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

By: Yetta

Yetta — Tue, 15 Jan 2013 23:20:47 +0000

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By: The Eyes Have (had) It « Bad Glue

The Eyes Have (had) It « Bad Glue — Fri, 03 Feb 2012 08:42:53 +0000

[...] right now. Anyway, there’s a good PDF, “Your Eyes and Ehlers-Danlos Syndrome” at this website. It’s by an eye Dr who has Ehlers [...]

By: Teresa

Teresa — Fri, 30 Sep 2011 01:20:06 +0000

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..

By: Teresa

Teresa — Thu, 29 Sep 2011 21:10:37 +0000

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..

By: Teresa

Teresa — Wed, 28 Sep 2011 08:01:16 +0000

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???

By: Teresa

Teresa — Wed, 28 Sep 2011 07:58:29 +0000

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..

By: Deborah

Deborah — Tue, 10 May 2011 13:46:57 +0000

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

By: Diana Driscoll

Diana Driscoll — Mon, 09 May 2011 22:38:30 +0000

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

By: Deborah

Deborah — Wed, 20 Apr 2011 11:11:51 +0000

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

By: Dr. Diana

Dr. Diana — Thu, 03 Feb 2011 22:03:43 +0000

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