what’s in a name?

Ehlers-Danlos Syndrome, Hypermobility Type

Disease characteristics. Ehlers-Danlos syndrome (EDS), hypermobility type is generally considered the least severe type of EDS, although significant complications, primarily musculoskeletal, can and do occur. The skin is often soft or velvety and may be mildly hyperextensible. Subluxations and dislocations are common; they may occur spontaneously or with minimal trauma and can be acutely painful. Degenerative joint disease is common. Chronic pain, distinct from that associated with acute dislocations, is a serious complication of the condition and can be both physically and psychologically disabling. Easy bruising is common. Functional bowel disorders are likely underrecognized. Autonomic dysfunction, such as orthostatic intolerance, may also be seen. Aortic root dilation is typically of a mild degree with no increased risk of dissection in the absence of significant dilation. Psychological dysfunction, psychosocial impairment, and emotional problems are common.

From Levy HP. Ehlers-Danlos Syndrome, Hypermobility Type. 2004 Oct 22 [Updated 2012 Sep 13]. In: Pagon RA, Bird TD, Dolan CR, et al., editors. GeneReviews™ [Internet]. Seattle (WA): University of Washington, Seattle; 1993-.Available from: http://www.ncbi.nlm.nih.gov/books/NBK1279/

I had an appointment with a new dentist yesterday, a group at The Grandaddy of all local B.A.T.H.s.  On the substantial intake paperwork, I noted under “serious diseases” that I had Ehlers-Danlos Type III/Hypermobility.  Would it be too bad of a pun to  say that the reaction I received was literally jaw dropping?  Both the dentist and the hygienist knew what it was and what some of the implications were for things like chronic  pain, orthostatic intolerance, buising…all of which feature into dental care in a big way.   I am stunned.  This is not a disease I have been entirely at ease with in terms of diagnosis, however the clinical picture does fit me exceptionally well.  If it turns out that the name is not right, that there is some other pathology at play, well, when medical science catches up I am open to changing gears.  But for now, I’m sticking with the “if it looks like a duck…” standard.  Having a name for the clinical spectrum of misery is exceptionally convenient.  This is the first time I have actually been able to successfully use it in a health care setting.  I am thrilled.  Truly.

So our plan is to work on the metal fillings slowly and remove them one at a time with me very premedicated on benadryl and whatever other allergy meds I can get my hands on (minus steroids, they really don’t treat me well).  After reading the reports on my metal allergies, including a severe reaction to nickel and palladium (both of which can be found in some dental amalgams), my new dentist voiced concern about drilling them out.  I share that concern but underscored to her that while I am not certain the metal fillings are causing so much of the mouth and GI problems I’ve been having since they were installed in my head, I’m convinced there’s at least a  good chance these things will improve if they are removed.  My quality of life is not great and I can improve it, I want to.

It is a little scary.  She raised the concern of anaphylaxis from the vaporized metals during the removal.  The dental group’s office is mere steps away from The B.A.T.H. though, so if I’m going to risk it, I think this is the place to do it.

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  1. There was a patient at Dr. Alternative’s practice whose heavy metal levels were of the charts after having her metal fillings removed. We often chatted over IVs. You might want to look into some of the alternative hippie dippy stuff because those vaporized metals do enter the blood stream and collect in tissue in which case you’ll want a plan for their removal.

    • That’s a good point. I’ve wondered about that, how long it will take to get the metal out of my system. I think chelation therapy is pretty pricey but I’ll look into other options.

  2. I think chelation at my Dr Alternative’s office is something like $300 which isn’t horrible, but then you have to pay the first visit fee too of $199. My understanding in speaking with the patient was that they had protocols in place to remove the vapor that failed. I’m not sure what the protocols are but maybe ask your dentist and get a second opinion from a biologic dentist (I think they are called).

  3. My daughter suffers from EDS Type III. “Official diagnosis” pending but very little doubt… She just went to the dentist today. Sooooo many things to know about. Thank you!

    • Hi S! Thanks for stopping by.

      I hope her dentist is compassionate and understanding. Laying in a chair for the duration of just a cleaning with your jaw open wide and head wayyyy back…it can be rough. Does she get low blood pressure too? Even when my jaw and neck don’t get too out of whack when they’re done at the dentist, I always have to get up very slowly or risk passing out.

      • Last night she was in excruciating pain – her jaw from having her mouth opened for twenty minutes or so. I hadn’t thought of that… I will make sure to speak to my dentist. They know she is ill but I don’t think they have any ideas of the implications of EDS. The blood pressure for her is the worst part of the illness. Like you she cannot stand to quickly. She gets into pre-syncope episodes all the time. She has been out of school for 6 years now because of low energy, anxiety, and the works. I feels unbelievable to me to speak to someone like you as “we” as the mother of and the sick child, have been misunderstood for so long…. How do you control the blood pressure issue or is there nothing that can be done???

  4. Sorry, in such a rush to get out this morning… all these typos…

  5. On the blood pressure: I was advised to use compression hose. I don’t, because I also get so overheated (no idea what that’s about, more autonomic dysfunction?) But now that it’s getting cold I might give them a try. It’s been tough at work the past few weeks. There were a few days where I was really worried I was going to pass out and had to really reign in what I was doing so I wouldn’t increase the risk. Now that it’s cold and I’m finding myself actually not hot all the time, I do want to the hose. My primary care told me about some seriously major compression stuff, I’ll look it up and post to you. I can’t remember what it was called, but it came up when he was telling me about a woman with severe hypotension who was having serious problems being upright.

    Also, salt tablets. I don’t do them since I’m already carrying a purse full of pills around but I do keep pretzels and water with me at work and I’ve found pounding a cup of cold water and eating a medium sized bag of very salty pretzels around 4:00 PM leaves me feeling much better during my evening commute home from work. A cardiologist gave me the “pounding a cup of cold water” trick. She took my BP in her office and was just like, hey why don’t you lay down while I go get you a salty snack and some cold water. No seriously LIE DOWN. Apparently you have to drink the water rather quickly, i.e. you can’t sip it, you’ve gotta “chug” it. And it has to be relatively cold. I guess it triggers some kind of reflex that raises your BP. It’s temporary but boy, what a nice feeling of relief for a while!

    I also get accommodations at work. I have an office and a couch, so I can lay down if I’m having a bad blood pressure episode. It is a godsend. And lastly, I get IV hydration now and then outpatient at times when my GI symptoms are bad and I get dehydrated on top of the already low BP.

    The dentist had recommended using a pediatric sized bite block for me during procedures, to take the strain off my jaw. I didn’t need it for the cleaning but I think for any work they do, I will try it. Maybe it could help if they used something like that for your daughter, and some kind of padding/cushioning for her neck.

    I used to pass out a lot. In high school it was a monthly occurence. Some of it was hypoglycemia, but the way I look at it is I walk around with a systolic BP in the 80s often and it really doesn’t take much to get your faint on when your “baseline” is that low. It’s gotten better mostly because I’ve gotten better at managing it I think. Also, it’s better for me to NOT get up and out fast in the AM. Up and out fast = fuzzy rotten day feeling crappy. It’s hard to adjust to, people think you’re lazy, you think you’re lazy, and sometimes even the adjustments don’t help and so I have to just spend some quality time with the couch.

  6. Thank you so much for all of this! On the overheated question, I don’t know if this is what you are talking about, but my daughter had a period of years were she was so hot she had to be in front of a fan all day as well as all night long. It was awful. Because she is suffering from hypothyroidism, the endocrinologist at the time kept saying that it didn’t make sense and that it couldn’t be. For some reason, for the last six months, she is now cold and not suffering from overheating anymore. What a relief.

    About the salt tablets and the rest, we are waiting for a cardiologist who has experience with EDS to see her. In the meantime, I make her popcorn (home-made) with loads of salt. I will have her try the cold water trick, see how it makes her feel. And for the “couch”, she is keeping herself from going anywhere because she needs to lie down all the time. On very bad days, she can’t even sit.

    • I looked up the water thing: http://circ.ahajournals.org/content/101/5/504.long
      It’s called a “pressor response”. I guess there can be an overshoot, so she should check her BP before and after. The peak post drinking BP should be around 35 minutes after, according to the article.

      She sounds like how I feel in the summer. I dread summertime now.

      Amazing how it never seems to make sense to the docs, isn’t it? My overheating is being chalked up to “early menopause” by idiots who know nothing about endocrine or women’s health (see my posts on the worst GI doc in the world). I still have no idea what it is, but my money’s on another manifestation of the autonomic shenanigans.

  1. standing by « Final Trick

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