Many sickle cell warriors have insomnia. I haven’t been able to figure out the biophysical reasons around this, but I’m actively searching. The only hypothesis I have is that insomnia is somehow due to the pain meds we take. Perhaps our bodies become attuned to drowsiness only with opiates and as a result we can’t fall asleep without sleep aids.
I’m truly nocturnal (as you can see my blog postings are usually between 1 and 4 am). I have been a night owl as far back as I can remember. Going to bed early for me is hitting the sack at 2am. I think better at night, and I honestly believe that there is truly nothing more soothing than having a nice, quiet house all to yourself:)
However, I know that those of you that work regular jobs find it difficult to be alert and functioning after staying up til 4am in the morning. I know that many toss and turn for hours, while others have to take Ambien, Benadryl or some other sleep aid.
The most effective thing that works to put me to sleep after all my other routines have failed is a dose of Melatonin. Melatonin is a natural sleep hormone, produced by the body when you are lying at rest in a darkened room. Melatonin helps to shorten the time it takes to fall asleep, promote sleepiness and lengthen the time you are asleep.
The first time I took it, I had 3mg, which was way too much for me!! It had me feeling sleepy even when I was awake at work..ugh! I gradually modified my dose, and now I take 1mg about 30 minutes before I want to sleep. I do not use this every night, just on those nights when I’m having trouble falling asleep, or have to force myself to sleep because I have an early meeting in the AM.
Melatonin can be gotten from your natural supplement store, local pharmacist or grocery store. Be careful with the dose you select: it comes in 1mg, 3mg and 5mg. The body naturally secretes between 0.1-0.5mg, so some experts have argued that the pharmaceutical dosing is too much. But you also have to take into account that not all of the Melatonin will be absorbed in your body (since stomach acids tend to neutralize a large % of ingested medications).
In addition, research has shown the the amount of Melatonin secreted by the body decreases gradually as we age. This is why older people sometimes sleep less than others.
If you are prone to depression, Melatonin is not recommended for you. Also, because we do have sickle cell, one should be careful since some research suggests that Melatonin leads to blood clots.
On the plus side, Melatonin helps to establish a normal sleep/wake cycle, sync your body’s biorhythms and circadian rhythm, is an antioxidant, and helps with drug withdrawal.
So if you have tried everything else to help your insomnia and nothing has worked, or if you do not want to tack on another hardcore drug into your already medicated regimen, I would suggest giving Melatonin a try.
If anyone can explain why Sickle Cell warriors are insomniacs, please leave a comment/send me a message. I would love to understand this. Thank you.
Hi Vixen, how are you. I was traveling around the world, due to my work, and lost contact with Lamonte. Do you have any news about Nicosan and Xechem? Was Lamonte succesfull in its quest of reinventing the company to get Nicosan back on track ? Please send e-mail to eduardo.giribaldi@accenture.com
Thanks and Regards !!
My 3 year old daughter has been an insomniac ever since she was a tiny infant. We have chalked it up to being a preemie, or just being her energetic nature, but it is interesting to hear that this could be related to her SCD…a similar revelation, perhaps, to the post you had made regarding pica. As always, thanks for the information! Wish I knew the answer to "why" because our darling daughter is regularly up until the wee hours of the morning!!!
I agree with this post so much. Its definitely the same for me. I'm naturally a night owl, and often I tend to have pain more often at night then in the day. If I don't take something its very hard for me to go to sleep.
Hello,
I am a teacher of a seventh grader who has sickle cell anemia. I am looking for ways to support him the best I can. He has extreme difficulty staying awake in class. Would eating on healthy foods help? Any advice would be appreciated. He struggles academically; I want to create an optimal environment so he can succeed.
Nancy Woods7th grade teacher, sacramento, ca
Thanks for the information , i actually though my lack of sleep was because i was stressed and thinking too much , now i know better , i have by my bedside , newspapers , books a drink and of course my laptop.
Being a person with sickle cell, it’s good to know that this insomnia of mine isn’t as weird or as strange as I thought. I’ve always been a night person. I own my own graphic design and web marketing consult business, and I get most of my work done between the hours of 12 am to 4 am. It’s nice to know that I’m not alone.
my Son Carlos of 6 years recently suffered his 5th stroke 3 weeks ago which detailed a breathing disorder, intestinal obstruction due to gas, low HB, joint pains and bad chest. since then, sleep has not come easily.
after reading about Isomia and Sicklers on the Warriors, i gathered that the Isomnia could be a result of the pain killers used.
i tried exercises to ware him off such as walking, TV,swings and jumping.he has since been a better sleeper with at least 4 hours of sleep in the night. thanks to the warriors.
Exercising works!
I thought it was just me but good to know Im not alone
I have a son with sickle cell. He is 29 years old. He has been really suffering with many crises and pneumonia attacks each year over the last 4 years. He complains that the folic acid makes him sick. Are there young men out there with sickle cell that he could talk with so that you may share some of the things that you do to cope. I am sure there are many things that he would share with some one more familiar and closer to the actual situation (male and living with sickle cell) than me. Thanks
rgreen3@peoplepc.com
it feels nice not being the only scd insom person in the world XD, the problem is i am a tenth grader at a talented youth schoolso its a lot of work, insomnia is keeping me from the pace of my classmates, i tend to stay awake at exactly 8 pm till 6 am, and one time (never repeating) i took 2.5mg of my pain morphin and it didnt work, i felt really upset afterwards, anyways it started like 2 weeks ago and i never sleep and it started to affect my awareness, i tend to misspell some words, i cant read fluently, and i am so tired 24\7, my teachers dont get what insomnia is to a 16 year old with scd, it causes pain and weird pain threatns in my chest, i hope i can find a medi that helps my sleeping because i am not in a 24\7 vacation, and i am way too busy to deal with insmnia since i am skipping 11th .
I am a nurse & care for the elderly in a Nursing Home called Harmonee House. There is a very unique reason for the name but, I won’t go into detail as it is very lengthy. My husband was a victim of the dreaded Alzheimer’s Disease along with vascular dementia. He was a very strong, determined man, very set in his ways. He was just a little this side of brilliant as a building contractor in the construction of any kind of medical facilities IE; Hospitals, clinics, etc. Also built chemical laboratories. He loved traveling in RV’s after retiring. He was diagnosed with this disease quite awhile after I had suspected his problem because I could not get him to see his Doctor even though he had always been one for regular check ups, he was always told he was as healthy as anyone could be at his age. This was stamped in his mind & one thing he never forgot as long as he any bit of memory left . Over two years his doctor & I came up with every reason we could think of to get him into the clinic for tests. He had a traffic accident which warranted the need to be hospitalized (after walking away from many other traffic mishaps, driving without a DL, since it had been taken away from him, another huge fine, but fortunately, out of all the accidents (apprx. 20) no one else was hurt or, more importantly, killed) he was diagnosed & put on medication. He was so far advanced in the disease, the medication used for onset of the disease, did not help him. He had no hospital insurance, only medicare. At that time alot of procedures that were required, were not covered my medicare & our savings were depleted very rapidly. This is not the end of a very tragic story but, I will stop here. I have written this so people will be aware of the costs, mentally & financially, associated with this disease, that they maybe prepared should it ever, suddenly, pop up in their family. Make yourself aware of the signs & symptoms & get checked as quickly as possible if & when a sign is suspected. The medication for Alzheimer will help if it is started in early stages. It will make life so much easier for the unfortunate one & the care giver. Believe me, you will need all the help you can receive. I am a nurse & have taken care of patients with dementia & it is heartbreaking but, when it becomes a family member & you have to watch a mind deteriorate of a loved one, I can’t express enough how terrible this can be. Alzheimer’s Associations need all the help they can get, especially,financial.
This is so me! Ive been a nocturnal person for as long as I remember too but I know its not insomnia, because on some nights I fall asleep at the normal time. Im always mist active between the hours of 12-4am but this always affects me in the morning because I fall asleep during lectures. I have never tried to take sleeping pills, probably because I believe its not insomnia, and normal sedative medicines like cough syrups with codeine or tablets for cold and the likes do not make me fall asleep earlier.
Getting to sleep doesn’t have to be a struggle. Make sure you know what is keeping you from getting a good night’s rest and find a way to make your space more comfortable. You should be drifting off to sleep in no time.Moreover, explore has demonstrated the measure of Melatonin emitted by the body diminishes bit by bit as we age. This is the reason more seasoned individuals some of the time rest short of what others.
I have a 4year old with SCD and his sleep patterns are terrible. He’s up all night and sleeps until 1pm in the afternoon. When I give him a 1/2 of melatonin he’s out in 30 minutes. Any ideas on how I can get him to sleep?