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#1 JuliaMeagen

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Posted 14 October 2012 - 05:10 PM

Hello, I'm new to this site. My name is Meagen. I've been diagnosed with IH by my GP and N w/ Cat. by my Neurologist (my most recent visit)
It has been a struggle of mine for the past few years and to finally get a name on it is somewhat of a relief.
But i am not taking to well to the medications i have tried. I was first prescribed adderall 10mg...didnt help one bit.
she bumped me up to 20mg. also didnt help. so i decided to take both of them throught the day.
It made somewhat of a difference but not enough. i was taking them late in the day around 12pm so that i wouldnt fall asleep on my 45 min drive home from work everyday. and even then i barley survived my drives home. adderall made me sick every day and i noticed i was very aggressive and agitated all the time. i hated the way i felt and acted while using it. i tried it for about 3 months and had no improvement.

So, my neurologist gave me samples of Nuvigil, which i was excited to try because i heard good things about it. Even worse :(
i felt even more sick now than i did before and it didnt keep me awake at all. i didnt eat for days, and when i did eat, i'd lose my appetite after the first bite.
I also started feeling severely depressed. i tried looking it up to see if anyone else had this side effect but it didnt seem to be common. I probably cried every single day while i was on it and had terrible suicidal thoughts because i was just so tired of dealing with this issue and not getting anywhere.
I stopped taking Nuvigil cause it made me a terrible person and iv been off of everything for about 2 weeks.

sad to say iv been playing phone tag with my dr to try something else but i havnt had any luck with a response yet. im doing my best with vitamins and i want to exercise to try to get my endurance to do things up, but i cant. i fall asleep and feel almost paralyzed. im afraid i am going to gain all the weight that i lost back and just become terribly out of shape because i cant seem to focus on doing anything.

i just recieved my package of Xyrem. I'm going to start that tonight and hopefully see some improvement in my day.

but i'd still like some advice on what i can do to cope and what kind of lifestyle changes i should make to help me out.

Please and Thank you,
Meagen -_-

#2 Hank

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Posted 14 October 2012 - 05:23 PM

Hello, I'm new to this site. My name is Meagen. I've been diagnosed with IH by my GP and N w/ Cat. by my Neurologist (my most recent visit)
It has been a struggle of mine for the past few years and to finally get a name on it is somewhat of a relief.
But i am not taking to well to the medications i have tried. I was first prescribed adderall 10mg...didnt help one bit.
she bumped me up to 20mg. also didnt help. so i decided to take both of them throught the day.
It made somewhat of a difference but not enough. i was taking them late in the day around 12pm so that i wouldnt fall asleep on my 45 min drive home from work everyday. and even then i barley survived my drives home. adderall made me sick every day and i noticed i was very aggressive and agitated all the time. i hated the way i felt and acted while using it. i tried it for about 3 months and had no improvement.

So, my neurologist gave me samples of Nuvigil, which i was excited to try because i heard good things about it. Even worse :(
i felt even more sick now than i did before and it didnt keep me awake at all. i didnt eat for days, and when i did eat, i'd lose my appetite after the first bite.
I also started feeling severely depressed. i tried looking it up to see if anyone else had this side effect but it didnt seem to be common. I probably cried every single day while i was on it and had terrible suicidal thoughts because i was just so tired of dealing with this issue and not getting anywhere.
I stopped taking Nuvigil cause it made me a terrible person and iv been off of everything for about 2 weeks.

sad to say iv been playing phone tag with my dr to try something else but i havnt had any luck with a response yet. im doing my best with vitamins and i want to exercise to try to get my endurance to do things up, but i cant. i fall asleep and feel almost paralyzed. im afraid i am going to gain all the weight that i lost back and just become terribly out of shape because i cant seem to focus on doing anything.

i just recieved my package of Xyrem. I'm going to start that tonight and hopefully see some improvement in my day.

but i'd still like some advice on what i can do to cope and what kind of lifestyle changes i should make to help me out.

Please and Thank you,
Meagen -_-


Xyrem takes a while as you slowly increase the doses. Check some of the Xyrem posts to learn more. I have been on Xyrem since July and it has made a huge difference. Hang in there for a few more weeks and you will likely start seeing a difference. I have been able to take a break from Adderall this weekend and last- and just relax without crashing. You're very close to getting some relief.

#3 DeathRabbit

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Posted 15 October 2012 - 09:19 AM

Hello, I'm new to this site. My name is Meagen. I've been diagnosed with IH by my GP and N w/ Cat. by my Neurologist (my most recent visit)
It has been a struggle of mine for the past few years and to finally get a name on it is somewhat of a relief.
But i am not taking to well to the medications i have tried. I was first prescribed adderall 10mg...didnt help one bit.
she bumped me up to 20mg. also didnt help. so i decided to take both of them throught the day.
It made somewhat of a difference but not enough. i was taking them late in the day around 12pm so that i wouldnt fall asleep on my 45 min drive home from work everyday. and even then i barley survived my drives home. adderall made me sick every day and i noticed i was very aggressive and agitated all the time. i hated the way i felt and acted while using it. i tried it for about 3 months and had no improvement.

So, my neurologist gave me samples of Nuvigil, which i was excited to try because i heard good things about it. Even worse :(
i felt even more sick now than i did before and it didnt keep me awake at all. i didnt eat for days, and when i did eat, i'd lose my appetite after the first bite.
I also started feeling severely depressed. i tried looking it up to see if anyone else had this side effect but it didnt seem to be common. I probably cried every single day while i was on it and had terrible suicidal thoughts because i was just so tired of dealing with this issue and not getting anywhere.
I stopped taking Nuvigil cause it made me a terrible person and iv been off of everything for about 2 weeks.

sad to say iv been playing phone tag with my dr to try something else but i havnt had any luck with a response yet. im doing my best with vitamins and i want to exercise to try to get my endurance to do things up, but i cant. i fall asleep and feel almost paralyzed. im afraid i am going to gain all the weight that i lost back and just become terribly out of shape because i cant seem to focus on doing anything.

i just recieved my package of Xyrem. I'm going to start that tonight and hopefully see some improvement in my day.

but i'd still like some advice on what i can do to cope and what kind of lifestyle changes i should make to help me out.

Please and Thank you,
Meagen -_-

How much do you sleep each night? I've found for myself that there is a window that helps me out. Basically, I seem to function best between 8-8.5 hrs of sleep. Anymore, and I feel really really sick and dysautonomic for the rest of the day. Any less and I am stumbling from fatigue. You might wish to keep a diary to see what works best for you. Also, do you have a sleep partner? If so, you might want to try sleeping in separate beds, if they will go for that. I know it was at first a tad bit hurtful for my gf, but now that she's known me for a while and seen my condition in action, she insists we sleep separately so I can get the best rest possible. Also, make sure you don't have any pets in the room. I used to sleep with my dog in the room until I realized he was partially rousing me multiple times a night, basically any time he got up to sniff around. Since we go into REM really quickly and it takes us longer to get to slow wave sleep, we narcs have to maximize our chances by getting long tracks of undisrupted sleep.

#4 Megssosleepy

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Posted 15 October 2012 - 02:30 PM

I would defiantly suggest trying so other meds. I have a very hard time with most of the stimulants myself and have to stay at a very low dose... needless to say a low dose barely keeps me awake while driving! I have found from reading some post on here the best way to stay awake behind the wheel is to raise your core temp and decrease the temp of your hands and feet. This can be done by wearing flip-flops and keeping the AC on your feet and turning heated seats on or drinking something warm... I found this to be very very helpful!

I am hoping that now that I have been on Xyrem for almost 3 months that Soon I wont need to take a stimulant at all. I am going to be experimenting with some natural remedies in the months to come. If I find anything that helps I will be sure to post.

There are a lot of helpful post on this site about Xyrem and day to day stuff... def. take some time to read and I am sure you will find lots of helpful information.

Good luck, and don't worry you have more options out there... don't stick with any drug that makes you feel like crap... Ritalin did that to me... when my doc suggested I try it again... I decided it was time for a new doc!

#5 JuliaMeagen

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Posted 21 October 2012 - 08:11 PM

I would defiantly suggest trying so other meds. I have a very hard time with most of the stimulants myself and have to stay at a very low dose... needless to say a low dose barely keeps me awake while driving! I have found from reading some post on here the best way to stay awake behind the wheel is to raise your core temp and decrease the temp of your hands and feet. This can be done by wearing flip-flops and keeping the AC on your feet and turning heated seats on or drinking something warm... I found this to be very very helpful!

I am hoping that now that I have been on Xyrem for almost 3 months that Soon I wont need to take a stimulant at all. I am going to be experimenting with some natural remedies in the months to come. If I find anything that helps I will be sure to post.

There are a lot of helpful post on this site about Xyrem and day to day stuff... def. take some time to read and I am sure you will find lots of helpful information.

Good luck, and don't worry you have more options out there... don't stick with any drug that makes you feel like crap... Ritalin did that to me... when my doc suggested I try it again... I decided it was time for a new doc!



wow. i will def try the temperature thing, cause driving can be so scary. a natural remedy would be great aswell. i hate not beingable to do activities. thanks for the response.

#6 JuliaMeagen

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Posted 21 October 2012 - 08:15 PM

How much do you sleep each night? I've found for myself that there is a window that helps me out. Basically, I seem to function best between 8-8.5 hrs of sleep. Anymore, and I feel really really sick and dysautonomic for the rest of the day. Any less and I am stumbling from fatigue. You might wish to keep a diary to see what works best for you. Also, do you have a sleep partner? If so, you might want to try sleeping in separate beds, if they will go for that. I know it was at first a tad bit hurtful for my gf, but now that she's known me for a while and seen my condition in action, she insists we sleep separately so I can get the best rest possible. Also, make sure you don't have any pets in the room. I used to sleep with my dog in the room until I realized he was partially rousing me multiple times a night, basically any time he got up to sniff around. Since we go into REM really quickly and it takes us longer to get to slow wave sleep, we narcs have to maximize our chances by getting long tracks of undisrupted sleep.


i sleep about 7 to 8 hours depending on the day. but iv found that no matter the amount of sleep i never feel well rested. i do have a sleep partner but before he moved in my symptoms were just as bad and i havnt really noticed a difference since he moved in. plus we keep to eachothers own side and dont really wake eachother up. i do sleep with a pet and i'll try having her sleep outside the room. but iv never had an issue with that. im a sleeper...i sleep through everything. she could probly crawl on my back and i wouldnt wake up. but thank you for the tips. i'll try them out and keep note of any changes :)

#7 DeathRabbit

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Posted 21 October 2012 - 10:29 PM

i sleep about 7 to 8 hours depending on the day. but iv found that no matter the amount of sleep i never feel well rested. i do have a sleep partner but before he moved in my symptoms were just as bad and i havnt really noticed a difference since he moved in. plus we keep to eachothers own side and dont really wake eachother up. i do sleep with a pet and i'll try having her sleep outside the room. but iv never had an issue with that. im a sleeper...i sleep through everything. she could probly crawl on my back and i wouldnt wake up. but thank you for the tips. i'll try them out and keep note of any changes :)


Yea, I would definitely get the pet out of the bed. A lot of times, you can get roused by stuff like them moving around and not even know it. We narcoleptics have a bad habit of getting knocked out delta wave sleep into alpha and REM. I'm pretty sure it happens to me, because on the nights I sleep with a white noise generator, I feel infinitely better, despite having woken up the same amount with or without it. Good luck.:)