Since starting dexamethasone I have had significant insomnia.
However, this insomnia on dex gives new meaning to the phrase " brain on steroids"..it is not simply wakefulness, where you are pondering an issue/situation that causes anxiety/worry.
I have hyperfocused concentration beyond belief. If I had been able to achieve this level of concentrated focus in undergrad, I would have earned 2PHD's in 4 years!
This level of concentration and ability to accumulate/acquire knowledge reminds me of movie LIMITLESS. It is intense and all consuming. I SEEK data like a honing device.
I wonder if it simply potentiates your natural strengths..IOW's I can read,analyze and digest data at a super rate & as the rappers say..SPIT out comparative clinical trial data to an unparalled degree. If music were my strength would I be up composing new songs creating platinum songs? If I was an artist/architect would I be painting masterpieces and designing buildings of historical significance to be marveled at centuries later?
I am beginning to wonder if this is a curse for having been lazy and not using my 'god given' talents to their fullest degree...I chose to limit the time immersed in acquiring knowledge, cuz I wanted to PARTY instead!!....nerds were not popular. IOWs is this my karma for not having utilized the potential I was given?
HeeeeeLP, please!!!!! I have been awake 32 hours now.
Gotta take next dose in 4 hours.
Has anyone else experienced this insomnia...if so what have you done to ameliorate it?
Forums
Re: Dexamethasone and insomnia
Been there and done that, Suzie, but can't be of much help as it is what it is. I ended up just taking the dex once a week (40 mg). It didn't seem to matter how small the dose I still couldn't sleep, so for me it was better to be sleepless 2 days instead of 4. For me time of day when I took it made a difference. If I took it before noon I would sleep a couple of hours the first night and then 2 or 3 hours late into the 2nd night.
My son and I did a 1500 mile straight thru trip and I drove from 1 am to 7 am without any trouble at all. If you are planning a trip, I guess that would be a good point.
Ritz
My son and I did a 1500 mile straight thru trip and I drove from 1 am to 7 am without any trouble at all. If you are planning a trip, I guess that would be a good point.
Ritz
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Ritz - Name: Ritz
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Oct 2010
- Age at diagnosis: 62
Re: Dexamethasone and insomnia
On Dex nights I often take Zolpidem or Lorazepam. With Zolpidem you need to get yourself as relaxed as possible BEFORE taking it, to increase the chance of falling asleep. With Lorazapem it takes a while to take effect, and it acts more slowly.
Good luck.
Good luck.
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Arizonan - Name: Arizonan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 54
Re: Dexamethasone and insomnia
The litany of mental side effects dexamethasone can cause is fairly long and includes:
Depression, emotional instability, euphoria, headache, intracranial pressure increased, insomnia, malaise, mood swings, neuritis, personality changes, pseudotumor cerebri (usually following discontinuation), psychic disorders, seizure, vertigo ...
I generally warn my patients that dex can cause insomnia, anxiety and irritability and offer to prescribe an anti-anxiety agent or insomnia agent if this occurs. Drugs that are routinely used for this purpose include Ativan (lorazepam) and zolpidem (Ambien). Patients with underlying anxiety disorders, depression, tendency to bipolar disease etc should be more cautious and observant for these effects. Steroids can precipitate severe mental side effects in patients with underlying mental health problems.
Depression, emotional instability, euphoria, headache, intracranial pressure increased, insomnia, malaise, mood swings, neuritis, personality changes, pseudotumor cerebri (usually following discontinuation), psychic disorders, seizure, vertigo ...
I generally warn my patients that dex can cause insomnia, anxiety and irritability and offer to prescribe an anti-anxiety agent or insomnia agent if this occurs. Drugs that are routinely used for this purpose include Ativan (lorazepam) and zolpidem (Ambien). Patients with underlying anxiety disorders, depression, tendency to bipolar disease etc should be more cautious and observant for these effects. Steroids can precipitate severe mental side effects in patients with underlying mental health problems.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Dexamethasone and insomnia
Thanks for the response Dr. Libby.
I am a little concerned that the symptom of insomnia being focused on with dexamethasone when clearly there is a far greater neurobiologic impact on the neurotransmitters resulting in the wakefulness as an experience of the imbalance within the limbic system.
While there is a long list of mental effects, there is no list for how to treat those mental imbalances.
A sleep agent hypnotic for insomnia definitely is not impacting the underlying cause of what has happened to the neuro biology. I submit it may even potentiate the underlying neuro chemical imbalance at best and induce further psychosis while desensitizing the limbic receptors to re-stabilize themselves.
How can any patient know they have 'underlying' mental health issues prior to dexamethasone therapy?
I am a little concerned that the symptom of insomnia being focused on with dexamethasone when clearly there is a far greater neurobiologic impact on the neurotransmitters resulting in the wakefulness as an experience of the imbalance within the limbic system.
While there is a long list of mental effects, there is no list for how to treat those mental imbalances.
A sleep agent hypnotic for insomnia definitely is not impacting the underlying cause of what has happened to the neuro biology. I submit it may even potentiate the underlying neuro chemical imbalance at best and induce further psychosis while desensitizing the limbic receptors to re-stabilize themselves.
How can any patient know they have 'underlying' mental health issues prior to dexamethasone therapy?
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Dexamethasone and insomnia
What I mean by "underlying mental health problems" are patients with a diagnosis of depression, manic depressive disease, bipolar illness, severe chronic anxiety and psychosis. The great majority of patients get through the side effects of dex and essentially no patients have long term effects.
I would ask your hematologist oncologist to reduce the dose by 50% to start with if you cannot tolerate the drug. Another option is to use prednisone (seems to be better tolerated).
I would ask your hematologist oncologist to reduce the dose by 50% to start with if you cannot tolerate the drug. Another option is to use prednisone (seems to be better tolerated).
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Dexamethasone ... insomnia
Hi,
I also have had significant insomnia with dex. I'm in the maintenance phase of a clinical trial now. When I started the dex dose was 40 mg once a week and my insomnia was quite bad. I haven't really noticed the other mental "benefits" you describe although I do feel quite efficient and focused on the first day I take it--although after a night or two of less-than-optimal sleep that tends to go away
My doctor cut my dex dose from 40 to 20 mg per week due to my ongoing sleep issues and other problems such as weight gain. So far, to be honest, I haven't noticed that much difference, but I think I may be sleeping a bit better after the first day. I do sometimes take half an Ativan before bed on the day I take the dex. I seem to be quite sensitive to it so even with just half a pill I still feel a bit groggy and "out of it" the next day. Still, it does let me get a few more hours' of sleep than I would otherwise.
I would definitely discuss this with your doctor, because even thought some of the effects you're experiencing might be interesting, going without sleep for too long is definitely not healthy!
Karen
I also have had significant insomnia with dex. I'm in the maintenance phase of a clinical trial now. When I started the dex dose was 40 mg once a week and my insomnia was quite bad. I haven't really noticed the other mental "benefits" you describe although I do feel quite efficient and focused on the first day I take it--although after a night or two of less-than-optimal sleep that tends to go away
My doctor cut my dex dose from 40 to 20 mg per week due to my ongoing sleep issues and other problems such as weight gain. So far, to be honest, I haven't noticed that much difference, but I think I may be sleeping a bit better after the first day. I do sometimes take half an Ativan before bed on the day I take the dex. I seem to be quite sensitive to it so even with just half a pill I still feel a bit groggy and "out of it" the next day. Still, it does let me get a few more hours' of sleep than I would otherwise.
I would definitely discuss this with your doctor, because even thought some of the effects you're experiencing might be interesting, going without sleep for too long is definitely not healthy!
Karen
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Karen - Name: Karen
- When were you/they diagnosed?: December 2010
- Age at diagnosis: 51
Re: Dexamethasone and insomnia
I take dexamethasone Mon and Tue nights 20 mg per night I first take a sleeping pill my husband then gives me my dex with milk 15 minutes later. I am able to sleep until 4 am. The Dr. suggested this so I would sleep through the night. Sometimes I make it till 6. blessings to all of you Mary Louise.
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mlweezieclark
Re: Dexamethasone and insomnia
Hi Karen and mlweez!!
Dexamethosone is a trip...and the dosing is as well. No dose ranging studies are available.
I had read that 4mg Dex, kept away the chils and fever that can accompany carfilzomib. Since no one was sure if the chils and fever would continue, I took the 4mg for 3 days to ward off chill.
WELL that sent me into such a complete ZOOM state of mind that I was totally apprehensive when I learned that not only was I not to have taken the 4mg continuously but only to take 20mg on infusion days.
I was having such significant CNS side effects at that point that I could not fathom taking 5x that dose on days of infusion.
DEX is no JOKE!!...It works on the GABA receptor in the brain..which is kinda like the brake in your car. Sooo your brain has no brake!! You just ZOOOM on full acceleration. Brain on steroids is what it is.
More importanly, I learned that the dose of dex is COMPLETLY arbitrary!! Can't find any studies that elucidated the best dosing for activity vs. IL-6 when it comes to multiple myeloma. My guess is that just like doctor Rakjkumar tried low dose 20mg (based on side effects) arbitrarily and found out it works as 40mg ...for all we know 10mg of DEX works just as well!!.. and no one has done that study yet!!
Just to show the complete aribtrariness of it all, they are now doing studies with bortezomib every OTHER week.
There is the possibiliity that we can obtain the same efficacy not only with 10mg DEX but bortezomib every other week as well.
All this is a long way of saying...talk to your MD about lowering your dose...have him explain why he is giving that dose THERAPEUTICALLY...yes, he can say this was the dose in clinical trials shown to be effective BUT that does NOT mean lower does are not effective..and if you are having side effects, it would be reasonable for him to make a dose adjustment.
IMHO
suzierose
Dexamethosone is a trip...and the dosing is as well. No dose ranging studies are available.
I had read that 4mg Dex, kept away the chils and fever that can accompany carfilzomib. Since no one was sure if the chils and fever would continue, I took the 4mg for 3 days to ward off chill.
WELL that sent me into such a complete ZOOM state of mind that I was totally apprehensive when I learned that not only was I not to have taken the 4mg continuously but only to take 20mg on infusion days.
I was having such significant CNS side effects at that point that I could not fathom taking 5x that dose on days of infusion.
DEX is no JOKE!!...It works on the GABA receptor in the brain..which is kinda like the brake in your car. Sooo your brain has no brake!! You just ZOOOM on full acceleration. Brain on steroids is what it is.
More importanly, I learned that the dose of dex is COMPLETLY arbitrary!! Can't find any studies that elucidated the best dosing for activity vs. IL-6 when it comes to multiple myeloma. My guess is that just like doctor Rakjkumar tried low dose 20mg (based on side effects) arbitrarily and found out it works as 40mg ...for all we know 10mg of DEX works just as well!!.. and no one has done that study yet!!
Just to show the complete aribtrariness of it all, they are now doing studies with bortezomib every OTHER week.
There is the possibiliity that we can obtain the same efficacy not only with 10mg DEX but bortezomib every other week as well.
All this is a long way of saying...talk to your MD about lowering your dose...have him explain why he is giving that dose THERAPEUTICALLY...yes, he can say this was the dose in clinical trials shown to be effective BUT that does NOT mean lower does are not effective..and if you are having side effects, it would be reasonable for him to make a dose adjustment.
IMHO
suzierose
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Dexamethasone and insomnia
Very interesting discussion & suzierose, I always appreciate your research and insights! My mom is starting her Revlimid/dex treatment tomorrow and was told to take 10 4mg dex pills per week. The nurse said she could take them all on the same day or spread them out over the week. Mlweezie, I noted that you take 20mg per day for two straight days. Is this something that was suggested to you or did you just determine that it works best for you this way?
My mother sleeps VERY little as it is! She's 92 pounds of pure energy and never wants to stop working on things ... cleaning the house, cooking, craft projects, caring for my disabled father, working in the yard, etc. In personality types, she would be an "AAAAAA"
! I cannot imagine her any more "hyper" than she is already and just hope that she'll still be able to find some way to get the sleep she needs. I'm sure I'll be posting on how things go ... might even need advice on how to keep her from literally "climbing the walls"
Blessings everyone!
Lisa
My mother sleeps VERY little as it is! She's 92 pounds of pure energy and never wants to stop working on things ... cleaning the house, cooking, craft projects, caring for my disabled father, working in the yard, etc. In personality types, she would be an "AAAAAA"
! I cannot imagine her any more "hyper" than she is already and just hope that she'll still be able to find some way to get the sleep she needs. I'm sure I'll be posting on how things go ... might even need advice on how to keep her from literally "climbing the walls" Blessings everyone!
Lisa
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Lisa B. - Name: Lisa B.
- Who do you know with myeloma?: My mother, Barbara Henson
- When were you/they diagnosed?: 10-28-11
- Age at diagnosis: 71
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