High intracranial pressure symptoms anyone?

[Diana Driscoll]

I wanted to share with you all how locating and treating high intracranial pressure, was a big first step in the recovery of my kids and I (not a cure by any means, but what a huge help it was!) --

My son and I were triggered by viruses (regular old viruses that others had no trouble with). I couldn't help but notice that many of my symptoms hinted at high intracranial pressure (ICP), such as dizziness, nausea, headache, neck pain, some ringing of the ears, tremor, sensitivity to light, sound, movement, for example. I was diagnosed with POTS (postural orthostatic tachycardia syndrome) and was given Florinef (it increases blood volume) to see if increased blood volume would help. When I took it, my headache was MUCH worse, hinting that high ICP was present.

I also noticed that when I played my flute, my hand tremor got much worse. This is a "Valsalva maneuver" which increases ICP. So --
Taking acetazolamide (Diamox) eliminated these symptoms for my son and I -- and did so overnight. With those symptoms relieved, we we so much less miserable (and it may hint of an etiology).

I hear of headaches so often in our population, and often wonder who else may suffer with high ICP, yet remain undiagnosed? And how many children are suffering who are not able to explain their symptoms? Yikes.
Here is an article for you: High ICP in CFS (http://www.ncbi.nlm.nih.gov/pubmed/24475346)

My son and I chose NOT to have lumbar punctures for many reasons -- fear, bad connective tissue can lead to leaks, and risk of the procedure, to name a few. Instead, we believe that the treatment was diagnostic itself.

I hope this can help others! BTW, my son and I don't need Diamox anymore, except for some illnesses. Clearly, our ICP increased due to the viruses and eventually went back down (after about 18 months).

I just wanted to be sure to keep sharing this because so many of us may be able to get some immediate relief (inexpensively).


Does this sound like you? (and is this blue font hard to read?
Diana

 

[Who Me?]

Yes. Blue font is horrible for me. Painful almost.

 

[Cort]

I wanted to share with you all how locating and treating high intracranial pressure, was a big first step in the recovery of my kids and I (not a cure by any means, but what a huge help it was!) --

My son and I were triggered by viruses (regular old viruses that others had no trouble with). I couldn't help but notice that many of my symptoms hinted at high intracranial pressure (ICP), such as dizziness, nausea, headache, neck pain, some ringing of the ears, tremor, sensitivity to light, sound, movement, for example. I was diagnosed with POTS (postural orthostatic tachycardia syndrome) and was given Florinef (it increases blood volume) to see if increased blood volume would help. When I took it, my headache was MUCH worse, hinting that high ICP was present.

I also noticed that when I played my flute, my hand tremor got much worse. This is a "Valsalva maneuver" which increases ICP. So --
Taking acetazolamide (Diamox) eliminated these symptoms for my son and I -- and did so overnight. With those symptoms relieved, we we so much less miserable (and it may hint of an etiology).

I hear of headaches so often in our population, and often wonder who else may suffer with high ICP, yet remain undiagnosed? And how many children are suffering who are not able to explain their symptoms? Yikes.
Here is an article for you: High ICP in CFS (http://www.ncbi.nlm.nih.gov/pubmed/24475346)

My son and I chose NOT to have lumbar punctures for many reasons -- fear, bad connective tissue can lead to leaks, and risk of the procedure, to name a few. Instead, we believe that the treatment was diagnostic itself.

I hope this can help others! BTW, my son and I don't need Diamox anymore, except for some illnesses. Clearly, our ICP increased due to the viruses and eventually went back down (after about 18 months).

I just wanted to be sure to keep sharing this because so many of us may be able to get some immediate relief (inexpensively).


Does this sound like you? (and is this blue font hard to read?
Diana

I changed the font to help out Minx's eyes - I hope that's all right. (I have such power!) I think @Merida would be interested in this.

My lumbar puncture indicated I had high intracranial pressure and guess what - I felt so much more relaxed directly after it - Not what I expected!

I did a blog on the ICP study. It got lots of responses. I think it is common in ME/CFS. Pressure Building? Study Suggests Cerebral Spinal Fluid Pressure May Be Causing Problems in Chronic Fatigue Syndrome

If it's common in ME/CFS I'd bet my bottom dollar it's even more common in FM with all the head and neck problems there.

So Diamox helped...I had no idea there a drug could help with that and I have no idea Diamox is but I'm going to look more into it... thanks.

it's a fascinating subject...

 

[Cort]

Yes. Blue font is horrible for me. Painful almost.

Turned to black...

 

[Who Me?]

Turned to black...

If you have to ask if its a problem it probably is.

 

[Cort]

Here's some information on Diamox - a most interesting drug. It's a diuretic and is also used for seizures and central sleep apnea and others. I do wonder about the low blood volume problem given that it's a diuretic. On the other hand it could help with increased CO2 levels which I believe are present in some people with ME/CFS. It increases oxygen levels in the blood.

Acetazolamide, usually sold under the trade name Diamox in some countries, is a carbonic anhydrase inhibitor that is used for the medical treatment of glaucoma, epileptic seizure, idiopathic intracranial hypertension, altitude sickness, cystinuria, periodic paralysis, central sleep apnea, anddural ectasia.

Acetazolamide is a diuretic, and it is available as a generic drug in the United States.Diamox is now available as Diamox Sequels in the United States since the original product is no longer made or sold there.[1][2]
Medical uses[edit]

It has also been used in the treatment of mountain sickness,[6] Ménière's disease, increased intracranial pressureand neuromuscular disorders.[2]

" In the treatment of mountain sickness, acetazolamide forces the kidneys to excrete bicarbonate, the conjugate base of carbonic acid. By increasing the amount of bicarbonate excreted in the urine, the blood becomes more acidic.[2] As the body equates acidity of the blood to its CO2 concentration, artificially acidifying the blood fools the body into thinking it has an excess of CO2, and it excretes this imaginary excess CO2 by deeper and faster breathing, which in turn increases the amount of oxygen in the blood.[10][11]

 

[Diana Driscoll]

I changed the font to help out Minx's eyes - I hope that's all right. (I have such power!) I think @Merida would be interested in this.

My lumbar puncture indicated I had high intracranial pressure and guess what - I felt so much more relaxed directly after it - Not what I expected!

I did a blog on the ICP study. It got lots of responses. I think it is common in ME/CFS. Pressure Building? Study Suggests Cerebral Spinal Fluid Pressure May Be Causing Problems in Chronic Fatigue Syndrome

If it's common in ME/CFS I'd bet my bottom dollar it's even more common in FM with all the head and neck problems there.

So Diamox helped...I had no idea there a drug could help with that and I have no idea Diamox is but I'm going to look more into it... thanks.

it's a fascinating subject...

Well, isn't that amazing that you had a similar experience?
I would like to propose something -- what are your thoughts?
Diamox (when properly prescribed) could be used as an inexpensive, low-risk diagnostic procedure. Rather than undergo a procedure with some risk (and maybe pain) and expense, could a positive response to Diamox be diagnostic in itself?

Another reason this may be important, is that many people have undiagnosed connective tissue problems (some are hypermobile, some have a diagnosis of EDS, most are never diagnosed) are more prone to spontaneous spinal leaks and poor healing of the LP site (sometimes opening up even years later). This leaking, even when patched, can continue and can be a source of disability in and of itself.

I think it is time for a more conservative approach.
Cort, is your intracranial pressure under control now? For many of us, this increase in ICP is temporary. In that light, I would encourage others to reconsider having a brain shunt, or as many of us do -- having neck fusions/ Chiari surgery when no Chiari is present until the doctors have exhausted more conservative approaches. Sound crazy? These procedures are common place in the hypermobile (EDS) chronic fatigue folks. Yeeks.
OK, staying with a black font!

 

[Diana Driscoll]

If you have to ask if its a problem it probably is.

So sorry, Minx -- it's always a battle between beauty and pain, right? lol

 

[Merida]

This is great information. Thanks Diana. Cort, oh yes, I am sooooo interested. Finally some important information that can help us tie together groups of patients who have seemingly unrelated initiating causes - like viral or injury. Unfortunately for those of us with a small posterior fossa ( yes, mine was measured according to published protocol) and neck trauma the high pressure may be ongoing. I have been well aware of Diamox, but avoided it due to sulfa allergy.

There is a great book which explores normal pressure hydrocephalus and the entire issue of blood and CSF drainage from the brain : The Downside of Upright Posture : The Anatomical Causes of Alzheimer's, Parkinson's, and Multiple Sclerosis, by Michael Flanagan, DC. He is trained in chiropractic neurology and also has had extensive study in the design/sutures of the human skull - investigating mammalian/ human skulls at the American Museum of Natural History, New York. He delves into many tricky neuro issues issues on his site: http://www.upright-health.com

I wrote to Dr. Flanagan hoping to get him to do a blog article, pending conversation/agreement with Cort. Here is a great quote from Dr. Flanagan's book ( page 7) , " The unique design of the skull, spine, and circulatory system of the brain, as a result of upright posture , may predispose humans to NPH ( normal pressure hydrocephalus) and neurodegenerative diseases of the brain and cord due to inherited and acquired disorders and degenerative conditions of the cervical spine, especially the upper cervical spine and the base of the skull."

So, if this is true, why hasn't a few million years of selective evolutionary pressures corrected this unadaptive problem ? Maybe that is a topic for the CFS/FM X Files. I can say no more on that topic

 

[Diana Driscoll]

This is great information. Thanks Diana. Cort, oh yes, I am sooooo interested. Finally some important information that can help us tie together groups of patients who have seemingly unrelated initiating causes - like viral or injury. Unfortunately for those of us with a small posterior fossa ( yes, mine was measured according to published protocol) and neck trauma the high pressure may be ongoing. I have been well aware of Diamox, but avoided it due to sulfa allergy.

Hi Merida,
I, too, have a small posterior fossa! Neck fusions and Chiari surgery (for Chiari zero) were proposed for my kids and I. Rather than changing the anatomy with these surgeries, however, we lowered our intracranial pressure and overnight these symptoms went away. I kid you not.

When my kids and I lowered our intracranial pressure with Diamox, our "cranio-cervical instability" (as it was called, and appeared to be -- my neck MRI was a mess) stopped. I had been wearing a cervical collar most of the time for about 2 years and the pain in the back of my head radiating down my neck was debilitating. My son was the same way, and both of us seemed OK prior to viruses, so I presumed this wasn't all anatomical -- and perhaps it could be treated medically. And so it was!

I wanted to mention (and messaged you some details) that an allergy to sulpha antibiotics does NOT carry over to Diamox. This is a common misconception. Now you could still have an allergy (as you can to anything), but it wouldn't be because of your allergy to sulpha. Does that make sense? I wrote something about this for others (with a pharmacologist PhD). I wonder if this helps?

"Note on Sulfa Allergy: An allergy to sulpha antibiotics does not produce cross-reactions to acetazolamide (or furosemide).http://www.cortjohnson.org/forums/#_edn1 Acetazolamide has a chemical structure and pharmacologic action distinct from sulfonamide antibiotics. The N1 heterocyclic ring and N4 amino nitrogen in sulfonamide antibiotics is responsible for the allergic responses and cytotoxic T-cell responses.[ii] [iii] Acetazolamide, a non-antibiotic sulfonamide, does not possess either of these structural entities. [iv]

http://www.cortjohnson.org/forums/#_ednref1 Lee AG, Anderson R, Kardon RH, Wall M. Presumed “sulfa allergy” in patients with intracranial hypertension treated with acetazolamide or furosemide: cross-reactivity, myth or reality? Am J Ophthalmol. 2004 Jul;138(1):114-8.
[ii] Brackett CC. Sulfonamide allergy and cross-reactivity. Curr Allergy Asthma Rep. 2007;7:41-48. doi:10.1007/s11882-007-0029-8.
[iii] Knowles SR, Uetrecht J, Shear NH. Idiosyncratic drug reactions: the reactive metabolite syndromes. Lancet. 2000;356:1587-1591. doi:10.1016/S0140-6736(00)03137-8.
[iv] Kelly TE, Hackett PH. High Alt Med Biol. 2010;11(4):319-23. doi:10.1089/ham.2010.1051."

There are other medications that can be used, but Diamox is hard to beat. Although we no longer need it, it was life-changing for us so I'd like to share the word where I can. My guess is, our anatomy sets us up for this, and triggers like viruses and injuries are enough to push us over the edge. I hope the information can somehow help you!

 

[Diana Driscoll]

Here's some information on Diamox - a most interesting drug. It's a diuretic and is also used for seizures and central sleep apnea and others. I do wonder about the low blood volume problem given that it's a diuretic. On the other hand it could help with increased CO2 levels which I believe are present in some people with ME/CFS. It increases oxygen levels in the blood.

Thanks, Cort! It DOES make me wonder about how many of us suffer from periodic paralysis, epilepsy (and in my experience cataplexy) from high intracranial pressure, yet go undiagnosed (especially KIDS who are unable to express symptoms).

As far as the diuretic effect, I worried about that, too. It is a mild diuretic (although as you pointed out, that is not the reason we would take it -- it's not the method of action for us). My kids and I had POTS (OI) and I was concerned. The diuresis wasn't an issue for us -- just the opposite, actually, By relieving the pressure (and allowing the brain to float, and minimizing pressure on the brain stem), my POTS improved. It's is the opposite how most of us with POTS (OI) are being treated, and it is an important condition to recognize, I think.

When I took Florinef (to increase my blood volume, as we try to do with POTS), my symptoms spiked, and I was then able to recognize that I had high intracranial pressure. I see some folks here with similar experiences, but their doctors are not thinking in terms of high intracranial pressure as a contributing factor (which I can understand). I think this is much more common than even the lumbar puncture study found.
Thank you for letting me share!

 

[Who Me?]

So sorry, Minx -- it's always a battle between beauty and pain, right? lol

I'm not sure why causing pain is humorous to you. These forums are here to be helpful. Pretty doesn't matter, Especially of it causes physical discomfort to someone.

 

[Remy]

I wanted to mention (and messaged you some details) that an allergy to sulpha antibiotics does NOT carry over to Diamox.

This is interesting...I had looked at Diamox after seeing it on your website years ago but dismissed it as I also have a sulfa allergy.
Hmmm, may have to put this one back on the list of possibilities to investigate.

 

[Merida]

Diana,
Wow. I just can't thank you enough for sharing - and adding a little humor, too. Your Diamox info is so important. It seems critical that researchers look very carefully at what John Upledger, DO, and the great sacro-occipital chiros have discussed and researched for years : The fact that there is a cranial rhythmic impulse of 12 to 14 pulses a minute. It is thought to originate in the glial cells. ( !!!!) Good practitioners have no trouble feeling this pulse which emanates through the entire body.
Also, the occiput and sacrum have a rhythmic movement which is responsible for pumping CSF from the sacral bulb back to the brain to be reabsorbed. This is important because once the sacrum destabilizes, the entire system can become cattywonk.

Let's talk some more. Trying to figure out how to do that. I am slow, and I must lie down immediately. Back here on Saturday.

Thanks again. This has been a profound revelation for me.

 

[Diana Driscoll]

This is interesting...I had looked at Diamox after seeing it on your website years ago but dismissed it as I also have a sulfa allergy.
Hmmm, may have to put this one back on the list of possibilities to investigate.

Yes, Remy -- absolutely keep it on your list of possibilities! I know the safest thing is always to do nothing, but for many of us that is not an option. When we need to reduce our intracranial pressure, the risks of medication (especially understanding the pharmacology of sulpha allergies) is so much less than a brain shunt (or even a lumbar puncture). If high intracranial pressure is indeed one of your problems, you may be able to get significant (and immediate) relief. Your doctors can approach this cautiously, with every contingency in mind, too. Keep us posted?

 

[Diana Driscoll]

Diana,
Wow. I just can't thank you enough for sharing - and adding a little humor, too. Your Diamox info is so important. ... This has been a profound revelation for me.

Awesome! If you do indeed have high intracranial pressure, relieving that can return a great deal of functionality. It also gives us some clues as to some underlying problems causing your condition. Valuable information!
I'm afraid my humor is not for everyone, but I do rely on humor to get through each day. For me, it helps keep me sane, and my family finds it a little easier to tolerate both me and the journey our family is on. I would say it is my coping mechanism (year 11 of this condition), but honestly, I've always been this way. Perhaps I should put a humor-warning on my posts...

 

[Who Me?]

@Diana Driscoll I'm Glad you are helping people with this thread.

I just want to say I have a great sense of humor and like you it saves me.

But imagine going to an interesting thread and feeling like someone blasted you in the eyes with a laser. That's what the blue font did to me. Even with F.lux dark it was blinding.


I don't want to keep harping on this but I honestly don't get why you can't see how this isn't funny to me and others who have problems with lights and colors. It has nothing to do with whether I have a sense of humor or not.

 

[Remy]

I don't want to keep harping on this but I honestly don't get why you can't see how this isn't funny to me and others who have problems with lights and colors. It has nothing to do with whether I have a sense of humor or not.

I really think she was poking fun at herself, Minx, and her desire to make all things, including forum fonts, beautiful. I don't think it was about thinking it was funny to cause you pain. And now it's fixed!

 

[Who Me?]

@Remy. You're probably right. Once my brain gets stuck on something, I can't see it any other way.

 

[Cort]

S

Thanks, Cort! It DOES make me wonder about how many of us suffer from periodic paralysis, epilepsy (and in my experience cataplexy) from high intracranial pressure, yet go undiagnosed (especially KIDS who are unable to express symptoms).

As far as the diuretic effect, I worried about that, too. It is a mild diuretic (although as you pointed out, that is not the reason we would take it -- it's not the method of action for us). My kids and I had POTS (OI) and I was concerned. The diuresis wasn't an issue for us -- just the opposite, actually, By relieving the pressure (and allowing the brain to float, and minimizing pressure on the brain stem), my POTS improved. It's is the opposite how most of us with POTS (OI) are being treated, and it is an important condition to recognize, I think.

When I took Florinef (to increase my blood volume, as we try to do with POTS), my symptoms spiked, and I was then able to recognize that I had high intracranial pressure. I see some folks here with similar experiences, but their doctors are not thinking in terms of high intracranial pressure as a contributing factor (which I can understand). I think this is much more common than even the lumbar puncture study found.
Thank you for letting me share!

So one indication that intracranial pressure is present and diamox might help might be a bad reaction to florinef...Interesting!