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This is Bizarre!

248 Views 4 Replies 4 Participants Last post by  Jenkay
Hang in there with me while I try to explain this...

Those of you who know me know I've been pretty sick for the past three years. It is very, very rare for me to have a day with energy. Typically if I push through my daily fatigue without resting I end up with a migraine or seizure event, so I rest.

I've been on prednisone the past three years and this past year my dose has been 8 mg. I tried to go to 7 mg at the end of August but it was a disaster and after 5 weeks I went up and tapered back down to 8.

Next week I'm going in the hospital for a seizure study for a couple of days so my doc thought we'd pull the prednisone down to 7 which usually makes the events kick in. So last Sunday I went down to 7 and right away things were bad (it usually take longer), I was afraid I was going to miss Halloween and kid activities this week so I went back to 8 mg on Tuesday.

Well, for the past four days I have had a bizarre amount of energy, like from 8am till well after midnight, this is not like me at all (unless I'm on increase prednisone)!!! Usually if I stay up till 11 I'm in bed most of the next day. I actually checked my new prednisone script to make sure they were the right dose tablets, I feel like I'm on more than 8 mgs. It is so weird. I went back to 7 mg yesterday (Friday) to get ready for my hospital visit Monday but I did more today than I did in the entire month of September.

Maybe this doesn't sound that weird but it has been more than a year since I've had days like this. I did start taking a new multivitamin about 4-5 weeks ago that has a large amount of B vitamins, but I wouldn't think it would have results like this???

It is great to have some energy. I definitely don't feel like I'm going to have one of my seizure events that they are hoping for next week but we'll see. They specifically scheduled for Nov. when these events are bad. There goes a $500 co-pay.

I just had to share this because it seems so strange to me.

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Hi Jen,

This sounds like the reverse of murphy's law (anything that can go wrong will go wrong at the most inconvenient moment).;)

It is a well known phenomenen, especially with small sick children (but doctor his temp was 104 at home etc). Very frustrating for you in terms of the upcoming study:mad:. Still, enjoy these days as long as it lasts:wink2: as unfortunatly you'll probably return to 'normal' for you sooner than later.


If you're feeling well and not having any seizure events, maybe you will want to postpone the hospital stay until later? Ideally this quick spurt of energy and health will last a long time, but unfortunately usually it doesn't. :mad: Postponing it until you are more likely to have symptoms might be overall for the best, pocketwise and for documentation and ultimately figuring out how to best help you with it. I'd certainly ask your doctor about it before going in....

Gosh, I might need to start taking some strong vitamins myself! I would also be wondering if they gave me some 5, 10 or 20 mg prednisone pills by accident! Whatever it is, I hope it lasts a long time for you.
I am glad you found some energy take advantage of it while you have it and enjoy. I am sorry you have had it so bad. It sounds like you were do some energy and fun time. If you have found the source of energy for us with lupus in a vit. it would be nice to share the vits. lol. Most of us would be willing to pay you lol. I don't know you and we have never chatted but I couldn't be happier for you!
More food for thought, I was talking with my mom this morning and sharing this story with her and right away she had a thought (mothers always do :) )

She asked, what is the main sorce of vitamin b12 and what are the symptoms of deficiency? Then she answered her own question and said, I think the main sorce is animal meat. And she was right. Well in addition to starting these new vitamins that have a lot of b12 in them about the same time I started increasing my meat intake from 1-2 meat items a week to 3 a day (I've been having egg whites with breakfast and sometimes a small piece of meat and then 2-3 oz of meat at lunch and dinner with some carbs and veggies or fruit). I had increased my meat intake due to something my mother had read and I really had not been getting enough protein.

There are many symptoms of b12 deficiency but some of the most common are neurological symptoms and migraines. So I'm going to ask my neurologist about this tomorrow. I'm going to keep my appointment for my inpatient stay as it takes so long to get, and I stopped my vitamins yesterday just until I get back home. I'll let you know what happens.

As for the vitamins I've been taking they are by Andrew xxx. (He is sometimes on HSN on TV). I originally started taking his calcium supplements because my doc wanted me on calcium and the couple of supplements I had tried really didn't agree with my system, Andrew claimed his were different and he was right, his didn't have any side effect so I thought I'd switch my multi vitamin from a generic store brand to his (he has several, I did a very basic one "Essential One Multi-Vitamin-Mineral.) It has 1600% of the RDA amount of b12.

I do have to say that with the increased energy I notice a little increased irritablity at times so maybe taking one of these every other day would be better. I'm going to ask my doc.

Well, I think that is enought from me for now.
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