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Head pressure minocycline

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Posted 10/20/2015 6:23 PM (GMT 0)
Hi everyone,

I have just started treatment with a new LLMD. I was seeing another LLMD but due to him retiring i had to find a new one. With the old doctor i was on minocycline x2 daily at 100mg. On day 4 i felt so out of it to where i couldn't walk in a straight line and felt like i was going to topple over. I also had head pressure that was so bad i ended up going to the ER twice.

My doctor just told me he thought i had a bad herx and to power through. I was concerned about Intracranial Hypertension so i went to a Neuro Ophthalmologist who checked my optic nerves for swelling, but there wasn't any.

She also sent me to a neurologist who told me that i should not take minocycline anymore and it was probably just a bad reaction. I saw my new LLMD and did explain all of this, but he said intracranial hypertension was pretty rare and it probably was just a bad herx and he wanted to try minocycline again at a much lower dose, only 50mg every other day.

I started again and once again the head pressure is back and i'm not sure what to do. Has anyone taken this medication and had this reaction? I am still really concerned i may have intracranial hypertension.
Posted 10/20/2015 7:45 PM (GMT 0)
Yes, i have.

My LLMD prescribed x3 daily at 100mg. I was not able to take this dosage for more than 4 days, i had to lower it to 200mg per day. Yes .... the head pressure.... It creates intracranial hypertension. I am not sure this is a brain herx symptom, for me it was antibiotic side effect.

onlinelibrary.wiley.com/doi/10.1111/j.1444-0938.2000.tb05015.x/pdf

Anyway, for neuro lyme i'd say this Minocyline is probably the best oral antibiotic that you can take. That is because it is the most lipid soluble tetracycline, and the brain is fatty tissue:

"
Minocycline is the most lipid-soluble of the tetracycline-class antibiotics, giving it the greatest penetration into the prostate and brain, but also the greatest amount of central nervous system (CNS)-related side effects, such as vertigo.
"
/en.wikipedia.org/wiki/Minocycline

After a week on this i felt my brain is starting to work again after many years of being affected by lyme. That's the moment when i was absolutely sure i have Lyme disease (i still had some doubts because of bad tests, complex symptoms etc...). The world looked and felt ... sharper. It's hard to describe.
Posted 10/20/2015 7:48 PM (GMT 0)
This is what i was concerned about. Should the antibiotic not be stopped if it is causing intracranial hypertension?
Posted 10/20/2015 8:43 PM (GMT 0)
I agree... just plow thru. At one point I was on Mino 100mg 2x/day, Rifampin 300 mg 2x/day, and plaquenil 200 mg 2x/day. 3 months of hell then cognition clearity and no more pressure.
Posted 10/20/2015 8:46 PM (GMT 0)
Did you guys only get the pressure when starting the meds? Do you mind describing it?
Posted 10/20/2015 9:54 PM (GMT 0)
I have had the feeling of pressure in my head - behind my eyes - this was prior to treatment.
I requested and pushed for minocycline - for it's ability to penetrate blood/brain barrier.

When I first went on mino - after a 2 1/2 month antibiotic break...I was dizzy, off balance, but stuck it out and have now added rifampin to it.

My head is doing quite well now...I rarely get the pressure behind the eyes...and the feeling of a pulse in my head - when I stand up also rarely happens. The pulsatile tinnitus is barely negligible.

Thanks Tickbite for reminding me about your experience with Rif/mino/plaq. I started mino mid-July, Rifampin mid-August and had a horrible day yesterday...started to get me down. I actually didn't get on to full dose of rifampin (300 x2) until September 5, so not quite at 2 months yet...there's still hope for me!!! Even if I start counting on the starting dose, it's not been three months yet...
Posted 10/20/2015 11:05 PM (GMT 0)
I'd like to counter the 'just plow through it' thought - Mino and that attitude is how I ended up with seizure and being labeled as an abx failure since I couldn't continue due to the symptoms severity with all Neuro symptoms. I stuttered so badly that there wasn't hardly any point to trying to talk, no working memory (literally), randomly fainting, severe POTS so that I fainted almost every single time I stood up, being bed bound and more.

As with all things, it's in moderation. If your body can detox well enough to handle using this medication you will not have severe symptoms, but no doctor - or anyone else - should encourage people to push through severe herxing. Herxing is when your body is so full of toxins that it can no longer function properly - or we wouldn't have those symptoms. So pushing through a minor herx is very different than pushing through a major herx. I tried to push through major herxing for many months - and experienced a horrendous set back of many years.
Posted 10/20/2015 11:13 PM (GMT 0)
How long were you on mino for Traveler?
Posted 10/20/2015 11:23 PM (GMT 0)
12 months. That time and the 3 years of recovery so that I could get back into treatment were the hardest (and the scariest) time of my life - and it's been anything but an easy life to be completely honest about it.
Posted 4/21/2016 5:30 AM (GMT 0)
I realize this post is a few months old. My head pressure comes and goes, but when it comes it hangs around for days. I would consider it below the level of a headache, just pressure like my brain is swollen. I have been on Doxy for a couple of weeks (again), can not take Mino, I had an allergic rx to that one a few years ago. It also feels like my face and sinus cavities and around my eyes are numb. Almost like a stroke is coming but it does not manifest anywhere else or lead to any deficiencies. Scary since I am a nurse and deal with strokes all the time, but this does not evolve like a stroke, just has that dull pressure and numbness down the front of my nose to the teeth. Looking back, it was there in the beginning with Lyme, then in '88 It also had a tightness in my throat like someone was squeezing me around the neck..... that part is more rare now. I would like to just know some type of fix for this feeling. If you told me to drink a quart of vodka I would turn the bottle right up but I rarely drink. Definitely feels like inflammation, or some type of blockages that are constricting the flow of blood to the head whether in or our, I can't tell. Possibly I should be more regular with taking my Nattokinase. Anyone else?
Posted 4/21/2016 5:36 AM (GMT 0)
Have you been treating for a while now?

And...have you treated the co-infections?

...Also - are you detoxing enough?
Posted 4/21/2016 3:45 PM (GMT 0)
Sounds like your nervous system is being hit pretty hard. I'm really sorry, I know how scary this can all be.

The questions I have are the same as Girlies questions.
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