Re: Anyone used an antiviral?

[Guest guest]

What happened with the beta-lactam? Did it stop relieving your

headache?

>

> I had a long talk with my doctor yesterday. We considered three

choices:

>

> 1. Try Greenstone's Zithromax for a few weeks.

>

> 2. Try Diamox in case I have developed normal pressure

hydrocephalus.

>

> 3. Run further tests to diagnose nph

>

> 4. Put me on valtrex or valcyte and run tests for viruses - she

doesn't know

> where to order these.

>

> We decided to do Zithromax and Valtrex at the same time, and she

ordered a

> test for EBV titres until she can find where to test for HHV6a etc.

>

> Any thoughts??? I can barely think with ongoing brain pressure - so

any

> ideas would be appreciated.

>

> a Carnes

>

[Guest guest]

a

You reported an opening pressure awhile ago that was something like

220. If I recall correctly, your doc told you this was just a bit

over the upper limit but that this didn't qualify as intracranial

hypertension. Did you ever read the literature, or did you take

your doc's word on this? I've read some of the literature and think

it is unlikely that it is a coincidence that you had an opening

pressure measured (presumably motivated by clinical suspicion) and

it was higher than it is for the large majority of healthy people.

CSF pressure varies over an hour time scale due to " pulse waves "

or " wave forms " . A " spot " measurement is not reliable, but is

nonetheless relied on clinically (unfortunately). Your average CSF

pressure is unlikely to be 220 (or whatever it was reported as).

The real average is probably lower or higher.

Instead you're suggesting normal pressure hydrocephalus. If memory

serves this is seen by MRI as enlarged ventricles in the presence of

normal opening pressure. Have you had some sort of diagnostics for

hydrocephalus? Why do you close your post by referring to " brain

pressure " when you start the post suggesting you have " normal

pressure " ? Do you believe that your CSF pressure is normal, or

elevated?

You're saying that you can " barely think " . Intracranial pressure

compromises blood flow to the brain. Patients complain not only of

headache (indeed, some don't actually complain of that) but also

fatigue and brainfog as well. Some authors conceptualize this in

terms of the Monroe-Kellie doctrine which states that an increase in

the volume of one cranial compartment (e.g., CSF volume) must lead

to the decrease in the volume of another cranial compartment (e.g.,

blood volume) because the cranium encloses a fixed volume. Other

authors conceptualize this in terms of cerebral perfusion pressure.

Here the argument is that the blood pressure is needed to overcome

intracranial pressure and when intracranial pressure increases in

the absence of a compensatory increase in blood pressure, then blood

flow to the brain is decreased.

If memory serves, you use CPAP for apnea. I don't know what causes

yours, but my apnea seems to be mixed. I seem to have structural

dispositions to apnea (i.e., mechanical; aka obstructive) but I also

tend to hypoventilate (consistent with central effects). Apnea can

be provoked by intracranial hypertension. This appears to be due to

the effects of pressure on the brainstem with concomitantly reduced

ventilatory drive. CPAP eliminates my apnea-specific symptoms

(nightsweats, nocturia and night-time reflux). But it has little

effect on my fatigue. I think that's because my apnea is secondary

to intracranial hypertension. CPAP relieves the apnea but not the

intracranial hypertension.

I tried Diamox on my own. On day one I tried 100 mg. Day two I

took 250 mg. These are small doses. On the second day, my muscles

were quite prone to cramping. My throat started closing. This

appears to have been a consequence of cramping, not allergy. My

throat narrowed enough to raise the pitch of my voice, making me

sound prepubescent. I wasn't intrested in choking on day 3, so I

abandoned diamox. I might be able to resolve the cramping by

playing around with potassium and sodium intake.

Intracranial hypertension is poorly understood, but the field has

progressed somewhat in the last few years. It's not clear if this

is caused by excessive production of CSF at the choroid plexus or by

insufficient reabsorption of CSF by the blood at the arachnoid

villi. It seems likely that some patients have the first problem,

whereas others have the second problem. My understanding is that

diamox affects only CSF production at the choroid plexus.

Presumably the patients who benefit from diamox have the excessive

CSF production problem. But many patients are not helped by diamox

(see the internet patient forums). Presumably they have a problem

not of excessive CSF production but of insufficient reabsorption at

the arachnoid villi. Dr. Glueck and others argue that some patients

have coagulopathies/thrombophilia and that this is best treated with

blood thinners. Some patients on internet lists report fantastic

results with heparin/coumadin, where diamox did nothing for them.

I'm not sure what the rationale here is, though I think it has

something to do with the deposition of " complexes " on the arachnoid

villi, which clogs them. Daimox won't help that, because high

pressure is needed to push the CSF out of obstructed arachnoid

villi. You can reduce the rate of CSF production using diamox, but

the CSF will simply build up pressure until it is high enough to

force it through the arachnoid villi.

Another important theory that is gaining experimental support

proposes that venous sinus stenosis (narrowing of the venous

drainage in the brain) causes pressure to build up upstream of the

stenosis, where the arachnoid vill are, and this makes it harder for

CSF to flow out of the CNS and into the blood. Diamox is unlikely

to help in that case. But it is still not clear yet to what extent

the stenoses that commonly appear in patients is the cause of the

problem, or a consequence.

I haven't been diagnosed with intracranial hypertension. I think

there are numerous pitfalls, and I haven't yet formulated a plan of

action. Many people who suffer intracranial hypertension feel great

relief for a few days when they have some CSF drained. I would love

to try this. This would give me information that is at least as

important as the opening pressure reading itself. Having a high

pressure doesn't guarantee that reducing the pressure will resolve

all the symptoms (the pressure could itself be secondary to some

other fatigue-provoking process, e.g., Lyme disease, though I also

believe that some people being treated for Lyme disease actually

have intracranial pressure in the absence of Lyme.). So I wouldn't

want to opt, say, for a shunt without first knowing if normal

pressure will relieve my fatigue. This is why I think it is so

critical to have some CSF drained by lumbar puncture and see how

that makes me feel.

There are many pitfalls here.

1) Docs don't usually drain CSF unless the pressure is particularly

high (arbitrarily high, I would say). I'd have to find one willing

to do this.

2) Docs sometimes insist on overdraining. That's because some

patients are treated this way over extended periods--with serial

lumbar punctures. By overdraining, the next LP can be delayed. But

that would defeat the purpose of CSF drainage for me, because I'm

not interested in experiencing the inevitable, and vicious, low-

pressure headache. That could make it difficult for me to assess

the extent to which a *normalization* of pressure would relieve my

fatigue.

3) Draining CSF can cause cerebellar herniations (Chiari

malformations). Patients occasionally report this on the

pseudotumor cerebri forums. Someone reported a similar episode on

this forum. I would want to have a trial drainage of CSF only if

the doc agreed to do it slowly enough that the CSF would have plenty

of time to make it through my foramen magnum without jamming my

cerebellum into the hole and causing a herniation (which is easily,

and commonly denied by docs. They can just say that the problems

were pre-existing or that you're malingering. This happens and you

are defenseless against this malpractice).

Would your doc agree to do an LP this way (i.e., drain even if the

CSF pressure is not sky high, without overdraining, and doing it

slowly)? I am asking, that is, if the doc you went to would do this

*for me*? It seems like such a reasonable request, and the

procedure could be so informative.

Matt

>

> I had a long talk with my doctor yesterday. We considered three

choices:

>

> 1. Try Greenstone's Zithromax for a few weeks.

>

> 2. Try Diamox in case I have developed normal pressure

hydrocephalus.

>

> 3. Run further tests to diagnose nph

>

> 4. Put me on valtrex or valcyte and run tests for viruses - she

doesn't know

> where to order these.

>

> We decided to do Zithromax and Valtrex at the same time, and she

ordered a

> test for EBV titres until she can find where to test for HHV6a etc.

>

> Any thoughts??? I can barely think with ongoing brain pressure -

so any

> ideas would be appreciated.

>

> a Carnes

>

[Guest guest]

asked:

What happened with the beta-lactam? Did it stop relieving your headache?

PJ replies:

In a word, yes. And it only helped for a few days. I was back on both Diflucan and penicillin at the same time, as Penny suggested. It did absolutely nothing. I figured it was time to go back to the drawing board.

[Guest guest]

Matt,

Your comments were BRILLIANT. Duh, I am slow but I get there. Funny thing is, my doc made the same point about my pressure being 210 - on the high side, but I didn't get the point that day. I guess the headache and brain fog were too bad.

I think this is what you are saying. If the spinal fluid flowed out at 210 when the high end of normal is 180, I probably don't have some ventricular block which is keeping the fluid trapped in my brain. Thus the head pressure is something else - perhaps low grade infection which is raising my pressure just slightly above normal.

Also, the fact that headache isn't always involved in NPH.

I had a completely normal MRI and CT scan of brain. No tests for bacteria or fungi were positive. I goofed and got a PCR from IgeneX on the spinal fluid. I understand now this should have been a western blot??? Anyway, it was negative.

My spinal fluid flowed out VERY SLOWLY during the test, and they actually did not get enough to do the MS testing. This MAY have indicated that the fluid was blocked, but, again, the fact that it was 210 at first doesn't fit. I had no headache after the lumbar puncture, but neither was a better by that evening, certainly not the next day. Whatever amount of fluid they drew out that day certainly did not temporarily relieve the head pressure I have.

I have a sense that my brain is swollen. I have diagnosed vestibular nerve damage. Yes, I think my brain pressure is abnormally high but maybe only borderline high.

My doctor will order more tests, but we decided to try the Greenstone zithromax and the Valtrex for now. Maybe I should try aspirin to increase blood flow.

I used to have NMH and probably still do. My sleep apnea is probably both like yours - don't know.

Keep it Simple because I am Stupid, but please keep posting. You are helping me think through this mess.

a

aYou reported an opening pressure awhile ago that was something like 220. If I recall correctly, your doc told you this was just a bit over the upper limit but that this didn't qualify as intracranial hypertension. Did you ever read the literature, or did you take your doc's word on this? I've read some of the literature and think it is unlikely that it is a coincidence that you had an opening pressure measured (presumably motivated by clinical suspicion) and it was higher than it is for the large majority of healthy people. CSF pressure varies over an hour time scale due to "pulse waves" or "wave forms". A "spot" measurement is not reliable, but is nonetheless relied on clinically (unfortunately). Your average CSF pressure is unlikely to be 220 (or whatever it was reported as). The real average is probably lower or higher.Instead you're suggesting normal pressure hydrocephalus. If memory serves this is seen by MRI as enlarged ventricles in the presence of normal opening pressure. Have you had some sort of diagnostics for hydrocephalus? Why do you close your post by referring to "brain pressure" when you start the post suggesting you have "normal pressure"? Do you believe that your CSF pressure is normal, or elevated?You're saying that you can "barely think". Intracranial pressure compromises blood flow to the brain. Patients complain not only of headache (indeed, some don't actually complain of that) but also fatigue and brainfog as well. Some authors conceptualize this in terms of the Monroe-Kellie doctrine which states that an increase in the volume of one cranial compartment (e.g., CSF volume) must lead to the decrease in the volume of another cranial compartment (e.g., blood volume) because the cranium encloses a fixed volume. Other authors conceptualize this in terms of cerebral perfusion pressure. Here the argument is that the blood pressure is needed to overcome intracranial pressure and when intracranial pressure increases in the absence of a compensatory increase in blood pressure, then blood flow to the brain is decreased.If memory serves, you use CPAP for apnea. I don't know what causes yours, but my apnea seems to be mixed. I seem to have structural dispositions to apnea (i.e., mechanical; aka obstructive) but I also tend to hypoventilate (consistent with central effects). Apnea can be provoked by intracranial hypertension. This appears to be due to the effects of pressure on the brainstem with concomitantly reduced ventilatory drive. CPAP eliminates my apnea-specific symptoms (nightsweats, nocturia and night-time reflux). But it has little effect on my fatigue. I think that's because my apnea is secondary to intracranial hypertension. CPAP relieves the apnea but not the intracranial hypertension.I tried Diamox on my own. On day one I tried 100 mg. Day two I took 250 mg. These are small doses. On the second day, my muscles were quite prone to cramping. My throat started closing. This appears to have been a consequence of cramping, not allergy. My throat narrowed enough to raise the pitch of my voice, making me sound prepubescent. I wasn't intrested in choking on day 3, so I abandoned diamox. I might be able to resolve the cramping by playing around with potassium and sodium intake.Intracranial hypertension is poorly understood, but the field has progressed somewhat in the last few years. It's not clear if this is caused by excessive production of CSF at the choroid plexus or by insufficient reabsorption of CSF by the blood at the arachnoid villi. It seems likely that some patients have the first problem, whereas others have the second problem. My understanding is that diamox affects only CSF production at the choroid plexus. Presumably the patients who benefit from diamox have the excessive CSF production problem. But many patients are not helped by diamox (see the internet patient forums). Presumably they have a problem not of excessive CSF production but of insufficient reabsorption at the arachnoid villi. Dr. Glueck and others argue that some patients have coagulopathies/thrombophilia and that this is best treated with blood thinners. Some patients on internet lists report fantastic results with heparin/coumadin, where diamox did nothing for them. I'm not sure what the rationale here is, though I think it has something to do with the deposition of "complexes" on the arachnoid villi, which clogs them. Daimox won't help that, because high pressure is needed to push the CSF out of obstructed arachnoid villi. You can reduce the rate of CSF production using diamox, but the CSF will simply build up pressure until it is high enough to force it through the arachnoid villi.Another important theory that is gaining experimental support proposes that venous sinus stenosis (narrowing of the venous drainage in the brain) causes pressure to build up upstream of the stenosis, where the arachnoid vill are, and this makes it harder for CSF to flow out of the CNS and into the blood. Diamox is unlikely to help in that case. But it is still not clear yet to what extent the stenoses that commonly appear in patients is the cause of the problem, or a consequence.I haven't been diagnosed with intracranial hypertension. I think there are numerous pitfalls, and I haven't yet formulated a plan of action. Many people who suffer intracranial hypertension feel great relief for a few days when they have some CSF drained. I would love to try this. This would give me information that is at least as important as the opening pressure reading itself. Having a high pressure doesn't guarantee that reducing the pressure will resolve all the symptoms (the pressure could itself be secondary to some other fatigue-provoking process, e.g., Lyme disease, though I also believe that some people being treated for Lyme disease actually have intracranial pressure in the absence of Lyme.). So I wouldn't want to opt, say, for a shunt without first knowing if normal pressure will relieve my fatigue. This is why I think it is so critical to have some CSF drained by lumbar puncture and see how that makes me feel.There are many pitfalls here.1) Docs don't usually drain CSF unless the pressure is particularly high (arbitrarily high, I would say). I'd have to find one willing to do this.2) Docs sometimes insist on overdraining. That's because some patients are treated this way over extended periods--with serial lumbar punctures. By overdraining, the next LP can be delayed. But that would defeat the purpose of CSF drainage for me, because I'm not interested in experiencing the inevitable, and vicious, low-pressure headache. That could make it difficult for me to assess the extent to which a *normalization* of pressure would relieve my fatigue.3) Draining CSF can cause cerebellar herniations (Chiari malformations). Patients occasionally report this on the pseudotumor cerebri forums. Someone reported a similar episode on this forum. I would want to have a trial drainage of CSF only if the doc agreed to do it slowly enough that the CSF would have plenty of time to make it through my foramen magnum without jamming my cerebellum into the hole and causing a herniation (which is easily, and commonly denied by docs. They can just say that the problems were pre-existing or that you're malingering. This happens and you are defenseless against this malpractice).Would your doc agree to do an LP this way (i.e., drain even if the CSF pressure is not sky high, without overdraining, and doing it slowly)? I am asking, that is, if the doc you went to would do this *for me*? It seems like such a reasonable request, and the procedure could be so informative.Matt

[Guest guest]

a

See my comments interspersed below

>

> Matt,

>

> Your comments were BRILLIANT. Duh, I am slow but I get there.

Funny thing

> is, my doc made the same point about my pressure being 210 - on

the high

> side, but I didn't get the point that day. I guess the headache

and brain

> fog were too bad.

>

> I think this is what you are saying. If the spinal fluid flowed

out at 210

> when the high end of normal is 180, I probably don't have some

ventricular

> block which is keeping the fluid trapped in my brain. Thus the

head pressure

> is something else - perhaps low grade infection which is raising

my pressure

> just slightly above normal.

If I'm conceptualizing this right, a ventricular block would lead to

enlarged ventricle(s). The reason I doubt this is because your

scans apparently don't show this. However, I wonder if you do

indeed have blockage to some extent. See below. Low grade

infection may play a role. But it may not. Alternatively, an

infection might have (I'm speculating here) provoked intracranial

hypertension (ICH) that persisted even after the pathogen was

cleared. This could occur, perhaps, in light of the chicken/egg

conundrum that venous sinus stenosis represents. There are some

reports of relief of ICH when the stenosis (narrowing of the vein)

is stented (held open with a a stent). Other reports say that the

stenoses disappear when the ICH is relieved by another (non-

stenting) method. In other words, if both viewpoints are correct,

stenoses cause ICH, and ICH cause stenoses. It is conceivable, I

suppose, that the positive feedback that ICH and stenosis have on

each other could give ICH a life of its own, even after the

precipitating event has passed. I also think that saying that 210

is " slightly above normal " may be misleading depending on what you

mean by " normal " . If by normal you mean " average " (the average

pressure for healthy people) then I wouldn't characterize 210 as

slightly above that. The average is lower than 180. 180 is the

number your doc is saying represents the *upper limit* of what is

considered normal. This might seem like semantics, but it may

influence the attention you decide to devote to this topic.

>

> Also, the fact that headache isn't always involved in NPH.

>

> I had a completely normal MRI and CT scan of brain.

" Normalcy " could depend on who evaluated the MRI and what they were

looking for. I got a copy of my " normal " head MRI and it looks to

me like I have a " partially empty sella " . The sella turcica houses

the pituitary. There's a diaphram in there that separates the

pituitary from the CSF and when the CSF pressure builds up, the

diaphram can compress the pituitary. Mine looks concave. This can

cause hormonal problems. The report says something about my

pituitary being normal (I don't have it handy so I don't remember

the precise wording). But I think the radiologist meant that I

didn't have an *enlarged* pituitary, as with a tumor. I doubt

radiologists would care about a " partially empty sella " insofar as

ICH is considered rare and this is not how ICH is supposed to be

diagnosed anyway. You may find some clues on your MRI if you look

at them yourself. These are the papers I used to help interpret my

MRI:

http://tinyurl.com/2vcydh

http://tinyurl.com/36hvyz

http://tinyurl.com/3dva5e

The last one can be downloaded free of charge. Figure 1, panel C

shows a partially empty sella as ICH compressed the pituitary, and

panel F shows the normally-shaped pituitary in the same patient

after the ICH had been relieved.

That paper also described another critical clue--one you can test in

under 20 seconds from now. Turns out that ICH sometimes causes a

sixth cranial nerve palsy. Hold your finger up to one side of your

face such that the far eye sees the finger just in front of the top

of your nose (where the nose curves into the forehead; the point

here is to maximize the extent to which you look to one side while

still being able to see the finger with both eyes). Watch your

finger for at least 20 seconds. Do you see two images offset a

little bit? Try it with the other side. The palsy can be bilateral

or unilateral. Mine occurs only on the left side. This isn't how

ICH is supposed to be diagnosed and I'm sure many sufferers don't

have the palsy, but if you have it then this is very useful

information.

We have a lot of strange symptoms that may not be especially

upsetting so we tend to ignore them. Two symptoms that I think are

hallmarks of ICH are ones you may want to watch out for as symptoms

you've ignored. One is pulsatile tinnitus. This is not the normal

ringing in the ears. This is a rushing sound in your ear every time

your heart beats. I usually only hear this if I'm laying down and

even then I don't hear it very often. The other symptom is a

worsening of head pain when you sneeze, cough or lean over. I had

thought this was normal. It's not.

No tests for bacteria or

> fungi were positive. I goofed and got a PCR from IgeneX on the

spinal fluid.

> I understand now this should have been a western blot??? Anyway,

it was

> negative.

>

> My spinal fluid flowed out VERY SLOWLY during the test, and they

actually

> did not get enough to do the MS testing. This MAY have indicated

that the

> fluid was blocked, but, again, the fact that it was 210 at first

doesn't

> fit.

Did the doc say the fluid seemed viscous? Probably not, I'm

guessing. That seems unlikely.

But I do have a theory about why your pressure was initially

elevated but flowed slowly and it relates to " pitfall #3 " that I

referred to before. As you know, the use of Chiari malformations as

a diagnosis has a troubled history with fibromyalgia and CFS. I've

read a fair number of full texts dealing with ICH and with Chiari,

and it seems to me that the problem is that the diagnosis has been,

and may continue to be, applied far too liberally, and that this is

made possible because there are elements of Chiari that are valid.

Contrary to popular discussions of Chiari, the literature I've read

repeatedly states that many people with the malformations are

asymptomatic, whereas some people with barely discernable

malformations nonetheless suffer the related symptoms. Imagine

putting two of your fingers (representing cerebellar tonsils) into

the tube of a paper towel roll through which you were pouring

water. Your fingers would impede the flow of water, but the extent

to which this would occur would depend on how far into the tube you

went and how big your fingers are. The water might flow

adequately. Alternatively, imagine putting the palm of your hand

(representing the bottom of someone's cerebellum in the absence of

enlarged, descending tonsils) over the opening. That would shut

down the flow of water rather efficiently. I think the vocabulary

shapes and mis-focuses the way these problems are conceived. Chiari

malformations explicitly refer to structural malformations of the

cerebellum--cerebellar tonsils descending into the foramen magnum.

One consequence of the malformations can be the obstruction of CSF

flow through that hole, and this is a problem. But what do we call

a situation in which flow is obstructed in the absence of overt

structural malformations? We can't really call it Chiari since that

refers to the malformations, not to the obstructed flow they

sometimes cause. To my knowledge there's no name that is given to a

situation in which the foramen magnum is somewhat obstructed in the

absence of descending cerebellar tonsils.

This may seem pedantic, but it may be important to consider if you

enter into related discussions with your doc. It's not that the

nameless obstruction can't be diagnosed. It can. This is done with

a CINE MR. This can measure CSF flow, including through the foramen

magnum.

Simply put, I think it is plausible that you have intracranial

hypertension that pushes your brain down onto the foramen magnum and

thereby obstructs somewhat the flow of CSF through that hole even in

the absence of Chiari malformations. There's enough room through

the foramen magnum that CSF can flow through, but only slowly. So

the pressure in your cranium may be represented in your spinal

column, and therefore is measurable at first, but as soon as a

little CSF is drained the pressure in the spinal column falls.

Given the putative obstruction at the foramen magnum the pressurized

CSF in your head can't flow through fast enough to maintain the

pressure in your spinal column. In other words, you'd have an

elevated opening pressure, but the pressure in your spinal column

would rapidly reach zero and very little CSF would flow out of the

needle. But your head would still be pressurized.

This is not fanciful. This paper:

http://tinyurl.com/286nfm

is the most sober treatment of this issue that I've come across.

You probably don't have easy access to the full text of this paper,

or the others I'll cite, and it may not be worth the time and

expense for you to get them, but I think it's important for me to

refer to specific data. Figure 5 shows an MRI of a 14 year old girl

shortly after having a lumbar puncture, and another one 5 weeks

later. She had meningitis and was given an LP. She became

unconscious shortly thereafter. The MRI taken at this time point

shows grotesque occlusion of the foramen magnum due to the downward

movement of her brain. The follow-up MRI was taken after she had

recovered, and serves as a comparison that reveals just how

grotesque the initial occlusion was. The point here is that when

the CSF was taken from her spinal column, this reduced the pressure

in her spinal column without relieving the pressure in her head.

The pressure difference between her head and her spine ended up

pushing her brain downward, thereby clogging the foramen magnum.

I suspect that this could be somewhat of a self-perpetuating

situation in that once the foramen magnum is blocked the pressure in

the head builds up even more. This pushes the brain downwards even

harder. And there ought to be gradations in the severity of this

type of process.

To cite another example of this problem, see

http://tinyurl.com/224q82

which says " VP shunting also avoids the risk of iatrogenic Chiari

malformation. " VP refers to ventriculoperitoneal shunting which

involves draining CSF from the brain into the abdomen and is being

contrasted here with LP shunting (lumboperitoneal) where the CSF is

drained from the spine. The reason LP shunting, but not VP

shunting, can cause iatrogenic chiari is, again, because of the

pressure difference that CSF removal from the spine creates across

the foramen magnum.

I had no headache after the lumbar puncture, but neither was a

better

> by that evening, certainly not the next day. Whatever amount of

fluid they

> drew out that day certainly did not temporarily relieve the head

pressure I

> have.

Doesn't sound like they got much out. I think that when CSF is

drained for therapeutic benefit, they take a lot more than when they

drain just enough to send to the labs.

>

> I have a sense that my brain is swollen. I have diagnosed

vestibular nerve

> damage. Yes, I think my brain pressure is abnormally high but

maybe only

> borderline high.

Alternatively, your intracranial pressure may be sky high, but

because of a putative block at the foramen magnum that pressure is

not transmitted efficiently to the spinal column and therefore would

not be reflected in the opening pressure of an LP.

I think you would need a CINE MR to diagnose this.

>

> My doctor will order more tests, but we decided to try the

Greenstone

> zithromax and the Valtrex for now. Maybe I should try aspirin to

increase

> blood flow.

I've just started low-dose aspirin, since I don't have a doc that

will try real anticoagulants. I'd like to try coumadin or heparin,

but perhaps I'll get lucky with the aspirin.

Just to clarify, when anticoagulants improve blood flow in patients,

they probably do this not by directly thinning the blood, but rather

indirectly by relieving the ICH which is compressing the blood

vessels. Here are two papers that discuss the role that blood may

play:

http://tinyurl.com/2jgpyd

http://tinyurl.com/3y6ru9

Here is a thread with posts by ICH sufferers who found relief with

anticoagulants:

http://tinyurl.com/2ub6ah

Keep in mind, though, that there is fairly wide consensus that ICH

has more than one cause. One therapy won't work for everyone.

>

> I used to have NMH and probably still do. My sleep apnea is

probably both

> like yours - don't know.

>

> Keep it Simple because I am Stupid, but please keep posting. You

are helping

> me think through this mess.

>

> a

>

>

[Guest guest]

Funny you'd bring this up now. I think ICH is a factor for many of us. Just last week, I was experiencing a daily headache (along with a renewed sinus infection which I actually think came about as a result of wearing ear plugs at night for a week). Then a few days ago, a clear thin liquid started running out of my nose. At first I was happy because it was actually coming from my nose and because it was clear (my mucous always goes down my throat and it's always thick). So I was thinking that the sinus infection (at least the overt one) was being resolved and perhaps my sinuses were working properly. But then it occurred to me that Clooney also had constant headaches and clear fluid dripping from his nose before they discovered it was a spinal fluid leak that was causing his problems. For me, right after the nose running (happened two times

like this in two days) the headaches were releived. I then wondered if perhaps the leakage had relieved some of the ICH and the headaches in turn. One person who ran a CT scan of my brain said she was worried that I might have a sinus thrombotic clot that would explain my migraines and a lot of other symptoms. Basically means I could have a stroke at any time. This would mean blood thinners would probably be the best course of action. I couldn't even deal with her hypotheses at that time, and to be honest, it's one of those fuzzy areas where finding a doctor to investigate further and treat was more than I could manage. But I still think there may be something to it, especially considering all of the issues we pwc face that seem to fit. Matt, since you're looking at circulatory/coagulatory, CSF and nerve issues being related here, have you thought about a sinus

thrombotic clot as a potential cause of any of your symptoms? a? penny phagelod <mpalmer@...> wrote: aSee my comments interspersed below>> Matt,> > Your comments were BRILLIANT. Duh, I am slow but I get there. Funny

thing> is, my doc made the same point about my pressure being 210 - on the high> side, but I didn't get the point that day. I guess the headache and brain> fog were too bad. > > I think this is what you are saying. If the spinal fluid flowed out at 210> when the high end of normal is 180, I probably don't have some ventricular> block which is keeping the fluid trapped in my brain. Thus the head pressure> is something else - perhaps low grade infection which is raising my pressure> just slightly above normal.If I'm conceptualizing this right, a ventricular block would lead to enlarged ventricle(s). The reason I doubt this is because your scans apparently don't show this. However, I wonder if you do indeed have blockage to some extent. See below. Low grade infection may play a role. But it may not. Alternatively, an infection might have (I'm speculating

here) provoked intracranial hypertension (ICH) that persisted even after the pathogen was cleared. This could occur, perhaps, in light of the chicken/egg conundrum that venous sinus stenosis represents. There are some reports of relief of ICH when the stenosis (narrowing of the vein) is stented (held open with a a stent). Other reports say that the stenoses disappear when the ICH is relieved by another (non-stenting) method. In other words, if both viewpoints are correct, stenoses cause ICH, and ICH cause stenoses. It is conceivable, I suppose, that the positive feedback that ICH and stenosis have on each other could give ICH a life of its own, even after the precipitating event has passed. I also think that saying that 210 is "slightly above normal" may be misleading depending on what you mean by "normal". If by normal you mean "average" (the average pressure for healthy people) then I wouldn't characterize 210 as

slightly above that. The average is lower than 180. 180 is the number your doc is saying represents the *upper limit* of what is considered normal. This might seem like semantics, but it may influence the attention you decide to devote to this topic.> > Also, the fact that headache isn't always involved in NPH. > > I had a completely normal MRI and CT scan of brain."Normalcy" could depend on who evaluated the MRI and what they were looking for. I got a copy of my "normal" head MRI and it looks to me like I have a "partially empty sella". The sella turcica houses the pituitary. There's a diaphram in there that separates the pituitary from the CSF and when the CSF pressure builds up, the diaphram can compress the pituitary. Mine looks concave. This can cause hormonal problems. The report says something about my pituitary being normal (I don't have it handy so I don't remember the precise

wording). But I think the radiologist meant that I didn't have an *enlarged* pituitary, as with a tumor. I doubt radiologists would care about a "partially empty sella" insofar as ICH is considered rare and this is not how ICH is supposed to be diagnosed anyway. You may find some clues on your MRI if you look at them yourself. These are the papers I used to help interpret my MRI:http://tinyurl.com/2vcydhhttp://tinyurl.com/36hvyzhttp://tinyurl.com/3dva5eThe last one can be downloaded free of charge. Figure 1, panel C shows a partially empty sella as ICH compressed the pituitary, and panel F shows the normally-shaped pituitary in the same patient after the ICH had been relieved.That paper also described another critical clue--one you can test in under 20 seconds

from now. Turns out that ICH sometimes causes a sixth cranial nerve palsy. Hold your finger up to one side of your face such that the far eye sees the finger just in front of the top of your nose (where the nose curves into the forehead; the point here is to maximize the extent to which you look to one side while still being able to see the finger with both eyes). Watch your finger for at least 20 seconds. Do you see two images offset a little bit? Try it with the other side. The palsy can be bilateral or unilateral. Mine occurs only on the left side. This isn't how ICH is supposed to be diagnosed and I'm sure many sufferers don't have the palsy, but if you have it then this is very useful information.We have a lot of strange symptoms that may not be especially upsetting so we tend to ignore them. Two symptoms that I think are hallmarks of ICH are ones you may want to watch out for as symptoms you've ignored.

One is pulsatile tinnitus. This is not the normal ringing in the ears. This is a rushing sound in your ear every time your heart beats. I usually only hear this if I'm laying down and even then I don't hear it very often. The other symptom is a worsening of head pain when you sneeze, cough or lean over. I had thought this was normal. It's not.No tests for bacteria or> fungi were positive. I goofed and got a PCR from IgeneX on the spinal fluid.> I understand now this should have been a western blot??? Anyway, it was> negative.> > My spinal fluid flowed out VERY SLOWLY during the test, and they actually> did not get enough to do the MS testing. This MAY have indicated that the> fluid was blocked, but, again, the fact that it was 210 at first doesn't> fit.Did the doc say the fluid seemed viscous? Probably not, I'm guessing. That seems unlikely.But I do

have a theory about why your pressure was initially elevated but flowed slowly and it relates to "pitfall #3" that I referred to before. As you know, the use of Chiari malformations as a diagnosis has a troubled history with fibromyalgia and CFS. I've read a fair number of full texts dealing with ICH and with Chiari, and it seems to me that the problem is that the diagnosis has been, and may continue to be, applied far too liberally, and that this is made possible because there are elements of Chiari that are valid.Contrary to popular discussions of Chiari, the literature I've read repeatedly states that many people with the malformations are asymptomatic, whereas some people with barely discernable malformations nonetheless suffer the related symptoms. Imagine putting two of your fingers (representing cerebellar tonsils) into the tube of a paper towel roll through which you were pouring water. Your fingers would

impede the flow of water, but the extent to which this would occur would depend on how far into the tube you went and how big your fingers are. The water might flow adequately. Alternatively, imagine putting the palm of your hand (representing the bottom of someone's cerebellum in the absence of enlarged, descending tonsils) over the opening. That would shut down the flow of water rather efficiently. I think the vocabulary shapes and mis-focuses the way these problems are conceived. Chiari malformations explicitly refer to structural malformations of the cerebellum--cerebellar tonsils descending into the foramen magnum. One consequence of the malformations can be the obstruction of CSF flow through that hole, and this is a problem. But what do we call a situation in which flow is obstructed in the absence of overt structural malformations? We can't really call it Chiari since that refers to the malformations, not

to the obstructed flow they sometimes cause. To my knowledge there's no name that is given to a situation in which the foramen magnum is somewhat obstructed in the absence of descending cerebellar tonsils.This may seem pedantic, but it may be important to consider if you enter into related discussions with your doc. It's not that the nameless obstruction can't be diagnosed. It can. This is done with a CINE MR. This can measure CSF flow, including through the foramen magnum.Simply put, I think it is plausible that you have intracranial hypertension that pushes your brain down onto the foramen magnum and thereby obstructs somewhat the flow of CSF through that hole even in the absence of Chiari malformations. There's enough room through the foramen magnum that CSF can flow through, but only slowly. So the pressure in your cranium may be represented in your spinal column, and therefore is measurable at first,

but as soon as a little CSF is drained the pressure in the spinal column falls. Given the putative obstruction at the foramen magnum the pressurized CSF in your head can't flow through fast enough to maintain the pressure in your spinal column. In other words, you'd have an elevated opening pressure, but the pressure in your spinal column would rapidly reach zero and very little CSF would flow out of the needle. But your head would still be pressurized.This is not fanciful. This paper:http://tinyurl.com/286nfmis the most sober treatment of this issue that I've come across. You probably don't have easy access to the full text of this paper, or the others I'll cite, and it may not be worth the time and expense for you to get them, but I think it's important for me to refer to specific data. Figure 5 shows an MRI of a 14 year old girl shortly after having a

lumbar puncture, and another one 5 weeks later. She had meningitis and was given an LP. She became unconscious shortly thereafter. The MRI taken at this time point shows grotesque occlusion of the foramen magnum due to the downward movement of her brain. The follow-up MRI was taken after she had recovered, and serves as a comparison that reveals just how grotesque the initial occlusion was. The point here is that when the CSF was taken from her spinal column, this reduced the pressure in her spinal column without relieving the pressure in her head. The pressure difference between her head and her spine ended up pushing her brain downward, thereby clogging the foramen magnum.I suspect that this could be somewhat of a self-perpetuating situation in that once the foramen magnum is blocked the pressure in the head builds up even more. This pushes the brain downwards even harder. And there ought to be gradations in the

severity of this type of process.To cite another example of this problem, seehttp://tinyurl.com/224q82which says "VP shunting also avoids the risk of iatrogenic Chiari malformation." VP refers to ventriculoperitoneal shunting which involves draining CSF from the brain into the abdomen and is being contrasted here with LP shunting (lumboperitoneal) where the CSF is drained from the spine. The reason LP shunting, but not VP shunting, can cause iatrogenic chiari is, again, because of the pressure difference that CSF removal from the spine creates across the foramen magnum.I had no headache after the lumbar puncture, but neither was a better> by that evening, certainly not the next day. Whatever amount of fluid they> drew out that day certainly did not temporarily relieve the head pressure I> have.Doesn't sound like

they got much out. I think that when CSF is drained for therapeutic benefit, they take a lot more than when they drain just enough to send to the labs.> > I have a sense that my brain is swollen. I have diagnosed vestibular nerve> damage. Yes, I think my brain pressure is abnormally high but maybe only> borderline high.Alternatively, your intracranial pressure may be sky high, but because of a putative block at the foramen magnum that pressure is not transmitted efficiently to the spinal column and therefore would not be reflected in the opening pressure of an LP.I think you would need a CINE MR to diagnose this.> > My doctor will order more tests, but we decided to try the Greenstone> zithromax and the Valtrex for now. Maybe I should try aspirin to increase> blood flow.I've just started low-dose aspirin, since I don't have a doc that will try

real anticoagulants. I'd like to try coumadin or heparin, but perhaps I'll get lucky with the aspirin.Just to clarify, when anticoagulants improve blood flow in patients, they probably do this not by directly thinning the blood, but rather indirectly by relieving the ICH which is compressing the blood vessels. Here are two papers that discuss the role that blood may play:http://tinyurl.com/2jgpydhttp://tinyurl.com/3y6ru9Here is a thread with posts by ICH sufferers who found relief with anticoagulants:http://tinyurl.com/2ub6ahKeep in mind, though, that there is fairly wide consensus that ICH has more than one cause. One therapy won't work for everyone.> > I used to have NMH and probably still do. My sleep apnea is probably both> like

yours - don't know.> > Keep it Simple because I am Stupid, but please keep posting. You are helping> me think through this mess.> > a> >

[Guest guest]

Penny

What you're describing is sometimes referred to as " cerebrospinal

fluid rhinorrhea " and is known to happen with ICH:

http://tinyurl.com/225pzo

http://tinyurl.com/28jaen

I've read some posts on the ICH sites about this and I think they

have said that this did relieve their headaches, as you would expect

(Clooney's leak presumably caused low-pressure headaches since I

think the tear in his dura was due to head trauma, not ICH).

Unfortunately, the biggest ICH site doesn't have a search function,

so it's hard to track these first-hand reports down. But it's not

like CSF rhinorrhea is controversial, or in need of first-hand

reporting.

Beyond being a potentially important clue, I'm concerned that a tear

in your meninges that allows CSF to leak out your sinuses may also

be a way for sinus bacteria to enter your CNS.

I meant to mention venous sinus thrombosis in the previous post.

You told me about this a long time ago, along with ICH. I was slow

on the uptake. I think you said that you've tried heparin, but it

didn't help. That might favor an alternate mechanism in your case.

The enthusiasm for venous sinus stenosis (not thrombosis) in the

literature is, I think, fairly recent. Stenosis may not have been

salient in the mind of the person who did the scans for you

previously

Is she someone who would be willing/able to pursue this with me?

I've got absolutely nothing in the pipeline, and few leads. Getting

it all done right seems, as you suggest, almost hopeless.

In my case, my SED rate is always less than 1, but I don't know what

that really tells me in terms of the likelihood that thrombophilia

is the culprit. Dr. Glueck has reported preliminary data indicating

that this is a common cause for men:

http://tinyurl.com/253pct

But I've had some sort of panel done before to test this kind of

thing. I don't have the records, but I apparently tested negative

on all of them. I took two nearly identical, and severe blows to

the head. As a grade schooler I was sliding around on a frozen

stream and slipped back, hitting the back of my had quite hard. I

remained conscious that time, but was out of commission for the rest

of the day. When I was about 14, I caught my heel on top of a

punching bag about 5 1/2 feet above the ground during a flying

kick. This rotated me backwards, slamming the back of my head on to

the concrete. Noone saw this happen, but I regained consciousness

with all four family members standing over me. I'd say I was

unconscious for at least 3 minutes, and as many as 15--it was a

viscious blow. This may be why I had low-grade problems in grade

school and why the nightmare really unfolded in high school.

Mechanistically, I'm leaning towards stenosis (initiated by head

trauma), not thrombosis.

Matt

>

> Funny you'd bring this up now.

>

> I think ICH is a factor for many of us. Just last week, I was

experiencing a daily headache (along with a renewed sinus infection

which I actually think came about as a result of wearing ear plugs

at night for a week).

>

> Then a few days ago, a clear thin liquid started running out of

my nose. At first I was happy because it was actually coming from my

nose and because it was clear (my mucous always goes down my throat

and it's always thick). So I was thinking that the sinus infection

(at least the overt one) was being resolved and perhaps my sinuses

were working properly. But then it occurred to me that

Clooney also had constant headaches and clear fluid dripping from

his nose before they discovered it was a spinal fluid leak that was

causing his problems.

>

> For me, right after the nose running (happened two times like

this in two days) the headaches were releived. I then wondered if

perhaps the leakage had relieved some of the ICH and the headaches

in turn.

>

> One person who ran a CT scan of my brain said she was worried

that I might have a sinus thrombotic clot that would explain my

migraines and a lot of other symptoms. Basically means I could have

a stroke at any time. This would mean blood thinners would probably

be the best course of action. I couldn't even deal with her

hypotheses at that time, and to be honest, it's one of those fuzzy

areas where finding a doctor to investigate further and treat was

more than I could manage. But I still think there may be something

to it, especially considering all of the issues we pwc face that

seem to fit.

>

> Matt, since you're looking at circulatory/coagulatory, CSF and

nerve issues being related here, have you thought about a sinus

thrombotic clot as a potential cause of any of your symptoms? a?

>

> penny

>

>

>

>

[Guest guest]

Unfortunately, this person who was helping me sort of dropped out of sight. She was kind of working with a company that developed a special kind of CT software which gives you more 3 d views of the head, sinuses, jaw etc. (designed for dental implants). She was running some kind of non profit organization and is herself sick, and turned out to be not completely reliable, although she knew her stuff when it came to scans. Although I seriously had to question her judgement when she called me on vacation and just about scared the hell out of me saying I might be prone to stroke based on what she was seeing in my scans and everything I'd told her about my symptoms including migraines, etc. She said she was coming to San Diego to meet with some docs and to meet with me as well, and that's the last I heard of her. I told my doc and he was kind of appalled, and I never really pursued it further. Just couldn't handle the kinds of looks I knew I

was going to get if I went to some doc telling me that I thought I might potentially have a blood clot in my head somewhere. I never did the full heparin protocol either. I only did low levels while I was on abx and it's hard to know what's what when you're doing that. However, I do believe that blood thinning is probably really important for most of us with entrenched infections, and this is based on the protocols of reputable infectious disease docs I know who treat them. When I finally decide to go in and get some debridement of my jaw done, I'm going to be sure to be using a full bloodthinning protocol at the same time. Apparently, you need a much higher INR number (coagulation ratio) than normal if you've got the entrenched infections that many of us do. Otherwise, the drugs will never be able to reach the bugs if the infections are entrenched. Yeah, I

hear you... when I had that clear liquid running out of my nose I was kind of shocked. My nose never runs like that, so at first I thought, wow, maybe that sinus surgery worked. Then it hit me, maybe I'm leaking spinal fluid. Oh well, can't say I'd be extremely surprised. :-) I am going to go get new scans soon and really analyze what's going on in my head. Then I'll try to decide which direction I need to go. I hope you can find someone to help you too. There's got to be someone out there who cares enough to figure this stuff out. penny phagelod <mpalmer@...> wrote: PennyWhat you're describing is sometimes referred to as "cerebrospinal fluid rhinorrhea" and is known to happen with ICH:http://tinyurl.com/225pzohttp://tinyurl.com/28jaenI've read some posts on the ICH sites about this and I think they have said that this did relieve their headaches, as you would expect (Clooney's leak presumably caused low-pressure headaches since I think the tear in his dura was due to head trauma, not ICH). Unfortunately, the biggest ICH site doesn't have a search function, so it's hard to track these first-hand reports down. But it's not like CSF

rhinorrhea is controversial, or in need of first-hand reporting.Beyond being a potentially important clue, I'm concerned that a tear in your meninges that allows CSF to leak out your sinuses may also be a way for sinus bacteria to enter your CNS.I meant to mention venous sinus thrombosis in the previous post. You told me about this a long time ago, along with ICH. I was slow on the uptake. I think you said that you've tried heparin, but it didn't help. That might favor an alternate mechanism in your case. The enthusiasm for venous sinus stenosis (not thrombosis) in the literature is, I think, fairly recent. Stenosis may not have been salient in the mind of the person who did the scans for you previouslyIs she someone who would be willing/able to pursue this with me? I've got absolutely nothing in the pipeline, and few leads. Getting it all done right seems, as you suggest, almost hopeless.In my

case, my SED rate is always less than 1, but I don't know what that really tells me in terms of the likelihood that thrombophilia is the culprit. Dr. Glueck has reported preliminary data indicating that this is a common cause for men:http://tinyurl.com/253pctBut I've had some sort of panel done before to test this kind of thing. I don't have the records, but I apparently tested negative on all of them. I took two nearly identical, and severe blows to the head. As a grade schooler I was sliding around on a frozen stream and slipped back, hitting the back of my had quite hard. I remained conscious that time, but was out of commission for the rest of the day. When I was about 14, I caught my heel on top of a punching bag about 5 1/2 feet above the ground during a flying kick. This rotated me backwards, slamming the back of my head on to the concrete. Noone saw this

happen, but I regained consciousness with all four family members standing over me. I'd say I was unconscious for at least 3 minutes, and as many as 15--it was a viscious blow. This may be why I had low-grade problems in grade school and why the nightmare really unfolded in high school. Mechanistically, I'm leaning towards stenosis (initiated by head trauma), not thrombosis.Matt>> Funny you'd bring this up now.> > I think ICH is a factor for many of us. Just last week, I was experiencing a daily headache (along with a renewed sinus infection which I actually think came about as a result of wearing ear plugs at night for a week). > > Then a few days ago, a clear thin liquid started running out of my nose.

At first I was happy because it was actually coming from my nose and because it was clear (my mucous always goes down my throat and it's always thick). So I was thinking that the sinus infection (at least the overt one) was being resolved and perhaps my sinuses were working properly. But then it occurred to me that Clooney also had constant headaches and clear fluid dripping from his nose before they discovered it was a spinal fluid leak that was causing his problems. > > For me, right after the nose running (happened two times like this in two days) the headaches were releived. I then wondered if perhaps the leakage had relieved some of the ICH and the headaches in turn.> > One person who ran a CT scan of my brain said she was worried that I might have a sinus thrombotic clot that would explain my migraines and a lot of other symptoms. Basically means I could have a stroke at any time.

This would mean blood thinners would probably be the best course of action. I couldn't even deal with her hypotheses at that time, and to be honest, it's one of those fuzzy areas where finding a doctor to investigate further and treat was more than I could manage. But I still think there may be something to it, especially considering all of the issues we pwc face that seem to fit.> > Matt, since you're looking at circulatory/coagulatory, CSF and nerve issues being related here, have you thought about a sinus thrombotic clot as a potential cause of any of your symptoms? a?> > penny> > > >