"Suffering the Slings and Arrows of Outrageous Fortune"

This morning we saw the physician’s asst about Em’s headaches. He had previously doubled her dose of Diamox and that has helped, but not entirely relieved the headaches. I had forgotten how much I like him – I wish he could just be our doctor and do everything we could possibly, ever need for us!

So, we agreed to play with the dose of Diamox. We are going to add in an additional dose of Diamox and see what happens. He agreed that weather changes (barometric pressure) could be affecting her. If I had to guess, I would think it is entirely possible that winter weather has tipped the balance. Maybe, if we are really, really lucky, things will settle when spring comes?  Anyway, adding an additional dose seems reasonable. He confirmed my thought that the fact that Em’s headache responded to the Diamox means that she has increased intracranial pressure. The Diamox would not have helped any other kind of headache, so I am not imagining this. Wish I was, but it is real.

Also, she has some trigger points in her neck that he thinks could be causing pain. So, he wants her to try a bit more Flexeril and do some PT to work on her neck. Again, EDS so often brings contrasting joint instability and muscle tightness. Ironically, that shoulder that the pain doctor messed a couple weeks ago during a lecture about not relying on Flexeril, seems to have triggered some major muscle spasms. I don’t think it is causing the headaches, since they occurred first but she is a mess of muscle spasms and it is not pleasant. He is ordering an x-ray of her neck and we will try to make sense of this all.

Oh, and I timidly brought up CCSVI and he didn’t laugh me out of the building. He was a bit skeptical but listened and asked questions. He totally agreed when I said I didn’t want to rush into anything but wanted it on the table if the Diamox remains only partially effective. And he told me if I could find a doctor to do it, he would refer us.

What I really love about him, is that he just believes us and totally gets what we are dealing with. As far as he is concerned, Em has high intracranial pressure. Period. He acknowledged that we are in unknown territory – that we want (need) answers and nobody, including him, really has them.

It is hard being on the fringe of medical discoveries but we don’t really have a choice. We are forging a difficult path – the road less traveled and all that. I am awfully glad to have someone along who is capable of being a good companion – I wish I could say that of all of our doctors!

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Comments on: "Plenty of Questions, few answers" (2)

  1. Hi! I’m 27 years old. Not officially diagnosed with EDS but many family members have it and I’m showing lots of symptoms. I’m in the hospital now and I had a lumbar puncture today and they warned me my headache could possibly get worse but to my surprise, it went away. Does this make any sense to you?

    • Hi Kat,
      So sorry to hear you are in the hospital and dealing with EDS. I don’t know much about lumbar punctures or why you are having an LP, but I think – depending on where the pressure is, it very well could relieve pressure, if that is the problem. It is so hard having serious problems and knowing the doctors don’t have answers. By far, that is the most frustrating part of EDS to me.

      Good luck with getting your diagnosis. A year ago on March 14 my daughter finally got diagnosed, so I will be thinking of you on that day! If indeed you have EDS, I wish you and your daughter speedy diagnoses and the best care possible. Are you familiar with the EDNF Inspire message boards? There are many, many helpful EDSers on there and, if you are not registered already, I urge you to do so and browse through the posts. There is nothing as great as being able to communicate with people who are traveling the same path. I am -Beth- on there, by the way, if you are on there already or will get on, feel free to friend me!

      Thanks for dropping by and commenting!

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