Dr. Diana Driscoll With an Exciting Ehlers-Danlos Update

What a journey this has been! Although a very challenging time, I feel incredibly blessed to know so many others on the same path. Please know that you help me, likely much more than I help you!

I wanted to reach out to those of you who suffer from POTS (or any autonomic dysfunction). This has been the most difficult aspect for most of us to deal with, and those of you who know me, understand. The symptoms can include the inability to stand beyond a few minutes, tachycardia, digestive issues, poor temperature control, anxiety, tremors, balance problems, twitches, myoclonus, fasciculation, memory problems, dizziness, fatigue, nausea, abdominal pain, weakness, hormonal fluctuations, difficulty breathing, and… well, why don’t we just stop there and take a breath?

We’ve also noticed that too many people with EDS also develop multiple sclerosis. Some of you are aware that a soft cervical collar at night time has helped us, as has Diamox (a diuretic that crosses the blood-brain barrier, taking fluid pressure off of our brains). This has been a consistent finding, but no one has been able to explain to me why it helps, and why it doesn’t eliminate the problem entirely, which has been a great source of frustration for many of us.

While researching EDS, M.S. and POTS, and considering my own symptomology and yours (and I’ll confess to being my own guinea pig, too), I’ve come up with a theory about what is happening, why, and what we can do about it. It’s a bit complicated to go into too much detail here, but understand that it all relates to sluggish flow of the CSF and our change in posture causing the brain to sink and rise, leading to chronic brain edema and a type of “normal pressure hydrocephalus”.

Because my son and I became symptomatic after a virus (although we had small symptoms that we could ignore prior to the viral attacks), I believed that the virus, or its antibodies, somehow began the cascade of symptoms. But because our children and my sisters and mother also had an interesting constellation of symptoms, I felt there was also a hereditary component to our poor CSF and/or veinous drainage from our brains.

As many of you know, Diamox has relieved much of the pressure on my brain, but now I will be having some imaging done to see if I have any blockages in my veins that could be opened (with a balloon or stent) to help with the condition. This is such a difficult condition to treat because it is dynamic (it changes with position, for example), yet medications are static (they cause one change).

I was beginning to show signs of multiple sclerosis, which is also not unusual for EDS patients. Research is expanding quickly and I will have some new information for you soon, I’m sure.

Until then, never give up.

About these ads

One response to “Dr. Diana Driscoll With an Exciting Ehlers-Danlos Update

  1. My 20 yr old daughter may be appropriate to your study. She has recent finding of CSF pressure of 38, POTs, cardiogenic syncope, EDS, many joints dislocating so with POT and that wheelchair bound, S/p tethered cord surg, s/p occiput to C# fusion, gastroparesis, GERD, IBS, and quite a number of other issues that make me wonder about MS tho MRI neg. My e-mail mlittlemd@yahoo.com

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s