Howdy Hydrocephalus

Understanding my unique gyroscope


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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Neurology Exam

Wednesday I have another appointment at the Brain Injury clinic. We will decide then if my Stevens-Johnson Syndrome (SJS) has settled down enough to have my next round of Botox shots and start some other pain/headache meds. If the Physiatrist (Rehabilitation Specialist) does not think it is wise to do the shots or try any meds then we come up with a new appointment time and do the wait & see thing again like last time.

I have been coping pretty good with the pain. I am getting tired, and hate the fact that when I stop to rest that the pain feels so yucky that I push myself to keep going. I go until I burn out. Then because I am burnt out and my immune system is poochy I get a damn SJS flare and then the flare does the irritate bright red, slight blister, slough and burn physically. I had one that affect my face and mouth around thanksgiving. Then it started to affect other parts of my internal organs this week. Grrrrr! So I am told to be patient that it is in the early stages of recovery. I have heard that one before….my TBI (traumatic brain injury). I need to breathe…breathe…think distracting thoughts and breathe in pleasantly distracting smells.

I found this pic online and had to just share. It made me laugh.

Because Foothills is a learning hospital, I often get the full meal deal Neuroexam. That includes both physical and cognitive testing by the interns or other doctors in training. Neurology exam made simple is a great site to see the videos for the physical testing. They often make me walk in straight line and keep my eyes closed and see me weave forwards & backwards too.

I practice at home the physical so I can be better each time. I practice from my nose to imaginary other fingers so I can be quicker like this

20141020-184830-67710345.jpg I must look pretty funny if someone saw me doing this in my bedroom. At least it always make me laugh. I am working out my muscle memory to coordinate my right hand and response time. I know that it will do it, but the lag time is what kills me. I think that the Docs think I am a good patient for students to learn on as I am as stubborn as a mule and don’t like to give up.

Here’s to getting myself all psyched up for what is like an Commenwealth Games event for the brain injured. The Olympic Gold medal event is what I would consider the Neuropsych testing that takes at least four hours to do. You just gotta know that I have to win that darn first place medal during the exam. I always hope that I will miraculously not show any signs of anything wrong with the brain. I can always hope for the Hail Mary and take whatever small gains as a win.

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Big Steps

The other day I remembered that I should write in my blog. For some reason my reminders have not been showing up. I was inspired and my fingers flew freely, faster than if I concentrated and had to speak. I was super happy with what I written and then of course…I hit the wrong button and all that disappeared in front of me. I was not upset, I know that whatever came through my fingers was gone and I would write something else.

I finished my testing at BIRS (Brain Injury Re-learning Service) and have been working on improving my squirrelly lack of attention. I have two one hour sessions a week. Most the time I don’t even make it an hour because I am tired and my brain is fried. We are using technqiues from the 80’s…i am assuming their philosophy is if “it ain’t broke don’t fix it”.

I am not giving up on the brain schooling here in the Hat, but I am a little skeptical as I think there are other ways. I still do not like the fact that there is no support group for me or my family. I dislike that they do not have other activities such as social art, fitness etc that other brain agencies have. I looked online and the Powell River society has all that and it is a very small community. I wish they would get with the program and get us brain injured people together rather than isolating us. It is bad enough that i would rather stay in my house all the time unless i have my appointments that wouldn’t provide basic stuff such as a support group. What am I to do go on Twitter or Facebook and say “Med hat brain injured person looking for friends in similar boat”??!!! Okay I actually did that on twitter and was given two names of people and I was in contact with one lady but of course I lost all her information because I have a brain injury and I am beyond disorganized and chaotic.

On another note, chronic pain is a pain in the butt. I never realized how bad my 24/7 headache pain was until it went away. About three weeks after my shots I woke up with energy and no head pain. It was like I could think (manic thinking because I “now could do everything at once”) and I felt that my head was not a lead balloon and weighed 50lbs lighter, I was almost human; more than human a super hero; nothing could stop me now So the Botox was working like a hot damn. How did I know that my new operating system was working at a low pain level was that an hour later I was knocked flat by a migraine combo ice pick headache – wowsers talk about a shock to my new system. I had adapted to my constant pain by breathing, distraction and limited life activites.

I never gave up to finding a solution to my pain. Now don’t get me wrong, I am still not fully out of pain. I frequent headaches, but they are doable. My right side pain is still there too, but the meds are sort of working. I am hoping to change in July to something else that will work with pain, fatigue and other side effects that I do not like. I just wish other people with chronic pain would keep fighting for solutions rather than giving up and making do. Making do just sucks!

I am so amazed at my recovery since September. The speech twice a week; volunteering with kindergarten reading group 30 minutes once a week; volunteering at school when I could with field trips etc… has paid off. I was able to use my speech techniques frequently that I have muscle memoried them in to my body again so my stutter doesn’t show its head until I am very tired or there is way too much stimulation around me. I am able to communicate better. Still don’t really know what to say to people beyond the basic conversation unless around really close friends. I am friendly to people; but still learning the cues to know when to finish a conversation etc…

I am learning to accept that I need lists to make things happen. here is an old list from October 2012. This is now in my crainum and the muscle memory recovery process is almost there. I still have to go through it my head at times. However, I may need the checklist again in September until a new routine has been established again.


Heres to lesser pain days routine filled days.

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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)