Recently I have started having symptoms of Lyme as a recurrance after of year of feeling normal. I wanted to take a poll to get some feedback regarding headaches.
Do you get headaches?
Where on the head?
What type of pain?
How often and when?
Does medication help?
How long did you have them?
Me:
1 Yes
2 Back of head - right side mostly but sometimes both sides
3 Pain is more of a dull pain that comes for a few minutes and goes away for a while - also normal head ache that lasts for hours
4 Daily at anytime
5 Yes sometimes
6 A month now but abut 3 months when first diagnosed
Thanks.
Ed
Yes I get them.
Usually left side from neck up.
Pearcing/throbbing pain (sometimes makes left eye a bit blurry.
Random, sometimes daily then none for weeks.
Can only take Tylenol, not much help.
Have had them many years, forgot how many.
DLL
Where on the head? They vary but the worst ones are around my eyes and temples. Also forehead can be part of the bad ones, too.
What type of pain? Again, this varies. Mostly throbbing during worst ones. Aching of some level all the time.
How often and when? Bad ones 3-4 times a week. Less severe ones constantly.
Does medication help? Maxalt (migraine med) works sometimes for the bad ones. Otherwise nothing touches them.
How long did you have them? They were my first symptom six and a half years ago and they've been constant since then.
--Annie
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To get where you need to be
You'll go through anything.
--Shawn Mullins
My doctor recently ordered an MRI and MRA with contrast of the brain. I complained of neurological symptoms from the Lyme. My brain does wierd things, so he wanted the MRI.
Well, the MRI showed a brain aneurysm behind my forehead, the location of my headaches. He referred me to a neurosurgeon and faxed my report to the neurosurgeon. I called to make an appointment on my day off next week, but the doctor said he wants to see me right away. That made me a bit nervous, but I'm not too worried. I've had the headaches for a long time. I see the neurosurgeon tomorrow.
The bottom line is that you should probably have an MRI just in case. I had a CT scan in 1985 that showed nothing. The MRI shows more. Maybe it'll save your life so you can continue fighting Lyme!
Scott
Yep. Was my first presenting symptom and they thought I had an anerusym or hemmorage due to the sudden onset- termed a thunderclap which left me totally bedridden.
Where on the head?
When this crap first started ( which wasnt an anerusym or hemmorage, or anything else) ALL over, but tons in my forehead, eyes, back of head and neck. I couldnt move, period.
What type of pain?
Ever have a spinal tap that needed a blood patch? THAT Kind
How often and when?
I had that severe headache for five months straight and it went away on its own. Still had some annoying and very painful migraines afterwards.
Does medication help?
NOTHING helped. I ate sinus pills like candy to take any bit of the edge off and I slept through most of the first five months. I tried all kinds of headache pills. Honestly- know what finally cut them out for GOOD ( except two slammers in about 6 months?)
Bartonella treatment!
How long did you have them?
5 months straight - never stopped, wasnt a nagging headache, was severe, I couldnt cry without causing more pain. Now, usually around my period and they arent fun either.
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Occaisionally I get migraine types that make me feel sick to my stomach, those mostly start at the back of my head in the occipital area.
But usually, it is my entire head, sometimes feel like piercing in my ears, other times like a diagonal band around my forehead and down near the occipital area (close to back of neck).
Had CAT scan of sinus- to r/o sinus infection (which I did not have) and I do have some allergy problems.
To be honest I can't remember when I haven't had a headache. If it gets too bad I take a naproxen sodium.
[This message has been edited by smiles (edited 13 June 2004).]
I take a medicine perscribed by LLD for reducing swelling--they believe it is slight encephilitis from co-infections
without meds head hurts every day
still get sinus headaches quite frequently for which I take flounaise, claritin and sudafed
I am on long term IV treatment right now and sometimes my abx gives me headaches as well
I have had them for years on and off--not till dxed with lyme 3 months ago did I know it was lyme causing them-been to many ent's and had MRI's of sinuses with negative results and they were writen off to stress
Where on the head?
Some are in the back above the neck. Some are on the top of the head. Some hurt in the face. The worst hurt all over.
What type of pain?
Aching, pounding, throbbing, burning, stabbing. Pain with movement, pain with pressure, pain from light touch. Nausea with the worst ones, and vision troubles, problems focusing.
How often and when?
Some degree, every day. Fairly bad, frequently, though this has been improving. Go in your room, shut the blinds, turn off the lights and hope nothing moves, once or twice a month in hormonal cycle.
Does medication help?
Antibiotics have been reducing the severity and frequency. Progesterone is reducing the hormonal headaches, though lately those have been somewhat worse. When all else fails, vicodin.
How long did you have them?
Years
Where on the head? everywhere! Also get a numb feeling in ears to go with the light and sound sensitivity.
What type of pain? dull ache to a throbbing, stabbing, wish I could die pain!
How often and when? Daily for over a month when first diagnosed. Recuced with abx
Does medication help? Rarely! But what did occasionally was 250mg asprin, 250mg tylenol and caffine.
How long did you have them? off an on for several years. Finally got to the point of going to the ER in despiration. Just started treatment for Lyme and they are already reduced.
There is hope!
Where on the head?
Mostly at the back and on top - a terrible squeezing type of pain.
What type of pain?
Every morning when I wake up it's throbbing at the back - at the base of my skull & my face is very tight & hurts. Once I stand up, the throbbing is replaced with a squeezing pushing/ pulling deep pressure kind of pain at the back & top of my head.
How often and when?
24/7 since March, 2003
Does medication help?
I take Elavil every night to help me sleep - it takes a 'slight' edge off the nerve pain - but the head pain is still full force. I've tried lots of other things - Tylenol, Aspirin, Alleve, Advil, Zomig, Amerge, Valium, Depakote, Ultracet - and these do NOTHING.
How long did you have them?
17 months so far.
I've been on ABx since Feb, 2004 with no improvements whatsoever.
Sure hope I can get some pain relief soon.
SIs
1. Yes
2. Left side around the eye and TMJ is the worst - the one you don't want to live any more. Constant pressure/tension on the whole head. Spasm of the top of the neck/bottom of the skull.
3. Throbing with all migraine properties, pressure, tension, cluster - feeling like beeing zapped by electricity or stabbed by a sharp object.
4. Daily 24/7 since 11/7/1994. Never had even a light headache before than.
5. Sometimes. None oral meds, but some IV like Methadone or Fentanyl. Now I use Duragesic patch 200mcg/hour (normal dose is around 25mcg/hour) and change it every 2 days instead of 3 days.
I spend 3-6 month a year in the hospital, when nothing works, so my doc puts me on life support.
I have tried over 150 meds, which mostly made me miserable.
6. Too long.
I have severe brain tissue damage from chronic encephalitis caused by HHV #6.
I have just started a Neurocranial reconstruction therapy and it seems to be working great.
I had several times complete resolution of pain.
It's painful (inflating little baloons through my sinuses) and expensive.
My doc is planning it for 4 days every 2-3 weeks for a year to get better spinal fluid flow, rehydrate the whole brain and spine. I don't know how long I can afford it.
Also the treatment eradicated all my allergies! Or hepled it - as I also use a lot of the Sango coral calcium and undergoing insulin potentiated abx therapy.
So sometimes I don't know exactly, what improved what.
I don't wish my head pain on anybody.
Take care. Hope you get well soon!
Punkie
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1. Yes
2. Mostly in the back of my head. Also, I get sinus headaches and more diffuse ones.
3. They're quite severe, although the diffuse ones are not. The back-of-head and sinus ones seem to come at the same time, and the pain can get so bad that I beg for death, or mercy in some form.
4. They seem to come frequently, I guess, though I don't notice a correlation with anything in particular. I mostly wake up with them.
5. Ibuprofen usually helps.
6. I've had them for many years.
Steph
[This message has been edited by Starphoenix (edited 13 June 2004).]
Where on the head?
Mostly my whole head, sometimes lately, there is more pain on the left side. Also, pressure at my eyes.
What type of pain?
The "every day" ones - Lots of pressure, like my whole brain is swelled and my skull is too small to contain it.
Then there is my "horrible can't function" ones - Pretty much the same feeling, only a whole lot more pain, like a migraine (only worse)
How often and when?
Headache every day - forgot what it feels like to not have one. The really bad ones - anywhere from a period of 1-2 weeks a month.
Does medication help?
Nothing I take gets rid of the headaches, just lessens them. When I'm desperate, I take vicodin. Even that doesn't get rid of the headache - it just lessens the pain.
How long did you have them?
I've had a headache every day since Jan. 2003 - yes, a year and a half.
My headaches are most always right behind my eyes, more specifically my left eye.
It is a dull aggravating pain.
Sometimes otc pain meds will take it away, sometimes not. Depends on how bad it is.
I've had these headaches for the last couple of years (since lymed), Like I said, before being treated for Babesia they would come on and last anywhere from a few days to a few weeks.
Now I get them occasionally and usually only for a day or two at a time.
Yes. I've always been prone to headaches...have had migraines since the age of 12, however, when I got sick with Lyme (which I didn't know at the time) I had the worst ha's a person can have. I thought I was dying of an aneurysm or tumor. Had an MRA and everything came back normal.
Where on the head?
The pain was behind the eye and in the forehead.
I also have every day headaches...some can be severe, but nothing as severe as the pain I had before I was diagnosed with Lyme.
What type of pain?
Imagine an ice cream headache times a billion. Stabbing ice pick pain in your eye that lasts for 2 hours and NO pain meds, not even morphine take it away. You beat your eye with an ice pack, stick your head in freezing cold water, put tiger balm in your eye.....anything to dull the pain!
How often and when?
In the fall had one cluster cycle of 6 weeks...2 a day, one in the morning upon wakening and one about 1-2 hours after falling asleep. It would wake me from a dead sleep.
Does medication help?
The only meds that were fast acting enough were imitrex injections.....they work for cluster headaches, which is what I was diagnosed with. They gave me something stronger than morphine in the ER and it did nothing. Only 100% oxygen for 15 minutes or Imitrex injections will take the ha away. I eventually was put on steroids and verapamil to end the cycle....little did I know I had Lyme disease....
How long did you have them?
The cluster headaches lasted 6 weeks, twice a day. Worst 6 weeks of my life. I thought I was going to die. Then I was diagnosed with Lyme almost a year later.....the cycle never came back after starting treatment for Lyme.
I still get the migraines I've always had and I pretty much have a headache everyday. I wake up every morning with a headache, but nothing compared to the horrible ice pick pain in the eye!
Michelle
I get them on the top of the head, on one side (usually the right) and at the back of the head
The pain goes from dull ache to head splitting, earth shattering pain.
My headache never completely goes away. I usually have one or two really bad headaches a week and they happen at all times and without warning
I've tried all the migraine meds but they don't work for me. The only thing I take that helps is endocet, ice and sleep
My headaches started in MAy of 2002 and they haven't gone away yet despite neck surgery, occipital nerve blocks and different meds.
I hope yours get better. I haven't had any luck
2.Come from base of skull but also involve temples and eye area.Actually had swelling around the right occipital area when it was really bad.That still comes and goes.
3.It is a dull constant ache ,pressure feeling.
4.I can't remember not having some kind of headache for the last 4 months at least.Even wake up in the middle of the night with one.It was better for a while when I was doing IV rocephin.
5.Iv rocephin seems to settle it as I think it penetrates the brain best and kills them off.I take panadol forte on a constant basis but it doesn't get rid of them altogether.
6.It was one of my first symptoms and they have pretty much been one of my main most constant symptoms since I had lyme.
Sue from Downunder.