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Trials And Tribulations


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#1 Megssosleepy

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Posted 23 July 2012 - 08:54 AM

Gosh I'm tired today, well I guess I am tired everyday... really I am so tired of being tired!

1. I was wondering if anyone else found themselves to be very very sensitive to stimulants. I have tried 6 different prescriptions. All have been the lowest dose. My heart rate goes nuts, my poor jaw is all messed up, I get antsy, and jittery, and worse of all the panic attacks! Another issue with the meds is that I take such a low dose they don't really help me stay awake.

2. I am so frustrated! I feel like even people that say they understand they just don't. I'm tired of people thinking that its my fault that I am so tired. Does anyone find themselves very angry and jealous of other people?

3. Ive wondered why some days are so much worse then others... today for example I can not stop yawning. I decided to not take any stimulants yesterday... big mistake, I had the worse nights sleep in a long time... the dreams and constantly waking up. Sitting here at my desk my head keeps dropping and I am having such a hard time fighting these waves a sleepyness.

4. Anyone else have mood problems that seem to align directly with how bad the EDS? Today I am just grumpy, sad, and plenty of other yuck feelings.

I am not really sure what i am looking for, maybe just some reassurance that things will get better, or maybe I am just looking for someone to say they understand, no one seems to.

#2 shakysleppy

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Posted 23 July 2012 - 12:15 PM

I can honestly say i know exactly how you feel. I take Xyrem twice nightly and stimulants during the day for the sleep attacks. I have noticed that the stimulants keep my emotions in a roller coaster ride so to speak. I am easily agitated, jittery, and sometimes just depressed from trying to deal with this disease. Some days are good days and some are not, but overall I am tired of being tired. Tired of being called lazy, or hearing people talk smack behind my back. I wish people could live my life for one week without meds and they would change their tune about the way they view me and people like me. I have crazy dreams all the time, and I am up and down at night even on the max dose of Xyrem. Its a hard thing to deal with and I have found being on hear meeting people and making friends that you can talk to about this and not be judged has helped me a great deal to understand as well as given me tips on diet, vitamins, etc.. that help.

Maybe out of all i rambled off, some might help you out...

#3 Megssosleepy

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Posted 23 July 2012 - 02:14 PM

Shakysleepy,

Thanks for the response, the mood changes are really annoying... I told my dr i didnt want to try the Xyrem because Ive had such an unstable mood from trying all these different drugs... I am afraid of having something so easy to take to much of...

I recently started doing yoga, but have fallen asleep a few times in the rest pose... but at least its not dangerous lol! Its just hard finding the energy to make myself do it! I hope I can gain some tolerance to the stimulants, I deal with all the side effects because the alternative is so foggy. Sunday I decided not to take the stimulants (give my tongue and jaw a break) and I was up and down all night... dreaming while awake half the time. Its so crazy!

#4 TiredAgain

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Posted 23 July 2012 - 02:37 PM

Gosh I'm tired today, well I guess I am tired everyday... really I am so tired of being tired!

1. I was wondering if anyone else found themselves to be very very sensitive to stimulants. I have tried 6 different prescriptions. All have been the lowest dose. My heart rate goes nuts, my poor jaw is all messed up, I get antsy, and jittery, and worse of all the panic attacks! Another issue with the meds is that I take such a low dose they don't really help me stay awake.

2. I am so frustrated! I feel like even people that say they understand they just don't. I'm tired of people thinking that its my fault that I am so tired. Does anyone find themselves very angry and jealous of other people?

3. Ive wondered why some days are so much worse then others... today for example I can not stop yawning. I decided to not take any stimulants yesterday... big mistake, I had the worse nights sleep in a long time... the dreams and constantly waking up. Sitting here at my desk my head keeps dropping and I am having such a hard time fighting these waves a sleepyness.

4. Anyone else have mood problems that seem to align directly with how bad the EDS? Today I am just grumpy, sad, and plenty of other yuck feelings.

I am not really sure what i am looking for, maybe just some reassurance that things will get better, or maybe I am just looking for someone to say they understand, no one seems to.



#5 TiredAgain

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Posted 23 July 2012 - 02:53 PM

I have mood swings also, but I think it's normal when your tired and your sleep cycles are all messed up how can we be happy all the time. I never sleep through the night and I'm tired all the time. I take Adderall and it helps a little but my body and mind just shuts down a couple of times a day, It's like walking through a fog. There are some days that aren't bad at all, I may just feel tired but not really go into brain fog. I do find trying to stay on a schedule helps, I get up at 5:30am during the week and I go to bed early if I can like 9:30 and I try to nap around 4 or so.

Just remember your not alone

#6 Contemplative

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Posted 23 July 2012 - 10:26 PM

Dear Megs,



So sorry to hear of your trial and tribulations. I know when I am tired, and what gets to me is the unpredictability of it all though I too follow the wake at 5:30AM and go to bed at 9:30PM and have at least 2 naps, the sleepiness sneaks up on me and clobbers me for no apparent rhyme or reason, I get very irritable and on edge and then punish and admonish myself for being so "snappy". I have tried to be more forgiving of myself and be more gentle. As for heart rate and side effects, I have sinus tachycardia (fast heartbeat) and hypertension which is familial and have been on 3 different cardiac meds since I was 18...I'll be 40 next year.


I try to appreciate the good moments which are interlaced with, the shall we say, not so good moments. I practice gratitude that though others can not truly understand what I am feeling without being me, I have found a handful of folks who can still take the time to actively listen, offer me a hug, honor my need to be quiet and tune out when I'm sleepy and keep coming back to me and asking me, "What can I do for you? What would be the most helpful?" A dialogue I often can not even answer myself.



As geeky and trite as it might sound, I parent my inner child, coddle and offer myself support, and try not to use harsh or judgemental language regarding my ability to cope. I pride myself on surrounding myself with insight and awareness and while there may be limited relief from medications and their side effects, I have been fortunate to know down deep that I love myself and I am truly a good person. I am not my disease. I am a person trying diligently to take in advice, filter it for what it is worth, and share any strategies with others to be taken in, absorbed, and recycled.


In closing, I offer reassurance that after close to 17 years of night terrors that I actually grieve over the suffering they have caused, hypnagogic hallucinations that numbered close to 50+ per day, cataplexy that caused double vision and slurred speech that I've come to view as a personal characteristic not a handicap, the feeling of being unable to breathe, unable to move, etc, etc of sleep paralysis...frightening as it is, it is blessedfully a common experience that I can now rely on the fact that I have survived it before and take refuge in that, there are good days, sometimes even strung into a row. Wishing you nothing but hope and an open ear. My last remark, "Rest assured, you are not alone."

p.s. It has helped me to engage in hobbies and recreation and volunteer work when I can to both distract myself and define myself as much deeper. There is hope and the fact that you've expressed your awareness gives you such an advantage that many do not have. All the best to you and I hope you find a combination of lifestyle and medication and attitude that at least provides a little relief. Anything else, you should need, please ask.

#7 Megssosleepy

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Posted 24 July 2012 - 09:47 AM

Contemplative,

I have found when I do feel alone coming on here has been a big help. It amazes me when people are so much worse off them myself can have such a great outlook. I have been fortunate to have gained some control of my sleep paralysis with hallucinations. At one point I have had those terrifying moments many times a day. After learning that demons were not really pulling me into my mattress and taking me hell its been easier to convince myself that it is not real. I read yesterday of someone who had good hallucinations! I wish that was the case for me! I have found that knowledge has been power, and to know the mood swings and agitation are not "my fault" maybe I can start trying to forgive myself.

I just feel so angry that it took so long for doctors to stop dismissing me and listen. Ive been blamed/ teased and have blamed myself for so long... its going to take sometime to come to grips with everything. I do feel like I am in a fog staring off into space half asleep to often... everything just blurs around me.

How do I get my focus back? How do I forgive my parents and the medical system for letting me suffer for so long?

I am really thankful to all of you who have given a response to me... it brings tears to my eyes to know that you all understand, and I feel supported for the first time. Instead of being laughed at and misunderstood.

#8 thecatnapper

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Posted 24 July 2012 - 11:05 AM

I just feel so angry that it took so long for doctors to stop dismissing me and listen. Ive been blamed/ teased and have blamed myself for so long... its going to take sometime to come to grips with everything. I do feel like I am in a fog staring off into space half asleep to often... everything just blurs around me.

How do I get my focus back? How do I forgive my parents and the medical system for letting me suffer for so long?

I


What I have done, and what I can tell that Contemplative has done as well, is to get in touch with my own spirituality. I'm not sure if that's anything you are interested in but I thought I would share how much it has helped me. Spirituality is NOT about religion even though that's what most people associate it with. It is a very personal issue that you have to work on yourself. It is not easy and no one can tell you how it should be done because they don't live your life. For me it was about getting to know myself and accepting every aspect of who I am and what I believe and making peace with all of it. I got really into all of this because I had a lifetime of "bad" experiences and pain that I needed to come to terms with and heal from. I also had a lot of forgiving to do not only of others but mainly of myself. I didn't know then about Narcolepsy but the symptoms and fallout of it are what lead to a lot of the unpleasant interactions with others and me hitting rock bottom. Letting all of that go has given me more strength than I can explain.

That doesn't mean that I'm a happy camper all of the time or that I've been miraculously healed from my physical issues. There are still lots of days that it would be so easy to poke my lips out and be grouchy but now I have the coping skills to handle what comes my way as things have gotten more complicated for me. If it had not been for me learning to forgive the ignorance of others I would be stuck in a huge rut of anger toward my family, ex-friends, and my previous doctors for treating me as being defective and ignoring all of my non-emotional symptoms. Believe me when I say there have been recent days that I have wanted to slip into those old habits and start cussing those people out but I know that it would not benefit me in any positive way at all. Those feelings are normal but the trick is to not get stuck in them for a long period of time. I've also had to deal with a tremendous weight gain while searching for a diagnosis these last 3 or so years. I struggle with it daily, not so much because of how I look, but about how it makes me feel physically having to carry this extra weight around. I'm actually quite impressed with myself for how well I'm handling the vanity aspect. I've not totally accepted it or given up trying to get my health back. Hopefuly I'll be able to lose the weight in order to feel better but I will not beat myself up if I can't. Something that was a huge hurdle for me was letting go of being concerned about what others think of me. If people think I'm lazy and sit around eating all the time, then so be it because I know better. I have to focus on me and how I feel.

All of my suffering has made me a much more compassionate person towards others who suffer and my goal is to help them as much as I can with what I am able to do. Of course I would like to do much more but I accept that it's not always possible. I hope this helps a bit :)