posted
Can anyone tell me who suffers from Lyme related headaches what your headaches are like? Are they frequent? Few times a month? I've had a lot of headaches this past year after being diagnosed with Lyme last summer, but no other symptoms really to make me think I was still infected. EXCEPT I still have stiff shoulder/neck muscles.
Posts: 144 | From Connecticut | Registered: Sep 2006
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I have the worst headaches known to man, so I know your pain. I have had the same one now for 3 weeks 24/7 and it is terrible. Before that they were tolerable but every couple of days or so.
My headache feels like my brain is on fire, someone is poking me with hot pins and alot of pressure. I feel foggy, spacey, like I am going to pass out..my head is very heavy.
I have an unbelievably stiff neck which makes matters worse. I have tried every pain reliever prescription, etc... none work.
Saw a neurologist today actually and he is going to put me on gabapentin/neurontin & methylprednisolone in addition to all my million other drugs for lyme. This should help the weird nerve pain.
Good thing is he wants me to check with LLMD before I start the new meds.
As for the headache and stiff neck as your only real symtpoms. When I was first diagnosed with Lyme 4 years ago(with positive results) my only symptoms were headache and stiff neck.
I went through all the migraine meds, mri, etc.. before being tested for lyme. After antibiotic treatment they went away, but four years later they are back with a whole host of new and painful symptoms.
Sorry for the rambling...hope this helped.
Posts: 34 | From New Milford, Connecticut | Registered: Sep 2006
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posted
My headaches when I first got sick were extreme pressure headaches, like somebody was pushing my brain through my skull. i also get lots of sinus headaches now, but not the same pressure ones as in the past. I have a recurrence of HAs now that I am on rocephin. But not as badly as in the past.
Posts: 589 | From Rhode Island | Registered: Jun 2006
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posted
The headaches/horrendous neck pain has been the worst of my symptoms for many, many years. Sometimes the head pain is enough to lay me completely out -- totally non-functional. Migraine meds do help a lot of the time.
Mine have gotten a lot less severe (though still very much a concern, esp the neck pain) after treating for babs.... just a thought.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
I get headaches of all types. I only seem to notice the severe ones anymore.
Those "back of head/neck" types I think are related to Babesia in my case as my treatment for Babs has been flaring those up big time.
The migraine/cluster type I can get every week or so practically went away completely when I was on Bicillin injections. But they returned once off the injections.
I have an excellent pain management doctor that always seems to know how to help with each particular type of headache.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Pauline, I am so sorry you are suffering from headaches. They always have been my chief complaint. Nothing over the counter helps remotely, and it's a marvel I have a liver after a couple years of supporting the Advil industry.
After a misdiagnosis of MS, I finally tested positive for lyme and began treatment, which seemed to help, but didn't last.
The reason it didn't last was that I had neglected to test for babesia, and was positive for WA-1, the friendly West Coast strain.
I treated for two months for that and my head felt lighter than air. However, a month after stopping treatment, I'm back to square one.
I just came off a four-day headache roll. Talking hurt. Front of head, behind eyes, a constant "6" with spikes to an "8." (Believe me it can really get much worse.) When like this, a Relpax can help, but I was out. Driving is dicey. You get lost.
Frequency is almost all the time. At my neuro's request I "charted" my head pain once; I think there were 8 days out of a month when head pain was negligible.
[Side note: This is when neurologist remarked, in spite of tick bite/rash/symptoms + MRI with multiple brain lesions, "I szink you just have migraines. Ve just need to find out vot your triggers are."]
I got your trigger, baby.
Coinfections are frequently at the root of continuing headache pain. Hunt em down and kill em! There is hope!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
I have chronic daily headaches and have had for years. My whole head hurts; the back, the front, behind the eyes, just plain everywhere.
I have found relief for the back of the head and neck area pain with myfascial release, or cranial sacral therapy.
Unfortunately, my LLMD says if the headaches haven't left yet - I've been in treatment for over a year - they probably never will.
I have tried every prescription and OTC there is, but nothing seems to help. When I first started seeing the LLMD, after seeing a neurolgist for quite a while - I brought him a list of the meds I had tried and he was amazed at how extemsive the list was. I didn't want him to try the same ones again, as one of the neurologists I saw did - even though I told him I had been on it before. I also kept track of any side-effects so we'd know what class of drugs to avoid. Beta blockers are a big no-no for me!
Good luck with finding some relief.
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
posted
My son has had a headache non stop for a year. His first lyme sympton was the headache and neck pain. If anyone out there has some miracle cure he would sure like to try. The only time the headache left was before we knew it was lyme he was given prednisone (which we now know is bad for lyme) and it did help with the lyme.
Amy
-------------------- Amy Holloway Posts: 255 | From Michigan | Registered: Oct 2005
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posted
On the Canadian Lyme Disease Foundation website (www.canlyme.com) people have posted about their success with aloe vera juice and how it has helped their headaches.
If you go to that site and search 'aloe vera juice' the postings will come up for you.
My daughter does not suffer from headaches so I can not comment on its effectiveness, but the reports from other members have been positive.
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