posted
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.
Posts: 251 | From Baltimore | Registered: Oct 2012
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posted
Rifampin gave me nightmarish headaches!!!!!!!!!
HORRIBLE headaches.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
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?
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
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.
Posts: 251 | From Baltimore | Registered: Oct 2012
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
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! Posts: 2518 | From USA | Registered: Nov 2011
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posted
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! Posts: 96222 | From Texas | Registered: Feb 2001
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GretaM
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posted
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?
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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GretaM
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posted
Yes non lyme folks migraines last about 24-48 hours I think, and make them nauseated sound and light sensitive.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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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.
Posts: 251 | From Baltimore | Registered: Oct 2012
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
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
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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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?
Posts: 251 | From Baltimore | Registered: Oct 2012
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posted
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.
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