Occipital neuralgia from Lyme disease?

I haven't been officially diagnosed with occipital neuralgia, or even migraines for that matter, but I do believe I have been getting them. (Migraines run in my family...my mom has trigeminal and occipital neuralgia and receives nerve blocks/Botox, my aunt has seizures from migraines.)

The only thing I know for sure is that my head pain is in the occipital region (both sides of my head) and when it's bad...it's really bad.

Hope you feel better!

I also have not been "Officially" diagnosed with occipital neuralgia, but there's not doubt that I get it, along with a lot of other things - I just don't go to the doctors often. During the 2 years that I didn't have these infections though, I had zero issues with occiptal pains, but they came back when I got infected again along with a lot of my other nerve issues.

Lyme and Bartonella can both cause this as they both can attack the nerves.

If a person can stand to deal with them, I don't suggest doing anything like nerve blocks, as you will likely heal with treatments for these infections. No need to do something permanent for a temporary condition if we can help it.

Mustard seed. I've recently been having health issues since October of last year. Then came the horrible migraines in December. I was in and out of the emergency room. I thought I was dying. Was sent to a neurologist and MRI was clear but she diagnosed me with occipital neuralgia. It is extremely rare for someone my age to have it. (I'm 23) Especially if there's no trauma or something compressing the nerves. Even more rare that I have it on both sides. I also get the same pain in my face but neurologist won't diagnose me for the fact it's rare to have occipital neuralgia and trigeminal neuralgia. I can't have nerve blocks because I have reactions to steroids so I don't want to risk it. So my only options is pain medication & muscle relaxers. Lately I can only take a aspirin because of my other symptoms. (Weakness, extremely sleepy, faintish, etc..

Post Edited (Traci) : 3/21/2017 8:25:25 AM (GMT-6)

It could be from your nervous system being attacked by Bartonella or Lyme. Lyme rarely is the only infection passed at the time. Can you use benadryl? If so, it depresses the central nervous system and can be used occasionally to help ease our way through things like this. It occasionally helps my migraines and occipital issues.

Detoxing also helps me a lot. If you haven't yet started a detoxing routine, I would definitely encourage you to do so.

This along with a chronic prostatitis diagnosis was what i got 20 years ago.....had the nerve block done.....the headache and pain eventuslly went away...then 10 years later it was back and neck pain 1 sided..had no idea it was prob. Lyme the whole time....just got diagnosed last year..

I have not......why do u ask??

Yes!!!! Just recently i have been thinking that approach....the pervious llmd i was seeing started adressing in and it fresked me out and i stopped going.....seeing another next month who does adress it....i have mild pain and numbness in my left side of my face?!?! Also groin pain middle and low back pain...muscle twitching depression feet pain...

The things we simply can not overlook is that not everyone with facial pain will have dental issues. Is it something to get checked out? Yes, if you have the money, of course - but it doesn't mean that treatment in that manner will resolve the facial or jaw pains, as they can be from Neuro Lyme. Many of us have these pains and not many have the need to see a biological dentist - or the resources to do so.

I have both a constant burning and lightning bolt type pain in my face and jaw, but as soon as I heal from these infections, the pains are gone. They wouldn't leave if I still has dental issues. So, while it's wise to check out other possibilities, it surely doesn't mean that other possible causes are what's going on - Lyme and Bart both attack the nervous system.

Yes occipital neuralgia, same nerve burning/sharp pain in face and teeth. They said it's tmj but I've never had these problems up until all my other symtoms appeared. i dont think its a quinncidence all these things just started happening. 7 months ago I was healthy hardly ever got a cold. Then all of a sudden I had my crash. Doctors seem to only want to treat the symtoms individually. I'm not sure why they aren't looking at the bigger picture. But I'm convinced it has to do with lyme/coinfections. I will see an infectious disease doc next week so hopefully he will be understanding and try to help me.

Mustard Seed said...

Traci said...
Yes occipital neuralgia, same nerve burning/sharp pain in face and teeth. They said it's tmj but I've never had these problems up until all my other symtoms appeared. i dont think its a quinncidence all these things just started happening. 7 months ago I was healthy hardly ever got a cold. Then all of a sudden I had my crash. Doctors seem to only want to treat the symtoms individually. I'm not sure why they aren't looking at the bigger picture. But I'm convinced it has to do with lyme/coinfections. I will see an infectious disease doc next week so hopefully he will be understanding and try to help me.

At one point I self-diagnosed my chronic headache as occipital neuralgia, but later ruled it out after getting a bunch of nerve blocks with no effect.

All I can say is if you suspect Lyme, get some treatment, whether herbal or pharmaceutical.

I wasted 2 years of my life going from doctor to doctor trying to track down what was causing my headache... always focusing on the symptom, never digging for a deeper cause.

Finally saw an LLMD. IGENEX positive and Anaplasma positive. Wasted two years before I started going after the actual problem. Wish I could go back in time.

Excellent advice Mustard!

Generally speaking, ID docs are not the best doctors to see for these infections, unless they have had ILADS training - there is a small handful of ID docs that have "left the herd' and chosen to embrace the changing science.
​
ILADS vs IDSA:
www.clinicaladvisor.com/controversy-continues-to-fuel-the-lyme-war/article/117160/

archinte.jamanetwork.com/article.aspx?articleid=226373

www.ncbi.nlm.nih.gov/pmc/articles/PMC2901226/

In case this information has not been shared with you yet:
​
​​
​​
For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.

​​ You can go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​

​
You can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state and area that you would like to find a LLMD in and I will see how close I can get to your location.​

​​
​​
You can start a new thread titled something like "Looking for LLMD in the ​​
(insert the nearest larger city & state)​​
​​
area". Members can email you about the LLMD's that they see in that area if you have your email enabled. We don't allow doctors names to be posted though.

​​
You can email the Tick-Borne Disease Alliance at
​[​​url]​[email protected]​ for LLMD referrals

​​
​​
ILADS has their own referral system as well:
​​
ilads.org/ilads_media/physician-referral/

And www.LymeDoc.org

Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey: www.ilads.org/lyme/treatment-guideline.php

Traci said...
Yes I'm already changing my diet up. Looking into natural treatments until I can get seen and diagnosed. My primary care doctor did give me a western blot test. It came out negative. I was also on antibotics a couple of days before so not sure if that could be why or just for the simple fact the test she did isn't 100% accurate. I was on antibotics for a sinus infection which I doubt I had. Ent gave them too me anyways since I'm having pain in the sinus areas. When I was on the antibotics all my symptoms got so bad. I couldn't take a few steps without being short of breathe. Which can be a good indication that I have lyme. But I have a few questions. Did you or anyone else test negative before testing positive? And if I go through Igenex what test/package should I start out with? Also could it be possible to not have lyme but have the co-infections?

Just having your doctor tell you the western blot was negative isn't enough. It's likely they're going by CDC criteria for Lyme, which is complete non-sense.

For instance, you could have positive bands at 31, 34, 39, and 41, and the Western Blot would read negative by CDC guidelines. Your doctor tells you it's negative, and you move on with you life.

Any LLMD, or anyone who knows anything about Lyme, would call that test result a resounding positive.

See if you can get the full test results from your doctor.

Edit: for Igenex tests, you'll want a Western Blot IGM & IGG (tests #188 and 189), and a full co-infection panel (test #5090... or 5095 if you want the additional Bartonella FISH... probably worth it but don't know the price difference).

Post Edited (Mustard Seed) : 3/21/2017 2:18:05 PM (GMT-6)