XYREM saved my life

Discussion in 'Fibromyalgia Main Forum' started by julieisfree05, Apr 19, 2006.

  1. julieisfree05

    julieisfree05 New Member

    Hi Everyone,

    I've been getting the newsletter forever, but I've never posted to the message board here.

    I developed FM/CFIDS and Multiple Chemical Sensitivities in August 1991 after a toxic exposure in the Navy Lab where I worked. Within a few months of the exposure, I was totally disabled by pain, fatigue and all the other stuff (including a documented drop of 49 points in my IQ).

    I have two incredible doctors, a rheumatologist at Cedars-Sinai in Los Angeles (Stuart Silverman), and a neurologist in Santa Barbara. I've been on just about every medication that is used for FM/CFIDS, but nothing really helped, except the FM Rehab program at Cedars in '96.

    A couple of years ago, both doctors recommended that I try Xyrem. I resisted for a year because of silly fears about the stigma and how "dangerous" it seemed. I started taking it in March 2005, and by September 2005, my symptoms were virtually gone!

    There is a lot of research indicating that PWFM have Central Nervous Systems (CNS) that idle high all the time, and one theory is that this is why we don't get the level three and four sleep that we need. Since these are the levels of sleep where the body makes repairs, neurochemicals, hormones, and other vital substances, the longer you go without this sleep the sicker you get and a downward spiral results. I went without this type of sleep for 14 years, and I was the sickest FM patient my neurologist had ever seen. My sleep disorder was so bad that my rheumatologist lumped me with his "chemical brain injury" patients when researching treatments.

    Today, my pain is completely gone, except for an occasional migraine. I sleep like a baby at night, fatigue is rare, and my cognitive problems have almost completely resolved. All of the other stuff like IBS, irritable bladder, rashes, etc. are also gone. I'm going through a very stressful divorce and I flipped my mini-van last month (no injuries), but the symptoms still haven't flared!

    Xyrem had been like a miracle for me. Dr. Silverman has done one study on it for the government, and is one of the researchers in the currently mutli-site study. My neurologist has been using Xyrem in narcolepsy patients for years, but started using in for FM a few years ago and has had miraculous results.

    I know that nothing works for everyone, but this medication has saved my life. If anyone wants more information, I'd be happy to share. I don't have a lot of time to check the message boards here, but I will try to check in daily.

    God Bless you all,

    julie (is free!)

    You can lean too hard on regret
    but I don't recommend it.
    'cause half the good things in my life
    came from half my mistakes.. - Radney Foster
  2. TXFMmom

    TXFMmom New Member

    How much do you take and how did they work you up on the dose?

    I have considered using this drug, as I have hugely disordered sleep and I think that were I to be able to get into restorative sleep it would help, immensely.

    FM runs in my family. However, I have the most severe case of it, and I was a Certified Registered Nurse Anesthetist for well over twenty years and I think the exposure to the anesthetics for all those years and the cleaning solutions in the operating rooms, etc. accelerated my symptoms and intensified them.

    Thanks again for your post.
  3. julieisfree05

    julieisfree05 New Member

    Hi TXfmmom,

    In the studies that are on-going, patients take 4 grams right before bed, then set an alarm clock and take another 4 grams 3-4 hours later. The half-life is only 3-4 hours, so most people need two doses to get enough sleep.

    When I first tried XYREM, I had an "opposite" reaction at only one gram. It made me aggitated instead of making me sleep. When I gradually increased it to 4 grams, hoping that I just needed more, I had something resembling a seizure. I've spoken to the people at "Advocates for Sleep" and this is a rare, but not unheard of reaction.

    I had been in a flare from swimming with dolphins at Seaworld (a wetsuit and 40 degree water - but SO worth it!), when I started the XYREM. Despite not sleeping, I did notice that after only four nights of taking the XYREM, the pain from the flare had disappeared. This told my neurologist that I was benefitting from the medication, and we just needed to off-set the aggitation so that I would sleep.

    He is absolutely brilliant, and willing to try "unconventional" things, so we added back the klonopin and trazadone that I had been taking to off-set the aggitation. We also found that two doses left me sleepy in the morning, so we changed it to one dose of 6 grams, along with the other two medications.

    We started at 1 gram, and gradually increased it to 6 grams, finding that 6 was the right amount at that time. Narcolepsy patients usually take two doses of NINE grams, so one dose of 6 grams is not unusually large - especially if your sleep disorder is as brutal as mine was.

    One thing to beware of!!!

    Once your body starts to get enough "good" sleep, you may not need as much as you did at the beginning. I thought that I would always need 6 grams (at least until they find a cure - LOL!), but after about 9 months, we think that I was becoming overmedicated.

    Apparently, the XYREM worked like a "reset" switch, and once I had enough "good sleep", I didn't need as much. There was no way for me or my doctor to know that, since the half life is so short.

    I would advise anyone who tries this medication to have someone they KNOW they can trust, that can make sure they are not becoming overmedicated..

    I mentioned that I am going through a brutal divorce, and my illness and this medication have become an issue in the custody "war". I can't discuss the details, but it is possible that after taking this medication for a while, you may need less, or you may not need it at all anymore.

    I'm sorry to have to be cryptic here, but I am under a gag order from my attorney regarding the details of exactly how much XYREM I currently take.

    If you want to email me and talk privately, you can reach me at:

    julieisfree05@yahoo.com

    I hope this can help.

    God Bless,

    julie (is free!)

    "When you are going through Hell, keep going!"
    - Winston Churchill



    [This Message was Edited on 04/19/2006]
  4. MaryCecelia

    MaryCecelia New Member

    I so appreciate your post and am glad for you. I started Xyrem this March and am having some great results. (I have fibro, CFS, and Lyme.) I've been on 6 mL x 2 for several weeks and just raised it to 6.5 because I started awakening after 2 hrs. needing to go the bathroom. I'm still not sure I've found the best dose for me (I see my dr. next week), but I am thrilled with what progress I have made. My sleep study showed the alpha wave intrusion, by the way.

    I, too, resisted it for 2 years because of my fears, but taking it is one of the best decisions I've made. Your post gives me even greater hope!! Did you steadily improve, or was it very gradual? Thanks again for sharing!
  5. bunnyrabs

    bunnyrabs New Member

    MaryCecelia,

    Did you have the aggitation or seizure-like reaction that Julie had? Seems like a couple of weird side effects, especially the seizure thing. Maybe Julie could elaborate on that side effect.
    [This Message was Edited on 04/19/2006]
  6. julieisfree05

    julieisfree05 New Member


    I'd be happy to..

    Like many of us, I'm very sensitive to most medications, and I sometimes have adverse, or "opposite" reactions. I take Dilaudid for ER level migraines, and it wipes most people out. When I take it, the migraine disappears, and I'm ready to do whatever I need to - no sedation.

    Before I tried the Xyrem, my sleep was so bad that I was staying awake for 2-3 days at a time. My rheumy actually had me wear a monitor to track my brain activity because NOTHING would knock me out.

    The first night I took the Xyrem, I took 1 gram. Instead of the normal "insomnia", I felt like I'd just had a huge cup of coffee. The next night, I increased it to two grams, and the aggitation was worse. Just feeling like I couldn't sit still, and I was awake all night again. I increased it again the next night to three grams, and it got worse.

    The last night, I went to four grams, and I started shaking uncontrollably. "Seizure" was probably the wrong word. However, I was twitching and shaking so badly for about 20 minutes that my future-ex (f/x) almost called an ambulance. If it had gone on much longer, I would have gotten a ride that night.

    When I called my rheumy, he said, "Well, we tried".

    When I called my neurologist, he said, "This is not a sleep medication. It is a CNS Depressant. Did you feel ANY improvements in the FM symptoms?"

    That's when I realized that the pain from the flare that the wetsuit (swimming with dolphins?)caused, was GONE! When I told him, he said, "OK, then we know it's helping the pain. We need to offset the aggitation so you'll sleep, and still get the benefits of the Xyrem." I had been taking Trazadone and Klonopin (they weren't working), so he told me to add back a small dose of each.

    I waited about six months until Spring Break 2005, so if I did have a bad reaction my son could stay with family. The first night, I fell asleep and didn't wake up for about five hours. I didn't dream. I didn't hear the cat walking on the carpet. I SLEPT!

    After a few nights, we found the dose that was right for me at that time. Once we started using the other meds, I never had any aggitation again, and I started sleeping like a baby every night.

    I've spoken to the "Advocates for Sleep" people, and the aggitation is a rare occurance, but they had heard of it before. If you feel aggitated at a low dose, PLEASE DO NOT increase it until you talk to your doctor!!

    There is a way to get around it if it happens to you, if your doctor is brilliant and willing to try unconventional things. Most of them aren't. My neurologist saved my life by being willing to get creative when we saw that I was benefitting from the Xyrem - even with the aggitation.

    I hope this helps..

    God Bless,

    julie

    I'd like to see a lot less of the inner child, and a lot more of the outer adult! - Dennis Miller
  7. julieisfree05

    julieisfree05 New Member

    I improved steadily, but gradually. I had been ill for almost 14 years when we got it to work for me, so there was A LOT of repairing to do!

    I had little FM pain at that time, but I had daily migraines that usually required vicodin for me to function. Fatigue was also a HUGE problem. I also used to sweat constantly and my immune system was trashed.

    After only a couple of months on the Xyrem, the fatigue improved significantly.

    Within six months, the daily migraines had also resolved, and I stopped needing opiate pain medication for anything.

    I was also able to go off the medication that I used to prevent the daily migraines, and they have not come back. I still get one occasionally, but the are rare now.

    This is the first year since I was a teen that I did not get a horrific sinus infection, so I know that my immune system is working better than it has in "forever".

    Unless you have a setback, this seems to be the pattern that both of my doctors have seen with this medication in most of their patients.

    God Bless,

    julie (is free!)

    All I know
    is love can heal
    what nothin' else can heal.. - Radney Foster
  8. tandy

    tandy New Member

    Its a maybe for me.
    I'll research it further then possibly ask my Rheumy about it.
    BUT,......
    I'm thinking/wondering ,if this drug is a anti-seizure med.
    like provigil,.... I had a bad reaction to that one and did'nt like it at all~ I was extremely aggitated.
    (see old posts about provigil)
    I felt horribly aggitated and easily angered by my children!! and I'm never like that.

    I am glad you mentioned this drug tho~
    It could help some of the members here.

    Take care :)
    Tandy
  9. nanna4550

    nanna4550 New Member

    I was just reading the immune support newsletter about this drug. Sounds promising. I'm getting some relief from Cymbalta for pain and Lunesta for sleep, but I still have to be careful not to overdo and I really have to push myself to get things done (I'm tired all the time). When I tried mirapex for restless leg syndrome, I was extremely dizzy and sick. This isn't the same kind of medication, is it?
    Also, are you still taking trazadone for sleep or just the xyrem?
    I am glad you are doing so well, it's so wonderful to hear that some are getting better. Yea!!!!!!
    LOL, Nanna
  10. julieisfree05

    julieisfree05 New Member

    Hi Tandy,

    I assumed that the people here had read about Xyrem in the newsletter.

    It's chemical name is Sodium Oxybutrate, and it's very closely relateed to Gamma Hydroxy Butrate...aka, the "date rape drug".

    It was sold for years OTC in Europe as a natural sleep aid. It works by depressing the central nervous system, and if your are like many PWFM, it's idling high all the time. No matter how many sedatives you take, if the CNS is running high, you won't get level three/four sleep.

    After it began being abused so badly, it was banned in Europe and the US, but since it was so effective at treating narcolepsy, the FDA allows one compounding pharmacy to make it (Orphan Pharmaceuticals). In order to get it, your doctor has to be in the data base, and to get into the data base, they must prove that they know how to prescribe it and that they have patients who need it.

    Both of my doctors are in Orphan's data base.

    I've been on several anti-seizure medications to prevent migraines and for chronic pain, but never had an adverse reaction like I did from the Xyrem - but like I said, it is VERY rare..

    God Bless,

    julie

    The only ones
    who make this world any better
    are fools
    who dream..... - Radney Foster

  11. bunnyrabs

    bunnyrabs New Member

    julie,

    Were you on any other medications while you had the adverse reaction to Xyrem? Particularly any other seizure meds that you were using for migraines or chronic pain?
  12. julieisfree05

    julieisfree05 New Member

    Yes!

    I was taking an MAO Inhibitor (Nardil), which had worked incredibly well at preventing my migraines prior to developing FM/CFIDS.

    Nardil is the only thing I was taking, and my doctor thoroughly researched the possibility of interaction prior to prescribing the Xyrem.

    MAO Inhibitors increase the availability of Dopamine in the brain, and they tend to be stimulating. The combination of Nardil and my 'opposite' reaction to the Xyrem could have accounted for my severe aggitation.

    I suppose...

    Since Xyrem is NOT supposed to cause aggitation, there is no contraindication with MAO Inhibitors, but that IS an entertaining new thought..:)

    BTW, I no longer need the Nardil for migraine prevention!

    julie (is free!)

    It's better to be hated for who you are, than loved for who you're not. - Various

  13. neen85

    neen85 New Member

    Great information and thank you so much for the patient detailed patient history.....glad you got great results! Daneen
  14. MaryCecelia

    MaryCecelia New Member

    No, I have not had any seizures. Some mornings I feel trembly inside (hard to explain), but I decided it might be because I was going over 14 hrs. without food. I had snacks the past 2 nights (banana &/or almonds) between supper and Xyrem and felt no shakiness in the a.m., so I must be on to something.

    Julie, thanks for answering my question.
  15. julieisfree05

    julieisfree05 New Member

    No. I found that taking two doses left me too sleepy in the morning. I took 6 grams at once, instead of the "normal" 4 grams and then 4 more grams 3-4 hours later.

    Like I've said, this medication did not work for me under the "typical" prescription (and the one being used in the on-going studies), but my incredible neurologist "tweaked" things to make it work for me.

    Regarding the cost..

    ..it IS very expensive, but I'm covered under Federal Workers' Comp because my FM is the direct result of a toxic exposure in the Navy Lab where I worked. So, my doctors and my prescriptions are paid for.

    I know I'm lucky in that regard, but I was never paid for the loss of my health, career, or any thing else. I didn't find a doctor who would definitively say that the exposure caused my FM until the deadline had passed for me to file suit.

    julie (is free!)

    All I know is
    love can heal
    what nothing
    else can heal.. - Radney Foster
  16. julieisfree05

    julieisfree05 New Member

    For those who don't know, you are supposed to take Xyrem at least four hours after you eat anything.

    I was having migraines from low blood sugar because of the time in between my last meal and morning. My neurologist had me start eating a small protein snack about 15 minutes after taking the Xyrem, and it stopped the morning shakes and migraines.

    HOWEVER!

    You must be careful to be ready to fall asleep when you take the Xyrem. If you do try to eat after taking it, make sure that someone you can TRUST is there in case you have problems.

    If you can't eat after taking it, then you have to be sure to eat a large enough meal, late enough, that you don't have low blood sugar in the morning (if that's a problem for you).

    - julie (is free!)

    Who's that man
    livin' my life....? - Toby Keith (sings it)
  17. TXFMmom

    TXFMmom New Member

    There is a new study on the Immune site about Xyrem and its' BENEFICIAL use in FM patients.

    Every drug can have drawbacks and may not be suited for all, BUT THIS ONE CAN BE A PANACEA FOR SOME OF US.

    THIS FAT LITTLE GIRL IS GOING TO STOP WAVERING AND TRY IT.
  18. TXFMmom

    TXFMmom New Member

    Julie, why in the world would he have you on an MAO inhibitor?

    THEY ARE DANGEROUS DRUGS AND CAN INTERACT WITH SO MANY THINGS, AND IF YOU GET SICK AND HAVE TO HAVE AN EMERGENCY SURGERY, MOST ANESTHETICS TODAY COMBINE NARCOTICS WITH THEM.

    I just would ask if there is something else, as there are numerous things which can be used to treat migraines, including beta blockers, and other things, which are less dangerous than MAO inhibitors.
  19. julieisfree05

    julieisfree05 New Member

    He had me on it because he a a genius..!!

    I started getting migraines three years before the toxic exposure that triggered my FM/CFS, after a severe sinus infection. They started at 11am EVERY DAY (you could set your watch by them), and they were getting to so bad that I was going to work at 3am to get my 8 hours in before they started.

    I tried ALL of the standard preventative stuff (and some that wasn't), and nothing stopped them. After almost two years, my neurologist (who also made the Xyrem work for me) asked if I was willing to try the Nardil.

    Instead of making me tired and fat, I had energy, lost weight, started exercising and the migraines were gone. I still got them occasionally, but the chronic, daily, "set your watch" type disappeared.

    There is recent research that shows some FM patients have a dopamine deficiency, and we think that this is what was causing the migraines.

    Now that I've been using the Xyrem, I've been off the Nardil for about four months with no return of the daily migraines.

    There are drug and food interactions with MAO inhibitors, but back in 1990, this was the best way to find out if dopamine was the problem. Once it worked, I wasn't willing to give it up! If you are careful, there shouldn't be a problem. I never had one with anything, unless it contributed to the aggitation with the Xyrem. If that was the case, it was not something that would have been contraindicated - so we couldn't have known about it.

    He still has a few migraine patients using it, based on my good experience with it.

    julie (is free!)

    Wish I didn't know now
    what I didn't know then.. - Bob Seger

  20. julieisfree05

    julieisfree05 New Member


    I should have said that a MEDICALERT ID is MANDATORY if you are taking MAO Inhibitors!!

    julie (is free!)

    I won't play this
    game no more
    'cause nobody wins.. - Radney Foster