ICH (ie infection/inflammation) would actually restore immune function and therefore help break the circle?**********ICH doesn't get a lot of research, so few statements regarding the mechanics of the disease can be made with confidence. As I said recently:http://tinyurl.com/2xu6r9there is a trend towards viewing venous sinus stenosis as a final common pathway for many instances of ICH. The ICH may be provoked by any of a variety of factors but if the stenosis forms then the ICH may persist even after the instigating factor is gone. This would predict that stenting the stenosis would be therapeutic. Yet the evidence on this is inconsistent. Some reports (on PubMed and on forums) are positive; others not so much. Perhaps the theory is inadequate. Or perhaps the stents only work well for those who have progressed to a chronic, self-perpetuating phase whereas they don't work so well for patients still suffering from the instigating factor(s).ICH is often temporary. In cases where ICH has not been present for years and where the instigating factor is no longer present, I think your hope of breaking the cycle may be valid. But the stenosis (the narrowing of the vein) probably leads in time to a permanent loss of the vessel's integrity. I'm guessing, that is, that the vein becomes more collapsible the longer it is forced to adopt the narrowing. I'm basing this in part on what tends to happen with apnea. As a patient with apnea creates a vacuum in his/her airway hundreds of times per night, the airway becomes ever more collapsible over the years. This aggravates the apnea. So if the "final common pathway" is true, and if the venous sinus loses its integrity over many years of ICH, then I doubt that a temporary intervention can break that particular cycle.But you have a different cycle in mind, I think. A handful of papers on PubMed report that Lyme can provoke ICH. Since ICH may be immune suppressive, it may aggravate the infection. If you have both ICH and Lyme, then I would think a coordinated approach would be most likely break that cycle. Other "occult" infections (where I'm using "occult" to distinguish it from bacterial meningitis which I doubt is a problem for PWCs visiting this forum) might provoke ICH, but to my knowledge none are as well documented for this as is Lyme.But even if that case applies to you, it doesn't mean that the first self-perpetuating cycle isn't also operative--you could still have a self-perpetuating venous sinus stenosis.I was suggesting a different scenario. One in which the infection is not contributing to the ICH, but rather the infection is entirely a secondary phenomenon--secondary to the ICH. Sort of like infections that are secondary to untreated diabetes.To get a clearer view on this, my goal is to have a lumbar puncture with enough CSF drained to normalize the pressure. Some of the ICH patients feel fantastic for half a day to several days (before the pressure builds back up). I'd also like to see Dr. Glueck about possible clotting disorders (a cause of ICH via venus sinus thrombosis).> > Would diamox or other similar substances, do the trick?*********I plan on trying a diamox/prilosec combo in a while. I don't know what options you have in France, but there are two papers on PubMed reporting efficacy of marijuana for ICH (apparently the therapeutic mechanism is the same as that for glaucoma, but I'm not sure). I can find those citations if you want.> > What role do you see for GABA (inhibitors?)?******I know virtually nothing about GABA. I was wondering, though, if the inexplicable physical anxiety some of have (not emotional for me; just a physical/muscular tension) is due to sympathetic activation by way of ICH, not to some underlying dysfunction of a neurochemical pathway. I'm wondering, that is, if GABA works for some people by relieving some of the negative consequences of ICH without relieving the ICH itself.> > I get massive, dreadful ICH type headaches on a regular basis*******The conventional approach is to be evaluated for papilledema by a neuroophthalmologist. Despite what many doctors might regurgitate from their textbooks, the absence of papilledema doesn't rule out ICH, but if you have papilledema then this is useful info to have. I read one paper on ICH reporting the continous monitoring of intracranial pressure in an ICH patient. When the pressure would spike (called a pulse wave, or waveform) the patient would feel worsening head pain. The point is, the relationship between spikes in intracranial pressure and head pain has been documented.Matt> > Nelly

[Guest guest]

Wow. That is one righteous citation. I know what I'll be reading

up on this week.

Almost as impressive is how your URL wraps around. What's your

secret?

Matt

>

> Dear Nelly and Matt

> I had my tongue too firmly planted in my cheek when I raised the

issue of GHB. The chickens have come home to roost.

> http://www.ncbi.nlm.nih.gov/sites/entrez?

db=pubmed & list_uids=2089952 & cmd=Retrieve & indexed=google

> Regards

> R

>

>

[Guest guest]

Dear Matt

Flattery gets you everywhere :-)

I'm using Firefox as a browser, it always wraps URLs (as far as I can see) if you paste them from an open window.

You might also look at http://www.emedicine.com/emerg/topic848.htm

and http://www.erowid.org/chemicals/ghb/ghb_patent3.shtml for some interesting background.

Regards

R

[infections] Re: GABA

Wow. That is one righteous citation. I know what I'll be reading up on this week.Almost as impressive is how your URL wraps around. What's your secret?Matt>> Dear Nelly and Matt> I had my tongue too firmly planted in my cheek when I raised the issue of GHB. The chickens have come home to roost.> http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed & list_uids=2089952 & cmd=Retrieve & indexed=google> Regards> R> >

[Guest guest]

Mold is definitely a causative factor in my headaches, but it does not cause blood pressure spikes for me as my bp is always low. penny pjeanneus <pj7@...> wrote: Matt and all,I have saved a bit of what you posted in order to comment here on my latest experiences with whatever is going on in my head. I have no answers - just sharing experiences. I finally did get the referral to the neuro-opthamologist, so

hopefully soon I will at least have a diagnosis.Matt wrote:This would predict that stenting the stenosis would be therapeutic. Yet the evidence on this is inconsistent. Some reports (on PubMed and on forums) are positive; others not so much. Perhaps the theory is inadequate. Or perhaps the stents only work well for those who have progressed to a chronic, self-perpetuating phase whereas they don't work so well for patients still suffering from the instigating factor (s).****I saw a chiropractor Friday. He did some gentle pressure-like stretching of the back of my neck and also some massaging of the area just above both ears. His other treatments were what seemed to be Chinese accupressure. I had asked him if there was something he could do to improve flow of spinal fluid - assuming that was even what was wrong with me. He said he could. I must say I had the best day Friday I have had in 14 months.

Saturday and today are better but not as good as Friday. I will post more after my Tuesday appointment.Matt wrote: In cases where ICH has not been present for years and where the instigating factor is no longer present, I think your hope of breaking the cycle may be valid. But the stenosis (the narrowing of the vein) probably leads in time to a permanent loss of the vessel's integrity.*****I am hoping that there might still be some mechanical way to keep the flow open without a stent.Matt wrote:> But you have a different cycle in mind, I think. A handful of > papers on PubMed report that Lyme can provoke ICH. Since ICH may be > immune suppressive, it may aggravate the infection. If you have > both ICH and Lyme, then I would think a coordinated approach would > be most likely break that cycle. Other "occult" infections (where > I'm using "occult" to distinguish it from

bacterial meningitis which > I doubt is a problem for PWCs visiting this forum) might provoke > ICH, but to my knowledge none are as well documented for this as is > Lyme.*****Several of the Lyme doctors replied to me on this that indeed Lyme can precipitate ICH. I just came across one interesting lead on borrelia being intracellular - never mind the L forms and cyst forms -it's the stuff inside the cells that will kill you. So anyway, someone suggested that the antivirals might be working to kill intracellular borrelia. (Please excuse if I posted this earlier - brain is fried.)Matt wrote: I plan on trying a diamox/prilosec combo in a while. >*****How does Prolosec help? I would be pretty creeped to take it since it might reduce stomach acid and increase potential infection, but I could be confused.Matt wrote:I know virtually nothing about GABA. I was wondering, though,

> if the inexplicable physical anxiety some of have (not emotional for > me; just a physical/muscular tension) is due to sympathetic > activation by way of ICH, not to some underlying dysfunction of a > neurochemical pathway. I'm wondering, that is, if GABA works for > some people by relieving some of the negative consequences of ICH > without relieving the ICH itself.******I just bought some GABA but haven't had a clear picture that it was worth taking yet - partly due to brain fog. At the chiropractor's Friday he did this test where I had to focus my eyes to look left and then up to the left. I FREAKED OUT. I felt like I was having an anxiety attack. There is definitely some link between the vision, the head pressure, and muscle tension/anxiety that feels like a mild seizure. IT IS NOT A GOOD FEELING, and I get this throughout the night waking me up.Matt wrote:Despite what

many doctors might regurgitate from their textbooks, the absence of papilledema doesn't rule out ICH, but if you have papilledema then this is useful info to have.*****I don't have papilledema, but I now have one dilated pupil and blurred vision in that eye. Something is gradually, over time, being damaged.Matt wrote:I read one paper on ICH reporting the continous monitoring > of intracranial pressure in an ICH patient. When the pressure would > spike (called a pulse wave, or waveform) the patient would feel > worsening head pain. The point is, the relationship between spikes > in intracranial pressure and head pain has been documented.********I get these spikes of horrible headache. They seem related to the longer I am up. I am better in the morning. If I have some stress I get much worse. Also, moldy buildings make me worse, but this may be because the toxic mold raises my blood

pressure extremely high. Then standing for awhile drops my blood pressure. These ups and downs could be contributing to the head pain.a Carnes

[Guest guest]

Matt,

Are you concerned that minocycline set off your ICH and now it won't

stop? Do you have any research that suggests that ICH caused by

minocycline continues AFTER the mino is stopped? I haven't seen any.

You pretty much can't read any article on ICH that does not mention

ICH as caused by Lyme - this is in the Merck Manual, not just LLMDs.

Now if one stayed on mino for a long time - yes, I would suspect

constant head pressure would not be a herx.

Don't get me started on quinolones. You know what I am going to say!

a Carnes

> >

>

> >

> > *****Several of the Lyme doctors replied to me on this that

indeed

> > Lyme can precipitate ICH.

>

>

>

> One problem with LLMDs and Lyme activism is that they occasionally

> cite the ability of Lyme to promote ICH, but the insights stop

> there. They rarely discuss the ability of antibiotics to provoke

or

> aggravate ICH, instead dogmatically promoting adverse events as

> herx. No question that herx can happen. But that interpretation

is

> promoted virtually to the exclusion of other interpretations. It

> wouldn't be so bad if Lyme activists would say that the ability of

> antibiotics to provoke/aggravate ICH is a consequence of die-off

> (which it may be in some cases) but they rarely even mention the

> relationship at all. Cipro provoked a two and a half day nightmare

> that left me estimating, every second, the length of time I could

> endure it before living was no longer rational. I interpreted this

> as die-off. Thankfully Penny had hammered the idea of ICH enough

> that eventually I realized what had happened, and didn't attempt to

> reproduce that effect (save for a pulse a few weeks later).

>

> I had posted on another forum about this issue. I gave a URL to an

> illustrative thread wherein " Lyme " patients discussed their " herx "

> and three different members described clear manifestations of ICH

> (provoked by antibiotics) with not one word about ICH. Zero

> insights.

>

> This has got to change.

>

> Here is that post, though it looks like the Lyme thread I had cited

> has expired (or the site is temporarily down). Still, I quoted the

> important parts:

>

> http://tinyurl.com/3axayz

>

>

> >

> > Matt wrote:

> > I plan on trying a diamox/prilosec combo in a while. >

> >

> > *****How does Prolosec help? I would be pretty creeped to take it

> > since it might reduce stomach acid and increase potential

> infection,

> > but I could be confused.

>

>

> I talked about prilosec (omeprazole) before:

>

> http://tinyurl.com/2rvcx2

>

> See the two citations reporting the ability of prilosec to reduce

> production of CSF at the choriod plexus. That's what diamox does.

> Diamox is unpleasant to take. I'm hoping that adding prilosec will

> allow me to get more relief with lower doses of diamox. One of the

> common side effects of diamox, which I experienced, is increased

> stomach acid. Prilosec is occasionally prescribed to ICH patients

> for this reason alone (with no apparent awareness of the

possibility

> that the prilosec may help the ICH itself). So the idea here is

> that the combo will have a combined therapeutic effect for ICH,

> while countering each other's opposing effects on stomach acid.

>

>

> Matt

>

[Guest guest]

Penny, you are fortunate. I have possibly three or more doctor's

buildings here in Las Vegas where my blood pressure goes sky high and

I develop anxiety attacks. I am not bothered by these doctors. It is

the building contamination. Otherwise my BP is normal.

My ongoing one year headache is not related to mold. I have had mold

reactions for several years with absolutely no headache of any sort.

One of the curiousities of my case is that I virtually never had a

headache in my life except for the first few months I had flu-like

onset of cfs. This cleared with antibiotics in the next year. Again,

my current situation does not seem to be related. I could be wrong.

a

>

> Mold is definitely a causative factor in my headaches, but it does

not cause blood pressure spikes for me as my bp is always low.

>

> penny

>

[Guest guest]

>

> Matt,

> Are you concerned that minocycline set off your ICH and now it

won't

> stop?

I tried 3 or 4 weeks of mino at about 150 mg to 200 mg per day

several years ago. It just gave me the usual nausea and dizzyness.

It didn't aggravate my preexisting ICH-like symptoms. My disease

pre-dates my use of mino by about 20 years. Head trauma is the most

plausible explanation in my case, but I'm not loyal to that

interpretation.

Do you have any research that suggests that ICH caused by

> minocycline continues AFTER the mino is stopped? I haven't seen

any.

>

The MSN website is a pain because it's not searchable, but here's a

recent thread with posts by patients saying that mino precipitated

their ICH which persisted after withdrawal of the mino:

http://groups.msn.com/pseudotumorcerebri/general.msnw?

action=get_message & mview=0 & ID_Message=62087 & LastModified=467562503156

0758614

This is a common theme in the ICH forums. You should spend some

time reading them.

It may be that the other cofactors are needed to make persistence

happen; or not.

You may want to contact Dawn Irons. She is a Lyme activist who

developed chronic ICH after using doxycycline to treat Lyme:

ptc-support-group/message/87262

http://www.publichealthalert.org/March%2007%20PHA.pdf

> You pretty much can't read any article on ICH that does not

mention

> ICH as caused by Lyme - this is in the Merck Manual, not just

LLMDs.

>

I'm aware that the ICH literature repeatedly lists Lyme as a cause.

I've made that point ad nauseum. I said that the Lyme literature

and commentary rarely reciprocate. It's not the ICH folks who are

dropping the ball. It's the Lyme folks. Did you even read the post

I cited about the three " Lyme " patients and their " herxing " ? Three

separate " Lyme " patients reported antibiotic-induced ICH symptoms,

all in a single thread. They reported headache, pulsatile tinnitus

and blurry vision. Not one word of ICH in the whole thread. Do you

believe that Lyme activism is doing a remotely adequate job in

educating patients to recognize ICH symptoms? It happens

occasionally. Dawn is doing her best.

Matt

[Guest guest]

>

> Matt,

Do you have any research that suggests that ICH caused by

> minocycline continues AFTER the mino is stopped? I haven't seen any.

" Although there is little information on the natural course of

tetracycline induced PTC, the present cases demonstrate that drug

withdrawal is curative only in some patients "

http://tinyurl.com/2skm8q

Matt

[Guest guest]

a, When I was trying to do the MP, the minocycline just about killed me and all I got was "herx, herx, herx"...and..."cut down on the mino, increase the Benicar". I was already on 160mg of benicar a day, and down to almost no mino, and it didn't help at all. It was a terrible reaction. Terrible headaches, vomiting, photosensitivity. That was an extremely scary experience and it was completely ignored by the "experts" at the MP board. I had no choice but to stop the mino and when I recovered enough to research it a bit I found out that pseudotumor cerebri (aka ICH) is a clearly listed side effect of mino and is much more common than people know. To promote that as "herx" is irresponsible and dangerous in my view. When I stopped the mino out of necessity and switched abx at my doc's bidding, I became a bad guy rogue for not doing the protocol

"correctly". When I expressed concern about others who were having severe reactions (one person died, remember?), all my posts were removed and I was banned. Then there was the whole attempt to sue me for "libel". What a crock. Thank goodness Matt believed me. Just as a means to my own peace of mind would have been enough. But I'm glad I went through what I did as it means that Matt might figure something out about all of this and may be able to help himself (and many more of us in the process). Plus, we can warn others that a "herx" is not necessarily a "herx" at all. penny pjeanneus <pj7@...> wrote: Matt,Are you concerned that minocycline set off your ICH and now it won't stop? Do you have any research that suggests that ICH caused by minocycline continues AFTER the mino is stopped? I haven't seen any.You pretty much can't read any article on ICH that does not mention ICH as caused by Lyme - this is in the Merck Manual, not just LLMDs.Now if one stayed on mino for a long time - yes, I would suspect constant head pressure would not be a herx.Don't get me started on quinolones. You know what I am going to say!a Carnes> >> > > > > *****Several of the Lyme doctors replied to me on this that indeed > > Lyme

can precipitate ICH.> > > > One problem with LLMDs and Lyme activism is that they occasionally > cite the ability of Lyme to promote ICH, but the insights stop > there. They rarely discuss the ability of antibiotics to provoke or > aggravate ICH, instead dogmatically promoting adverse events as > herx. No question that herx can happen. But that interpretation is > promoted virtually to the exclusion of other interpretations. It > wouldn't be so bad if Lyme activists would say that the ability of > antibiotics to provoke/aggravate ICH is a consequence of die-off > (which it may be in some cases) but they rarely even mention the > relationship at all. Cipro provoked a two and a half day nightmare > that left me estimating, every second, the length of time I could > endure it before living was no longer rational. I interpreted this > as die-off. Thankfully

Penny had hammered the idea of ICH enough > that eventually I realized what had happened, and didn't attempt to > reproduce that effect (save for a pulse a few weeks later).> > I had posted on another forum about this issue. I gave a URL to an > illustrative thread wherein "Lyme" patients discussed their "herx" > and three different members described clear manifestations of ICH > (provoked by antibiotics) with not one word about ICH. Zero > insights.> > This has got to change.> > Here is that post, though it looks like the Lyme thread I had cited > has expired (or the site is temporarily down). Still, I quoted the > important parts:> > http://tinyurl.com/3axayz> > > > > > Matt wrote: > > I plan on trying a diamox/prilosec combo in a while. >> > > >

*****How does Prolosec help? I would be pretty creeped to take it > > since it might reduce stomach acid and increase potential > infection, > > but I could be confused.> > > I talked about prilosec (omeprazole) before:> > http://tinyurl.com/2rvcx2> > See the two citations reporting the ability of prilosec to reduce > production of CSF at the choriod plexus. That's what diamox does. > Diamox is unpleasant to take. I'm hoping that adding prilosec will > allow me to get more relief with lower doses of diamox. One of the > common side effects of diamox, which I experienced, is increased > stomach acid. Prilosec is occasionally prescribed to ICH patients > for this reason alone (with no apparent awareness of the possibility > that the prilosec may help the ICH itself). So the idea here is > that the

combo will have a combined therapeutic effect for ICH, > while countering each other's opposing effects on stomach acid.> > > Matt>

[Guest guest]

Yes, what worries me about your reasoning with your symptoms is that you always say..."I've had such and such for a long time and it never caused a problem before." The truth of the matter is that the chronic nature of our illness and the coinicinding strenghthening of the microbes slowly breaks down systems until they no longer work properly. It's rarely a fast process with any discernable cause and effect. That's why we get lumped under the 'chronic/autoimmune labels', because they can't make any obvious connections. I'm not saying mold's the cause of your headaches. I really don't know your situation. But I'm realizing that mold is a trigger for mine, despite never having any obvious reactions to mold for years. I do know now that when we had undetected mold under our kitchen floor, I couldn't tolerate being in that room at all. I didn't get headaches, but I'd get so brainfogged

and woozy I'd feel like I was going to fall off my kitchen bar stool. We cleaned up the mold and that doesn't happen in there anymore. I can sit in my kitchen and think clearly. However, I now can smell mold all over the neighborhood, and anytime I do I immediately try to get away from it. If I'm exposed for even a couple of minutes, I definitely start feeling woozy, and now I find it triggering headaches as well. Remember, as Tony says, if you've got a bacterial infection, mold in many cases is a natural antagonist. Think penicillin. If the bacteria which are comfortably ensconced in your head, suddenly feel a threat from something like mold, or some other lightweight antimicrobial, they're going to fire up the defenses. And that firing up could be causing the inflammation which is causing the headaches. pennypjeanneus <pj7@...> wrote: Penny, you are fortunate. I have possibly three or more doctor's buildings here in Las Vegas where my blood pressure goes sky high and I develop anxiety attacks. I am not bothered by these doctors. It is the building contamination. Otherwise my BP is normal.My ongoing one year headache is not related to mold. I have had mold reactions for several years with absolutely no headache of any sort. One of the curiousities of my case is that I virtually never had a headache in my life except for the first few months I had flu-like onset of cfs. This

cleared with antibiotics in the next year. Again, my current situation does not seem to be related. I could be wrong.a>> Mold is definitely a causative factor in my headaches, but it does not cause blood pressure spikes for me as my bp is always low. > > penny>

[Guest guest]

Matt wrote:

> I'm aware that the ICH literature repeatedly lists Lyme as a cause.

> I've made that point ad nauseum. I said that the Lyme literature

> and commentary rarely reciprocate. It's not the ICH folks who are

> dropping the ball. It's the Lyme folks. Did you even read the post

> I cited about the three " Lyme " patients and their " herxing " ? Three

> separate " Lyme " patients reported antibiotic-induced ICH symptoms,

> all in a single thread. They reported headache, pulsatile tinnitus

> and blurry vision. Not one word of ICH in the whole thread. Do you

> believe that Lyme activism is doing a remotely adequate job in

> educating patients to recognize ICH symptoms? It happens

> occasionally. Dawn is doing her best.

Matt,

I have read everything you posted and all the links. I joined the

pseudotumor message board and read quite a bit there. I have not found

cases where minocycline caused PERMANENT damage, but you have, so I

certainly think those cases I just missed those posts. (Tetracyclines

have nothing to do with my headache, but in others it may, who knows,

so I wasn't really looking for that.)

Your concern that the Lyme community is ignoring ICH is funny in a

sarcastic way. I would laugh except it hurts my head. I say this

because everybody in each camp is ignoring everybody else. It's been

this way for awhile. Have you read the stuff about Valcyte? Of course

you have, I just can't remember, right?

I don't plan to join another email list at this point to learn more

about ICH. I did just ask Dawn some questions on another list we are

both on. I plan to continue being treated by a chiropractor - the

first relief I have had in over one year. I also plan to see a neuro-

opthamologist to get a valid diagnosis, if one can be had.

Currently I have trouble recalling words. For instance I was trying to

tell my husband about a rabbit cage. I could see the cage, but could

not recall the word for " cage. " So you don't need to ask me if I " even

read " what you posted. I shall try to focus on rabbit cages and cute

furry animals just for today. Tomorrow I get to see the chiropractor.

Last Friday I had no headache for one whole day after his treatment.

In hopes I may come across something that will help you, I will post

how I am doing with the chiropractic treatment asap.

a

[Guest guest]

Penny,

What worries me about my reasoning is that I still have a headache

and inability to reason after a year.

But is mold a trigger to this headache? Probably not. Certainly

tetracyclines are not even in the picture FOR ME at this time.

Inflammation is in the picture. Is this causing swelling of blood

vessels, compression of spinal fluid flow? Is there a mechanical way

to remove one piece of the problem? For instance, if you could

improve blood and spinal fluid flow perhaps that would help the body

to reduce infection and inflammation. For some patients mechanical

issues may be the whole problem. Certainly, in my case, inflammation

is the BIG clue.

Yes, I get your point about the old stuff causing the new stuff. But

maybe removing some of the old stuff also helps one to do better. I

avoid mold as much as possible. My point in sorting through my

current headache is that I have not had increased mold exposure, nor

did I have a major mold exposure at the time of the start of my

headache. Also, the few times we have stayed at a hotel where I could

tell there was mold (or walked through a casino - all mold infested)

the headache does not change.

I wish I had the answers. Thanks to all who have shared ideas with me.

a

>

> Yes, what worries me about your reasoning with your symptoms is

that you always say... " I've had such and such for a long time and it

never caused a problem before. "

>

> The truth of the matter is that the chronic nature of our illness

and the coinicinding strenghthening of the microbes slowly breaks

down systems until they no longer work properly. It's rarely a fast

process with any discernable cause and effect. That's why we get

lumped under the 'chronic/autoimmune labels', because they can't make

any obvious connections.

>

> I'm not saying mold's the cause of your headaches. I really don't

know your situation. But I'm realizing that mold is a trigger for

mine, despite never having any obvious reactions to mold for years. I

do know now that when we had undetected mold under our kitchen floor,

I couldn't tolerate being in that room at all. I didn't get

headaches, but I'd get so brainfogged and woozy I'd feel like I was

going to fall off my kitchen bar stool. We cleaned up the mold and

that doesn't happen in there anymore. I can sit in my kitchen and

think clearly. However, I now can smell mold all over the

neighborhood, and anytime I do I immediately try to get away from it.

If I'm exposed for even a couple of minutes, I definitely start

feeling woozy, and now I find it triggering headaches as well.

>

> Remember, as Tony says, if you've got a bacterial infection, mold

in many cases is a natural antagonist. Think penicillin. If the

bacteria which are comfortably ensconced in your head, suddenly feel

a threat from something like mold, or some other lightweight

antimicrobial, they're going to fire up the defenses. And that firing

up could be causing the inflammation which is causing the headaches.

>

> penny

[Guest guest]

a, neurologists couldn't help my daughter's chronic daily headaches that went on for months. When one told me to take her to a psychiatrist, I got so annoyed I said phooey on all of you and started interviewing chiros. She started going to one daily and her headaches were gone in a week. The vertabrae up near the base of her skull kept going out and he kept putting it back, took her off all dairy, and she got well. penny pjeanneus <pj7@...> wrote: Matt wrote: > I'm aware that the ICH literature repeatedly lists Lyme as a cause. > I've made that point ad nauseum. I said that the Lyme literature > and commentary rarely reciprocate. It's not the ICH folks who are > dropping the ball. It's the Lyme folks. Did you even read the post > I cited about the three "Lyme" patients and their "herxing"? Three > separate "Lyme" patients reported antibiotic-induced ICH symptoms, > all in a single thread. They reported headache, pulsatile tinnitus > and blurry vision. Not one word of ICH in the whole thread. Do you > believe that Lyme activism is doing a remotely adequate job in > educating patients to recognize ICH symptoms? It happens > occasionally. Dawn is doing her best.Matt,I have read everything you posted and all the links. I joined the pseudotumor message board and read quite a bit there. I have not found cases where

minocycline caused PERMANENT damage, but you have, so I certainly think those cases I just missed those posts. (Tetracyclines have nothing to do with my headache, but in others it may, who knows, so I wasn't really looking for that.)Your concern that the Lyme community is ignoring ICH is funny in a sarcastic way. I would laugh except it hurts my head. I say this because everybody in each camp is ignoring everybody else. It's been this way for awhile. Have you read the stuff about Valcyte? Of course you have, I just can't remember, right? I don't plan to join another email list at this point to learn more about ICH. I did just ask Dawn some questions on another list we are both on. I plan to continue being treated by a chiropractor - the first relief I have had in over one year. I also plan to see a neuro-opthamologist to get a valid diagnosis, if one can be had. Currently I have trouble recalling words.

For instance I was trying to tell my husband about a rabbit cage. I could see the cage, but could not recall the word for "cage." So you don't need to ask me if I "even read" what you posted. I shall try to focus on rabbit cages and cute furry animals just for today. Tomorrow I get to see the chiropractor. Last Friday I had no headache for one whole day after his treatment.In hopes I may come across something that will help you, I will post how I am doing with the chiropractic treatment asap.a