June 9, 2015 at 3:48 am #846
I’ve been having those occipital headaches that are indicated as a symptom of high CSF pressure for going on 4 years now. They started out only occasional, but lasted for about a week at a time. Now, it’s pretty much constant.
My only current diagnosis is “degenerative disc disease, cervical”, from my most recent trip to an orthopedist – based solely on an x-ray and a brief physical exam (and even briefer history). Obviously I was not happy with that! I know there’s more to this story! Aside from the fact that my x-ray also shows cervical kyphosis, which is pretty scary (and possibly because of an untreated neck injury from a car accident in 2011), I’m only 30 years old!! He told me “Go to physical therapy and take Aleve twice a day”. Hah.. sure!
Then my sister asked me if I’d ever heard of EDS, and said she thinks she has it. I’d never heard of EDS or any collagen disorders before, so I looked it up. And read. And read. And watched your videos. And read some more. And asked my mom about her and her family, asked my dad about his, and asked my brother if he has any symptoms. Sure enough, there are very clear indications that EDS/POTS/MCAD is the culprit of all our distress, fatigue, depression, chronic pain, etc, etc, etc. Going back at least to my maternal grandmother, if not further (not to mention my father’s side!).
So when I saw the post about using a soft cervical collar when I sleep in order to try and relieve some of the pressure in my neck, I thought, “Great! At the very least, I might feel better in the morning, and have a better idea of what I’m up against here. If it helps, maybe it’s high CSF.”
My headache got much, much worse. The top and sides of my head started to feel full, instead of just the back of my head and neck, I got a low grade fever, and every time I stood up (I was in bed for 3 days, but little to no sleep!) I would sneeze. Every. Time. Weird, right? I was already taking zyrtec regularly, because it works much better for me than the other kinds, so probably not allergies? I don’t know! I’m at a loss.
Did I mention the nose leaking clear fluid, almost constantly? For the last, oh, 2 years? Yeah. Surprisingly, that’s the only symptom that has stopped after trying the soft cervical collar.
I have an appointment with a general physician this Friday, because unfortunately the closest specialist to me is over 600 miles away, and I’m going in blind except for my notebook with pages and pages of family history and then pages and pages of my own symptoms. Part of this is just venting, because man am I just tired of being tired and not knowing why my body seems to hate me! But I am wondering if it’s unusual or even dangerous for me that the soft collar made my headache that much worse?
I feel like I’ve been borrowing spoons from future me for way too long already, but I’m so so relieved and glad to see that someone is on top of all this!June 9, 2015 at 6:29 pm #5519BarbaraParticipant
My experience with a soft collar was poor, it worsened my symptoms too, see my posts at:
The original Philadelphia collar, on the other hand was a lifesaver for me.June 11, 2015 at 10:30 pm #5535Dr. DianaKeymaster
Hi Sara, I went through quite a few different cervical collars, and while some were HUGELY helpful, others made me feel much worse. I am guessing that some collars work against our individual anatomy. I don’t know of an easy way to find out what may help except by trial and error. What I’ve found is that if the collar helps, it is usually indicative of high ICP. Because you may also have CSF rhinorrhea (that leak from your nose), you may benefit from Diamox to reduce your pressure. Diamox allowed me to stop using a cervical collar (after 2 years of use!). Everyone one is different, of course, but I wonder if you have tried it yet? So glad you’ve joined us! Gentle hugs…June 12, 2015 at 11:06 am #5541
Thank you Barbara for your reply! I’m thinking about looking into the kind of collar you suggested, just as soon as I have some more pocket cash. That, or I’ll have to hold off and try to get my doctor to write it off as a medical expense and get my insurance to cover it.
Hi Dr. Diana! First off, thank you for your reply, and for everything you’ve done in your search for answers!
I just got back from my first appointment with a back pain/chronic pain doctor. They drew some blood to test for (and hopefully rule out) lupus and some other things. Unfortunately, he’s not knowledgeable about EDS or JHS, but he listened to a LOT of my symptoms and dx’ed me with poly-arthritis as a starting point. I have a follow-up in two weeks to go over blood test results, and I’m hoping maybe he’ll have done a little digging into the symptoms of EDS and it’s co-morbid conditions by that time. I’ll also have to ask about Diamox and possibly a sample just to see if it helps the headaches when I go back – I was trying not to overwhelm him with a ton of new stuff all at once.
I also got a referral to a rheumatologist. It’ll be another month before that appointment, and I’m closer to some answers, but it’s a step, so fingers crossed! (Not that I’m hoping for EDS, just that I’m desperate for a diagnosis and some relief.) If it comes down to it, I’ll drive myself the 600 miles to see the nearest geneticist who’s treated EDS patients already!
Again, thank you for all you’ve done, and for all the information and helpful tips that you’ve made available to the public! I finally feel like I’ve found an explanation for my wide array of symptoms, and that I’m not just “weaker than other people” (for most of my life I thought everyone felt this way!).
Keep on keeping on, ladies! 😉June 12, 2015 at 1:07 pm #5542Dr. DianaKeymaster
Thank you for your kind words, and please keep us posted! One thing that took me years to learn was that geneticists familiar with EDS are great for diagnosing EDS and ruling out related conditions. But for treatment of comorbid symptoms? Not so much. That’s not really why we go to geneticists, if that makes any sense. But looking closely at your genes and other signs of genetic disorders — they are your go-to folks! 😉June 12, 2015 at 1:33 pm #5543
Oh, of course! You’re a beautiful, brilliant woman and the work you’ve put into understanding your own condition while simultaneously suffering from it is just amazing to me!
I’m sure they’ll be sending me to a geneticist to rule out differential diagnoses, as you said, but I just got a call from the rheumatologist’s office, and it looks like he’s getting familiar with EDS before my appointment. I’m finally (tentatively) getting my hopes up about being on the right track here.
I’ll definitely be keeping you posted, even (actually, especially!) if it turns out to be something different.
Again, thank you so much!
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