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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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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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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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