I just started treatment again recently, after not being able to treat for too long. I'm ramping up slowly---on doxy, started at 100 mg twice/day, then started at 150 mg rifampin, then went up to doxy 3 times/day. But since I went up to doxy 3 times/day, the migraines/bad headaches/head pressure have been brutal!!
And I am just finally coming out of 6 months of daily migraines as it is!! What improved them was lots of expensive treatment with the osteopath and deep-tissue massage therapist. And now this. Just had a treatment with the massage therapist today, but I had a horrible migraine later anyway, due to the meds.
I didn't take my third doxy tonight, as it was too awful. I think I just can't handle that level of doxy now. The first time I took doxy, at only 100 mg twice/day, I had a migraine daily for the whole 3 weeks I was on it. I just toughed it out. This was a few years ago.
I'm due to increase my rifampin tomorrow to twice/day. But I guess I better hold off. And keep the doxy at 200 mg/day for now. Any feedback?? Lord have mercy! I'm so sick of migraines and pain!!
Posted by angelp (Member # 36878) on :
Hi...i have been getting headaches every 4 days and they last for 3 to 5 days..debilitating ones. Today had to take my Mom who has lung cancer to her doctors...my husband had to drive us cause I couldn't imagine even trying...I used to love taking long drives.
I used to get these migraines a long time ago..a few would send me to the hospital...they kept telling me it must be MS cause of course I have been diagnosed with everything...only to find out it Lyme afterr 15 years of searching.
I get the headaches about an hour after I take the doxy..so it must be from the herxing...thats what the doctor told me. I try not to cry cause it makes them worst...but it so hard not to.
I take ibuprophen and lay with my upper body on pillows cause lying flat will hurt more...I cant handle any light so wear sunglasses ouutside and keep shades down when sun is out. I have had them for 3 days now..resting in bed now after the long day with Mom. Ice packs or heat on head help..try whichever feels better. Sleep is good so you dont feel the pain, but you still wake up with the headache..at least it gives some break.
I wanted to give up yesterday...couldn' take it anymore, but had a good cry and felt better...Just have to keep looking to the future...a future without feeling like crap and feeling like going out...can't wait for that day! It will come......
Hope you feel better, Rumigirl and manybites...hang in there
Posted by Rumigirl (Member # 15091) on :
angelp, have you told your LLMD about getting the headaches from doxy?? You should, because doxy can cause increased cranial hypertension (not regular hypertension). He/she could maybe switch you to another med.
I'm taking the doxy for Anaplasma, and also to augment rifampin, so I can't switch. But I backed down to 100 mg twice a day for now. I'm due to increase the rifampin, but am not sure whether to yet or not. (I can't take quinolones or macrolides, so that's why there is nothing else to go with the rifampin. Plus, there's the Anaplasma . . .).
Any other responses?
Posted by Lymetoo (Member # 743) on :
Rifampin gave me the worst headaches of my life. It was not a herx.
Posted by seibertneurolyme (Member # 6416) on :
Rumigirl,
I would just stay at lower doses on both meds and gradually increase doses on each one (one at a time).
Hubby was given IV doxy back in 2007 in the hospital before we tried aggressive bart treatment. Can't remember the dose at the time. But he did get really bad headaches and didn't stay on the med very long.
Then we tried IV doxy last summer and he spiked a fever with the first dose -- that was his 5th high fever that went into sepsis. So noone was willing to try IV doxy again.
And then he got the RMSF rash a couple of days later on the day he was discharged from the hospital. Plus positive tests for 2 or 3 different ehrlichia/anaplasma strains later that fall.
He ended up staying on levaquin for a couple of months and oral doxy for 5 months I think.
Anyway -- hubby was able to tolerate oral doxy without a problem -- maybe you could take it orally for a month or so and then try again to switch to IV. That is probably what I would try.
Hubby did take oral doxy back in 2003 for 2 or 3 months and was able to take it then. Actually at the time the doc did blood level tests and since hubby had gastritis at the time he was actually absorbing the doxy very well and only needed 200 mg daily instead of 400 mg to get a therapeutic blood level.
Since you have been off meds for a while you may just have to take either the doxy or rifampin for a month or so by itself before adding in the 2nd med.
Both IV doxy and rifampin are very very hard meds for some people to handle.
Good luck.
Bea Seibert
Posted by Rumigirl (Member # 15091) on :
I am only on orals right now, not IV. That's certainly not my choice, but was what the LLMD would give me for now. He wanted to focus on Bart (which I don't think is the most important one now, but he does).
Lymetoo, oh, that is terrible news! Did you stick with it, and did it help, or was it too much? Argggh!
Thank you, Bea, yes, I will obviously have to take it very slowly. I'm not at all convinced that the doxy will get rid of the Anaplasma, but maybe with rifampin it will? I've had doxy before and never got rid of it, including one month of IV last year, but I started at only 100 mg, and went up slowly from there. (Boy, IV doxy is expensive for such an old, cheap drug!).
Posted by angelp (Member # 36878) on :
I'm looking into other doctors for second opinions cause I had to ask mine to test for coinfections...not sure if my doctor will be able to get me better.
So I am trying to find a good doctor in CT or surrounding area...I drvie an hour now, but I am not sure if its worth it..at least I got started on doxy and I have supplements from my ND .
Been on doxy for 6 months now and recently have started to get worst...so I am not sure what to do.
Posted by Julie-MA (Member # 5110) on :
TALK TO YOUR LLMD re DOXY!!!
I had terrible headaches when I went on it (had been on many different abx over the years), called his office, discontinued it, and then when I saw him, he showed me an article that talked about intercranial swelling, etc from doxy. He said he had just read about it and that my symptoms matched exactly.
I remembered that years ago I had headaches on minocyclene too.
It may not be something you should just try to "endure."
BTW, I had no problems on Rifampin.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Rumigirl:
Lymetoo, oh, that is terrible news! Did you stick with it, and did it help, or was it too much? Argggh!
- I lasted 5 days. Had a horrible headache from Day 1. The headache from H continued 3 LONG weeks. My LLMD said it had caused brain swelling.
Posted by Rumigirl (Member # 15091) on :
Yes, I knew that was exactly what was happening: the doxy was causing increased cranial hypertension. It had happened to me before with doxy, even at only 200 mg/day. This time it got bad after I increased the dose to 100 mg 3 times per day, along with 150 mg of rifampin (am slowly building up).
So I dropped back to 200 mg/day, and the worst of the migraines are gone. Thank goodness! I've now increased the rifampin to 150 mg bid, and am tolerating that ok. (Aside from battling Candida from the oral abx again).
I'll try to increase the doxy at some point again, but don't especially want to do that now. And I'll keep slowly ramping upo n the rifampin.