Irritated? I'd Say So!

okay. so I hate insurance and everything about my narcolepsy right now. I can generally keep a positive outlook on things but I am really struggling right now. I got my diagnosis and started on nuvigil... shortly thereafter at the max nuvigil dose Xyrem was added in. It just didn't work well for me.... I struggled with it. I also had a baby who needed me sometimes through the night. Then baby number two comes along and well it was great pregnancy turns me into someone who doesn't sleep.... and of course I couldn't take the medicine either. Almost 2 years off all the meds I started with my struggling again.... I credit this to me breast feeding after my pregnancy>>until my hormones started changing back to 'non-baby- I didn't have much trouble. I began with provigil 2x a day...I did alright but the dr wanted me to go back on xyrem...small children= no xyrem, it was a simple as that. We hit kindergarten with my oldest and life went to crap.... I struggled to get myself up in the mornings, so therefore she was late...let's just say the school was LESS than understanding. They basically said too bad, so I felt I had no choice but to start the amphetamines>>> I did not want to do this at all> I already had to take a medicine, I didn't want to screw up my body anymore. From September to March or May ( can't remember which M month) the dose went up each month. I lost 50 pounds and have gone the past year eating maybe one meal a day because I had to take the meds on an empty stomach and I couldn't eat after taking them for a few hours without getting sick and sometimes throwing it up. My dr. wanted me to give Xyrem another go. So in December (2016) we started back with it. It did not work within 30 minutes, and it did not keep me asleep for 4 hours. I dreamt some of the worst nightmares ever while on it and had some seriously scary hallucinations with it. I would feel like someone or something was sitting on my chest making it hard to breathe. It was scary. I did it for almost two months..... the first month you gotta get yourself up to the dosage and I figured I needed to stay with it for a little bit in hopes that with time the side effects would get better. Nothing got better so I opted to stop taking it. At my April appointment the new doctor( because my other one retired at the end of the year) asked me how things are going. haha

I told him well I stopped the Xyrem for {the above} reasons. I am a year out from the final dosage change in the Ritalin and I cannot get myself up before 9:30am. My sleep is extremely erratic, do I need to go on... so he changed it up... well almost. You see these wonderfully terrible drugs are controlled substances. There are a lot of laws about them... I had just filled my last Rx so I couldn't very well begin a new, different controlled substance until those were gone... so he post dated the Rx and also added an antidepressant>> this is supposed to suppress REM. I have been on those.... 3 times a day.... for about a month and a half and I don't see they have done anything except make my already terribly dry mouth, even dryer. So my Ritalin is getting low.... those wonderful controlled substances laws... you have to be almost out in order to fill your next Rx. I have my husband drop off the Rx for the new drugs....I am already out of my short acting Ritalin.... The pharmacy calls and says, "I'm sorry these need a prior authorization." This means the whole weekend will go by before anything can be done. (Just in case you're actually reading this, that was May 19th) No medicine for a week(other than the provigil which at some point was moved back to once a day) So here we are in June. The insurance denied the PA for the long acting adderall but approved the short acting one.... no one called me about it. The pharmacy calls me saying you need to get this or by law we have to put it back and you'll have to get a new Rx. So I had to pick that up....I call the doctor's office and they say,"Oh you can pay out of pocket for the medicine.. otherwise you have to wait." Sure.... it is that simple..me a person who was on 100mg of Ritalin a day will be fine with only 20mg of adderall a day..... no big deal.

Yesterday I was able to pick up the second RX of the extended release adderall>> it's a 30mg capsule... it was prescribed so I would take two a day but my insurance said nope sorry it's not approved by the fda to treat narcolepsy. but we reviewed it further and see nothing to supposed a two times daily Rx so we will only pay for one a day.... yay me I took it this morning... I never felt a whoosh or a change... the whole day was a tired mess... granted my tired messes don't give me an excuse to not participate in life... so yes i still took my children to the park for the playdate we had scheduled weeks ago... was I tired yes did I fall asleep maybe once or twice.... Did I have trouble driving... I'm not going to answer that one... did I need a nap today.... yes probably ten.... am I highly frustrated?? YES.