Chiari Malformation Community
Sleep problems (non-restorative sleep)
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Sleep problems (non-restorative sleep)

Hey everyone,

I am new to the site, hope everyone is well.

I was hoping to get some advice on how to cope with sleep problems and want to know if any other people suffer from a similar thing to me. I call it thing because I dont know what the problem is.

I underwent surgery April 2010 and have since recovered quite well, except for the sleep part. I do think that my sleep problem has something to do with my Chiari, but I dont think it is sleep apnea, coz I am not waking up gasping for air.

My problem is that when I wake up I dont feel refreshed, like I havent really slept, this problem has progressively got worse since 2007. It has come to a point where it is really bothering me and I need to proactively do something about it.

I think I have an issue with non-restorative sleep, can someone tell me if I am right? For spome strange reason I sleep perfect when I am taking antibiotics. Also when my I cant sleep my skin gets bad acne. Anyways that's my problem, hope to find some help, thanks everyone.

PS Has anyone used a med called xyrem to help with sleep? My NS has currently prescribed me with Lorazepam to help with sleep. Previous to that I have taking Tetralysal and Amoxycillin for my skin. The problem is with my sleep, if I sleep well then no acne! So desparate to solve my sleep problem.
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620923_tn?1393294254

  Hi and welcome to the Chiari forum.

  I am glad to see u know about sleep apnea, and I know how u feel...but outside of it not being sleep apnea it could also be the amount of oxygen that gets into ur blood stream.....

Have u had a sleep study or one to see if u had enuff oxygen in the bloodstream?

   I did, and I do not have sleep apnea, and I have enuff oxygen in my blood stream.....but no restorative sleep!!

U would think I ran a marathon or something the fatigue I have...and with my issues that is not even a possibility....so what else can it be...low levels of vitamins and minerals getting absorbed into our bloodstream.....

I have more testing coming up on that, and the only possible mineral not tested last time was my magnesium- but, I also have GERD which having excess acids  does not allow for for absorption of ne vitamin or mineral..so all should be checked.Below I mention several that we all should have tested regularly.

What Are Some Symptoms of Hypomagnesemia To Look For?

You may not have any symptoms, unless your blood test results show that your magnesium levels are significantly decreased.

Muscle weakness, confusion, and decreased reflexes with severely low blood magnesium levels.  You may also notice "jerky" movements, high blood pressure, and irregular heart rhythms with severely low blood magnesium levels.

What are the symptoms?
If your vitamin B12 deficiency is mild, you may not have symptoms or you may not notice them. Some people may think they are just the result of growing older. As the anemia gets worse, you may:

Feel weak, tired, and lightheaded.
Have pale skin.
Have a sore, red tongue or bleeding gums.
Feel sick to your stomach and lose weight.
Have diarrhea or constipation.
If the level of vitamin B12 stays low for a long time, it can damage your nerve cells. If this happens, you may have:

Numbness or tingling in your fingers and toes.
A poor sense of balance.
Depression.
Dementia, a loss of mental abilities.

Low Potassium Symptoms

Usually symptoms of low potassium are mild. At times the effects of low potassium can be vague. There may be more than one symptom involving the gastrointestinal (GI) tract, kidneys, muscles, heart, and nerves.

Weakness, tiredness, or cramping in arm or leg muscles, sometimes severe enough to cause inability to move arms or legs due to weakness (much like a paralysis)
Tingling or numbness
Nausea or vomiting
Abdominal cramping, bloating
Constipation
Palpitations (feeling your heart beat irregularly)
Passing large amounts of urine or feeling very thirsty most of the time
Fainting due to low blood pressure
Abnormal psychological behavior: depression, psychosis, delirium, confusion, or hallucinations.

Symptoms of Low Vitamin D Levels

As mentioned above, low vitamin D levels in the blood can lead to certain diseases and disorders. It has been observed that symptoms of low vitamin D level may not be significant to get noticed during the early stages itself. In most cases, this condition is detected when it gets severe and reversing it at that stage may be difficult. As most of the symptoms of vitamin D deficiency mimic other health problems, it may be left undetected for a long time. The following are some of the symptoms that are associated with low vitamin D levels.
Vitamin D deficiency can exist in two forms. One is the mild form, characterized by mild symptoms like loss of appetite, weight loss, diarrhea, insomnia, vision problems, and burning sensation in the mouth and the throat.
Severe vitamin D deficiency can develop symptoms like muscle pain, fatigue, depression, low immunity, hearing loss, low calcium levels and resultant weaker bones that are susceptible to fractures.
This vitamin deficiency may lead to rickets in children and osteomalacia in adults. Kids with rickets are often found to have soft bones in the legs and the skull. Most of the affected kids have curved legs.
Children with low vitamin D levels may also develop muscle cramps, seizures and breathing problems. Emergence of milk tooth may be delayed in them. Other symptoms of low vitamin D levels in kids include irritability and depression. In some rare cases, heart problems, like cardiomyopathy may also develop.
Adults with osteomalacia develop weakness and bone pain, especially in ribs, hips, pelvis, thighs and feet. They may find it difficult to walk or climb stairs. Most of them are found to have an unsteady walking pattern. In the long run, low vitamin D levels can contribute to the development of osteoporosis in adults.
It has been observed that the most common symptom of low vitamin D levels is musculoskeletal pain, which is felt as a deep throbbing in the limbs. Another apparent symptom is dental problems, including periodontal diseases, caused by insufficient supply of calcium to the teeth.
Those who have vitamin D deficiency are also believed to have the additional risk of developing some types of cancer like breast, colon and ovarian cancer.
As the immune system can also get affected by vitamin D deficiency, there are chances of contracting a number of other diseases. With a weak immune system, the overall health can be affected.
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Avatar_f_tn
I also have non-restorative sleep.  I've tried Lunesta (couldn't keep taking it due to VERY WEIRD and FRIGHTENING dreams), Ambian (puts my body to "sleep", but not my mind), and finally, Restoril. Restoril is the only one that shuts me down completely; however, I cannot take it for more than 3 nights in a row as I don't want to become dependent (it's a benzodiazapine, and therefore, highly addictive).  I am scheduled for a sleep study next week and a 24 hour EEG in the near future.  The sleep issue for me is one of the top 3 complaints I currently deal with on a daily basis....the other 2 being headache and hearing issues.  Good luck finding something that works for you...we're all very different in our presentation of Chiari symptoms, so what works for me may not work for anyone else.  Be persistant...and keep advocating for yourself. :)
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Avatar_m_tn
Thanks for your replies.

@actressmouse, please let me know how you do in your sleep study, as I am really interested in doing one myself. Also I guess you are taking the Restoril on and off? I am doing that with Lorazepam, I used to take Clonazepam, but after 8 months of taking it, it stopped working.

@selmaS, Are there any medicine, supplements you are taking to get some normalality in your sleep?
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620923_tn?1393294254

  I was RX'd diff sleep meds, they really did not help...so, I stopped those.

What I am trying to do is eat healthy, and go to sleep at a regular time each night to try to get my internal clock set in hopes that will help...and I am taking vitamin supplements and having my blood checked regularly to make sure  I am not low on nething essential and  nothing else is going on...such as my thyroid being active or inactive.

  "selma"
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Avatar_f_tn
Yes, I take it on and off....with more emphasis on the "off" as I really don't want to become dependent.  The weird thing is, sometimes I get really good results with it and sometimes I feel like it didn't even do anything...so maybe some resistance is building.  I will let you know how the study goes...thanks for bringing the sleep issues up to the forefront....it's nice to feel some validation!
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