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What got rid of your chronic head pressure/headaches/etc?

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Posted 4/22/2013 5:16 PM (GMT 0)
Antibiotic Name?
Duration?
Supportive Supplements and/or herbals?
LLMD's thought on what was causing it?

Thank you.
Posted 4/22/2013 5:51 PM (GMT 0)
xrunnerx08, I hope you get some answers here! I have the same problem. I'm on rifampin and Azith (for about 2 months now), and no changes so far. I know that probably doesn't help, unless you want to know what NOT to take, lol!

I plan to talk to my LLMD about it next week. Do you have neck pain too? My headaches & pressure always stem from neck pain.
Posted 4/22/2013 5:55 PM (GMT 0)
Nooooo. I was hoping that was the key! I have been on Mepron Bactrim DS ands Biaxin since Oct. And the pressure has morphed..changed...gotten better...gotten worse at time. It has been awful. I tested positive for Babesia Duncani and my doc wants to go after Bartonella soon with Rifampin. Oy
Posted 4/22/2013 7:33 PM (GMT 0)
Rifampin hasn't helped me with headaches either. Been on that plus Doxy for almost 2 months now and my head discomfort is back. One thing the combo may be helping is with burning sensations in my legs. That seems to have abated...for now.
Posted 4/22/2013 9:49 PM (GMT 0)
What got rid of your chronic head pressure/headaches/etc?.

So far, nothin g.
Posted 4/22/2013 10:01 PM (GMT 0)
All of my antibiotics helped with headaches eventually. I say eventually, because these ABXs caused additional Herxing which made my headaches worse at first.

These are the ones that I took and they worked for me:

Cefuroxime Axetil, 500mg, twice/day
CefTRIAXone, PICC line to heart, 10gm per day
Cefdinir/Omnicef, 300mg, twice per day

All of these got rid of my headaches after about 1 to 3 weeks of treatment.

You may also want to make certain your Candida is entirely under control. I get bad headaches during Candida flare ups, which I control with very specific probiotics now.

Post Edited (vcast) : 4/22/2013 4:09:03 PM (GMT-6)

Posted 4/23/2013 12:03 AM (GMT 0)
CCSVI can cause head pressure (chronic cerebro-spinal venous insufficiency). I had this and had a meidical procedure to rectify it (open up the veins).

The jugular veins were constricted due to the lyme infection and causing blood to backflow to the brain. Head pressure is one symptom.

You can take lumbrokinase also, which helps digest and break up the stuff constricting the veins. I am still taking it. It breaks up biolfilm. I am still taking it to make sure the veins to do not re-constrict. So far so good after 5 months.


There is a lot on the web about CCSVI and a lot of misinformation and hype as well as good info. If interested, I can give you a referral to the Neurologist who did mine and also the LL doc that found it in the first place.


good luck! email me if you want the referral.
Posted 4/23/2013 2:42 AM (GMT 0)
nan777 - how is CCSVI diagnosed? Would this show in an X-ray, maybe of the cervical spine?
Posted 4/23/2013 3:00 AM (GMT 0)
I also get head pressure but the bigger problem is tingling on the top of my head. Off and on every day. Also neck pain and a balance issue. The head pressure at one time was so bad I thought my head was going to explode. That is not as bad now. It was not antibiotics that made it better though. It just eased up on its own.
Posted 4/23/2013 4:15 AM (GMT 0)
I was prescribed the generic form for Diamox  2 250 mg tabs 2x day with 1 500 mg of Vitamin C and 1 Potassium Chloride.  you take them together.  2 x's a day.  From what I understand the Diamox is a medicine used for elevation sickness, but it has really helped.  I was barely able to get out of bed before. I hope that helps.

 

Posted 4/23/2013 6:24 AM (GMT 0)
i have done 6 weeks doxy, 9 weeks clairithromycin, now on iv rocephin and did 2 weeks with rifampin too.
the last 2 weeks on the rifampin has been murder on my head! i stopped taking it cause i cant live with that pain any longer, i was in the ER yesterday and 3 doses of diluadad didnt help, had to get some NSAID thing and ativan and go home to bed. today ive been living on imitrex
Im at my wits end here with the pain, ill try anything. ill ask to try diamox tomorrow along with some other triptans and pain killers...
ughhhhhhhhhhhhhhh. i want to treat babesia next, i think that is a headache causer...
Posted 4/23/2013 2:01 PM (GMT 0)
I wonder if the rifampin was hitting something?

I have taken it upon myself to increase my mepron intake from 1 tsp 2x a day to 2tsp 2x a day even though my doc says I dont need more. I've heard from many others its not enough especially for the Duncani strain of Babesia.
Posted 4/23/2013 7:00 PM (GMT 0)
Lymer: an MRI. I had a two hour MRI that looks comprehensively at veins and blood flow.

However, it was first suspected from a CRT scan.( Computerized Regulatory Thermography.) This showed abnormal blood flow issues to the brain, but not the actual specifics. AFter that, the doc referred me to a neurologist well versed in CCSVI and I had the MRI.

I do not think an x ray would do it. Because it is looking at veins and blood flow dynamics.
Posted 4/24/2013 12:17 AM (GMT 0)
i dont know if the rifampin was hitting something or i was getting the headache side effect on top of my headache... cause it started right away. my herxing usually takes 3 days to hit.
ive had no real bad herxes from the IV ceftriaxone. i think i got herx from artemisinin.
i did a lab for babesia PCR and a CD 57. none of which my doc had ever heard of, but he does what i tell him to. i know thts what my infectious doc will order, well i doubt he is insightful enough to order CD 57, but he would wait weeks to order it, so i wentahead and did it today.
not htat i want babesia, i just want to find it if its there and treat it.
i want irrifutable proof so that doc knows IM RIGHT and he has been WRONG the whole time.
most importantly i want my life back
i managed to get my doc to sign a student loan dismissal for disability tho.. so today was a 'good day' even tho im still a Lymey and dont feel good...
i need a new mri, ill ask about this ccsvi thing too
Posted 4/24/2013 1:15 AM (GMT 0)
For those interested in ccsvi: It is not well known in the standard medical community. if you ask a normal doc they will likely not know about it. it is relatively new, even in the lyme community.

I can give a referral to the neurologist in Las Vegas that I saw, if anyone is interested.

good luck!
Nan
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