Arnold-Chiari Malformation Support Group

Arnold-Chiari malformation, sometimes referred to as 'Chiari malformation' or ACM, is a congenital anomaly of the brain. Arnold-Chiari Malformation II occurs in almost all children born with both spina bifida and hydrocephalus, but ACM I is typically seen in children and adults without spina bifida.

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Is severe insomnia a typical symptom? Childbirth?

Does anyone have severe insomnia that is caused by your chiari malformation?? Is lack of deep sleep common when you have a cm?? Does anyone else experience constant arousals during sleep? Did anyone else have a chiari that started causing symptoms after childbirth?

I have had severe insomnia for a little over a year. It started slowly after my daughter was born. (At that point, I had never had an mri and didnt know I had a chiari 1 malformation. I had a natural eighteen hour birth!! Since then, I've read that a strenuous labor can make a malformation symptomatic? Has anyone experienced this??) I thought it was caused by a postpartum hormone imbalance or thyroid problem or anxiety, but now a year later, I have no anxiety and still have insomnia. A few months after it started I had an mri which showed a chiari malformation 1. I was like, wow! this is good- at least they found something. maybe this is the cause and I will finally find a solution. The dumb dr said it wasn't bothering me- its always been there and it wasnt causing my insomnia. (I've heard drs commonly say this in reference to cms and they are incorrect. Am I right?) Anyway, I didn't sleep for 6-9 days straight- no exaggeration. Since then, (I had a sleep study) I arouse every few minutes during sleep! And get practically NO deep sleep. My sleep is light, very restless, and mostly all dreams.

I also have a hormone imbalance, muscle and bone loss, etc. Also, after I was up for those days, everything got really loud- clocks, crying, etc- though I sleep somewhat now- it still continues! Is this a symptom of cm? I'm wondering if all my physical and skin issues are a result of the insomnia or of the cm?

Should I go to the chiari institute in ny? Do you think my insomnia may be caused by the chiari?

Thank you SO much! the insomnia is ruining my life and I have a beautiful young child. I really appreciate your help.

Replies

deleted_user
deleted_user

I get insomnia sometimes but usually I'm so tired I'm falling asleep during the day! I know that sleep apnea is frequently associated with Chiari, I'm not sure about the insomnia. Like you, all my symptoms started after childbirth. My daughter is 4 years old and I felt sick all the time after she was born-constant headaches, dizziness, fatigue..Before then, I was never sick!

Did they diagnose you with sleep apnea or anything else after the sleep study? If so, did they say what treatment you will receive? I would suggest going to a doctor with experience in Chiari. I also see a neurologist that acts like Chiari should be causing me no problems and it does! So I'm getting a second opinion so I can go to Cleveland Clinic and get a specialist in CM. It seems like they are the only ones who understand what we go through. What state are you in?
deleted_user
deleted_user

Yes, labor could definately be the cause of a CM1 or predisposition becoming a problem. There is no greater straining than giving birth.

What you describe is all too familiar.

Often endocrine issues become part of this due to the pressure put on pituitary and hypothalmus.

The Chiari Institute is an excellent facility in every way. You will get a thorough evaluation and detailed consultation. There are other places too that can do same, just stay away from your local neurologist's and neurosurgeons. This diagnosis requires expertise and someone who specializes in Chiari malformation and its related conditions.

So sorry for you! Can't even imagine trying to deal with this and baby too. Get assistance from anyone who offers! Then ask the rest to pitch in too.

In the interim try to avoid activities that cause you to strain, lifting heavy objects, pushing heavy grocery carts, grocery bags, moving furniture, lifting wet laundry, coughing, exercise that involves straining your neck and abdominals. No crying, operatic singing or yelling either (smack em instead) You get the idea. Even if it does not hurt while performing these tasks, it will later.

You caught this early and could very possibly resolve itself with proper treatment. You would still need to be careful forever though.

Best to you and enjoy that baby!
Mary
deleted_user
deleted_user

I also have insomnia, I have been on Ambien for 3 years, and I still dont sleep thru the night! I was considering the Chiari institute in NY but after reading their websitec carefully, they dont participate in most insurances, and we cant afford any high out of pocket expenses.
deleted_user
deleted_user

Jen, have you had a sleep study? It would be good for you to have one, and ask the sleep doc specifically to look for central apnea. People commonly have a combination of both, central and peripheral. If it comes out central at all, you probably have brainstem compression. Apnea is one of the red flag sx for BS compression.

What state do you live in? Perhaps there is an expert closer to you, tho if they are out of state, it's likely they also will be out of network for your insurance. It is ALWAYS best to seek a CM expert rather than rely on the local guy. You need to see a guy who is fulltime focused on CM; who does CM surgeries almost every day; who participates in research, studies and conferences; who keeps abreast of the new findings in CM and is active with other CM doctors in order to learn the best way to deal with things. Local docs usually do a "one size fits all" approach to CM surgery, and that sometimes is okay for someone with a mild, straightforward case. Many people have more complex cases, however and as "noneareleft" wrote above, it's best to avoid them.

Virginia
PS, I also have apnea, and after a sleep study, my doc gave me Nortriptyline and it's an awesome drug! It doesn't make you feel doped up or drowsy or loopy. And it really helps you stay to sleep.

Ambien is such a scary medication due to the side effects of hallucinations and nightmares. You perhaps should try something else if the Ambien isn't working??

Virginia
deleted_user
deleted_user

My daughter goes through periods of insomnia. She
is going to a sleep specialist on the 22nd, her ped rehab referred her for a sleep study bc he feels it is making her sx worse.
deleted_user
deleted_user

My son is seeing a neuro-surg next week and I will see if she mentions sending him for a sleep study. Are the Chiari symptoms different in kids than in adults? WE tried Melatonin with him, and it didnt work at all.
deleted_user
deleted_user

I couldnt tell you the last time I slept through a night...I do think it is associate with CM