Posted 12 January 2011 - 11:17 PM
Posted 14 January 2011 - 09:17 PM
Posted 17 January 2011 - 01:58 AM
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.
Posted 26 January 2011 - 06:52 AM
Posted 26 January 2011 - 11:37 AM
Posted 27 January 2011 - 07:18 AM
I also think that if enough people in the valley check in here, they'll say hi too.
Posted 28 January 2011 - 07:11 AM
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?
Posted 30 January 2011 - 12:54 AM
Posted 05 February 2011 - 06:03 AM
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.
Posted 06 February 2011 - 01:05 PM
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.
Posted 07 February 2011 - 09:17 PM
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.
Posted 12 February 2011 - 09:01 AM
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.
Posted 26 June 2011 - 03:29 PM
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
Posted 11 July 2011 - 12:05 AM
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.