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Intracranial Hypertension??? /headaches?

frozenborderline

Senior Member
Messages
4,405
Recently I have been having headaches that feel like pressure headaches, especially in the back of the head. But given that I don't generally have "essential hypertension" and am young and generally normotensive or only a little high I didn't go to the ER because I didn't consider it a hypertensive headache.

The headaches also involve a feeling of swelling/too much fluid. I will bend over and feel awful as fluid feels like it's rushing down and increasing pain.

It seems like there's commonly overlap between CFS and even mild idiopathic intracranial hypertension. The treatment is generally a lumbar puncture both to diagnose and to relieve pressure, and then acetazolamide.

What are your thoughts on the etiology of intracranial hypertension? do you think thyroid could help or is it contraindicated? Do you think thiamine could help?

Aspirin?

Yoga?


Also is this something that warrants an ER visit or something or can I wait it out? I'm really kind of scared
 

AdamS

Senior Member
Messages
339
In the UK, there is a non-emergency line you can call where they ask some screening questions to determine whether you need to make a trip to hospital, i’m not sure if you have similar where you are? If you’re scared then it would probably be good to speak to an expert to put your mind at rest.

I often have positional headaches as part of this illness and sometimes pretty weird feelings of dizzyness inside my actual head where I can feel pressure. No idea what causes it but i’ve considered looking into Cerebrospinal Fluid Leaks, Chiari Malformation, Craniocervical Instability etc
 

crypt0cu1t

IG: @crypt0cu1t
Messages
599
Location
California
I know this is an older thread, but I was wondering if you found anything to alleviate this? It's one of my most debilitating symptoms.

Ever had an MRI?

My Dr. Is prescribing me Diamox to try it out. I'll let you know if it ends up working.
 

sb4

Senior Member
Messages
1,654
Location
United Kingdom
I think you guys should check out this thread ( https://forums.phoenixrising.me/ind...uled-out-chiari-as-a-cause-of-your-cfs.56908/ ) and @jeff_w posts.

Also you may find this interesting http://www.theilcfoundation.org/wp-content/uploads/2012/04/Driscoll_Theory_EDS_-_Online3.pdf

Basically, there is significant overlap with CFS, EDS, IIH, CCI, and Chiari. Some people have achieved complete remission from there ME/CFS/POTS by treating CCI/IIH/Chiari. It seems that viral infections, physical trama, and EDS can all cause conective tissue issues that can cause the vessels that hold and drain the CFS to function badly, causing extra pressure from CFS buildup; Or cause instability in the cervical spine.

I am currently bugging my doctors to try and get an upright MRI with not much success so far.
 

frozenborderline

Senior Member
Messages
4,405
I know this is an older thread, but I was wondering if you found anything to alleviate this? It's one of my most debilitating symptoms.

Ever had an MRI?

My Dr. Is prescribing me Diamox to try it out. I'll let you know if it ends up working.
the bad headaches and pressure feeling just kind of went away. other symptoms of mine remain severe but I do hope the headaches don't come back
 

crypt0cu1t

IG: @crypt0cu1t
Messages
599
Location
California
I think you guys should check out this thread ( https://forums.phoenixrising.me/ind...uled-out-chiari-as-a-cause-of-your-cfs.56908/ ) and @jeff_w posts.

Also you may find this interesting http://www.theilcfoundation.org/wp-content/uploads/2012/04/Driscoll_Theory_EDS_-_Online3.pdf

Basically, there is significant overlap with CFS, EDS, IIH, CCI, and Chiari. Some people have achieved complete remission from there ME/CFS/POTS by treating CCI/IIH/Chiari. It seems that viral infections, physical trama, and EDS can all cause conective tissue issues that can cause the vessels that hold and drain the CFS to function badly, causing extra pressure from CFS buildup; Or cause instability in the cervical spine.

I am currently bugging my doctors to try and get an upright MRI with not much success so far.
Im getting an upright MRI to rule all of this out as requested by Dr. Chheda.

The only thing confusing to me is that I have autoantibodies indicating autoimmunity. Perhaps autoimmunity is a consequence of CCI/Chiari?
 

Violeta

Senior Member
Messages
2,895
Melatonin reduces intracranial hypertension caused by trauma. I don't know if it help when caused by other circumstances.

I have a terrible headache all day today and I am trying melatonin. Just took my first dose a couple of minutes ago. It's a low dosage capsule, I might try a higher dose in an hour if this provides any help at all.

The study:

Effect of melatonin on intracranial pressure and brain edema following traumatic brain injury: role of oxidative stresses

https://pubmed.ncbi.nlm.nih.gov/236...brain edema,to inhibition of oxidative stress.
 

Violeta

Senior Member
Messages
2,895
Melatonin reduces intracranial hypertension caused by trauma. I don't know if it help when caused by other circumstances.

I have a terrible headache all day today and I am trying melatonin. Just took my first dose a couple of minutes ago. It's a low dosage capsule, I might try a higher dose in an hour if this provides any help at all.

The study:

Effect of melatonin on intracranial pressure and brain edema following traumatic brain injury: role of oxidative stresses

https://pubmed.ncbi.nlm.nih.gov/23608674/#:~:text=Conclusion: Melatonin decreases brain edema,to inhibition of oxidative stress.

I don't think the melatonin worked. Not long after taking it the headache got worse, felt like my head was in a vice with pain in both temples along with pain in my face and everywhere else a little worse. So I took an alka seltzer and then a little later some tyrosine and butcher's broom. I reread a post about someone bringing down their bp and it made their head feel worse, so I thought maybe that was the case instead of hypertension.

My head feels better this morning.

I really don't know. But if anyone else tries melatonin, let me know how it goes.
 

kewia

Senior Member
Messages
233
They didn't stay away. It turned out I had craniocervical instability and needed surgery. That's a possible cause of high icp

But you said they were gone in the past, did they come back after they were gone?

Yes, I'm sorry you have CCI, did you get worsening of your symptoms in specific neck positions?
How severe is your CCI?
 

frozenborderline

Senior Member
Messages
4,405
But you said they were gone in the past, did they come back after they were gone?

Yes, I'm sorry you have CCI, did you get worsening of your symptoms in specific neck positions?
How severe is your CCI?
They fluctuated

My cci was severe enough to require surgery and then my surgery failed
 

kewia

Senior Member
Messages
233
They fluctuated

Hmm, interesting, then I'm contemplating if it's really due to CCI, idk.

Sorry for stabbing you, but did you get increased muscle inflammation in the neck and the back of your head when intracranial pressure increases?
For me, neck/back of my head inflammation increases dizziness and I have that especially high between 13:00 and 15:00.

My cci was severe enough to require surgery and then my surgery failed

That's really sad to hear. My sympathies to you.
Did you have a fusion or stem cell therapy?
 

Rufous McKinney

Senior Member
Messages
13,251
I have been wondering if glymphatics status affects intracranial pressure.

Draining of fluid in glymphatic is driven by cerebral arterial pulsation. Van Elzakker mentioned that in the video about glymphatics.

I think Dr. Hauser at the Florida Prolotherapy place has videos talking about neck alignment and glymphatic drainage.

personally think its half my problem....brain not being flushed and cleaned...lymph not flowing well and both alignment and ligament laxity in the neck.
 

frozenborderline

Senior Member
Messages
4,405
I think Dr. Hauser at the Florida Prolotherapy place has videos talking about neck alignment and glymphatic drainage.

personally think its half my problem....brain not being flushed and cleaned...lymph not flowing well and both alignment and ligament laxity in the neck.
And to @Violeta

I have a section on my etiology theory on my website concerning itself with glymphatics and its relationship to cci. You may want to check it out.