Dr. Diana Driscoll Speaks at the Ehlers-Danlos National Foundation Meeting

Dr. Diana Driscoll spoke to doctors and patients at the Ehlers-Danlos National Foundation Meeting (EDNF) in Houston, Texas August 1st and 2nd.  Her topic was Your Eyes and Ehlers-Danlos Syndrome.  Dr. Driscoll, herself is an Ehlers-Danlos Patient, therefore her lecture extended beyond the ocular effects of Ehlers-Danlos Syndrome (EDS) and included some of the treatments and techniques that she has found to have increased her functionality.

The National EDNF Meeting is held every other year and is presented as an opportunity for patients with EDS, doctors and researchers to unite in their quest for answers to this debilitating condition.

Ehlers-Danlos affects multiple body systems requiring a multidisciplinary team of doctors to assist patients.  Physicians of many specialties were present as speakers, patients and attendees.

About Ehlers-Danlos Syndrome

Ehlers-Danlos Syndrome is an inherited connective tissue disorder affecting our body’s production of collagen used to make connective tissue.   Connective tissue is the glue that holds our body together making up approximately 80% of our body weight.  The most common symptoms of EDS affect the joints and skin.

Skin symptoms are characterized by thin, soft, velvety skin that bruises easily and stretches.  Tearing of the skin is common along with slow wound healing.  Scars are often look like “cigarette paper”.

Joint symptoms include hyperextensible joints (joints that extend beyond their normal range of motion). People with hyperextensible joints have often been called “double jointed”.  Because the ligaments and tendons are “stretchy” the joints dislocate or become subluxated easily.  The premature onset of osteoarthritis is common and is often difficult to identify in an X-ray.

Some of the more common ocular symptoms of EDS are keratoconus, angioid streaks, and myopia.  EDS patients are not candidates for LASIK.  At Total Eye Care we are keenly aware of the potential complication that can result from any corneal surgeries performed on Ehlers-Danlos patients.

One of the most debilitating complications of EDS is a type of dysautonomia called Postural Orthostatic Tachycardia Syndrome or POTS.  Dysautonomia is the result of our autonomic nervous system ceasing to function properly.  Our autonomic nervous system regulates functions that our body does automatically such as digestion, breathing, heart rate, blood pressure, body temperature, blood sugar regulation, hormonal/endocrine imbalances and our  sleep cycle.

Postural Orthostatic Tachycardia causes a person’s heart to race when they stand still.  When a normal person stands, their heart rate may go up a few beats per minute and stabilize. A POTS patient’s heart rate will go up over 30 beats per minute.  If their body can not compensate, a POTS patient will often faint or shake uncontrollably.  A tilt table is used to test for POTS.

It is estimated that 40% to 70% of EDS patients suffer from POTS.  Many patients with POTS don’t know that they have EDS and are often mis-diagnosed with fibromyalgia or chronic fatigue syndrome.  It is thought that autonomic dysfunction is caused by instability of the cervical spine thus interfering with the brain stem’s ability to regulate our bodies.

The classification system for Ehlers-Danlos Syndrome consists of 6 types; Classical, Hypermobile, Vascular, Kyphoscoliosis, Arthrochalasia, Dermatosparaxis.  The prevalence of EDS is approximately 1 in 3000.  EDS affects both males and females and is not specific regarding race or ethnicity.

Ehlers-Danlos Syndrome is a genetic disorder, however many patients, such as Dr. Driscoll, are unaffected until the symptoms are triggered by a virus.

An updated version of Your Eyes and Ehlers-Danlos Syndrome is now available, with color photos, on Amazon.com as a downloadable eBook.

This entry has been cross posted on The Total Eye Care Website.

48 responses to “Dr. Diana Driscoll Speaks at the Ehlers-Danlos National Foundation Meeting

  1. Thank you so much for posting the lecture slides of your talk. I had no idea that so many of my eye problems were EDS-related! My eye doctor had never heard of EDS but was willing to Google it and make an educated guess that he should be looking for lens issues. I will certainly bring the handout to him next time.

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  3. Effie Goodall

    Dr. Driscoll. I am so glad that you posted your lecture slides and your personal information. I think that I have the kind of POTs that you do. I get lots of faint spells and fatigue is hard to endure. I have seen a sleep doc and I ask him if I could try my own little test on used his oximeter going from sitting to standing my heart rate increased by over 30 beats.
    Most recently my GP sent me to a neurologist because I have abnormal tracking and saccades in my eyes. The neurologist is sending me to a neuralopthamologist to evaluate further. I had a horizontal MRI that came out normal. The NP at the neurologist’s office said that a vertical MRI would not have changed my MRI results. What are your thoughts? What could abnormal saccades and tracking mean? I have Classic EDS. Thank you again for being so helpful and transparent regarding your illness. I sincerely wish you the best and have the most appreciation for you.

    Warmly,
    Effie Goodall

  4. Hi Effie,
    It is so difficult to give you an answer on your tracking and saccades without getting a chance to check your records. What is the neurologist’s reasons for it, if he can’t see anything on the MRI? I’m assuming this is a new symptom/sign for you? I wouldn’t let this just drop. Ask until you get an answer. If you can email me, I’ll send you a link to the latest article on vertical MRI’s with cranio-cervical instability. Are you having any Chiari symptoms? Any anterior brainstem symptoms? Any blepharoclonus? (If you don’t know, that’s OK. Just ask the neurologist. It may send him running to his books, though!). It’s important to keep seeking answers for abnormal results like that.
    Fondly,
    Diana

  5. I have EDS III and POTS and now have developed monocular diplopia. My eye Dr. worked for 2 hours today w. various tests and she has referred me to a specialist. I will give him your handout.

    Thank you.

  6. ^^^
    Macular pucker. (I’m 41.)

  7. Hi Dr. Driscoll,
    I just wanted to write you a quick thank you on posting this info. for patients with ehlers danlos. However my nephew (son) has not been officially diagnosed yet (already know for sure in my heart) this info. was very helpful for the optometrist. He had never seen a patient to date with it so this was/will be his first. He was very receptive to your information. I have posted a link to your info. on my son’s website. If you get a chance, i would like you to visit it. We have a lot of info. on there and if you would like further info. on medical/family photos just email me and i will send you a link to that as well. I am pushing that info. on any doctor who will have it to better understand the disease.
    Wendy K.

  8. firstly thank you for this v informative blog!!!

    keratoconus- does/can the corneal cone shapedness come and go? vary from day to day?

    bf (who to me shows signs of ‘several’ connective tissue disorders) the other day had the cone shapedness as pronounced as in the pictures in your slideshow- next day it was back to normal…????

    with thanks
    serena (EDShypermobility/autonomic dysfunction)

    • Thanks for the nice comments. Regarding your keratoconus question. I would not expect a keratoconic cornea to change so rapidly that it goes from normal to showing the pronounced protusion, called Munson’s sign, that rapidly. I would recommend that you have your boyfriend see an eye doctor and he or she could take topographical corneal photos and corneal thickness measurements (pachymetry). These measurements would be the way to monitor that type of change. Follow this link for a more comprehensive review of keratoconus. Please feel free to write back if you have more questions.

  9. I was just diagnosed with Ehlers-Danlos today and have a question. My eyes used to be very blue, but have changed color over the past two years. My husband has noticed it, too. They now look almost green, or like there is more yellow/brown that with the blue looks green. Is this possibly related to the EDS? Is this even possible at all? My primary care doctor looked at me like I was crazy for even thinking they have changed, but they have.

    • Congratulations on getting a diagnosis, many people struggle for years trying to find out what is wrong. Regarding the change in the color of your eyes. I am not aware of any reports that EDS has changed the iris color. I would recommend you take close up photos of both eyes and repeat this periodically, possibly every 3 months. Your eye doctor could also help you with this. I can not think of any reason why EDS would cause a change in eye color. However, so many things about EDS are unknown it merits further study and follow up.

  10. I have just been diagnosed with EDS III and have recently been looking into LASIK surgery. I’ve never had an issues with other types of surgeries/healing in the past. How real is the risk here?

  11. I forgot to mention above that I have seen two clinics prior to the EDS diagnosis. One cleared me without question. The other mentioned I have thinner corneas and I had to get some yellow deposits checked out. A consultation/check with an independent ophthalmic surgeon said they were insignificant.

    I really would like to get LASIK done as I couldn’t ever get on with contacts and I find glasses very uncomfortable above the ears and across the bridge of the nose.

  12. Further to above, both clinics use Wavefront technology.

  13. David, a number of things concern me here, not the least of which are thin corneas. I would encourage you to see a doctor that is familiar with all of the the refractive options, including laser refractive surgeries, lens replacement surgeries, contact lenses, glasses etc. You only have two eyes and if you should have to fix a bad LASIK/PRK outcome you will wish you had exhausted all options.

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  15. I was just diagnosed with EDS-hypermobility . Took a year from when my Rheum. suspected it. Tmjd diagnosis at 20 but not too many problems except Proprioception srewed up my short game in golf. The problems with EDS accelerated after pregnancy. Had C-def for 28 days early in pregnancy followed by 1st hiatal hernia. Could this virus have triggered the EDS?

    • Congrats on finally finding an answer. As far as can a virus cause EDS, not that I’m aware of, however the research into EDS is relatively thin at this point. A virus has been known to trigger autonomic nervous system dysfunction in EDS patients. Many patients with EDS get POTS (postural orthostatic tachycardia syndrome) which is a type of autonomic dysfunction.

      • I must have written question before my C-def is bacterial not viral. Could that have triggered the c-def.?
        http://en.wikipedia.org/wiki/Clostridium_difficile
        Also, I have noticed that all fluids “go right through me” additionally, not just local anesthesia but most medications seem to have a stunted effect. Could the thin tissue walls expedite the meds out of my body before they can take affect?

    • My prior answer was before morning coffee. Many women notice that EDS gets worse during pregnancy, this is because their bodies increase the amount of relaxin released, a hormone that loosens the joints, making delivery of the baby easier. Unfortunately, it will make all of their joints more flexible. After pregnancy the relaxin levels go down.

  16. jennifer smith

    My doctor suspects i have EDS, my joints are very loose. My question i have pain in my abdonial right side along with chronic diaherra for yrs. my dr. has no explanation could this be related to EDS?

  17. Hi Jennifer,
    Yes, your symptoms could be related to EDS. It would be a good idea to see a geneticist to get a firm diagnosis and to learn what type you have, if any. What we often see are IBS symptoms, and it is fairly common to see patients alternate between the big “D” and the big “C”! One concern is a possible weakened area of your intestines that if it continues to stretch out, it can cause infection and can even rupture. I would definitely pass this info to your doctor and have it checked out. Don’t hesitate to holler if you need any further help, Jennifer!

    Dr. Diana

  18. I have EDS and have been having MS like symptoms for years. I never saw anyone for them until recently. I’ve since been diagnosed recently with peripheral neuropathy, raynaud’s phenomenon, memory/cognitive issues, and have had headaches almost daily for a very long time. I always thought they were tension headaches because they always stem from the same place-cerebellem. My EEG showed some cardiac palpitations and what they questioned to be evidence of drowsiness or some kind of barbituate (which I had not taken). I had to see a neurologist finally because I have had 2 simple partial seizures and severe fatigue. I have my MRI films and they show what I suspect is at a minimum borderline Chiari Mal. 1, but I’m not sure. I also can see some flow issues around the cerebellum since they did it with and without contrast. I hate to look like a hyperchondriac or dispute a “normal” MRI because I don’t want to upset any of my physicians, I need their help. I’d love to have someone else look at the film and tell me their opinion, i.e., should I seek a second opinion. Since reading some recent articles, I am wondering if maybe it is Cranio Cervical Instability. It would make sense considering my headaches are the worst sitting up. I literally feel it pulsing back there sometimes. Any advice would be appreciated. Thanks!

  19. Hi Jennifer,

    We are making some great strides with this apparent link between EDS and MS. We need to get the pressure off of your brain (it’s likely causing the headaches, but much more than that, too!). How would you feel about a pill instead of surgery, if it works? Here is my email. Can you contact me directly and we’ll “chat”? Thanks, Jennifer. Hang in!

    Dr. Diana

    • Hi Dr. Diana, can you ellaborate on your response to Jennifer on 3/16/10? I have many of the same issues and would like to hear what you are referring to as the pill versus surgery.
      Thanks!
      Heather

      • Hi Heather,
        Take this with a grain of salt, since I don’t know about your situation or condition, OK? Some of us are getting relief from Diamox (it reduces the fluid pressure in our heads). My son and I originally went on it when I was convinced I had high intra-cranial pressure (headaches at the base of the neck in back, radiating out in an “angel wing” pattern, and even dull ear aches). The Diamox stopped the headaches within 12 hours, and now (months later) some of our symptoms are abating (hormones are returning, tremors are lessening, fatigue is more manageable, etc). What befuddles the docs is that our lumbar punctures show low or normal pressure readings. I believe that our CSF is not draining well through the lousy veins in our neck, and our dura is stretchy, which makes the readings even less reliable.
        There is a school of thought that poor CSF flow may lead to M.S., which is fascinating. The old CSF contains “waste products” and iron, likely. When we went on Diamox, our urine was the strangest color! Had I known that was going to happen, I would have collected it to see if it contained any iron… I also wonder how many M.S. patients have undiagnosed EDS (I know 2 personally).
        Thanks, Heather,
        🙂 Dr. Diana

  20. Is there a Dr. in the Houston area that specializes in EDS? If not, would it be worth traveling to the DFW area to learn more about it? My rheumatologist is thinking about sending me a to a general geneticist, because of what he is calling “hypermobility” syndrome at this point. But, I also do have kerataconus.

    • Tamara,

      I am not aware of a geneticist in the DFW or Houston area that specialize in EDS. However there are some in the Baltimore area.

  21. I have just been diagnosed with EDS after over 20 years of misdiagnosises. I also have Chiari 1. My opthomologist noticed pigmentary changes in the macular of my right eye, but I am only 42. Do you know if these changes could have anything to do with EDS?

    • Hi Sue,
      I’m so sorry that it has taken 20 years to get a diagnosis (although not terribly unusual). Did your eye doctor tell you what kind of pigmentary changes were seen? Are you very near-sighted? Do you know what type of EDS you have? Is the BEST corrected vision in the right eye as good as the left?
      We are more prone to macular degeneration, but the answers to these questions could help us figure out what your doctor saw. Also, I would call your doctor’s office and ask for a clarification of what they saw (was it dark pigmentation, drusen, or what?). Did they take a photo and can you have a copy? When would they like to see you back sooner than a year?
      Is there any macular degeneration in your family?
      So many questions, I know! But you want to make sure that you have a clear idea of what they saw (and they really should take a picture if they see this at your age). I’d be happy to take a look at the picture if you can get one. Just let me know!
      Thanks, Sue, and please let us/me know how the rest of you is holding together!
      🙂 Dr. Diana

  22. Thanks so much for your reply Dr Diana! I am not sure yet which type of EDS I have. The geneticist believes it is either hypermobility type or classic type and she is trying to find a place in the USA who will do a dna test at a reasonable cost to try and narrow it down. (We are in Australia).

    My sister who is 38 and I both appear to have this – we are both highly myopic. She has a mild mitral valve prolapse, mild tricuspid regurgitation and mild/moderate pulmonary hypertension, but she is actually
    quite fit and feels well at this stage. I, on the other hand, suffer from chronic headaches and other symptoms associated with blood and csf flow problems associated with Chiari Type 1 (we both have Chiari 1 but she is asymptomatic). We both have hypermobile joints and I have a pronounced pectus excavatum.

    Back to the eye problems, my grandmother had macular degeneration which was diagnosed when she was about 80 – she lived to be 88. I do not know what type of pigmentation I have other than “pigmentary changes” I have seen an optometrist who referred me to an opthamologist. He wants to see me on a yearly basis to keep track of it, but felt there was no need for
    concern yet.

    I do have a picture of each eye and if you would like me to email it to you. I can be contacted at the email address I entered into the comment box. My right eye which is the one with the pigmentary changes is -6.5 and my left eye is -6.0. I think that just about covers the questions! 🙂 As I said, I would be happy to email you a copy of my eye pictures if you are able to email me your email address. Thanks again!

  23. Just one more thing I forgot to add to my post above, the pigmentary changes appear to be “dry macular”. I am sure you would understand this far better than me, although I have done a little online research, and I seem very young for these changes to occur don’t I?

  24. Hi Sue,
    I will send you an email, but meanwhile, have you had your cholesterol levels checked? Some of us EDSers have abnormally high cholesterol and there is some school of thought that this may lead to macular degeneration.
    Please take LOTS of fish oil tablets (and eat salmon, etc), and a lot of green, leafy vegetables. There are also “eye vitamins” you can get over the counter that have been proven to help. I would look for a “name brand” with lutein.
    Sue, is there any chance that you have Marfanism?
    Also, I was wondering if you have headaches in the back of your head, perhaps radiating outward on your upper back like “angel wings”. If so, would you try something for me? You can buy a soft cervical collar at the drug store. Go ahead and wear it when you sleep. If it helps (with CSF flow — you’ll know — trust me), I may recommend that you ask your doctor for some Diamox to relieve the CSF pressure on your brain and brain stem. It’s been a life saver for quite a few of us.
    See you on email soon!
    Hang in,
    🙂 Diana

  25. Hi Diana!

    Thank you for your response. Marfanism has been ruled out completely and my cholesterol has always been very good. I take diamox when the pressure is very bad, but I get a strange side effect when I take it – a severe pulsating pain in the left side of my neck.

    I’ve taken fish oils since my 20s and I love salmon and eat it whenever I can. I have tried the cervical collar, but I may have to sculpt it a bit because it is quite uncomfortable.

    I didn’t receive your email, but when I do, I can send you photos of my macular.
    Thanks again Diana,

    Sue

  26. Brianne Steele

    Hello Dr. Driscoll,

    I’m so excited to find this thread and am wondering if you’re aware of any published literature regarding outcomes of Diomax usage in EDS patients. I’m pending testing to rule out or confirm VEDS, but recently my cervical symptoms have increased and I’m really searching for relief, but want to avoid surgery unless absolutely indicated, but after symptoms of atlantoaxial instability with cord compression a concern, I might not have a choice 🙁 Nonetheless, I’d love any articles, etc. on diomax if you’re aware of any!

    Best wishes,
    Brianne Steele

  27. Hi Brianne,
    Great question. That’s kind of what we are trying to figure out here — can Diamox be used to help with both the cervical pain and the symptoms of the crowded brain stem area (from overly full cisterns surrounding the brain stem).
    I WISH there were already studies out there for this, but it looks like we may be on the cusp of science here…
    This may help some: http://j.mp/eT5rAx It’s a great primer, but also explains how Diamox is being used for dural ectasia in Marfan’s (a connective tissue disorder), and how little research there is on this drug for chronic intracranial pressure. I hope it helps!
    Thank you for your question,
    Dr. Diana

  28. I am 41 and have classical EDS (we have 3 generations in my family). I am also diabetic. I wear contacts (-10) for my vision. I have really bad peripheral vision with glasses so contacts are much safer for me. In the last 6 months, I have noticed that my vision is blurry and that my contacts are getting a film on them that my eyes are secreting. The only way to remove the film and clear up my contacts so that I can see is to rinse them. What could be causing this? Any information is greatly appreciated.

    • Hi Tiffany,
      Welcome to the Classic EDS Club (we need to wear pins or something). 🙂
      There are a number of things that may be causing this, and all have treatments. Yea! I have more questions than answers at this point, though. What type of contact lenses do you wear? How often do the lenses get coated? Are you experiencing any dryness, redness (even just on the lid margins), itching, discharge (sticky or watery)? If you can guide me a bit, I think I can help you with some potential answers (although in person is always best!).

      🙂 Dr. Diana

  29. This forum has made me feel truly sane and given me more hope than I have felt in a long time. I keep cycling back through denial, really stuck in that phase – after all, my whole life I dealt with my falling-apart joints and pain by punishing my body and becoming super-strong, a track and cross-country champion, equestrian, 1-person demo team, landscaper, etc. and forced my muscles to do all the work my tendons and ligaments were supposed to do. My pediatrician early on told me my joints were abnormal and recommended against many activities: all of which I proceeded to do with great gusto and success. In short, my orneriness served me quite well for many years. My pain threshold (except for my eyes) is off the charts: kidney stones, natural childbirth tiny me 114 pounds day before, IBS/Crones, what of it? Walk in the park. Every single training run and race were excruciating – I actually thought everyone hurt like that when they ran. Thank goodness for endorphins is all I can say.

    My severe keratoconus finally diagnosed age 33? Well, after being told by our family ophthalmologist there was noting wrong with my eyes – go to a psychiatrist… it took me years to work up the nerve to see a decent optometrist and many, many years of low vision, mistakes and suffering to find real help (Beverly Hills and Wilmer/Johns Hopkins mostly). Biggest mistake was a cornea transplant in DC in 2007. Pain pain pain and worse vision. Thank goodness for the gifted surgeon in Beverly Hills! Eye would still be useless and the pain would have driven me insane for sure by now (I guess that first MD was right in a way…?) He also saved the other eye with crosslinking, 1 Intac segment removal and CK. The doc at Hopkins helped me with dry eye and subtle but painful blepharitis and helped monitor my follow ups of the surgeries in Beverly Hills.

    My life is so different now. I am paying the price for all those years of ignoring my pain and punishing my body. At 51, I feel most days like 81. I use a four-wheeled walker, have a hangtag for my car (hey, at least I can see well enough to drive again) and have seen the wonderful EDS specialist in Baltimore. She is amazing and fascinated with my somewhat radical therapy that helps most days: magnesium sulphate IVs every 4 weeks or so, up to 120 meq Klor-Con, 1200 mg flax seed oil, lots of time-release Vit. C, liquid oral magnesium, dessicated adrenal cortex, natural thyroid, probiotics, L-Theanine daily, and sometimes Kava-kava, Valium and rarely allow myself a Demerol when I stick a 10 for way too long and need to interrupt the pain cycle so I can keep working as long as possible.

    I found pool therapy and expert deep tissue work to be extremely beneficial, but can no longer afford it. I am going to start back on the NordicTrak and try the balls, braces, etc. you recommend. How does Valium compare with Xanax? The doc in Baltimore says I am using it responsibly and it is a good muscle relaxant, which is great as my muscles clench and spasm a lot (right calf, intercostals, shoulders worst). I guess I trust the “old school” stuff the most. As I have been suicidal in the past, Cymbalta terrifies me. I’m thinking I need something more though, even my 30-hour work week is killing me. Have you heard of SAMe? There is a recent Harvard Medical School and Massachusetts General Hospital in Boston study. Quoting from the NYT: “SAMe stands for S-adenosyl methionine, a naturally occurring molecule that is widely used in Europe for depression, arthritis and other ailments. It is found throughout the human body, with high concentrations in the liver, adrenal glands and brain.” Sounds promising to me. What do you think?

    Oh, don’t you love the good days? I live for those. Thanks so much for your hard work, encouragement and insight.

    Deborah

  30. Diana Driscoll

    Hi Debbie,
    Yes, you are in familiar territory here! So many of us pushed ourselves when we were younger (did you know that EDS folks tend to have a low level of anxiety which can translate as anxiety – duh – or OCD, or overachieving tendencies?).
    I’m shocked that any eye doctor worth his (or her) salt, could miss keratoconus. Wow. Crosslinking is an exciting new treatment, and we continue to learn more about refining the technique (perhaps using a solution to break up the epithelium a bit so that you don’t have to go through the discomfort of growing it back, for example).
    It sounds like your doctor in Baltimore is Dr. C.F? 🙂 To answer your questions, valium slowed my thinking a bit too much, but being hyperadrenergic (that rarer form of POTS), the xanax was perfect. Whatever works, my friend.
    Cymbalta — again, I was put on that when I first became sick to try to balance the brain chemistry somehow, and I went up slowly from 20mg to 60mg. The EDS specialists will often go to 120 mg for us. For me, episodes of “suicide ideation” come and go as if someone turned on and off a light switch. I think those episodes have more to do with the level of pressure on my brain at that time (too much!). After reducing my brain pressure (Diamox), I went back down to 20mg of Cymbalta. When my need for Cymbalta went down (within about 2 weeks), I felt a bit suicidal, and going down to 20mg helped. But when I went down to ZERO, I wanted to kill everyone else. (joke). So I’ve stayed at 20mg. Everyone is different, and if you decide to give it a whirl, be sure to tell your loved ones to help you watch for this, as it can really sneak up on you.
    I considered SAM-E, too, but we were afraid that the dopamine/serotonin balance was off, and having too much serotonin in that case is terrible (just google “serotonin syndrome”. Yikes. I hate to tell people this, but sometimes it is a matter of trial and error, as scary as that can sound.
    I like the looks of your “cocktail” of meds. Someone has done a great job of helping you with this!
    Hang in, Deborah! YOU are lifting us up!
    Big hug,
    Dr. Diana

  31. Yes, Dr. C.F. in Baltimore. I get to see her again this Friday. So much to ask and talk about. And yes, trial and error, paying attention, doctors who will work with me and not just work “on” me like a mechanic who does all the same model cars… it can be daunting, but worth it to gain some functionality, and not want to just about kill everyone in my path when too many bad days pile up with no supporting meds and treatment. (Oh, yes, I know what you mean!) My husband and I have an understanding, he knows when it’s the pain speaking and sometimes when I feel “it” coming I can give him an advance apology and warning. He is really good at telling me when it’s time to take my meds and take a break, too. At work I use even more precious energy “keeping my face up” and not letting “it” out of the cage. That’s why I think I should look into some more supportive therapy of some type.

    Regarding the crosslinking, I did get the epithelial layer interrupted, not stripped, in Beverly Hills. It worked really really well for me, and was the way to go, esp. considering the EDS and slow healing, already compromised epithelium all over. I think if I still had intractable eye pain and couldn’t see to read, drive and work again, I would feel completely overwhelmed.

    Thanks and Hugs!

    Deborah

  32. I have EDS Hypermobility. I have been treated for clostridium difficile (c-diff) only for it to come back 3 to 4 days after antibiodics.. About 4 years ago I was admitted into the hospital because I had an ilius. I have IBS medicine that doesnt seem to do its job either when I need to take it..

  33. I guess I should say I am still stuggling with the c-diff. I told my GI I have EDS and previous medical issues.. The local Hospital hooks me up to an IV to pump fluids back in me and Potassium… hmmm???

  34. Also, I should mention for my severe headaches. That start at the base of my skull and pressure in my ears, eyes and nose. I take Phrenlin Forte. That does wonders. Its the only medicine that I have found that helps with those severe headaches… Hope that will help others. My C1 and C2 are wired together… Phrenlin Forte there is a generic form available but any way clears all the pain for me.. 🙂

  35. I did lasiks before I knew I had EDS Hymermobility. I did it like 8 years ago. When they tested my eyes they said thick corneas. I did the surgery all the blood vessels broke in my eyes so I lookes really spookey for a while but other than that it all went well for 5 or 6 years. Now I am wearing glasses again.. 🙁

  36. Pingback: The Eyes Have (had) It « Bad Glue

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  38. Does anyone know of an EDS specialist or someone who can diagnose it in the Dallas area?