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#1 Kimmery

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Posted 09 March 2011 - 10:56 PM

Hi All,



My name is Kimmery. I was just officially diagnosed with Narcolepsy June of 2009. I am pretty sure that I have had it since I was about 15 or 16. I live in Des Moines, IA and have three great sons and one grandson. My youngest is14 and he has bipolar disorder and Asperger’s Syndrome, I also believe he has narcolepsy. His teachers have been saying for a couple of years now how he is always falling asleep in class. I have an appointment with my sleep doctor next week an I am going to discuss his issues with doctor. I also have bipolar disorder.



The reason I am posting tonight and in this section of the message board is because I go to Kaplan University online fulltime. I did not know that there were provisions in the Section 504 of the Rehabilitation Act for colleges. I have had an IEP for my son for years but never knew that the 504 pertained to colleges and universities as well.



I just finished my third term at Kaplan and unfortunately flunked, I flunked my second term too. I had a GPA of 4.0 and was on the President’s and Dean’s list my first term.



Anyway, I won’t bore you with all the details but towards the end of this term I had emailed one of my professors to let her know I wasn’t going to get another assignment in on time. I explained to her that it was due to my bipolar and narcolepsy. They truly do play havoc with each other.



She basically didn’t say much but had advised me to reach out to my academic advisor and speak to her about accommodations for my disabilities. I was pretty upset that nobody had mentioned this to me last term and that this term only had a little more than a week to go before someone tells me that those are even available!?



I composed a letter this morning detailing my disorders and how they really mess with my head and body. If I am not having numerous sleep attacks every day then I am so manic I can’t sit down for 5 minutes. If I do manage to sit down I can’t concentrate on what I am reading with so much going through my head. As a matter of fact I have only had 1 ½ hours’ sleep since I got out of bed Monday morning. I have been in a complete manic phase since Monday. It’s pretty bad this time. I had to go out on STD from work.



The lady at Kaplan said that when I filled out the papers she sent for my request I had to be very specific as to what accommodations I needed/wanted. That’s why I am posting here. I couldn’t come up with too much that would be helpful for someone with narcolepsy and bipolar. I wrote down that I wanted extended time to turn in assignments and longer times to take the quizzes if they were timed. (Most of them are untimed other than the ones we take for finals.)



That is really why I didn’t pass the last two terms. I was either manic, depressed, or having sleep attacks, hallucination, writing dorky stuff, etc.



Has anyone else gotten any kind of accommodations for their classes and if so would you mind sharing? I met with the Campus Dean this evening and explained to him that I really needed to do a bit more research on what might be logical accommodations.



BTW, does anyone else HATE narcolepsy as much as I do? For the last several years it has basically consumed and ruined my life. A few years ago I had to quit driving because it got so bad. For some reason it is awful again. Does anyone else feel like they are maybe a tad better and then a week or two later ten times worse? I do.



I currently take Nuvigil 250mg; I take that at 8am every morning. I also take Dextroamphetamine 10mg 3-4 times a day. If I’m lucky I can get 2-4 hours of benefit from the Nuvigil. Although there are days it’s like I didn’t even take it and I will be out an hour after I took it.



Well sorry about rambling and getting off topic more than once, that’s a bipolar thing, I do the same thing when I am talking.



Hope to get to know many of you here and that I can learn to live with this curse.

Kimmery

#2 sleepless sleeper

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Posted 09 March 2011 - 11:41 PM

when were you dx'd with N? when were you dx'd with bipolar? if bipolar was dx'd first, did you have such pronounced manic episodes before you began taking stims?

it was my understanding that the doctor had to write a 504 letter, and the doctor should state what is needed in an IEP. your doctor should work with you to determine what is needed to make accommodations for you. your school is really amazing if they are making accommodations for you such as turning in work late without a doctor's order.

i have no idea what a person with bipolar needs for accommodation.

some pwn ask to have extended test times. the ability to turn in assignments a little late. the right to record the professor so you can make sure you can take notes when you're able to. i don't know. it varies for different people. it's whatever you need specifically for you. talk to your doctor and ask what he usually recommends for someone whose symptoms are similar to yours???

#3 merrymom1013

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Posted 12 March 2011 - 06:27 PM

[There are no IEPs for college. You want to have the doctor be specific about how your disability impacts you & tie that to the accommodations. Extra time is the main thing- copies of notes etc don't really apply if you are doing classes online.

#4 sleepless sleeper

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Posted 12 March 2011 - 06:47 PM

does the doctor write a 504 letter, merrymom?

#5 merrymom1013

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Posted 13 March 2011 - 02:58 PM

It is up to you to provide the school with medical documentation from the doctor, so yes. Some schools are very flexible about what kind of letter they'll accept, others detail specific things & even forms. It's important to look on the school's website (search disability services or accommodations) before asking for the letter. You want to give them exactly what they need. Not all schools are equally accommodating, but if they accept federal funds they have to offer some accommodations.
The disability office will take that information & decide you are eligible, then typically meet with you to determine specific reasonable accommodations. They will give you a letter or form that you can give to the professor, but you need to be taking the initiative at every step (continually reminding the prof you need extra time etc).
The accommodations aren't retroactive & they don't have to offer beyond what they determine to be reasonable or guarantee you success. For students used to having a 504 plan or IEP in the K-12 setting, it is an adjustment.

#6 Kimmery

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Posted 23 March 2011 - 12:44 AM

when were you dx'd with N? when were you dx'd with bipolar? if bipolar was dx'd first, did you have such pronounced manic episodes before you began taking stims?

it was my understanding that the doctor had to write a 504 letter, and the doctor should state what is needed in an IEP. your doctor should work with you to determine what is needed to make accommodations for you. your school is really amazing if they are making accommodations for you such as turning in work late without a doctor's order.

i have no idea what a person with bipolar needs for accommodation.

some pwn ask to have extended test times. the ability to turn in assignments a little late. the right to record the professor so you can make sure you can take notes when you're able to. i don't know. it varies for different people. it's whatever you need specifically for you. talk to your doctor and ask what he usually recommends for someone whose symptoms are similar to yours???



#7 Kimmery

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Posted 23 March 2011 - 01:10 AM

Sleepless,

I was dx'd with N a year ago this May. I was dx'd with bipolar about 15 years ago.
Unfortunately yes, I have always had full fledged manic episodes. I have thought that I was indispensable and walked out in front of cars in a 4 lane street during rush hour. I basically dared the drivers to stop. It gets pretty bad sometimes. The only time I can honestly say that any medication I have taken for the narcolepsy that 100% put me into a manic phase was the first time I took Nuvigil. I was literally running around the office giving everyone high five's because I felt so awake, so back to ME. I was up for 2 days that first dose. I did continue to take it and things calmed down drastically. Unfortunately I had to quit taking it because we thought I was having an allergic reaction to it.

I just started taking it again a couple months ago. The allergic reaction was from something else and not the Nuvigil. The strange thing is though that there was no manic this time but there also wasn't the old "me" either. It really doesn't work all that well anymore. I take it at 8am every single day. There are days, many, that by 9:30am I am out like a light.

I currently take the Nuvigil 250mg along with Dextroamphetamine 10mg. I am only supposed to take the Dextroamphetamine 4 times a day, however I find myself needing at least 2 10mg pills at least 3 or 4 times a day just to function and try to keep my job.

I found out that my disabilities and accommodation request would fall under the Section 504 of the Rehabilitation Act. Two weeks ago I met with the campus President and gave him my formal request for accommodations. I found out late last week that my request were approved.

Basically the request for bipolar are the same as for the narcolepsy. With the bipolar if I am manic I absolutely can Not sit still long enough to read the material and putting my words down on paper are almost impossible when my thoughts are spinning around in my head. The depression basically has the same effects. Then of course the narcolepsy creates a scenario where I can't stay awake long enough to work on a project, read the material or attend seminar.

So the accommodations for all three disorders are, longer time frame to turn in work, they gave me 5 extra days, extended time on tests and quizzes, they are allowing me 1 1/2 hours extra time for that. I also requested hard copy text books for every class. Since I am an online student and don't attend campus we have a lot of e-text books. I actually prefer the e-text but if I am having a bad night and having several sleep attacks if I have a hard copy I can stand at the dining room table or the kitchen counter to read the material.

In an online environment the professors can give extensions or make exceptions at their discretion. The professors are usually pretty good about allowing this extra time as long as you let them know you are having issues and keep them up to date. I had a couple of great professors one term. They allowed me extensions for most of my assignments. I passed those classes with A's. However this term I had two professors from H***. They not only didn't grant me anything they NEVER even responded to my emails when I did inform them that I was struggling.

I am currently filing a grievance against one of the professors because of what he said in an email to me. There are several reasons I am filing the grievance but the main was is because of things he said to me.

I appreciate you getting back to me and I apologize for taking so long to reply. For the last 21 days I have slept 5, I was in the second worse manic phase I have ever been in. I too thought it might be because of the stims. However I went several days without them and there was no change. I am currently researching what the two disorders do together, meaning are some symptoms of either disorder more prevalent when dx'd with both? It's going to be a long research because I haven't found much yet.

Kimmery






#8 ImSleepin

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Posted 03 April 2011 - 10:47 PM

I definitely asked for accommodations with my college, too. I take my classes online as well with Strayer. I went to my dean one day and explained my condition. He said that all I had to do was get a letter documenting the condition and that I would need to fill out paperwork with the Student Services/Disabilities office. One of the questions was asking what accommodations I would need. I asked for extended time to complete assignments when needed.

If it at all helps, here is a link to the disability forms/apply for accommodation from Strayer. It may give you some insight as to what to ask for in terms of accommodating your conditions: https://icampus.stra...-accommodations If that doesn't work, let me know and I can try to just attach the PDFs here.

In the letter my doctor wrote for school he basically said (and I've made this very rough haha):

To Whom it May Concern:

My name is Dr. ___ and I am currently treating ____ for narcolepsy and migraines. Narcolepsy is a sleep-wake disorder which causes excessive daytime sleepiness, etc. Treatment includes medications to alleviate the EDS as well as taking regular naps when needed.

If you have any questions, feel free to contact me at _____

Thank you,
(doctor)


It was longer than that and sounded nicer, but hopefully that will give you and your doctor a rough idea of what to say/write.

#9 Kimmery

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Posted 04 April 2011 - 08:56 AM

I definitely asked for accommodations with my college, too. I take my classes online as well with Strayer. I went to my dean one day and explained my condition. He said that all I had to do was get a letter documenting the condition and that I would need to fill out paperwork with the Student Services/Disabilities office. One of the questions was asking what accommodations I would need. I asked for extended time to complete assignments when needed.

If it at all helps, here is a link to the disability forms/apply for accommodation from Strayer. It may give you some insight as to what to ask for in terms of accommodating your conditions: https://icampus.stra...-accommodations If that doesn't work, let me know and I can try to just attach the PDFs here.

In the letter my doctor wrote for school he basically said (and I've made this very rough haha):

To Whom it May Concern:

My name is Dr. ___ and I am currently treating ____ for narcolepsy and migraines. Narcolepsy is a sleep-wake disorder which causes excessive daytime sleepiness, etc. Treatment includes medications to alleviate the EDS as well as taking regular naps when needed.

If you have any questions, feel free to contact me at _____

Thank you,
(doctor)


It was longer than that and sounded nicer, but hopefully that will give you and your doctor a rough idea of what to say/write.



#10 Kimmery

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Posted 04 April 2011 - 09:26 AM

ImSleepin,

Thank you. My sleep doctor wrote me a short note, on a prescription paper, that was more like something I would give my 3rd grade teacher to excuse me for a doctor's appointment. I wasn't much too happy. However my psychiatrist wrote an awesome letter explaining the Narcolepsy and the Bipolar. He briefly explained the symptoms of both disorders and then went into greater detail on how they affect me and how they affect each other. He was quite detailed about how they both affect my life in and out of work and school.

I was so happy that he wrote it the way he did. I would have had to have gone back to my stupid sleep doctor to get a more detailed note. I was granted the 3 accommodations I requested. Longer time to turn in assignments, longer testing timeframe, and hard copy textbooks.

A couple weeks ago I went for a second opinion. I told my then current sleep doctor I was going and why. It wasn't that I was unhappy with they way he was treating the narcolepsy but I merely wanted to get another perspective, another doctor's point of view. I could tell at the time that the nurse was upset about this. I went to the second sleep doctor and he basically said the same thing that my then current doc said, "It's narcolepsy, it is what it is, you have to live with it." When the first doctor told me this I felt like it was a death sentence, when the second one said it that was a nail in the coffin. I CAN'T just live with it. I have a life to live, a job, I go to school fulltime, but on top of all that I have a special needs son that needs me and needs me AWAKE. The last couple of days he's missed his meds because I was having sleep attack after sleep attack, I had no idea what time it was. When he was little there were several times I had lost time. I would come home after work, fix supper and that's all I would remember. Next thing I knew it was like 8 at night the house would be cleaned, or things rearranged, and I had no idea how they got that way. The worst part was I had no idea where my son was at. Or even worse what the heck did I say to him. Scary!!

The only other thing the second doctor said that he might change is to put me on Xyrem. He said he thought it might work well for me. He suggested that I talk to doctor #1 and get his opinion. He said that if doctor #1 didn't want to try it then to let him know and he would take over my care. I called doctor #1 and let his witch, oops, nurse, know what doctor #2 said. She immediately said to me, "If that's the way he feels why doesn't he just prescribe it for you then?!" I kind of stammered as I was surprised she was acting so nasty. I said I was sure it was because he didn't want to "steal" his patients away. She said she would ask the doctor but she was sure he ask the same thing she just did.

About an hour later she called me back and stated that the doctor said, "Well, if that's the way Dr. X feels let him go ahead and prescribe it for her, and she can just continue her after care with him as well." I was floored. I had just been booted out! I have NEVER been treated so rudely. At that point I was like, "well, no problem, the other doctor said to just give him a call." So, I did. I spoke to his nurse and she said she would talk to him and get back with me. When she called me back she stated that he said the ONLY way he would take over my care was if I stoppped taking ALL my medciations and retook the sleep study test.

He had asked me in my first appointment if I had quit taking all my medications for 2 weeks before the test. I told him there is NO way I can quit taking everything for 2 weeks. I told him that the medications I take that might cause drowsiness I had not taken for 5 days, the others absolutely do NOT cause drowsiness. He thinks because of that the tests I had weren't conclusive. I let his nurse know that I was currently home from work on short term disability due to my bipolar. That I had been in a major depressive mood for 2 weeks already and there was absolutely my psychiatrist was going to even think about allowing me to quit taking my meds right now. I also informed her that if I quit taking all my meds I would more than likely lose my job as I can NOT work without my medications. I also let her know that if I quit taking my bipolar meds for that long I would be in the nut house and wouldn't even be able to take their stupid tests again. By this time I was hysterical and bawling. She said she would talk to him again.

She did and he was adamant she said that I do it his way or he would not treat me. Well, I just can't do that. I am now going on my 4th week of being off work and have no sleep doctor. Thank goodness doctor #1 had given me 3 months worth of prescriptions, I am required to get my meds through the mail. I at least have meds that work a little, better than nothing. There are only 3 sleep centers here and I have an appointment in about an hour with the 3rd one. I suppose if they tell me I have to do the sleep study again I will have no choice. I sure hope not because I know I will not have a job if I have to stay out on short term any longer.

My, my, I've rambled. But things are a bit better with school, and worse otherwise. :-/

Take Care!


#11 none

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Posted 07 April 2011 - 08:22 PM

I hate narcolepsy so much that I don't accept having it and I refuse to take naps now that I know what it is. Even though I don't take those useless naps, I still have my time wasted in different ways... I slow down and my eyes won't stay open, I always battle inside of me. After all the fighting in my inner self, I managed get something "Done" for school but of course not to my satisfaction...and what happens is I get worse, and fall behind in my school work. And at this very moment,I feel like I am failing this semester.

#12 Kimmery

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Posted 07 April 2011 - 08:55 PM

I hate narcolepsy so much that I don't accept having it and I refuse to take naps now that I know what it is. Even though I don't take those useless naps, I still have my time wasted in different ways... I slow down and my eyes won't stay open, I always battle inside of me. After all the fighting in my inner self, I managed get something "Done" for school but of course not to my satisfaction...and what happens is I get worse, and fall behind in my school work. And at this very moment,I feel like I am failing this semester.



#13 Kimmery

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Posted 07 April 2011 - 09:34 PM

I know exactly what you mean! Even though I was just diagnosed a year ago I have suffered from it quite severely for about 7 or 8 years now. Have you asked for accommodations at school? I didn't even know they were available to college students. I have them and so far they are helping. I do all my classes online. There would be no way I could attend college in a regular classroom. I would 100% sleep right through the entire class. By taking them online I can stop and get up whenever I need to take a break. If I feel a sleep attack coming on or keep having them I can get up with my book and go to the dining room table or the kitchen counter and stand there and read.

The 3 accommodations I asked for and was granted were, longer time to hand in assignments. I get an extra week. Longer time to take the tests and quizzes. Some are not timed but the ones that are I get an extra 1 1/2 hours. Also a lot of my books are online textbooks. I requested hard copies so that I don't have to be a the computer all the time. You really should ask for accommodations if you haven't. I am currently on Academic Probation because I failed my last two terms. All because I didn't know I could ask for accommodations.


Okay, so, back to hating this crap. I went to the other sleep doctor Monday. You wouldn't believe what he told me. I had taken all my previous sleep studies, doctor notes, and genetic test results with me. I also re-did the Epworth Sleep Study, (can't remember if that's the name). I also filled out all the documents and questionnaires that I have filled out 3 other times already. I answered yes to absolutely everything, things like the hallucinations, losing track of time, falling asleep while eating, driving, talking, I even stinking fall asleep standing up, paralyzed in the mornings most of the time. When I am going into or coming out of a sleep attack I say some of the most bizarre off the wall things. Absolutely the ONLY symptom of N I don't have is the cataplexy. That's it. I even had the genetic test to see if I was predisposed to having it, it came back positive.


So this doctor tells me he can't say that I do and he can't say that I don't have N based on everything I told him. One of the first things he said after that was, "I mean, you don't have the hallucinations, you don't fall asleep driving, you have trouble falling asleep and most people the stimulant medications work for them, and they are not for you." Umm....okay, so I am thinking he really didn't read anything that it took me over an hour to fill out! That was my first thought, plus I only have half a tongue now because I had to bite it off to keep from telling him off right then. I knew I had to watch my p's and q's because he was the last doctor that might be able to help me.


The second thing I thought about was all the posts on here and another narcolepsy discussion board on how there are many, many, many people with narcolepsy that the meds don't do a darn thing for them. Or that sometimes it can take months to find the right one or combination. I have also read that in a lot of online information. The other thing I have read many places is that for some reason people with n actually do suffer from insomnia quite often. I was reading a report that said it may be because our REM sleep is so messed up.

After I got the bleeding stopped from my tongue and the anger out of my system I finally spoke. I told him I do hallucinate, both when going into a sleep or coming out of. I told him I do fall asleep driving that's why I only do it when I know it's just a quick trip to the store. I didn't say anything about the insomnia and the fact that the meds don't work for a lot of people.


What he wants to do is 3 things; First he wants me to get on a good sleep schedule, making sure I get up at the same time everyday for 2 weeks, he thinks that will matter. I explained to him that I had done that at the beginning of last year when I thought it was just lack of sleep. But I didn't do it for just 2 weeks, I did it an entire 2 months. NOTHING, still just as bad sleep attacks.

He then was going to call Dr. #1 and ask him why he dumped me, and if he hadn't dumped me what was his plan going to be going forward. He is also going to ask Dr. #1 if he can then consult with my regular doctor. In the meantime he was going to consult with the other sleep doctors that are in the same clinic and see what they thought. When that is all done he will talk to my regular doctor and see if between himself, Dr. #1 and my reg doctor can all come to a decision on what to do going forward.

It is absolutely ridiculous that I am going through this. I just want someone to help me. I have suffered from this for so long it truly is driving me crazy. It's bad enough having bipolar and sometimes actually not having control of your thoughts but add the N to that and then you can't even control your life because you are falling asleep all the time.

I have had every single doctor tell me that I need to ask for accommodations at work to go take a nap. I can't do this. I have read every disability law and clause that is out there. The wording is, "reasonable accommodations". In my line of work it is NOT reasonable for me to leave my desk and go take a 15-20 minute nap. The only thing I have been able to reasonably request is that if I am having a really bad day or time of things that I can get up and go walk around for about 5 minutes. Other than that I have to go home.

I have no FMLA and have already been off work since March 8th, I am going back Monday I hope.

I have had to deal with and face a lot of difficult times in my life but this is the absolute HARDEST thing I have ever had to deal with and live through.

I wish you all the best and PLEASE keep in touch and let me know if you already have accommodations or if you asked for them. I know it's hard to face that you have something as severe as N but you have to face it and try and go beyond it. By that I mean don't let it slay you, you slay it. Ask for accommodations, take that quick nap if that's what is going to help. I have to fight it at my job, and it's the hardest thing, I have NEVER won. I might have postponed an attack a few minutes but never slayed it completely.

Take Care