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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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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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!