posted
My 15 year old daughter is currently taking Flagyl for her Neurological Lyme. She is up to two pills per day, we just ramped it up yesterday. She is experiencing the most intense horrible headaches where she can't even open her eyes and lift her head of her pillow. Has anyone else experiences these types of headaches? She's been getting headaches from the beginning but this Flagyl seems to really intensify them. We are seeing her LLMD this afternoon and I really really want an MRI (for peace of mind). He has shot me down a few times when asked. Should I be persistent? I would feel alot better knowing that we are not overlooking something else.
Posts: 163 | From Central New Jersey | Registered: Jan 2010
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
Wow. I experienced this with it as well. I was on it for a few months than- whamo!- sudden and very debilitating headaches, exactly like you described. My advice, per my own experience, is to take a break from the flagyl.
Regarding the MRI, if your intuition tells you to keep pushing for it, than I'd say keep doing so. If nothing else but for your own peace of mind. Always better to err on the safe side (IMO).
Flagyl and Tindamax are known to possibly have neuro side effects. I didn't realize that's what was happening to me- thought it was just a really bad herx at the time- until I spoke with my doc about it.
I took a break from it then resumed it again a few weeks later without any problems. I've since changed to Tindamax and use the pulsing method.
(Just a quick FYI- I had bad headaches at the beginning, too, but they did feel different that the flagyl ones. Only thing that got rid of the Lyme headaches for me was IV Rocephin. Orals didn't touch 'em. Again, just my own experience.)
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Flagyl gives me terrible headaches. I take it just three days a week to counteract the neuro side effects. I hope the appt. went well.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
I ramped up to the dose I am supposed to be on for Flagyl and just added in Ceftin today. I haven't had headaches from it...if anything I just feel a bit spaced out. I would say to push for the MRI just for peace of mind!
Posts: 376 | From New York | Registered: Jan 2011
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posted
My daughter is 19 and she takes Tindamax. She takes it for 10 consecutive days out of a month. Last month was her second month. The first month she herxed, but it was tolerable. She had slight headaches. The second month the llmd had said that if she felt decent enough we could try two pills a day. We did that for 5 days out of the 10, but the headaches were so bad she was vomiting. We aren't sure what to do this month. My daughter said she wants to try to take the two pills ago, but seeing her with those headaches and vomiting I don't think it is a good idea. She told me she knows what her body can handle.
I hope your daughter feels better soon. I know what it is like to watch someone you love in pain...it's horrible.
Posts: 107 | From New Jersey | Registered: Nov 2009
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posted
It's herheimer for sure and probably the Flagyl hittin so hard. I had the same experience with Flagyl...even more brutal headaches.
Mine came and went but were mostly there for months and I wish I had been smart enough to pulse the Flagyl back then.
Take care of your daughter and give her a week off the Flagyl. Dr.J in DC took me way down to pulsing only 2 days of Flagyl. I feel so much better honestly.
Flagyl has still got the FDA very wishy washy about cancer. For those concerns to still be on the table at standard doses, think of us Lyme patients that use it for years...I say use with caution.
Posts: 410 | From Victoria BC, Canada | Registered: Jul 2008
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
I would agree to give her a break from the Flagyl, even herxes can be harmful. I would also include a binder to get rid of some of those toxins. I take Chitosan when I herx and it seems to alleviate the headaches.
posted
I took her to the doc yesterday. Her headaches come and go. She was perfectly fine by the afternoon. The LLMD really feels this is the right med for her and that it's finally hitting the babs. She is not pulsing and is not taking anything else with the flagyl. He said that if 2 pills a day was to much, to lower to 1 1/2 per day until the headaches subside. But his goal is for her to take 3 per day every day. Is this normal? I see alot of you pulse it?
Posts: 163 | From Central New Jersey | Registered: Jan 2010
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