"Suffering the Slings and Arrows of Outrageous Fortune"

I have been meaning to post about the Driscoll Theory for a while now and just haven’t gotten around to it. However, I think it could make a huge difference in my daughter’s life and the lives of others, so I feel led to get the word out.

Dr. Diana Driscoll is an optometrist who also suffers from EDS and POTS (and other junk). She has used her medical knowledge to piece together information about her own condition (and her childrens’) and has shared that with the rest of us. I will attempt to summarize her theory, as I understand it, but I encourage everyone to go to Dr. Diana’s web site and check it out for yourself. (Go to the articles and handouts section of her website and download the article. You can also watch a video where she explains part of the theory in person.)

Anyway, many people with EDS also have ugly neurological symptoms – headaches, dizziness, fainting, tachydardia, light and sound sensitivity, nausea, fatigue, brain fog, aphasia, blurred vision, anxiety, and on and on. Many of those symptoms are POTS symptoms. Many of those symptoms are Cranial instability and Cranial settling symptoms. Also, there are some EDS patients who develop MS, strangely enough.

POTS is experienced by about 1/2 of EDS patients -in fact, orthostatic intolerance is a minor diagnostic criteria for diagnosing EDS. The theory is that the blood vessels are ‘floppy’ due to the defective connective tissue and aren’t able to act on the brain’s signals, resulting in orthostatic intolerance. That assumption could be true in some cases. However, Cranial Instability symptoms definitely overlap with POTS symptoms – when the brain stem is being ‘squished’ the body just doesn’t work quite right.

In the last 10 years, the Chiari Institute has discovered a definite link between EDS patients and Chiari/ Cranial Instability/ Tethered Cord, explaining many of the neurological/POTS symptoms EDS patients experience. In fact, the Chiari Institute automatically screens their patients for EDS now. Instead of being ‘impossible’ to have both EDS and Chiari (there technically is a 1 in 25 million chance of having both), the stats now tell us that 1 out of 15 Chiari patients also have EDS. This is because a Chiari Malformation can be acquired, not just congenital, through cranial instability, a tethered cord pulling the brain down, lumbar punctures, etc.  The processes created by defective collagen can result in a Chiari Malformation or, at the very least, crowding of the hind brain which result in the Cerebrospinal fluid being blocked, causing a plethora of symptoms. This blockage of CSF flow is believe to be the main culprit for all of the symptoms experienced.

The treatment for POTS is to drink lots of water, increase salt intake and  medication if the home remedies don’t work. POTS symptoms are extremely debilitating and don’t always respond to treatment, particularly in EDS patients.The treatment for Cranial Instability is cervical fusion. The treatment for Chiari is decompression surgery. Unfortunately, these surgeries often do not have ideal outcomes for EDS patients – EDS folks are always more complicated and often get only temporary relief from these serious surgeries.

This is where the Driscoll Theory comes in. Basically, she has found a correlation between low levels of high intercranial pressure and EDS patients who eventually develop POTS. The thought is that CSF builds up above the brain and the pressure actually pushes the brain down, creating the POTS and Chiari symptoms, in general making the person feel horrible and wreaking havoc in their lives. This CSF blockage just gets worse over time and will eventually result in brain damage – or even MS. Lumbar punctures would only make the symptoms worse. Decompression surgery and even fusion would only make it worse.

The awesome news is that a simple medication called Diamox can immediately start improving the symptoms. It is a mild diurectic that reduces the intercranial pressure and lets the brain float properly. The poor results EDS patients often get with the neurosurgeries I mentioned above can easily be explained by the Driscoll Theory – it could radically change the course of treatment for EDS patients experiencing these symptoms. Dr. Diana’s initial study found a connection between EDS patients who have this symptomology and who had externally communicated hydrocephalus as infants. This has traditionally been considered a benign condition and not investigated but it could be the clue to intervening earlier in these childrens’ lives – before they experience such debilitating symptoms. She is doing an additional study to further investigate this connection.

This new information gives me so much hope that we can avoid surgery for my daughter; I can’t say how excited I am by this prospect. Trying not to get too excited but I now actually have hope – I really don’t love the idea of my baby having several neurosurgeries. I really, really don’t love the idea of those surgeries failing and doing nothing to help her symptoms! I was resigned to surgery, but now I have hope that it won’t be necessary and, if it is, we can only do what is absolutely necessary instead of blindly going forward.

Now, I know I am vastly oversimplifying this theory – there are components I didn’t even mention. It also includes Mast Cell Disorder and CCSVI and other stuff that complicate EDS. I have picked out the parts that apply to us the most. I really don’t know about CCSVI in regards to my daughter; my gut tells me no. I am mostly convinced at this point that she could have Mast Cell Disorder. (Mast Cells are created in the connective tissue. That right there is enough to convince me!) That treatment is quite simple as well – zyrtec or zantac – so I will be investigating that option for my daughter. There is information on the EDNF website about a study regarding EDS, POTS, and Mast Cell Disorder, so this is an amazing time for EDS research!

So, with the Driscoll Theory in hand, we will go to the Headache Clinic at Cincinnati Children’s and politely ask if we can try Diamox to see if it helps. I figure it is a quite benign medication, so, if she is going to be put on any meds, why not Diamox? Something that could help us avoid surgery all together or even temporarily would be amazing. Heck, I will even take something that just makes Em’s headache better for a few minutes. She has no life right now due to her headache and the thought of a simple little pill restoring her life, well, that would be an absolute miracle!

I encourage anyone with EDS to go to Dr. Diana’s web site and check out this theory and consider if it applies to them. I don’t think Diamox would make any difference for someone with ‘regular’ POTS but for EDSers, it is definitely worth thinking about.

Click here to read about our success with the Driscoll Theory: The Driscoll Theory and how it helped us…

Advertisements

Comments on: "The Driscoll Theory and how it might help us…" (8)

  1. Diana Driscoll said:

    Hello, my friends! I just happen to stumble across this blog comment and wanted to thank you, Beth, for posting this!
    I’m trying to wrap up Part 2 of the Theory which explains the results of the studies so far, and how EDS, Mast Cell Disorders and CCSVI are likely all linked. Because many of us go on to develop multiple sclerosis (where I was headed), my hope is that proper treatment as early as possible will avoid that progression. I believed I dodged that bullet just in time!
    I have a gathering of M.S. researchers who will be working with me on further studies, as they, too, have had positive results with this treatment in pilot studies. I can hardly wait to show you the pieces of the puzzle, and how many of the pieces were out there, but not yet put together to show the entire picture. We are in exciting times, my friends. Thank you for your support. Gentle hugs… 🙂 Diana

    • Hey Dr. D,
      Thanks for dropping by! We got a script for Diamox yesterday and Em took a baby dose last night. Her headache isn’t completely gone but it is a 2 instead of the normal 8 she has lived with for 2 years! We will try a slightly larger dose tonight and see if that doesn’t do the trick completely. I am grateful to you for sharing this information with us and being so supportive through out this journey. I will post more here and at prettyill.com when I get a chance today. Between the diamox and the mast cell treatment, I feel like we have been given a miracle!
      Beth

  2. I watched her video and mentioned it to my neuro doc & he told me “it’s not the route I was planning on going but it can’t hurt if you want to try it.” He wanted to put me on muscle relaxants after we tried Gabapentin (gave me horrid chest pain)….anyway I took my first pill and after about 45 min my headache was about 50% better…MY FIRST PILL :)) I’ve been on it now for a few weeks & the pressure in my head & the pain in my neck & shoulders are gone for the most part. It’s wonderful!!!! My neurologist was shocked and said laughing that “I guess I know what to do IF I ever have another EDS patient”.

    Thanks Dr. Diana, you’ve been a saviour:))

    • I am so glad to hear this! And so glad your neuro gave it a try! I cannot imagine where my daughter would be without Dr. Diana – she is our hero!

      Thanks for sharing and congratulations on helping yourself and other EDS patients by educating your doc. (As Dr. D says: We will change the world, one brain cell at a time!)

  3. Hi can this work for symptoms from cranial instability? I don’t get headaches but I get extremely dizzy. Thanks!

    • You ask a good question and I don’t have a complete answer for you but I will answer as best I can – keep in mind that this is a lot of my own personal opinion, so take it for what it is worth…

      First of all, if you have clear and pronounced cranial instability, you may not be helped by the Driscoll Theory. However, if you have symptoms of cranial instability but no clear evidence, parts of the Driscoll theory could help you. If you have no headache, it is possible that trying Diamox would not help you – it would only be helpful if you actually have the type of hydrocephalus (externally communicating) that is mentioned in the theory. Simply put, increased intracranial pressure would be causing the symptoms and the symptoms would decrease if the the intracranial pressure was reduced. So, you would need to take a look at all of the symptoms and decide if it were worth a try. Assuming you could get a doctor to allow you to try it.

      If you have mast cell symptoms, a trial of zyrtec and zantac could reduce symptoms, one of which is dizziness but there are a bunch of other symptoms that could be part of it. The way I see it, all of these symptoms (of autonomic dysfunction, of cervical instability, of mast cell disease) all overlap so much that it is hard to know exactly where they are originating. So, it makes it complicated.

      Personally (and this is totally and completely my opinion) I think that the majority of EDSers probably have some level of cervical instability – some may benefit from a fusion but there are so many who end up with more problems from a fusion. Any surgeon who tells you he can promise with total certainty that you will get better with a fusion, is lying. It may be necessary, but it is a serious step to take. I think there are things, like increased intracranial pressure and mast cell disease that we do not fully understand but explain a lot of the symptoms. It just seems prudent to look at them BEFORE trying a fusion.

      So, after all of that, I can’t really give you a straight answer. I would advise you to get on the forum at prettyill.com and to watch the videos that Dr. Diana has made, explaining the theory. Her theory is not available on the internet now except in the book, so that makes it harder for you to get the info but the videos would be helpful for you and you could ask any questions you might have on the forum.

      Good luck and hope that helped a little!

  4. Ellen Waverka said:

    My daughter has been significantly impacted by POTs for over 6 years after a bout of viral meningitis and was recently diagnosed with HEDS and I am suspecting MCAD too. Is there a typical dose of diamox to try or suggest to any of her physicians? Although she has been seen/followed at the top Children’s hospital, we have not found a great care team.

    • Sorry about your daughter’s diagnoses – I know how hard it is to deal with them all! It is a constant search to find good doctors who can help, so you are not alone there either! Regarding Diamox, does she have the base of the brain/ pressure type headache? And the other symptoms that go along with increased intracranial presssure – like nausea, light and sound sensitivity? If those symptoms sound like what your daughter is experiencing, Diamox might help. But it wouldn’t help unless she has increased intracranial pressure. You might read some of my other posts about our experience with the Driscoll theory and Diamox: http://wp.me/p1mpA8-nI and http://wp.me/p1mpA8-48 are a couple that might be helpful for you.

      Good luck – hope I helped a little and that you get the help your daughter needs!
      Beth

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

%d bloggers like this: