Howdy Hydrocephalus

Understanding my unique gyroscope


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Daily Chronic

download (1)     Yup I am a daily chronic migraine sufferer. That means I basically have a moderate to severe headache 24/7. It really does just suck. It is not just a headache. For me I can get an aura of losing vision, dots or zig zag lines. I become even more light, noise and smell sensitive. My right eye starts to act up and vision gets all funky. My left eye and my right eye will tear. My right side gets all numb and tingly. My perception goes and my balance is also affected. I often feel sick to my stomach. The headaches range anywhere from a constant 5 until a 8. I never say ten because that on my scale would mean death. I am fortunate to be a red head so I have some freaky weird higher than normal pain tolerance. However when my head pains spikes to severe, the pressure from inside my skull always feels like it wants to blast out from my head. It gets so bad that my scalp and hair even hurt. All I want to do is sleep, but at the same time I can not sleep because it hurts so bad. So I breathe, close my eyes; try to read; try to surf the net; try to just be. For two nights, it has been that type of night. Last night I had red wine to help relax me so I could go to sleep easier.  However, Friday night meant that I wait out the pain until I pass out from being tired. I have no idea how late I was up friday night, but it was long after I put toothfairy money under my son’s pillow at 1:00am.

There is no one answer to get this beast of a life killer under control. We have been struggling to find an answer for three years. There is has been much trial and error to find the right combination with the least amount of side effects. Basically I am a guinea pig. This is not a quick process. After brain surgery, I was on at least 12 different meds at one time. I was an over medicated zombie. We had no idea what was working and what was making it worse. So the neurologist and us decreased and came off of all but one medicine. Then we started adding some back in. It takes time to see if works. First you need to tirate up to a working dose. This takes time. Then you stay at a maintenance dose for at least two/three months. During this time you determine if you can live with the side effects. If not, you then tirate down and start all over again. It is not only emotionally draining as you get your hopes up that this new little pill will be the miracle drug, it is also physically draining as your body may react in weird ways such as muscle aches, pains, rashes, weight gain,fatigue, low blood pressure, fainting, dizziness, bloating, constipation, nausea, sleep disturbances, depression, anxiety and numerous other not so fun stuff. Basically you are put through the ringer. First off you do not have any pain-free or very little pain-free days and then you don’t know if what you are taking will be worse than the pain itself.kelly dec 2014 568

To treat this you take many different drugs from many different drug families. You change your diet, try alternative methods, take vitamins and basically try anything that will help you – even if it is a minor way. We have been trying to find a preventative that works as two found triggers other than the hydrocephalus induced were weather and hormones. I was completely out for the count for a minimun of 18 days per month but more like 22 days on average. That meant that life really just sucked poop.

We started with a variety of antidepressants because I was experiencing high anxiety. I was given Prozac – zombie to Zoloftt – manic, Amitriptyline – angry zombie, My body decided it like Pristiq.

This did not solve my headaches. I began to track my headaches to find a trigger. I tried various diets to see if they had any affect as well. My neurologist put me on a regime of vitamins. I don’t know if they have any affect at all but I continue to take as they are all good for me.

We tried calcium channel blocker Verapamil. This did not work well at all with my already low blood pressure. I could barely walk down a hallway without almost passing out. I also didn’t appreciate the dizziness.

Next we tried anti-seizure medication. There were plenty of these meds that I tried. All with not very successful. Topamax or often lovingly referred as Dopamax made me dumb as a post and my neurogenic pain went crazy. Gabapentin, pregabalin and lamotragine are the only ones that I remember.

images (2)The most successful treatment so far has been the use of Botox. It doesn’t work 100% and we have been trying to find a combo that works great. We started last year and after the first two weeks, there was a success. I was not bed ridden for most of the month, but able to get up and do stuff. Full blown migraines were not as bad. We did find a combo that did appear to work together. It was Lamotragine. I was able to get out and be active. all was going well until we hit the seven week mark where my body decided it didn’t like the drug and responded with Steven-Johnson’s Syndrome.

Since then we have tried Beta-Blockers which have been horrid. They decreased my blood pressure so much that I could barely walk up stairs. My hands and feet were so cold that they were purple and all I did was sleep. Plus they never worked really anyway.

imagesSo why the long history of drug trials and errors. Well my Botox bascially wore of at the beginning of the first week of April and my appointment to get re-shot up is May 8th. All I can say is that it has been hell. The pain has been back in full blown intensity. I am sucking at life again. I have not been to my little art studio. I was laid up in bed and thinking what could I do to end this pain. I was to the point of messaging someone for weed. But I know that the smell itself makes me sick. However, I will be bringing up that maybe there is a medical marijuana spray, pill or patch that I can try. I am also wondering if we can get a prescription to get neurofeedback so it can be potentially covered by health insurance. The only place locally that does it costs about $4,000. I am sure there are more ideas, suggestions too that I can can possibly do. I will not give in or give up! But I am hoping that the next week or two does not have crazy changing weather or winds!

Here’s to looking forward to 40 needles!


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Building Yourself Up

Okay I admittedly ran myself down and it has taken awhile to be at 50% function. The erratic spring weather changes, Chinook winds and lack of sleep have not helped in speeding up my recovery. On Easter weekend a blister formed on the inside of my mouth behind my top six teeth. I really didn’t think much about it as my flares for SJS (stevens-Johnson syndrome) had eased and my hair had even started to stop falling out.

PassTheRibbonTwo weeks ago, a Facebook friend, SJS survivor, and SJS advocate, Julie McCawley developed a very bad flare. I think that Julie’s mom started Stevens Johnson Syndrome Foundation in 1996. In 1994 at ten months of age, Julie McCawley was diagnosed with SJS and has been fighting this battle ever since. I looked at images of her flare and felt her pain. Her flares are much more drastic than mine. But she is a strong woman that inspires many people who are also facing SJS.

Two days ago, my lips felt like they were burning and peeling even though I was putting on lip balm and drinking lots of water. Yesterday, my hair started to fall out again and sensitive skin behind my neck. Later that day I find a couple little round blisters. They are small with red and purple in the middle and my sensitive skin is itchy. Great time for the Benadryl. I guess with being run down, my immune system took a hit and I am lucky to have a little flare.

I guess I could have predicted it coming. I was feeling run down, fatigued, headachey and in a bit of pain. When I feel like that I don’t necessarily take my vitamins, eat right or feel like taking care of my self. I know that is when you should be taking care of yourself the most, but I don’t always have the energy to when I feel like crap.

So my goal this week is to build myself up – start taking my vitamins, rest lots, exercise a bit, eat healthy. I will try to take it once step at a time. Hopefully I will be back up and running shortly. I have lots to do! When you are feeling down or out of sorts, what do you do to build yourself up? Any suggestions will be helpful. Maybe I am missing something in my diet. I know that exercise for me is a bone of contention. I want to do some but then end up toasted. I definitely need help there as I am becoming a chunky monkey like my dog. I am becoming limited on wardrobe choices.


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I Survived Spring Break


On Easter Sunday, my friend, her two children, me and my two kids took off to Cypress Hills Resort at Cypress Hills Interprovincial park Saskatchewan side. We rented a three bedroom cabin for approximately $130/night. But even better was the buy two nights and get the third free.  Sweet! great trip for us budget minded moms. First off, it was the longest I had driven and I was a little nervous. It was not only the nap before leaving; coffee and sugar that made the ride smooth, but also the road conditions. In Medicine Hat we woke up to to an inch or two of snow, but in the Hills there was a record snow fall of 1.5 feet of snow.

Before leaving, I quickly packed winter gear and sleds. Yup I am writing about my journey with a brain injury and all my photos show sledding without helmets. Let’s just say that the brain injury got in the way and I forgot some important stuff. No way was I going to get beat up by four kids so they went sledding on our third and fourth days there. There first two were very chilly but fun. The snow was super soft, melting quickly and we were the only people there sledding.

It was a great time, we played card games, charades, drew, read, and the kids played minecraft on their tablets. Us mommies on mommy time drank copious amounts of wine. Yes I have a brain injury, but I am allowed to splurge on negative brain influencing behaviours. I re-discovered white wine. It has been forever since I drank white wine.

We went on lots of walks as a group. The kids played outside without us. I had my two hour nap every day! We had a great time, but on our fourth day, I thought I packed up all my stuff in the vehicle, I forgot food in the fridge and cupboard. Oops! Then instead of driving home right away, I went on the hunt for moose to take pictures. Got a couple shots of deer but that moose always evades me until summer.

The drive home was bad. It took everything I got to keep my attention on the road. I was exhausted but knew that Chris was at home off work for the next six days so I would be able to rest up and recover. However, I was wrong about the recovery time. Chris’ mom was having urgent health issues that required him to fly to Newfoundland right away. So he left Thursday. The boys had a sleep over on Thursday night; Friday I took the boys to the skatepark. Saturday & Sunday I really do not remember much except Chris was back Sunday night exhausted 13,000km in a few days was a lot. Monday I don’t remember much. Tuesday, I went to my son’s grade three class and did a presentation on photography composition. Then they all got to go around and take photos with their Ipads. I hit the wall after that. My right side was all tingly, numb with imaginary fire ants marching everywhere. My right eye and perception started acting funny. My usual head pressure/pain intensified with the feeling of a kitchen butcher knife at my surgery site and an ice pick through my right eye. The pain is intense that you no longer feel it but just feel sick to your stomach.

It is now Thursday and I am feeling a tad better, but not really. I have been getting up in the morning getting kids to school then going back to bed. I have been using my oils, but nothing else. I need to start up my vitamins again. I just got out of bed at 1:15 feeling like I should write, but now I am going to crawl back to bed for one more hour.

I would not give up my spring break for anything. I had fun. I pushed my TBI boundaries and Yes I will be most likely paying the price for the next week; I am glad I did.


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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.