Intracranial hypertension and hormons (male/female)

pattismith

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Several articles already noticed similarities between IH and CFS/ME and Fibro.

Hormons play a role in modulating brain liquid production and draining, probably via ion channels activity.

I got myself IH when I was low in fT3, then now I got it from a testosterone supplementation trial.

It was shown that IH is much more prevalent in women, and is associated with different hormonal imbalances:

hypothyroidism
hyperthyroidism
hypogonadism (men)
hyperandrogenism (women)
Glucocorticoids excess or insufficiency (cortisol)


I post again a quote from another thread:

My researches convinced me that this headache/balloon is related to idiopathic intracranial hypertension. (I got two times pulsed tinnitus, which is typical of IIH)

This condition has been described in hypothyroidism, but also associated with testosterone deficiency in men.

Interestingly , it was also described in a case of a woman taking testosterone for transgender transformation:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5706971/
this study just released points an androgen connection as well (in obese women):

A unique androgen excess signature in idiopathic intracranial hypertension is linked to cerebrospinal fluid dynamics
feb 2019

abstract

Idiopathic intracranial hypertension (IIH) is a condition of unknown etiology, characterized by elevated intracranial pressure frequently manifesting with chronic headaches and visual loss. Similar to polycystic ovary syndrome (PCOS), IIH predominantly affects obese women of reproductive age. In this study, we comprehensively examined the systemic and cerebrospinal fluid (CSF) androgen metabolome in women with IIH in comparison with sex-, BMI-, and age-matched control groups with either simple obesity or PCOS (i.e., obesity and androgen excess). Women with IIH showed a pattern of androgen excess distinct to that observed in PCOS and simple obesity, with increased serum testosterone and increased CSF testosterone and androstenedione.

Human choroid plexus expressed the androgen receptor, alongside the androgen-activating enzyme aldoketoreductase type 1C3. We show that in a rat choroid plexus cell line, testosterone significantly enhanced the activity of Na+/K+-ATPase, a surrogate of CSF secretion.

We demonstrate that IIH patients have a unique signature of androgen excess and provide evidence that androgens can modulate CSF secretion via the choroid plexus. These findings implicate androgen excess as a potential causal driver and therapeutic target in IIH.
 
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Can you experience IH without vision loss? You were mentioning your IH being associated to low t3 in my post about thyroid hormones and I am wondering if it is something I could also be experiencing. I have a fairly constant, very dull headache most of the time. No vision loss, but occasionally my vision feels it gets kind of foggy almost (its a hard sensation for me to describe). I had never heard IH until you brought it up! So curious to learn more
 

pattismith

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Can you experience IH without vision loss? You were mentioning your IH being associated to low t3 in my post about thyroid hormones and I am wondering if it is something I could also be experiencing. I have a fairly constant, very dull headache most of the time. No vision loss, but occasionally my vision feels it gets kind of foggy almost (its a hard sensation for me to describe). I had never heard IH until you brought it up! So curious to learn more
Yes you can have IH without vision loss. Neurologists often noticed that while solving sight problems with the drug Diamox, the headache often remains, even with normalization of the pressure measurement.

Most neurologists agree that the headache can exist as a single IH sign, without vision loss, and that there can be false negative given by the pressure measurement in that case.

If you have IH, you will probably experience tinnitus and some variation in the intensity in your head pressure.

If you have the chance to have a measurement by your neurologist, it is important to do it when the head pressure sensation is strong. I read reported cases where they could only find the abnormal measure when the head pressure sensation was maximale.

If you have IH, you will notice that drinking a strong coffee doesn't help your headache, on contrary it worsens it. You also probably experience frequent tinnitus if you have this headache for years.

In my case, I suffer from this kind of headache for 25 or 30 years, and I only identified IH 18 months ago.

I had a problem with my gut at that time, following a course of antibiotics. Nothing was helping with my gut, so I had to take Metronidazole, and I got a side effect that is not common with this drug: Pulsatile Tinnitus, with the beat stuck to my heart beat (together with head pressure)
So I did some researches, and found it is typical of IH.
I tryed Diamox, the typical drug for IH) and found some improvement.

My fT3 was low, so I thought at that time that it could be the underlying problem, and I found complete relief from taking T3.
Now I have too much testosterone (from a supplementation trial), and my IH is back (several cases of women changing their gender have experienced the same problem and can be found in the scientific papers).

I don't think my IH is just a result of some hormonal imbalance, I think some brain inflammation is probably the cause, which makes my brain more sensitive to hormonal variations.

@sb4 , I have no idea, good question!

Edit: I want to make a precision that most neurologist won't investigate IH on a woman that is not obese, as obesity is an important risk factor. So if like me, you are slender, the chance is tiny!
 

ScottTriGuy

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Curiouser and curiouser...

Last night I watched the beginning of this IH presentation (before falling asleep) - Venous Stenting in Intracranial Hypertension - Dr. Kenneth Liu:

I can't remember where I got the link from, maybe from you folks in another thread? Or maybe Jen Brea on FB?

Any way, Dr Liu showed a (MRI?) image of a brain and pointed out that the patient had a flattened pituitary caused by IH.

My pituitary is almost flattened (with 2mm cyst the endocrinologist says is nothing to worry about and has nothing to do with my ME symptoms...harrumph, like he knows about ME).

I have hypothyroid symptoms and high testosterone (almost above normal) and tinnitus (non-pulsating) and back of my head pressure headaches.

So from your comments above, I wonder if my (presumed) IH is squishing my pituitary causing low thyroid and high testosterone, and the high testosterone is causing more IH.

Does that sound feasible?

(Aside - I should get access to my CCI MRI in the next few days, that may shed light.)
 

Dakota15

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Piggybacking on this thread but I saw that Dr. Kenneth Liu recently left Penn State Hershey Neurosurgery. Does anyone know where he is planning on practicing next (if any of his former patients are on this forum)?