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Sickle Cell and Insomnia

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.

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Sickle Cell Warrior

Sickle Cell Warrior

Tosin is dedicated to perpetuating healthy and positive messages about sickle cell. Although sickle cell is a subject often taboo in the communities this condition is most prevalent, Tosin's message is that sickle cell is not something to be ashamed of and you can live a rich and fulfilling life with sickle cell. Sickle cell warriors are the most amazing people in the world, with a great fortitude for compassion, willpower and strength.

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20 Comments

  1. Eduardo from Brasil
    Eduardo from Brasil February 27, 13:58

    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 !!

  2. Becky
    Becky February 27, 18:50

    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!!!

  3. Stubborn Diva
    Stubborn Diva February 27, 19:27

    OMG! I just chucked it up to my personality. Good to know.

  4. Nydia
    Nydia March 05, 00:25

    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.

  5. Nancy Woods
    Nancy Woods October 09, 08:54

    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

  6. Sickle Cell Warrior
    Sickle Cell Warrior Author October 10, 13:03

    @Ms. Woods, Thank you for being a teacher for starters, and especially trying to look out for your student. Managing sickle cell through school can be quite difficult, and I’m sure you’ve noticed that your student has missed a few classes due to sickle cell crises and pain.

    The first proponent of sickle cell is anemia. This means that we are naturally tired, almost all the time. With low blood levels, regardless of how much sleep you get, your body is still functioning at a low place, and we are prone to fatigue and tiredness constantly. This is because the sickled red blood cells do not carry as much oxygen needed (they carry about 1-2 oxygen molecules per 8 of regular red blood cells). This puts your non-essential organs in an oxygen starvation mode, which leads to almost a hibernation state, to reduce the metabolic demand on the body, since the supply of oxygen and nutrients is so low. So an 8 hour school day can be arduous…

    Iron will not help, because this actually puts people with sickle cell at risk for iron overload. The only solution to chronic anemia is frequent blood transfusions; and this comes with a whole plethora of complications.

    Many people with sickle cell have really bad insomnia, and this may also be a factor. I myself sleep through the day and am awake all night, sometimes up until 4 in the morning. I can’t imagine going to school with only 3 hours of sleep under one’s belt. Another thing could be that he actually has to take some pain meds in order to come to school due to the pain, and narcotics can make one sleepy….

    Your suggestion about healthy eating is a good one, and this will help somewhat, because a low fat diet prevents atherosclerosis. This is the buildup of fatty deposits and plaque around the veins and arteries which would narrow the circulatory system, and so when sickled cells clump up, it easily becomes a crises. Also, eating foods rich in thiocyanate can help to prevent sickling ie root veggies, turnips, yams, etc.. Foods rich in folate can help to increase the blood count…ie green leafy vegetables.

    You could also suggest him to take Vit B complex, since this helps with energy and alertness. He should already be taking daily Folic acid.

    Another glaring fact is that your student might be acting like all other teenagers. Chances are he’s on the computer until the wee hours of the morning. Recommend to the parents trying an OTC sleep aid, like Melatonin. Taken 30 minutes before bed, it helps to stimulate the sleep process, and yet has no groggy after effects the next day. He should get at least 7-8 hours or more.

    I would suggest you giving him more homework and less classroom work. This way, he can stay on the same level as his peers, but do it at his own pace; when he’s not in pain, or excessively tired. That way if he does miss out on stuff, he can catch up easier. Also, if he’s bright enough, you can have him ahead of the lesson plans, by just a few weeks, so that when he does fall behind from being sick, he won’t be too far behind his peers.

    I will throw this question up on the Facebook page to see what other suggestions Parents of kids with sickle cell might have. You can visit http://facebook.com/sicklecellwarriors to see the dialogue.
    Let me know if you have any other questions.

  7. Sickle Cell Warrior
    Sickle Cell Warrior Author October 11, 22:44

    @Nancy, there are many comments on the FB page. I hope you get a chance to check it out. You have to scroll down to find the post though….

  8. bukola udaya
    bukola udaya October 14, 18:09

    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.

  9. Adedoyin
    Adedoyin November 10, 04:39

    Hi,
    Am a sickle and am 31 years old. I read about all this things in your blog and it amazes me on how lucky I am. I cant remember when, where or how, but I dont have crises bouts again. Most of my attacks now are malaria based and common colds which have stopped since early this year. Am as strong as anything, and my collegues at work marvel at what am capable of doing considering my medical history. I’ve had so many sicklers like me asking for advice unfortunately I have none I can give. I’m sort of a rebel when I was young in the sense that I only take drugs when I feel the first sign on crises coming my way. I hate drug so much.I dont take folic acid, not Bco or any supplement, but when I feel a little bit tired I pop in some PCM’s and that all it takes to get me back on track. Before I started on my full time job am a bit of a nightowl, and I do most of my thinking and reading in the night. I watch an average of 4 films in a night and read a total of 4 bestsellers in a week although I do call myself lazy. But since I work in an office now, I dont have that luxury again. I eat my dinner by 8.00pm and on my bed by 9.00pm. I did a lot of self programmng and it worked. Am programmed to sleep off by 10pm and wake up 5am and its been like that since. No drug induced sleep. I swim, skip sometimes when I feel like my tummy is protuding. Am still weighing my options on sky-diving one day, but I’ve learnt a lot about myself along the line. Being a rebel, I’ve treaded on near death experiences and gotten burnt so many tims, but on the long run I learn to make a mentel checklist of what I can do and what I won’t touch even with a 10ft pole. With all this all am saying is that you need to learn to know yourself very well, dont dwell on regrets and self pity, discipline your body and you are on the road to crises free life. If drugs works for you stick to that, but dont rely on it so much. I pray that you all out there will experience the freedom I have now from crises and drugs.

  10. DeMon
    DeMon November 14, 12:42

    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.

  11. shakirah
    shakirah December 23, 13:04

    I thought I was suffering alone! I think I am about to have a crisis. I try keeping my mind clear but my biggest fear is hurting my family. I know this hurts them to see me in pain. Thank god I found this site! Hello friends

  12. sola
    sola January 03, 19:58

    I have googled the word insomnia several times thinking that I am the only person who have sleepless nights. I just tried to search for “insomnia and sickle cell” and your website came up 1st.
    I now understand myself better, I sleep around 10/11pm and will FOR SURE wake by 2/3am staring at the roof. I make better use of these hours preparing for the next day(I’m a perfectionist anyway) and reading or browsing. I take piriton as if it were my folic acid.
    I’m so grateful I found this link! Good job,guys.

  13. Rita magezi
    Rita magezi September 09, 22:04

    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!

  14. Devon
    Devon April 08, 23:01

    I thought it was just me but good to know Im not alone

  15. Tanjila B.
    Tanjila B. May 16, 10:56

    Hello all! I also suffer from insomnia. My fiance has been a huge support through it all. I have not had a pain crisis in 2 years this June; however, I have the hardest time falling asleep. I have tried Ambien, Benadryl, Melatonin…you name it I have tried it. I am very thankful that I am crises free. My fiance and I have started walking on a daily basis. This seems to help me rest in the evenings. I have always been more productive in the afternoon/evening. From noon until about 3 am I am a live wire. Early morning 5am to 9am are not on my list of favorites. If I stay awake all night I am ok until about 6 or 7am, then I crash. It is great to know that I am not alone in the sleep battle. It is difficult considering I work a 8 to 4:30 schedule 🙁

  16. Sickle Cell Warrior
    Sickle Cell Warrior Author June 03, 16:08

    @Tanjila…this is probably the hardest thing to deal with! I can’t sleep at night and I have a 7-3.30 job too! Wish it was that easy to address.

  17. Rosalyn Green
    Rosalyn Green May 10, 10:32

    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

  18. Huda Baziz
    Huda Baziz October 10, 16:02

    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 .

  19. Hugo
    Hugo October 11, 23:33

    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.

  20. Raquelle
    Raquelle August 18, 07:00

    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.

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