Lyme Disease and Headaches

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CajunGrl
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Date Joined Mar 2009
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   Posted 11/30/2009 11:42 PM (GMT -7)   
Anyone else have bad headaches since contracting Lyme Disease? I suffer with them really bad. It's not the "usual" headache, it is very intense and causes me to pretty much lay down for the day. Advil sometimes isn't enough. I usually get a really intense pressure/pain at the base of my skull, right above my shoulders....where my neck meets the bottom part of my skull.

I've tried so many things to ease them when I feel them coming on and nothing seems to work. Once they start, I'm done for the day. I'm assuming it's the inflammation that Lyme causes that brings these headaches on?

Does anyone else get these bad headaches? What do you do/take for them? Does changing ones diet help?

Any suggestions appreciated.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


JennInPA
Regular Member


Date Joined Sep 2009
Total Posts : 228
   Posted 12/1/2009 5:50 AM (GMT -7)   
Do you see a chiropractor? I used to have headaches for months at a time, I went to every doctor, specialist, there was and then went to a chiropractor and that was the only thing that took it away.

Other things that may not be helping... are you drinking lots of water? staying away from sweetners & aspartame, carbs?

I used to suffer from migraines, I get violently ill with them. Headaches are worse than muscle pain for me. They knock me out. I know caffiene isn't good for lymies, but they tell you when you have a migraine to drink caffiene or take Excedrin with caffiene in it. The other thing that helps is apple cider vinegar.

Hope you get some relief soon.
“You must be the change you wish to see in the world.” -Gandhi

http://lymeactually.blogspot.com/


Traveler
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Date Joined May 2007
Total Posts : 30032
   Posted 12/1/2009 8:42 AM (GMT -7)   
Hi All!
I have a particular issue with headaches as well - they seem to come in all shapes, sizes, & colors!! Depending on what type, I have learnec a few things that can help - at least some of the time.

For the ones I can, I just try to get through the day. Sometimes for the moderate ones, ones that interfere when I need to think, sometimes advil will help, only I need to take them @ or near prescription strength.

For the more severe ones (usually at the base of my skull &/or just very sharp pains), sometimes ice wil help.

If I believe it is from a tension headache (which is the case more than we really know a lot of the time, since we Lymies don't do stress) I will use heat.

Understand though, these only work some of the time for me **roll eyes** - too many times nothing really helps but going to bed or sitting quietly (NOT easy for me!!).

Hope this helps some.
~Trav!
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 12/1/2009 5:47 PM (GMT -7)   
I get terrible headaches too. Lately they've been focused on the base of my skull, or the left side of my head near my temple. Not much helps- for the mild ones advil sometimes works. I also get headaches that feel as if they're on the surface of my skull, instead of inside it.

Nicky

Willowrose
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Date Joined Oct 2009
Total Posts : 699
   Posted 12/1/2009 8:10 PM (GMT -7)   
Headaches. The ones I get at the base of my skull often involve neck and shoulder pain. Those are best relieved by a visit to the upper cervical chiropractor. I've also used alternating hot/cold compresses to get some relief. Accu-pressure can help. I've never tried accupuncture. No pain killer I've tried will make enough of a dent to bother with.

What I now think of as my Lyme headaches are sinus based. I'm working very hard to keep those from getting bad; they can reach migraine intensity. Using a netti pot or other sinus rinse product daily helps a lot. I also use a steamer. If I must resort to meds, sinus medication containing an expectorant and sudafed work best for me.

The surface of the skull headaches are probably the most intense headaches I get. I have thought they originate from TMJ. For those I see a physical therapist. He uses an electrical pulse machine to disrupt the nerve pain. Again, heat/cold alternating can help.

I'm not willing to take a narcotic pain reliever, and nothing else I've tried takes away the pain, so these are the things I've learned to do. Sometimes warm or hot water running on the headache spot feels good, too.

Finding out I had Lyme and coinfections at least gave me some hope that I will not suffer with all of these things forever. It will sure be nice to get rid of some of these painful conditions. Sometimes I think having a body isn't much fun at all.

Rose
I have Lyme; it doesn't have me.


CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 12/1/2009 10:51 PM (GMT -7)   
A chiropractor is probably who I need to see. I used to get free adjustments but I worked for a chiropractor. I don't think my insurance pays much for adjustments either. It was like so much a month and I'd have to come out of pocket with a lot of it. I'm too sick now to get out and see one. Blah!!

My headaches are just like all of yours. I'm going to try some of your suggestions and see if it helps.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


Deejavu
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Date Joined Aug 2005
Total Posts : 4227
   Posted 12/2/2009 5:04 AM (GMT -7)   
Hi CG,
 
It's possible that the headaches are caused from an overload of ammonia in your body..   Ammonia causes more havoc than anyone could ever guess..   I don't know for sure if that's the problem but it just may be possible..
 
What helped me was taking Dr. Jernigan's Neuro-Antitox CNS/PNS formula..   If you decided to use alternative medicine then you have nothing to lose by trying that product to see if it helps you...
 
Denise


It's all about the Immune System mixed with a large dose of Positive Thinking and Daily Detoxing   ~  Pay It Forward!!
 
This song is about my years with chronic lyme since 1995 and being in remission for over 3 years:
 
 


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 30032
   Posted 12/2/2009 10:38 PM (GMT -7)   
Rose,
you might try rubbing a little peppermint oil on the joint of the jaw. That can really help me sometimes!
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 12/2/2009 10:45 PM (GMT -7)   
Thanks, Traveler. I've put that on the back of my neck sometimes, but never thought to put it on my jaw joint.

Rose
I have Lyme; it doesn't have me.


WestCoastBabe
New Member


Date Joined Dec 2009
Total Posts : 8
   Posted 12/3/2009 12:28 PM (GMT -7)   

CanjunGrl,

Again, I haven't been diagnosed with Lyme (my little disclosure), but I do get these headaches.  I've tried many prescription and OTC meds but I've found nothing works as good as 2-4 Excedrin Migraine and lying down with an ice pack at the base of my skull and another over my eyes.  It has to be Excedrin Migraine; there is something about the caffenine and asprin combination.

WCB


CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 12/3/2009 6:07 PM (GMT -7)   
WCB,

I've been wanting to try Excedrin. I will look it up to see what ingredients are in it. I can't take anything with acetaminophen in it.

Thanks:)
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


WestCoastBabe
New Member


Date Joined Dec 2009
Total Posts : 8
   Posted 12/4/2009 2:03 PM (GMT -7)   
Canjungrl,
Just to stress, for me, it has to be Excedrin Migraine - not regular excedrin, not tension HA, etc. There's something about the combination of the caffenine dose and the asprin together. I suppose, if you can't take caffine it'd would be worth trying the regular excedrin.

Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 12/4/2009 4:49 PM (GMT -7)   
my worst headaches are at the base of my skull. When I get them if I turn my head my neck crunches. I have one of those pads you can put in the fridge. Don't think it makes them better but the change in temp makes me feel ok. Hope this helps. Those headaches got worse for me when I started mepron to treat possible babs.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 12/4/2009 6:46 PM (GMT -7)   
WCB,

Okay thanks!
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


gorbybelle
Regular Member


Date Joined May 2009
Total Posts : 147
   Posted 12/5/2009 11:04 AM (GMT -7)   
I have a lot of pain at the base of my skull - my shoulder muscles always seem 'easily aggrevated' - I get stabbing headaches  - I am getting to the 'end of my tether' with all this pain - I think I have tried just about every 'therapy' going - do you folks think I should go back on antibiotics - LLMD said I should go to my doc. and get 'inflammatory' response checked or something like that?!  I am running out of the energy needed to find something to stop all this b........! pain.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 30032
   Posted 12/7/2009 9:07 PM (GMT -7)   
Hi Glorybelle,
I know what you mean. I seem to have those same easily aggravated muscles in my upper back, shoulders & neck. Not much really helps when they really get going,

although I have found that if I don't wait until too late - I can get some decent relief by using an ice pack first to get the swelling down, then immediately onto heat to get those muscles to relax a bit.

Pain meds don't touch that pain. =( So I figure there's not much reason to scream for pain meds, huh?
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


TimQ
New Member


Date Joined Jan 2013
Total Posts : 1
   Posted 1/21/2013 8:19 PM (GMT -7)   
Tiger Balm on the temples always works for me. Doesn't fix the dizziness, but always helps with the headaches and almost immediately.

julymorning
Veteran Member


Date Joined Jul 2015
Total Posts : 1334
   Posted 5/9/2016 1:21 PM (GMT -7)   
My headaches are mostly like a cap, covering the top of my head, forehead, and sides of my head with increased ringing in the ears. (more than the usual). Sometimes when I massage my forehead, temples or bridge of my nose I hit very sore areas that feel like bruises with no darken skin.

Sometimes the headaches are so bad I can't tolerate light and I feel like I'm close to throwing up.
I'm having a bad one now making me close to tears I can't hardly take them anymore. Nothing makes them go away.
Fibro diagnosed- but Lyme test positive '92, IBS, Osteoporosis, COPD, Hypertension, GERD, degenerative disc disease, Rocky Mountain Spotted Fever positive Spring 2015, Congestive Heart Failure, osteoarthritis.

Pirouette
Veteran Member


Date Joined Mar 2014
Total Posts : 4099
   Posted 5/9/2016 6:27 PM (GMT -7)   
Hi julymorning -
This thread is pretty old - not sure if you saw the date on the most recent post - from 2013.

But it's a good topic to discuss - we can continue it here or you can start a new thread with the same subject. Here are a few suggestions I have for you -

First, I am so sorry you're suffering those painful headaches. I know you're in a lot of pain so I hope that we can get you some relief.

Last week I was dealing with swollen lymph nodes at the base of my skill and around my neck - most have gone down but the ones on my head haven't. And this weekend I had 3 different types of headaches at the same time - a dull pain on the top of my head like someone had hit me with a 2x4, a pressure pain at the back of my head like I was lying on a pillow of concrete, and stabbing pains throughout the top right side of my head. It was excruciating. I drank lots of water, took my detox herbs and my binder - and this helped tremendously.

I shared most of the following with another poster here so sorry for the repetitiveness but there are a few possible reasons for headaches that are common with our treatment:

The sensitivity to light and nausea is common for migraines - do you have a history of migraines? I sometimes get migraines and sometimes I get different kinds of headaches that include migraine-like symptoms.

The dead debris and toxins are trapped once the abx hits them until they can be released so detoxing is critical. What are you doing for detox? A binder is very helpful to pull the toxins out of the gut and there are some good herbs to help detox the brain - I use Pinella and Parsley quite successfully.

You also might have a little swelling too - Japanese Knotweed is good for swelling.

Headaches are often triggered simply from dehydration and abx can be naturally dehydrating - so drink copious amounts of water throughout the day, have it next to your bed at night. Embrace the additional trips to the toilet - peeing is very detoxing.

The pain in the facial area is commonly sinus pain - this could be from a sinus infection or swelling/inflammation. The infection could be bacterial or fungal. Are you prone to sinus infections?

Another culprit of headaches is yeast/fungal overgrowth - the y/f creates neurotoxins including acetaldehyde and other toxins that cause headaches. You mentioned you were on Nystatin - if it is the pill or liquid form, it's pretty weak and might not be a strong enough amount of the Nystatin (they are manufactured with mostly fillers and a little bit of Nystatin) so you might not be on a strong enough dose. Do you have any other symptoms that might indicate an overgrowth? If so, try switching out to Pure Nystatin Powder 500,000 units (let me know if you'd like more info to share w/ your LLMD).

You probably need to step up your detox as best you can but you are also on a pretty intense quantity of abx. You might also talk w/ your LLMD about stepping back your treatment if the headaches continue much longer. A minor herx is to be expected as we incorporate new components of our protocol or increase doses, etc... but major herxing and for long periods is not conducive to healing - you have to measure the pace at which you are targeting the infection with how well you are able to flush the debris out of your body and try to match them both. Sometimes it takes a little experimentation with both.

Hope this is helpful - let us know if you have any other q's -

Again - if not enough people respond you might want to start a new thread. Hopefully you can get some good feedback.

-p
Chronic late-stage lyme—likely infected in 2000; Clinically dx 3/2014 w/ Babs, positive for Bart, CDC-pos for Bb. Multiple viruses & GI/immune treated first; started AL-Complex in May, A-Bart & A-Bab in July; 11/2014 IV port installed, started Rocephin; added vancomycin 3/2016
DETOX: Pinella/Burbur/Parsley/Milk thistle seed/Burdock root cocktail; japanese knotweed, L-5-MTHFR, LMN-V-II, probiotics

julymorning
Veteran Member


Date Joined Jul 2015
Total Posts : 1334
   Posted 5/9/2016 8:03 PM (GMT -7)   
I don't mind continuing this thread, we pull it to the top anyway with new comments. So much to respond to, thank you for all the suggestions!
I can't afford a LLMD, and my Internist has the typical attitude so as per my much earlier post, I am on my own. I get loads of information about Lyme and co-infects and world wide mess of the medical side of it from a European friend through fb.

My main detox item was charcoal tabs that I had to discontinue taking because no matter how long I waited to take it, it prevented my blood pressure/congestive heart failure meds from working. Since stopping the charcaps, I've gotten back on tract there. I'm still looking for a proper brush (tampico)for skin brushing. I drink apple cider vinegar and water with lemon. I drink too much liquids/water and have been told I need to cut back as my kidneys can't keep up. I've been trying to chlll the shower water down just before I'm ready to get out of it, and I use shower scrunchies always to soap myself for further skin detox.

I'm not familiar with symptoms of yeast/fungal overgrowth or acetaldehyde toxicity.

I haven't had a sinus infection for some time. Though I commented yesterday I think this Spring pollen is making my COPD/shortness of breath worse.

Taking serious note of your mention of Japanese Knotweed. I've seen threads about it and haven't read them yet.

also taking note of the Parsley (is the dried stuff I put in food prep the same?) and Pinella (new word for me). Thank you! I do not have a history of Migraines or even headaches. This is an entirely new problem for me. I attribute it to encysted Lyme bacteria in my brain because I developed disturbingly strong memory misfunction, speaking problems, and loss of brain to finger/hand connections. There is something else that I can't at the moment but a name to, I've gone blank.

It finally faded mid-afternoon. (today's headache). Incidentally I have to see a Neurologist in June as part of the deal I made with my Internist so that he would prescribe the Flagyl He was very much against doing so. Afraid of doing so he said. Even though he is the one that gave me the protocol sheet from the Mo. LLMD.

All of this head related stuff really got fired up during my 3 month abx hiatus. Wish THAT hadn't happened, because I had finally gotten to a point where I thought I was definitely going to live (lol). But between Winter weather, my Internist being off for several days every time I tried to get an appointment, plus my own totally down times where I just couldn't bring myself to go anywhere.

I've not ever taken Nystatin.

I need a reliable shopper. Most of the time if I can manage to pull myself together to drive the 20 miles to where I can buy what I need, I have several errands to catch up on and wear out before it's anywhere near half done.
But I don't have anyone that can do it but me.

Post Edited (julymorning) : 5/9/2016 9:08:18 PM (GMT-6)

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