Ok..I posted awhile back and now I have dealt with the most severe head pain for 3 months now, this on top of pain EVERYWHERE ELSE in my body. Let me describe this though:
It feels like I have been hit in the back of the head with a sledge hammer, the pain radiates through my ears and jaw and sinuses and I think I am tasting my fillings - something metal. It hurts in my jaw and teeth sometimes.
It hurts so bad, I cannot touch my scalp, it is tender and so sore I can't even lay my head on a pillow...I am going to go crazy...NOTHING is helping it! My pain management MD suggested botox injections into the scalp OR lidocaine. Cortisone destroyed me 2 years ago...I don't trust ANY injection for pain.
Dr. S - said he is sure it is LD related (someone here awhile back brought up the possibility of Chiari Malformation - which actually FITS) I asked about OTHER possibilities including Chiari, he offered an MRI and made it sound useless in the same breath so I turned it down. Plus I don't think I can stand the clanging, banging noise of the MRI machine it is SO LOUD....he said it likely wouldn't show anything anyway.
I seriously need help...I don't know what to do, ice doesn't help, heat doesn't help, narcotic medications don't help NOTHING helps.
I have wondered if this is referred pain from neck or if the head pain is killing my neck too. If it were refered, why would my scalp be so tender?
Can any of you suggest anything?
Posted by seibertneurolyme (Member # 6416) on :
Cranial sacral massage might help. Or I think I would look for a really good Chinese accupuncturist.
Do you take any bloodthinners -- meds or herbal things? Hypercoagulation could be a contributing factor.
Hubby has had headaches in the past -- mostly seemed to be from Babesia for him. Butterbur liquid extract from Gaia herbs (a combination formula) was helpful and also Butterbur capsules (Now brand). Butterbur is generally used for migraines.
If you are on numerous meds and especially painkillers I think this could be at least partly a toxic headache.
For painful skin you could try St John's Wort -- oil applied to the skin or oral tincture or capsules. But check for possible drug interactions first. I use something like Icy hot and then apply the St John's Wort oil when hubby has backaches or stomach aches.
And of course if it is neuromuscular pain then epsom salts baths could help.
This is not medical advice, just my opinions based on hubby's experiences.
Just remembered something else. I have read that often pain is caused by a deficiency in serotonin. Do you take B vitamins -- especially B6? or 5HTP? But may need to take resveratrol with these to prevent conversion to quinolinic acid.
Bea Seibert
Posted by savebabe (Member # 9847) on :
I had severe headaches as well, and my GP thought it might be Chair Malformation also. He had me go for a MRI standing up to make sure they get an accurate depiction of the brain.
Also, if you take to many meds like excedrin migraine, than you may be experiencing rebound headaches.
My initial headaches were from my multitude of tick infections, but after a while they were so constant my llmd thought it was rebound. Well, 6 months of going "cold turkey" from pain meds the headaches are gone.
I hope this helps.
Posted by savebabe (Member # 9847) on :
Also, consider a glutathione push to pull out the toxins.
This always helped me. Posted by sixgoofykids (Member # 11141) on :
Did your pain happen to start when you started a new med? I recently starting having a constant headache, though not as bad as you describe, and it started when I began taking Sonata. Now that I stopped taking the Sonata, the headache went away.
Posted by lymebytes (Member # 11830) on :
Thanks for responses.
Yes, it started after I started again on Bicillin. I had a similar pain when first diagnosed. I was put on Amoxi and it vanished.
Now nearly 2 years later it is back w/a vengence, worse than ever.
I stopped Bicillin for 2 weeks (although I doubt it was completely out of my body) it made no difference. Now, I am stopping Biaxin for awhile (which I have had no problems on) to see if I have developed a problem with it.
Also - MRI was just ordered.
Thanks for all of your input.
Posted by willkilllyme (Member # 16000) on :
ive had severe head pain for 18 months.
its no fun to say the least.
for me its blo or myco related.
it gets worse on tx, better when i stop, and so on.
hope it gets better for you soon. it surely is no fun.
Posted by diana (Member # 7466) on :
I had severe pain in the same area while on ketec/tinidizole. Had to take morphine the whole time I was on it.
Find yourself a good osteopath that does cranial work!
Diana
Posted by AZURE WISH (Member # 804) on :
quote:Originally posted by lymebytes: I don't know what to do, ice doesn't help, heat doesn't help, narcotic medications don't help NOTHING helps.
I have wondered if this is referred pain from neck or if the head pain is killing my neck too. If it were refered, why would my scalp be so tender?
Can any of you suggest anything?
Do you think that it might be nerve related. Once my nerve pain is so bad sitting anything on isnt going to make it better (heat or ice pads have weight add pressure).
Do you think your pain could be nerve pain?
None of the pain meds (including narcotic) ever helped me with the nerve pain.
Do you think you could ask your pain guy if he thinks it could be your nerve pain and if he could try to give you a prescription for something that targets nerve pain?
I have pain in my neck/back of head that I suspect is coming from the babs.
I hope you find something that helps soon Posted by djf2005 (Member # 11449) on :
babs is not the only cause/culprit of severe head pain.
i cant tell you how many llmds have told me that, yet bartonella, blo, and myco are notorious for the symptoms.
ive been dealing with it on and off for 18 months, pretty much all on, and i had the most relief from levaquin, which would lead me to believe myco or bartonella...
hope it gets better for you soon.
like azure said, try neurontin on lyrica, see if its nerve pain. also, try to sleep as much although i know thats so hard to do with those symptoms.
best wishes
derek
Posted by njlymemom (Member # 15088) on :
i can relate here
it could be a herx
what is your treatment right now??
you might have mentioned - having trouble reading it all
my head pain got relief when started treatment
then it returned
then added in biaxin, and i think the bart was being hit
i have had myco, and still might have it
so you could be herxing, or a coinfection needs treatment
i have never found MRIs to help with treatment changes
Spect scan can give you more info when head pain is the issue
wish i could just take all of our pain away....
sometimes i just can't read this site too long
i relate to what all of you are going through
and it is just too much.
best wishes.......
Posted by cottonbrain (Member # 13769) on :
could these be cluster headaches, a severe form of migraine?
migraines are a common sx of Lyme and Co's -- i get them, but not in the back of the head.
cluster h/a's are known for being so violent that people will bang their heads against a wall or even kill themselves to stop the pain.
have you tried imitrex or other acute migraine meds?
Posted by lymeinhell (Member # 4622) on :
I have SOOOOOO been there. It felt like someone had bashed in the top of my skull with a sledge hammer.
What fixed it? Trigger point injections of lidocaine into the muscle spazms that were at the BASE OF MY SKULL, causing referred pain around the top of my head, through my ear, down my jaw, and even down my right upper shoulder and arm.
I couldn't even touch my hair, let alone lift my right arm to brush my teeth.
I honestly thought my brain would explode, as I feared this was coming from inside my brain..
Trigger points injections of lidocaine into the lumps that are no doubt there let me feel like a human being again.
I did weekly series of injections for about 2 mos. At first the relief was temporary (about a week), but eventually I didn't need them any more.
Poke around back of your skull with your knuckle). Find the sore spot and apply as much pressure as possible for as long as possible. That spot may get sore but the skull pain may just recede.
To keep them away I did a few IV's of Mag Sulfate and do weekly IM injections.
Hope this helps!!
Posted by Melanie Reber (Member # 3707) on :
I'll just add one more suggestion for what finally helped my severe head pain.
Methazolamide (Neptazane), it is a glaucoma med that reduces the swelling. It was heaven!
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