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Posted 5/12/2016 11:54 PM (GMT 0)
There are a lot of older posts on this but thought I'd get some recent thoughts...

Anyone else have a chronic headache?
Mine is 24/7 and has been for over 2 years now.

What other symptoms accompany your headache and what treatments helped or hurt them?

Is it weird that I don't really have many other symptoms?

Just a bit of ringing in the ears and some weakness in my one leg... the short list of symptoms (albeit disabling) always made the Lyme diagnosis kind of cloudy in my opinion, but maybe not?

Thanks for your thoughts!
Posted 5/12/2016 11:59 PM (GMT 0)
I had horrible head pain. I call it that because I have had headaches all my life since age 13. I had migraines for years also. My lyme induced head pain was at the back of my head near my right ear. I was given everything for it because it hurt so badly. Stress pills, anxiety pills, and finally narcotics. Nothing touched it.

I honestly think Japanese Knotweed (crosses the blood brain barrier) and Red Root (took away the swelling in my lymph nodes) were what helped me.

Neither one of those will hurt you if you want to give them a try.

The dosage is just like any other tincture, 1 drop one time a day and VERY slowly move up. Only doing one herb at a time.

Just a thought.
Posted 5/13/2016 12:38 AM (GMT 0)
Hi mustardseed-

So sorry about the headaches - what kind of headaches are they? Are they 24 hrs or do you know of any triggers for you? Are they severe?

I used to get them very frequently, then they turned into migraines, and then more recently they became regular headaches. I sometimes have light sensitivity with them and sometimes they can be debilitating. I feel your pain.

But once I started treatment (I also stopped working and could therefore focus more on what was going on with my body AND I was keeping track of symptoms). I was able to notice differences between the different types of headaches I get and I was able to notice more correlations between the headaches and triggers. For me, the following applies but might not be the same for everyone:

- Some feel like a dull but consistent outward pressure at the base of my skull like my pillow that I'm laying my head on is actually a block of concrete -
generally, this means I'm dehydrated so I start drinking a lot of water

- some are more pulsating pressure towards the top or front of my head and feel like someone hit me with a 2x4 -
I think this is inflammation from neurotoxins at work so I use Japanese Knotweed as PeteZa mentioned, I increase my detox but also sometimes it's dehydration

- some feel like someone is stabbing me in the brain with an ice pick and is usually on one side or another and kind of roaming -
this is new for me and the pain is alarming - I think is the abx hitting lyme or bart in the brain so I up my Pinella and bur bur tinctures I use for brain detox

- some are between my eyes or behind my forehead or in a band across the top of my head that I think are tension headaches (I would sometimes wake up to these types of headaches due to clenching/gnoching/chomping/grinding that I used to do a lot but only intermittently now because of my TMJ) -
this is a tension headache for me so I try Excedrin or tylenol, meditation, hot shower or compress, gently rubbing my temples

- some are behind my face (sinuses) -
for me this is due to a fungal infection and so I increase my antifungals.

This past weekend I had three different headaches at the same time--and for 3 different reasons. I was able to detox and hydrate them into submission. Nasty stuff.

And then there are the migraines that come with other symptoms (auras, nausea, etc.) and this is a whole other ballgame.

-p

Post Edited (Pirouette) : 5/12/2016 6:43:01 PM (GMT-6)

Posted 5/13/2016 1:44 AM (GMT 0)

PeteZa said...
I had horrible head pain. I call it that because I have had headaches all my life since age 13. I had migraines for years also. My lyme induced head pain was at the back of my head near my right ear. I was given everything for it because it hurt so badly. Stress pills, anxiety pills, and finally narcotics. Nothing touched it.

I honestly think Japanese Knotweed (crosses the blood brain barrier) and Red Root (took away the swelling in my lymph nodes) were what helped me.

Neither one of those will hurt you if you want to give them a try.

The dosage is just like any other tincture, 1 drop one time a day and VERY slowly move up. Only doing one herb at a time.

Just a thought.

Perfect, I just ordered some Japanese Knotweed, along with a bunch of other Buhner-recommended herbs, today. I bought the powdered Japanese Knotweed from 1st Chinese Herbs. I didn't really like the idea of adding a ton of alcohol tinctures to my heavy abx schedule, so hopefully this works okay. I'll just add like a 1/16 teaspoon at a time.

Pirouette said...
Hi mustardseed-

So sorry about the headaches - what kind of headaches are they? Are they 24 hrs or do you know of any triggers for you? Are they severe?

I used to get them very frequently, then they turned into migraines, and then more recently they became regular headaches. I sometimes have light sensitivity with them and sometimes they can be debilitating. I feel your pain.

But once I started treatment (I also stopped working and could therefore focus more on what was going on with my body AND I was keeping track of symptoms). I was able to notice differences between the different types of headaches I get and I was able to notice more correlations between the headaches and triggers. For me, the following applies but might not be the same for everyone:

- Some feel like a dull but consistent outward pressure at the base of my skull like my pillow that I'm laying my head on is actually a block of concrete -
generally, this means I'm dehydrated so I start drinking a lot of water

- some are more pulsating pressure towards the top or front of my head and feel like someone hit me with a 2x4 -
I think this is inflammation from neurotoxins at work so I use Japanese Knotweed as PeteZa mentioned, I increase my detox but also sometimes it's dehydration

- some feel like someone is stabbing me in the brain with an ice pick and is usually on one side or another and kind of roaming -
this is new for me and the pain is alarming - I think is the abx hitting lyme or bart in the brain so I up my Pinella and bur bur tinctures I use for brain detox

- some are between my eyes or behind my forehead or in a band across the top of my head that I think are tension headaches (I would sometimes wake up to these types of headaches due to clenching/gnoching/chomping/grinding that I used to do a lot but only intermittently now because of my TMJ) -
this is a tension headache for me so I try Excedrin or tylenol, meditation, hot shower or compress, gently rubbing my temples

- some are behind my face (sinuses) -
for me this is due to a fungal infection and so I increase my antifungals.

This past weekend I had three different headaches at the same time--and for 3 different reasons. I was able to detox and hydrate them into submission. Nasty stuff.

And then there are the migraines that come with other symptoms (auras, nausea, etc.) and this is a whole other ballgame.

-p

Thanks for the kind words.
Ya they (or rather it) is 24/7. I'm not sure I have as many different types as you, but your experience is very interesting.

Mine is like a pressure-like pain. It feels like my head is in a vice that is tightening. Sometimes the pain is on the sides of my head, sometimes it's on the crown of my head, and sometimes it's both. After 2+ years I haven't found anything that makes it better, except sleep sometimes slightly eases the pain temporarily.

No migraine symptoms though thankfully :)

Did both of you have other symptoms along with your head pain?

Do other people around here have headache as the predominant (or sometimes only) symptom?

Most people with Lyme headaches also seem to have tons of other symptoms it seems.

Thanks again!
Posted 5/13/2016 1:50 AM (GMT 0)
It's good that you don't sense correlation with a bunch of other symptoms. Hopefully that helps you trouble-shoot more quickly.

The way you're describing it, sounds like inflammation so it will be interesting to see how well you do on the japanese knotweed. Let us know.

I love the stuff. I actually lost weight after my first couple of weeks on it due to high inflammation throughout my body at the time. I've worked up to high doses now.

Also - drink drink drink. Set a pitcher or bottles of water in the fridge or on the counter at the beginning of the day--that way you can better gauge how much you're drinking throughout the day.

-p
Posted 5/23/2016 11:04 AM (GMT 0)
mustardseed2, like you, I have a constant headache of one type or another--frontal, sinus, neck area or on the right side along the occipital nerve. And sometimes I have more than one going on. My headaches are not severe, but I can't function unless I get rid of them. I can get total relief by using ice or by taking Ibuprofen. I take way too much of this stuff, but I can't stand that constant nagging pain.

Other than sinus headaches, I never had a headache until I got one that never goes away on its own. I think it started around the time I was diagnosed with Epstein Barr, which was in 2012.
Posted 5/23/2016 2:34 PM (GMT 0)
Hey Jane, nice to know I have a fellow headache sufferer (or not nice for either of us I guess :p)

The ice and Ibu helping sounds like inflammation is a factor.
Do you think co-infections have any impact on your headache?

I too am positive for Epstein Barr. But so is 90% of the US adult population according to the CDC. I think the presence of Lyme and/or a coinfections (and the immune response, or lackthereof) gives EBV a boost, as I'm sure it's as opportunistic as all these other bugs.

I personally haven't done anything to try and fight EBV directly.

My co-infection panel from Igenex was all negative except for anaplasmosis. Doxy didn't affect anything. I'm convinced I have Babesia because I seem to herx on Malarone, Beyond Balance MC-BAB-2, and artemisinin. But after 6 months of treatment there's been no improvement.

I could also have Bartonella. Known for headaches. As is Bb. It's all so confusing :p
I'm actually looking into buying my own microscope so I can get a look at these buggers myself.
Posted 5/23/2016 2:57 PM (GMT 0)
You asked about other symptoms and the one that went along with the head pain and went away when the head pain went away was plugged ears. Or full ears. Or whatever it's called. It felt like I had gone up in elevation and my ears would not pop. I think it was totally related to my head pain. Also tenderness in my jaw. I think this was inflammation also. And when I turned my head from side to side - horrible grating noises in my neck.

I sure hope the Japanese Knotweed and Red Root helps. I did both of those so very close together, I cannot tell which was the biggest helper. Maybe it was a combined effort?

Good luck. My head pain had me crying on many days. I would try and stay busy so I distracted myself and did not focus on the pain, but the minute I sat and was calm, I could feel the pain and I would cry.
Posted 5/23/2016 3:01 PM (GMT 0)
Hey Pete, how long were you on the Japanese Knotweed and Red Root before you noticed any difference?

I know everyone's different and I don't expect the same results, just genuinely curious..
Posted 5/23/2016 3:18 PM (GMT 0)
I so dislike giving my timeline. I am me and you are you. I don't want you to get disappointed that your protocol is not working simply because mine worked faster. I have been a super healthy person for over 20 years. I have detoxed for over 20 years. I got lyme and was way ahead of the game because I started so soon on a protocol after being bit. I hate to give my stats for fear of influencing you one way or another. But I dislike not giving you an honest answer more. I just don't think my timeline is that helpful..... however,

I was only on them for about 2 months and I then had 5 days of no head pain. BUT then I ran out of Red Root (brain fog) and had to wait a week for it to arrive. My head pains were off and on for months after that.

There was not a day where all of a sudden Poof* the head pain was completely gone for months. My symptoms were very much controlled by weather and the moon at the end. If there was a low, my head hurt and if there was a full moon, my head hurt. It took me quite awhile to finally say, "they are gone."

But even now I can tell where that head pain was and I know I still can be affected. So moon or weather time I am super careful not to overdo anything except maybe detoxing a tad more. I now know what my triggers are and can prepare.

Lyme teaches us our bodies so very well.
Posted 5/23/2016 3:33 PM (GMT 0)
Yup 100% understood. Would never expect to get the same results as someone else. So many variables within our own bodies, our own environments, our own treatments, and our own bugs inside us.

Thanks though!
Posted 5/23/2016 3:49 PM (GMT 0)
You are so very welcome.

I did keep a journal to see my progress. That was hopeful to see even the tiniest improvements.

I avoided sad things, the news, movies. I was sad enough.

I put myself in first place. I warned those around me that I would be treating a patient, ME! I tried to keep up on my house duties, but I refused to feel guilt if I did not do something. I had to chill out as an OCD, Type A, Perfectionist, overachiever personality. Chill Out was the hardest thing I have ever done.
Posted 5/24/2016 1:34 AM (GMT 0)
Mine started with a pain in the back of my head on the right side. That was 1.5 years ago. It went away, but then returned about 6 months later and moved to the top right side and for the most part if the head is going to hurt its typically the top. Sometimes it is so bad that it makes me dizzy. This part just started this week. Maybe because I've upped the treatment (and the detox). I have learned the word "detox" on this site 😏. This is also where I found out about the Pinella brain cleanse and the burbur. They are so helpful so I must thank the moderators for that nugget of information. My headaches seemingly cycle at this time. Early am and bed time.

I also ordered the red root and the Japanese knot wood. Again little nuggets of gold that I found here. I'm so hoping that they will work as well.
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