hi everyone it me again

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scoobymom97
Posts: 5
Joined: Sun May 23, 2004 1:32 am

hi everyone it me again

Post by scoobymom97 »

hi everyone :D i just want to say thank you to everyone who posted replys to my post! to let everyone know that i also got narcolepsy along with the rls, asthma, c-tunnel and allergies and im only 25 aaaaahhhh :shock: i feel like cry some days! dose any one in here also have narcolepsy??? well i got to go bye have a good day holly :D

jumpyowl
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Location: Yantis, TX
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How about cataplexy?

Post by jumpyowl »

Hi, Holly: now you are bringing up narcolepsy! Can you supply a bit information about yourself in connection with that disorder? How was it diagnosed? Have you ever had a polysomnograph done on you?

You probably know that narcolepsy can be severe enough to turn into cathaplexy. This is when one just collapses without much warning. Is yours ever that severe? :shock:

There is actually a medication for that. An orphan drug which assures uninterrupted delta phase sleep during the night if taken twice nightly.

If I may give you an advice to help you get more out of posting?. :oops: Try to keep stuff about your health problems in one thread and keep posting there. :? It will be better for you having it all in one place and will make it possible to have a meaningful exchange of ideas, develop dialogue, get focused on problems and their solution. It is especially a bad idea to answer somebody's post to you in another thread as it breaks the line of communication. :? :?
Jumpy Owl

Romy

I have narcolepsy and RLS

Post by Romy »

I was first diagnosed with RLS then Narcolepsy (I have cataplexy, and all the other symptoms) I am on Xyrem-the new drug from orphan. But when I started the xyrem they took me off of all my rls drugs, I was on neurontin, mirapex, oxycontin and ambien. I had had horrible horrible struggles with RLS and this combination helped control it well for years. Then to go on the Xyrem I went off of all those(last oct/nov), and I thought I was fine, but the RLS has been creeping back the whole time and I really didn't reognize it (I think I was in denial) But now I am back on all the old RLS drugs, except ambien, but only for the last 3 nights, and they have been ok, but not great, still feel the RLS,

jumpyowl
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Joined: Sat Mar 27, 2004 2:59 pm
Location: Yantis, TX
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Hello, Romy:

Post by jumpyowl »

You wrote:
I was first diagnosed with RLS then Narcolepsy (I have cataplexy, and all the other symptoms) I am on Xyrem-the new drug from Orphan. But when I started the xyrem they took me off of all my rls drugs, I was on neurontin, mirapex, oxycontin and ambien. I had had horrible horrible struggles with RLS and this combination helped control it well for years. Then to go on the Xyrem I went off of all those(last oct/nov), and I thought I was fine, but the RLS has been creeping back the whole time and I really didn't recognize it (I think I was in denial)


Now your case is for the book. I am well aware of Xyrem and the company making it available. As you may have heard there is now an off label use for it in patients with severe fibromyalgia.

I made a pain doctor acquainted with Xyrem and its use and now he is using it with some of his patients. He and I discussed what drugs can be retained with the use of Xyrem. He only wanted to be sure that his patients do not get into respiratory difficulties so he usually orders a sleep study for ruling out sleep apnea.

Due to the fact that Xyrem is quite fast acting and has a short half life in the body, we found that many medications can still be retained with some minor change in scheduling. I recall a patient who had been taking 12 medications, eight out of them had an effect on the central nervous system. This patient, for example, was allowed to use all of them with the rescheduling of one (morphine sulphate).

My point is that taking you off all the medication was probably unnecessary and not following up on your resulting problems seems cruel.

I can understand why doctors err on the side of caution. Its their skin and your discomfort. My point is that it is worth negotiating with the doctors and one should definitely letting him/her know the discomfort and pain one has to endure due to some medication change.

But now I am back on all the old RLS drugs, except ambien, but only for the last 3 nights, and they have been ok, but not great, still feel the RLS.


You may have to work out another regimen if you are still on Xyrem. And figure out which works the best for you. Your RLS may have changed. Mirapex, Neurontin, oxycontin, and ambien seem to me a bit of an overkill. Especially the first two, you may only need one or the other. :?

Did Xyrem help your cataplexy?

It is the Xyrem I am referring to in my previous post. It is a fantastic drug to correct sleep abnormalities, has few side effects. It is too bad that it acquired such a bad reputation as a date rape drug. I think it was prohibited in the US in the nineties and still is prohibited in the United Kingdom. :(

Please, visit on the General Topics Forum, the topic ORP, an please add your comment. When I said it was for the book I meant it. There is someone else on the Discussion Board also with possible Narcolepsy and RLS/PLMD.
Jumpy Owl

Romes
Posts: 5
Joined: Fri Jul 16, 2004 4:25 pm
Location: New Jersey

reply to Jumpyowl--xyrem and narcolepsy and RLS

Post by Romes »

Oh one correction, I did stay on mirapex, but I reduced the amount myself because I felt so good, so I was taking .5 mg at bedtime, whereas before I'd been taking 1.25mg at bedtime,and .75 mg 4 times during the day.

I don't know if my RLS has changed, I know that I had previously, years ago, had a very bad case, which this previous regimine controlled for years. When I went off of all the drugs it was torture, but when I started the xyrem it was amazing, for the first time I really slept (narcolptics don't get any slow wave sleep, and have many abnormal rem onsets in sleep, etc). And then my whole life changed in the months after xyrem, whereas before I couldn't work or drive, now I could. It didn't just help my cataplexy it gor rid of the completly debilitating sleepiness of narcolepsy. Yes my RLS may have changed, but because I am now facing a situation where I could loose my livilhood, my dr said ok, lets just go back to the old regimne. The thing is it is helping the rls, and I am getting to seep, as I said before, but now I'm tired today, and have been for the last 3 days, but I think I'm not getting quality sleep, so tonight I will try backing off the xyrem...I'm on the top dose, and see i that's better . .the key is I have to control the rls enough to let the xyrem work so I can get good quality sleep. Also its not just the last 3 days that I've been more tired, but latley more and more--

One thing I think my RLS has been coming back at me for a long long time and through denial, I ignored it, but it was definitly effecting my sleep.

As to the Xyrem, yes it helped my cataplexy, in fact it totally went away, which was an amazing thing. I didn't even realize how much cataplexy I had until after I had xyrem, and felt what normal was.

Yes Xyrem is GHB which was the date rape drug. And it is still prohibited as GHB in the USA, but as Xyrem , chemical name sodium oxybate, it is approved. They have a very special distribution system for it, ie one central pharmacy which dr's fax precriptions to ,and then xyrem gets mailed out only to each individual.

And I think I heard the Xyrem has been approved for use in th European Union, so maybe it could be available is the UK?

Romes
Posts: 5
Joined: Fri Jul 16, 2004 4:25 pm
Location: New Jersey

Post by Romes »

I amd the Romy who wrote before as a guest

jumpyowl
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Joined: Sat Mar 27, 2004 2:59 pm
Location: Yantis, TX
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Welcome again, Romes!

Post by jumpyowl »

You replied too fast while I attempted to transplant this thread to General Topics Forum under the title "RLS/PLMD an Narcolepsy/Cataplexy". 8)

I answered your long and interesting note there. I hope you will find my comments useful.

Hooray for Xyrem! :)
Jumpy Owl

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