One, Two, Three, Four....

I know that I can add correctly. Especially when it comes to my medications because I have epilepsy which affects my brain I have taken measures to ensure that I carefully count out my medications so I don't make a mistake. I choked on my pride and bought a large (because there were so many big pills) weekly med container at my local drug store and two (ok I did cave and picked out the decorative ones) portable med cases. Every Sunday I kick everyone out of the home office and fill my weekly box then squint my eyes as I have my husband check it for any errors I have made. (so far none -knock on wood) So today when I went to take my meds I was short and I realized I had ignored my iphone alarm when it went off earlier this week trying to tell me that I was out of one med. I called my neighborhood pharmacy. Except, it seemed it wasn't my counting I should have been worried about.

"Your insurance company won't pay for a refill until May 18th because we gave you a 30day supply on April 18th", was what my friendly neighborhood drug store clerk was telling me but what I was hearing was 'YOU ARE SO SCREWED!!!' I was already short a pill and not feeling well. How was I going to survive ten days without my medication?! I knew I did not mess up, I would have had to been double up pills during a dosing time and this was Topomax which with every 25mg increase puts me to sleep as in one bite of a red apple sleep. I've been walking my kids to school and getting out in the community so there's no way I have double dipped in the lullaby meds. "Can you please hold?" Oh, it seems I am still on the phone, I got a bit lost in my panic. Because this moment triggered that deep fear of what will I do now that I am dependent on a medication to survive? My country works on a for profit insurance companies not for people. I may be a hard worker and I may have had jobs since I was twelve but now I am not working for food, clothes, shelter I am working to keep alive because the wrong seizure and I can die or my brain can be severely damaged instead of just scarred as it has been thus far. "Your insurance will refill the script on the 11th", she tells me. Ok. I am told breathing a little easier. Before I ask what should I do until then, she tells me that they will make up a duplicate label and I will be covered until the meds are refilled. She alludes that she is aware this is not my fault, apologizes and tells me that they will be ready immediately. Considering my biggest issue is getting to my neighborhood drug store when it could have been so much more, I will take it. However, this makes me more resolved to be the change for those who are standing in a panic wondering how are they going to get the meds they need and then the ride to go pick up those meds. I said it before, epilepsy picked the wrong woman. Today Epilepsy 0  Me 1  (I did have help and luck on my side and I intend to play it forward)

Side Affects May Include....

TrOuBlEMaKeR

Why the video above? Because everybody has their guilty pleasure mine is CW's Vampire Diaries a show I would have stopped watching if Klaus has not appeared in the form of Joseph Morgan (though with spin off Originals I am not sure what I will be watching come Fall 2013 but I digress) my point it is something to look forward to and always makes me happy, when I can't indulge like my friends, can't get in my car and go for a drive, loud music hurts my head, do I really need to continue? Didn't you press the play button?

 Go on. I'll wait....

Now, the medications that are suppose to help with the seizures and headaches....

Well, let's say your me and you don't read the side affects cause you know you might not want to take them if you know they might cause blah, blah, blah, fatigue, possible kidney stones, numbness in hands, blindness, possible death. Just read the ones on the outside of the bottle that say drink lots of water, don't operate heavy machinery and may make you drowsy. That last one was an understatement. I think I swallowed the first pill of my first med and might have made it to my bed in time for slumber to set in, the fairy tale about the girl with the spinning wheel well, she fell asleep slower. That was the Kepra. Correction Levetiracetam because my insurance isn't going to pay for a brand if there is a generic available. "It doesn't really matter" you are telling me but I am incredibly sensitive to medications. It could. But we won't know. For now I am sleeping, sleeping and for what seems like the first month of my initial diagnois I am so very sleepy. Let's forget the Rapunzel reference I seem to be more like one of the seven dwarfs, I'll let you guess which one. The dizziness is also an issue, I feel as though I am stuck on a never ending carisaol desperate to get off but terrified of the consequences of stopping my medications I stick it out. My husband has to carry the laundry basket up and down the stairs for me, this is the most embarrassing thing this far, my arms cannot handle the weight. It's just so tiring. I am told my my doctors office that this all the medications side affects that I am to take it easy and it will get better. Ok. But I really need to get back to my life. I seem to begin this as a mantra, 'back to my life' as though everything is just going to return to as it once was. (I have not realized yet it will never be quite the same)

This is from the Keppra XR website. (note not exactly the med I am on)

Keppra XR^® can cause serious side effects. Call your doctor right away if you get any of these symptoms:

• mood and behavior changes such as aggression, agitation, anger, anxiety, apathy, mood swings, depression, hostility, and irritability. A few people may get psychotic symptoms such as hallucinations (seeing or hearing things that are really not there), delusions (false or strange thoughts or beliefs) and unusual behavior.
• extreme sleepiness, tiredness, and weakness
• problems with muscle coordination (problems walking and moving)

Common side effects seen in people who take Keppra XR^® and other formulations of Keppra^® include:

• sleepiness
• weakness
• dizziness
• infection

These side effects could happen at any time but happen most often within the first four weeks of treatment.

I start waking up a bit, the tiredness almost leaving but the headaches still just won't go away and that aura feeling is still there at times. I meet with my neurologist who suggests adding a second pill after talking with me and running a in house EEG. Topamax or rather Topiramate because once again I will get the generic. My first warning that this pill was going to hit me like a monster truck should have been that I had to take 25mg for a week before increasing to another 25mg until I achieved 200mg. There was of course the Sleeping Beauty bit again. Though the pins and needles in my hands and feet are always annoying as hell when they occur which is often. This long winter it was wicked fun when the cold hit my hands and they went numb and burned with pain from the cold. My favorite was when I went to take a drink from my coke cola not 30minutes after taking the first pill and had to spit out the sip as it tasted what I imagine battery acid tastes like (anything carbonated has the similiar effect). I am still waiting for the benefit of the 20 of so pound weight loss that others have experienced from this drug. But I must tell you that I am stupid as stupid gets. My concentration and memory was shot before but this med just adds to an already existing issue which just SUCKS! Too bad I am not thin hot and blonde (kidding). The headaches while are at times not continuously intense are still frequent and annoying as hell. At this time I am not willing to increase this medication the side affects are not worth the risk. Below has been taken from the Topamax website (please note not the exact drug I am on)

Numbness and tingling 

This is known as paresthesia and is the most common side effect of TOPAMAX. People have described this as numbness or "pins and needles," most often in the arms or legs. More people had paresthesia during the early stage of treatment; however, it didn't stop most people from taking TOPAMAX.

Fatigue
Some people may feel tired while taking TOPAMAX. More people reported fatigue during the early stage of treatment.

Taste change
Some people on TOPAMAX may have taste changes where food or drink tastes differently. This has been reported with carbonated beverages, for example.

Weight loss 
Some people may have weight loss while taking TOPAMAX. This seems to be related to the dose of TOPAMAX taken.

Difficulty with concentration/attention and difficulty with memory
TOPAMAX may make it hard to concentrate. Some people may have memory recall issues. This reaction varies, but people have described it as "difficulty finding the right word" or "losing my train of thought."

So the big question is really does the side affects outweigh the damage that happens to my brain when I have a seizure? Currently the answer seems to be time will tell because now it's more a question of how long can I tolerate these side affects? Will they continue to get better as my body adjusts to having them in my system? Should I cave and increase the Topomax to help with the headaches? My fave question I keep asking myself is that what is going to happen now with Summer coming and that my body seems to fail to sweat? It's going to keep getting interesting that's one thing I can count on.