I am writing you from the bush again. And the post will be delayed, as it is no fun attempting to use painfully slow dial-up internet that runs under the lake. Mom and Dad have some good dvd’s, but there’s only so many times you can watch seasons 1 & 3 of Big Bang Theory, Aeon Flux (the movie) and Fargo. So I end up writing rather than watching hours of video streaming. It’s probably a good thing.
If I can remember correctly (ha. my memory sucks!), one of my new year’s resolutions was to keep a symptom journal. Wait, I’m sure it was a resolution of mine. I should write them down! Anyway, I haven’t remembered to keep up the symptom journal. I seem to have a couple entries from December. I guess that’s a start, but I should really continue!
Keeping a symptom journal would help me keep track of things. My complaints are so varied and ever-changing that it makes me feel a little nuts when I am trying to put it all together in my head so I can properly explain to doctors... and interested others.
In December I had a lot of symptoms I still experience today. One interesting thing I wrote down in December was that I have headaches that worsen, or are brought on much more intensely, when I bend over or look down. I still have those. I have at least a dull to moderate headache at ALL TIMES, so it is difficult for me to know how respond when doctors ask what brings on my headaches.
Anyway, my fellow EDS and Chiari friend Kristen who I finally met in person the other day (It was so cool to actually meet her! I had never met anyone else with known Chiari or EDS!) ...Anyway, Kristen mentioned that when I have nystagmus (uncontrollable eye movements) when I look down, it may be due to cranial settling and the added pressure put on the brain and brainstem that can brought on with position changes in EDS/Chiari patients. So of course, I am now wondering about those headaches that come on much stronger when I look down, and the potential cause of cranial settling. I realized not too long ago that if I lay down my headaches are almost always greatly improved within a few minutes. So, a lot of times when I have a headache I lay down, makes sense. But then I think I’m better and I sit up, and it comes back with a vengeance! ...So I lay down again. At least I figured this out! And my headaches are also better when I place my hands under the base of my skull and my jaw and pull upward. I have also read/heard that this can be a sign of cranial settling. I even have ringing in my ears that will disappear when I pull on my head!
Thankfully, laying down no longer brings on twitching (well, once in a blue moon). I think I have Lyrica to thank for that. It was a bit of a problem trying to lay down to relieve the headaches only to start twitching all over the place. And twitching can aggravate a headache, so it was confusing. In December, I wrote a lot about the twitching/convulsing/myoclonus/whatever you want to call it! I don’t have it nearly as much anymore, and it used to happen every day, sometimes multiple times a day.
Here’s a new/worsening symptom I did not mention in December, perhaps because it is embarrassing: I have to pee a lot!! At least 12 or more times a day. I have to pee right now. I didn’t until I sat up. For the last hour or so I have been either laying or standing, and then I sat for a few minutes and I had the sudden urge to pee. The other day I bent over and had the sudden urge to pee! ...I’ll be right back... ha ha... guess where I’m going! Ok, so I am always thirsty and I do drink a lot, although nothing alcoholic and rarely anything caffeinated. But even considering all the liquid I consume, I don’t understand the frequency or urgency at which I have to urinate. It doesn’t seem to make sense. I am wondering if this may be a symptom of Occult Tethered Spinal Cord, which is common with EDS and Chiari, but is a controversial subjects since many doctors believe if you can’t see a tethered cord on an MRI, it’s not tethered. However, patients with Occult (meaning invisible to MRI technology) Tethered Cord often respond well to de-tethering surgery. I wonder if some of my leg symptoms, like the reduced sensation and numbness in my lower legs, and the weakness that comes on with walking, could have to do with a tethered cord. I also get intense cramping in my calves and thighs that’s unlike pain anywhere else in my body. When I first started scouring the internet for clues to a diagnosis, I came across peripheral neuropathy. I thought that had to be it. It seemed match almost all of my initial symptoms. And oddly my Grandmother was diagnosed with Charcot Marie Tooth hereditary peripheral neuropathy, and I thought that had to be my answer. But I’ve been to 2 neurologists and it seems pretty clear that I don’t have it. However, when I was first searching I also came across Tethered Spinal Cord, which seems to have some symptoms in common with CMT. But I ruled it out since it is supposed to show up in childhood. But this is not typically the case with Occult tethered cord patients, who often have EDS.
If you want to learn more about the relationship between EDS, Chiari, and Occult (meaning invisible to MRI technology) Tethered Cord, there are educational videos available for streaming at http://www.chiariinstitute.com/Videos/index.html
This blog entry will double as my latest symptom journal entry. Although, I will not cover all of my symptoms. It would take too long
It is frustrating having to wade through all of this myself, still having little guidance from doctors. Yes, the geneticist I saw made the EDS diagnosis and knew a couple of things about EDS and Chiari, she was certainly no expert on the relationship between the two, it being poorly understood in general. There are only a few doctors in the entire world who have extensive research-based knowledge on this topic. What I’m getting at is... no one in the medical profession, in this country, that I can find, has any background in treating patients with both Chiari and EDS, and no one can offer me much help with research, and planning a course of treatment and management, so I have to do a lot of my own research or else I won’t know much at all about what’s happening to my body, and I need to know! What I’m wondering now is how are other patients managing?! There’s got to be a few of us with EDS and Chiari in Canada. What does everyone do to cope with the lack of knowledge and understanding? The types of surgeries available for Chiari in Canada are typically very unsuccessful in EDS patients. There are successful surgeries being performed just across the border in the U.S., but those surgeries are highly inaccessible to Canadians because they cost as much as a house, and I know OHIP is highly unlikely to foot the bill, being on the side of Ontario doctors. Canadian neurosurgeons think a lot differently than some of the more progressive American neurosurgeons. Older, cookie-cutter type surgical methods seem to be much preferred over newer and innovative ones, designed to fit each patient individually. Most patients with Chiari don’t have EDS (although many are probably undiagnosed!) so surgeries are not designed to fit EDS patients and often fail horribly.
At this point I am skeptical that any kind of surgery would be a good idea. I just don’t know. I have basically no options anyway. I just hope that some day I will understand how all these symptoms are interacting, and have a clearer picture of how surgery may or may not help. What sucks is I know I am declining in some ways. Despite benefits from Lyrica and acupuncture, I am having a harder time with the pain in my joints, especially in my neck and shoulders, and my headaches are really getting in the way of life.
I wonder if anyone can really “fix” this. ...ever.
But anyway, the Lyrica seems to offer sort of a band-aid for a lot of symptoms. Looking back, I had a lot of symptoms in December I am not having nearly as much these days. A lot of the particularly aggravating nerve-type pains seem much better lately, and somehow my balance is a lot better! ...? ...Weird. Maybe because Lyrica is an anti-convulsant and wobbling while walking often brought out a tremor, the tremors and the twitching and the balance are somehow connected? ...I hardly ever get hand tremors any more. I used to get them almost every day. I don’t know what is up with my left hand, but it is not as bad as before. It is much less sore and no longer tensed up and shaky. However, I think it is permanently weakened. I can’t type anymore without contorting it in a strange way so my finger joints are arched upward above my hand, while my right hand is totally relaxed while typing.
Kristen referred to surgery as a “big band-aid”. I guess you really have to weigh the pros and cons, and you are always taking some level of risk, but there is the potential that it could be very helpful, if done correctly and appropriately.
Note to self: Do not try yoga poses that involve putting all your weight on one leg! Your ankles will kill you later! Also try to avoid moves that involve putting a lot of weight on your wrists, knees and shoulders; the joints on left side of your body in particular. If you’re going to try any of this again, at least wear some braces! Every time you participate in a yoga class you hurt the same joints again that are already weak and unstable. Don’t be afraid to sit it out or wear some braces. Stop being afraid of what people think. Stop trying to do everything you used to do. You have to adjust.
Ok, I'm done talking to myself! I had a good day today (despite the yoga injuries)! My headache was mild most of the day. I was able to get a lot of activities in, rather than a lot of laying on the couch like the past few days. The headache was so bad over the weekend, I just had to lay down most of the day. I couldn’t handle reading, talking or writing. I watched some Big Bang Theory. If I thought I could’ve slept through the headache, I would’ve tried, but I find it is better to distract myself with some light television. If I try to nap, sometimes I get so focused on the pain it makes me start crying, and crying just makes the headache worse most of the time.
But not today! I’m sore and my body is tired, but my headache is still barely there. It was worse while riding in a vehicle. It was pretty bad at one point in my left temple, while on the dirt road. But then it got better again!
My left hand is working really well today! it is not tensing up at all, and it’s more relaxed while typing! Like, I notice a big difference since yesterday! Why? I don’t know! Oh well! I actually thought it was permanently damaged! I guess not!
I was a bit winded while walking the dog around the property and at times during yoga, but almost no dizziness or light headed-ness today!
I think the yoga is good for me in a lot of ways, just too hard on my joints sometimes!
My toes turned a little purple with bluish areas in yoga. I got really sweaty over a few simple stretches and warrior poses.
My eyes were darting from side to side on their own while I was typing just now. It kept happening and was getting in the way of my concentration. I was a little slumped in my seat, so I thought maybe if I re-position my head... and there you go! They’ve stopped moving on their own!
I don’t get the shooting pains I used to, and the pan in my face is much less intense lately. It feels less like it is traveling around like it did before. It stays in my cheek bone area most of the time. I don’t get as many bizarre episodes of pins and needles in my hands and feet as I used to. I get pins and needles more if I move something awkwardly and it pinches something, which I would imagine happens frequently to a lot of people. I get it more than I used to... before I was “unwell” or whatever, but it’s different than the sensations I was experiencing a few months ago, which were strange and moved around a lot for no understandable reason. I used to have a lot of pain and weird sensations all over my body, weird moving pain and tingling. I think it was nerve pain. I still get it a little from time to time, but it is much much less.
My earaches have been much better as well! I get them a little, often with a bad headache, but not for week or so. The ringing in my ears has gotten much less over the last while as well!
There it goes again! My eyes keep moving from side to side when I look at the keyboard! And then I look at the screen and it stops! So weird!
Oh yeah. I think I am developing some sort of dyslexia. I didn’t think it was possible. I will sit and stare at a word I have typed with a spellcheck red underline, and I’ll read it over and over for about 30 seconds before I realize it’s something like “moist” only I’ve spelled it with the “i” before the “o”. Maybe this just means I’m getting stupider and worse at spelling. Or maybe I am crazy.
Oh, and my legs are still somewhat numb from the knees down like they have been for a year. They are not completely numb. I have feeling, but it is not like it used to be, and it is not like other areas of my body. It is a loss of sensation. It feels as though I am wearing a pair of thin knee-high stockings all the time. And my feet get numb when they are cold, even if I insulate them with thick wool socks. When I take my socks off after being out in the cold. I often get an episode of Raynaud’s phenomenon.
There go my eyes again! Moving on their own! I keep having to glance at the keys because I got a C+ in keyboarding class and never learned to type properly!