Dr. Diana discusses external communicating hydrocephalus in EDS — how to recognize it, how it is often misdiagnosed, and how to treat it!
Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.
Dr. Diana discusses external communicating hydrocephalus in EDS — how to recognize it, how it is often misdiagnosed, and how to treat it!
This website was created to inform, educate and brainstorm with fellow patients and doctors. The content should not be used as a substitute for professional medical advice, diagnosis or treatment. Readers are encouraged to confirm all information with other sources and their physicians. The creator of this site will not be liable for any direct, indirect, consequential, special, exemplary, or other damages arising from the use of this website.
Twitter: @prettyill
“Dr. Diana will always hold a very special place in my heart for her selfless devotion to helping everyone, not just the Ehlers-Danlos community. I hate to think what my life would be without her insight and guidance.”
-- Chris Gross
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… Read more »
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… Read more »
Diana, I laughed so hard at the carbonated beverage blooper, I got an occipital headache! :-))))
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… Read more »
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. 🙂 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… Read more »
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… Read more »
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… Read more »
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. 🙂 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!! 🙂 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… Read more »
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… Read more »
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! 😉
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,… Read more »
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. 😉
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… Read more »
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… Read more »
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… Read more »
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… Read more »
Hi Diana I have looked at your video several times and found it really helpful. Yo are a great commentator and communicator and watching you is a therapy in and of itself.:) I have just had an MRI – I have restless legs which have driven me crazy for years and the new doctor i visited who is a neurologist doctor an MRI just in case. I was shocked when i found the results showed moderately express external hydrocephalus. (lateral Ventricles show asymmetry but are not enlarged and the and basal cisterns 3 and 4 are not enlarged either. But… Read more »