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Surviving and Thriving with Chronic Illness

External Communicating Hydrocephalus

Dr. Diana discusses external communicating hydrocephalus in EDS -- how to recognize it, how it is often misdiagnosed, and how to treat it!

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Hello Dr Diana

Thankyou so much for always informing us.  I went to a neuro eye doctor that unfortunately did not have anytime for what I had to say.  I am seeing a genetic doc to confirm my suspected EDS and external comm. hydrocephalus.  I have every symptom you mentioned on and off for years.  I am going spread awareness and share this info to the eds specialist (articles) and ask for Diomox.  I am extremely sensative to meds and I am a smaller person.  What dose do you recommend.  You said I should experience relief as soon as the next morning.  I have to say that when I watched you at the last convention standing.  I kept saying she is standing and still standing without moving her muscle pumps, is she going to sit?  I was so happy and amazed for you.  I hope this will help, I want to give it a try but I am alittle nervious because of the pots and dehydration or fluid removal.  Hugs to you too:)
Lynn

Hi Lynn! I’m so glad that I’ve “come out of the closet” and shared my symptoms. It’s allowed wonderful people such as you start to put the pieces together. I’m afraid I can’t tell you what does to take (I don’t know you, and everyone is different). I fiddled with my dosage for months and landed at about 125 mg in the morning and again in the early afternoon, then 250mg at night. I will tell you that the slow release form is NOT the form to take. I was also a little concerned about my OI, but it is a fairly mild diuretic & didn’t bother me. I do know of patients who have had more trouble with OI, at least until it starts to correct some of the CAUSES of the OI. Remember, we’re going after the cause, not the symptoms, OK? Let us know? Big hug…

Diana, I laughed so hard at the carbonated beverage blooper, I got an occipital headache!  grin)))

EhDoDomething—That’s a good one, my friend! HA!

My son Nicolas suffered from ME/CFS for years and had all the symptoms of external communicating hydrocephanlus, headaches since 5 years old, probably due to prefrontal head injury from being run over my a car at age 4 as I see now, at 12 years old had pots, orthostatic pressure, was bed ridden for more than a year, had alzheimer like brain function, poor mobility etc etc, was ME/CFS diagnosed and treated and is well today but has some high blood pressure.  During his ME bout, his skin was acutely hypermobile, he would stretch it llike glue and no one explained or remarked upon it. 
Then my daughter was diagnosed with EDS, while there is prevalent tmj in my siblings and one side of family and have brother and nephew with kyphoscoliosis, undiagnosed as but thought until recently to be dystonia with muscular dystrophy.  It all now makes sense.
Your comments regarding CFS amaze me and I beg you to refer to me more information on this, for occasionally now my son still gets his in between eyebrow headaches, acute neck pain and hi blood pressure.  While ill, I gave my son Blasi electrolyte treatment when ill following his physical therapist argument that he had all the pressure points of fibromyalgia, intravenous vitamin C shots to combat his multiple infections (mitochondrial permeability) and bineural noise treatment for brain activiation and he came alive and starting moving again. 
My daughter has restless sleep, irritable bowel and joint pain.
Thank you for sharing your amazing research and findings with us.
In his most recent brain MRI, they found many abnormal results of high and low brain areas.

Hi Stephanie, Did you get Part 2 yet? Lots of info there! And your kids sound like they’re living “The Driscoll Theory”! Please stay tuned for the blood work registry I have coming up. I am already onto the next step, but would like to see this issue reflected in our blood work first (scientific method)! Hang in, my friend. smile Diana

Dr. Diana,
I have EDS, POTS and a mast cell disorder and all the syptoms of external communicating hydrocephalus. My headache was relieved after a lumbar puncture for 15 hours.  I have gone to MANY MANY doctors, most are no help at all. I filled out the info to see Dr. Clair Francomano like 3 weeks ago and still have not heard back and they said they were booked until October/ November! This daily headache is beyond horrible and I can’t get anyone to listen to me about The Driscoll Theory or let me even try Diamox. I don’t know what to do, do you know of any other doctor in the USA that knows about this and will listen? (I spent all last week at the Mayo Clinic) I really want to try Diamox but doctors tell me I don’t have high pressure and that I have symptoms of low pressure because my neck hurts and gets tight. I tried to tell them why but they won’t listen to me :(

Hi Schnoogals, This is a question I hear every day! Honestly, it’s a matter of doctor-shopping. We started a thread for good doctors that may help (on the forum). It may be easiest just to ask your primary for Diamox to prevent altitude sickness for your trip to the mountains (you can always cancel your trip. That is VERY tongue in cheek, my friend). I’m working on publishing a Diamox trial that was used for EDS and for MS patients (with an anesthesiologist as a co-author). That may help. Dr. Rigamonti in Baltimore is looking it over now. I’ll let you know if he sees the logic. He is THE doctor with hydrocephalus. It’s hard to believe this was missed on us for so many years. It can be hard to be a pioneer! Oh, one other thought. Many doctors who work with AUTISM prescribe Diamox. It sounds crazy, but autistic children often deal with this, too. That is the doctor who prescribed it for my non-autistic son. He was perfectly comfortable with it. An avenue worth trying? Don’t give up! smile Diana

GREAT suggestions! Thanks! I am so lucky I found this website because all my doctors had no clue what was going on with me. I knew I had POTS and EDS but I was still pretty healthy until I got a virus and then out of nowhere, horrible pains from head to toe and flushing everywhere. If you had never done this research and made it so available to us, I’m affraid I would have never known about the mast cell disorder and never would have gotten the medicine that helps me so much. You have changed my life. I just wanted you to know that you’re kind of like my hero smile
-Kat

Diana,  I will be seeing my PCP soon.  Got a question relative to this. I’ve written you a note here .... and if I din’t find I can do that (I’ve had access issues before), I will PM you in Inspire.

EhDoSomething

Hi Kat,
Oh, that is wonderful to hear, my friend. My research has not stopped (yes, there is MORE!) and I am setting up trials to start soon. Your comment warmed my heart. smile Diana

Hi EhDoSomething, That sounds like a great plan! I found a little glitch in my ability to PM patients (they’re working on it now). I hope it works for you!! smile Diana

You mention CSF coming out the nose.  Is it possible it can go into the ears?  I have MS and for 7 yrs (when my health started to deteriorate) i’ve had Extreme itching in my ears.  Sometimes it feels like something is moving in them.  Also if i gently scrape a fingernail along the outside of my ear canal light yellow “powder” comes off.  Could this be CSF passing through ear wax and coming out my ear and drying?  I do not suffer from non stop headaches, just what i would consider normal headaches.  My left shoulder is “frozen”.  My GP and alternative docs do not care about the frozen shoulder or the extreme ear itching and ear “discharge”.  I am wondering if i should tell my alternative doc that i want to try Diamox?
Thank you for your videos

Just rewatched this video and you mention ears!  Also as a child i had Extreme motion sickness every time i got in a car.  Not so bad now but does still happen occasionally.  I do however feel nauseas regularly when at home, going about my daily activities.

Hi Diana,

Would you say that hydrocephalus is a result of chiari? I am suspecting that my daughter has both even though we were told she does not by a orothopedic spine surgeon.

Diana, was the glitch on Inspire ever fixed?

I think you mentioned that your period came back after beginning Diamox?  My period completely stopped at age of 36 with out any prior symptoms.  My doc said “Don’t worry about it… it’s normal at your age to have irregular periods.  Mine was normally right on the hour and I never missed.  I thought it might be sheehan’s because i had a uterine rupture with my second daughter.  I was recently diagnosed with EDS.  Diamox does help so much!  I can see an immediate change in my eyes.  My question is should i continue to search for a reason for my premature ovarian failure (not Fragile X)?  I am now 45…. My daughter also has EDS3 and although she’s only 15 i would like to understand what happened for her.  Any suggestions would be helpful.

I’m so sorry, everyone—I never saw some of these posts! Nancy, absolutely, we can get CSF leaks through our ears. I hear about this fairly often, in fact. I often wonder if that is why some of us have episodes of extreme vertigo that seem to come and go for no apparent reason! Diamox took care of that for me, thankfully! wink

Stephanie, I would encourage you to join the forum on this site! We discuss CSF fluid dynamics on a regular basis! Thank you so much for your comments. Hang on—it sounds like you, too, have been through quite the ride. Hugs…

Jackie, I think hydrocephalus can be a CAUSE and a RESULT of chiari. A “true” Chiari can block the CSF flow. External communicating hydrocephalus can cause a Chiari (a sort of ‘corking’ of the CSF flow—often called ‘Chiari Zero’). My son and I were encouraged to get cervical fusions, Chiari surgery, and brain shunts! We were lucky enough to correct this with no surgery—just the use of an 8 cent pill. This is one reason I wanted to share this with as many people as possible! I think that some of us DO require these surgeries, but my gut tells me that many of us may be able to avoid them, and the comments from patients and their doctors confirm this. Thanks for the question!

Kandyson, Did your periods return? Are your symptoms of hydrocephalus (and perhaps Chiari relieved)? I would recommend that you work closely with your doctor on this, but I betcha’ your doctor will feel less pressure to evaluate this further if indeed, Diamox took care of it. wink

Hi EDS99, It is ‘dog-eat-dog’ out in the medical community sometimes! I’ve created a forum here for you to find me, as Inspire deleted most every thread involving my theories! Yikes. As crazy as it seems, when I brought forward the apparent mast cell involvement, a mast cell specialist told me there was “absolutely no way that POTS and EDS were related to mast cells.” As shocking as it sounds, he refused to see me or my kids because I felt that we needed more mast cell help. Two months later, he released an article saying that POTS is certainly related to mast cell disorders, and he was actively seeing patients. Then I was removed from a mast cell forum. It’s hard to think that innovation could be stifled when we are looking for answers to our dreadful conditions, but sometimes it’s not easy being a pioneer! You are welcome to join the forum here! wink There are some exciting results of the research coming out ASAP. I’ll look for you on the forum! Big hug…

Thanks! My period did not come back but it’s been a LONG time.  At one point they thought i may have Sheehan’s because I had a uterine rupture during my second birth.  The diamox has worked WONDERS!  I am no longer having wierd spells of vertigo and electrical headaches. (Sounds wierd).  I never had hot flashes or other signs of menopause.. My daugther also has EDS III.  THey aren’t really worried about it… but i am just curious because of my daughter.

Thanks so much for replying!

Hi Kandyson, It sounds like it would be smart to work with your doctor about the abrupt ending to your periods. I wouldn’t feel confident enough to say that hydrocephalus was DEFINITELY the cause, although like you mentioned, my period came back after starting Diamox (mixed blessing!). Your doctor will let you know when you can stop looking, I’m sure! My daughter just turned 17, so I understand your concern. My daughter takes Diamox and her head circumferences from birth indicate that she has dealt with it all of her childhood. :( We are keeping an eye on her hormones and thyroid functions, as well as ACTH and cortisol production. That may be worth considering for you both, too. wink

Is there anyway to get a transcript of the videos? This would be very helpful when discussing the topics with family or doctors, as Dr. Diana uses “normal” wording, which makes it easier for non-medical individuals to understand.

Thank you!!!!

How is Diamox different from other diuretics?

Hi Dr. Driscoll - My son is 23 years old and a final year medical student in Jamaica in the Caribbean. He was diagnosed with EDS when he was 13 years old and this diagnosis was confirmed by Dr. Mark Lavelle in South-bend Indiana (he also has EDS). Jason has had surgery to stabilize his shoulder, gall bladder removal and many cervical spine epidurals for pain relief. He suffers from migraines but recently an onset of headaches that he describes as stabbing on the right side. This led to a CT scan and a MRI (no comparative study was ever done on the brain) of the brain and has been diagnosed with communicating hydrocephalus. A consult with a local neurosurgeon indicated that there is no pressure on the brain and as such there is no need for surgery. He does not believe that this condition is related to ESD but I had my doubts and hence my research where I found your article. He has an appointment with a neurologist in Miami for pain control (referred by the neurosurgeon in Jamaica) next week. I am not sure if this Doctor understands EDS or the connection to hydrocephalus. Is there an e-mail address where I could ask Jason to contact you directly? He is currently on vacation (just taking a break) so I thought I would make the initial contact with you and hand over to him for further communication. Many thanks.

Dr Driscoll
My lumbar puncture last April (2014) showed a low opening pressure of 5.5 - I had headaches, but they were bearable & I assumed part of my POTS. Around the time of my lumbar puncture, I started taking fludrocortisone. A couple of months afterwards my headaches disappeared apart from the occasional.

In December last year, I developed very severe positional headaches - worse when I stood up, lessened when I lay down. Also had very bad vision problems (blurry, stars, floaters, starburts with light, sensitive to light), developed tinnitus (could hear a loud heartbear or ringing), have lots of nausea and vomiting, developed neuropathic symptoms in hands and feet (burning, numbness, tingling etc), developed vertigo and felt drunk a lot and had terrible cognitive problems (worse than with POTS) and I can’t read anything for more than a minute or so.

At an ENT consult, the doc shook my head REALLY vigorously as part of tests (couldn’t find anything obviously wrong) and the next day, I could barely get out of bed and started dripping clear salty fluid from my nose.

I have some hypermobility and am seeing a consultant next month to assess for EDS, as I have many signs.

What I would like to know is: could I have external communicating hydrocephalus even though I had a low LP opening pressure last year that was suggestive of a spinal fluid leak and low CSF pressure.  Or can CSF pressure bounce from low to high etc. Feel really confused and no doctor has been any help.

Can you give some advice for me to ask or push for at next docs appointment. Last neuro appointment exercise and CBT was suggested!!

Relevant facts:
Confirmed dx POTS; confirmed hypermobility (in some joints); possible EDS
Feb 2014: started taking fludrocortisone
April 2014: low LP opening pressure (no major headache afterwards)
July 2014: fell down flight of stairs and fractured coccyx
Aug 2014: switched from fludrocortisone to Midodrine
Aug - Nov 2014: POTS symptoms stable
Early Nov: Blackout & split open back of head (needed gluing)
Mid Nov: started with 6 weeks recurrent throat infections and hacking cough
End Nov: fell down flight of stairs (again), badly bruised arm, hip and top of buttocks
Dec 2014 - Mar 2015: unable to attend college or do much due to headaches, vomiting, cognitive problems etc

Thank you

<h1>ED治療</h1> <h1>勃起不全</h1> <h1>早漏</h1> <h1>精力剤</h1> 
<h1>ED治療</h1> <h1>勃起不全</h1> <h1>早漏</h1> <h1>精力剤</h1> 
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