LymeNet Flash: Odd headaches/faceaches

This is topic Odd headaches/faceaches in forum Medical Questions at LymeNet Flash.

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Posted by LymeinPrincetonNJ (Member # 7696) on :

Last week I was in the hospital getting IV antibiotics for Lyme Disease (just diagnosed) and related menegitis. I'm out now, non-febrile, and on Doxycycline. However, I'm still getting odd pains every other day that start off like a hot poker pinching the bridge of my nose and then end up with a headache, faceache, and sometimes, neck stiffness on my left side. Taking OTC NSAIDs doesn't relieve the symptoms. Does anyone else experience these kind of pains? Is this still indicative of the infection in my body or perhaps a co-infection?

PS I also lost a significant amount my hearing in my left ear and some in my right. I understand that this is quite common with Lyme. I'm just hoping it's not permanent.

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LymeinPrincetonNJ

Posted by Naomi (Member # 4846) on :

I think I know what you are talking about. Tell me if this sounds familiar.

When it happens to me my whole face (on one side) hurts. It makes my eye, cheekbone, teeth, nose, head, jaw and neck hurt on that side.

My doctor finally figured out that my Trigeminal nerve (which runs under your ear) was getting inflamed. He Prescribed Indomethacine and Prednisone which I take ONLY when the pain flares up. It works wonders!

I hope you figure out exactly what is going on and how to fix it!
Naomi

ps. My headaches were so bad that I could barely handle the pain.

Posted by slcd (Member # 5708) on :

I do get pains like this sometimes.

As far as whether the infection is still in your system . . .

Unless caught immediately, often Lyme disease becomes harder to treat. It can be a chronic infection. At this point it needs to be treated with long-term antibiotics in that case. Treatment can last for months or years depending on each individual case.

I would assume (which we all know what they say about that! ) That if you were in the hospital being treated IV, you were probably not diagnosed immediately.

If this is true, you should see a Lyme Literate Doctor (LLMD) as soon as possible in order to be properly treated.

Posted by LymeinPrincetonNJ (Member # 7696) on :

Thank you for your responses. I'll have my doctor check out that nerve that runs under my ear - it sounds just like you described.

Also, I know that I was in the late disseminated stage of Lyme. I'm pretty sure I found a tick on me in April. Since that time I made 4 trips to the emergency room and 3 trips to my PMD. When the rash finally showed up - last Monday - it wasn't a typical EM rash the associate at my PMD's office refused to treat me. I ended up back at the ER and the doctors were insisting I had menegitis (which it was but because of the LD), and I refused a spinal tap. Luckily for me, the blood work came back positive for Lyme.

I have to go back to my PMD for a referral for a specialist in Lyme Disease. Luckily, there's a practice near me that specializes in infectious diseases and deals with Lyme.

I'm just crossing my fingers and hoping that I'm not going to suffer lingering effects, but I'm not all that optimistic since it's obvious those little spirochetes invaded my central nervous system. I've already used up all my sick time at work.

Thank goodness for websites like this one.

Posted by Lymester (Member # 5848) on :

Your PMD, forget about getting a recommendation and go to Seeking a Dr.

This whole perception of ever getting a rash and determining treatment and diagnose based on what a "typical" rash is, is absolute ignorance.

Get an LLMD e-mailed to you from the Seeking a Dr. Forum.

Lymester

Posted by ICEiam (Member # 7519) on :

Most ID MD's have no clue how to treat Lyme or the co infections. If you want to get to the bottom of your problems and get treated for Lyme, you need to find a LLMD ASAP and not mess around with the ducks out there. They will only drag out your symptoms and I hate to say it you will just get more and more symptoms if you go without the proper treatment. One very important thing you need is to be tested for other Tick borne diseases and your ducks don't usually do this.

Good luck and learn from the posts on this board. The good people of LymeNet will not steer you in the wrong direction.....well most of them won't anyway.

Good luck,

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ICEY

IDAHO LYME SUPPORT GROUP
[email protected]

Posted by LymeinPrincetonNJ (Member # 7696) on :

Thanks for the info about Lyme Docs. I can go out of network, so I'll get myself there as fast as possible. Especially since the headache is now gone but the top of my right foot is going numb...

I can just hear those spirochetes laughing... Ugh!

Posted by janeymae (Member # 7018) on :

Meningitis was what alerted me to the fact that I have late stage lyme. The headaches were very bad last Feb. and after about 10 days they had lessened, but didn't go completely away. I went to a neuroligist who orded a lyme test and fortunately for me it came back positive. (it answered alot of questions on symptoms that have come and gone over many years) It was a relief in some ways to find out that something was really wrong. I am only sorry it took being so sick to find out.

I still have headaches, but not as bad, sometimes it is the whole head, sometimes shooting pains that can be in anyplace.

I am on treatment now and hoping things will never be that bad again.