"Suffering the Slings and Arrows of Outrageous Fortune"

The Driscoll Theory

The Driscoll Theory, authored by Dr. Diana Driscoll, an EDS patient herself, is a groundbreaking explanation of why some EDS patients are so ill with neurological and autonomic symptoms. The ‘real’ title of the theory is:

The Role of External Communicating Hydrocephalus, Mast Cell Disease and CCSVI as the cause of POTS (Postural Orthostatic Tachycardia Syndrome) in Ehlers-Danlos Syndrome

Those of us who have been helped (blessed) by this theory, are more than content to refer to it as ‘The Driscoll Theory’. Actually, at my house, we don’t think of it as a theory at all – it is simply proven fact to us. We were convinced that my daughter’s neurological and POTS symptoms were caused by cervical instability and the only treatment was a fusion. We were fortunate to find this theory and have been able to avoid surgery – my daughter is benefiting amazingly from finally having the proper treatment and is feeling so much better these days. I am dedicated to sharing this theory with as many EDS families as possible.

It is a hefty, complex theory so I will only attempt to hit the highlights here:

  • External Communicating Hydrocephalus  causes subtle levels of High Intracranial Pressure, often from birth. This results in a constellation of neurological and autonomic dysfunction symptoms that can manifest at any age. Poor CSF drainage resulting from defective collagen causes CSF to build up on top of the brain and pushes the brain down, putting pressure on the brain stem and other structures. This downward pressure blocks CSF draining out of the brain and creates a constellation of symptoms – base of the brain, pressure headache; dizziness; tachycardia; fainting/near fainting; nausea; blurred vision; numbness in the extremities and so on – in short, symptoms of Chiari, Cervical Instability, Brainstem compression and POTS. Diamox, a mild diuretic, can quickly reduce the build up of CFS and relieve the debilitating symptoms overnight. Even if cervical instability requires a fusion or a Chiari Malformation calls for a decompression, using Diamox to reduce the CSF pressure above the brain could make those surgeries more successful.
  • CCSVI (Chronic Cerebrospinal Venus Insufficiency) Stenosed (narrowed) veins in the cervical region result in poor blood and CSF drainage, contributing to the cycle of building pressure above the brain. Angioplasty can open the narrowed veins and restore proper drainage. This is a big area of research in MS; EDSers are at increased risk of developing MS so the connection is intriguing. [Edited to point out that the veins of EDSers are fragile and CCSVI treatment is problematic, although stenosed veins may indeed be a problem. No one should run out and seek CCSVI treatment. It is an intriguing connection but available treatment is not necessarily the answer.]
  • Mast Cell Disease is at the root of the Driscoll Theory. In mast cell disease – mastocytosis or mast cell activation syndrome – mast cells degranulate and release a host of toxic chemicals throughout the body.  Mast cells can hide all over the body – in the gut, in the brain, in the bladder, etc. When they are in the brain, they can affect the production of CSF and cause autonomic dysfunction symptoms. They can damage blood vessels, causing them to be ” ‘leakier’ and weaker” than they already are in EDS patients. In the gut, they cause serious GI issues, including food sensitivities that mimic gluten intolerance and more. Flushing, tachycardia, fainting/near fainting, abdominal pain,headaches, fatigue are symptoms of mast cell disease and, not coincidentally, are also symptoms of POTS. Treatment includes H1 and H2 histamine blockers, like Zyrtec and Zantac. A mast cell stabilizer like Gastrocrom is the next line of treatment. Some researchers believe that POTS = mast cell disease (there is certainly a connection with hyperadrenergic POTS); other doctors are successfully treating IBS with mast cell stabilizers. Mast cell disease is a big area of research for the EDS community and offers a very interesting avenue of investigation.

If you would like to download the whole theory, go to Dr. Diana’s web site. You can watch videos in which Dr. Diana explains portions of the theory and answers questions, or go to the articles and downloads section of her web site to download the document and other articles. I encourage everyone with EDS, POTS and/ or neurological symptoms to check out this theory and discuss the treatment options with your doctor. It is truly groundbreaking and the EDS community stands to benefit in a big way from Dr. Diana’s research.

[Also edited to say, that the printed version of the theory is unavailable and some of these links are broken because of the actions of some unscrupulous people. If you are interested in learning about the Driscoll Theory, please go to prettyill.com and watch Dr. Diana’s videos. You can get so much info from her videos…I suggest you start here or  here for information about the theory or here to understand who Dr. D is as a patient.]

You can read our experience with the Driscoll Theory, here and here or use the tag cloud to find posts discussing it.

Comments on: "The Driscoll Theory" (40)

  1. Darlene Lemay said:

    My daughter has POTS. She suffers from headaches so much:(

    • Hi Darlene,
      I am so sorry to hear you daughter is suffering – I can empathize! If your daughter has EDS, as well as POTS, I definitely encourage you to check out Dr. Diana’s theory. If she doesn’t have EDS and just has ‘regular old POTS’, it won’t help, but the theory is groundbreaking for EDS. Treatment with Diamox and Zyrtec and Zantac has been miraculous for my daughter, although it is just a bandaid on a serious problem. It is scary to see a child so ill!

      Good luck – and if you have any questions, I would be happy to try to help!

  2. Debbi Sprang said:

    I would love to talk with you Beth!!! My son is on almost all of the histamine blockers and mast cell stabilizers. The only treatment we are lacking is diamox… My son now has brain atrophy and Dr. Diana even talks about this. I am having a hard time getting a doctor to listen to me about diamox. RIght now I know he would have to go off florinef, milodrine, and ddvap. I really think he has hydrocephalus at his worse he had 14 ml extra spinal fluid. This has caused huge cognitive issues… I would love to talk with you Beth to learn more..

    • Diamox made a world of difference for my daughter – as did the histamine blockers. Her life changed drastically for the better with zyrtec and zantac and benedryl. We are seeing a doctor at Cincinnati Children’s, hoping he can diagnose MCAS and maybe get her on gastrocrom. That is going slowing, but, I know from past experience that pushing and not giving up is definitely worth it. Keep pushing until you find someone to help! Let me know if there is anything else I can do for you! Good luck!

  3. Wow, Beth…. Thank you for your kind words. I hope it is a huge help to many of us (including Darlene — Darlene, I have a “symptoms checklist” on my website under “Articles and Handouts”. If you can fill it out and shoot it back to me, it can give you an idea if your daughter’s headaches may benefit from Diamox. Please remind me why you’re sending it in, OK? Beth, I won’t go into great detail here, but briefly, my research is indicating that systemic treatment (USUALLY instead of angioplasty) will be the best option for our veins. It looks like most of us have vasculitis, which is ruining the valves in some of our veins SYSTEMICALLY — not just the “CCSVI” veins, so we have to treat it systemically). I’m working on that now. Many of us are prone to blood thickening and thromboembolisms, which can be a bear to deal with after angioplasty (remember, I had angioplasty — I am on a blood thinner, but still deal with pain in that treated vein. I’ll do a video on it soon.

    Hang in, my friend,
    😉 Diana

    • Hey Dr. D,
      Great to hear from you again! I have been thinking recently that I need to update/rewrite some of my earlier pages and I think this might be one of them. Honestly, I will have to go back and read it – I probably wrote it a year ago and haven’t looked at it recently. I will watch for your video and see about updating this page with your newest info. And, if there is anything that you see that you feel I misrepresent or get wrong, by all means, let me know! I feel like I have a decent grasp on the theory, but my lack of medical knowledge [other than my honorary EDS medical degree ;-)] makes me admittedly fallible.

      FYI, Emily is still doing beautifully and is continues to improve. The Diamox is doing its job and we are finally seeing an allergist/’mast cell expert’ to investigate MCAS. Not sure he is the expert we need, but I think he might be able to help. I am willing to give him a chance before traveling to an expert. I know that at least 95% of the improvement Emily has made in the last year and a half is due to you, so I remain deeply thankful to you!

      Hope all is well with and your family! Have a blessed Christmas!

  4. Hi Beth!!! That is GREAT news about Emily! You are doing a great job of explaining all of this, no worries there! You mentioned going to the mast cell specialist? You know me — I have to throw in my two cents… 😉 Some mast cell specialists will encourage a bone marrow biopsy. True — some people have an aggressive form of mast cell disease and need to have it ruled out. The good news is that we don’t usually show this. Soooo, I was careful to be sure all of us at my house never had the biopsy. As you mentioned, surgery or similar procedures can set us WAY back (I hurt my shoulder/elbow and had a ridiculously long set-back). If Emily still has GI issues, she won’t much longer! I figured out why we develop gastroparesis/constipation extraordinaire and I figured out how to EASILY treat this. I’m setting up trials for this, while simultaneously looking into MAKING this medication for us. Meanwhile, if we have horrible diarrhea, think mast cell treatment. Gastroparesis/constipation, think the “new medication”. Cool? I hate to sound melodramatic, but it changed our lives. I had 9 years of “it’s anyone’s guess what my GI system will do THIS week!” to normal, regular bathroom habits. I never even think about it any more. Ditto with the kiddos (jeez, they are now 15 and 16. Are they still “kiddos”?).
    The other GREAT NEWS, that I hope to be able to share soon, is how we stopped needing Diamox (until I flared with my injury — back on it I went). But there is hope that we won’t need Diamox for life! That was a surprise, even for me! Now, it took TWO YEARS to get there… 😉
    Lots of good stuff coming up! Yeah!!!
    Big hugs to you and Emily,

    • Wow, you have some great plans there. Great news about getting off Diamox and that new med for gastroparesis sounds amazing! Emily definitely is on the gastroparesis/constipation end of the spectrum. Now that the ‘C’ is being managed, ‘D’ can actually happen when she eats a food that triggers her, although rarely. I will be waiting with baited breath for your new med. We are seeing a GI doc – an endoscopy is being scheduled in the next couple weeks. Not fun, but necessary. I will be talking to the anesthesiologists about my concerns regarding mast cell activation. The GI is a motility specialist, so we will see what he ends up thinking. Just saw him for the first time this week, so I can’t judge how he will react to my ‘suggestions’ 🙂 But, we will just play that by ear and change docs if necessary, as always.

      We are seeing Dr. Abonia for mast cell, at Cincinnati Childrens. I don’t think he will want to do a biopsy. I think he has doubts about mast cell being involved. He is focusing on eosinophilic disorders right now, and is interested in working with GI and seeing the endoscopy results. I have my doubts that Em has EoE but I am ok with him being methodical and ruling things out -since the Z/Z combo is basically managing her worst issues. We really like him, so are willing to give him a little time to come around to MCAS. I know he has diagnosed other EDSers with MCAS so I have faith that we will eventually get there. If not, we will go elsewhere.

      [Now, if I may, I would like to point you to a particular post that I wrote about you before going to the Conference in August. I don’t mean to dredge up old injuries but I hated that you were not there and protested in my own little way. Check it out when you have time: http://wp.me/p1mpA8-hw. A couple of my post-conference posts heavily featured the Driscoll Theory, if you have time to check them out as well. Hope you get a kick out of the link I shared – you are our hero!]

      • Elaine said:

        My granddaughter goes to Cinci for her medical care. She has
        EoE and I have EDS classical. She has seen Dr. Abonia. I liked him right away (just the gramma, but I have had lots of experience with drs.). He is a brilliant man, you must listen well though as he does talk quite fast. I am very interested to see this connection with EoE and EDS you describe.
        Drs. here do not have a clue about anything EDS related. I have pulsatile tinnitus (where I feel my heartbeating in my EYE – over a yr. now). Neurosurgeon here is clueless and has scheduled me for five brain scans next week which I doubt will show the problem. I already know what the problem is thanks to Dr. Diana, but they won’t listen. One neuro I went to told she not “believe” in CCSVI and I should not be on diamox. Needless to say, her name now sits in my large pile of drs. I will never see again. This is a tough one for us especially with our little granddaughter. I only have one dr. that believes all of this but he can’t confirm this with anyone because no one calls him or they don’t have a clue. I have been very discouraged, while the pulsing continues in my eye constantly. My husband worries I will have a stroke and so do I but we can’t the specialists to look at the transverse sinus (jugular vein) – neuro tells me I will die on the operating table if I have an angiogram (he says because of the EDS) so he cant do angiogram and sees nothing on the last two scans I had. I told them to use a fundus camera but they sure don’t want to listen to me. HELP. Thanks for reading and “listening.” Maybe this will help someone else, who knows. But the link with EoE and EDS is something we have been suspicious of. Huey

        • Hi Huey!
          We really like Dr. Abonia too – he is pretty funny, he joked about Star Wars with us. He is adamant about a connection between EDS and EoE. I suspect it is connected to mast cell activation, but that is just a mom’s hunch and not based on any medical training at all! There is just so much they don’t know about EDS – so much to be discovered. It is hard but I guess we are fortunate that it is better than it was a decade ago and will continue to get better as time goes on… It still stinks right now though!

          Keep plugging along – just keep seeking answers, eventually you will get there. Thanks for sharing your story – you are so right that it could help someone else! Step by step, we will all get there together!

          Good luck!

  5. Hi Debbi, YES! Finding a doctor who is willing to give Diamox a whirl is a must! I’m beginning to see a subtle shift in the literature now — doctors are starting to recognize external communicating hydrocephalus, and how it can LOOK like brain atrophy… Heaven help me, I ARGUED with the neurologist at Mayo about my “normal” brain MRI — he said it was basically normal, except for some brain atrophy. Uh, no. I had a partially empty sella (squished pituitary) and EVERY SYMPTOM OF HYDROCEPHALUS. I just don’t think that evidence of high pressure — in the face of symptoms — should be considered “normal”. Oh, I wanted to tell you that florinef nearly blew the top of my head off. Well, almost… 😉 My headache became unbearable after four days of florinef. That is what convinced me I had hydrocephalus, actually. Just taking that away may help. It comes down to treating the CAUSE vs treating the SYMPTOMS. It is worth the fight to find a doctor to give it a try, I think.

    OMG, what happened to my head on my avatar?! Ha. Failed cervical stability surgery? 😉
    Hang in, my friend, and DO let us know how your son responds to Diamox.
    Big hug,

    • could your theory explain why Axert is particularly effective for EDS-induced migraine?

      • I am not familiar with Axert, but from a quick search, I think the answer is no. Diamox works by lowering intercranial pressure in people who have headaches resulting from increased intercranial pressure. It certainly appears that many EDSers deal with this, but migraines are also clearly an issue. I think increased intercranial pressure can masquerade as migraine or be misdiagnosed but if you really have migraines, I don’t think Diamox would help and if you really have increased intercranial pressure I don’t think Axert would help.

        If you have more questions about the Driscoll theory, you might pop over onto Dr. Driscoll’s website and ask on the forum. She is definitely more knowledgeable about the ins and outs of the theory than I am!

        HTH! Thanks for commenting.

  6. Oh, wow! You made a ❤ button?! I can't tell you how much that means to me. Thank you so much, my friend.
    Yes, it was disheartening to see politics (and egos) get in the way of shared knowledge. It makes everything more difficult, but I won't let it stop me.


    Thanks so much!!!
    😉 Diana

    • I made it and wore it on my shirt all weekend. I was even ‘recognized’ by one of my readers who had seen my post before the conference, and we were able to sit and chat.

      Wearing it was a small thing, but it made me feel like I could do something about a situation I very much disagreed with.

      Glad you were lifted up by it – remember there are many of us who are solidly behind you and who are eternally grateful to you. If there is ANYTHING I can do to help, just say the word.

  7. SA-MOOCH!!! 😉

  8. Brian said:

    Thanks for all this info. I find Dr Driscolls videos very hard to watch ( it’s her voice) and she doesn’t have detailed info on the web pages anymore. Your summaries are very helpful.
    I have just had confirmation that I have EDS and POTS, I have been Ill for many of my 49 years. I have known I have EDS for about 10 years and pots for a couple but it has taken years to get doctors to refer me to the right person to confirm. My 16 year old daughter has symptoms that look like POTS for a few years, Have sent your web address and others to her Paediatrician and he is looking into properly now.
    Thanks again

    • Glad I could help in some small way. It is hard to find doctors who can help. Keep pushing – there is hope!

      Thanks for commenting!

  9. Hi Beth and Brian,
    Yikes — my voice. Is it too soft, or just annoying? 😉 Hopefully, it’s not my jokes… Anyway, yes, sadly, I had to take down my book and most of my written theory (temporarily). There are a few ‘bad guys’ out there, who were using my theory to try to treat us in a way to make them $$, but sadly, not in a way to help us. While I work through that, I am moving forward in the research and protecting it as I go. There are some exciting things coming up, I promise! I appreciate Beth and her efforts to keep The Driscoll Theory alive in some form or fashion, as our propensity to develop hydrocephalus, and our great response from antihistamines, etc. helps us a GREAT deal. I am working on systemic treatment for our vascular issues right now. I’m so sorry to hear that you have been suffering for so long. I know personally how intense the suffering can be, as do my kids. I’ve devoted almost 10 years to this now, and certainly will not give up! I’d love to see you on the forum at Prettyill.com, if you can. There are so many great folks there who have ‘walked a mile in your shoes’, too. Sending you a big hug, as we work through all of the layers of this condition (and we have a lot of layers, my friend!). And Brian, should I invest in a new microphone? Thanks so much! 😉 Diana

    • Dr. D,
      I should have responded to Brian more thoroughly but I was on my Kindle and I just cannot ‘type’ well enough on it to do more than one or two sentences because I will make a mess of it! So, I’ll just answer you now:

      Aw, I don’t think you are annoying! I think you are sweet and generous and amazing and funny and a bit quirky (which I would recognize because I have been called the same and personally regard as a complement!). But, even if you were the most annoying person on the planet, you would still be tops in my book because of all of the help you have given to hopeless people like us!

      It is too bad that anyone would misuse your research – that is just wrong on so many levels! I know there are broken links in some of my posts, but I can’t bring myself to remove them, cause it makes me sad! (That and I am just a bit lazy about it)

      Hopefully, my posting about your theory is helpful and not harmful in any way. You let me know if it ever becomes a problem. I just couldn’t sit here after receiving such a miracle and not share it with others. I only hope and pray it has helped a few others! Anything and I mean ANYTHING I can do to help with the cause, I will do – you just say the word.

      BTW, thinking of and praying for you as you deal with your mom’s stroke – how are you all doing?

  10. You da bestest, Beth! No worries about anything on any level. And ‘quirky’ is one of the nicest compliments I’ve received! ha. The broken links make me sad, too, but research is moving ahead quickly, so the sadness won’t last! 😉 I’m in Austin right now for my mom — thanks for asking. Strokes suck (sorry). There’s no good way to describe it, frankly! But my mom is eternally optimistic, and we were still able to have some good laughs today. What an inspiration…. Big hug, Diana

  11. Hey there! I just would like to give you a big
    thumbs up for the great information you have got here on this post.
    I am coming back to your blog for more soon.

  12. Julie said:

    I think Brian must have meant that Dr. Driscoll’s voice was soft-spoken on the Part 1 theory video. I played it on my ipad and it was hard to hear but played it through my appletv device and was able to turn up the sound. Not annoying at all. Her voice and heart are a true blessing and gift.


    • I used to have the same problem with the sound – it was hard to hear, depending on which device I was using. Good point! And Dr. D is a gift to all of us! I hate to think where we would be without her!

  13. Aww, shucks, Beth and Julie, thanks so much. Yes, I’ve always been soft-spoken, and there IS a learning curve to these videos! But I also had a bit too much hydrocephalus, which makes it harder for us to speak up without exacerbating our symptoms. There’s a decent chance that I just annoyed the guy, though! 😉 SA-MOOCH!

    • It might have been you being soft spoken during those early videos, but, if I recall, it was different on one computer to the next. So, who knows! All I do know is quiet or loud, you are the best! 😀

  14. Marsha said:

    Hello Dr. D. and Forum,
    I have been on a very long journey which lead me to the EDS 3 diagnosis and discovering the Driscoll theory. First, I’d like to say BRAVO Dr. Driscoll for your tenacity in the face of your own challenges and secondly, I am starting to gain the respect of some nay sayers in the medical community now that I have a true diagnosis and I am no longer labeled a hypochondriac or a mental case. I need to advocate for my own trial of diamox and testing, including starting the H1-H2 histamine blockers.My problem is I don’t know where to start and who to ask. Nor do I know how much over the counter product I should try before assessing its success or failure. Do you have any info on dosages? I know Dr. D. is unable to provide specific information and can not treat however maybe the forum may have personal experiences with these medications and dosages as good starting points? I find going into an appointment armed with the information and directly asking for what I want lends a no nonsense approach. Either the MD will help or I keep looking for one that will work with me.

    • Hi Marsha,
      This isn’t Dr. D’s forum. You will need to go to prettyill.com, go to the forum and make an account so you can post. I definitely suggest you do so. I will try to answer your questions here, but I think you would benefit by getting input from others on the forum, so please hop over there!

      Zyrtec and Zantac: Of course it can be whatever H1 H2 combo you want, different people find different combos work better than others. I cannot tell you what to do or give you specific medical advice, but I can tell you what doses my daughter is on and you will have to make your own decisions. We started out trying the 10 mg Zyrtec and 75 mg Zantac and that helped a lot. We eventually bumped up to the 150 mg Zantac and the allergist then doubled her doses, so she takes 10 mgs of Zyrtec and 150 mgs of Zantac am and pm. We were initially prepared to have her try it for a few weeks, even a couple months before seeing any improvement, but it helped her right away – within hours. So, I would say you should try it and give it time before giving up if you see no improvement. It really is a trial and error kind of thing – you may need to play with brands, be careful of dyes and fillers, experiment with dosages. The whole mast cell thing is extremely complicated but your symptoms will help guide you in what is working and what is not.

      Advocating for Diamox: I wrote a post about this, that you may benefit from reading. It is called Diamox Pointers and you can find it here: http://wp.me/p1mpA8-nI

      I think you are spot on with your approach to dealing with a doctor: just keep pushing until you find someone willing to listen and help! That is exactly what we did.

      Hang in there and if I can help more, let me know. (And definitely get on the prettyill forum!)


  15. Virginia said:

    Dear Diane,
    I have been diagnosed w/Pots since 2001 and EDS by Clair in 2004 in Balt. I also have CF, migraines, and Fibromyalia. I don’t know if you are on this sight anymore, but will continue anyway. Over the years, I have been on many meds. and as many as 12 at the same time. (5 of them psych meds). I went cold turkey over 2 years ago. I stay in the house and just do the most easy things for the house. Life is boring. I have been an numerous clinical trials w/ NIH as well. Problem is anx. and rage at the most insignificat item. (At least my husband and son think so.) Any help or advice. Its mother’s Day Weekend and I don’t want to have and prob. with the relatives who don’t beleive and Don’t understand.Istayed home while thefamily went to my inlaws. Brother in Law is a psychologist and says all my problems or in my head and what color is the pain. I’m now being told that everyone in on pins and needles around me

    • Virginia,
      If you would like to try to talk to Dr. Diana, you need to go to prettyill.com and comment on the forum. She helped my daughter so much and that is why I blog about her theory – it isn’t a theory to us, because it is proven in my daughter!

      It does sound like some of what you are describing is very much like what Dr. Diana has talked about, so I do think you would benefit in hopping on the forum and telling your story. BTW, your symptoms are NOT in your head. I’d like to smack your BIL and make him see the truth for you! Do not give up, there are answers to be had for your symptoms! Dr. D is coming out with more research soon, so hang in there and definitely try to get on her forum – prettyill.com. Just make an account and post there.

      Thanks so much for commenting – if I can help you more, let me know!


  16. Lynn D said:

    Am curious about this hydrocephalus as for last 8 yrs at times, my head feels like its getting bigger or more tender and cant even wear the kerchief around head (its loose , just to keep ears warm and hair out of eyes when garden…), or glasses. Will try to track what starts it, if foods, or what doing or stress…Is right now starting again so will have to take off glasses. Gets worse by computer, possibly effected by hot days. Had a tendancy since child hood (and oldst son also) to get dizzy if get up fast (have low BP) , so learned to drink more water in summer and get up slowly. Have been getting histamine reactions lately as been Slowly lowering oxalates(almonds hi) (causing urine incont and pain), had thought those left when stoppd eating wheat.(tried to test what got stomachaches from as a kid, not celiac) .
    Ususally react to any meds put on and no diagnoses except borderline osteo and optic nerves need better health.

    • Sounds like you definitely fit the profile of the Driscoll Theory. Autonomic dysfunction, histamine reactions and headaches. Stay tuned here and at prettyill.com for the soon to be published revision of the Driscoll Theory. Dr. Diana is going to be releasing the updated and expanded version of her theory. You probably cannot find the first edition anywhere and that is because she had to take it down because some unscrupulous people were taking parts of it and using it wrongly and dangerously.

      But, in the next few weeks the new edition will be released. I will be blogging about it and will share links and information as I get them. I think it is something you would definitely will be interested in reading.


  17. Sharon Collins said:

    I am interested in discovering as much as I can about this disease (series of syndromes) my sister and both of my sons have EDS and POTS. My sister has orthostatic intolerance as I do. Neither has developed the differing types of seizures from epileptic. ( tonic clonic with aura, headaches spinal as well as pressure and sinus, periods of aphasia and strokes TIAs. One year ago I spoke of Hospice for me at age 44. I want to love and will help in any way. Blessings Sharon. Email sacollinsrn@gmail.com.

  18. Linda said:

    I am soooo ecited I found this page now I feel I have something to go to the Dr with I have been diagnosed wth EDS3 but for the last 2 years have felt like I have a brain injury. havent read all the info yet but this is filling me with hope. Thanks for putting this up I have shared it all over FB. How do I get to the symptoms checklist page. Thanks Linda

    • I am sorry for taking so long to reply – my computer has been down and I have struggled to keep up with comments. I believe the symptoms checklist page was part of a study and since the study was concluded a couple years ago, it is no longer available. But, you can purchase the updated version of The Driscoll Theory and share it with your doctor. I hope you find the answers you need! Here is the link: http://prettyill.com/the_driscoll_theory

  19. kim Koep said:

    My sister-in -law is suffering terribly with EDS . Also mast cell and auto immune difficency. She lives in Grants pass OR. Is traveling to Maine for treatment. Is there any holistic or Marajuana treatments to help her? Anything is DEEPLY Appreciated!!

    • I do know that some EDSers find marijuana to be helpful with pain relief, but it is not something we have first hand knowledge of. I would urge your SIL to seek a good, knowledgeable EDS doctor. There are treatments to improve quality of life – they may not be holistic, but it sounds like she needs good medical care. Perhaps once she is doing better, she can focus on more holistic treatments.

      I hope she finds some answers – thank you for trying to help her!

  20. Davina Davenport said:

    My son goes to the genetic doctor Wednesday 12/7. So I need to know what questions to ask to ensure she runs all the necessary test to see if he has a connective tissue disease or EDS. PLease help, I want it to be a successful appointment with an answer.

    From what I read he has many symptoms, and there are many cases patients have both. I’ve always felt there was something that was connecting all his aliments but couldn’t put my finger on it. I shared these concerns with his doctors and felt as if I was insane or worrying too much. But I had two older children who didn’t have so many different problems.

    He is 12 years old. He has been sick most all his life. We have seen the cardiologist, GI specialist, neurologist, and we have seen the same genetic doctor two years ago (before his EOE diagnosis). When he was a 9 months old, one of the other children had left the door that goes out to the carport open and he was in a walker that his wheels took him where ever he wanted to go. And out the door and flipped out on his head on the concrete he went. This event scared me to death. It was horrible, I just knew it had caused damage. With a CT scan and MRI – nothing showed except external hydrocephalus. We was referred to neurology, who said his opinion was my child had a big head and he was fine. When he was small, he was hospitalized several times on strong antibiotics, breathing treatments, and steroids. He was still breathing like a freight train when he was discharged. Then after about the 3rd hospital stay, our doctor took him off milk. Whola, his asthma symptoms and breathing improved greatly. He has ADHD and and at age 3 he was wound up like a rubber band, bouncing off the walls so even when he was sick he was full speed ahead. When he was was a toddler on up to about 4th grade, he was clumsy and feel all the time. He had bruises, and we had many ER visits. He would fall a lot of the time and not even catch himself and hit head first. I told the doctor something is wrong. So we visited a Neurologist who blew off my concerns. But done a MRI. It showed a aranoid cyst in the left temporal region and bi-lateral cyst in the choroid plexus. The Neuro doctor didn’t give me this info, I had requested a copy of the results. So I was asking him questions about the cyst, he said they had no bearing on any of my child’s passing out, falling spells,headaches, or his developmental delay. He did send us for a EEG which didn’t show anything. Our doctor sent us to Cardio for a stress test, and ekg. Stress test was fine except at the end he got really dizzy and felt like he was going to pass out. Doctor said he was fine. So when my son was small, I didnt understand why he fell alot and wouldnt try to break the fall, but after we went for the stress test where he got extremely dizzy, and body limp but eyes open but unfocused…he told me now that I am older when I feel dizzy I sit down and feel better but when I was little I didn’t know what that feeling was or that I could make it better. So he has less falling, “passing out’ episodes now. We went to the genetic doctor because his doctor thought maybe there was a genetic explanation. I’m not sure what test she fun but said he was fine. He started getting really sick, throwing up, nauseated. They sent him for a scope, which confirmed he had EOE. Since then we have been trying to keep him afloat. His stomach pains and fatigue is now everyday. He is 5’4 and weighs 95 pounds. Just about every food he eats hurts his stomach. He is skinny and I’m concerned hes not getting the nutrition he needs for his growing 12 yr old body.

    Questions : Do the cyst have anything to do with collagen? Here is a list of items he has been diagnosed with:

    ADHD, headaches, EOE, Acid Reflux, Chronic Asthma, Cyst, Exercise induced Asthma, Learning Disability with IEP on file, muscle pains, knees and ankles hurt sometimes especially if running, sleep apena, allergic rhinitis, palpitations, dysphagia

    What do you suggest I ask the Genetic doctor?

    • It certainly sounds like a visit with a geneticist is in order for your son. Hopefully this doctor is knowledgeable about EDS and connective tissue disorders, so you can get a reliable diagnosis either way.

      As for what to ask the geneticist, I would just type up a timeline with all of the information you shared here – dates,diagnoses,symptoms, etc – and take it with you. Even if the doctor doesn’t look at it, you will have it to refer to. Definitely point out his clumsiness, falls and bruising. Definitely point out his joint pains and headaches. Definitely point out his fainting episodes and how he learned how to prevent them. EOE seems to be a co morbid condition with EDS, so mention your concerns about his ability to eat. If the geneticist knows EDS, all of these will be red flags. Obviously, I can’t say if it is EDS but I would say you are wise to be concerned and push for an explanation of what the problem is – because your son clearly has something going on.

      If you don’t get a satisfactory answer – if the doctor isn’t an EDS expert and they blow off your concerns about EDS – I would urge you to try to get to an EDS expert. Not all geneticists are not fully up to speed on EDS and just because they say it isn’t EDS doesn’t necessarily mean they are right.

      Good luck – you are doing a great job advocating for your son. Hang in there – I know it is tough but you will find answers.

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