Tuesday, November 19, 2013

Update on new DBS programming-side affects,life in general

Its been a little while since I last wrote. Partially because I been dealing with some things that not only had me concerned yet scared because I had no idea why they were happening and I can not stop them.

In September it had been close to a year since brain surgery #4. The re implantation of the pacemaker and lead wires to my brain. I had normal side affects or what most would think is par for course. Like my scar in my chest being very sensitive. Its about 4-5 inches long and thick. Since its itchy alot the surgeon said for me to rub it and it will desensitize it. He was right over time it has been less bothersome. Always itchy but less painful. The hole where they drilled in my forehead has never bothered me and just looks like a goose egg, and will always be there. The lead wires that come out of my head at the right backside of my head hurt alot. Very discomforting even laying on a pillow. I have trained myself to sleep on my left side. I also have movement of my pacemaker when sleeping and can be bothersome but tolerable. You just kinda learn to live with it.

Some other side affects that the surgeon and I keep re hashing is my weight gain. I have nearly added 100lbs since all of this happened. Yes I did quit smoking. I have a horrible snaking diet but my portions of meals are the same as my wife. I stopped exercising because for two reasons. I am exhausted all the time which could be a side affect or trade off for less attacks and I get an attack within minutes of working out. Excursion is a key factor bringing on my attacks.

We discussed my fatigue being the trade off for less attacks. I said I am OK with that. Funny, my whole working career I could work 12 hours and then be in the garage until midnight or later and be at work at 7 am next day and not be tired. My whole life I had a firecracker under my butt. I am the least laziest person you will ever meet. I feel even on my down days if I don't do anything I feel bad inside because I either feel a day was wasted or I didn't accomplish anything. My wife on the other hand sleeping is a hobby...lol. Its OK she works very hard and deserves her down time to re cooperate and recharge, where as me on the other hand I sleep very little and now have a very hard time staying asleep. I fall asleep a OK but staying asleep is another. Slightest sound wakes me up. I never used to be like this prior to surgery. I don't mind because I tell my wife all the time...Ill sleep when I am dead.

So back to September...I went to the dentist for some routine work. Cavities, cleaning and such. Now I had been to the dentist in between my surgeries so this wasn't nothing new. Within a few minutes and the drill going. I started to welt up and tears were coming. It was painful and as I laid there having had brain surgery awake I thought to myself. "Holy Shit, haven't I been through enough?" so the dentist saw my tears,stopped and asked if i was OK. Being strong like bull and dumb like ox I said yeah I'm fine and tried to suck it up. Well an hour into it something happened to me and even to this day I don't know why. I had him stop. The room was spinning on me like a ride at the fair where the floor drops out and your stuck to the wall. My eyes were rolling back in my head and the fear of passing out and or vomiting was happening. I tried to sit up and it only made it worse. I wanted to peel my skin off. I felt like I was trapped. I wanted to move but if I did I felt worse and the room was spinning. Having no control of my own body it scared the living hell out of me. The dentist said it was OK and understood because of surgeries and disease. This was not going away. They called me an ambulance. 20 min went by and felt like hours. Paramedics arrived. and by this time I was dry heaving. I so badly wanted to vomit or just pass out so I could get it over with. Never in my life had I experienced this whatsoever. I had the dentist call my wife, get our son from school and come get the car and meet me at the hospital. The paramedic in the ambulance was in total disbelief. You have what in your chest wired to your brain? I swear he thought I was telling him BS but I showed him my arm of my tattoo and the medic alert symbol tattooed on my arm with the words 'Deep Brain Stimulation". he said ill be honest. I never heard of  anyone having that for Cluster Headaches.  Off to ER I went.At this point it had dissipated a little but I was still very light headed and scared. The ER doctor came, they did an ECG, checked my blood and did some tests. My wife and son arrived and rather quickly too. I needed them there. I didn't know what was happening to me or why. I have lived through 4 brain surgeries, I have suicide headaches I thought I am a tough guy I can handle anything now but this was different and is really hard to explain.  The ER doctor came back and summed it up as PTSD. While I may have heard the term I didn't really understand it.

For the following week I was having dizzy light headed spells a few times a day. So I called my surgeons office and they got me an appointment to see  psychiatrist. The appointment was for March, months away. But the issue is my teeth hurt every time I eat, and the dentist needs to finish the work he started. But I am no here near ready to have this happen again. So I need help NOW. As the months have past my dizzy spells have gone from 2-4 a day to once a day now to every other day and they last a few seconds, Some worse. Usually happens when I am sitting down doing nothing.

Since I need to see a dentist they go me in a rush priority to see a doctor. I went and seen him last week. Within 2 weeks i will be seen again and start or plan to start to have Behavioural Cognitive Therapy. Which is great because I hate drugs and last thing I want is to be a funnel for pharmaceuticals. My wife attended the meeting with me, man I am on lucky man. I am so grateful for her and she is always by myside.

So yesterday I go see my neurosurgeon as e discussed the side affects and what happened at the dentist he concurs and thinks therapy will help. As usual I tell him some jokes and show him that I sat down and did some math on my attack history. Since I log all my headaches I also logged all the light headed spells I been having. He said to me I focus on the negative to much. I was upset because I don't think I am negative. but that is the harsh reality I am sick. The reality I have this and the harsh reality why I am fucking tired. His first words were hey how ya doing...you look really tired. So I shown him my sheet of the math and explain...hey this is why I am tired.

I been sick 8 yrs 116 days @ min 3 attacks per day & min 1.5 hr per attack=9108 attacks, 13,362 hrs of cluster headache,amounts of attacks on low scale. To be honest the first 5 years I had anywhere form 5-13 attacks a day. Now I average 1-3 a day.Some attacks 3 hours, some 45 min. most are 1.5 hours each. This where I got my figures from. I dated my attacks up to this past Sunday. So excuse me for having 13,362 hours of attacks ad being a little moody. Sheesh. No, not negative. Facts. And these figures are very low. But in all honesty I felt a low scale number was more factual.

So we chalked up alot to side affects. he played with the programming to help alleviate some of my food hunger craving. he also looked at my beginning of my headache report sheet from when I first started seeing him a couple years or more ago and said yeah your right your doing better. He programmed me adding something to hopefully help with the weight since the hypathalmulous deals with hunger as well. He increased the voltage now to 2.9 volts firing at my brain.

I am having less attacks yes. I am having less frequent severe attacks yes. Alot of factors could come into play. Not working, no immanent threat of stress at home. Rid myself of negativity and try to remain and live positive by blogging, emailing people globally, doing the right next thing. Living for my family, and raising my son and 2 dogs one of which is a rescue who we brought back to life.

These factors account for me having less attacks. The trade off has been 4 brain surgeries, being fatigued and exhausted all the time. Weight gain,lack of sleep(which could all be correlated). Mile case of PTSD, and some discomfort. id say a 10% and maybe more improvement. Some would think holy crap you had all that for 10%. Ask any Cluster Headache patient world wide and you would get a unanimous answer that 1% improvement is LOTS to us. So I am happy with the results. Will it get better. I hope so.Will I work again. No. Let me explain...If I cut the lawn, make dinner. I feel like I just worked 40 hours in a factory, and completely wiped out. Doing simple house hold chores like making dinner,laundry throughout the week fatigues me.I do not nap. Never have and probably never will. My mind is always going. Is this the trade off in life for me? Having less attacks but being extremely tired and wiped out all the time? Ill take it.Gladly. The only shitty part of this trade off is that when I do get attacks and since my body goes into fight mode...I am truly wiped out mentally and physically after a mild attack. I no longer have the fight in me anymore.I no longer have the strength to continue on or if I had plans, and attack comes, MY plans are squashed. Because now I have to do nothing and just sit/lay there wiped out. It sucks ass big time. To me its a better trade off. Like being over weight after quitting smoking over 2.4 years ago. Id rather be over wight than a smoker.

Some Cluster Heads may read this blog and think no frigging way I would have DBS because of what he went through. or think wtf didn't you do shrooms instead or just suffer. As I have explained in other blogs below(Drugs My choice), it ultimately will always be up to me what to do with my body as it is up to you to do with what you want. There is no cookie cutter carbon copy cluster head out there. I am an extreme case of being chronic, and having migraines and tension headaches as well and having no response to any treatment before hand. In Canada and Ontario where i life they just don't hand this surgery out and I went though a great ordeal to get here.

Yesterday was my wife and I's anniversary. 2 years. I count my blessings each day. It takes a very strong woman to marry a man who was already sick, going into brain surgery and knowing full well she would be the bread winner and supporter of her sick husband despite the countless nights I wake her up screaming. If you do not believe in angels you should because she is one. I am one lucky guy and the fact she is gorgeous is just icing on the cake.

My son also turned 15 last week,  I am forever proud of that boy. He is finding his way and having his own identity. In 15 years I have never once had trouble with him. He has gone though so much in his life. My disease, his disease, my surgeries, his cousin being brutally murdered,loosing his grandfather. And he always smiles, tell jokes, is a car guy like me and chased by the girls. I couldn't ask for a better son.

Last November 13 was the 1 year anniversary to my last brain surgery, The 4th one. No more. I am done with surgeries unless its to replace my pacemaker because the battery is worn out. I am NOT looking forward to that day.

To anyone going though it, been through it or going to go through it...your not alone. Be positive, think outside the box. Its a OK to take a day to yourself. Having a shitty day and its OK to think wtf is this happening to me. Know that tomorrow is a new day and life is a gift.


1 comment:

  1. Happy Anniversary to both of you. Fatigue has been something I've struggled with since I had a NeuroStimulator put in my side. I wonder if the fatigue is related to the "rejection" of the foreign object in our bodies. I know they told me the battery pack is itchy for that reason. I was told I've developed Fibromyalgia since the 9 surgeries I've had...not for CH...I have a bunch of stuff on PTSD & I'm currently taking a pacing course as part of some research. Maybe we could get together & talk about it...or if you're too tired we can talk on the phone. Your beautiful wife can give you my home number. There are days where I'm lucky if I get 4 good hours. I also understand the absolute frustration with being so exhausted and not being able to stay asleep. God Bless you Tom & hang in there you are always in our prayers.