Howdy Hydrocephalus

Understanding my unique gyroscope


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Daith Piercings & the Migraine Hoopla

My brain doctor had mentioned getting this piercing done about two years ago. I was hesitant as piercings and often do not get along. I always was sensitive with puffy and burning ears not matter what metals I had in my ears. Plus I was skeptical about if a piercing would work to help alleviate migraine pain.

About ten weeks ago, a friend who was frustrated with getting migraines 4-5 times a week took the plunge and had Daith piercings done. BTW Daith is pronounced not like faith but instead like moth so Doth although the spelling would not suggest that. In the time that she had her piercings done, she had only one full blown migraine. She would still feel pressure but it would not progress any further.

On April 25 I went into a local Doctor’s office to have my Botox done. The nurse who put my needles in my head never worked with me before. She didn’t want to put extra needles in the places where I usually have them. I explained that my eye has never dropped before. Instead she put needles in my cheek bone…wha… and left feeling frustrated and not heard. Some people just get all huffy and in your face when you try to explain where the needles are usually placed. Crap it is my body and I am not shitting you she overrode anything I said as “That brain injured girls doesn’t know shit”. Needless to say I waited two weeks for the Botox to kick in. I felt horrible. I phoned back to the office and played telephone tag with the nurse. She left some gruff messages. I finally got a hold of her and she was not friendly but acting like I was scamming her. Meanwhile I was in bed, not eating, feeling sick to my stomach with the pain. The only time she could squeeze me in was when I was in Calgary for another appointment.  So on May 12, I could feel a storm coming in. I was laid up in bed, my right eye watering and feeling horrible. I looked online yet again at all the info about Daith piercings. There seemed to be a 50-50 chance it might work. Many pages indicated that Daith piercings used accupunctor points, but upon searching, I found that this was not true. The acupuncture points were no where near the piercing location. But then I thought about acupressure points and then my troublesome Vargas Nerve that was responsible for my slow digestion, motility, wack body temperature, swallowing and my stutter. I learned about this nerve from my speech pathologist when I was learning not to stutter. It is a very large branching nerve that basically goes all over the body and because of that is called the wandering nerve. One of the points on my head that I press down when in pain from the 24/7 migraine is apart of this nerve system. I looked up where it went and the nerve extends to where the piercing is located. 

So with that in mind, I called the place that did my friend’s piercing and they told me to come down. I drove…I shouldn’t have driven because my vision was not the best, my eye was continuously tearing, the nerve tingling was all over my face, chest and right side; the pressure was so much I though my head was going to explode and I was not really sure if my right leg would cooperate as I drove but I got there. I walked in and she took one look at me and said “you are in pain…right?” Oh yeah I was. I sat down in the chair and she got things ready.

I had the piercing done. It was super quick. I didn’t hurt when she did the one ear but the other when she put the needle from the bottom up hurt more. Nothing Like the migraine pain or 40 needle pain or labor pain. But I may not be the right person to talk about pain levels as my tolerance is a little high. I had both ears done.

Instantly the pressure in my head felt lighter and my eye stopped tearing. It was a weird feeling…there is no way I can describe it. I walked back to my car when the thunder and lightening started. I felt decent. I was skeptical there is no way this really should have worked…really there is only people’s written experience – no backed science.  Actually I am still skeptical still and now it is almost three weeks in. Is it the placebo affect or did it put pressure on the nerve…who the heck knows.

The weather is just finishing up a huge low pressure system with strong winds that they predicted an inland cyclone but winds didn’t get that strong here but where 80-90km/hr instead. This would have put me in bed the day before the storm to the day after the storm. Right now it is still windy with gusts of 50km/hr and I am still standing and functioning which is amazing. It is not to say that I never felt anything.  I felt like I was walking through gauze the first day. Yesterday and today I feel a little pain over my eyebrow at my regular point, my right forearm and shin felt like wood, there was tingling like crazy and my eye watered only a little. This is a big improvement on my ability to function.

So what can I say. I hope that my piercings heal well and my body does not reject the metal. I am still treating this as my own personal experiment. So I must thank that huffy and grumpy nurse for not listening to me as now I have another potential tool in my arsenal of migraine fighters. My expectations are different than most; I will take any relief. I also do not expect anything to ever fully get rid of my pain or make me back to normal. This is how it is. However, if there can be any tools that can help allievate or minimize the symptoms then it is a win. I am still uncertain if it is working or if it just me wanting to work, but I don’t know if I really believed it would work so I am left a little confused on the whole thing. I think I will just keep monitoring and leave it as a wait and see type of experiment.

Here hoping that you have a pain free or as little pain as possible day. Cheers to you as I put rocks in my pocket before going out side so I don’t blow away!


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I’m Back

Wow this summer has been one wild ride. My pain levels have been managed with my new med mix. This left me with having energy but with a brain with racing thoughts, low attention and a go-go-go never stop type until you drop type of mentality.

So I just let everything go and enjoyed just being able to actually be a apart of life a lot more. I had a fun summer with the boys. We had no routine, schedule or things planned other than our trip to Vancouver Island.

The boys ran crazy; they were a part of their own wild thing type of clan. I have no idea how much they showered (if any); when or what they ate (probably mostly junk food); how many hours of video gaming (The gaming machine did not overheat); how many hours of hockey, football, basketball, swimming or lacrosse (garage door & car dents accounted for). It is all a blur of running boys, inside outside upside down with a trail dirty cups, spilled popcorn, granola bar wrappers, shoes, wet swim suits and piles of dirty laundry and hidden smelly socks in various furniture.

I was unable to sit down and write. I physically could not site still to read, draw, let alone write. I really wanted to share this summer. There were so many obstacles that I have finally overcome. But my TBI brain wouldn’t allow me to focus on intelligent conversation, sustained attention and unjumbled thoughts. I am glad that I let my body adjust to the meds and let things come back to even keel as now it is mid October and I am able to sit still long enough and write. I actually did begin October 2, but I have no idea where my draft went…somewhere floating in some random person’s email probably.

Then my son broke his leg October 3 and we have been adjusting to that. Talk about mess up my morning routine (LOL) I do my best and some days we are on time for school and others we are not. At least I haven’t forgotten a kid yet.

I passed my 3rd year brain surgery September 4 and my first year Steven-Johnson’s Syndrome (SJS) recovery September 5 with some major recovery milestones. Pain mostly controlled. I still feel tingling and fire ants on my right side. My right side aches when I do too much. I can live with that! But I am doing oh so much more. I still require my naps to be functional, but they are not all day naps unless I go hard core non-stop for a bit. I can live with that! I still get headaches and migraines but they have an beginning and a end rather than a continuous pain that doesn’t end. I can live with that!

I still have sensitive skin, itchy skin and rashes still. I am hoping we can get a handle on this as I hate having lots of cuts and scabs on my arms, legs and back. I am looking like a drug addict. The intense itching really bugs me. I am glad that my mouth only gets irritated once or twice month. I can even floss my teeth now. It takes a lot of energy not focus on the itching. At night it is really bad.

Believe me I am ecstatic about all the positive milestones in my recovery and I don’t focus on my annoyances of this recovery, but i still one not to settle. I am beginning to focus on my next milestones. Sustained energy and steady cognitive improvement. I can see work in the future. I have no clue what type of work, but it does seem more obtainable now!

So I am back not only from my break from writing but I AM BACK to land of living instead of sitting on the sidelines. It just makes it easier to live a meaninful life when not in as much pain.


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Feel-good strategies for managing chronic conditions

I have practised the art of gratitude for a number of years now and have used affirmations since I was a late teen. I graduated from my therapy about this time last year. I have continued to learn and practice the art of being happy, being in the moment and living with mindfulness.

I tend to still do too much and get hit hard with the fatigue. With the fatigue, I feel the guilt from family and with that creates an emotional downhill spiral. The same sort of thing happens when trying new meds. You take a long time tirating up in hopes that your body responds positively. But if the drug is not the right one for you; you then have to endure the nasty side effects as you tirate down only to do it again and again in hopes that you will find the one combo of drugs that actually works for you.  If you didn’t have some strategies to make you feel good, it is easy to feel angry, bitter, depressed, helpless, inadequate, worthless and all those other negative feelings that take up a lot of time and energy that could be re-directed elsewhere in your life.

Over the last year, I have been putting a lot of strategies into practise and have noticed it paying off. For example, mindfulness slowing me down. I am actually thinking “do I really need to do this…how will it impact me…my family…etc….” I have recently began adding more creativeness in my life by trying to do art more frequently.

All these activities sound like nice frou frou fanciful recreational only type things. However for a person with a Traumatic Brain Injury (TBI) or Aquired Brain Injury (ABI) these activities are crucial for developing new neural pathways for recovery. They work on both emotional and executive function areas.

I am addicted to all those affirmations that you find on Twitter, Facebook or other numerous social sites. I know that people scoff at them and find them annoying but I love them. If I read an affirmation that I like or that a friend of mine might want to read I save it on my phone. Whenever, I am feeling down, or overwhelmed, I scroll through my file folder. It doesn’t take many files before I am feeling better. This slows me down enough for me to remember to breathe, clear my head and re-direct. It allows me to pseudo-meditate as I focus on listing off in my head what I am grateful for in my life. It allows me to then see if it is worth it to spend my energy feeling the way I am. Sometimes yes & sometimes  no.

I know that some people do not believe in creative, gratitude, happiness or laughter methods. No these activities can not replace medicine for your anxiety or depression, but can be used in conjunction to help cope with stressors in a positive or proactive way. When you have a chronic condition or invisible illness you fight with negative emotions everyday that can spur from pain to not feeling included in your community. No one wants to be a perceived non-productive member, or to always be in uncomfortable or in pain or sleep deprived. We all want to be included – even in small ways. We all want that range of motion or more of those days where it doesn’t hurt physically or to have the good days outnumber the bad days. We do not want to choose between a long list of “have tos” and commitments because the tank is running on empty. Practicing gratitude, creativity, happiness and laughter methods help me to not be enveloped in a sea of black and negativeness. This is where the “fake it until you make it” can really come in handy. A change of perception can do wonders. Here are some affirmations that I have grabbed from my phone. Enjoy & hope you feel better after you read them.


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Stevens-Johnson Syndrome

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Stevens-Johnson Syndrome or SJS for short is a rare skin condition that affects the skin. It causes skin to turn red or purple and peel away from the body. It also affects the mucus membraines or moist skin in mouth, nose, eyes includiing other body parts. SJS can be caused by viral infections, some cancers, geneitics and between 100-200 different types of medicine. Wikipedia indicates that there are anywhere between “2.6 to 6.1 cases per million people per year. In United States there are about 300new diagnoses per year”.

SJS can quickly become worse and become toxic epidermal necrolysis or TEN. The amount of body surface and severity is a way to classify between the two disorders. Where 3-10% of coverge of blisters of lesions on body is classified as SJS. 11-30% is considered SJS/TENS overlap and more than 10% is considered TENS. The mortality rate goes up exponentially too with more body covereage.

This is my story with SJS.
August 5, 2014. Go to family physician & begin to tirate up on lamotragine. keep lyrica the same

August 22 energy improved. clear headed. camping – feel weak. have drenching night sweats. shake it off as withdrawal from dosing down all the way off lyrica

august 26 up to maintenance dose of lamotratine. still have sweats

august 29-31 feel like have stomach flu. can’t eat. feel sick to stomach. face breaks out in rash.

sept 2 blisters on left hand and ring finger. rash has gotten worse, face, neck upper back. can’t wear wedding ring. left lymph node in neck bulging and very sore.

sept 4th go to walk in rash on arms & legs & stomach. get urine and blood tests. doc says most likely mono but extreme they may need to do biopsy on lymph node no energy. My right side started sagging more and drool would just come down my face.

sept 5th. never had cold sore and only small canker sores. mouth big blisters inside. lips and neck and face begin to swell. barely can walk. skin turned red. Even softest cloth are burning painful. No tags, light weight cotton tank top (no bra) & yoga shorts.

sept 6th morning bottom and upper lips fused together and completely bloody & raw. diffuse with warm water. mouth is covered in white stuff (later dead skin). barely can open mouth. face and neck ballooned. Rub my arms and legs and my skin would peel off like a sun burn. Hot burning pain. Itchy. Eyes starting to get red & gloopy. Hair is falling out on my head. I can barely keep awake. chris comes home late from work & tells me to go to ER because it looks like I have been in a car accident. I have seen myself all day and am in denial. I phone health link they tell me to go to ER within 4 hours. I have trouble swallowing.

I go to Emerg around 8:00pm. Not busy but still 3.5 hours to be seen, two sprains where seen before me. Wait in the non-emergency cubicle and debate whether I need to just go home. I finally see a Doc who asks me questions, takes a look at my meds & then leaves for 5 minutes and comes back to then say he is admitting me for SJS. by 12:30 i have a bed in the ER and I start prednisone & bennadryl. At 3:45am a room opens up and I am taken upstairs.

The next day the doctor who is my on floor physician was the one who saw me at walk in. He asks me tons of questions to what seems like to deny the ER diagnosis because he didn’t catch it. Did I eat anything, wash with anything new. Exposed to stuff. The questions were ridiculous. He asks me if I left a tampon in and if I have toxic shock. i said no. He then goes can you be sure. So all humilty left at the door, we do a vag exam there. No nothing left. I am not feeling confident with this Doc as he left me in extreme pain and it waned even further when Chris talked with him.

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I am so grateful for the ER doc and catching it. He is my hero! He took his time, listened to me, looked at all the visual symptoms and did some quick research. The information that the nurses gave me was really scary and the mortality from SJS goes up quickly. I know that I was a totally anomoly in the ward. So many of the nurses had said that they had never seen a patient with SJS. When I had a big flare up, I was scared they didn’t have a handle on this and I was going to die.

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Stayed in Hospital 6 days. On IV continuously for all but a test 8 hours where I flared up big time so they put me back on IV. I was given IV for fluids & nutrition, Benadryl to help with itching, prednisone to take away swelling and inflammation. I took pain meds & metonia by mouth. It would take me 5 minutes to try to use a straw to suck up 1 tsp of water. My mouth was raw & swollen. I could barely open my mouth & couldn’t stick out my tongue. At night I felt that I was choking on my own blood & didn’t sleep for long periods of time and on an angle. My eyes were itchy & sore and I was given drops so my eyes wouldn’t stick together and I wouldn’t become blind. I was given a grainy steroid cream for my lips that was like sandpaper but in gel format.

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My lips had to have muko gel on them constantly & they would peel off in chunks. I was given an antiseptic mouth rinse & foam tooth brush to basically put myself through pure torture four times a day or searing pain, blood, skin and pus.. Finally I was given another type of mouth rinse that numbs rather than makes you cry.

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I didn’t realize how badly my breathing was obstructed until day 5 when I could actually breath easily. My skin would peel off my forehead. People would look at you with this kind of scared to respond type of look. They were horrified but still couldn’t look away. When I had my brain surgery the kids spent time with me. This time in the hospital there were there only once. You could tell they were scared to look or come sit with me on the bed. I could barely talk. I would drool out my right side.

I could not eat, barely drink so I was on 5 days of a liquid only diet. Then a day of soft. I am a week out of hospital and ate pizza tonight.

When the swelling started to subside and pain pills working, I would joke with the nursing staff that now I was not in the hospital but in a very expensive spa on a detox diet, having plenty of rest & daily chemical peels. Nothing but the best for me.

I have been home from hospital a week and I am starting to get energy & eat. I am still having small flares inside & outside mouth and chest. I still get the heebie geebies when I think of everything but a freak thing like this will not get me down.

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In a What?

Found unpublished from December 2012
So basically I go back and forth believing I have right-sided inattention. I guess this is common for most people with inattention, they don’t realize that they have it and think that the Docs and therapists are the crazy people. So basically there is theoretically nothing wrong with my right eye, arm or leg. The brain has become a little haywire and doesn’t always acknowledge that right leg or arm exist. I do not have it severe but I will drop things from my right hand. On my first morning back home for Christmas days off from rehab, I got up to walk to find that my right leg was like a stump. It was not walking normal. I had worked for over one week to get walking back with proper heel toe, heel toe motion and without thinking about it. I forced to walk normally and in return my leg paid me back by giving me a burning sensation. when I first started working my right leg, the calf muscle was in a tight ball for almost a week and my leg had a burning/tingling/crawling/shooting sensations. .


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 It is no fun to be on the sidelines just lying in bed. Not even sleeping – just breathing and visualizing to make it through the pain. My current operating system does not run smoothly but goes in waves of energy. Sometimes I do stuff until I drop from exhaustion because I am trying not to focus on the pain.  Then I collapse on the bed and my right eye tears and right side of body then shuts off.  I can feel it – first the face then down and below the elbow and then leg.  I have to try with all my might to lift my arm.  It feels like it is paralyzed.  After an hour or two or three or or four, I am able to move again without concentrating.  I am dazed, confused, dehydrated, dizzy but up and ready to be apart of life again.  I think my weird stop, drop and roll into bed behaviour is like or really is a hemiplegic migraine. I know that they have tagged me as having a chronic daily migraine with ice pick clusters. I am not a chronic migrainer from overuse of over the counter pain meds, but instead from over excitement of neural pathways that have not calmed down after surgery.

I try to keep a headache diary but it gets old from putting down the same information daily.  Usually the pain or body shutdown hits around the same time everyday. 

I feel like superwoman on the rare day that I have not pain.  Then I go crazy and of course overdo it.  I really have to watch for dehydration.  I avoid chocolate, red wine, moldy cheese and most of the food triggers except caffeine (cappuccino is my treat)I try to be prepared for loud noises or prolonged loud noises with ear plugs (if if remember them) or I take the energy hit and sacrifice some up time at home. I try to watch for bright lights or those nasty fluorescent lights by wearing tinted glasses until you of course break both pairs by kneeling on them. I try to use ice or let cold air hit my face – it doesn’t stop the pain but lessens it.

Most days this is how I feel. A mixed media piece I created as part of my personal art therapy journey.Self Portrait Mixed Media
and this is my view. An iPhone pick of how I seem to be there but not really exist.
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The doctors and I have tried all sorts of different meds. In February, the decision was made to try Botox as a way to desensitize my overactive neurons. It took a several months to get extended health approval as this is an expensive procedure. So on April 24, 2014 I was injected with 31 needles. When being injected, there is pain, my right forehead felt a little uncomfortable, but it has less feeling than the left anyway. When she injected the left side it felt like “holy shit burning acid being injected” I have no idea why people just like their wrinkles rather than put up with that pain. I was injected in my temples, various other places on head, neck and upper shoulders. The injection time took about 15 minutes or less (felt more) and I can still see injection sites on my forehead. Mostly it was quick and didn’t have too much pain. I just was not expecting to feel the Botox to be felt going in – No one warns you about this. However, this $1000 procedure is worth every penny if it works and I am not sidelined from life too much.

I didn’t notice anything significant right away. My head felt like lead and I can’t really raise my eyebrows at all. However after two weeks, there is some positive results. My pain is still there but dulled and I have had some sidelining attacks but I am currently writing on the computer without tinted lenses. My Neurologist says that we have to give this type of treatment at least three tries and then evaluate it’s success. So far I am positive and fingers crossed that we re-route the over active brain activity to a more important part like my right side of my body.

Here’s to being positive and changing my views on a the use of a beauty product for my brain. Oh how High maintenance I am (LOL)


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The Day After

Lines on my forehead

Well like anything, I had the highs of seeing immediate improvement to the lows of pain and throwing up at 10:30pm yesterday.  Between 3:00-9:00 everyone was impressed with my improvement, then I began to run a fever, the brain swelling kicked in and Bammm! I was not doing well…I lying in bed wtih a ton of blankets, teeth chattering, sweat beading of my forehead, kinda delirious because of the head pain.  I was not scheduled for Tylenol for another three hours but they give me the option of Oxycontin or morphine.  I know I do not do well with any type of pain-killer other than regular Tylenol.  They give me a pill and sure enough, the puking starts…great I am throwing up beef barely soup (which I will never eat again) and the action of throwing up is making my head hurt immensely. I am given an IV of gravel to help ease my crazy stomach. It takes until 2:00pm September 5, 2012 for me to feel better. I get a to use a face cloth to wash off the iodine and blood off my forehead only to discover that there are lines drawn on my scalp marking the location of the entry point.  I feel like I have a highway up there.  Maybe that is why there is pain.

I want to leave because this place is claustrophobic in a sad sense.  There is a lady who is in her late 30’s who had a bad stroke, a guy in his 30’s who got sick and his brain got infected and many others in states of disrepair. There is a lady who went for brain tumor removal to find out that it a death sentence where she only has a few months to live. Then there is me.  I am a little uncomfortable – headaches, tenderness are to be expected. I run a fever on and off so really I am in good shape and things in life could be way worse.   I have been tested by the Occupational Therapist and brain injury relearning is being set up in Medicine Hat and in Calgary.  My physiotherapy assessment rocked so I am good to go and do things when the Doctor says it is okay.  I am told six – eight weeks of walking as my  “heavy” activity.  Action plans are being drawn up for me when I am released.  I am good hands.

I was to have an MRI today but who knows when, It is now 7:30pm and I haven’t been called down.  Last night they took blood at 2:00am and the residents did rounds at 6:00am so I may get a midnight call for an MRI.  The positive news is that I have been moved from the acute side to the Almost good to go side!  I am now in a room with my own washroom, television and the best view in Calgary. Even my nurse (Michael) says it is the best view.  He thinks that is should actually be a view for a nice restaurant instead of a hospital room.  I can see the Bow River, Calgary city Centre, McMann Stadium.  I am lucky.  Tomorrow should be sunny so I can  hopefully get a better picture.  I already can tell sleep will be better tonight, my head is not so tender or sore.  so here is for a great night’s rest and a release for sometime tomorrow!

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