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Surviving and Thriving with Chronic Illness

Part 1 The Driscoll Theory The Cause of POTS in the EDS Patient

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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 your study? Mollie McGeehon…thank God for you.

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 find extreme looseness in the skull plates?  Could this be caused by the mild pressure? Mine tip and slip mildly causing extreme headaches. It seems that once the ones at the base of my skull move the others follow quickly.  My jaw also slips off all the time.  It still works, but causes headaches, ear aches, etc.

I finish by thanking you a million times over for the hope you have brought to my world.  You are certainly a gift from God.

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 feeling sick, his vision goes black when he stands too quickly, he is developing high bp along with enlarged aortic root, and he has the purple veins you mentioned on his feet. He is also being treated for anxiety. His face flushes easily, and he had a 5-month-long unexplained body rash as a toddler. (He takes Zantac daily, but cannot tolerate Zyrtec.)

We have started seeing docs at Stanford recently, and it is an outstanding facility, but I still feel like Munchausen’s is always on the table—do you know what I mean? Heaven forbid that an educated mom would research her child’s condition when no one else seems willing or able to diagnose him accurately. And then when she assertively advocates for him, well, clearly she’s mentally ill. I mean, what normal mom does that?

I’m so tired of all of this, and my son has no quality of life. It’s heartbreaking. So at the risk of being accused of being a Munchausen’s mom, I’ll download your paper and discuss with the docs at Stanford. Thank you so much for sharing your theories, for caring about strangers, and for trusting non-MDs with medical info.

Thank you, thank you, thank you!

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 O.D. amongst a group of MD’s, and quite honored), I am talking to someone at Stanford. I wish I was to the point to know their EDS/connective tissue disorder folks in order to help you! (Soon, I hope…). But meanwhile, your son NEEDS you. This is not like having the flu or something well understood and ending quickly. He needs an advocate, so don’t give up. We have all been accused of being meddling Moms, I think—you just have to keep looking for a doctor who will listen.
By all means, please take a copy of the theory, and you can get on the “patient studies” portion of the website and show those to the good doctors, also. Dr. Clair Francomano (THE #1 geneticist, likely in the world, is also an investigator with me on that study. That info may help give you some clout. If there is any way you can send your son’s info on his head circumference, weight and length from approximately birth to approximately 15 months, it will help in our study AND I can graph it out for you to give to your doctor. He/she may agree that a trial with Diamox makes sense. Sound good? And depending upon his reaction to Zyrtec, your doctor may want to substitute something else.
Don’t ever give up. Oh—has your son had Marfan’s and Loeys-Dietz Syndrome ruled out? That’s important.
When our children get on top of this illness, instead of this illness on top of them, they will be the most empathetic and loving people around.
Big hug,
Diana

@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—I hope you left the hospital with at least one epi pen for her!), and hormones and exercise (and heat) can stimulate degranulation of mast cells, causing the release of histamine and other horrible things. The histamine can dilate her vessels (as can estrogen), and she can go into shock with very low BP (but the epi pen can prevent that, as can the emergency room). She may have a bit too much pressure on her brain, and this could be the cause of headaches. Would you be able to dig up her head circumferences, weights, and lengths from approximately birth to approximately 15 months? I can help you, and this information would be very valuable to her doctors and justify to them the trial with Diamox.
This is a difficult syndrome for any medical facility to figure out, frankly, but the theory may help, and they can pull up a book about mastocytosis! They will certainly understand anaphylaxis, and will be able to get her BP up, taking care of the immediate problems.
There are so few “experts” out there, that I had to become my own, and then find doctors who were willing to learn and be open to new ideas. Once or twice a year, we head to the mecca of connective tissue disorders—Baltimore! I see Dr. Clair Francomano and she is great. She could likely help with your daughters urination issues, too (she may suspect tethered cord).

You two hang in, OK?
Gentle hugs to you both,
Diana

@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 (just scroll up—it’s the first listing under “Applicable Resources”) to your doctors. You may find great relief with Diamox and a mast cell treatment regimene. Mast cell disease is SO tricky to diagnose, it’s almost easier to treat it, and see if you respond! My kids and I take a double dose of Zantac and Zyrtec (double what is recommended on the box). I also take a PPI (proton pump inhibitor) - Zegerid, and my kids are about to start on Gastrocrom (Rx by their doc) for mast cell stabilization.
I’ve gotten some great education and advise on some mast cell forums, and there is a stairstep up treatments—all of the way up to treating it like cancer (which it can be. ugh).
I hope this helps, and please keep in touch—oh, and check out the forum here—there are some great people getting on!
smile Diana

@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 worst part of any of this!  I “crashed” on Dec. 5th 2000 after a tooth extraction, but I noticed milder symptoms as far back as the 80s…probably younger then that if you count the digestive issues.  BUT, one always remembers the heart symptoms, as they can be the most disturbing.  Lately, I have been having these “spells”......I’m not sure what they are, but it feel as if my heart is going to stop, then I feel hard beats, irregular beats, sometimes a surge of adrenaline, then usually tachycardia for a while after that.

I’ve been on beta blockers for tachycardia since 1990.  Even though I had the milder symptoms, I have always been pretty active until 2000.  I worked in a uniform…shop towel…industrial uniform company from 1990 to 2001 as a commercial collection specialist, and office mgr.  We had fumes that were very strong that filtered into the front office; often it would leave any food left in our desks….crackers, ect. tasting like lighter fluid.  The EPA busted them in 1990, and this was not a problem for many years.  But in mid 2000 we noticed the fumes return, if not before that.  Anyway, I thought the chemical exposure may play a roll in the initial “crash”.  Actually I had a milder crash in 1990.

Right now I’m very bad off, and I’m currently seeing Dr. Fraser Henderson, and have been to NY Chiari Institute, Dr. Durrani, and had surgery on cervical spine in June 2002 by Dr. Dan Heffez.  My POTS doc is Dr. Grubb, and fortunately he’s local, as I’m only about 1/2 mile from his office in Toledo.  I’ve hosted many people who have come to see him through the years. I was diagnosed with POTS in June 2001.  I did not get diagnosed with EDS until Oct. 2006.  I was diagnosed by Dr. Wenstrup at Cincinnati Children’s, then by Dr. Tinkle who took over for him, Dr. McDonnell at the NIH Study, and again confirmed by Dr. Francomano.

After being on a heart monitor over and over, we cannot catch the heart arrhythmias, as they only happen every so often.  Sometimes 3 years will pass.  They are so disturbing, and this years I had about 4-5 of them in a 3 month time span.  I know you might thing this is odd, but I had been using ear buds for my phone, and there was a stereo sound to it, and it seemed the arrhythmias followed.  I’m very noise sensitive.

Also my left vertebral artery is missing, or very hypo plastic.  NIH discovered this, and it also appears there’s fetal origin of the left PICA.  MY right vertebral artery is enlarged, and I have edema in the lower neck near my clavicle on the right as well.  This has been there for five years!  Dr. Henderson said I have cervicomedullary syndrome, and damage to the dorsal motor nucleus of the vagus and nucleus solitaris!  He felt this might have something to do with the arrhythmias.  I think the irritation from the sounds waves from the base sound may have had something to do with this, along with the mess in the cervical cranial junction.

I was diagnosed with ADHD when I was 6 years old, and didn’t talk until I was 3.  In the 70s though the high school years I was thought of by the teaching faculty as “not very smart”.  I didn’t believe that, but it shook my confidence.  I dropped out of high school, but later received my GED.  After working about 7 years with the uniform company I went back to school, and learned how intelligent I was.  After my 3rd. class, I started getting sick, but I finished it.  GPA was 3.8, and when I went back for a year to another community college for a year to take medical coding/billing my GPA was 4.0 when I finished the program.  This was after my surgery in 2002.  I still struggle with comprehension, and have to go over things again and again, but my apptitude in medical literature is good.  My common sense is GREAT…..lol.  I don’t see the latter in the medical profession.  I find that many people who deal with all of this know more than their physicians.  A major disappointment was the Cleveland Clinic!!

I look forward to further valuable research from you, and hope that your theory will be employed by the medical profession.
Thanks so much for reading!
Sincerely,
Julie Tremp

@ 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 thing like CFS & other autoimmune diseases.  I bet a dove chocolate bar he doesn’t even think I have EDS…..lol!  This will be an interesting, if not entertaining visit.  Hopefully I be pleasantly surprised!

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 palsy (physio, occupational, speech) and started to experience more dislocations and more bleeding and bruising while helping clients.Things came to a head when I went to get in my car to go to work on 17th February and could not see to put the key in the ignition. My eyes crossed over and I was seeing double,I have tried several eye specialists and have had two diagnosis’s. The first diagnosis was accommodated squint, I had patches, pyramid glasses, atropine twice daily in both eyes, and lets wait and see, I then had a new diagnosis of accommodated spasm and told to wear 1.5% lenses for every day wear and 3.5% for close work. I was then given bifocals with the above lenses and told to wait till they returned to normal. I have had to have tints put into the glasses as the atropine aggravated my eyes and made them extremely light sensitive. Thus far I have had six eye specialists and no prognosis or long term solution. I am told they will go back to normal when they feel like it and it is not EDS related. I also loose blocks of vision in my right eye and sometimes complete loss for brief periods (grey kind of curtain block).
At the same time as this my left shoulder kept dislocating and then refused to be relocated. It has now been out since February and I have some muscle wasting in that shoulder and top of the arm. It took quite a while to get anyone to realize it had been dislocated for this amount of time as we had been concentrating on trying to right the eyes. Once the orthopedic surgeons realized how bad the arm was they are stumbling for solutions. I have had approx 5 MRI’s in the last 6mths. One of the MRI’s on my shoulder picked up a small syrinx from C-2 to C-7. They scanned again to take a look at the syrinx as my symptoms have now gone to my right arm and my legs, they all show increasing weakness and the muscle tone on my right arm has began to resemble the left. My right shoulder is now beginning to dislocate at an alarming rate and seems to be following the path of the left shoulder. The orthopedic surgeon is worried that if the syrinx is responsible for the muscle weakness that operating on my limbs to relocate them may be difficult as the muscle tone will not be there to help keep them in place. The first neurologist I saw was unsure and has referred me to his senior who I have been waiting for three weeks to see.
Lately my symptoms have been quite depressing as I cannot rely on my legs by the end of the day and I quite often fall over. My head knows exactly where I want to go but my legs will fold and down I go. I have always had the ability to faint due to low blood pressure and standing up to quick, I also faint when to hot and seem to have no temperature control. I was used to that but this is new as I don’t feel it coming and don’t expect it, as a result I think I have had a black eye in one form or another for six months, one heals and I do another.. I get dreadful neck ache and find I have to sleep facing one direction and with a pillow rolled under the nape of my neck. Over the last three weeks I have found I am breathless at funny times. I do not get breathless if I am walking (I use a tread mill to try and keep muscles going) but I will become breathless when sitting, especially if sitting angled to the left. I am not sure if this is related to EDS, syrinx or new medicine Lyrica, although I have been on that for several months now.
I have classical , hypo mobile, and possibly vascular EDS (am prone to large amounts of bleeding)
I think I have un diagnosed POTS
mild scoliosis
pituitary gland condition for which I take thyroxine
I have always been overly flexible and bruised way to easy but it did not cause me any problems. I have gone from being reasonably paid hard working and healthy to loosing my job becoming very fatigued and immobile with multiple problems and having to try and resister myself as disabled. I touch type so I apologies if I have spelling mistakes as obviously I am cross eyed and find it hard to proof read.
I wondered if you had a video (full version ) of your findings as I wondered if any of them would explain my quirky symptoms. I am unable to read type for any length of time as even when I cover one eye (which I do to uncross from time to time) my vision goes and comes, much the same as a camera lens and my eyes become very sore so I can only manage short bursts. If not do you plan to have one in the future as I will look out for it
Thanks
Claire

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. I also had 0 iron in my blood and gain alot of weight even though I had no appetite and was always having stomach problems either diarrhea or vomiting. It took what seemed like forever and an LP shunt to make me return to some what normal again. The headaches where much better and the weight just melted off. Then I became pregnant agin with my 2nd daughter. I terrified after what had happened to my body 6yrs before. But I dont believe God makes mistakes and I had an even harder pregnancy with baby number 2. This was 09 and I have yet to get my life back. I had around 15 nero surgeries in 2010. They tried to fix the shunt and they kept breaking and the head pain worsen with each surgery plus I am a very slow healer. Then after 2 ICP picks in my skull they found extremely low pressure, my nero surgeon then found Chari 1. I had the nerve decompression 2 days before Christmas. I woke up 10x worst. Swollen blood pressure problems and pain all over my very swollen body. I came home on pain med and was told I would feel better, but again they were very wrong. My body kept swelling, and ballooning my ring size went from a 5 to an 8/9 in 2 wks. After many dr. visits I was dx by Dr. Grabb with EDS with POTS. I just saw Dr.Grabb this month. He was and is an amazing man and doctor. I have what has plagued me for so many years, now I just wants to be able to feel better. Please help me I know there is little to be done. But I have faith that I will get better. I just want to be the active mom I once was. I have a BS in child dev. and I have helped so many others with there children. I want to raise mine. If you have anything in which might help I will do it. Thank you, and blessing as you yourself battle this horrible disease.

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 doesn’t have EDS as well. Sorry to add more I am an over-thinker.

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/ health issue With in the last month I have developed ringing of the ears off and on, both of my hands are shakey , I definatly have brain fog( takes me awhile just to think of the right words t say or write) , I get dizzy ( a swirling effect)  when I turn my head left or right, I see flashing lights in the evening/night and have developed more double vision. My optometrist checked me for retina detachement and that was fine and he also checked the pressure for glaucoma which was fine.  He raised my prisms up 2 1/2 to fix the double vision. I am now up to 71/2 if that makes sense.. I still feel pressure in my back of my head and the sides even though my headache isnt as bad as its been.  I just wanted your opinion. Does this still sound like POTS/ toomuch CSF now that I have the other symptoms too?  I know you cant diagnosed me over the internet but your opinion would be great. smile Do you think I should I see My EDS specialist sooner than waiting for another month or so? The symptoms are driving me crazy but I hoped to wait a bit longer before I take on another issue..  Thank you for listening!

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 is at its highest). The fluid can also collect in our easily distensible cerebromedulary cisterns causing pressure on the brain stem. You may have CCSVI, making drainage of your venous blood in your head more difficult, too, exacerbating your problems, but I wouldn’t recommend treating that until you had a good handle on any potential mast cell disease, as this may increase our chances of restenosis. This page has all of the resources and the Driscoll Theory Part 1 ready to print out. No charge.
http://prettyill.com/videos/watch/why_eds_pots_patients_are_so_ill_relief_the_driscoll_theory
Hang in, Sweetie.

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? smile

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 mile..and then some.

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, OK? smile Diana

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! smile 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? smile 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 pretty scary. I wish I knew why this is getting worse and worse. As of recently I’ve had so many “episodes” Im starting to feel like Im dying. Most episodes happen when Im sitting or laying down doing nothing. I’ll have a surge all over, my heart starts going really hard and fast, and I’ll tingle all over… then sometimes my heart feels like its stopping and Im “bottoming out” so I start to move around and my fingers and feet and face and everything feels kinda tingley/numb? Its VERY scary. I suffer from ALOT of anxiety and its hard to decide if Im having a anxiety attack of a POTS attack. I’ve also had a lot of palpitations lately and an “achey” feeling behind my neck. I just recently had some blood work done and it showed my thyroid was low and a few other things were off. I was premature by 2 months and was a delayed walker. My husband always tells me I have a small head/face and my chin is quite little too… does this mean anything? I’ve also had a lot of times lately that my skin looks very mottled and my fingers turn grayish. And my feet are COVERED in spider web like veins? I just found out Im pregnant and Im just completely confused on what to do to help myself. I’ve been around the ringer and I feel like Im too tired to research anymore or to make another decision about anything, but Im getting VERY disabled and can’t get through the grocery store because I get horrible pain in the back of my legs after standing and start to get really messed up autonomically (sweat, increase hr, faint, etc) <—- just going through the grocery store :( Please help. Any info will help. God Bless

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 a mild expansion of the subarachnoid space which they attributed to benign cystic hygroma.  We were told that her tests were normal, but nothing about the hygroma.  We moved from Ohio to Colorado when my daughter was 4 years old, and never thought about her large head again.  We are desperately trying to find the right doctor(s) that could put all this together and help in her treatment.  So far she has not responded well with the traditional POTS treatment and took a major turn for the worse upon returning from a trip back to Ohio.  The adjustment back to the altitude here in Denver seemed to contribute to her worsening symptoms.  Could you advise me as to what I should do or where I should turn to get my daughter some help?  Thank you so much for your help! - Kathleen

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 that POTS can be secondary to EDS. He doesn’t even believe I have POTS despite having been diagnosed by a cardiologist in the hospital. He says I have vasodepressor syncope, which i don’t because my blood pressure and heart rate do not drop when I stand, but rather they jump dramatically within a few seconds of standing (from 80 bpm in a supine position to 170bpm in a standing position within just a few seconds). I’m in university and working and am just finding it hard to function as my symptoms are getting progressively worse. Is there some sort of study I could refer my specialist to in order to get him to take my concerns seriously? Thanks

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.