Sleep Disorder Caused by Brain Malformation

Sleep Disorder, health, malformation

A disease on the rise. A congenital defect known as the Arnold-Chiari malformation, which often is not discovered until a person is in their late 20s, causes severe pain and insomnia. Simultaneous disorders are usually present in a person with this illness. These conditions are scoliosis, degenerative disk disease, syringomyelia, cervicalgia, arachnoiditis and connective tissue disorders. The Arnold-Chiari malformation is characterized by herniation of the cerebellar tonsils beyond the skull’s foramen magnum and into the spinal canal causing compromised cerebrospinal fluid and a “myriad of symptoms,” states the Mayfield Chiari Center. Sleep disorders can be caused by this brain malformation. Intracranial surgery is the only known treatment to correct the defect in part, but the neurological damage from this progressive illness is often said to be permanent.

The greatest problem facing chiari sufferers, debatably, is timely diagnosis. People often suffer for many years due to this brain malformation before a correct diagnosis is made. Misdiagnoses or “differential diagnoses” include, but are not limited to, fibromyalgia, multiple sclerosis, chronic fatigue syndrome, intracranial hypertension and a spinal cord tumor.

Sleep apnea has been repeatedly shown to cause sleep disturbances and respiratory complications. This is a potentially fatal condition that often requires a breathing machine to maintain oxygen levels. Because of increased MRI testing in recent years, the arnold chiari malformation is increasingly being diagnosed in people with chronic pain, sleep apnea, and spinal cord cysts called syringomyelia. The incidence rate of chiari type one is somewhere between one in 1,000 and one in 5,000 people; what used to be rare is now considered uncommon. Although awareness of this condition is spreading, children and adults can die unexpectedly if treatment is postponed.

There are four other defined forms of chiari, with varying degrees of herniation and displacement, including a controversial form, known as chiari zero, where there is no herniation but other abnormalities that cause the same symptoms. The chiari zero diagnosis was established in 1998 by Dr. Jerry Oakes and his research team, and is described in great detail on the CSF Foundation’s website (an unbiased website composed of the research findings from several teams, doctors, and surgeons across the globe). Though paralysis, muscle wasting, and chronic pain are symptoms of this condition, sleep disorders caused by this brain malformation are one of the signs that can be overlooked by both patient and doctor. The specialists at the Mayfield Chiari Center say anyone diagnosed with chiari should undergo sleep studies.

Emma Brotherhood of Coalville, England is a chiari sufferer who speaks about this congenital condition in Leicestermercury. She claims the pain can be so bad at times, she feels like smashing her skull into a wall or drilling a hole into the skull to relieve pressure. She describes her head symptoms as a “migraine on steroids.” Emma states how being connected with people in support groups is comforting, but what scares her are the many deaths that are reported in these groups.

Chiari itself can be fatal from the progressive trauma to the brain stem. This is described in Neurological Science titled under “Treatment of Chiari Malformation: Who when and how.” Suicides have also been reported from within these support groups due to the severe pain association and failed treatment plans. These are expected to diminish on part due to a growing number of physicians who fully understand chiari its associated illnesses.

Another fatal outcome of this condition and sleep disorders in general, is sleepiness. The National Sleep Foundation’s poll in 2005 indicates 37 percent and 103 million people report falling asleep at the wheel, while even more report driving while feeling drowsy. In 2009, Mike M. Ahlers with CNN reported a Boston trolley crash ended in the fatality of the driver who the National Safety Board ruled, “fell into a micro-sleep just prior to the crash.” Sleep disorders in general and sleep disorders caused by chiari brain malformation, should be taken very seriously as drowsiness has shown to be a threat to many lives.

The two types of sleep apnea conditions that can affect both chiari patients and the general public are obstructive apnea and central sleep apnea. “Central sleep apnea starts in the brain, causing a problem with signals going to the muscles controlling breathing,” states the Mayo Clinic Staff. In obstructive sleep apnea there is a physical blockage or hindrance of air through the passageway. Both types have the potential to cause damaging effects on the body and even death.

Other sleep conditions have also been reported in chiari and syringomyelia patients. Syringomyelia is commonly associated with chiari patients but can also be present on its own. Syringomyelia is when a progressive cavity in the spinal canal forms, causing a range of symptoms. Sources from the chiari support group list nocturia, sleep walking, chronic nightmares, trouble falling asleep, and trouble reaching deep sleep as part of their sleep disorder. Many sufferers report having high adrenal gland activity that causes them to lose sleep days on end.

In addition to sleep disorders, cardiovascular illnesses have been reported with chiari malformation. Postural orthostatic tachycardia syndrome (POTS) is on that list. Medical journals consider POTS an autonomic dysfunction. It can cause symptoms ranging from tremor to fainting spells, reports a study from AK Agarwal, R. Garg, and P. Sarkar, from the BMJ Postgraduate Medical Journal. This is a serious condition patients complain about with signs of a resting heart rate above 90 beats per minute and rapidly fluctuating blood pressure upon standing.

Initially being found only in autopsy, chiari poses a challenge for neurosurgeons worldwide. Though not all forms of insomnia are caused by a neurological disease, some sleep disorders are caused by the chiari brain malformation. Top research is currently being done at UCLA, the University of Miami, Duke University and the Chiari Institute in New York. Furthermore, an act called the Ehrick Garion’s Act is an awareness bill created to advocate for people with chiari malformation and their families. Named after two boys who died from chiari, the act is intended to bring about much needed awareness, education and research to avoid needless deaths.


By Lindsey Alexander


Ehrick Garions Act
CSF Foundation
Mayfield Chiari Clinic
Leicester Mercury

32 Responses to "Sleep Disorder Caused by Brain Malformation"

  1. Ms. J   August 27, 2017 at 3:38 am

    I’m 25 and I’m scared sh*tless. CM has taken over my life. Even though I fight to be happy everyday.

    I don’t have insurance anymore because I have such a hard time being able to work. There’s days where my legs feel heavy and then BAMM I can’t walk for hours cause I can’t feel my legs. I’ve literally fallen more times then I can count because my legs stopped working for me.

    I was diagnosed 2 years ago. And the neurologist told me that it’s so bad he didn’t understand why my past neurologist and spine doctors didn’t find this early.

    I’m scared cause the doctor told me that I’ll most likely be paralyzed or die by the time I’m 30 if I don’t get the surgery. I’m 25, that’s 5 years away. I’m so scared. But I have to hide it daily.

    No one around me understand it or what I deal with on a daily basis.

    I can’t cry cause if I do I can’t breathe, and then my head starts to hurts and it just gets worse and worse.

    I can’t even live on my own. I have to have someone around constantly to help me and make sure I’m ok, you know in case the lights upstairs goes out and I black out and convulse. And if no one can be around me I am designated to my bed, only allowed to get up if I absolutely have too.

    Sleep is something I rarely get. Like right now. I’m literally 2 hours away from being up an entire 24 hours. Which I most likely won’t go to sleep until it’s night or I’ll end up staying up. Longest I’ve stayed awake cause of my CM is 3 almost 4 days. And believe me after 72 hours of no sleep, you hallucinate. Oh boy is that horrible mixed with CM. When I finally fell asleep, I slept for 3 hours. Then stayed up for 2 more days.

    I can’t work, I have to be “monitored”. And everyone’s right. Cm cause other symptoms. I have a heart condition because of CM.

    And before I was diagnosed, I went to a chiropractor for 2 years, then physical therapy for 2 more, then 3 faucet injections which are epidurals if my memory serves correct.

    I forget how to swallow anything randomly. My limbs twitch. Like full on spasm. Legs too. It’s a painful tingle, like needles jabbing me over and over.

    Migraines from hell that last days on end. Longest was about a week. Feeling like I just got stabbed in a random part of my body. Tonight is the arch of my right foot. Very painful.

    This condition is rather serious. I’ve spoken to nurses and doctors who haven’t even heard of CM.

    I look for stuff on CAM randomly. Tonight I was seeing if anyone had good ideas on how to fall asleep when you feel like you can’t.

    I’m sorry that this comment is all over the place. I get rather spacy and tend to vent.

    My memory is going too.

    Anyone have any tips on being able to fall asleep with CM??

    • Aimes   August 27, 2017 at 5:36 am

      Jorie Wyatt, you need to go out of state to a Chiari top specialist. If you want surgery and these are your symptoms and you have Chiari, they will do decompression surgery on you. They don’t wait till you are paralyzed or dead. Just know surgery is not a cure and you could be better, worse, or the same after surgery. Epidural injections are generally bad especially if not done under fluoroscopic procedure. They can cause spinal leaks and arachnoiditis. Also those with Chiari should never see a chiropractor except I hear there are a few or specialize in special treatments for those with Chiari but mostly chiropractic work is just taking a huge risk. It could even cause internal decapitation. If you have EDS, Chiropractic won’t work because your vertebrae will just keep slipping back out of place anyway. To sleep, you either need adequate pain management, adequate sleep management, you do need a sleep apnea test, and CBD oil from hemp from a valid resource can be very beneficial to us for sleep. From hemp is legal in all 50 states, no THC, and cost starts at $40 online. If you are in a legal medical marijuana state, that’s the best thing for your pain and sleep. I wish you well. I have Chiari very symptomatic, craniocervical instability very symptomatic, tarlov cyst disease eroding sacral bone and compressing cord nerves obviously very symptomatic, chronic migraine, occipital neuralgia, Ehlers-Danlos syndrome, dysautonomia, complex immune deficiency, autoimmune disease, degenerative disc disease, many genetic abnormalities, too many allergies to food and medicine, and much more unfortunately but too long to list here. I understand your pain and symptoms. I’m very sorry. You need to get insurance. Go to healthcaremarketplace while it is still there and sign up with limited income Medicaid will pay your premiums or you might end up with Medicaid. Get a lawyer and fight for disability, Chiari counts, and a lawyer will make it faster and worth the percentage they take in the end not the beginning, then you can work toward getting Medicare which will allow you to go out of state. Good luck.

    • Aimes   August 27, 2017 at 5:38 am

      Sorry that was addressed to wrong person, supposed to be to Ms. J.

  2. Genivieve Daly   March 2, 2017 at 1:50 am

    I was diagnosed with ACM almost 10 plus years ago I decided on this Retreat because I was in so much pain and was not able to move my right arm I am happy that I had the surgery I had decompression done and then a lumbar shunt was placed. This has been a very hard road I still suffer from headaches everyday I cannot fall asleep it’s very difficult and I cannot stay asleep it is awful I have both types of sleep apnea Central sleep apnea Plus sleep apnea from my tongu sleep apnea from my tongue falling back to my throat. Driving is very dangerous I have already wrecked my car thank goodness I did not hurt anyone. I have someone drive me around if I have something to do. I feel for anyone that has this it is a forever problem…..Never free

  3. Aimes   June 20, 2016 at 10:27 am

    Person with ms you could have chiari also. Person in new York, go to Dr Greenfield instead. I have Chiari, Tarlov cyst disease, autoimmune disease, immune deficiency, autonomic orthostatic hypotension, sphincter of oddi dysfunction, chronic migraine, occipital neuralgia, anxiety, etc. It sucks. Doctors don’t know what to do with me cause all the conditions and all the medicine allergies. I am a good person with a life and family who needs me. Don’t give up on me so I don’t give up on me.

  4. Krista Cook   March 3, 2016 at 7:33 pm

    I am 40yrs old just diagnosed with MS and yet wonder if there is still something more wrong with me. Thank you for the information

    • Nicole Gaudette   August 27, 2016 at 10:16 pm

      You should ask for a brain mri only way to see if u have a Chiari Malformation.

  5. Deb Maxwell   March 3, 2016 at 4:15 pm

    Great article….amazing information. One of the biggest and saddest things that I have found (being a mother of a person with Chiari, the sister of a person with Chiari and the Aunt of a person with Chiari) – living in upstate NY, we do not have the medical knowledge here. When referred to NY City to the Institute – did not have the correct insurance. Sad that a dollar sign is put on a human life.

  6. Jacqueline Rowe   March 3, 2016 at 8:19 am

    Thanks for a very informative article and shedding some light on a subject many doctors are still ignorant about. Frankly, it’s a good idea to print this article and give it to my doctor. I have not yet had decompression and I do suffer from insomnia. Many people do not understand how debilitating this disease is because on the outside you look fine. Benadryl has been my best friend at nights.

  7. Dorothy B   March 2, 2016 at 11:52 am

    With my new diagnosis of CM. I am ecstatic to come across this article. It gives quiet a bit of insight into what to expect. The article gave me more information than my doctor did.

  8. Jennifer   January 31, 2016 at 7:42 am

    Chiari is a malformation of the skull that pushed into the brain and causes crowding. The brain itself is not malformed.

  9. Sharon McCarthy   November 5, 2015 at 10:53 am

    Agree..this is definately one of the best articles on chiara. I had decompression surgery in july……Unfortunately has not helped with my troubles getting to sleep.

    • NikkiMaria   November 6, 2015 at 11:05 am

      I am up for days at a time. I use to take trazodone but I don’t like the way it makes me feel. Glad to see our disease gain recognition.

  10. chrissi   November 4, 2015 at 3:24 pm

    this is probably one of the best articles i have read on chiari. usually it is full of made up things and misleads people but can tell the person who wrote this actually took their time to learn and research this. thank you 🙂

  11. Emi   November 3, 2015 at 5:33 pm

    The description of POTS symptoms is not correct. A person with POTS can have a resting heart rate of 45 or 80. POTS is defined by a 30bpm increase of heart rate upon standing (or any other orthostatic change). Rapidly fluctuating blood pressure upon standing is not POTS–rapidly increasing heart rate is.

  12. Arthur M.   October 15, 2014 at 2:55 pm

    Following my chiari decompression surgery I had insomnia and still do almost 5 years later. The only thing that mg to work is 30mg of Temazepam nightly and then I can get about 5-6 hrs of mostly restful sleep. Now I’m in a fight with a new door to keep it. I’ve tried anti-depressents, trazadone but these don’t work. Any sugestions or comments from anyone with similar experience? Will the insomnia last all my life?

    • ellen   November 3, 2014 at 8:19 am

      Arthur, I have Chiari as well. Have you had a sleep study done? Post op, it was found that I had over 320 central apneas. Very, very dangerous! With a Avap, similar to a CPAP, thus has declined to only 2 per hour. I do take clonazepam and trazadone in order to sleep. Search for presentations regarding chiari,eds, sleep by dr. Alan pocinki. I hope you obtain resolution. I know this can be maddening!

  13. ~B-)endy~H~ (@luvenice_h)   June 18, 2014 at 3:50 am

    Thank-you for a good! article & including PoTS & connective tissue disorders, one of which is Ehlers Danlos Syndrome, I have these 2 diagnosed but it’s near impossible to get the correct testing to diagnose CM on the NHS when you have EDS – Hypermobility type, my kids have EDS-H too. EDS specialists are trying to get this changed but it could take years. I know several suffering as they are at the advanced stage & need a specialised fusion operation that’s in the USA & would need about $100k

  14. Evelyn Cale   April 26, 2014 at 2:58 am

    Thank you for sharing this very informative article about Chiari.. It’s also good to see people who suffer from it first hand comment here and share their experiences!

  15. SkyNZ   February 28, 2014 at 10:30 am

    Wow, one of the best articles on Chiari I have ever read! Very comprehensive and brilliant to see sleep disorders and Chiari in the same piece.

  16. Mamie Poole Brimmer   February 4, 2014 at 2:03 pm

    Thank you SO much for printing/posting this article! the Chiari Malformation World does not receive the coverage we need to help bring proper awareness to our cause!!! your site will be making rounds across the united states!!!
    great job with this story!!!

  17. Jorie Wyatt   February 3, 2014 at 1:50 pm

    This article is very helpful. I was diagnosed with Chiari at age 40. All my symptoms hit at once. I was decompressed in 2010, had CSF Leak surgery in 2012 and a VP Shunt places 2013. Some is better but I battle every day. Now I am recently faced with issues driving. I thought I was having a heart attack and went to the ER. They of course told me I wasn’t which is good but the problem persists. Every time I drive or sit for long periods. My heart races, I shake and become disoriented. I also have degenerative disk disease. I thought I was crazy but there is a definite pattern. This helped a lot. I have never had a deep sleep. I only get a couple hours of sleep a night and that’s a light sleep. I have printed this article and will be discussing possible sleep and heart issues with my surgeon next week at my appointment. I have forwarded this to family as this helps them understand more.

  18. Alicia   February 3, 2014 at 12:43 pm

    Our 2 year old daughter has chiari malformation type 1 . So glad to see this article 🙂

  19. Molessia   February 3, 2014 at 7:18 am

    Good article, I have it and it does take over and mess up my life daily. Always trying to keep positive and keep going. They say God gives us only what we can handle. So I try real hard to. I don’t like the disease word for it either, even though it does feel like it sometimes. I think they were trying to say more about the diseases you can aquire from having it. Its defiantly ok to be super defencive about cause it is such a life altering thing. God Bless

  20. Stacy C   February 3, 2014 at 5:10 am

    Leslie, you are right that it’s a defect but not everyone is born with it. I had IIH first which has caused
    Chiari…. and why does the word disease have to be such a bad thing with you. Not all diseases are contagious…Cancer comes to mind. And I seriously wouldn’t say ONLY A BIRTH DEFECT it makes it sound like you are minimizing what we have and there is nothing minimal about the head and neck pain that I endure almost every single day.

  21. Evelyn   February 3, 2014 at 5:09 am

    I haven’t jade a chance to read it yet but when I do I will be sure and give feed back in a positive way. Not scream at you 🙂

  22. Kristy Martinez   February 3, 2014 at 5:02 am

    I think this article was well written and explained alot about chiari malformation and how debilitating it can be to us chiarians! Thank You for writing and sharing this.

  23. Kim Ruiz   February 2, 2014 at 9:50 pm

    I posted earlier and it did not make it as a comment here. Chiari Malformation is NOT always a birth defect. My son acquired it.

  24. Lindsey Alexander   February 2, 2014 at 8:34 pm

    Everything is okay, Leslie. And yes, it is a birth defect. Let me give you the medline plus definition of disease however: an impairment of the normal state of the living animal or plant body or one of its parts that interrupts or modifies the performance of the vital functions, is typically manifested by distinguishing signs and symptoms, and is a response to environmental factors (as malnutrition, industrial hazards, or climate), to specific infective agents (as worms, bacteria, or viruses), to inherent defects of the organism (as genetic anomalies), or to combinations of these factors.

    Also, you can find support groups on facebook under Beyond the Measurement and Carion SM awareness (this one is a stand alone website as well as a facebook group).

    Don’t feel stressed. Things get better.

    Thank you for reading.

  25. Leslie   February 2, 2014 at 8:14 pm

    Get this right!! Its not a disease!!! Its a birth defect!! We (people with Chiari) are not sick!! We are born with it!! I’m a 16 year old girl who had the surgery at 15. Its people like you that write these articles that give us a bad name!! Get your facts straight before you say things like this. Make people understand that this is NOT a disease but ONLY A BIRTH DEFECT!!!!!!!! You need to learn the truth and THEN you write the truth!!

    • Mindi   February 3, 2014 at 8:20 am

      It is a birthdefect however a person can be born without it have a accident or impact of some kind to the head that can cause the brain to slip into the spinal cannel as well

      • Mindi   February 3, 2014 at 8:24 am



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