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Old 07-11-2007, 12:05 PM   #1
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Does this sleeping problem happen to you?

Hi, everyone. I was diagnosed with a B-12 deficiency last week after nine weeks of not knowing what the heck was wrong with me. Compared to othersí experiences, my diagnosis was pretty quick, but the last couple of months have been difficult. I am trying to remain hopeful that things will get better now that I have a diagnosis. I love hearing other peopleís experiences because it makes me feel less alone, and after feeling so bad for so long, I have a lot of compassion for everyone. My experience has taught me that 1) B-12 deficiency is not easy to diagnose, 2) you have to be your own advocate and 3) you need to have a doctor who listens to you and who is committed to finding the answers. Iím 48 years old and have been a vegan for the last three years. Because one of my first symptoms was a humming in my ears, I was diagnosed with viral vestibular neuritis, a disorder of the inner ear. As Iím sure everyone on this board has done, I spent many hours researching on the Internet. I accepted the diagnosis but wanted to be tested for other things because it didnít seem to entirely fit my symptoms. I realized after awhile that I was going to have to specifically ask my doctor to continue trying to find an alternative or additional diagnosis because she wasnít looking for answers unless I asked for specific tests. One day on the Inner Ear message board I read about B-12 deficiency and looked it up. Oh my gosh! It sounded like my symtoms: fatigue, weakness, twitching in my legs. Iíve also had other symptoms mentioned on this anemia board, including what I call electrical brain zaps. Iíve also had one migraine aura (but no migraine pain). Two weeks ago I went to my doctor with a list of test requests, including B-12 deficiency, and a miracle happened. My doctor was overbooked, so she referred me to one of her colleagues. I had been praying for weeks for intervention from above, and here it was! This doctor is an internist and specializes in womenís health. She took me on as a challenge, was excited to be able to assist me in finding an answer to my problems, and felt like my advocate immediately. I didnít feel alone in my struggle anymore! From the results of the bloodwork done that day, youíd think I was the healthiest person on earth. The only result that was off at all was the B-12. My reading was 329. I happen to be one of the ďluckyĒ 5-10% of people with a reading between 200 and 400 who has the symptoms. Iím definitely lucky in that this doctor knew that, just because my level wasnít under 200, I could still have B-12 deficiency. She started me on shots immediately. I canít exactly tell if theyíre working, though, because my sleeping is so messed up. Iíd love any input anyone can give me because this is very upsetting to me. From the beginning over two months ago, my body just wonít let me sleep more than six hours. I wake up feeling like I've had no sleep at all. The last two nights have been horrible with only four hours of sleep each night. Does anyone else have this problem? What happens is the very instant I fall asleep, my body wakes me up! My body inhales, coughs or twitches in some way, and I canít stay asleep! The last two nights I couldnít fall asleep until 4am, and I slept until my husband left for work at 8am. I finally took part of a Valium to get to sleep this morning. Iíve tried twice today to get back to sleep (heaven knows Iím tired enough), but both times I had a ridiculous gasp that woke me up right away, with a kind of sinking feeling. Iím having a sleep study tomorrow night, but does this happen to anyone else? Is it from the B-12 deficiency? What do you do about it?

 
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Old 07-11-2007, 12:55 PM   #2
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Re: Does this sleeping problem happen to you?

Welcome to the lucky few. I am just like you - one of the few who have horrible symptoms at a much higher level. GOOD NEWS it gets better. You are a vegan, which explains your low B12 completely. There are several things out there that you can eat and drink in order to get your daily requirements of B12. My daughter found this cold mocha drink that has nearly 100% of the daily requirement - a slim fast I think has 33% and then there is a soymilk that has 25%. Since you are low take more than you need in supplements until the numbers reach above 800. And if you can keep getting shots till then do so.

I have pernicious anemia so it doesn't matter how much I eat I will never absorb the vitamin. Lucky for me a lifetime of shots keeps me alive.

Regarding your time frame question - you’re in for a long haul. I am 13 months out and finally back to normal. The damage low b12 does to the body takes a long time to repair so be patient and always keep taking your B12 even when you feel better.

Sleeping - yes is an issue I personal got so bad that I crashed for 6-8 hours would be awake for maybe 2 then start the process all over. I still take a muscle relaxer every now and then to help me sleep - and to help me get out of bed. I still have muscle contractions, which makes my body very stiff and sore so the morning ritual is about 10-15 min of stretching before I can even sit up.

This site is great - it helped me thru this whole process.

Good luck

 
Old 07-11-2007, 06:15 PM   #3
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Re: Does this sleeping problem happen to you?

When my B12 level was 282, I had the same things you described - the migraine aura without the migraine and funny that you should mention it, but that waking up with a gasp thing in the middle of the night. I didn't associate that with B12, but it must;ve been that because those gasps are gone now that my B12 level is good again.

It took me a few months to feel better after starting the shots and taking multiple vitamins. The big thing to remember is that it takes awhile to get your supplies built back up. Don't stop the shots when you start to feel good - keep at it until your levels are steady for awhile.

And I've been told to eat potassium when trying to build up your B12 stores - it's supposed to help your body use the B12.

Hang in there!
Jill

 
Old 07-11-2007, 07:22 PM   #4
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Re: Does this sleeping problem happen to you?

Thanks so much for the responses. Believe me, I do plan to continue with the shots. After this week, my doctor wants me to take one shot a week for a month and then monthly shots after that, which from what I've read seems to be a typical schedule. Is that the schedule you're on? Do you take some other form of B-12 between shots? My doctor wants to see me again in a month, when I assume she'll retest my blood and reassess. What I'd really love is to be able to get back to work. Up to this point, it's been impossible to get up and get moving. Luckily my boss is very understanding and is open to any schedule I'd like to work out, including working from home part time for awhile if I need to. Do you guys work?

 
Old 07-12-2007, 10:42 AM   #5
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Re: Does this sleeping problem happen to you?

I give myself injections every two weeks. But there are times when I have to break it up and give 1/2 of the dose weekly. Generally they will wait 3 months before retesting - I was told that until your levels are stable they don't like taking your blood unless they have to.

I am self employed and yes I did continue working during the process. But let me tell you I kept some very strange hours. Lucky for me I have had a very long reputation with my clients so 95% of them understood. Not sure how I did it sometimes but somehow it got done. Alot of things that really were not that important was put off untill better days. It seemed like it took 2-3 more times the effort physically and mentally just to do the simple day to day things.

The mind fog clears first then the body starts to get better. But keep this in mind that while you are recovering rest, relaxation and slow but steady helps you get there faster. If you push yourself to hard trust me you will know it. When this happens you really set yourself back a bit so again remember slow and steady. If it really isn't that important (dusting etc) remember it will wait and don't stress over it.

Good days are ahead.

Last edited by IamUnique; 07-12-2007 at 10:43 AM. Reason: spelling - oops

 
Old 07-12-2007, 06:17 PM   #6
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Re: Does this sleeping problem happen to you?

Quote:
Originally Posted by IamUnique View Post
I still have muscle contractions, which makes my body very stiff and sore so the morning ritual is about 10-15 min of stretching before I can even sit up.

This site is great - it helped me thru this whole process.

Good luck
Wow, you have hit upon my problem exactly, I, too am sooo sore in the mornings, I did not realize that muscles contract during the night. I am on B12 shots for the rest of my life as well. I have only been taking them for 3 months, and last months number was only 412, so a ways to go.
Thanks for your info and insight!
Barbwest

 
Old 07-13-2007, 09:09 AM   #7
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Re: Does this sleeping problem happen to you?

BARB:

I am glad I could help. This problem was one of the first to arise and the Dr.s treated me with muscle relaxers for about 2 1/2 years. It was so bad that when I woke up my toes and feet curled so far towards the heals that it took 20+ min to get up and put my feet on the floor then they snapped back in place for about 15-20 steps. It was horrible and hurt like H***.

I found that when it's really bad I put a rolled up sleeping bag under my knees and sleep on my back this way. I don't know why but it does make it a bit more tolerable.

My muscles contract (continuous tightening) about 3-4 days prior to my shot and gets worse around PMS, stress and get this one (if there is a full moon). During the day when this happens it feels like I am walking thru mud and takes everything I have to move forward.

At 412 you do have a way to go. Something to look forward to: I really started feeling most like myself at 700 and now I am at 800ish and not 100% but darn close. Some of it I am sure is permanent and will continue for the rest of my life.

Good luck.

 
Old 07-13-2007, 11:38 AM   #8
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Re: Does this sleeping problem happen to you?

Quote:
Originally Posted by IamUnique View Post
BARB:

I am glad I could help. This problem was one of the first to arise and the Dr.s treated me with muscle relaxers for about 2 1/2 years. It was so bad that when I woke up my toes and feet curled so far towards the heals that it took 20+ min to get up and put my feet on the floor then they snapped back in place for about 15-20 steps. It was horrible and hurt like H***.

I found that when it's really bad I put a rolled up sleeping bag under my knees and sleep on my back this way. I don't know why but it does make it a bit more tolerable.

My muscles contract (continuous tightening) about 3-4 days prior to my shot and gets worse around PMS, stress and get this one (if there is a full moon). During the day when this happens it feels like I am walking thru mud and takes everything I have to move forward.

At 412 you do have a way to go. Something to look forward to: I really started feeling most like myself at 700 and now I am at 800ish and not 100% but darn close. Some of it I am sure is permanent and will continue for the rest of my life.

Good luck.
I have found that a pillow under my knees did relieve some pressure, but now I will try the sleeping bag trick. I too, did the muscle relaxer route for many years. Now take Tramadol in am to get everything relaxed enough to move. I am trying to taper off of those, but some days it is really hard to move.
I hope you feel better soon as well! Thanks for the help!

 
Old 07-14-2007, 06:50 AM   #9
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Re: Does this sleeping problem happen to you?

I have a question. I have IDA, my B-12 is 835 and Folate is at the high end also on the lab values. Since I became sick in the past 6 mths. (after the first 3) I began to have muscle spasms.

They happen in my neck everynight and extend to the nerve in the side of my face causing facial numbness as if you've been to the dentist. Also, my upper shoulders ache alot.

I did have a (brain) MRI for this because it is a symptom of MS and a Lupis test because it also shows up if you have that. I think somehow that it is related to IDA but don't know. I take a half of a Xanax at night, I have almost no problem in the day, until evening and it's always there. Of course the Doc's like to say that it is anxiety and tension headache, I have never had this before IDA. Does anyone have any info. on this??? FLFLOWERGIRL

I forgot to say that I have also had my heart checked with Echo and EKGx2, all normal.

Last edited by FLFLOWERGIRL; 07-14-2007 at 06:52 AM.

 
Old 07-17-2007, 11:58 AM   #10
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Re: Does this sleeping problem happen to you?

Pardon me for sounding stupid here but what is IDA?

 
Old 07-17-2007, 01:04 PM   #11
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Re: Does this sleeping problem happen to you?

IamUnique,

IDA is Iron Deficiency Anemia. FLFLOWERGIRL

 
Old 07-18-2007, 09:08 AM   #12
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Re: Does this sleeping problem happen to you?

Ah - now I know something new. Unfortunately I'm not much help to you since I have the B12 problem. But I have noticed however, that allot of the B12 symptoms match the iron anemia's so it wouldn't surprise me that you are having muscle spasms.

When my problem was bad I would wake up in the middle of the night with my shoulders to my hands PAINFULLY numb and asleep (I could move them so I know it was just nerve damage). Nothing helped so most of the time I laid there and cried for a couple hours till it passed. It started in the hands then as I got worse it moved all the way up to my shoulder, it had just started in my neck area when I finally got the diagnosis.

Good luck to you and I hope you feel better soon.

 
Old 07-19-2007, 09:44 AM   #13
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Re: Does this sleeping problem happen to you?

I thought I was the only one that had a problem sleeping like that. Since my B12 anemia got worse it's hard for me to fall asleep. When I am almost asleep my body (usually leg or an arm) will twitch or jerk and wake me up. When I finally do get to sleep I can only stay asleep for a few hours at the most no matter what. I take muscle relaxers (Zanaflex) due to back problems and my muscle spasms which really works well to help me get to sleep and my doctor says it has a very low chance of becoming addicted. Even if I take it I still have problems staying asleep. Good luck with it.

mel

 
Old 07-21-2007, 07:00 PM   #14
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Re: Does this sleeping problem happen to you?

Thank you for your information. I think that I will see a Neuro Doc. I'm so sick of going to doctors that I need a little break before I make an apt. FLFLOWERGIRL

 
Old 07-24-2007, 08:57 AM   #15
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Re: Does this sleeping problem happen to you?

Wow! Thank you all for discussing this issue. I have iron deficient anemia (HGB is up to 9) do to ????? The Dr's have told me that my B12 is fine. But after reading this I looked up my blood work and guess what B12's = 322. I have a horrible time every night and all day every time I stand up my feet are curled and painful. I thought I was developing arthritis. My back and neck seem to get worse each day. Sorry for all the complaining but I need to vent. My husband just does not understand. Now I will tell my doctors about B12 and start the sub-lingual. Thank you for being here.

 
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