Howdy Hydrocephalus

Understanding my unique gyroscope


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One Size Does Not Fit ALL!

It has been a while since I wrote. After the botched Botox and uncooperative Nurse, I had an appointment with my Dr. From the brain injury clinic at Foothills. I asked if I could she could send the migraine protocols that she used on me over to the nurse who did my Botox. I explained that she put needles in my jaw for TMG and in my cheek below my eye. I also said that they didn’t use as many needles and I was in extreme pain so I took desperate measures to get Daith piercings done.

She told me she could not control how the clinic did their Botox for migraines and said I should come back to the clinic in Calgary. I agreed.  

Yesterday I had my appointment with her. I told her I went to see a local MH neuro who basically was shocked that I was not 60 or 70 because I was too young to have Hydrocephalus. Then he asked me to explain how I got hydcrocephalus as he was looking into my eyes, and doing my reflexes. He then interrupted me and told me he really didn’t want to know, but he was just distracting me so he could do a quick assessment. Then He asked me why I was seeing him, I said I didn’t know. He said that Dr??? Sent the referral. I said I didn’t know who that Doctor was and then he said my GP’s name. (SIDENOTE: Oh it was from January when my head was in extreme pain and my Hydrocephalus was acting up due to the sinus thing. I wasn’t the most happiest patient at that meeting. If only the Dr. Said to me at the time that no worries your symptoms get extremely worse when you have a sinus problem instead of saying no nothing was wrong with me just a sinus issue. ) The MH neuro then said that he could not treat me for pain, but another local neuro may be able to. He then asked if I had seen a psychiatrist. I said in hospital, I had neuropsych tests done twice. He said “that is psychology” and brushed it off and said to me that he is referring me to a psychiatrist because I look anxious. I told him I was anxious because he was a new doctor that I had not seen before. Meanwhile, I felt not listened to, pushed off and the typical MH dr. Response of I am not going to treat you because you are not an easy cookie cutter type of condition. So then I asked him…what he specialized as a neuro in MH? He replied that he had no specialty because MH did have any. So then I questioned what did he do as neuro then. Well he was not to impressed and really just gave me a brush off type of answer.

My Dr. In at the brain injury clinic said stop going to these appointments. I told her that I didn’t know who set it up. I thought it was apart of me trying to find local Dr. To take over my case management and begin to treat me. I told her I didn’t realize it was from that Dr. I saw in January. I told her that yes I was upset, but I was scared and in pain due to not only the sinus thing, but also being off the Pristiq for nerve pain (but didn’t  know that at the time) so that the Dr. Basically set this up so I could see a Psychiatrist and get my crazy all taken care of. She told me that I did see a Psychiatrist at Foothills more than once with the testing and they didn’t find anything crazy other than being anxious and slightly depressed at the time.  She then shook her head and said that having Too many cooks in the pot just mess you up so now I will continue to see her ever three months. She will make sure I am on the right meds and get me the help I need. I am so blessed and grateful to be under her care full time again. She has been the best Doctor I have seen since this whole journey began. 

It is so true having that one Dr. Who cares about what he or she does and cares about their patients makes a world of difference. It is the Doctor who wants their patients to become as good as they can and not just say well you hit the two year mark…this is a as far as you go. It is the Doctors who DO NOT provide alternatives, different approaches, resources, empathy, caring and only see patients as a ten minute time slot that keep the TBI suicide rate so high.  TBI is like any other chronic illness, it is lifelong, uncertain, often filled with confusion, isolation, limitations in mobility, sleep, cognitive, executive functions and a wide array of other physical, emotional and financial challenges. Pain and fatigue are the rulers of your day. Pain and fatigue can make you bed ridden for a few hours, to a few weeks. This can affect your mental well being because of continually letting friends, family and work down.
The downside of these caring and compassionate and driven Doctors are that they are far and few between. That because they are empaths, you can see the burnout in their eyes and their actions. My Doctor has shown these signs for the last year.  You can see it in her eyes, how’s she holds herself and the lines etched in her face. I only hope that there are resources available for her so she does not leave this career where she is amazing!!!!!!!!! Or that she decides to put herself on autopilot and not care just so she can survive the long grind until retirement. 

How can I help her? We usually bring a gift card or some sort of treat for her but I forgot yesterday.  Any suggestions? Has anyone else experienced such a great Doctor but see how the corporate pressures of trying to get patients treated in their local communities is hurting him or her.

Please let me know. I think we all should try to rally around the good Doctors who take their profession to heart and string up those shitty cookie cutter doctors who really cause more problems than solutions. How can we make the Canadian Medical system better rather than see it become worse and worse.


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Chronic Pain & TBI

Chronic Pain is a beast. It is not pain from over doing it at the gym, lifting heavy objects or mountain biking, it is pain that does not respond to over the counter medicines and it is often brushed aside by stating that the pain is “psychological”. And when the pain doesn’t go away or get treated, your life can begin to unravel quite quickly. Sleep, cognitive, concentration, appetite, daily activities are negatively affected when chronic pain is not treated or under control. This then leads to anxiety and depression that only add the nasty mix and do not help in day to day living. Because your energy is now taken up by doing everything in your power to accept and move through the pain. You breathe, continue with limited activities, say affirmations, think positive, try herbal supplements and anything and everything that people suggest to try to find some relief. Until it all becomes too much and then you sink into that pit of despair because all the tools in your tool box no longer work. You question worth, value and place here on earth. You can not handle the feel of clothes on your skin, or even someone touching your. Your body is so inflamed that you are old beyond your years. You do not go out because any activity is no longer easy or fun. Joy and happiness are suck from your soul as you are bone weary with every move. You calculate how many years left and if you have the mental and physical strength to actually continue to be here in this pain every day until die. You start to think of ways out…anything to just get rid of this damn pain.  This cycle will repeat itself until….

You finally find a Doctor who understands that chronic pain is real and begins to treat the pain. There is not a text book type way to treat chronic pain. It is more like experimenting with different treatment options until a positive response is obtained. This approach takes time, patience and sometimes putting up with a lot of side effects from different medicines. 

My chronic pain is two-fold; the 24 hour a day migraine with the added bonus of cluster-like headaches that feel like ice picks through the eye. This pain is never gone but for the most part it is managed. The second part to my chronic pain is my neuropathic pain due to nerve injury or nerve mis-communication and response to pain. This has always been on the right side of my body. It feels like burning fire ants, burning and shooting pain that is continually there. Between my knee and ankle fluctuates from burning to feeling like wood. I have had this for five years and it will always be a part of my life.

However, last November, I went off my Pristiq because I told the Doctor that I was doing well and that I was not depressed so I didn’t need it. So I went off the meds.  Then comes January to March where I begin to lose it all. My Neurogenic pain is not just on my right side, it was on my left side too. My chest felt like it was on fire with the flames flickering upwards to my neck and nose. I was worried. My skin was horrible. The itchyness I had on my arm, chest, legs and back was so bad that I was looking like a meth head with open cuts.

Turns out that my Pristiq was not for depression but for my neurogenic pain. An off label use for it…oh didn’t know that. Thus my brain doctor will continue to see me because she just rocks at figuring out what the hell is wrong with me when no one else gives a shit. Also she prescribed this awesome cream that does not contain steroids but instead lanocain and gabapentin to help topically for my pain. Also endless itching is also from neurogenic pain. The nerves are just all messed up and sending weird signals.

So now my pain is not through the roof. It is not 100% managed yet…still annoying as hell. I really do not like the way my chest feels but I really have no choice but to accept it. I hope we can still find a better management solution. I am looking forward to my June appointment to see what my next trials will be.


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Back on the writing bandwagon!

images-8It has been an really long time since I have written. I have not fallen off the planet, but have been challenging myself even further. Even though I love to write, there are many other things I have been focussing on such as creating art, graphics, starting a small very part time graphic design and creative life coaching business. I am unable to fit them all into my life at the moment. One day soon I will be able too! It is a goal I am working on.

My life has been changed since September to end of December. I had amazing energy, concentration and steps to move forward. I was able to attend  two craft shows and make for me a lot of goods. Christmas and the New Year were a success. I got everything done for the family, rested & played too! But then January 1st, I woke up with the worst cold ever. From January to now has been an interesting month. I have learned some takeaways about Hydrocephalus that I did not know before. Because of my new knowledge, I have finally decided to work with the Hydro instead of fight it in this case. Fighting it will only make it worse.

So What did I learn? I learned that if there is a stressor on my body like a cold or a completely blocked sinus (with a mass that potentially they think means trip to Foothills again soon) can affect the baseline of your hydrocephalus. So what does this mean.

fb_img_1443293628775My MRI showed that I had amazing flow. I love that my Dr. Sits me down and we look at the images. I love that he explains what I am seeing. He said the grey area where my hole from bottom of 3rd ventricle show cloudy grey. He said that was turbidity. I said “that is to be expected. When flow of fluid has to go from big space down a narrow tube – it speeds up – basic physics…you know my background before all this was science!:”  I almost knocked myself off my chair when this came out of my mouth. I was shocked as shit that my brain just pulled off something that I thought was long gone.  Nope just in hibernation waiting for my neural re-connection.

Distracted Side note Inserted here:

The black hole of my brain injury released some new information. Lately I have been experiencing this more and more…snippets of old knowledge and experiences pop into my head.  I wlll write a blog post of what I can compare this to in hopes that it can help fellow TBIers but their experiences into words.

images-5So my new baseline was how awesome I was doing before feeling cruddy in January. This means that until my stressors on my body…the blocked sinus thingy will continue to put negative stress on my hydrocephalus until it gets addressed. So in the mean time I will experience and increase sleepiness, tripping, falling, dropping (or accidentally throwing items), weird walking stance, numbness, tingling, head pressure, pain, and cognitive decline. I have been having a hard time figuring processes, and steps to getting things done again. Decline in remembering what to do with Adobe Illustrator again. I have been saying the wrong words for things more and more. For example for the last month I have kept telling the boys to put their laundry in the dishwasher.  

images-2You know that gets old quickly when you have two parrots who are like okay and start to put their dirty laundry in the dishwasher. My kids are jokers I say…but when I am stressed mentally with the weird symptoms that have popped up in my life, my sense of humour is greatly diminished. Actually irritability, and anger have popped their dragon heads up again so much that the boys have noticed. They joke that driving with mom is like “beepidty boop boop beeep” with the added family finger.

kitty-fingerI have been reassured that symptoms, although scary will go away once the stressor is fixed.

Let’s hope this happens quick before my control and filter completely disappears and I actually tell off a stranger who is pissing me off.

 


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A crash course

kelly dec 2014 290 - CopyI am fortunate that the last couple months have been filled new long lost energy that I never thought I would ever get back. I have friends and family who I thought new about me and understood my condition but to only find out they they really didn’t understand all this time. I know that they keep hoping I get better. I will never “get better” it is not like a virus where you are back to you 100% old self. It is more about adaptation, flexibility and being creative in finding ways to live a productive life. And the definition of “productive life” is also not the old way of what you thought was a productive life either.

When you are faced with a long-term chronic condition (I won’t call it an illness as this confuses the shit out of people and they think you will get better) you are forced into a new way of life. One of your new found roles is a crash course in accounting. Even if you hate math with a passion, you are forced to learn the debit and credit system. You also are forced to learn to budget to have that little slush fund for that proverbial rainy day.

Sounds like a great deal. Learn a new profession, work with numbers etc…. However the downside of these new roles do not come with any fancy designation, nice salary or working with lots of money. Instead you are forced to work with a very highly sought after commodity; an elusive currency that has more ups and downs than the NY Stock Exchange – Energy!

Energy and pain are two things that unaffected people have a hard time understanding. They are often taken for granted and never thought of unless you are directly put in the situation of being in a continual energy deficit or in a perpetual state of pain wealth. I have tried to keep up but have crashed and burned. I am the worst accountant in training in my new chronic class. I am on the remedial programming as I still trying to live life by the seat of my pants rather than following the new accounting practices that I have been taught.

I have never even tried to explain how I have felt or feel to people. I couldn’t put it into words that would makes sense where I wouldn’t sound like a person that needs to be put in a rubber room or the new found trend of being “euthanized for mental anguish”.  I had heard of the Spoon Theory before but never really read anything about it until today. I love how it visually represents energy and planning in a tangible sense. Please check out But You Don’t Look Sick’s website as there is a great post on how the author explains how living with Lupus is like using the Spoon theory. I am inspired and grateful for learning something new that I can pass on to advocate for myself and for others.


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The battle between a clean deck and empty energy tank

IMG_3591This was my battle and I won. You would never think that a deck could be so sneaky and ninja like could you. But for a person such as myself recovering from a TBI/ABI with major fatigue issues a clean deck can be a nasty fight. First off, I actually “noticed” how grubby our back deck was. I wasn’t distracted by pain or other stuff that can “blind” me to seeing how the world is around me. Second, I moved all the furniture out of the way and then I cleaned the deck by mopping it. I also conquered the deck from start to finish in one go; not my usual family frustrating chain of events.

That does not sound like much to most normal energy people, but this is an amazing step for me. It turned out that the deck is not tan, but really grey. It looks so amazing except for the three steps I forgot to clean on the one side of the deck. Can’t expect perfection when progress has finally started to show up. Oh well – a person can compare colour differences more easily now. I am so over the moon with my new found energy! My progress is blowing me a way every day!

This how cleaning a deck looked like for me for the last three years. How in 33 short steps and a couple months you can have a clean deck when you experience TBI & fatigue issues

1) Jump in and start moving deck chairs

2) Realize that you have blocked yourself into a corner.

3) Move Deck chairs again.

4) Go upstairs and lie down. Head is spinning and no muscle strength

5) Get distracted with something else

6) Forget about half moved deck furniture

7) That day to two weeks later…finally remember that you were going to clean the deck

8) Move the rest of furniture.

9) Go upstairs and lie down. Head is spinning and no muscle strength

IMG_359210) Get distracted with something else

11) Forget about all the displaced deck furniture

12) That day to two weeks later…finally remember that you were going to clean the deck

13) Look for the mop & mop bucket. They moved with us..right!?!

14) Look for floor cleaning solution. We had a big bottle somewhere

15) Arrange all outside & then go upstairs to rest

16) Go upstairs and lie down. Head is spinning and no muscle strength

17) Get distracted with something else

18) Forget about the filled mop bucket with cleaning solution

19) That day to two weeks later…finally remember that you were going to clean the deck

20) Mop half the deck into a corner

21) Re-mop myself out of a corner

22) Go upstairs and lie down. Head is spinning and no muscle strength

23) Get distracted with something else

24) Forget about all the half mopped deck

25) That day to two weeks later…finally remember that you were going to clean the deck

26) Finish mopping deck and start to move back furniture

27) Re-mop deck as there are dirty streaks from moving back furniture

28) Go upstairs and lie down. Head is spinning and no muscle strength

29) Get distracted with something else

31) Forget about putting away mop

32) That day to two weeks later…finally you remember that the dirty mop & bucket is still outside

33) Look around and think…I need to relax out here more!


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Cautiously Optimistic Round Two

images (2)Monday May 11, 2015, finally got to go see my physiatrist at Foothills. We talked about my being in pain since April 5th. We then talked about the emotional roller coaster ride that went hand in hand with the pain. She also ordered a CT scan because of the weird auditory things and head pressure that has also been happening.

She gave me a new sleep prescription to use if needed.

We talked about different alternative therapies that may or may not work for me. I liked that we talked about her research in sports and concussions. We also talked about the placebo effect. How that 30% of any treatment, drug, therapy is placebo effect. So it is hard to determine which alternative therapies would work for me. Then hubby brought up the if using medical marijuana would be an option. Because my kids where in the room, the Doc asked if we smoked via symbols. We said no. She said there are three ways smoking with a vaporizer to get rid of toxins, using a nasal mist or by pill form.

The Doc thought that Cesamet (nabilone) would be a great adjunct treatment with the Botox treatment. Cesamet is a man-made form of cannabis (also known as marijuana).

f43231246f0fb14e63a92944ab735993So I had nothing to lose. From day three on I walked around with a perma grin not because I felt high, but because I felt very little pain.It still feels surreal to be the most pain free in over 3.5 years. The pain is not gone, but it is amazingly reduced! I still get the fire ants up and down my right side of body and face, but instead of pain, it is just like little marching ants feet. I get break through pain from weather systems, over stimulation and from my eyes, but it is nothing compared to what it was. My right eye still does it’s own thing and I can feel it twitch etc but there is no ice pick or butcher knife piercing through my eyeball.  I still get the aura symptoms of weird visual patterns and wonky vision, but I don’t get the full headache pain. We had a thunderstorm warning yesterday and a small storm today. My head felt like I was wearing a helmet, heavy and constricting. I could still feel the pressure, but not the pain so much. It is quite the feeling to be a human bobble head that may explode at any moment but without the physical shooting/throbbing ice pick pain.

chronic painI feel free and light! I do not feel high. I feel very awake and alive. It is so amazing to have some of my life back. The world is not fuzzy or blurry (still can be tho) but way more in focus. The huge heavy backpack, chains, rocks of pain have been decreased to a manageable level. I had no idea how much I used the power of positive thinking, mindfulness and relaxation breathing to help with my pain. I know that I would always minimize the pain because why would you bother telling people about it too much. I mean the story gets old for me, so sure in the  hell it has gotten old for others too. I have some side effects, such as it has slowed down my digestive and motility to a near stop. This does not make you feel comfortable so I am taking steps to get it under control. I did feel a bit nauseous but hell I was feeling sick to my stomach 24/7 for the longest time so no biggie and that even went away after about ten days of treatment. The pill hasn’t cured my brain injury, but it has brought some relief to pain so I can hopefully now work on my brain quirks. My memory and awareness still needs to improve. I was towing my hubby and son behind in a dune buggy and didn’t realize until I got back to the truck that the rope had snapped and left them in the dust over a few hills back! I posted this today and somehow, it showed up for a bit then reverted back to a draft that I thought I had erased. I have no idea what button I pushed, but what was showing this evening was not what I had posted this morning. Boo Hiss…disappeared to me hitting wrong button when i tried to correct a date. I also put last years date. I honestly still thought it was 2014. OMG it is almost half way through 2015.

kelly dec 2014 359 - CopyHowever despite how squirrelly I am acting, I feel like I want to take flight and just grab life again and be a part of it. But all my family and doctors all want me to take it easy. My hubby wants me to be at least six months pain-free before I decide to do “something” That “something” I am still working on and look forward to doing eventually. Here’s a big cheer for being cautiously optimistic round two


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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!