Dr. Diana Driscoll shares the results of a clinical trial that tell us why EDS patients develop POTS. She explains her theory and treatment. Please see the attached article for the complete theory.
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 Driscoll shares the results of a clinical trial that tell us why EDS patients develop POTS. She explains her theory and treatment. Please see the attached article for the complete theory.
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
Dr. Diane Driscoll. I am in St. Louis…we live in FL where there is NO care for us..my child is 13 and has eds hypermobility, hyper pots and it all came on at 12 with anaphalxis during the onset of her period and with excercise. we are desperate…she has not been able to urinate and had a urodynamic study …now a headache worst in her life for 4 days…extreemely low bp…heading to er soon and so afraid it is too complex for them…st. louis children’s cardinal glennon children hospital…i may suggest they listen to your video….how do I down load… Read more »
I simply can’t thank you enough! Your research summed up symptoms that I just haven’t even bothered the Docs with as they always seem so overwhelmed just keeping me “put back together.” I have the adult onset hypermobility EDS with every single joint effected. I was fascinated by your description of the classic overachiever. That’s me. The flushing, sore throats, nausea, random rashes, fluxuating blood pressure, temerature sensativity etc never get mentioned. I live with these extreme headaches as well. I do have two questions: 1. What are the recommended dosages for Zyrtec and Zantac? 2. Is it common to… Read more »
Tears welled up as I listened to you speak, Dr. Driscoll. My 13-year-old son had advanced intellectual development as an infant, but poor motor skills, as is still the case. His height, weight, and head circumference were consistently in the 90th percentile and, I was told, within normal range as an infant and toddler. My son has never lived a day without a headache, and he wants to die. His brain MRI a couple of months ago showed several pockets of increased fluid, but a spinal tap showed normal fluid pressure. He can’t stand up for more a moment without… Read more »
This made me cry… someone cares and understands. I’m 32 years old down to 85 pounds because of this POTS mess and I have no insurance. I feel like I’m wasting away and no one cares. I’ve paid out of pocket to see doctors and they just say that I’m too sick to treat without insurance. It’s a never ending vicious circle and I’m afraid I won’t last much longer. I live in the Dallas Texas area and am desperately seeking help if anyone has any advice.
@Kelley in Dallas, DON’T GIVE UP! Here is one forum in your area where you might find help: http://www.dallas-cms.org/ss5/clinics.html It sounds like you need to go to a county or government hospital Emergency Room ASAP. There are grants and assistance for people in your situation.
Also, have you joined the Ehlers Danlos National Foundation forum on Inspire.com? There is a big community there that will respond to you.
Listen, Honey, people DO care about you. Please keep reaching out until you get the help you need! I’m praying for you.
-Kim
@Alice I’m so sorry for what you and your son are going through. My son also said he didn’t know how to get through another day. But I really think there is a great deal of hope for you and him. Remembering the overnight relief that Diamox gave us, and how quickly we started to respond to mast cell treatment (even though we’re still on OTC’s while we wait to see the mast cell specialist) was amazing. I’m working on the overlap between EDS and MS and am not only speaking at the CCSVI Conference in NY (I am an… Read more »
@Mollie McGeehon I am so sorry I didn’t see this comment sooner (new website means working out bugs. Ugh. First, you can download the theory by scrolling up on this page to the link just under “Applicable Resources” (The cause of POTS in EDS…). It will take you to instructions that say “download here”. It certainly sounds like your daughter has a fairly sever mast cell disease (mastocytosis). I can’t tell you how often I hear of EDS/POTS following anaphylaxis (and sometimes cutis laxa will follow — a “sister” of EDS). Mast cells can cause anaphylaxis (which is life threatening… Read more »
@Nicole Wow, thank you so much, and I’m so sorry that you, two are going through all of this (being a pioneer is NOT for the feint of heart!). You are the second person to tell me that their skull plates slip around. I wish I had an answer for you on that one, but I’m going to present it to my “brain trust” and see what they think. Meanwhile, no football (ha). Of course I can’t diagnose or treat you — certainly not on the internet, right? I would love to see you take a copy of the theory… Read more »
@Kelly – Hi Kelly — you and I have chatted before, but I’ wondering how you are doing… And @Alice had some WONDERFUL advice. There ARE people to help. Don’t give up. I believe we spoke since you posted this… Have you improved at all? Have you found some help? Can you pop on the forum and reach out there, too? We will all surround you and lift you up, OK?
Please let us know if you found a doctor, OK? don’t be afraid to go to the emergency room. Will you keep us posted?
Big hug,
Diana
@Kim,
Thank you for your wonderful help.
xxoo Diana
Hi, I stumbled across this website while in FB. I was in one of our EDS support sites, and there you were! Oh MY! Very insightful! My friend Gaylen has been putting her own research together, and I hope that you will be able to read what she is working on as I type this now. Anyway, I am diagnosed with classical EDS with joint hyper mobility, chiari-0, narrowed subarachnoid space, clivoaxial angle of 128 degrees causing ventral brain stem compression, POTS, thickening of the tectorial membrane, and extreme spine instability. I too find the ANS dysfunction to be the… Read more »
@ Julie Wow, you have been through it! Since you have abnormal arteries, I can’t help but wonder if you have abnormal veins, which should be draining blood from your brain. Mine are terrible (CCSVI). Fascinating diagnosis by Dr. Henderson, too. Say, you wouldn’t happen to be able to come up with your head circumferences, weights and lengths from approximately birth to approximately 15 months of age, would you? That would be a huge help for one of my studies.
Please keep us all posted!
Big hug,
Diana
I’m sorry, I don’t know the head circumferences from birth to 15 monthxs old, and my pediatrician has retired long ago. I can tell you that my niece has chiari, but her head circumference was in the normal range, but her daughter who is 5 months old is in the 95th percentile for head circumference. I know my head circumfernece now. Dr. Francomano measured it….55.4cm. I have no idea if that is normal. I will keep you posted on what I find out in the near future. I have an appt. coming up with a rheumatologist to rule out other… Read more »
Dear Diane. Over the last few months I have had a rapid decline in health and have had difficulty in finding out exactly what is causing all of my symptoms as some of them I have been told are not EDS related.. I was diagnosed with EDS about 2yrs ago at the age of 45. I was tested in a tongue in cheek fashion as my referring doctor thought it was unlikely but they could not explain my bruising and as I have always been hypomobile. I started a new job as a therapy assistant for the centre for cerebral… Read more »
Just want to say thank you. I am currently not able to get out of bed on some days. I try and push my self only to get worst. I have always been hard on myself and being sick is making it worst. To think in my teen’s I was national figure skater, but I throughout life have always struggled and been ill on and off. I had my first daughter in 2002 and after a hard pregnancy and an even harder early delivery in which we both almost died from pre exclampsia with HELLP. I was dx with IIH.… Read more »
Sorry I am sure you know this Dr. Diana, IIH is psudotumor cebrei. Dr. David Blodgette treats this and was smart enough to dx me with POTS and send me to Dr. Guabb to confirm which he did. Also my mother was dx with EDS/POTS, as well. Oh and for your study my 1st daughter has mild ASD. She is believed to have EDS. and my baby’s head has been in the 95th% since I can remember she was 25 foe ht weight. Her doc was never concerned and said she just had a big head. I really hope she… Read more »
Hi Dr. Diana, . Keep up the good research! you have noidea on how many people that theory may help. I am the one that posted headaches in the back of your head . You mentioned that maybe I have POTS and should try Diamox because maybe I have too much CSF and thats whats causing my pressure headaches. I havent went to my EDS specialist yet so he can reccomend a neurologist. I have been trying to get my hip issues fixed first ( I had hip surgery and still recovering from it) before I start a new project/… Read more »
Hi Claire, sorry so late to respond! It sure sounds like you may be in the “in between zone” where I was for a while — heading toward M.S. Of course, it is impossible to tell for sure over the internet! But I would take a good look at the Driscoll theory and talk to your doctor about getting on a mast cell treatment plan, then Diamox, if you have occipital headaches radiating down your neck. It sounds like you have intermittently high intracranial pressure actually pushing the brain down just a bit (especially at night time, when our pressure… Read more »
Hi Alaina,
With the swelling, I wonder if you have mast cell activation disorder (we battle angioedema). Please check out the info on this site. Give it a few days, but even with over-the-counter meds, if this is the issue, you’ll notice improvements in days, and significant improvements in weeks. Please keep us posted, OK?
Big hug,
Oh, Alaina, with your history of large head circumferences, please consider a trial of Diamox or Neptazane with your doctors. If this is part of the problem (please read The Theory for a complete explanation), you’ll know overnight. Really — it’s not a subtle response… Let me know? 🙂
Hi Ms. Chris, Honestly, yes, it sounds suspiciously like what we are all seeing – increased pressure on our cranial nerves. Many of us go on to develop M.S. which can present very similarly. Most doctors are not familiar with this new theory, though, so it takes a doctor with a VERY open mind, OK? Hang in…
Dr Driscoll, I just checked back and found you…actually found you again becasue I am researching munchausen syndrome. my ex is pushing this and i have to pay a specialist 12k to help us and i am a school teacher..his first child from another woman died of familia dysautonomia and he also accused her of that. saddly suzi died at 18 in 1997 whem my daughter was only an infant. i will try to track down all of the info you requested…thank you for caring about others who struggle…i thank god for the doctors like you who go the extra… Read more »
Hi Ms Chris, Yes! This still sounds like too much pressure in the subarachnoid space above the brain. If the brain is pushing down on the cranial nerves, even slightly, the damage can cause double vision (sometimes intermittently as our pressure changes). Until you can work with your docs on this, can you try something for me? Can you get a soft cervical collar from the drug store and wear it at night, and let me know how you feel the next morning? I have an idea of what is happening with you… Thanks so much, my friend. Hang in,… Read more »
HI Mollie, I had one other thought for you. If your child has mast cell disorders, interstitial cystitis (causing some of the urinary symptoms you describe) is a decent possibility. If they are open, I would say they’d have nothing to lose by treating your child with H1 and H2 antagonists and Cromolyn Sodium to see if that makes it stop. Dr. Castells and Akin are great mast cell docs (in Boston) who understand the link between EDS and mast cell disorders. Will you keep us posted? Thanks so much! 🙂 Diana
Hi Nicole,
I hope you are still watching these comments. I FINALLY learned about our skull plates shifting — can you believe it?! Do you have TMJ? You may need a mouthpiece for the evening, as these slipping plates worsen at night when we clench our jaws and it RAISES OUR INTRACRANIAL PRESSURE! It’s all pulling together! I’m sending your comment to a doctor I know working on this and we’ll see what we can do. Cool? 🙂 Diana
Hi I just thought i would update you. I started Diamox, and got off all opids. The Diamox is just what I needed. I cant say thank you enough. As for were I am at know it’s been hard I kinda shocked my body by going cold turkey my stomach was a mess for a month, but life is better without harsh pain meds. I am doing my best to not be so hard on myself. Headaches are better thanks to your suggestions. I wish many blessing and pain free days!
Hi, my name is Berlin. Im 24 and diagnosed with POTS at age 17 then EDS just last year after I delivered a Still Born in September. I have had a lumbar fusion from L3-L5 and am very hypermobile, however, I do not dislocate my joints. I am thought to have the Classic EDS because of my bruising, thin translucent pale velvety skin, and my body is like a roadmap. Every vein in my body especially my arms and legs is extremely visible, and when Im hot or have stood for too long they get even worse and it looks… Read more »
Dr. Driscoll, Thank you so much for pushing forward with your study and sharing with the rest of us. We are in Colorado and my daughter is being treated for POTS. I am having great difficulty in getting someone to look at her symptoms of EDS (I think Hypermobility Type). I also have her growth chart from the first 2 years, that shows her HC at birth in 75% to 110% around 9 months and staying there through age 2. Her pediatrician did suspect hydrocephalus, but with a cerebral ultrasound they found no evidence of hydrocephalus. They did however, notice… Read more »
Hi Dr. Diana, Thank you for posting your videos! I’m 24 and have POTS EDS III, PCOS, Fibromyalgia and CFS. I’m currently only on medication to treat fibromyalgia and CFS (10mg Flexeril po bid and 0.5mg Cesament at night). I’ve finally just got a rheumatologist to treat me after waiting 3 years and getting 3 denials from rheumatologists saying that EDS is untreatable and they have more serious cases to deal with. I’m waiting to see a cardiac electrophysiologist at the Ottawa Heart Institute. I’m having trouble trying to get my current cardiologist to take me seriously. He doesn’t believe… Read more »
PS – i also thought it was interesting about the CCSVI as I find when I look up while standing (such as when flossing teeth or putting on makeup) I tend to have more syncopal episodes.
Hi Ms. Chris,
Do you have Part 2 of The Driscoll Theory yet? I think it will answer most of your questions. You can download it directly to your computer or Kindle or “other device”. Please keep a close eye at the website and forum — you would be a perfect candidate for a registry for a blood test I’m about to set up. Hang in, Hon. As you can tell, you are NOT alone. Big hug, Diana
Hi Ms. Chris, As long as we both understand that I can’t diagnose you or treat you over the internet, I can tell you that I had all of those symptoms — and they were symptoms of hydrocephalus. They all went away with Diamox. I’ve also had patients report that their double vision (one was up to 17 prism diopters) had a resolution of double vision also on Diamox. For those patients, it looks like their brains were able to lift off of some of those cranial nerves as soon as some of the pressure above their brain was relieved.… Read more »
Hello, Everyone! Well, we have SO moved beyond Part 1 of The Driscoll Theory. We’re moving beyond Part 2 already! Please check for the paperback of The Driscoll Theory (you can find it through the Store at the home page) and it will get you up to date to a degree. Finally, we are getting some answers, thanks to you all who have shared your stories, your suffering and your medical information! Big hug, Diana
Hi Dr Diane.I saw your name mentioned on the EDNF forum site and now I am interested in the POTS/Mast cell issues. My daughter was diagnosed last year at age 17 with POTS by a Cardio and he said she had Ehlers Danlos-hypermobile type too. I just recently finally got in to see Dr Francomano(after 10 month wait!) and was diagnosed with EDS as well as put on treatment for Mast cell issues and also suspects I have had POTS or at least POI all my life. My daughter is having horrible stomach/digestive issues that no Dr has been able… Read more »
How do I send head circum values and birth details to you?My daughter has been diagnosed with POTS and EDS for a year now by a Cardio and suffering terribly low BP still, even on medication and also severe stomach and GI problems which her doctors are convinced it’s just stress because she started college a month ago. That would be valid except that this all started over 2 years ago if not before! Anyway, I just met with Dr Francomano who diagnosed me with hypermobile EDS, Mast Cell disorder and also I have imaging yet to get done for… Read more »
I had a reaction coming of Unisom I took for many many years every nite , it contains the same ingrediant as benadryal, after stopping it I ended up with burning/itching / stinging around the Vaginal area , thenwas put on a medication after stopping that medication cold turkey I ended up with severe nerve pain , but it was starting to get better , until I took a drop of childrens benadryal , now I am having even more intense severe nerve pain, I am wondering if it activated the histimine levels to be more higher levels, , I… Read more »
What is with the audio quality of this video? I can barely make out a single word!! SAD, because it will be of no use to me. I don’t get it!!
Hi Dr Diane, My name is Laura , I was hoping to see if you can give me some insight on my situation, I am in my late 40’s , ,peri meno , my story starts back in August 2009 , I was on Nytol (over the counter sleep aid ) was eaking it nightly for years 3 years ritually , and stopped taking it for a mth whike on vacation , afer 2 weeks off I started to have burning/itching / some mild stinging on my vaginal area , didnt put two and wo together , it wasnt too… Read more »
Quick update! This is no longer the latest results of my research. I will release the latest soon, but meanwhile, Ketotifen may be more effective for us than Cromolyn. For venous problems (like CCSVI), systemic treatment, NOT ANGIOPLASTY, will be needed (coming soon). Please see the videos about histamine and ‘blood thickening’ (the MTHFR video). Please keep that blood nice and thin! Working as fast as I can, I promise! Big, big hug…
My 5.5 yr old had 1.5 SD+ in head size as a baby (much higher than length and height). Today he is hypermobile, is suspicious for mild scoliosis, has a bit hyper elastic skin (not extreme in any way), easily bruises, have problem with regulating Vasopressin at night. He also has has episodes of mast cell activation, even though he has no allergies. Wait… it gets more interesting… I am diagnosed with Ehlers-Danlos syndrome. I have SEVERE dysautonomia but no doctor listens or help or even give me a diagnosis, even though it is so so obvious I have POTS.… Read more »
THANK YOU SOO MUCH. 🙂
I have 2 children with eds/pots and try to keep researching
this all makes so much sense – and ties a lot together for them!
I have EDS and POTS and noticed an ad about poor eye sight linked with these issues. I find it ironic that I have horrible eye sight.
It is wonderful that someone is trying so hard to find ways to help us. Thank you. I have had Hemipeligic Migraines since I was a very small child. I am in the process of being tested for POTS. I am interested on any input you may have in the future to do with the headaches. On may way to read your articles. 🙂 Thank you
Yvonne Spitek
Hypermobility syndrome (rheumatologist said I think you have) but just lost here in the Midwest as far as finding any doctor who has any idea of even what that is. Also leaky heart valves, lots of pain, hives, low blood pressure, jaw problems, neck and back pain, so many of the things mentioned here. Can you recommend anyone in the Midwest who understands this. I do and gave for a number of years taken Zyrtec because of allergies.
this is all new to me the search for an EDS diagnosis will soon be upon me I want all of you to know this month of June is my 25th Anniversary LOL of being sick misdiagnosed etc etc I am now on the verge of going hopefully soon to the hypermobility unit in London I plan on getting Cured from this Monster & I do not plan on waiting 25 more years to get that Cure either I am a stubborn born Irish Man & I did not waste 25 years for nothing I want answers LOL I just… Read more »
I found your info when I was doing research on dermatographia. I was diagnosed with this about 3 years ago, but have had it for around 10 years. (I am 32 years old) I have had loose hip joints since I was a young child, but never had any kind of diagnosis related to that. I have suffered from headaches with shoulder/neck pain regularly since I was about 18, and I keep those under control by seeing a chiropractor regularly. Around the same time, I started experiencing severe fatigue, but I was able to keep it under control by taking… Read more »
Does this site still operate regularly