Seeing as I am new to this group, I would like to take the time to reach out to all of you. If you could and feel comfortable doing so, share something about yourself and your story? There is nothing specific I am looking for, I just want to get to know the people in this group.
Narcolepsy can be a very hard illness to adapt to and live with on a day to day basis. A lot of the time, we don't have anyone physically around us who understand, but that is why we are here! So, just say hello and let's get to know each other a little more! If you don't want to post something, do feel free to message me, at any time. I will respond as soon as I can! :)
I am new too and I am hoping to meet more of you. I have a neurovascular disorder, erythromelalgia, and we share sleeping problems; by the end of the day I am falling asleep on my feet but having to spend much of the night out of my bed. I would love some ideas on how to cope with the tiredness.
So my name is Kristin, I am 29 and was diagnosed officially last year but I have been struggling with symptoms most of my life. I suffer from Sleep attacks, micro sleeps, hypnagognic and hypnopompic hallucinations, occasional sleep paralysis and cataplexy. My life is greatly disturbed by my condition as I cannot drive or work outside of my home and I am a single mom, so my life as a mom is disrupted by "N" as well. I take Adderall 4 to 5 times a day to function as I am unable to take any other medications.
My daughter, Caoilainn, is 2 going on 3 and is going in for a sleep study soon. She has displayed symptoms since birth of a central neurological sleep disturbance. Since I have a positive Narcolepsy Panel, the type I have is encoded in my genetics and she is at risk for the development as symptoms too if she tests positive.
Nel, I am going to do some research today into your condition to better understand what your battle is. It sounds like you have quite a similar struggle indeed. It is amazing how many "Narcolepsy Like" conditions there really are. I often wonder if some individuals have "N" along with other disorders but it is not diagnosed due to the other conditions they have, and then I wonder the other way at times, if "N" is handed out too easily in some cases. It is easier to get the medications to help with other conditions if you have a diagnosis of "N" rather than something like Hypersomnia or Chronic Fatigue Syndrome. This is very sad to me, because both of these and other conditions are very real issues, it is just insurance doesn't recognize them a lot of the time.
Hello Kristin! Does the Adderall give you any side effects? For me, I have lost a lot of hair and it looks thinner because of it. My face is also oily and I tend to have acne at times and my facial pores are big. I hate these things but the med allow me to have a life and to work. However I still am limited to the amount of things I can do in a day. After work I’m usually to tired to do much else but go home.
SleepinBeauty, I do not have any hair loss from Adderall. I have heard of this however, as being a side effect. Have you talked with your physician about alternative options for medication? There are many other options out there. As for the acne, I know that Adderall can also increase sweating which may be a cause of this but I am not sure. Here is a site that is good for side effects and other information. My doctors always tell me that WebMD is very reliable so I use them for everything lol. The link below is to Adderall side effects. Do you take IR or XR?
I think the hardest thing about erythromelalgia is that the worst of it comes on in the afternoon and lasts until 3.30/4am and should you want to get up at 6 that gives very little sleeping time. The rest of the day is more manageable if you do little, keep cool, avoid the sun like the plague, keep away from trigger foods, wear as little as you decently can and nothing on your feet and use cooling pads when you have to. Not much allowance there for having fun.
I am in the happy position of being retired but erythromelalgia can strike from babyhood and for those people, struggling through school and having to work for their living and look after their families it must be a daily nightmare.
KristinTMAAF said:
Nel, I am going to do some research today into your condition to better understand what your battle is. It sounds like you have quite a similar struggle indeed. It is amazing how many “Narcolepsy Like” conditions there really are. I often wonder if some individuals have “N” along with other disorders but it is not diagnosed due to the other conditions they have, and then I wonder the other way at times, if “N” is handed out too easily in some cases. It is easier to get the medications to help with other conditions if you have a diagnosis of “N” rather than something like Hypersomnia or Chronic Fatigue Syndrome. This is very sad to me, because both of these and other conditions are very real issues, it is just insurance doesn’t recognize them a lot of the time.