I've been living with MS for 25+ years and have tried almost every medication available. I have also been evaluated and tested extensively.
Temporary insomnia is part and parcel of receiving an IV of Solu-Medrol steroids, which is prescribed to combat a MS flare-up. The insomnia is one of the reasons MSers don't want to consider steroids unless the flare-up is very crippling or very long lasting. No one wants to be up for nights at a time, unless it is absolutely necessary. If MS fatigue is already an ongoing part of your disease, as is the case with me, just thinking about being even more exhausted than usual is most disconcerting.
At least, as with all of the other side effects of high-dose steroid treatment, the insomnia will not be chronic. Usually, your normal sleeping routine will not be upset more than a week or so after the steroid pulse has been discontinued.
Still, many wonder why the insomnia occurs and what, if anything, can be done to handle all the lonely nights spent unable to get some quality rest.
Why the Temporary Insomnia Occurs
Solu-Medrol is used to calm the inflammation that occurs when our body attacks itself, resulting in a flare-up. The dosage is very high, over-stimulating, and almost totally controls our endocrine system.
It's as if the steroids have successfully invaded your endocrine system and set itself up as the new commander-in-chief. It plans on staying forever but doesn't realize it doesn't have the full support of your endocrine system, which has decided to retreat and regroup until the nasty steroid pulse is over, at which time it will slowly reassert itself as head of your adrenals.
While in retreat mode, however, the steroids get to wreak havoc on all your crucial glands and hormones, including all of the systems that allow you to relax and get some sleep. Not to fear—just remember this is a temporary thing. Once the steroids are out of your system, your endocrine system will reset, reestablishing your natural body clock in the process.
Obviously, if your MS is flaring up and causing you disability, unusual limb weakness, or even severe eye problems, such as optic neuritis, you will welcome the steroid pulse your doctor recommends. It will lessen the attack your body is waging on itself, and shorten the duration of the attack. Although it might not necessarily have you back to your old self for a couple of months or so, it is still welcomed by many for whatever good it will do after it is absorbed into the system and has time to work.
So the step that comes next, is how to handle the temporary side effects of the steroids, particularly the insomnia.
Coping With Insomnia
I have a great collection of DVDs that I use when I'm bedridden or on a pulse of steroids and find myself wide awake at 2:00 or 3:00 in the morning. I also have a Netflix account, which provides a wide variety of movies at a great monthly price.
Riding Out the Long and Lonely Nights
- Mental preparation is key to handling the insomnia. If your doctor has prescribed a pulse of steroids, begin mentally preparing yourself for the ordeal to come. It is important to remain as calm and tranquil as possible, so try not to fill yourself with dread at the impending loss of sleep and other uncomfortable side effects of the Solu.
- Next, try to make the initial appointment for the first infusion as early in the day as possible. In my own experience, I have a home health company that sends a nurse out to get my infusion set-up so that I can take it from there. I ask that she comes as soon as early as possible because I know I will be up for at least 18 hours after the infusion is concluded. When I am setting up my own infusion, I do it first thing in the morning, as soon as the IV solution reaches room temperature, which allows me to get about 4 hours of sleep. If you are going to an out-patient facility, try to arrange an early appointment. I have actually waited a day or so to get the earliest appointment because it is so much harder on me when the first infusion begins after Noon. If you find this to be true in your case, an earlier appointment might be helpful to you.
- If you take a sleep aid in order to combat restless leg syndrome, or the inability to stay in a deep sleep. Ask your doctor if it is OK to increase your dosage until your steroid treatment is over. I take 1-1/2 of my normal sleep aid whenever I am on a steroid pulse. Even with that, I can only count on 4 hours of sleep, at the most.
Once the Steroids Kick In
Now the real fun begins. You have that disgusting metallic taste in your mouth, so you know the steroids are kicking in.
Most people love the initial surge of energy they get from the steroids. MSerswho haven't had the energy to clean the way they want, or the focus to balance the check book or pay the bills, dive into any and all activities with a zest that hasn't been felt since the last time they were on steroids. If you are brand new to steroids, you just can't believe how much energy you have. You plan to cook, clean, bake, sew, garden, exercise, paint . . . the list seems endless matching your new energy level. It's here you need to s l o o w w w . . . yourself down.
Yes, your system is raring to go, but remember there is a reason you've been put on steroids. You are trying to weather an intense attack your body's own immune system is raging on itself. Fight the urge to do too much. Pace yourself and be glad to accomplish tasks in small allotments. You are so revved up that you can literally go non-stop, but don't allow it to happen. Your body pays the price and it actually hurts your recovery when you wear down an already over-taxed body.
Use this time to engage in activities that are fulfilling and calming. Once you've engaged in physical activities, plan to engage in some mental activities that don't take much energy.
- Sewing, knitting or crocheting
- Balance that check book and pay those bills
- Read whatever you'd like
- Take a relaxing bath
- Write some overdo letters or e-mail
- Browse the Internet
- Play a computer or video game.
- Listen to music
- Watch your favorite DVD's
- Pick up that musical instrument you haven't played in ages.
- Actually THINK about your life and positive things
- Use the time to do something nice for your family, surprise them!
As you can see, with some forethought, the list of things you can do BESIDES cleaning or other physical exertion is endless. Becoming your own best friend is a great comfort when you are the only one awake in the middle of the night. Its then that you can journal or blog, or do something just for you. Give yourself a manicure, change your hair style. Anything that makes you feel good about yourself is worth considering.
Once the Steroid Course Is Over
You've made it through the mania, now you have to manage your way through the CRASH! It is difficult, you will be tired, grouchy on edge and sick and tired. Again, remember this too shall past. It is important to face the fact that all the energy is gone and your body is now awakening from its sleep and trying to reestablish control. It is slowly getting itself back up to its normal level, but as you can feel, it is not easily doing so.
Help your body, help itself.
- Drink plenty of water still. Your body now has to flush all the toxins and waste left over from the steroids.
- Remember your blood pressure is now higher, as is your sugar level. Since your craving for sweets and anything fattening has probably subsided, concentrate on eating healthy. Eat fruit and vegetables and fish. You will suffer constipation, so fruits, veggies and water will help.
- Don't be discouraged if the problem that put you on the steroids is still there. It can take 2 to 3 months before the steroids really help. It will be a slow climb upwards, but it will come. In worse cases scenarios, if your flare is aggressive enough, you will be asked to do another course of steroids. Many times though one pulse does the trick, and if results aren't immediate, they will still come.
The Return of Sleep
The signal that tells me the steroids are successfully moving out of my system is the first night that I'm finally able to fall asleep and feel as if I've slept soundly. If you have been on steroids a number of times, then it may only take a couple of nights before your sleep clock resets. If it is your first time, or if your body has a harder time riding itself of steroid residue, you may find it takes up to a week before you get that good night's sleep. It will come, though, so patience is required.
You are to be congratulated any time you can make through a pulse without any significant problems. Hopefully you won't need another pulse for a long, long time—but if and when you do, you will know how to handle all phases of the treatment, and your body will hopefully quit attacking you for a good long time!
FDA Information about Solu-Medrol
- Solu-Medrol Official FDA information, side effects and uses.
Drugs.com provides precise medical explanations of Solu-Medrol which might interest some researchers of current MS treatments. Under "Indications" you will notice numbers 6 and 12 are directly related to Multiple Sclerosis treatments.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
Jen's Solitude (author) from Delaware on April 05, 2016:
Drink plenty of water to help flush your system.
Bristow on April 05, 2016:
I wast just prescribe with this med and immediately after the first day of taking it, i did not get to sleep at all. I called the doctor that gave me the meds and told her that I refused to take it. How can I go to work if I am weak and could not even sleep. I am on my 48 hours of not sleeping. How can I flush this out of my system?
Nasim on July 10, 2015:
Thank you all for the input. I had my 4th out of 5 infusion done today. I have probably slept a total of 9 hours in these 4 days and what makes it harder is that I have a 4yr old and an almost 2 year old so ove become a light sleeper over these years and if they ever make a peep I wake up and it's so hard to get back to sleep. On the best positive note, my left legged weakness, which is the reason I'm doing this has gotten much better. My foot no longer twitches and I have much more power when I walk. I almost don't think of raising my leg to walk since the first Fay of the infusion so this is all sooo worth while. I just hope it remains. My digestive system is also in a whirlwind, if I don't have a full stomach I feel like my esophagus, stomach, and intestines are going to explode. Anyone else have that tightening sensation?
Jen's Solitude (author) from Delaware on March 22, 2012:
Yes Angela it takes longer to recover from a 5-day cycle. I am glad my cycles were mainly 3 days long. Hope you are get back to your regular sleep pattern in the near future, especially with 4 children to care for, you certainly need your rest!
Angela Hoffer on March 21, 2012:
I just finished my last dose on Saturday of a five day course and I still can't sleep I have four children and no time for this craziness!!!! I'm just happy to see I'm not alone god bless us all MSers;)
Jen's Solitude (author) from Delaware on February 14, 2012:
karen, how many days will you be on the Solu-medrol? I have never experienced more than a 3-day course and can only imagine what the sleeplessness is doing to you. ON is usually helped with steroids and time. But I know that doesn't make it better for you right now. Hang in there I look forward to you feeling better soon.
karen sur on February 14, 2012:
thank you for reminding me that I am not alone....I have had about 12 hours of sleep in 5 days and I am miserable. I was feeling scared and lonely...thanks to everyone for their posts....I just hope the Optic Neuritis eventually gets better!
I hate this stupid disease....
Jen's Solitude (author) from Delaware on August 29, 2011:
Hi Jodie I am very pleased this article was able to lay your concerns to rest. I have experienced sleeping problems a full week after completing an infusion, but it finally gets back to normal. Hope the treatment helps you!
JODIE on August 29, 2011:
I have just completed my first 3 day infusion and I found this information very helpful. I have not been able to sleep well for the last 4 days and was beginning to wonder if I would again, but after reading your posts I know I just have to wait. Thankyou so much.
Steroids uk on September 03, 2010:
my doctor never warned me that cortico steroids could cause insomnia.
Jen's Solitude (author) from Delaware on March 12, 2010:
Yes travel_man1971, thirst often accompanies steroid use. I am not so aware of drowsiness, unless that was a symptom of your allergies that the steroids couldn't combat. Sorry to read about the fungi infection, please take care of yourself.
Ireno Alcala from Bicol, Philippines on March 11, 2010:
You always have descriptive hubs. It will help others who are experiencing the same. I've taken pills with steroid to lessen the effects of my allergy (mildew simplex-that I haven't written about). I always felt drowsy during work and thirsty, too. I was onboard my 2nd commercial vessel, then. I had to agree with an ampule of injection to totally vanish the effects of the fungi in my body. It is recurring whenever I work in the vessel.
Jen's Solitude (author) from Delaware on January 30, 2010:
Thank you so much Has_aWayWithWords! I certainly will follow your advice and I appreciate you taking the time to leave me a comment.
Has_aWayWithWords from United States on January 30, 2010:
Your MS hubs are quite enlightening. I have known one person in my life who suffered from this disease and I must say I admire anyone who can meet the challenge head on and live a successful life. Keep going and fight hard, I sincerely hope everyone who suffers from this or any other crippling disease finds inspiration from you.
Jen's Solitude (author) from Delaware on January 14, 2010:
Good, I will look forward to reading about the details, especially since I also do home infusions. Your perspective will be interesting.
Suzanne Marcelle from Massachusetts on January 14, 2010:
Hi Jen. Yes I think I will write about the 5 day treatment. I know, I wish they could've got me in sooner but we'll see. Thanks for the well wishes! I think I'll bring my notebook with me to my treatments!
Jen's Solitude (author) from Delaware on January 13, 2010:
Hi there Suzanne, I totally understand wanting to feel better. I wish you could get started before Monday, but glad to read you will be starting in 5 days or so. Do you think you will feel up to doing a series on what it is like to be on steroids 5 days in a row? The longest I have been on them is 3 days. I think it would be very interesting to read of your experience.
I'm glad you'll be feeling better soon!
Suzanne Marcelle from Massachusetts on January 13, 2010:
Going to be starting the IV this Monday coming. I'll be on it for 5 days and I have to say I can't wait because I just want to get better. I haven't had the IV in years but I do remember not sleeping but for me it is always so worth it. (although at the time it doesn't feel it haha)
Great hub Jen!
Harvey Stelman from Illinois on July 13, 2009:
For newcomers to this drug sleep is not going to last long if it happens at all. Being on it many times, I slept during infusion.
It's just you and me Jen.