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I cannot sleep at all

Victronix

Senior Member
Messages
418
Location
California
B2 sounds pretty complicated, from the 'b2 I love you' thread. If things don't get better soon, I would consider dropping that one as well, just to simplify the sleep investigation.
 

dbkita

Senior Member
Messages
655
Sleep is so important I would try to wean off of virtually any supplement until you find the fulcrum. Especially B-vitamins, methylation support or things like the carnitine you are taking. That amount of carnitine you take alone would give me outright insomnia.
 

freshveggies

Senior Member
Messages
196
Thanks for your thoughts victronix. I took xanax last night and it helped. I am getting my md involved and starting on drugs. I have been here and tried it and didn't work in the past, but I hae to try it again. I am at my last straw and can't go on. They want me to go to Mayo Clinic. I guess I need an open mind as nothing I have been trying for 22 years has worked and I have gotten progressively worse. I actually thinkg the low sulfur diet the last 7 months has greatly iincreased the decline. Dr. RIch and Dr. Nathan don't even bother with individual snips and have a great success rate. I have had too many doctors with too many ideas and frankly I feel like I have not been card for very well. I am just not smart enought to figure this out on my own. Some of the diet and supplements could have been killing me. I just don't know. But I have to quit it all for now and hope I can get back some of what I have lost so at least I can start to live.
 

freshveggies

Senior Member
Messages
196
Sleep is so important I would try to wean off of virtually any supplement until you find the fulcrum. Especially B-vitamins, methylation support or things like the carnitine you are taking. That amount of carnitine you take alone would give me outright insomnia.

Thank you. I just wonder why I felt so good when I first started methylation then it all quit. Why is this so difficult. Maybe it is not that and it is truely a virus attaching me.
 

liquid sky

Senior Member
Messages
371
Just reading this thread makes me anxious. I have tried a lot of things for this DD, but not much has really helped and what helps one person makes another feel worse. I just can't do the all the constant calculating of different substances in food anymore. I do try to eat something green every day, fruits and whole grain products, yogurt and kefir. That sounds healthy, but it breaks a lot of dietary restrictions in this thread.

I'm a big believer in listening to your body. If you crave a certain food and it does not make you feel ill after eating it, that's enough for me. That does not include junk food/fast food. I very rarely eat out. I eat little meat/poultry/fish, but it is quality grass fed/organic when I do. I guess if I found a dietary restriction that REALLY helped me, I would be more inclined to go that way, but it's just not happened.

As far as supplements go, I've tried SO many of these too. I still take a few, but only magnesium and one OPC antioxidant has really made any noticeable difference for me. I was reading on a forum for autoimmune hepatitis (where your body attacks your liver), and they had to curtail use of as many medications and supplements as possible to lower the burden on the liver. With the problems PwME have with detox, I think that's a good idea for us too.

So sorry you still can't sleep because I don't think any relief is possible without some good sleep. I consider not sleeping a form of torture (it is, actually). I really think this has to be done in steps. First thing is to get some sleep. If one thing does not work, move on until you find something that gives you 6-8 hours of steady sleep. Nothing else can be solved if you cannot sleep. Best wishes to you.
 

freshveggies

Senior Member
Messages
196
Just reading this thread makes me anxious. I have tried a lot of things for this DD, but not much has really helped and what helps one person makes another feel worse. I just can't do the all the constant calculating of different substances in food anymore. I do try to eat something green every day, fruits and whole grain products, yogurt and kefir. That sounds healthy, but it breaks a lot of dietary restrictions in this thread.

I'm a big believer in listening to your body. If you crave a certain food and it does not make you feel ill after eating it, that's enough for me. That does not include junk food/fast food. I very rarely eat out. I eat little meat/poultry/fish, but it is quality grass fed/organic when I do. I guess if I found a dietary restriction that REALLY helped me, I would be more inclined to go that way, but it's just not happened.

As far as supplements go, I've tried SO many of these too. I still take a few, but only magnesium and one OPC antioxidant has really made any noticeable difference for me. I was reading on a forum for autoimmune hepatitis (where your body attacks your liver), and they had to curtail use of as many medications and supplements as possible to lower the burden on the liver. With the problems PwME have with detox, I think that's a good idea for us too.

So sorry you still can't sleep because I don't think any relief is possible without some good sleep. I consider not sleeping a form of torture (it is, actually). I really think this has to be done in steps. First thing is to get some sleep. If one thing does not work, move on until you find something that gives you 6-8 hours of steady sleep. Nothing else can be solved if you cannot sleep. Best wishes to you.


thanks. My husband got a hold of my doctor yesterday and he said we need to fix this right now, because this is how we broke people in war. He was in some form of armed forces. This is a rather new doctor and I had not told him all my problems. I was working with other docotrs for hormones and methylation. Too bad the last 3 who haved worked with me never heard me when I said I can't sleep at all. They just wouldn't address it and I kept thinking it would get better.
 

Ocean

Senior Member
Messages
1,178
Location
U.S.
I didn't see vitamin D on your list. Maybe I missed it. Vitamin D has made a tremendous difference in my sleep.
 

liquid sky

Senior Member
Messages
371
thanks. My husband got a hold of my doctor yesterday and he said we need to fix this right now, because this is how we broke people in war. He was in some form of armed forces. This is a rather new doctor and I had not told him all my problems. I was working with other docotrs for hormones and methylation. Too bad the last 3 who haved worked with me never heard me when I said I can't sleep at all. They just wouldn't address it and I kept thinking it would get better.

You're welcome. Glad you found a doctor that listens to you and a husband that cares. I hope you get some sleep soon. Then you can work on other things, but sleep comes first. Take care.
 

dbkita

Senior Member
Messages
655
Thank you. I just wonder why I felt so good when I first started methylation then it all quit. Why is this so difficult. Maybe it is not that and it is truely a virus attaching me.
Right now sleep should trump anything in importance. Some on here will quote start-up effects. Screw that. You need to sleep. So I like I said I would try divide and conquer. Worry about other aspects of your condition later. Hopefully your new doctor can best guide you in that respect.

In my own case, overmethylation for nearly two years drove me to a real sleep problems about 18 months in. I had no recourse but to go on Klonopin. Once I stopped overmethylating six months later, things got much better but I am now still in the process of digging out of the Klonopin (down to finally 0.4 mg per night) but that taper has been a pain in the *bleep* I never wish I had to deal with.
 

freshveggies

Senior Member
Messages
196
Right now sleep should trump anything in importance. Some on here will quote start-up effects. Screw that. You need to sleep. So I like I said I would try divide and conquer. Worry about other aspects of your condition later. Hopefully your new doctor can best guide you in that respect.

In my own case, overmethylation for nearly two years drove me to a real sleep problems about 18 months in. I had no recourse but to go on Klonopin. Once I stopped overmethylating six months later, things got much better but I am now still in the process of digging out of the Klonopin (down to finally 0.4 mg per night) but that taper has been a pain in the *bleep* I never wish I had to deal with.

Thanks. At this point, I am ready for the drugs. I hate detoxing, but I feel that lack of sleep would be my demise if I don't. Better sleep the last 2 nights on xanax. Dr. Wants me on trazadone. I will start at 100mg. My sleep problems started before the methylation supplements were even started. I so appreciate all your feedback.

Ocean. I am on 15,000 vitamin D. My last test was in the 30. I can't believe I let it get that low. I am mad at myself for listening to a doctor tell me that 46 was ok because she also looked at the 1, 25 level and they were in balance. I don't think I can believe that now.

this is a very good video lecture on Vit D.
 

anne_likes_red

Senior Member
Messages
1,103
freshveggies (hope this is helpful)
I have a CBS+- but opted not to alter my diet to cut down sulfur. I feel better eating sulfur veggies and plenty of good protein. I didn't use yucca or any of the yasko recommended strategies. I'm not sure if I have a suox mutation or not, and whether not having one might make a difference there?
Anyway, I have made a ton of progress in the past year or more, and I guess my point is that eating lots of sulfur doesn't seem to have held me back. If you feel better eating these things it could be a clue worth paying attention to?
I took plenty of mg, taurine and molyb (my hair tests showed a very low level) and that seemed to support a lot of the detoxification pathways I needed help in. Just my experience there....but I thought I'd weigh in because I have a CBS mutation like you.
Anne.
 

freshveggies

Senior Member
Messages
196
freshveggies (hope this is helpful)
I have a CBS+- but opted not to alter my diet to cut down sulfur. I feel better eating sulfur veggies and plenty of good protein. I didn't use yucca or any of the yasko recommended strategies. I'm not sure if I have a suox mutation or not, and whether not having one might make a difference there?
Anyway, I have made a ton of progress in the past year or more, and I guess my point is that eating lots of sulfur doesn't seem to have held me back. If you feel better eating these things it could be a clue worth paying attention to?
I took plenty of mg, taurine and molyb (my hair tests showed a very low level) and that seemed to support a lot of the detoxification pathways I needed help in. Just my experience there....but I thought I'd weigh in because I have a CBS mutation like you.
Anne.

Thank you, that does help. I am re-thinking this whole diet thing. Being low sulfur for 7 months could have been a disaster. These doctors are just too busy to really take an interest. I need to get to where I can rotate my foods and not stress so much. Are you doing any particular methylation protocol? Are you doing it on your own?
 

dbkita

Senior Member
Messages
655
Thanks. At this point, I am ready for the drugs. I hate detoxing, but I feel that lack of sleep would be my demise if I don't. Better sleep the last 2 nights on xanax. Dr. Wants me on trazadone. I will start at 100mg. My sleep problems started before the methylation supplements were even started. I so appreciate all your feedback.

Ocean. I am on 15,000 vitamin D. My last test was in the 30. I can't believe I let it get that low. I am mad at myself for listening to a doctor tell me that 46 was ok because she also looked at the 1, 25 level and they were in balance. I don't think I can believe that now.

this is a very good video lecture on Vit D.
What are your 1,25 levels now? 15000 IU vit D should push you way beyond 30 unless a lot of it is going into the 1,25 form (which is a good thing). Magnesium facilitates the conversion to 1,25 btw.
 

Shoesies

Senior Member
Anyone have any advice for someone who cannot sleep more than two hours? I go to sleep fine, I wake 2- 2 1/2 hours later and cannot sleep. I have tried benzos, GABA, ambien, baclofen, flexeril, suan zao ren freak I have tried it all. I have not slept more than 2 hours or so a night in over three months and I am afraid of what will happen if this persists. I have aged fifteen years in appearance and I feel horrible. This last relapse has been hell on earth. I am not anxious when I awake, my heart is not racing, I do not have racing thoughts...except for getting more pissed as the night progresses without sleep. HELP
 

freshveggies

Senior Member
Messages
196
@ dbkita---my last 25 hydroxy was 37 range 30-100 ng/ml---Done this Jan

I asked for the 1, 25 but they didn't run it. Last time I had it run was in Feb of 2012. 1, 25 was 45 range 18-72 pg/ml and 25 oH was 47 range was 30-100ng/ml

based on my lab last month with 25 oh hydroxy being 37 do you think I should stay at the high dose to get it up quickly?
 

anne_likes_red

Senior Member
Messages
1,103
Thank you, that does help. I am re-thinking this whole diet thing. Being low sulfur for 7 months could have been a disaster. These doctors are just too busy to really take an interest. I need to get to where I can rotate my foods and not stress so much. Are you doing any particular methylation protocol? Are you doing it on your own?

Hi again,
Apart from a low dose active B, and lots and lots of mg, I haven't really been doing a full methylation protocol since mid last year. I have neither of the MTHFR mutations so I was able to relax about that particular aspect of it. Still have both VDRs ++ and potential problems in the detox and COMT genes plus the CBS mutation, and a few others...
I am taking mitochondrial supplements - found them useful as soon as I tried them, and I have also responded really well to JKruses protocols for circadian and energy metabolism issues. I have an interested doctor here but he is not guiding me..just watching and monitoring what he can.
Probably best to PM me if you want to talk more about the specifics of anything mentioned above.
Anne.
 

dbkita

Senior Member
Messages
655
@ dbkita---my last 25 hydroxy was 37 range 30-100 ng/ml---Done this Jan

I asked for the 1, 25 but they didn't run it. Last time I had it run was in Feb of 2012. 1, 25 was 45 range 18-72 pg/ml and 25 oH was 47 range was 30-100ng/ml

based on my lab last month with 25 oh hydroxy being 37 do you think I should stay at the high dose to get it up quickly?
I am really not sure. It just worries me that on 15000 IU per day you are mucking around the bottom of the range in 25 oh and with probably at best a midrange 1,25.

Also note really high vit D (and vitamin A) can lower your blood sugar. I figured that out the hard way when I was on 50000IU vit D, 3 times per week. Each day I took the 50K dose I went into almost hypoglycemic shock until I explained what I was suffering to my doctor.
 

Ocean

Senior Member
Messages
1,178
Location
U.S.
Thanks. At this point, I am ready for the drugs. I hate detoxing, but I feel that lack of sleep would be my demise if I don't. Better sleep the last 2 nights on xanax. Dr. Wants me on trazadone. I will start at 100mg. My sleep problems started before the methylation supplements were even started. I so appreciate all your feedback.

Ocean. I am on 15,000 vitamin D. My last test was in the 30. I can't believe I let it get that low. I am mad at myself for listening to a doctor tell me that 46 was ok because she also looked at the 1, 25 level and they were in balance. I don't think I can believe that now.

this is a very good video lecture on Vit D.
My levels have been pretty low, as I have trouble tolerating too much supplementation, but it's been improving. I believe vit. d has helped my circadian rhythm quite a lot. I hope you will find some relief very soon. I think sleep is the part of my self care I guard most religiously after pacing.
 

freshveggies

Senior Member
Messages
196
I am really not sure. It just worries me that on 15000 IU per day you are mucking around the bottom of the range in 25 oh and with probably at best a midrange 1,25.

Also note really high vit D (and vitamin A) can lower your blood sugar. I figured that out the hard way when I was on 50000IU vit D, 3 times per week. Each day I took the 50K dose I went into almost hypoglycemic shock until I explained what I was suffering to my doctor.

Do you think a person should not supplement over 10,000 ius a day to get their levles up? I do have a Mercola tanning bed that I can use, but last winter it did not raise my levels at all. They stayed at 46.

No sleep last night on Trazodone. I started with 100mg then added 50. I got nice and relaxed, but didn't knock me out. I also think it is low hormones for me too. They are so hard to figure out. I have an idea for a poduct I think could be helpful. It is like a glucometer but would check progesterone and estradiol.
 

freshveggies

Senior Member
Messages
196
Doctor wants me on trazodone for a week. Said to take it one hour before bed. I see him tomorrow and maybe can get something else to help. I just can't go without sleep.