posted
Hi all Starting to feel kind of hopeless about my head pressure ever going away. Did anyone have daily pressure/occasional migraine that went away with treatment?
Thanks for any input
Posts: 238 | From new england | Registered: Feb 2013
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Our daughter had constant headaches. The non stop headaches went away after a few months on Rifampin.
Also going gluten free seemed to make a difference too.
I hope you feel better very soon.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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posted
Searching for the same hope. Never ending 24/7 for twenty years, most times keeping me bedbound. Been gluten and sugar free for a couple years. Take all the enzymes like bolouke and natto.
Praying rocephin is the answer, so far it's the only thing I've ever read that has given anyone a break from this hell.
Posts: 219 | From pacific nw | Registered: Jun 2009
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posted
My LLMD just prescribed diamox, a CNS diuretic. I haven't tried it yet, but he said he finds many of his Lyme patients suffer from head pressure and diamox seems to relieve it for the majority.
Posts: 618 | From NC | Registered: Oct 2009
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Has anyone tried high doses of good quality fish oil and/or astaxanthin to relieve head pressure? Someone I recently met at a lyme support group (had been a med student when hit with debilitating lyme) suggested both of these. She said they saved her life when her lyme inflammation was at its worse, causing major head pressure and tinnitus.
Apparently, both cross the BBB - especially the astaxanthin. I started the fish oil and I think it is helping. She suggested 3-4 grams (3000-4000mg) of EPA/DHA. I would like to start the astaxanthin soon, but just started some new herbs, so don't want to introduce too many things at once. My LLNP supports the use of both.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
How long have you been treating? I had the head pressure. It was a scary symptom.
Once I started treatment that was the end of it. I wasn't even treated particularly aggressively for the first year. Always single agent ABX. Have you been on flagyl yet?
Posts: 478 | From Third Coast | Registered: Feb 2011
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Koo-I treated lyme for 7 months with flagyl pulses-headaches were never a symptom for me. Then woke up one day with migraine and it has stayed. Yes, I have been on flagyl. Treated for babs-no relief. I am 3 weeks into bart treatment with rifampin and mino and hoping this will be my key. Lots going on in my head and hard herxing. Praying this works.
Posts: 238 | From new england | Registered: Feb 2013
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posted
I had crushing migraines and head presssure from day one with lyme-over five yrs ago
did one and a half yrs IV antibiotics, IM shots, heavy oral, the pressure and pain waned some but always there
14 months into rifing, changed to a holistic doc, slowly weaned off my pain meds (i'm talking fentalynol patches) headaches come only every once in a while, head pressure almost nonexistent
I never thought they would go away but this treatment was the only thing that worked for me 6 years too long but at least it is in the past
Posts: 298 | From usa | Registered: Aug 2009
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posted
Antibiotics have been the only solution to eradicate the head and neck pain! I am currently on Plaquenil and Doxy. and feeling great. Good luck.
Posts: 2 | From CA | Registered: Oct 2012
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posted
It's the worst symptom I have. It is horrible and today it has actually been very severe. It comes and goes. It never fully goes away. I don't know if its viral, parasitic, Lyme, Bartonella or Babesia Duncani which I tested positive for. I don't have classic Babesia symptoms but I get hot easily. I have only tried doxy mepron bactrim biaxin and Zithromax. Just on mepron and bactrim DS right now. There was a little relief on biaxin but I was taken off of it. My ears pop and get pressure, I get sharp pains in my head, sometimes I have a burning sensation in my head, I get pressure in my sinuses and neck but no congestion. I have started to get ear pain. I don't know if I can live with this the rest of my life.
Posts: 251 | From Baltimore | Registered: Oct 2012
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posted
And I have sores on the top of my head
Posts: 251 | From Baltimore | Registered: Oct 2012
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
sickofthepain, have you seen an eye doctor at all? I would not fool around with something that feels like a tumor.
Astaxanthin, that I mentioned previously, is a supplement that is very good for both your eyes and brain inflammation.
For many, mangosteen juice can help with eye problems related to lyme. All you need is a small amount. It is expensive but it will last you several weeks or months based on how much you drink.
Hope things improve for you.
Posts: 2386 | From New England | Registered: Aug 2011
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
If you haven't done this already, I would email the Tick Born Disease Alliance for a medical referral and ask them for the nearest lyme literate opthamologist to your location.
That must be so frightening. I know someone in the Boston area who sees a lyme literate opthamologist that she is very pleased with. I hope you find someone who can help you.
In the meantime, I would try to drink a little mangosteen juice every day and keep on taking the astaxanthin. They are both known to help with visual problems. Good luck to you.
Posts: 2386 | From New England | Registered: Aug 2011
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