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Does Anyone Get Insomia??

Posted: February 10th 2009

lorimar

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Hi, I guess I'm getting the hang of this forum stuff; It's great having all of you to compare notes with

I gets bouts  of terrible insomnia, I don't sleep for nights on end. I know when I have alot of pain it

makes sence why. Is this Mito related, does anyone know?? Nothing works, to help either. Just curious

Thanks Everyone....................Sleep Well......Lori:)
cellolover's picture

When I had a stretch with a

Submitted by cellolover on Wed, 02/11/2009 - 1:33pm.

When I had a stretch with a lot of pain I found it quite hard to sleep. However, in general I sleep okay. Sorry I'm not any help!
__________________

Rachel- I have abnormalities in Complex I,II, and V. I also married a wonderful man on June 5, 2010.

Lils mom's picture

Have you tryed taking

Submitted by Lils mom on Wed, 02/11/2009 - 4:59pm.

Have you tryed taking melitonin? It is a drug that the body naturally releases to tell you you are tired. You can buy it for about 6 dollars at any grociery store, or health food store. My daughter who is 5 has a sleep disorder and her doctor recommended this I tryed it for her and it didnt do a whole lot because she requires perscription meds for this but I tryed it and I fell right to sleep. Just a thought since it is not harmful at all!
__________________

Meredith wife to my wonderful Carlos

and mom to

Liliana 18months Leighs disease

and Triniti 5 Angelman Syndrome

lorimar's picture

Rachel, you are wonderful

Submitted by lorimar on Wed, 02/11/2009 - 7:29pm.

Rachel, you are wonderful help:) Please keep in touch, from reading some of your symptoms.We have a lot of the same ones.I'm now interested to see how much water I drink? You really should try that Smart water it taste great and has all the minerals they say we need.Do you eat protein bars? I must drink, over a liter of water? more maybe. I have a glass or bottle, with me all the time.....Just can't figure out why I'm tired all day, then can't sleep at night?Take Care...Lori:)
lorimar's picture

Thank-You, I will give the

Submitted by lorimar on Wed, 02/11/2009 - 10:14pm.

Thank-You, I will give the Melatonin a try. I have tried it in the past with no results;but like you say it's natural, so definitely worth another shot.Thank-You All for trying to help, we all know how important sleep is....God Bless..Lori:) Do you know what time of day to take it?
MotherWhimsey's picture

take it about 15 minutes

Submitted by MotherWhimsey on Fri, 02/13/2009 - 11:39pm.

take it about 15 minutes before you plan to go to sleep. it's been a wonder for us!
__________________

Courey mom to Aniyah, 4.5 and Linden, 20 mos. Linden has Mito complex III deficiency with slight deficiencies in complexes I and II. He is o2 and tube dependant.

www.lindenberriesandrosebuds.blogspot.com

LGlasbergen's picture

My daughter was hopsitalized

Submitted by LGlasbergen on Mon, 05/11/2009 - 11:46am.

My daughter was hopsitalized after suffering seizures, later suspected of having Mito, after testing, it's confirmed. She too, suffers with inability to sleep. In hospital it's easy to get days and nights mixed up when you're sadated for different tests. The Neurologist gave her Melitonin too. Some nights it helps, others are still hard to Leanna to fall asleep. I always thought she was thinking too much about something. If we ask questions concerning her health, she gets really worried and finds it hard to sleep. My husband couldn't sleep one night and took one of Leannas melitonin and had no problems sleeping. Maybe it's a mito thing, inablity to sleep regularly.

cellolover's picture

Hi, Lisa! Welcome to the

Submitted by cellolover on Mon, 05/11/2009 - 1:48pm.

Hi, Lisa! Welcome to the forum. I found the first months after my diagnosis that I couldn't look at health stuff in the evening or I would be up at night thinking about it. You are also right that it could be completely a mito thing.
__________________

Rachel- I have abnormalities in Complex I,II, and V. I also married a wonderful man on June 5, 2010.

lorimar's picture

Hi Lisa, Welcome to the

Submitted by lorimar on Tue, 05/12/2009 - 12:05pm.

Hi Lisa, Welcome to the forum:)I have a lot of trouble sleeping so I would guess it could be a mito thing. I just started trying Melatonin, It's hit or miss for me, meaning sometimes it helps sometimes it doesn't.I wish I had the answer sleep is so important............Lori:)

Lori, I too have a terrible

Submitted by desi dee on Tue, 05/12/2009 - 12:44pm.

Lori,

I too have a terrible time sleeping. But momma seems to have no trouble at all. She jerks alot during sleep and that will wake her but she's able to go right back to sleep easily.(Two with adult onset mito in the samehouse-alot in common but alot different also).

I've tried melatonin and valerian. Neither work for me. I know I worry too much and leg, back and neck pain keep me from sleep also. Momma's on sleepmeds, which I don't take but maybe should try. It does seem likea 'viscous circle' -not sleeping causes more pain, more pain keeps us from sleeping. It's very frustrating! Good luck in your sleep quest, and God Bless!

lorimar's picture

Hi Desi Dee, You are so

Submitted by lorimar on Tue, 05/12/2009 - 7:06pm.

Hi Desi Dee, You are so right about the vicious cycle , the pain does keep me awake, but sometimes I just lie awake for no reason (maybe worries?).My husband says I jerk in my sleep. The neurologist put me on Requip,my husband says I'm better on it. I just get tired of having a pill for everything, I guess I shouldn't complain if it helps. I keep trying good old fashion fresh air, hoping to get tired enough for sleep.......Good Luck..sweet dreams..Lori:)

I tried the melatonin with

Submitted by janice on Tue, 05/12/2009 - 7:29pm.

I tried the melatonin with no results also. I do have great results with the Amitryptyline at bedtime. I fall right asleep and wake up not groggy. Without it, sleep is only a dream. (ha) I have been told it is mito related. Eating before bed and taking a teaspoon of cornstarch in juice, extends the energy for sleep, which has helped me also. (and others)If i don't sleep.........LOOK OUT!