Seizure Meds and Bone Loss

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itsjustme22

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:soap:I began taking seizure meds after having my first grand mal at age 18. In 2004 I began having stress fractures in my feet from just running/walking. After much testing I found out that I have osteoporosis and osteomylasia due to taking seizure meds for almost 20 years. They also found 3 back fractures. Did my back hurt? Yes, but so did a lot of other things, but I hate going to doctors.

Who knew? I read all the nasty side-effects listed on each new med I was put on. All they ever listed were things like liver and kidney problems, acne, weight gain, hair loss, etc. What a beautiful picture the manufactures paint for us, but it beats the alternative of having seizures. What has never been disclosed is that these drugs rob our bodies of the vitamins and minerals needed to maintain bone health.

NOTICE TO ALL TAKING SEIZURE MEDS!! Please contact your doctors and have a DEXA scan. If you are newly diagnosed please talk to your doctor about how much calcium and vitamin D you need to be taking to counteract the damage being done by your seizure meds. I am now fighting to try to build my bones back up while still taking seizure meds that are continuing to destroy them. Oh, the irony of it all! You have to keep a sense of humor or you end up curled up in a ball crying.
 
This is such a hot button issue right now--thank you!

Hi it'sjustme22--i just posted a new thread on here the other day about Vitamin D deficiency and Keppra. Take a look, it's in the kitchen somewhere. I was put on 50,000 I.U. (one capsule per week) for 12 weeks, which is prescription level doses. If the doctors do anything less--well, don't let them. And i have cracky bones everywhere--just didnt think my bones were going bad--i'm in my 30's dang it! And only been on AED's for 1 year, 4 years of Anti-anxiety medication, and bam...no Vitamin D to speak of in blood tests. I am sorry you have had bone fractures and its time to catch your body up, which i am told takes a long time. Since it takes awhile to deplete your body of Vitamin D, the reverse is true also. And w/o Vitamin D, our bodies cannot absorb calcium to keep our bones strength up. I take daily supplements, but I am gonna try for 2x's the daily recommended dose when i begin on Keppra again (shortly). I used to get really weak from dancing, and vitamin deficiency could be to blame! Get better and get all the nutritional supplements you can find!
 
Seizure Meds and Bad Bones

:tdown:Right now I am taking 50,000 IU of vitamin D per week, mega doses of calcium, plus yearly infusions of Reclast. With all of this my bones still are in terrible shape and some years make a little progress, some years they lose density. It's really a catch 22 since I must continue taking my seizure meds. My last blood draw showed little vitamin D in my system which is why I am taking the vitamin D weekly instead of monthly like I had been doing. My doctors are puzzled as to why I am still not absorbing my vitamin D and calcium and why I have chronic anemia since I take iron also. My anemia has been going on for years with no cause they can find.

I just can't believe that the drug manufacturers aren't required to list this as a side effect to taking these drugs. I think we are intelligent enough to figure out the acne, hair loss and weight gain, but a hidden effect like this would have been nice to know. Had I had knowledge of this I would have taken steps to protect myself from ending up in the mess I am in now.
 
I should be taking 35,000 IU per week. 5000 IU / day. Usually I get in about 3000/day.
Your amount threw me off, as I never have seen it written / week before. However, it is being recommended more and more lately in the medical papers.

I did not even get a sniffle this winter.
 
I have oestroposis too. But I have only been on seizure meds for a year. They suspected I had it after a simple fall that resulted in severe trauma to my arm in 2006. (I probably have it from having complete hystermocy when I was 27) The scan showed -3.6 in my hips. I cannot tolerate taking the massive amount of vitamin C they recommended...it just messes up my stomach too much. So I take as much as I can tolerate.
I tried actenol but it created havoc with bones, joints and muscles with pain and went off after 2 months. The drugs to treat oestro are much worse than seizure meds. Because of the pain I already have, I am avoiding all the meds with pain as side effects. My docs said reclast is still considered "experimental" and they have had a lot of patients had bad experience with this treatment. You can see some of the nightmares on http://www.inspire.com/groups/national-osteoporosis-foundation/ I will warn you the posters on that sight are not nice like people here.
I was wondering what do they do to treat your back fractures.
 
I too had a hysterectomy at a young age which didn't help. I question why you are taking vitamin C. Calcium is what you need to help your bones along with vitamin D. The Reclast really does work and since it is an infusion (IV) it totally bypasses your stomach and the side effects are minimal and go away in about 1 week. The week of pain is worth the preservation of bone. Also, I take Maalox or Tums as a source of calcium. You can get a lot of calcium that way and it is beneficial to your stomach.
 
sorry, I meant I take calcium with vitamin D...not C!
I was taking the monthly actenol twice and took it for 2 months and it took several weeks to get the poison out of my system. I was so crippled by that, I actually had to use a cane to walk! Docs said if I took reclast and had a bad reaction, since it is a yearly injection, it would take a minimum of a year to get it out of my system. The are a lot of stories that confirm this. I cannot take that chance. Since reclast is same drug as actenol...there is no reason to believe I would not have the pain problem with it too...but on a greater level.
I also had a problem with bacteria infections and bone infections from my accident....doc said that was definitely a reason I would not be a good candidate for experimental drug too.
I know some people do well, but it seems to be the minority of those who use reclast. Plus with it being such a new drug, there is no history of what you are really doing long term to your body. In addition there has not been favorable results as far as improved bones for all who have endured this. In fact there are several firms that are pursuing lawsuits against the drug company for those who actually have become disabled from this drug.
 
Welcome, Itsjustme. Glad to have you here. Stay with us. You are helping me talking about bones and medicines, and what to take for them.
I am having some problems with my bones. I take Citracal, Calcium with Vitamin D. With Keppra, my neurologist told me to take Vitamin B6. I decided to take the whole B complex. The medicines I am on are mysoline, Keppra, clonazepam, Lamictal and Neurontin.

What medicines are you on? I ask my pharmicist about side effects on medicines. I have never thought to specifically ask about bone fractures. I will from now on.

Robin is really good on this. Take her advice about how much you need.
I would imagine back fractures would be hard to treat. They would be very painful.
 
Has anyone on here tried Strontium Citrate? I am waiting to talk to neuro on my next appointment about it...the one thing that concerns me is the connection to kidney problems and since I am on keppra (that metabolizes in kidneys).
 
Hi JGBmartin,

I am taking Calcium Citrate + D. I looked at my bottle and it says nothing about Strontium. I am on Keppra. My neurologist has told me that with Keppra, I have to take Vitamin B6 for my Keppra. I take the B complex Vitamin.
 
Strontium Citrate is supposely a OTC version of a prescription used in Europe that is good at rebuilding healthy bones with almost no side effects. However this US version has some issues relating to the kidneys.
I know a lot of people on here take B6 with keppra. But my neuro flipped out when I told him I starting taking it. He said any more B6 than what is in a multivitamin was very dangerous to my neulogical system. I thought he was BSing since so many here take it...but I did some research and very easily found information confirming his statement. So right now I take multivitamin and just calcium with D supplement.
 
Hi jgbmartin,

Thank you for the information. I will start taking B6 from my multivitamin. I will also take Strontium Citrate. I also have diabetes and I do not need any problems with my kidneys.
 
feast.
don't change your supplements or add Strontium Citrate without talking to your doc. I think the Strontium Citrate might be ok...but due to possible kidney issues,I am going to talk to doc before I try it. Just was wondering if anyone here has tried it
 
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