Hello, I am wondering if anyone else has these unbearable symptoms while taking flagyl and/or mino.
My LLMD wants me to work up to flagyl, combined with daily of minocycline.
I have only made it up to a day, along with mino, and I am having the most horrendous pains in my head.
It feels like I have a huge knife stabbing into the top and back of my head, and it has been lasting for days at a time with no relief.
I end up holding my head and writhing on the floor. I have never felt pain like this ikn my life. It starts with a pounding in my teeth, and radiates up into my brain. I could swear that my head is going to explode.
I have already had normal CT scans of my head, with and without contrast, a lumbar puncture, and a cisternogram. Nothing comes back abnormal.
The pain in my head has gotten so bad that I have gone to the ER several times, and even 4mg of IV dilaudid does not touch this pain.
All that ends up happening at the ER is being lectured about how I couldn't possibly have been infected with Lyme in Texas, despite positive Western Blots from both LabCorp and Igenex.
I have been diagnosed with trigeminal neuralgia secondary to neuroborreliosis. Both my LLMD and neurosurgeon say that if I don't kill the LD, my trigeminal neuralgia will never go away.
I would just really like to know if any other neurolyme sufferers have or have had this terrible pain.
I would feel so much better knowing that I am not the only one. Although I would never wish this pain on anyone!
Thank you:)
*** edited to remove dosages, please see the terms of use stickied at the top of medical questions ***
[ 12-28-2010, 10:46 PM: Message edited by: sixgoofykids ]
Posted by Lymetoo (Member # 743) on :
Too much flagyl can cause nerve pain. Be careful, because you don't want any permanent damage.
Some of us can't take more than 500mg a day. I know I had to work my way up to that and it took quite awhile to do so.
I've had that pain before and I agree.. you wouldn't wish it on anyone.
Posted by hhoskins72 (Member # 26190) on :
Dr. C told me that I needed to take flagyl to combat the cysts that were causing my cranial nerve pain. So Flagyl itself can cause the nerve pain that I am taking it for? Now I am really confused!
Posted by Lymetoo (Member # 743) on :
Well, it's a good drug for the cysts. But all drugs have side effects. Just be careful and aware.
*raising hand* i have this pain quite frequently and it is NOT due to one specific drug. it is more illness based for me. Finally, IV Invanz knocked it down quite a bit.
i feel for you because no pain med has worked for me either....so debilitating.
you're not alone.
Posted by sfcharm (Member # 9392) on :
I am back here after 2 1/2 years of being symptoms free. I have stabbing pain all over my body. I can't say it's from the flagyl since I had it before I went on flagyl 10 days ago.
I can tell you that I have serious lower back pain from the flagyl. It happened last time I treated lyme and now. It is almost unbearable. One day I had sciatica and couldn't drive it was so painful.
The flagyl is seriously potent, but from experience it helps in the long run.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by feelfit: [QB] *raising hand* i have this pain quite frequently and it is NOT due to one specific drug. it is more illness based for me.
Absolutely!! But I was just making the point to be careful with flagyl or (tindamax.)
Some don't know that it affects the nerves ... not always.. but CAN.
Could very well be a herx.
Posted by feelfit (Member # 12770) on :
sorry tutu, i was not disputing your advice, not at all. for this person, it *could* very well be the flagyl.
Posted by Lymetoo (Member # 743) on :
NO problem... I just wanted her (and others) to know that I didn't disagree with YOU either!
The pain is most likely from the Lyme & Co ..
Posted by Cold Feet (Member # 9882) on :
feelfit, how could it be from the flagyl? Do you mean where it's addressing the point of infection?
Posted by feelfit (Member # 12770) on :
cold feet, I don't think it's b/c of the flagyl. i think it is from the infection. TuTu pointed out that flagyl can also cause nerve pain.
but i think that the poster was diagnosed with trigeminal neuralgia before they started flagyl, so i think it is a symptom flare or the flagyl getting to the infection in the nerve.
Posted by karenl (Member # 17753) on :
I got that horrible pain when I first took only small amounts of flagyl like quarter of a tablet. I had to start slowly, later I took 1,500 of flagyl over weeks without headache.
So yes, I got extreme headache and horrible toothpain when I first started flagyl. Why are you not starting on lower dose? I also started on flagyl only and added the mino later. Take a day off to recover. Sorry you feel so bad at Christmas.
Posted by sillia (Member # 23994) on :
Did you check with the doctor about this? I think it would be reasonable to lower your Flagyl dose down to where you can tolerate it better and stay there for a while.
I was herxing pretty bad after working my way up to just 500 mg per day, and Dr. C told me I can stay at a lower dose in order to prevent this. Yes, in the end it would be nice to reach 750 but you can't push this at the expense of your health.
Slow and steady wins the race. You are still making progress at a lower dose. Be patient. (This is what I'm telling myself.)
Good luck, I hope you get past this point, you shouldn't need to suffer like this.
Posted by hhoskins72 (Member # 26190) on :
Yes, I am most certainly lowering my dose. I thought beginning at 1 tablet a day would be low enough, but I'm cutting back to 1/4 pill daily and slowly ramping up from there.
Dr. C has written in my notes to "begin at a low dose and slowly increase." I definitely did not start low enough!
He did say that it would (most likely) increase my TN pain before it got better, I just did not anticipate such horrible all-over stabbing pain in my head.
Sfcharm, I am also having serious lower back pain since beginning flagyl. I'm glad you mentioned that (although SO sorry that you are hurting too!)
I feel much more "normal" knowing that I am not alone in the pains I am having.
Thank you all so much for your replies and input. Greatly appreciated!