I have spent probably a total of 30 to 40 hours, in blocks
of 5 to 9 hours, trying to get my son's new phone to connect to our PC (never
did get it to work) and the other obsession of the week researching/gathering
information on rTMS in preparation of creating two items; 1)a form letter for people
to send the government to encourage the coverage of rTMS, and 2)a Facebook page dedicated to recruit support
to include rTMS under the Alberta Health Insurance Plan (and perhaps if the
message gets out there it could help other provinces and states), as well it
can perhaps help in educating people about rTMS.
Anyway, I feel like I wasted a lot of time, as I don't seem
to have anything to show for all of my dedication - We even missed supper one
night, I didn't realize what time it was until well after 10pm. I still haven't
spent any time thinking about how to format this weekly blog??? So I will be
lazy and just do it in a day by day format.
Just like I entered it into my handwritten journal... Boring I know...
Monday, September 24, 2012 - This the first day of my sons
rTMS treatments. However, I started the day very early to have my own rTMS
treatment, then came home had my breakfast, tea, and medications and waited to take
my son for his treatment (it was scheduled for 1pm). So we arrived on time, but
had to wait a bit - they were running a little behind. Finally they took my son
in. I asked if I could watch, but he said no so I sat in the waiting room
feeling a little angry/hurt/ and pouty. Shortly after they went in the
nurse/doc (let's call her Dr S) that gives me my treatments, came out and asked
if I wanted to come in. They talked my son into letting me come in and watch the
process of setting him up for the treatments. At this stage prior to
administering the treatment they must take all the measurements required to
find the proper location for the treatment to be delivered, once the
measurements are taken and the cap is mapped (you get to wear a lovely swim cap
that they draw lines and dots all over as their means of guiding the paddle),
they set to determining his threshold by stimulating a spot on his left
hemisphere, just back from the actual treatment spot (by stimulating this area
his thumb will twitch, the intensity of the twitch determines the strength of
the stimulation level - they are looking for a slight movement) the actual rTMS
treatment level will be the threshold stimulation level times 110%. This is all
stuff I have had done to me several times, but I have never been able to
observe. Thankfully Dr S and Dr N convinced my son to let me watch that part
since like I said I have never had the opportunity. It was very interesting to
see. With him measured and the threshold set (I believe his threshold was
around 50 something, mine is around 80 - mine has always been pretty high, I
think originally when I started about 2 years ago it was in the mid 60's) I
left the room so his treatments could begin. I was very excited that he had
this opportunity, and for whatever reason a little nervous (typical Dan). They
also told me that some studies show that the younger the person is, the quicker
and more dramatic the results, as their brains are presumably more malleable. (Here is hoping that is true.) After the
treatment all my son said was that it hurt like hell, and his face twitched all
the way from his eyebrow to his jaw during each train. I assured him that his
future treatments would be less painful and the twitching will vary (possibly
each time) based on the angle of the paddle. Even the slightest change in angle can be
enough to hit a facial nerve - it's nothing bad just annoying. We went home and
each headed off to do our own things, me upstairs him down stairs. He didn't
complain about the rTMS making him tired like it does me. I find it very
interesting how everyone's reaction is so different when it comes to
medication/treatments that affect the brain. Then I spent the rest of the afternoon
and evening trying to convince our PC and my son's new phone to connect to each
other. I literally spent 6 or 7 hours doing anything and everything under the
sun. I researched the problem on the internet, I did a chat with Samsung (the
manufacturer of the phone) online, and I also called and spoke with a
technician from Samsung directly, still nothing... When I finally realized what
time it was, we had even missed supper, I finally gave up and went to bed. We
decided we would try again tomorrow, and if it didn't work we would call
Samsung again.
Tuesday September 25, 2012 - My son's second rTMS treatment,
at 8 in the f%$king morning. UGH. I had to get up at 6:45am - those of you that
know me, or perhaps even those of you that don't but have been reading this
blog, know that I am far from a morning person. A fact that is not helped by
the little bit of sleep I get each night. The pdocs, and many other people, don't
seem to get the fact that because my sleep is so broken the longer I spend in
bed the more opportunity I have to get a little bit more sleep... Whether right
or wrong, it's all I got until someone figures out why I can't sleep. Anyway, exhausted
or not I ate my toast, had my tea and pills, then we headed off to the pdoc's
office. My son said the treatment went well, and was less painful but he still
had the facial twitching. Then I took him to school, and I headed to help my
friend. I should note that my son and I had a little tiff when I dropped him at
school. The deal has been that he would stay for the morning, attending both of
his classes, but this morning he was bound and determined to leave after one
class. I am like no way, he was like whatever. I was, in my mind, f$#@ this
shit, and headed off. My son sent me a text later around noon, when his classes
were done that he was still at school and would be running late, and that he
would text me when he was leaving. I was very excited that he had stayed the
whole morning. Maybe an hour or so later, he sent the text he was leaving, so I
left my friends house and met my son at the LRT station near my friend's home. When
I picked him up he explained that he was late, because he stayed to attend a
club (not sure what it is called - but it's a group of students that enjoy
playing music and they jam together). I was flabbergasted, in a good way. The
reason we met at the LRT station was that he wanted to go to Axe Music to get
an electrical adapter for the new guitar peddle he got for his birthday. (For some reason I got to buy the adapter. I
know lucky me... hmmm) Then we headed home, both of us exhausted. When I got
home I tried again to fix the connection between my son's phone and the PC. I
did this again for hours and hours. This time I realized we needed supper (but
it wasn't until 7pm when this happened). Time flies when you are focused on a
frustrating task, plus with the Dexedrine I really don't care if I eat or not -
plus I feel nauseous when I even think about food. Still we grabbed some McDonald's,
and I forced myself to eat a few fries and part of a chicken burger. After we
ate I washed some clothes, and towels. Following that exciting adventure I went
to bed, beyond exhausted. I think I fell asleep around 10:30 or 11pm, but sadly
woke up at 1:30am, wide awake. Wow 2 hours of sleep, it felt like hours had
passed since I had fallen asleep, but ya not so much. I still felt exhausted,
but not sleepy. So I popped my Zopiclone (I hadn't taken yet), and eventually I
passed out. Shortly after finally nodding off, I got to enjoy my usual cycle of
waking up, falling back asleep, waking up, over and over again - but when my
alarm went off at 6:45am, I was like WTF...
Wednesday September 26, 2012 - Another early start, as
mentioned the nasty disturbance of the alarm clock at 6:45am - I then got to
yell at my son to get up - then I showered - got to yell at my son to get up -
ate my breakfast - got to yell at my son to get up (by yell I mean text J).
Then with both of us finally ready, we headed off for his third rTMS treatment.
We were a couple of minutes late, thanks to someone not getting up when they
should have, but the rTMS folks were fine. They asked how my son was doing, and
he actually said he was starting to feel a little bit of a change. We also
chatted with Dr N and Dr S about the story we saw on the news last night. The
story that was on all the local media was an announcement from the Alberta
Children's Hospital about a new study they were starting on the effects of rTMS
on depression in adolescence (12 and 21 years old). When I watched it I was
like, why the f&*$ didn't you people announce this last week? Had they done
that perhaps my son could have enrolled in the study, and saved us a crap load
of money. However, there are a couple of things that would concern me about him
receiving it through the study; I have no idea what protocol they are following
- which I know from experience is crucial (meaning both frequency, and duration
of pulses and the number of trains), as well what protocol will they follow for
the number of treatments (will they be using the standard 20 to 30 days in a
row, at 5 days per week for the initial treatment). Another issue would be
whether not this was a placebo-controlled study, with the possibility of my son
getting a sham treatment. Not only would
that be a waste of our time, but more seriously it would be putting my son's
life in danger by waiting. So even though Dr N went out of his way and called
my son's pdoc directly to let her know about the study, and asked her if she
would prefer to try getting my son into the study; we (my son and I) decided it
would be better to stick with what we know.
After all I have trained these people, plus I guess the fact that they garnered
such a great education from their Harvard studies, whatever J. Success and the ability to get my son out of
danger are far more important than the money. I handed over the cheque for my
son's treatment, without any bad feelings. They nicely let me pay by cheque, it's
not their normal practise - generally only debit or credit card (neither of
which I have the limit to use for this purchase - I never asked about cash J).
When the treatment was finished, I took my son to school, and headed to my
friend's house. She sadly stayed in bed till I almost had to leave, so I had to
find something to do... I decided to do a comparison of the Petroleum Land
Administration courses/programs offered by SAIT, University of Calgary, and
Mount Royal University. Through this
comparison, and the table of information I created, including course description,
duration, and cost, I was able to determine that SAIT would be my number one
choice. Although it was more expensive then my second choice, all of SAIT's
courses can be done online, as well once completed you receive a certificate,
and there are only 6 courses which is fewer than the other institutions
(therefore quicker results). They also make things easier by including
everything within the price, no hunting for text books. The second choice Mount
Royal University is the cheapest, but all of the courses are in the evening.
This part time structure would drag out the completion of the program to over a
year. There are also 4 prerequisite courses, plus 5 core courses required to
complete the program. It also appears there is no designation once you complete
the program. The third choice (not really a choice at all) is the University of
Calgary. It would be the most expensive (although I could not get a definitive
price), but since it is actually a Bachelor of Commerce Degree with a
concentration in Petroleum Land Management, a four year program, it would obviously
come with the price tag to match. No thanks. Not looking to spend four years in
school for this. I just want a little knowledge about the Oil and Gas business
to better help my friend. Then I met my son at home - he was playing his drums
when I arrived. He seems to be doing better, not sure if it's the rTMS or some
success from the Vyvance. I guess it could be a combination. He stole my
computer shortly after my arrival, so I had an early night. I have been feeling
so crappy - between the lack of sleep and the Dexedrine hangover at the end of each
day that I went to bed just after 9pm. I realized I hadn't spoken to my mom yet
that day, so I gave her a quick call. After our conversation I decided to watch
some stuff on my iPad, and although I was so exhausted and I had taken my usual
sleeping pill regimen - I didn't fall asleep until well after midnight. F$#%.
Thursday September 27, 2012 - We started the day off like we
have every day this week - except today we got to sleep an extra half hour, his
appointment wasn't until 8:30am. This day my pdoc (Dr M) was the one giving my
son his rTMS treatment. Dr M must have done an OK job, as my son didn't have
any complaints. I then took my son to school, and headed off to my friend's
house. Again my friend wasn't available right away (she was still in bed - she
is worse than a teenager J),
so I decided to Google one of her companies to see what kind of info was out
there. Almost all of the sites/listings were either completely wrong, or at
least contained some wrong information (mostly the mailing address). So I made
a list, including links and documented all of the errors. I am not sure when we
will start the process of correcting everything, as she is in the starting
process of having a new website built - I would rather have that link, when I
contact people to update their sites. I found, what looks like a great, local
company to create and build her site. She has had some bad luck with small companies
and individuals, so I suggested the use of a company that has demonstrated
successful results. Not sure how long this process will be, but hopefully not
too slow. I left there, and picked my
son up from the LRT station that is 'deemed' the closest one to our house. We
headed to get our prescriptions, and get some food... ugh food. Still not
eating much, thank you Dexedrine - still losing weight, which is awesome- but
the feeling nauseous often is starting to suck - still I will take the losing
weight and the help it provides in making my IBS better, even with the all the
bad things it does. Again, I barely ate anything. I think the waitress thought
I didn't like the food. So I got a doggy bag, we headed to get the drugs and then
home. Man every night coming down/hangover from Dexedrine is a horrible
experience. Like I mentioned above I start to feel nauseous, dry mouth, and
then my throat feels like it's closing up (which freaks me out), and then my
chest starts to hurt - which freaks me out more and a think I am going to die.
Then sometimes I will get this ache and numbness in my arm (usually my left),
which sends me over the edge of freaking out thinking I am having a heart
attack - which is obviously stupid, cause I am still here and this has happened
many times now, pretty much daily - in any case the panic continues. I start to
find it hard to breath, which leads to more anxiety that makes me start to get
hot (like a fever), and sweating at a terrible rate. So there I am dying of a heart
attack, and all I want to do is go to bed take meds and pass out. Some people (not
mentioning any names) get upset with me when I don't want to talk, or sing in
the car, or what have you, but I feel like shit when all this is happening. Sometimes
these obvious panic attacks happen when I am out in public, at events, or even
just at the store. I am not sure if they are being exacerbated by the
Dexedrine, or just my usual shit. Either way like I said when it's happening, I
just want to go to bed. Pop my sleeping pills and sleep it off! At least I have
no 'cravings or desires' to pop another Dexedrine to stop the withdrawal
process - not yet anyway... yikes. It kind of sucks, like I mentioned, there
have been some positive things that Dexedrine has given me. People say I am different,
in a good way, since I started taking Dexedrine. More focused, more calm,
easier to talk to, and a better memory (retaining more). I personally do not
see any of this, but as usual the person experiencing the change is usually the
last to notice. Then there are of course the other things like the decreased appetite
and the incredible change in my IBS. Since starting the Dexedrine I have lost
around 8 or 9lbs (over about 3 weeks), giving me a total loss of around 24lbs
over the last couple of months - thanks in part to coming off that stupid
medication (the name escapes me) that caused an increase in my appetite with
little to no benefits. So only about 600lbs to go... Maybe not quite, but maybe
another 36 or so pounds would make me happy - perhaps I should add exercise to
this new found eating less, or maybe not...
Friday September 28, 2012 - Once again we started early, and
headed for my son's 5th rTMS treatment, the end of his first week of treatments
- wow time flies... Don't tell anyone, but out of complete exhaustion and
laziness I let him skip school (I know I am a terrible parent). So we came
home, and we both went back to bed. He slept. I, on the other hand, did not.
Instead I wasted the day watching my iPad. I finally got up, and this is when I
started the obsessive research into rTMS, (I have done copious of research in
the past, but it has been a while). As mentioned the gathering of new or
additional information is to assist with the creation of the form letter for
ALL of you to send the government to force them to include rTMS under the Alberta
Health Insurance Plan, and also as mentioned the potential Facebook page
dedicated to force/encourage/promote governments and insurance companies to
cover rTMS. This new researching escapade has been the latest obsession to take
over my life (although I did take a moment to cook a roast, which I served with
potatoes, gravy, and broccoli). Through this research I am trying to do a price
comparison and availability of all the different companies/doctors around the
world that offer rTMS. Sadly most do not post their prices. I have also tried
to hit every 'Mental Health Support' website to see if there was any chatter
about rTMS or other potential treatments.
Only to discover that not only to they not mention any treatments, they
don't even talk about drug options or provide even resources for such info (I
think this is a big mistake on their part)... I spent well over 9 hours
searching, copying and pasting, following this link to that, reading this
report and that published paper, and even checking out health insurance
companies and government sites and their evaluation/classification of rTMS...
and still I have millions more sites to look at. Anyway, I finally went to bed around 2am,
which put me to sleep somewhere in the neighbourhood of 4am.
Saturday September 29/12 - We slept in (not as late as I had
hoped), but 11:30am is still way better than 6:45am. I had my toast, but this
day I changed out the tea for coffee. Then I stupidly sat down again with the
computer, and continued my rTMS research. I once again was consumed by one
website after another, almost forgetting to make supper (something I wouldn't
worry about missing except I need to feed my son, and I guess I should eat a
little something). I also realized too late that I forgot to take one of my IBS
medications, and my second dose of Dexedrine. It was too late in the day to
take either of them, so I figured I should prepare for a terrible evening. I
must say that the Dexedrine hangover still happened around the same time it
does every day, but a little less severe. This interesting outcome has prompted
me to try taking only one Dexedrine at my second dose time of the day, and see
what happens. Perhaps needless to say my stomach was not happy about me missing
either or both of those pills. I got to enjoy the usual IBS pains that I have
been free of since starting the Dexedrine, ugh. My son, when I saw him for a
brief moment, told me he felt strange. He wasn't sure if it was due to not
having a treatment that day, or something else. I personally do not remember if
I did, or didn't have any issues on the weekend following my first week of
rTMS. I continued with the research. I
still have millions of websites to investigate. Each new one I find seems to
have another link or two to new ones. There are zillions of Mental Health
support websites, some of which seem to have been untouched for many years and
others that are obviously just about collecting government money to write
reports for 'strategies/policies/etc'. Pretty
much doing nothing, but wasting money that could be going to actual mental
health initiatives. I definitely have a lot of information, and will have to do
a lot of editing and soul searching in determining what to include or exclude from
the Facebook page and the letter. Something I did discover, and wish I had
before I sent my letters to the government, is the fact that so far rTMS hasn't
been covered by government or medical insurance companies simply because 'they'
have deemed the treatment as 'experimental'. Why is it that even though Health
Canada gave approval to use rTMS for the treatment of depression in 2002, and the
United States FDA gave it the same approval in 2008, they still deem it
'experimental'? I will tell you why - to save them from spending money. How do
they rationalize this determination? They are only basing their classification on
OLD studies/trials. I am talking studies done from 1999 to around 2002-04. They
have not re-evaluated their classification of rTMS treatments even though there
are numerous new studies. The old studies were deemed to be inconclusive on whether
rTMS demonstrated any benefit. We know the technology has seen advances since
then, as has the techniques used to administer the treatment, and so has the
understanding of what the process is doing to the brain. So I searched and
search to find new studies - the NIH (National Institutes of Health), the go to
organization for research, has, (over an undefined amount of time their site
doesn't say when the first trial was or how long they keep the trials listed on
their site) conducted over 230 clinical trials of rTMS. At this time out of
those 230+ clinical trials there are 111 active trials going on right now.
Although these studies are done through NIH, they are taking place all over the
world. One of the new problems I have discovered, through my research, is that scientists
and doctors discovering how versatile rTMS is, plus the fact it is so safe with
little to no side effects and great benefits, they are starting to test it on numerous
other illnesses. This has fractured the trials, and I am guessing availability
of funding. Where before, most if not all rTMS trials were in relation to
depression, now a large percentage of the current trials are spread over
several ailments including; it's
assistance in helping to quit smoking, Autism, pain management, assisting stroke
victims, etc... When I entered this day into my journal it was 9pm and I just
wanted to go to bed - but another part of me wanted to turn my computer back on
and continue the research - but that would have been foolish... The Dexedrine
hangover was starting to really kick in; (it started at around 2 or 3pm, but
was really getting worse at this time), feeling tired (exhausted), weird
feeling in my chest, dry mouth, Phlegm build up in the back of my throat, and a
kind of headache (not really a full headache, but something) - although
thankfully not as nauseous as usual (I am guessing because I missed my second
dose of Dexedrine), and my stomach killing me. I just wanted to go to bed, so I
did - BUT - sadly I started doing rTMS research on my iPad until 2am - I just
couldn't keep my eyes open any longer - thank you drugs...
Sunday September 30, 2012 - Blog day - once again I didn't
work on my blog at all through the week, except for writing daily in my journal...
so here I sit at 4:30pm. I have been writing since just after 12pm (and I am
not done yet - I still have to proof read, and edit, then post and find
pictures - at least another couple of hours)... I just wish I would work on it,
even just every second day. It would make the Sunday post a lot less
painful. I started the day at 11am,
trying not to sleep in too late, so I can get to bed at a half decent time
tonight. I had my meds, coffee, toast and then I started this - I haven't even
showered that's not the grossest part - I didn't shower yesterday
either....ewww. I hate not showering, but I do like taking a break from
routine. When I finish this blog entry I really should get to work on that
letter, and the Facebook page, ugh. (But I still need to figure out supper, and
desperately need a shower.) The letter would probably be the easiest to finish,
of course that may be incorrect as I need to edit all of that information into
a short but informative document... Ugh again... I did remember my Colestid
this morning and I shall now go take my second dose of Dexedrine (testing the
new one pill theory, which I did). Let's see what happens (I'm still feeling
the hangover effects, which could be I should have taken the pill a little bit
earlier or since I reduced it my body still hungers for the larger dose - no
idea)... Alright that is my week, not overly exciting, but it is what it is - I
feel less than fulfilled, but moving on... (I finally finished editing (only
one read over, so ignore all of the bad grammar and any other errors) at 6:54pm
- I still haven't posted or found and placed pictures. Finally ready to post, pictures placed 7:32pm - writing for around 7 hours. What the hell?)
Talk to y'all next week...
