Tag Archives: narcolepsy

I’m in Texas, Y’all!

I have had my first two days at the POTS Treatment Center in Dallas and I’m feeling very hopeful. I mostly understand where the Doctor is coming from and what her treatment is trying to do- she says that the sympathetic part of the nervous system is in overdrive in POTS patients and that the biofeedback treatment aims to shut it off so the parasympathetic portion can take over.  This makes sense, except that I feel a lot of POTS patients have symptoms coming from both divisions of the nervous system. She talked a lot about how our blood vessels over constrict and cause headaches.  When I asked about the blood pooling caused by blood vessels not constricting enough in POTS patients, she said they only dilate upon standing. I know that’s not the case because I have issues with blood pooling while sitting and sometimes even while laying down as well.  I was also disappointed that she didn’t understand narcolepsy. She asked if I fall asleep while sitting up and when I said no, she implied that my diagnosis was inaccurate. I tried to explain that narcolepsy is so much more than that and has a wide range of symptoms, but I’m not sure if she believed me.  I was really surprised that she wasn’t more familiar with narcolepsy, given that it is a neurological disorder. She still seems very intelligent, though, as well as very compassionate. She talked about how bad medications are and how this program will allows people to get off their medications and participate in normal sports and activities. I’m not so sure about that. I am expecting to see improvement, but I’m not sure that this will completely cure me. I think it will really help my stress levels and anxiety as well as my health, which is what I’m most excited about.

Overall, I’m feeling very happy and hopeful. My sleep schedule went out the window a few days prior to leaving because my anxiety levels were so high. I was up worrying until 3AM every night. I just don’t feel like I can handle another let down. There has been so much money flushed down the drain on alternative doctors who claimed they would cure me and then didn’t help at all. I don’t know if I can handle being crushed like that again. And I don’t know if I can handle the disappointment my mom would feel if this treatment didn’t work for me. It was really hard watching her write the $4,500 check to the center Monday. I’m trying not to think about it too much, though, since Dr. K says I need to be under NO stress for treatment to be effective. I am trying to just stay realistic with what I’m expecting from this trip – if results are even better than I expect, great! If not I won’t be disappointed.  Just getting away from the stress and drama of my home has done me a world of good. I’m SO much happier here. Today was also wonderful because we had a group session and I got to meet other people with POTS! There were two teenage girls, ages 12 and 17, and a woman who was 51. We all related to each other so much. I got the girls’ numbers – they are both so sweet! They have all had POTS less than two years, so they’re still new to the world of the chronically ill. Hopefully they will see major benefits from treatment and won’t have to stay in this world very long! I wish no one had to live like this, but I don’t know why God seems to choose the sweetest people to do so. Why are all the chronically ill people I meet so awesome? Are we naturally awesome, or does chronic illness change us and make us that way? That’s some chicken or egg philosophy for you.

Must Stay Awake…

Today I tried something new with my sleep schedule. I have always struggled with getting to bed at a decent time, but lately it’s been worse than ever. It’s a rare and good day if I’m up by 3:30 (I can’t believe I’m admitting that on the internet). Lately I’ve been waking up closer to 8 at night. Part of it is because after 11 at night seems to be the only time I feel decent and I hate cutting back on that “good” time.  Part is because depression gives me the worst feelings of fear and loneliness when I try to sleep and I prefer to wait until someone else is awake so I feel safer and less alone. And part of it is so I can avoid my brother.  I hate admitting it, but it’s true. I’ve had a brother for almost a year now – my family chose to adopt a 14 year old. It’s been a real struggle due to his behavior and angry outbursts. He’s a good kid and I really want to be a good big sister to him, but it’s so hard. I feel like I can never say or do the right thing when I’m with him. It always ends with him getting mad or storming off or pouting. I know it’s selfish, but I feel like I have so little to give right now as I struggle to handle college part time with my health. Every encounter with him drains my energy. I just kind of gave up and started not leaving my room for the day until 9:30, when he goes to bed.

But I want to change. My current schedule is not good for my health or my family. Sometimes it seems impossible, because I feel like my narcolepsy controls me. I often spend hours at night trying to sleep to no avail, and entire days where I’m literally “stuck” asleep. I woke up for the day at 10:30 Sunday night, frustrated and angry with myself since I had planned to spend the day studying for a physiology test due the next day. I pulled an all-nighter in preparation and, instead of crashing in bed once the test was over like usual, I decided to try something new. My sleep doctor had the suggestion of falling asleep an hour later every night until I circled the clock and got to a decent time for bed. This seemed way too difficult to achieve, but I thought starting when my body was already completely screwed up would make it easier. After my all-nighter, I had my test and then therapy and didn’t get home until 4. I then ate “dinner”, got ready for bed, and took my sleeping pills. It felt REALLY strange, especially right after daylight savings, but waking up at 7:45 this morning with no alarm was incredible!

The rest of the day has, unfortunately, been not so incredible. My level of fatigue is so high even with my usual 12 hours of narcoleptic sleep that trying to function while sleep deprived is completely miserable. My emotions are in overdrive – sad things are so sad I could die, mildly funny things are the best most humorous things I have ever heard. My body feels like it’s trying to wade through a pit of tar, and it hurts even more than usual.  I’m so spaced out that I forget what I was doing 30 seconds ago. I prefer the days I’m in a crash and can’t sit up for more than five minutes than today. I can’t accomplish a thing under either circumstance but when I’m in a crash I have no control over it. Right now I know I could just sleep for a few hours and then I’d be able to do homework – that makes it really difficult to want to push to stay awake all day. I am also really lonely. I woke up when my dad and brother were gone for work/school and my mom was still asleep. I can’t see my mom during the day because she teaches and I’ll have to go to bed before she finishes. We normally hang out at night watching “our” tv shows and joking around. I’m wondering if it’s worth it to lose that and lose the one time of the day I feel alright. Ideally we could all be together as a family and this schedule should mean I can see other people more instead of less…I hope that’s the case. Right now the sleep deprived depression is getting to me and making it for a few more hours sounds impossible. I’m going to try incorporating a short nap into my day tomorrow to see if that improves things.

Very boring post, but as previously mentioned I’m barely awake.