Ferritin Level

[rthom]

How did you get your marks with memory problems, I had to quit school because my best was very low--and i'm used to getting high marks. Just couldn't retain anything without the sleep. You?

[Chipmunk]

I'm not sure, honestly. We were rarely traditionally tested in grad school but writing research papers still requires lots of memory and synthesis. I think it was when I started on Adderall that I started doing better (I have ADHD-had it since I was a kid but never medicated before a few years ago). It helped focus my mind and possibly keep me on a regular sleep/wake schedule. It can exacerbate the WED though so I have to carefully balance my dosage so I don't get caught in a feedback loop.

Or maybe I've always had a crappy memory so I don't notice the difference.

[badnights]

Bonnie, call your doctors office back and make sure he's referring you to a neurologist. He offered, you said yes; make sure it's happening. He's out of his depth with you, but was definitely on the right track in referring you, and a neurologist is the right life-form, because WED is a neurological disease. So you're best off to confirm that it's really happening.

Also if you get a chance to talk to him (maybe via email?) inform him that a third drug called Horizant has been approved for RLS in the US and you want to try it. (It probably won't fix it up but it might help tide you over til you see the neurologist).

Finally, sleeping pills of any sort are downright dangerous to take when the RLS/WED is not controlled. What your doctor does not realize (and SHOULD) is that WED can be much much stronger than any sleeping pill, so we are forced to move while our brains are mostly asleep, stumbling around and potentially hurting ourselves, and suffering horribly in that state.

[ViewsAskew]

My Ph.D program let you go part-time -- maybe yours would too? (or you could come up here to Madison

I do like Madison a LOT as a city and college town. Just not ready to leave Chicago for another snowy, cold place . Now, San Diego? Maybe. Or even a temperate place, like Vancouver. But cold and snowy? Brrrrr. I'd never leave my house to go to classes. Oh, right, I can go to Capella and get my Ph.D and never leave my house! Guess I can live anywhere, then

[badnights]

Have to throw my two bits into this grad school conversation too, since I have JUST finally submitted my MSc thesis and that's why I haven't been around much. It took me 6 six years, but should have taken me a max of 3 (first year being full-time at school, the second and third part-time while working full-time). I developed this wild worsening of the RLS I had always had ( but had no name for) in the second year, after a series of 3 knee operations. I was basically useless for the next 3 years until we got the meds figured out. I actually can say with fair accuracy that I was about 20% of my normal capacity, because a task that should have taken me a day would take me 5 days. etc.

I would read a sentence over and over and struggle to understand it. Any normal (healthy) person would say "Gee I'm tired. I'll go to bed, and try again when I'm fresh." People with inadequately treated WED don't have that option. So I would read it over and over til I got it, then try the next sentence. Two or three sentences later I would have to go back to the first one and figure it out again.

There were better times, but I couldn't afford to only work in the good times, they were so few. So I worked through the bad times. It was humiliating and humbling and soul-destroying and perhaps soul-re-building (I haven't decided yet, but maybe for the sake of my sanity I will pretend something good came of it). And the worst thing was, no one understood, least of all my supervisor who was 1000 miles away and sent me a letter in Jan 2010 calling me lazy and selfish, just prior to my switching meds and going through my worst augmentation-style withdrawal hell. What a psychological blast to receive at a time like that.

Anyway. It's bloody hard, insane, and I have quashed my dreams of a PhD. I'm certainly not going to race my son to one, as we joked about at one time; he has almost beaten me to a Masters!

[rthom]

I'm very sorry to hear that you have had that experience, i do have a thought about the good thing coming out of it though.
I've had that exact same thing happen over and over and.... Even in school i'd get help to learn something and could do it at the front of the class but could't do it once in my seat, like it had been washed away completly! The reading thing is the same, my wife paraphrases important things for me when it's bad (i didn't before link it to my sleep, or rls peaks). Wow, i'm so glad you took the time to talk about it here. For years around my family i've said "i'm not stupid..i just can't remember what the point of that was, or understand what i just read. Was tested once as an adault for learning disorders, and was fine--(probably got sleep before), so that just made me feel worse. My teacher in the college suggested i leave as i wasn't even close to being able to do it. That was with a tutor at home, imagine what she'd said if she knew that i had one!
I have been so frustrated by peoples assumptions of what i should be able to do, and the abilities of others around me being so easy, that doing it seems all but impossible. The reality of our society is that if you didn't learn it in school your skills aren't worth much. Even if you have a talent (which usually means that by nature you can do something better than most), you are not respected for it and being paid well for it is very tough. So, I'm using my talent as my job out of necessity but when it comes to respect from others or pay i have to fight to keep my head up. I am so grateful for my talent and that i like it, even though it's not what i want to do, it gives me a sense of purpose and some income.
This is the first time i have understood what is happening and to you i am grateful, for me something good has come out of your experience, and it's a huge thing--a life long struggle has been eased--I knew i wasn't stupid i just couldn't figure out how to be smart, and now i know it really is and wasn't my fault! That's huge for me, thank-you.

[badnights]

I admit I questioned it sometimes myself, but unlike you, I had the benefit of 40-odd years of being "smart" to compare to. Even so, I still wondered at times if I was just imagining my past smartness :~ Gee, it still blows me away how much a connection to other people can mean, the knowledge that we're not alone with our particular brand of problem; and how much it can mean to realize there's a solid physical reason for our distress, and we're not just crazy or something.

[rthom]

yah, it's so important to help undue the old tapes. when your young and it's like this you are such a disappointment to everyone, and that seems the best you can hope for. Still it hurts if you are truly trying. It was not unusual for me to be up till 3am doing homework and yet still not able to pass or just making it. The teachers liked me and some felt sorry for me and passed me anyway, it was a kindness. Don't know how appropriate or right it was but really --i could not do any better. Yet on things tactile--not requiring reading-understanding i was almost brilliant. Thus the confusion, how could i be so stupid if i was so smart?
The tactile things were stuff i could look at and figure out--pictures--not things i needed to rely on my memory for.
I was so impressed i nearly woke my wife in the middle of the night to show her(good thing i didn't she said yah, like she knew that all along! and that apparently is the case--wished she'd shared this revelation with me. )
thanks again
i was thinking of other conversations you've had here and wondered if this is your gift--well seems so from this end.
randy

[badnights]

What a wonderful thought. That I could help strangers with love from afar.