Monday, November 29, 2010

headaches and the like

It feels as though someone is poking my left temple, through my skull and into my brain with a large blunt index finger. My cheekbones are burning, yet achy, as if the bone is burning under my skin. There is a tightening in the back of my neck, and too the sides, below my ears, and an achy tenderness a the base of my skull, and inside and behind my ears. There is also someone poking a pointed finger into my left ear, and bugs crawling in my right ear. The entire surface of my head, face and jaw, with the exception of the middle of my chin, are sore to the touch. My balance is off. My heart rate is up. My legs and arms ache. Many of my joints feel strained. My inner and outer thighs, inner arms and shoulders are sore to the touch. I feel weak and shaky. My leg muscles are twitching.

I am supposed to have finished my assignment.

I am supposed to be in class in half an hour. :-S

Saturday, November 27, 2010


I feel like I may be loosing some...

I might as well be an alien on another planet, when I think of what I might have in common with the friends I used to have. It ought to make anyone a little blue. But we do have lots in common! I am still the same in many ways! Maybe it's more about having experiences each other can relate to and understand. And it's not as if it's easy to tell whose going to get this, and who isn't. It is even hard for me to understand. Maybe that's why I feel like sometimes I can't communicate. I think there is more I have to learn. It sometimes feels like trying to learn another language. And after I learn it, I have to learn to translate it into a language that can be understood by others. Otherwise I will just continue to rely on those few friends I am so thankful for, who do seem to get it, maybe because they can relate or maybe because they just know how to read my face and my emotions when I am talking to them. Maybe they are strong enough to just listen and give me validation without having to justify it, or make sense of everything. But if I keep relying on those few who can adequately interpret my tone and expression, I will still feel alien to those who don't, or at least haven't yet. And I will continue to miss them. I don't know if it is me or them who is supposed to bridge the gap. I think it has to be both. I sometimes feel like I am screaming and no one can hear me.

Wednesday, November 24, 2010

Feet... and Good Days!

Ever find you get all emotional because you catch yourself feeling good for a change and there have just been so many bad days, and then you finally break through to a good day, and you're just overcome?

Well that happened to me today. I just caught myself dancing while doing the dishes (think I get that dancing in the kitchen thing from Mom). I haven't felt good enough to kitchen dance for weeks. Doing the dishes has been so difficult for both me and Dani. She gets intense back spasms, and I get light-headed, nauseous, shaky, and sore in the wrists, hands and legs. But not today! My headache just about back to it's "normal" dull state, and I actually have energy. And I was okay walking the dog, except for one thing.... FEET!

My feet have been turning strange colours lately, like purple and white and blotchy. I think it is a circulation problem. As it gets colder outside, my feet are numb more often (it lasts for awhile after I come in), and they are just weird. I used to be ticklish in my feet but my buddy Nick tried to surprise me by tickling my foot yesterday, and I was just like, mmm... that feels kinda nice. I can still feel things, but I am sure there is a loss of sensation in my lower legs and feet.

Tuesday, November 23, 2010

...back from walking Sadie

Well, that wasn't too bad of a dog walk, though I felt pretty dizzy and light-headed, and had to walk very slowly. Why do some human idiots feel the need to "bark" at dogs? It is not easy to walk a dog when it is upset by the fact that you are "barking" at it! I kind of want to ring the necks of the obnoxious high school students across the street! ha. Don't worry, I won't.

Here is a video of some "twitches" that kept bothering me while I was trying to do school work this past Sunday:

going a little nuts

ARGH! So, I am starting to become concerned that I may have one or more other medical conditions other than the Chiari, that are Chiari related, so of course there is no known way to test for them in Canada. ARGH!

I am feeling a little freaked out today, partly because of these "worries", and partly because I have been noticing a lot of change and development of some of my symptoms. Last night I kept feeling short of breath. Doing anything was tiring. I also had an awful headache, at the back of my head, and in my eyes and temples, and every time I moved it felt worse. I am still feeling a lot like that today, but thankfully 10 hours of sleep and some coffee, have helped a little. Also, nothing was helping last night, but then I had some gatorade, and actually got inspired to drive to rent the next disc of Heroes and put gas in the car (while Dani pumped the gas, or tried, was kind of amusing. ha). Even though as I sat at the top of the stairs to tie my shoes, I was sure I was going to fall down them head first and make a somersault to the bottom. ha.

I have been thinking more about my grandmother's death, and about asking my Mom more about it. She was diagnosed with Charcot Marie Tooth, but she had some symptoms that were not consistent with the diagnosis, and as I understand she died suddenly in her 50's of a spontaneous "blood clot", or aneurism I believe, in or near her heart. I want to ask my Mom about the details again, but I'm just not ready to bring it up. There are forms of Ehlers Danlos Syndrome (which is one of the things I'm worried I may have) that may lead to spontaneous rupture of internal organs and arteries, or aneurisms. Since many of the symptoms I have that are not "Chiari related" according to the doctors I have seen (who frankly know little about Chiari) seem like they could be signs of EDS, or at least some sort of connective tissue problem. There is a subgroup of Chiari patients who have EDS, and don't respond well to the typically performed Chiari surgeries.

Bleh! Anyway, too much to think about. I know I shouldn't get myself overly concerned, and just continue taking things day-by-day. I want to try to get my stress level down!

I have to take the dog for a walk. I used to enjoy taking her off leash and playing fetch. I also used to take her for longer walks. I am worried about the walk today. I already feel light-headed. What if I just pass out in the middle of the walk and fall unconscious on the sidewalk?! I haven't passed-out since high school, so I suppose there is nothing to worry about.

It feels like there are bugs crawling over my head. My face is so sore!

Well, a little venting always helps.

The "twitching" was becoming really weird and annoying over the weekend, but seems a bit better today. I took a video of what was happening when I was trying to do a reading for a course I am taking (thank goodness it will be over soon). School is getting to be a little bit much for me right now, but I think this is the last course I need for my b.a.! Ah, there. See! I ended on a positive note :)

Saturday, November 20, 2010

Twitches are different now...

Needles to say... it is getting in the way of things.

Here is part of something I wrote with the intention of posting as a note on facebook, but have not, however may still, anyway:

In August an MRI revealed I have a Chiari Malformation (type 1), which is a herniation of the bottom part of the cerebellum (in back of the brain) into the spinal canal. At the time I had no idea what this meant, but have since been searching for answers. There is surgery available for Chiari Malformations, involving decompression of the neck and spinal cord, and removal of some bone at the base of the skull, and possibly the top vertebrae, and also possibly “shrinking” the herniation.

At first I was not eager to sign up for this, and the doctors did not seem to think all of my symptoms could be caused by the herniation. My symptoms have changed however since I last saw a neurosurgeon, and I am learning that neurosurgeons in Canada tend to have less knowledge of the mechanisms of the disorder and the range symptoms.

I have spoken to many other patients with symptoms like mine, and other symptoms that were unusual, who benefitted from surgery. The brain is intensely complex, and it is still not known what systems CM can affect. I am unsure at this point how to pursue treatment, but I plan to seek another neurosurgeon consult, and future MRIs. Unfortunately the advanced centers in the U.S. designed to treat this disorder are not covered by OHIP, so I am likely to pursue surgery in Ontario, but as I understand it will be considered “elective”, if I do not develop any secondary problems, such as a spinal cord cyst known as a syrinx, which is somewhat common with CM.

This is some of what my day was like today, and what it is like most days lately:

This morning when I woke up it felt as if I had been sleeping on top of rocks. My neck was so extremely tense, and the headache always hits really hard first thing. It is almost impossible to think of getting out of bed, but I know my body will just feel worse if I continue sleeping. As I sit upright it feels as if my head is full of sand that shifts from side to side as my brain adjusts to being upright. My face hurts. It always does, but it’s like I have to re-adjust to certain things in the morning, like sometimes in my dreams I’m not in pain. I sometimes really want to stay in my dreams. I never feel rested. When I stand on my feet they feel full of pins and needles. My muscles ache, so I move slowly. By the time I start to walk to the bathroom I start to notice the sense of vertigo that comes and goes throughout the day.

Every time I move my head it aches. My ears always feel full, and are often achy as well. My neck also hurts a lot, especially if I’m not careful how I move it. My neck cracks about 20-30 times throughout the day, or rather it stiffens up, I feel the need to stretch it, and then it cracks and I get a temporary relief of some of the pressure and tension.

When I take the dog for a walk I usually try to avoid hills, and I can’t walk very fast or for very long. Sometimes I will unintentionally over-exert myself while walking, and I will begin to feel dizzy, and a lot of pain in my head, neck, eyes, ears and face, as well as my legs and arms which will also start to feel weak, yet also tense up. I then begin to have trouble moving my legs correctly. More frequently lately, I have started twitching involuntarily when I exert myself. I usually find somewhere to sit down for awhile, or else I tough it out and make it home, although by this time I am surely walking “funny”. Sometimes I think people are noticing, but usually people are too absorbed in whatever they’re doing to notice much.

If I try to drive, I always get a more intensified headache. My neck also becomes more tight. I find it hard to turn my head to make the necessary movements and scans for driving. My neck cracks often while driving, and I have to rest my head on the head rest or my hand. Long trips are especially difficult and I have to make a lot of stops. I also get a lot of pain in my legs, hips, hands and shoulders, which can make driving difficult.

I have to got to bed at a decent time every night. If I don’t get 10-12 hrs. rest in bed, I am in more pain and more fatigued, and am more likely to start twitching, have more nausea than usual, and/or have more dizziness and hand tremors.

There are a lot of things I am not mentioning here, however I feel that I have said enough to make a point. I don’t enjoy talking about this. I find it necessary however, since I encounter more and more people who expect me to have a normal amount of energy for a 28 year-old, even after I tell them I have a neurological disorder.

I have had this diagnosis for a short time, and am doing my best to research as much as I can about it so I can make informed decisions about my future, however I am having a difficult enough time getting through the day-to-day. As I am writing this now, I am having to fight with my eyes to focus on the text; they want to blur. I can hear my heart beating in my head and there is recurrent ringing, hissing and “wooshing” sounds in my ears. It is all rather distracting and tiring. Of particular concern lately has been the twitching which makes it difficult to relax or focus on anything, but is not typically reported in CM cases. Anyhow, I will continue my self-directed research, and try to maintain some degree of “normalcy” and sanity in my life. I am still working part time, and finishing a course. But I have been cutting back shifts and missing classes, and am pretty overwhelmed to say the least. What also makes it difficult, is that to others I look “fine”, and not like someone who is “sick”. I am grateful that the problem might be treatable, and that I am still able to take care of myself for the most part, but there are those scary times when I’m not sure if I really can, or for how long. I’ve been trying too look at life as one day at a time, but It’s been day after day of struggling to get up the same hill, and it just keeps getting higher and steeper. (Sounds like a bad pop country song, but you get what I mean.)

I have found a lot of hope in connecting with other people with CM over the web. There are also a lot of really awesome websites. I don’t want to overwhelm, so this is the one I will admit I have been finding the most resourceful lately:

The ‘Education’ and ‘Awareness’ sections are particularly good to start with.