Idiopathic Intracranial Hypertension (Increased Spinal Fluid Pressure): Anyone Have It?

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I apparently do. I dreaded by spinal fluid tap and it was a rough one- the dude probed away there - hitting some darn sensitive spots and later I lifted something - giving me a splitting headache for a week but right afterwards, man, I was feeling good.
"Your lumbar pressure is high" I remember Dr. Baraniuk commenting as a doctor started removing my cerebral spinal fluid during a spinal tap for a study. "We don't know what it means - it might not mean anything - but I see it a lot in ME/CFS".

Headache is a common symptom of IIH
After I was wheeled to another room I congratulated myself on having not only survived my first spinal tap but on feeling so well afterwards. I was relaxed and my mind felt clear.

In fact, I couldn't remember the last time I'd felt this calm. I should have these lumbar punctures more often, I thought.

A doctor found very high rates of IIH in ME/CFS patients - spinal taps tended to reduce their symptoms. Their spinal fluid pressure was too high. They didn't fit other aspects of IIH but the high rates of tinnitus, headaches and stiff muscles fit. I'm having more head pain and my tinnitus is getting louder. I wonder if my IIH has increased?
 

Issie

Well-Known Member
Some with POTS are finding this to be an issue. What they are using is Diamox and baking soda caps. The Diamox helps lower the pressure but it makes you real acidic. I tried it (I think I tried everything). It did help the head pressure, but in the end I felt worse. That's also when my kidneys got so bad and I wonder if the med or baking soda did it. The illness is called hydrocephalus. If you want a medical name for it.

Issie
 

Issie

Well-Known Member
Oh, what has helped all of us is sleeping with our head elevated. Lying flat makes it MUCH worse.

Issie
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Interesting. I had some dental work done about a week ago. When I lie down my teeth or rather my jaw hurts so much more. I'm going to add some baking soda and see what happens. I keep hearing about it.

Diamox is an interesting drug: Acetazolamide is used to treat glaucoma and to treat and to prevent acute mountain sickness (altitude sickness). It is also used as a part of some treatment plans for congestive heart failure and seizure disorders.
 

Issie

Well-Known Member
Be careful with the baking soda. It's one thing I question as to daily use. It is sometimes used in emergency treatment for heart problems at ERs and is very carefully administered.

Propping up, doesn't cost anything and it's not likely to cause adverse side effects. :)


Issie
 

Issie

Well-Known Member
To qualify for having POTS your pulse rate has to increase to 120 Or higher (mine at its worst was about 168, from the simple act of standing from sitting, within 5 minutes - some has it worse than me) within 15 minutes of standing. Some may have a delayed response and Mayo now does longer tilts to pickup on those. It's not what our bps do so much, They base it on what our heart rates do. We have orthostatic issues with it for sure. We all, with POTS, have this drop. Those of us with higher bps tend to not be the fainters. Those with the lower bps do.

Issie
 

Issie

Well-Known Member
Yeah i guess its all positional changed etc not really idiopathic intracranial hypertesion. Its not really alter as much by position and hr is where it is due to pain?
Maybe. Pain can increase heart rate. TRUE. But, with POTS the heart rate increase is thought to be a compensation to get blood to the heart and the head. It's the bodies way of trying to keep us alive. The symptoms are hard to handle though. I find that I do better not masking this compensation. Trying to open up veins with enzymes and help endothelial health would calm the sympathetic system down and it won't have to over compensate.

I don't use the traditional POTS meds. Most of them I question. I do however use some meds. But diet has been one of my best helps. I hope, with time and healing, I will be able to get off my meds and most supplements. Can't just yet. But working on it.

Issie
 

Merida

Well-Known Member
This is a very important discussion. The high ( and low) intracranial pressure problem is explained very nicely in Diana Driscoll's book, and in The Downside of Upright Posture by Michael Flanagan. I must have this as well as the neurosurgeon ( after CINE MRI ) study told me that he often has to shunt people like me. Did not have neurosurgery.

I tried NUCCA chiropractic, where the atlas is adjusted carefully, using X-ray information on misalignment. I could feel some improvement with each little move of the atlas, but it didn't hold. There is also the atlas orthogonal procedure. One person in support group got rid of her headaches this way .

So, is our basic problem poor CSF drainage and/ or poor arterial and venous circulation in the brain? Has there been any research in this area for us ? Seems really important.
 

Issie

Well-Known Member
This is a very important discussion. The high ( and low) intracranial pressure problem is explained very nicely in Diana Driscoll's book, and in The Downside of Upright Posture by Michael Flanagan. I must have this as well as the neurosurgeon ( after CINE MRI ) study told me that he often has to shunt people like me. Did not have neurosurgery.

I tried NUCCA chiropractic, where the atlas is adjusted carefully, using X-ray information on misalignment. I could feel some improvement with each little move of the atlas, but it didn't hold. There is also the atlas orthogonal procedure. One person in support group got rid of her headaches this way .

So, is our basic problem poor CSF drainage and/ or poor arterial and venous circulation in the brain? Has there been any research in this area for us ? Seems really important.
Here is some info you may find to be helpful and interesting. There is a lot to read - but addressing Protozoa that forms bio films has been my best form of treatment in all the years of my looking for answers. I tried nearly everything. (I tried Driscolls protocol. I think that it caused my kidneys to go into 3rd stage Chronic Kidney Disease. Not only that but in the long run - everything got worse. Addressing MCAS (mast cell activation syndrome) with mast cell protocol will help to address hydrocephalus if that is an issue. When I got on that protocol all my head pressures and POTS got better.) As for addressing the Protozoa and Lyme with coinfections that works on the immune system and inflammation. The one Protozoa that is similar to malaria forms a biofilm that adheres to vein walls and hinders not only the mechanics of their function but hinders blood flow. The diet I went on for this actually reversed my kidney damage to stage one. I think had I not done this and found Dr Fry - I would be dead right now. And I'm not exaggerating that. I was that sick. I'm to the point now of not feeling like I need to research and continue to search for answers. I'm still finding pieces here and there. But this has been my big Ah Haaa!!! If the immune system were working properly these organisms may not be a problem and may be kept in check. But for some of us - they don't detect and they for sure make us very sick.
http://www.cortjohnson.org/forums/threads/dr-stephen-fry-and-protozoa-my-life-is-greatly-improving.2122/

Issie
 

Merida

Well-Known Member
Thank you, Issie, for this interesting information. I appreciate that Diamox can have diuretic effects, and could disturb kidney function.
I really have to read about these protozoa and biofilms, as I don't know anything. There should be some standard research somewhere. And there must be some way for the protozoa to enter the blood.

So, I will check it out. There are many mysteries about this illness. But, for me, I know I have abnormal CSF flow - had the studies in 2005 - CINE MRI with neurosurgeon. So, that can explain everything. Maybe I have abnormal blood flow to the brain too. Working on that.

I guess I kept hoping there might be something more easily corrected, but I really think I know what is wrong with me anyway.
But poor fluid dynamics in the brain and neck may not be the answer for everyone.

So, I will check out this interesting idea of biofilms in the blood vessels.
 

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