13 replies to this topic

[Big Dog]

Love to know if there are any others around me. I would love the chance to talk face to face with a human being without seeing the WTF look behind thier eyes. Gimme a shout when you wake up!

[Gabby]

I work in Phx. Just knowing someone else is within 100 miles makes you feel better. I got a firm diagnosis last week. I came to this site almost a year ago because the doctor suspected I had N and I had no idea what it was. Took a long time to get a definate answer. I came back to get some ideas for coping skills and ideas that will make things flow a little more smoothly.

[Big Dog]

I work in Phx. Just knowing someone else is within 100 miles makes you feel better. I got a firm diagnosis last week. I came to this site almost a year ago because the doctor suspected I had N and I had no idea what it was. Took a long time to get a definate answer. I came back to get some ideas for coping skills and ideas that will make things flow a little more smoothly.

I'm so glad to see a reply to this, funny how proximity matters even on a computer. I'm up in Anthem, but I used to work in Phoenix until I had to stop driving. Glad you came back to the site too, I think we're all here for that same reason.

[Gabby]

It's been crazy at work and I think bosses saw seriously unfocused I can get yesterday. Was kind of tough. I keep hoping that more of us in Phx will pipe up. Maybe it's the sunshine overdose we get in this area that keeps N away from this part of the world? Not so much? LOL I know another person who works in Phx. I haven't e-mailed her in over a year. I will try to contact her. Then there will be three. I haven't had enough time to reply lately but wanted you to know that I was still here. Dr has to change my meds cause insurance won't cover dosage of what I take. I read about the insurance wars others have. I'll let you know how this battle goes. It's all good though. Go have a walk while the weather feels good.

[Big Dog]

Hey Gabby, good to hear from you. You reminded me of one of my worst days at work when giving a presentation to a prospect started to slurr and fragment my sentences. I had to go to the pres. of the company that same day and tell him that if he gets any calls questioning my performance that he could see I'm not drunk or under the influence of any substance that would cause that to happen, just part of what I have. I had lots of supsport there, but that was just humiliating. How upfront are you with people you work with? I've been an open book for quite a while now and so I just tell everybody. For some, that was the last time I talked them. Others talked to me slower. I still don't understand that logic but what I don't know can barely fit in the Grand Canyon! Let's keep bangin the drums, I bet we find more than three of us in the Phoenix area.

Big Dog

[Gabby]

I'm pretty open about it at work. I don't run, screaming it down the halls to everyone , but since we work in cubes, there are some people that just need to know. One of my employees sent me a pic on my phone. When I opened the pic, it was me sleeping. We all laughed, but that's when I knew it was time to find out what was going on and I went to the doctor. So of course, she was the first person I told. Once we started working on the diagnosis, I told my staff, my bosses, and most important, I went to HR. I had to do that so if someone reported that I was sleeping on the job, I was protected. But I also went for advice. I get mixed reactions too. The hardest ones to put up with are the ones that want to make sure they don't say anything inappropriate. The 'tippy-toers'. They are just uncomfortable with the situation. We have pretty strict policies because it is a large company. There are those slackers that go to HR to scream discrimination, of some sort, almost daily. So management has to watch closely what they say to employees. Since no one is familiar with N, they have no idea what is appropriate to say. Usually I feel sorry for those people and explain that in our house and among our friends, we keep it light hearted. I tell them that it's not open season to bash on me, but if I crack a joke about the afternoons nap session, then they can laugh. I tell them that if they say anything wrong, I'll let them know, but it's better than avoiding me. I have one boss who took my suggestion to heart. She is never rude about it. I know that she may not understand it, but accepts it as part of our office enviroment, and we just move on. At our house we laugh about everything. Life would really suck if we couldn't find the humor in the crap that happens to each of us every day. Oh it is REALLY HARD to deal with it at work, but I've built a support system, and we are doing okay.

I also think that if enough people in the valley check in here, they'll say hi too.

[Gabby]

Hey Big Dog,
As I go through posts I see input that you have given. You are pretty level headed and calm about stuff. How did you find out so much about N? All of the fact sheets on different sites say about the same thing. And going to the medication official web sites really doesn't help. Where can I get more info? I have no idea if a bad a bad day has something to do with my N or if I'm just getting old. LOL Really. Age plays a role in everyone. Do you have other good places that I can research?
Thanx,
Gabby

[Big Dog]

Well thank you for the kind words, but if you could hear all that goes on between my ears; calm and level headed my not be the first words that come to mind! Anyway, my approach to this was really brought on my reluctance to cope with it. I'm not sure when I should have been diagnosed but I can tell you where the arc started the down trend. Early in my professional career I had some real difficulties, but by the time I was 29 I was making good money and it would only get better. I had strong office support, a good name, great market, more resources than I could burn, and a mentor who's credentials and integrity are beyond question. Then gradually, the only way I've been able to describe it is to say things just slowed down for me. One persons hour was my morning and afternoon, things weren't sticking with me, the fog was settled in. I knew something was wrong and after taking my symptoms to the doc his thought was "maybe an aneurysm, but sounds like a tumor". The tests came back negitive and I never bothered to ask what the symptoms could have been caused by. At that point I was ok with just not having a brain tumor. Another simliar occurance happened a few years later with the same results. By the time we moved here there was clearly a problem but putting a finger on it was made difficult by a back injury so I was already laying down a lot. It was that back injury that sent me to the neurologist that had a respectable background in N. And he flat out told me that's what I had, which obviously he was right but I thought telling a doc your back hurt and leaving with basically a narcolepsy diagnosis just didn't feel right. Plus my back really hurt, and my impression of narcolepsy was the same as anyone else that doesn't know what it is. But it was enough for me to at least google it and it snowballed from there. I think I made some lucky decisions early on because I went more to medical journals and published articles rather than first person accounts to avoid bias and influence. Then as things got worse I started taking narcolepsy personally like it had some agenda and I took more of a "know your enemy" approach. That's when I really got a good look at how little new information there is on how to even diagnose narcolepsy let alone treat it. So I took a few more steps back and learned a little bit about the endocrine system, the hypothalamus, blood brain barrier, receptors, and so on with the hope of mitigating my symptoms because at this point they were quite pronounced. That lead to some research on various neuropeptides. I can elaborate more on that if you like but that would have to be via PM or something. One great side effect is when I get knee deep in this stuff it makes me feel like an active participant in the fight. I used to believe that no one single thing could beat me, I used to say it all the time. Now my mantra is closer to "you may beat me, but I'm gonna bust you in the chops for it". The sad truth is, its up to us to educate the doctors in most cases, so we may as well get educated along the way. So, I guess after all that I didn't really answer your question about a good research site but I'm sure I can save you some time there. If there is a paticular subject you're interested in let me know and I'll at least be able to get you in the right direction. Hope you're havin a good weekend!

BD

[Gabby]

Thanx BD. Even that information helped a lot. Especially about educating doctors. If mine is willing to learn with me then it's all good. I've been to a few goofballs and this is the one who said he would stick with it until he found something. And then he would still continue to look. That was honest enough for me. I don't cherrish the thought of trying to research a doctor to find the best in the west. That takes time and money. Two things that are becoming more limited these days. The insurance company decided I needed to try something cheaper. They put me on Adderall. (Oh, by the way, can you tell that I suck at spelling?) The first two things on the information sheet that comes with it are that there is a risk of heart problems and can cause mental problems, especially if you're diagnosed with them. Well yeehaw! Sign me up. So I went out here to look up bipolar and adderall. I'm not finding any negatives. I need to try it so that I can report if it works or not. I only start new meds on the weekend so if I have a weird side affect, I'm not at work. So I'll start it today.

We are going to the hockey game. If you and your wife are headed out there, you can wave to me. I'll be the lady in the coyotes jersey.

[Big Dog]

Thanx BD. Even that information helped a lot. Especially about educating doctors. If mine is willing to learn with me then it's all good. I've been to a few goofballs and this is the one who said he would stick with it until he found something. And then he would still continue to look. That was honest enough for me. I don't cherrish the thought of trying to research a doctor to find the best in the west. That takes time and money. Two things that are becoming more limited these days. The insurance company decided I needed to try something cheaper. They put me on Adderall. (Oh, by the way, can you tell that I suck at spelling?) The first two things on the information sheet that comes with it are that there is a risk of heart problems and can cause mental problems, especially if you're diagnosed with them. Well yeehaw! Sign me up. So I went out here to look up bipolar and adderall. I'm not finding any negatives. I need to try it so that I can report if it works or not. I only start new meds on the weekend so if I have a weird side affect, I'm not at work. So I'll start it today.

We are going to the hockey game. If you and your wife are headed out there, you can wave to me. I'll be the lady in the coyotes jersey.

Wait, were you the one cheering???? I totally saw you, but you didn't wave back. Spent the entire game trying to get your attention then when I was ready to give up the buzzer sounded and we went home. Sounds like the doc you're working with now might work for you, but if you would like, I can send you the name of my GP and neurologist just in case. My GP is unreal, he has this crazy idea of treating the patient as a person, rather than someone who talks too much. He's very compassionate, and he is always open to suggestions on treatment. You'll have to wait in the lobby for a while, but to me thats worth it. My neurologist on the other hand has about the worst bedside mannor I've ever seen. It's actually funny because he borders on a grumpy sit-com character but he is very good, and well respected among his peers. Actually he's more like one of those two grumpy old men in the balcony from the muppets, sans the laughing.
How is the Adderall working? I've been on Provigil and Adderall for almost a year now and it's helped. I don't think I have any pre-existing mental problems but some of the voices in my head are in disagreement on this issue.
Something I just remembered, if you were taking a med that the insurance co. doesn't want to pay for, your doc can send them a prior auth stating that you tried two other medications in an attempt to replace the one in question and were non-responsive to both. That makes it very hard for them to blow you off.

[Gabby]

Yep. That was me. Dang, sorry I missed you. I was too busy watching the cute little girl in front of us, right up until she turned into a little monster. But she was still really cute. I got a new woobie though. It was great that we won. I wouldn't call it a butt kicking, but at least we moved up in the standings. If you were still waving during the third period then I would have missed it. I 'hit my wall' as we call it and slept through a lot of the that. My hubby and sister tap me awake and it's all good. Dollar soda and HOTDOGS. I don't even want people to tell me what is in a hotdog. I love 'em. But they didn't have the relish and onions set up. I pile on the onions. I could eat onions by the spoonful. But on a hotdog? Now that's just heaven. What's up with the other team knocking our guy over the top of their goalie and the ref calling us for delay of game? Really? HA! We still won.

I'm doing good on th adderall. Beleive it or not I kind of like it. My concentration is so much better. I miss that part. The bad part is that it only lasts a max of 4 or 5 hours and then I'm out again. I'm on generic 10 mg. twice a day. I cheated last night and took 1/2 a Nuvigil because I had so much work to do before I went to work today. My appointment with my doctor is not until March 8th. I'll let him know what I think. It's that decision between concentration or being awake. Hmmm, concidering that there is so much to do at work, that's a hard choice. I would totally ask for your dr's name but I am all the way in Mesa. My Neurologist is in Tempe. The girl who gets the pre-auths is great. She was going to give me her e-mail address so that I could send the dr. questions as I think of them. She didn't get it to me though. She might be a little worried that I'll blow up her box with a ton of questions. And I might. I have a lot. I don't see my GP often. And when I do, I never know if he is going to be there or if they are going to put me in with another doctor. I actually see a pain management specailist because I'm old and have arthritis. LOL He is the one that refered me to the new neurologist. He didn't know him personally but had gotten his name from another doctor that he knows. I told him that was a good call because I really like what the new guy has done. He types into the computer a lot but he looks at you while he's doing it too. I know he's listening because he asks me questions about what I tell him. I don't want to offend him by asking him how much he knows about N or how many patients he's had. But I would like to know. When I go next time I'll see if i can get another dosage added, but at the same level. I feel decently normal on 10 mg and don't want to go up. I would like to take it more often though. I know the benefits administrator at work and she hooked me up with a rep for the Rx part of our insurance company. I told them that I was just looking for some information into the insurance companies guidelines so that we come to a workable solution. I am very lucky. I know I am. And I think my stars for that. Have you taken Nuvigil and how does that differ from the provigil? My insurance company will cover provigil.

The next game you go to, let us know. Have a good week.

Gabby

[Gabby]

Aaaarrrgggg. Talked to the liaison for the insurance company. The only thing the insurance company has in my file under diagnosis is 'extremely exhausted'. The ew doctor has not given them the results of my tests or the N diagnosis. So they keep denying the pre-auth. And the medical review consisted of the 'on staff pharmisist' reading the medication fact sheet from the FDA. He read the recommended normal dosage for fatigue. Hmmm... LOL But I have a liaison who responds to phone calls and emails. That's the best news. Baby steps, but at least we are getting info and I'm not left in the dark. Gonna give the Dr's office a call on Monday.

I am going to try your aproach and research more medical information besides just what I have found. I'm not an idiot by any means, but English was not my strongest subject. My brain works with numbers and I like puzzles. Once the $5.00 words start and I start concentrating, I sleep. I haven't read anything really informational in about 4 years. It's nice to have grandkids because we can finish a story right before our nap. My grandson thinks I'm the greatest because NaNa makes him take a nap but she will lay down with him and take one also. I read entertaining things now because it's easier to pick up where you left off. So I'm excited to do the research.

[Young_confused]

Hey so I just got diagnosed. I am paying for the nuvigil out of pocket and it is killing my finances but the provigil does not work for me at all and the other I cannot take do to my seizures. I am only 20yrs old and I know from reading your posts that you guys are at lest a little bit older and that I am lucky to be diagnosed so young... It is still hard for me to get my body moving if I dont have any plans. I at this point do not know what I am going to do with my life because all I am interested in most of the time is sleep. I love talking to people to but I have no idea how to make a career out of that due to my not great spelling and sentence structure. I also have bouts of depression. You guys have any ideas for me.... My seizures are not horrible just usually in my face when I am awake and I know I am going to have them. But I forget my medication a lot. (I have to take it at night and I am just so sleepy sometimes). My narcolepy is not complicated my catalepy or anything like that. My body just tells me to sleep all day and if I let it I will sleep an average of 18hrs a day. I have a visit with a new doc scheduled because my old one is not helping me much at all with explaining or my meds or my insurance...
Any advise, thoughts or anything is welcome. If you guys are up for it I would like to meet you. Just having someone to talk to about it and someone that understood that I am not just lazy. That it is not because of drugs. That I am not ignoring my alarm in the morning I am just to sleepy to hear it.... (I have been thinking about getting a alarm clock or people who cannot hear I shakes your bed instead of making noise.)
I guess another thing I do a lot is doing things in my sleep. I will sleepwalk though most of some days with even my bf not knowing it. (we went the the renaissance festival and I have almost no memorise of it. They tell me I was complaining of being really tiered but they had no idea that I was actually asleep) This is the only time I know of for sure but there are probably more days that are just not as memorable. I have no idea about the relation to my seizures and narcolepsy. I have had the seizures seens I was 11 or so at times controlled at other times not. I guess I am just a confused and mostly not understood kid.
I went to the Emergency room because I knew I was getting sick what was probably the flu but with dehydration also. The doctor that saw me did not talk about why I came in all he would talk about was the fact that some of my seizure meds (the ones I take when I know I am about to have a seizure to prevent it) somewhat counteract my narcolepsy drugs. He would not understand that I would rather be sleeping then have a seizure... He was also telling me that my seizures where catalepy (though he did not know the word catalepy) but I have had my seizures seens I was 11 and they are my face twitching and being awake. This is all after he asked if I truely did have seizures or I just thought I did and that narcolepy was so rare that I could not possibly have it.... after all this I asked him if my seizure my narcolepy or my medications would be the cause of why I came in. he said they where not!!! I am sick of being treated like someone who is just after attention. All I want is to live the life I dreamed which is now impossible or at least a lot of it. (I wanted to be a polite and fly around seeing new places) after the seizures I wanted to help out in other contries exploring 3ed worlds and doing what I could to improve there lives though education or what ever else I could help them with (but taking medications like I have to no organisation wanted to risk taking me) After that I wanted to become a rowing athlete with all my heart. I am a great rower and did very well but no college could have me row due to my grades being low due to me sleeping though class and not doing hw because I was sleeping after I got out of rowing practice tell I had school next. (Everyone told me I was lazy and must be doing a lot of drugs or I was just stupid or whatever) (I was not diagnosed with narcolepsy) I have spent 2 years in college un-diagnosed so my gpa hurts there too. At this point I dont see any carrers I like or anything I want to do that I am allowed or even capable of doing.
So please talk to me. Give me ideas as to what to do with my life. or at least read this though. All people I know are telling me is thank god your not dyeing. But in my eyes I would rather have lived this 20yrs of my life without disabilities and restrictions than live to a ripe old age with what I have. Especially because each seizure I have gets worse. I loose more time my memory has a harder time holding on to things. I am happy to have a place to share this with everyone. I guess I want you all to know that even though I appear extremely depressed which I am. It was not even I month ago that I loved my life more than anyone else I know. I am happy then not. Thanks for reading

[Gabby]

Hi Young,

I don't know that I can help you very much because I am having a rough time accepting everything right now. A couple of months ago I looked back at all I had posted and thought how stupid I must have sounded. I was so excited when I was first told what was happening to me because I actually had an answer. Then the same doctor came back and told me it wasn't N and that there was nothing he could do. I stopped visiting this site because I felt like an intruder. The second doctor beleived that I had N and promised to do all that he could to find out for sure. The tests confirmed it. So I felt like it was okay to come back here again. Silly me. And I tried to be optomistic and goofy which probably made my posts seem unimportant. But over the last few months things have gone down hill quick. I got a lot of useful information from BD here in the Phoenix topic. He has studied a lot. I don't understand half of what I read in medical journals though and have to reread them. By that time, I start having sleep attacks. I don't have cataplexy so I consider myself lucky and like you, I find that even this second doctor doesn't tell me much. I just can't beleive who I used to be and who I am today are the same person. So I'm still on the search for answers. Just when I think I understand what is happening to me, something changes. I have raised my children and was set in a career that I could have retired from in about 12 years. But they are telling me that the stress and pressure from that is what brought my symptoms on so severe. The people I thought understood and were excepting of it, weren't. And even my husband has a lot of days where he loses patience with me.

I don't understand everything that you are going through. But knowing that someone read your post makes you feel really good inside. I have no answers for you either. But you can bet that I will ask the doctors that I see if there is somewhere that you can go to get help with your med expenses. I'm very fortunate to have insurance, but even they decline things and won't pay for the full dosage my doctor would like me to take. So we are trying other meds. I can't imagine having to pay out of pocket. As for your career.... whatever you look for, make sure it holds your interest. Because I like to craft, I can stay awake a lot longer if I'm learning a new technique or putting my ideas on to a page. But I no longer have a favorite tv show becuase I nod off and I warned my family against getting me a Kindel for my bday because i don't know the last time I could read more than half a page of a book. So throughout the next couple of weeks, maybe make a note of what you do remember doing. If you see a pattern, maybe that's what you were meant to do. But I don't know for sure. I'm not a counselor. And I know next to nothing about seizures or cataplexy. That might not work with those. But if nothing else, keep me up to date on what you find out.


Gabby