High intracranial pressure symptoms anyone?

dee

Active Member
oh Diana, cort, all!

I asked 3 drs. about Diamox and they all say they never heard of it! how in the world do I get it? I've heard for a while now that this drug HELPS our brains/headaches that I wanted to try it but when you keep getting a response like this from drs. HOW do I get it??? my brains about to EXPLODE!!! i'm beginning to hit my head again trying to get that pressure out, gone, whatever!!! :dead: :hungover:

still having trouble getting around here! lol
 

Merida

Well-Known Member
Dee,
Geez, all they have to do is Google Diamox or acetazolamide. I just picked up a trial prescription of 10 pills. My pain doc was not real excited about this experiment, and wanted me to be watched over by a neurologist. Like, yah, what neurologist ??
( I have seen about 6 over the years and gave up when it was always just a matter of trying the same pills I already tried.)

If you could find a neurologist or Ehlers-Danlos specialist familiar with Chiari malformations, they would know about this drug. Try these websites, as they may have recommendations for doctors : Conquer Chiari, Chiari and Syringomyelia Foundation. Also, the Ehlers- Danlos sites - don't know those.

So, the Diamox comes in 125 and 250 mg. tablets. I am going to break a 125 in half to start. I will keep you posted on my experiment. If I decide to take this long term I will have to have a doc to help me monitor.

Hope Diana sees your post. And, if Diamox is helping a significant group of CFS/FM people, why aren't the researchers on this ??
 

dee

Active Member
Dee,
Geez, all they have to do is Google Diamox or acetazolamide. I just picked up a trial prescription of 10 pills. My pain doc was not real excited about this experiment, and wanted me to be watched over by a neurologist. Like, yah, what neurologist ??
( I have seen about 6 over the years and gave up when it was always just a matter of trying the same pills I already tried.)

If you could find a neurologist or Ehlers-Danlos specialist familiar with Chiari malformations, they would know about this drug. Try these websites, as they may have recommendations for doctors : Conquer Chiari, Chiari and Syringomyelia Foundation. Also, the Ehlers- Danlos sites - don't know those.

So, the Diamox comes in 125 and 250 mg. tablets. I am going to break a 125 in half to start. I will keep you posted on my experiment. If I decide to take this long term I will have to have a doc to help me monitor.

Hope Diana sees your post. And, if Diamox is helping a significant group of CFS/FM people, why aren't the researchers on this ??

hey, thanx for the info but are neuros the only ones that give it out? I saw 3 and 1 of them doesn't believe in this illness while the other 2 sent we walking to see a therapist!!! I did, NOTHING!!! this is NOT in the head, well you know what I mean, too bad THEY don't know it! thanx again!
 
Dee, If you have symptoms of high intracranial pressure, then Diamox may reduce the pressure and relieve some symptoms. ANY doctor who is willing to listen and who wants to help you can write the prescription (as an optometrist, we use Diamox in the office, and many people use it to prevent altitude sickness when travelling to the mountains). The continued use of Diamox requires some electrolyte monitoring, but honestly, this is not difficult. One patient I know wrote some pointers here (just scroll down to "Diamox Pointers"). I hope that helps! :)
 

dee

Active Member
is the electrolites like the things pedialyte has? can you take this meant for diarrhea? thanx for helping me. still having trouble getting around here with brain not working and was posting something I hadn't even typed yet! lol so NOT fun suffering with M.E.! thanx again!
 

dee

Active Member
Dee,
Geez, all they have to do is Google Diamox or acetazolamide. I just picked up a trial prescription of 10 pills. My pain doc was not real excited about this experiment, and wanted me to be watched over by a neurologist. Like, yah, what neurologist ??
( I have seen about 6 over the years and gave up when it was always just a matter of trying the same pills I already tried.)

If you could find a neurologist or Ehlers-Danlos specialist familiar with Chiari malformations, they would know about this drug. Try these websites, as they may have recommendations for doctors : Conquer Chiari, Chiari and Syringomyelia Foundation. Also, the Ehlers- Danlos sites - don't know those.

So, the Diamox comes in 125 and 250 mg. tablets. I am going to break a 125 in half to start. I will keep you posted on my experiment. If I decide to take this long term I will have to have a doc to help me monitor.

Hope Diana sees your post. And, if Diamox is helping a significant group of CFS/FM people, why aren't the researchers on this ??


is CHIARI connected with M.E./CFS?
 

dee

Active Member
is CHIARI connected with M.E./CFS?

sorry, having trouble getting around here with a NON-working brain!
 

Merida

Well-Known Member
Dee, This is a good question. I know a little bit. Back about 15 or so years ago a Dr. Banner ( a family physician) was diagnosed with CFS. Dr. Banner eventually figured out that he had many symptoms that were identical to those reported by people with Chiari malformations. And this is true, do a little search for 'Chiari symptoms.' Dr. Banner eventually connected with neurosurgeon Michael Rosner, who ordered MRIs, etc. The MRIs demonstrated abnormalities consistent with Chiari malformations.

Dr. Banner had surgery and experienced amazing recovery from chronic fatigue symptoms. Another neurosurgeon, Daniel Heffez, joined Dr. Rosner in investigating surgery as a treatment option for people with severe CFS and various cervical spine/skull base anomalies and poor CSF flow ( via CINE MRI flow studies).
There was even a 20/20 program that explored this potentially major break through.

At that time most of the Universe was thinking chronic fatigue/fibro were 'psychiatric.' And these two (wonderful and brilliant) neurosurgeons were doing neurosurgery to cash in on 'psychiatric' patients. Then, all Hell broke loose. Journals refused to publish Dr. Heffez's work on cervical myelopathy ( disorders of the cervical spinal cord) Dr. Rosner lost his license twice. Neurosurgeons became very hesitant and concerned to get at all involved in potential structural issues at the junction between the skull and neck for people dx with CFS/FM.

I actually went to one of these neurosurgeons ( 2005) for a consult and to have a CINE flow study. He measured my posterior fossa - it was small ( according to published data - and this is found in Chiari people). I have a short clivus ( another cranial bone) - also typical in Chiari. My CINE flow study was very abnormal. I do not have cervical stenosis ( or narrowing). Sometimes this is the main problem. Also, my cerebellum is low - blocking spinal fluid to some degree. But, I do not have any downward descent of the cerebellar tonsils. So, no true Chiari. However, due to other structural issues, I end up with the same problem - blocked CSF flow from the brain to the neck and possibly altered blood flow to the brain, and possibly poor venous drainage from the brain.

So, we are right on the edge of knowledge in understanding these complex structures of the central nervous system and exactly how and when they are producing symptoms. I spoke with 3 FM/CFS people at conferences who got very well after 'Chiari surgery.' They had the typical downward herniation of the cerebellum, but had been diagnosed with CFS without ever having an MRI and CINE MRI with an expert neurosurgeon.

More recently there has been discussion of exactly how far do the cerebellar tonsils have to descend in order to call it "Chiari." The old rules said that the cerebellar tonsils must descend at least 5 mm. to be called Chiari. If the tonsils descended 3 mm - and people had all the symptoms - sorry, no Chiari, no surgery. Now some neurosurgeons think that there should be a Chiari O, that is, the cerebellar tonsils do not descend at all, but there is still blockage of spinal fluid flow.

I did try Diamox ( 1/2 of 150 mg.) which reduces spinal fluid production. Not so good for me. I got extremely tired. Lots of peeing, burning nose, funny taste in mouth, full body tingling, blurry vision, headache, mild nausea. Hmmm.

So, . . . . ???? Hope this was helpful.
 

Merida

Well-Known Member
thanx, and I was hoping that drug would help me with this AWFUL pressure for 17+ years!
Dee, Yes, I have pressure, too. The Diamox is certainly worth a try - pending doctor's support. The thing that helps my pressure the most is getting my atlas adjusted. Did you have a neck injury ? Do you know about NUCCA chiropractic and 'atlas orthogonal' adjustment?
 

dee

Active Member
hi, no I know nothing about what you mentioned. I twisted my neck badly many, many yrs. ago and saw my D.O. which twisted my neck and tryed to do my back too but no matter how hard he tried, my back couldn't be cracked! i had another incident which affected my eyes making me almost blind from my neck, I just can't remember it much since M.E. caused me so much forgetfulness that it scares me! I have some degenerative neck discs and upper back too.
 

Merida

Well-Known Member
My CFS/FM began with a neck injury - from a chiropractor twisting and 'cracking' my neck and pelvis. Yes, I lost vision at one point early on - vision was like fractured TV screen - came and went. Had many neuro symptoms, then severe pain and fatigue. Bed-ridden one year.

Recently I have posted about vertebral artery syndrome - vision problems are classic for this problem, as are headaches. I will review, as it is sometimes hard to find old posts : The vertebral arteries to the brain run through small holes ( foramina) on the sides of the neck vertebrae. Some people are born with small holes. Some people have misalignment of the neck vertebrae due to whiplash, while some have rotated vertebrae due to scoliosis. There are other structural issues, too. The end result is the same - reduced blood flow, and possible reduced spinal flow drainage.

Read about NUCCA chiropractic and the atlas ( which is the top vertebra - and very critical to all of this) orthogonal technique.
 

Merida

Well-Known Member
Dee,
'Regular' doctors are unaware of NUCCA chiropractic and atlas orthogonal adjustments, as these procedures are part of chiropractic knowledge and research. Misalignment of the vertebrae in the neck can change spinal fluid flow from the brain down to the pelvis and also change blood flow to and from the brain. The eyes/vision can be affected by these two problems. Any interruption/change of vision is very important and must be investigated by a doctor.
 

dee

Active Member
merida, this happened in the 70's and my eyes have been checked many times since then by optom. and opthamol's. a misalignment may cause the strange blindness I got but could that twist in my neck cause other problems such as the symptoms of M.E. that I could be experiencing today? M.E. came on suddenly overnight BUT I do remember 2 terrible things that happened right before I fell bedridden that I thought might have been a warning. what dr. should I be seeing? I saw dr. lerner but his protocol would be TOO hard to do with this illness. he thinks its certain viruses in me since he suffered from this illness and treated himself with anti-viruses.
 

Merida

Well-Known Member
Dee,
Gee, I am just a patient, and you really need a good doctor to take a thorough look - with MRIs of brain/ neck spinal cord, I would imagine - to start. My symptoms started suddenly after a neck/pelvis injury - during the night - heard/felt a snap behind my ear. My son's symptoms ( age 5) started suddenly one afternoon two weeks after having known Epstein-Barr with fever, etc. But, interestingly, he probably had a neck trauma during birth - they used suction to get him out.

It is just my thought that people who have had neck trauma may be more susceptible to a viral attack of the nervous system. This is not proven - just an idea. And that is what is so frustrating about this illness. No one really knows. Many things could be wrong: thyroid, scoliosis-related issues, neck out of alignment, Chiari or 'Chiari O', a spinal fluid-type cyst in the spinal cord or lower brain, chronic Lyme, chronic viruses, toxoplasmosis, and more.

It seems that the details of how the first symptoms began may be important. I wish I could be of more help.

If you have some interest and 'belief' in metaphysical ideas, you could try asking your guides and the "Universe' to bring you the information you need. To guide you to the doctor who can help you. This takes some persistence, but sometimes amazing things happen.
 
Here is my experience with Normal Pressure Hydrocephalus. It is my re-post from a "Walking and Thinking" thread. I just want to share again because my diagnosis took so long and I wouldn't want that to happen to anyone else.

"I have fm and in the past I had a great deal of difficulty walking and thinking. At its worst I could not walk and talk at the same time. All of my movements were slowed and I used a walker. It would take a prohibitively long time just to get up to go to the bathroom. I had mild dementia and incontinence. I saw many docs and no one knew how to address it. In my case I was held back by the fact that docs were trying to pin it to fibromyalgia. I was unbelievably fortunate to see a neurologist who had the answer. He diagnosed it as "normal pressure hydrocephalus" ie "water on the brain". The diagnosis was arrived at through a thorough interview and testing. I had all 3 of the classic symptoms of NP hydrocephalus: gait disturbance, mild dementia and incontinence. Further studies through a CT scan and then a spinal tap confirmed the diagnosis. The CT scan showed enlarged ventricles. Removal of even a small amount of spinal fluid at the time of the spinal tap relieved the symptoms but only for an hour or so. I then had brain surgery for the insertion of a permanent shunt to drain the excess fluid. The results were immediate and nothing short of miraculous. I now walk normally, no longer am I incontinent and the dementia has cleared. I still have FM and am pretty compromised by that, but I do have my life back. I write this in some detail in hopes that it helps someone. I just cringe when I read the comments here about walking and thinking difficulties because I know what it is like, holding onto walls and using a walker and trying to remember from one moment to the next what I was doing. This will not be an answer for everyone, but I pray that some others can be helped as I was. I call myself the "Miracle Baby". My friends and family are thrilled to have me back."
 
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"If you have some interest and 'belief' in metaphysical ideas, you could try asking your guides and the "Universe' to bring you the information you need. To guide you to the doctor who can help you. This takes some persistence, but sometimes amazing things happen.

I love this comment Merida. I am amazed at what shows up in my life when I ask for help, looking for directions to guide me in my healing process. When I take a close look at what appears in the course of my day, the hints are there.
 

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