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» LymeNet Flash » Questions and Discussion » Medical Questions » Experiencing crazy headaches

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Author Topic: Experiencing crazy headaches
xrunnerx2012
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Head pressure has always been awful for me.... but now I am getting daily migraines and a burning sensation in my head. Also random stabbing pains here and there...


Keep in mind i doubled my rifampin intake beginning of January. Is this a Bartonella herx??

90% of my symptoms are now located in my head.

Usually I am able to tough out the head pressure but these new pains are scaring me. Don't know if I should go to the ER or not.

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Lymetoo
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Rifampin gave me nightmarish headaches!!!!!!!!!

HORRIBLE headaches.

--------------------
--Lymetutu--
Opinions, not medical advice!

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GretaM
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I think it is a bartonella issue.

What other abx is the rifampin paired with?

Did your LL send you for a CT scan before starting treatment or have you had a CT scan of your head before?

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Lymetoo
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quote:
Originally posted by xrunnerx2012:

Keep in mind i doubled my rifampin intake beginning of January.

-

--------------------
--Lymetutu--
Opinions, not medical advice!

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xrunnerx2012
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I had many ct scans and an MRI/MRA two years ago when I was on the hunt to figure out what was wrong with me but no scans since.

I am also on minocycline. It has been constant since about 1pm.... Not getting any better. This is very new for me. It's awful.

I've been on Rifampin and Mino since July. Double the Rifampin January 1st. I have full coverage between my regular insurance and Medicaid which I was abler I get since I am unemployed. Not sure if I should bother going to the ER or not.

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surprise
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You could always lower the dose of Rifampin,
or take a binder, like charcoal,
to see if it's a herx.

What do you take for your headaches?
I only have ibuprofen, which somewhat helps if I can catch it early,

but when it's horrible, ice packs applied to my head bring relief.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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xrunnerx2012
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Is it normal to have a migraine like this that lasts over 7 hours?
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Lymetoo
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OK.. let me back up a minute and explain what happened to me.

I took one dose of Rifampin (300mg) and had an awful headache. Day 2 .. worse, Day 3 .. worse again, Day 4 .. Horrible, Day 5 .. called my LLMD. He said skip a day.

By that time, it was REALLY bad. Day 6 .. no Rifampin... HORRIBLE headache .. unbelievable. (and I had had years of migraines.. this was way worse)

Day 7 .. Called my LLMD. He said it may have caused brain swelling and sent out an abx to help. (not sure what it was.. this was years ago)

Not sure how long I took the second abx. (4-5 days??)

I had a non-stop 24/7 nightmare headache for the next 14 days. (21 days in all)

I never took another Rifampin and I never will.


--PS-- NOTHING I took for the headache relieved the pain AT ALL.

--------------------
--Lymetutu--
Opinions, not medical advice!

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GretaM
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Umm....

I have had 13 days without a migraine since November 2012.

When I saw the ahole neuro after 41 days straight in early days he said it wasn't common but with an unimpressive CT, it was just a change in migraine pattern.

In LL land I think it is call encephalitis when it is combined with confusion memory loss and delayed speech/thought processes/coordination?


I am SO the wrong person to give advice about extreme head pain. I am in he11 on earth.

Can you phone or email your LL for advice on what to do?

What about going back to your previous dose of rifampin in the meantime to see if the head pain goes away?

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GretaM
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Yes non lyme folks migraines last about 24-48 hours I think, and make them nauseated sound and light sensitive.
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Lymetoo
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Back in the 70's before I found out I had migraines, I called them my "three-day headaches."

Greta.. There is hope. My migraines disappeared after 4 years of lyme and babesia treatment.

--------------------
--Lymetutu--
Opinions, not medical advice!

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xrunnerx2012
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I just realized...... my minocycline pill changed. It used to be in a plastic tube with powder in it I guess. Now it is a solid pill. Could a change in an antibiotic like this cause bad headaches like this?


I woke up with the headache, now I am experiencing a burning sensation along with it.


This past weekend I had a cold and was coughing like crazy, could this be an "after" headache? I was coughing pretty hard.


Herx???


I don't know anymore.

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desertwind
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Minocycline and Doxycycline can cause raised intracranial pressure. Mino more then Doxy. It is not a common side effect but it IS possible.

My Chiari Neuro. warned me about the dangers of these two meds in regards raised pressure - I was at a higher risk due to my Chiari Malformation but it holds true for anyone.

Hope you feel better....DW

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Lymetoo
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And obviously, Rifampin can cause intracranial pressure.

runner.. Did you call the Dr or the pharmacist about the mino?

--------------------
--Lymetutu--
Opinions, not medical advice!

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xrunnerx2012
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I saw my LLMD yesterday and she said if I were to have those side effects from the medicine it would have happened months ago. Pharmacist said the same thing.

Today and yesterday I have felt amazing..... I just don't understand. I did have some heart pain however, but aside from that, no headaches, and barely any head pressure.

Maybe a herx?

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seibertneurolyme
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Sorry, but I disagree with the doc. Changing the dose on the rifampin could easily cause a severe herx such as a headache.

Hubby had to start at 50 mg on the rifampin and took at least 6 months to get to the normal 600 mg. He did eventually take 900 mg for an additional 9 months I think.

But the first time he tried rifampin he ended up in the ER after just a couple of 50 mg pills. For him it increased his seizure like activity in the beginning. He only managed to take about a dozen pills in 20 days I think. Then the doc switched him to cipro at that time to get the bart load down.

It was actually several years later that a different doc started at the 50 mg and ramped it up slowly.

Can't remember if you have treated for babs or not. But you need to be aware that rifampin works on lyme, bart and babs all. Here is the journal article showing it has some effect on babs.

http://www.ncbi.nlm.nih.gov/pubmed/22391527

Bea Seibert

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xrunnerx2012
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I said side effects, not herxing. She 100% thought it was a herx.

I'm very aware it hits more than Bartonella. Most meds hit more than just one bug.

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Lymetoo
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Glad the headache went away! Whew!

--------------------
--Lymetutu--
Opinions, not medical advice!

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