gigimac
Frequent Contributor (1K+ posts)
Member # 33353
posted
I was looking at the difference between mino and doxy and found this.
"A known but rare side effect of this drug is secondary intracranial hypertension, a serious condition first indicated by headaches, disorientation and dizziness."
The intracranial hypertension sounds scary. Is it rare? Would one be able to stop in time if they started having headaches before they got hypertension?
Just wondering if anyone has experienced this or if it is pretty rare.
Posts: 1534 | From Greensboro NC | Registered: Aug 2011
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Mino caused so much vertigo/dizziness for me I needed to lay on the ground all the time. It penetrates the central nervous system and can really mess some people up.
It definitely was affecting my head. This was immediate. The doc thought it was a herx.
This was not a herx. Face and neck swelled after a week taking it.
Went away pretty fast when I stopped.
Posts: 2839 | From California | Registered: Jul 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- One aspect about minocycline is that it is one of many drugs that is ototoxic / vestibular toxic.
I could not function at all. It had me literally seeing upside down, and unable to walk, talk or much else. Such vertigo I've never encountered before. I tried it about 4 different times, weeks or a month apart over a couple of months. No go each time.
I had really wanted this to work as doxycycline was no longer an option for me due to multiple satellite rashes that were just intolerable.
Some seem to do just fine with minocycline
but many others are affected by the ototoxic nature of it.
To help offset that, kidney and liver support on board FIRST, may be of help. B-5 is also said to help prevent the vertigo that can be inherent with any oto-vestibu;ar-toxic drug.
More detail within here, scroll down to find the posts about mino.
I tried several times but could not tolerate it. Still, as mentioned (and for some reason I've not figured out) some do just fine but still, even they usually report they needed to start low & slow.
Those who already have inner / middle ear / vestibular issues need to be most careful.
posted
Made me feel dizzy and off balance. I could not tolerate it.
Posts: 342 | From Philadelphia | Registered: Dec 2011
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Many neuro lyme patients have intercranial hypertension anyways...
I take diamox to keep the brain pressure down.
I didn't notice mino aggravating this.
I functioned for 8 months with intercranial hypertension before my LL recognized it and treated it.
The neurologists I saw were useless as far as assessment goes.
Perhaps in other cases it is life and death, but in my case it presented as severe head pain, disorientation, confusion, difficulty speaking swallowing and coordination.
I think the vestibular issues are more common with mino use, than the hypertension.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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gigimac
Frequent Contributor (1K+ posts)
Member # 33353
posted
Thanks for the responses everyone, my ears were ringing when i woke up and i took my first dose last night.
I really hope the ear ringing isn't going to prevent me from giving this med a good try. There aren't many abx left i can take.
Could ear ringing be a herx instead? I have had it off and on for a while but it was much worse this morning than usual.
I will up the support as keebler has suggested.
Posts: 1534 | From Greensboro NC | Registered: Aug 2011
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hi Gigi,
My doc clearly told me that oxotoxicity was a side effect, not a herx. Said if I experienced anything with the ears to not assume it was a herx, and discontinue immediately.
Sorry you have the ear ringing.
Personally my herxes on mino hit at about day 4. And never included any ear things, thank goodness.
If you are having ear ringing I would phone your LL, and possibly stop the mino to prevent permanent damage being done to your ears.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I have been trying to cope with mino since Sept. 15, going up incredibly slowly. I started with 25 mg once per day. So far I cannot go above 50 mg once per day without horrible migraines, nausea, out of it, imbalance, etc.
I don't think I am going to be able to tolerate this one, although I am still trying.
I have terrible tinnitus, but I already had that. Don't know if it is increased or not. My otolaryngologist said that the tinnitus if from my terrible (my word) hearing, that my brain is trying to make sense of the noises it barely hears.
I think I will go back to him soon and see what he says. Amazingly, he knows a lot about Lyme and gives it due respect, which is rare, of course, for a dr who doesn't treat Lyme.
Arghhh! Thank you for the reminder, Keebler. There are ALWAYS so many darned things to keep in mind, it is impossible to remember them all!
BTW, I am way overdue to get hearing aids, which I did last year, but had too many bumps in the road (not worth explaining here). My oto said that getting them would help the tinnitus. My hearing is REALLY bad. Again----there are way too many parts of me falling apart to attend to----yeesh!
Posts: 3771 | From around | Registered: Mar 2008
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