Home » Forum » Adults with Mito » Medical Questions and Concerns

Oddity

Posted: April 18th 2009

beck7422

 Print

I have been taking Levocarnitine for a few months now.  My body didn't like the CoQ10.

My Neurologist raised the dosage of the Levocarnitine and then I ran into problems.

On 660mg 3x a day, I could feel the left side of my body again, have overall more energy, a little more endurance, a lot more strength, and better cold resistance.

On 660mg 4x a day, my left side burned with the fire of a thousand suns from the top of my head to my toes, my husband just touching my skin lightly on my left side made me scream due to the excruciating pain, and my right side stayed normal.

On nothing per day, I am weak, floppy, and I can't feel my left side at all.

Does anyone have any idea what could cause this Oddity?

Hi Beck, I have trouble

Submitted by janice on Sat, 04/18/2009 - 9:50am.

Hi Beck, I have trouble taking carnitine also. My muscles feel worse, but it does raise my body temp. The only "burning" i get, is when i have been concentrating to long on something, behind my left knee it will burn, like it is on fire.It is not constant, but rather comes and go's.(it lasts 4 or 5 minutes then goes away for half an hour, then comes back, repeating itself) For me, it is a neurological symptom. If it decides to keep happening,(for days) i can usually stop it by taking gabapentin for a couple of days, and doesn't return until i "over think" again. It actually works as a good warning system for me, to know when i am over-doing it mentally. (always looking for the benifits!) I don't know that this is any help to you,........ just another tidbit of info. Hope you find your happy medium soon!
beck7422's picture

The problems I was

Submitted by beck7422 on Sun, 04/19/2009 - 8:59pm.

The problems I was experiencing on the larger dose of Carnitine were constant. Same thing with being on no medication (except 0 pain to the extreme). When I am on zero medication, I could injure my left side and not be aware of it. However, I will fall more and be more incapacited due to the injury.
mitoscottie's picture

I can tell when I am getting

Submitted by mitoscottie on Tue, 04/21/2009 - 10:27am.

I can tell when I am getting too much Carnitine in my system by the "fishy" body odour and "off" urine odour. I take less for a few days. Jean
__________________

Jean Shepherd

British Columbia, Canada

Hi Beck, I just found your

Submitted by janice on Wed, 04/22/2009 - 12:41pm.

Hi Beck, I just found your copy of the excercise guide (oops!) i haven't mailed, as i can't find the e-mail you sent me with your mailing address on it. I am so sorry!You are prob. wondering why everyone else is getting theres and not you? If you would like to send it again, i will send it Air mail! Sarah, if you e-mail me your mailing address also through the contact, i will go get one more copy made, and send.  My intention is that everyone can have immediate access to it, through this site, and can print it off at home.  It is in the proccess of becoming available on line through this site. Shouldn't be long now! I am sure Christy will let everyone know the day it becomes available.

Beck, what happens when you

Submitted by janice on Wed, 04/22/2009 - 10:23pm.

Beck, what happens when you say your body didn't like the Q-10, if you don't mind sharing?
beck7422's picture

I get MUCH weaker on CoQ10.

Submitted by beck7422 on Thu, 04/30/2009 - 12:44am.

I get MUCH weaker on CoQ10. It mitigates all the benefits I get from the Levocarnite (being able to walk, less floppy, less weak, less cold sensitive), except it still lets me feel the left side of my body. The only benefit I get from CoQ10 is it lowers the level of headaches I get on the Levocarnitine. I have a near constant headache on the Levocarnitine. I am normally prone to headaches and migranes, but they used to be once a month now they are most days a month. Worth it to be able to feel the left side of my body. e-mail for the exercise guide miriam.r.breslauer@gmail.com

Iam new and have been

Submitted by desi dee on Mon, 05/11/2009 - 2:13pm.

Iam new and have been reading & trying to figure out how to comment, post,answer. (thanks in advance for being patient:). Anyway, I'm going for it on this one. Both I & my momma have been diagnosed & we've been on Levocarnitine for about a yr. -330mg 3X a day. It does seem to raise her body temp, never made the connection. About 2-3hrs after she takes it she complains of being hot & wants to take her robe off. (When usually she's cold.) It's funny almost nightly this happens & Daddy will say, momma's gettin hot, it's timefor her sherbet.

Myself, can't really tell whether it's menopause or the levocarnatine. but I have hot flashes all the time, yuk! I had a complete hysterectomy about a 2yrs ago  & have just chalked it up to that. But who knows? I've haven't taken any hormones after the surgery because I had so many female problems before it and "hormone therapy" was something that was tried (& hated). Never heard that levocarnitine could make you hot. Thanks.

Hi all! I've been taking

Submitted by sarbata on Tue, 05/12/2009 - 3:55pm.

Hi all! I've been taking Levocarnitine for 7 yrs. I've taken the pill form, and IV bolus. I've been on the liquid, for the past 4yrs. The liquid seems to be the easiest for the gut to absorb, but it can cause diarrhea. I really struggled with the pills. Over the years i've found that if I don't take Levocarnitine with enough food/calories, I'll get stomach pain followed by a hot (on fire) feeling sometimes in my face and ears. And sometimes the places that feel hot even turn red. By eating food before taking the stuff, those symptoms have been virtually eliminated.
beck7422's picture

So far, I have only taken

Submitted by beck7422 on Tue, 05/12/2009 - 11:11pm.

So far, I have only taken the Levocarnitine with food. It makes me hungrier than normal.