headaches

[Guest guest]

Hi Dabs,

I also use pain relievers with headaches. I go to the chiropractor, use pain

meds and put an ice pack on my neck and sit in a chair, the pressure is less

when sitting instead of laying down. Sometimes the air from the fan hurts

the skin , so I cover my forehead with a hanky, then also use my tens unit on

the sides for TMJ, i am quite a site, but I am sick of headaches and try

aything, they used to go away before I left the chiro's office, but now it

takes 6-7 hours. My husband says I look like someone from outer space, Oh I

also put pillows under my arms to keep my shoulders up and not dragged down,

you name I have tried it.

LOL,

Connie, MI

[Guest guest]

Hi,

I started taking sulfasalazine about 7 weeks ago. Every since then I have a

headache at least 5 out of 7 days a week. I don't know if it is related but

it is the only thing that is different since the headaches started. I see the

dr. on Thursday so I will see what he says.

[Guest guest]

I do. I also have swelling in my face and around my eyes. I do

not know what it is from but I did read that PA can have an

effect on eyes. I would assume that the joints in our jaws can

get arthritis too. I am sure that would cause a head ache.

Lee Ann

[Guest guest]

Cooky,

I would love to add the Zithro but haven't found an agreeable gp. I have

never had a headache with a flare and the pain I have in the base of the

skull feels like a crick in the neck, like when you sleep in an awkward

position, but it is there all night long. It goes away during the day. I

hope you can find a way to take the Zithro, especially as it seems to clear

the sinuses. That is my pet peeve. The constant stuffy nose.

Hugs

Bev

rheumatic headaches

> From: Cooky <cooky1@...>

>

> I would like to share an experience with all of you.

>

> Last month my doc and I decided to quit the IV's and try Zithromax (it

> seemed the IV's after one year wern't doing anything anymore). After the

> first dose I had a massive headache located at the base of the left side

> of my skull. It went away and then on thursday It was not as bad. The

> next week I got another severe headache and my B/P shot up to 170/100.

> No more Zithromax. I had accupuncture and it went away after being

> severe for about 5 days.

>

> We decided I should go back on the IV's an cut them down to every other

> week. At the start of the first week without IV's I felt headachy but I

> attributed it to the chiorpractor who was working on my feet. On

> Thursday (4 days before my next IV) I started with the headache which

> got progressively worse (B/P was 130/86) till last night when it even

> made me nauseated. Also having sweats and last night chills. I decided

> to do th IV early (this AM) to see what would happen. Tonight at 6PM the

> headache is completely gone. Was that a flare, herx or dunno? I really

> think it was a flare. Hubby is not convinced. My reasoning is that

> headaches only at the base of the left skull were symptoms of my RA and

> since going on AP they have only been infrequent or not at all (the

> headaches).

>

> One other thing ...since going on Zithromax (only 3 doses) my sinuses

> were great (first time in years). Then staring last week they started

> again (green discharge and burning, runny eyes). I would love to try the

> Zithromax again...should I dare???

>

> Comments are very welcome.

> cooky

>

>

>

> My general condition is teriffic: no pain ..no NSAIDS..no

> prednisone..doing everything I ever did..Sed rate 3 ...RF 32

> Minocin 200mgms MWF sometimes MTWF and Iv's of Clindy weekly (till Oct)

> I also have fibro and that was even getting better (finally).

>

> >

[Guest guest]

I don't know if you should try Zithromax again, but here are two tidbits.

One is that Zithromax is often used to treat sinus infection, but may be

needed longer than a Z pack which lasts one week. What else is new!!!! The

other is that my doctor says that mycoplasmas are notorious for hiding out

in the sinuses, so......looks like there could be a common cause between

your RA and sinus infections???

a Carnes

> From: Cooky <cooky1@...>

>

> I would like to share an experience with all of you.

>

> Last month my doc and I decided to quit the IV's and try Zithromax (it

> seemed the IV's after one year wern't doing anything anymore). After the

> first dose I had a massive headache located at the base of the left side

> of my skull. It went away and then on thursday It was not as bad. The

> next week I got another severe headache and my B/P shot up to 170/100.

> No more Zithromax. I had accupuncture and it went away after being

> severe for about 5 days.

>

> We decided I should go back on the IV's an cut them down to every other

> week. At the start of the first week without IV's I felt headachy but I

> attributed it to the chiorpractor who was working on my feet. On

> Thursday (4 days before my next IV) I started with the headache which

> got progressively worse (B/P was 130/86) till last night when it even

> made me nauseated. Also having sweats and last night chills. I decided

> to do th IV early (this AM) to see what would happen. Tonight at 6PM the

> headache is completely gone. Was that a flare, herx or dunno? I really

> think it was a flare. Hubby is not convinced. My reasoning is that

> headaches only at the base of the left skull were symptoms of my RA and

> since going on AP they have only been infrequent or not at all (the

> headaches).

>

> One other thing ...since going on Zithromax (only 3 doses) my sinuses

> were great (first time in years). Then staring last week they started

> again (green discharge and burning, runny eyes). I would love to try the

> Zithromax again...should I dare???

>

> Comments are very welcome.

> cooky

>

>

>

> My general condition is teriffic: no pain ..no NSAIDS..no

> prednisone..doing everything I ever did..Sed rate 3 ...RF 32

> Minocin 200mgms MWF sometimes MTWF and Iv's of Clindy weekly (till Oct)

> I also have fibro and that was even getting better (finally).

>

>

[Guest guest]

Cooky, I would tend to agree with you that it is a herx. Every time I've

started a new antibiotic, I flare up in a different part of my body. Right

now, I'm flaring in the sinuses after taking one day of Biaxin. I won't bore

you with the whole list, but this is a new area for me to respond. I sure

know I've had a lot of sinus problems with lingering low-level infections

there, so I consider this a good thing, though no fun, LOL.

As to whether you should try the Zithro again, you'll have to weigh

carefully the problem with your blood pressure shooting up so high. Would

the doctor consider another trial at a lower & more widely spaced dose, do

you think? If it returned in the same area, then you would know it was

related for sure.

I sure don't envy you this decision. I went through something similar

when I tried minocycline, and it affected my ears. It was so scary to me,

in that it did not resemble the labeled ear side-effects, that I opted to go

back to tetracycline, and then doxy, rather than risk permanent hearing

damage there. I want to get over this, but I want to come out in one piece,

LOL. If the other antibiotics don't seem to touch it eventually, then I'll

probably try it again, hoping they've knocked it down enough that the

reaction won't be so severe next time. Best wishes with whatever you

choose. Regards, Liz G

[Guest guest]

wierd headaches:

my head ,neck , thorasic spine hurts like a mother.spine 'feels' broken

...got an MRI of brain and head last week...learned i have 'mastoiditis'.don't

know what that menas yet .and the MRI showed inflamation in my face and

ears..the report said brain 'looked' normal i.e. no tumors...and no

comparative MRI ...i do have a comparative ..from '98 rTMS study....but the

resercehers won't let me have the films or reports...uuurrgghhh.......

2 cedar's ENT doc's referred me to UCLA...to yet another ENT ...they think

might help me...have appt on mon...i will let you know if theres more to this

then we know...

though we all have inflamation and brain problems...

Cherlyme

[Guest guest]

at least you are on antibiotics for mastoiditis. My grandmother died of this

at age 35 in the early 1900's. Take care of it.

In a message dated 8/4/00 12:34:11 AM Eastern Daylight Time,

InfoNymfo@... writes:

> wierd headaches:

> my head ,neck , thorasic spine hurts like a mother.spine 'feels' broken

> ..got an MRI of brain and head last week...learned i have

'mastoiditis'.don'

> t

> know what that menas yet .and the MRI showed inflamation in my face and

> ears..the report said brain 'looked' normal i.e. no tumors...and no

> comparative MRI ...i do have a comparative ..from '98 rTMS study....but

the

> resercehers won't let me have the films or reports...uuurrgghhh.......

> 2 cedar's ENT doc's referred me to UCLA...to yet another ENT ...they think

> might help me...have appt on mon...i will let you know if theres more to

> this

> then we know...

> though we all have inflamation and brain problems...

> Cherlyme

>

[Guest guest]

In a message dated 08/04/2000 3:51:50 AM Eastern Daylight Time,

egroups writes:

<< Date: Thu, 3 Aug 2000 15:24:21 -0500

From: " " <jeand@...>

Subject: Headaches

>>

Hi

I am sorry that you are having these awful headaches, about the only

thing you want to do when these come on is cry and beat your head against a

wall. Mine have not come back full force yet, thank God. My daughter has

migrains ( not a lymie) and she had a spell where hers had lasted a week. The

DR put her on Midrin and another migrain med. (it is advertised on TV) and a

pain med. she was to take for 24 to 48 hrs. This was on a Friday and she was

to return on Monday if not completely better. At that time they would be

giving her meds by IV. Luckily she responded to the heavy meds and we didn't

have to go back, so I never found out what the IV med would be, but maybe

this is an option for you if the oral stuff isn't working. We have to keep

midrin on hand at all times and she has to take it at the first sign of a

headach or it won't do the job alone. I hope this helps some and I hope that

the Dr can help you soon.

Your Lyme Friend,

....5 days and counting

[Guest guest]

Hi ,

Thanks for the info on Midrin and headaches. I think it has worked for me

because I have been two whole days with no headache or neckache, after

having constant pain for about a month. :-) The doc told me the same thing

.... take two at the very first sign of a headache and then 1 every 4 hours

after that.

Have a safe trip to Germany and we'll look forward to your posts again after

you get settled.

Jean

TX

[Guest guest]

Hi Joan & Jayne,

Thanks for the reminder about headaches being a side effect of Indocin.

My dr asked me about it, too, but I could always feel my shoulders and

neck tightening up just before the headache begins. This morning I got up

without a headache!

I noticed that singing during worship and eating seems to have a

connection to the headaches, so I did some research on TMJ by

doing a search in the PA archives and learned the many things that can

cause headaches. I've been up just 30 minutes and can already feel my

upper back tightening up, sooo .... It helps to be able to sit in the

recliner and rest my neck. Perhaps I'll learn more about what the x-rays

show this week and understand the problem better.

I'll say again, I've learned more from you people on this list than any

dr, clinic or book. Thanks for being so willing to share your experiences

and knowledge.

Patty B in the Pineywoods of East Texas

[Guest guest]

I have damage in the disks of my neck as well as extremely tight muscles on

either side of the neck. My MD prescribes a new medication called Zanaflex

that works like no other. It can relieve just about any muscle spasm ever

created! See if your doctor is willing to give it a try, it helps me a

bunch! When you take it makes your whole body relax and feel like it is

floating on a cloud!

Ilene

[Guest guest]

Hi Janie,

Thanks for your concern and telling your tale of woe with Indomethicin.

Please note: I was having these headaches BEFORE starting the Indocin.

They were the same KIND of headache, beginning with spasms in my neck.

The increased dose of Indocin seems to have relieved the inflammation

enough that it was late this afternoon before I had one to a much

smaller degree.

However, I do appreciate everyone's caution and will watch for any

changes.

Patty B in the Pineywoods of East Texas

[Guest guest]

Patty,

Are you taking Prednisone? It gave me EXACTLY that same kind of

headache. Horrible. I also felt like my blood pressure was sky high,

felt like I was going to have a stroke. My Dr lowered the dosage

enough that now I just have a tightness in my upper back and neck.

I'm hoping he'll take me off it altogether when I see him Friday.

in Illinois

[Guest guest]

Hi ,

> Are you taking Prednisone?

No, I'm not taking Prednisone because my family practice dr.

is concerned about it causing further bone thinning and I appreciate

his concern. He prescribed Evista ( Raloxifene) instead of the

usual combination of estrogen & progesterone and calcium

supplements for osteopenia and a referral to a rheumy.

Hope you can have your wish granted.

Patty B in the Pineywoods of East Texas

[Guest guest]

Lyra,

If you get an MRI or SPECT scan for your headaches ... the sharp pain in

specific area and the shifting inside ... let me know the results. I've been

dealing with that stuff for 11 years.

Jean

[ ] Headaches

I sometime feel like I have a brain tumor or something. My head

hurts a lot sometimes with sharp pain in specific areas. And then

when I shake my head I feel like there is something shifting inside.

Should I get an MRI or something?

Lyra

[Guest guest]

So it is normal? (well at least for Lymies). If others have felt

this I feel better about it. I was worried that it didn't have

anything to do with Lyme disease.

Lyra

> Lyra,

>

> If you get an MRI or SPECT scan for your headaches ... the sharp

pain in specific area and the shifting inside ... let me know the

results. I've been dealing with that stuff for 11 years.

>

> Jean

[Guest guest]

In a message dated 01/31/2002 2:42:32 PM Eastern Standard Time, rod@...

writes:

>

> Long story short, our headaches may be this clotting problem. I know it

> has been talked about before but I glossed over it since it didn't apply to

> me. I will get out my notes and find the websites that talk about it and

> repost them. Take care,

>

Sorry your trip got cancelled cuz of your headache heather So ou take

oxycontin for your headaches, do they work? I'm looking for other things

other than percosets, that would actually help. What exactly are oxy? I also

take the neurontin, they just told me at the last dr's apt I could take 3000

mgs ALL at once at night and don't break them up throughout the day, tha twas

a lot of that I thought, I don't even understand what the neurontin does or

what it's for, UGH so much to learn!!

YYYY Jody YYYY

To handle yourself, use your head;

to handle others, use your heart.

o <A HREF= " http://hometown.aol.com/tarabencaitysmom/index.html " >Jeff & Jody's

Family</A> <A

HREF= " http://www.picturetrail.com/gallery/view?username=tarabencaitysmom " >Jody's

Photo Albums</A>o

H

[Guest guest]

that brain numbness i explain to people feels like

your hand or foot when they go to sleep and you want

to stomp and shake to " wake them up " , only what can

you do with your brain? one time it lasted for 4 days

and i was ready to put my head under a semi-truck or

hit myself with a hammer. it gives a whole new

meaning to the term " numbskull " , huh?

--- Debbie <pixx6@...> wrote:

>

> Hi guys,

>

> I was wondering if anyone experiences wierd

> headaches from Lyme? I have been having a numb area

> on the right top of my head. It started a year ago

> when I first got sick and increases as a warning

> when things are going to get rough. It used to be

> accompanied by changes in mood, but then more

> fogginess weakness and fatigue. It seems worse

> since the antibiotics, although I feel more well if

> that makes any sense. Sometimes it realy hurts but

> most of the time it feels swollen numb.

>

> thanks again,

>

> Debbie

>

>

>

> ---------------------------------

>

[Guest guest]

You may want to consider methylcobalamin. It is the form of b12 that Dr. B

recommends.

best,

lea

Sue Helms wrote:that brain numbness i explain to people feels like

your hand or foot when they go to sleep and you want

to stomp and shake to " wake them up " , only what can

you do with your brain? one time it lasted for 4 days

and i was ready to put my head under a semi-truck or

hit myself with a hammer. it gives a whole new

meaning to the term " numbskull " , huh?

--- Debbie <pixx6@...> wrote:

>

> Hi guys,

>

> I was wondering if anyone experiences wierd

> headaches from Lyme? I have been having a numb area

> on the right top of my head. It started a year ago

> when I first got sick and increases as a warning

> when things are going to get rough. It used to be

> accompanied by changes in mood, but then more

> fogginess weakness and fatigue. It seems worse

> since the antibiotics, although I feel more well if

> that makes any sense. Sometimes it realy hurts but

> most of the time it feels swollen numb.

>

> thanks again,

>

> Debbie

>

>

>

> ---------------------------------

>

[Guest guest]

Another possible cause of these massive headaches is an excessive clotting

problem called " VonLeidens, or Factor V' This is easily tested and treated

with thinners. They say that about 25% of the population have this. We have

a tendency to stroke out , embolize and have these headaches which are

caused by microclots in the brain, this is also why most pain meds don't

help. just another idea, take care, heather

[Guest guest]

Sue,

So glad I'm not the only numbskull : )

The brain numbness started right along with numbness in my forarm, then my lower

leg, spread to the right side. The arm and leg numbness went away but the numb

brain thing I have almost all the time. I was hoping the antibiotics would take

care of that, but maybe it's too soon to tell.

Lea,

I like your B12 idea, I will give it a whirl and mention it to the llmd you were

so kind to give me. I see her October 11th. Unfortunately my prescription for

doxy is only for 30 days so I will run out, but hopefully my PC will prescribe

additional if I'm not symptom free by then.

thanks,

Deb

Sue Helms wrote:that brain numbness i explain to people feels like

your hand or foot when they go to sleep and you want

to stomp and shake to " wake them up " , only what can

you do with your brain? one time it lasted for 4 days

and i was ready to put my head under a semi-truck or

hit myself with a hammer. it gives a whole new

meaning to the term " numbskull " , huh?

--- Debbie <pixx6@...> wrote:

>

> Hi guys,

>

> I was wondering if anyone experiences wierd

> headaches from Lyme? I have been having a numb area

> on the right top of my head. It started a year ago

> when I first got sick and increases as a warning

> when things are going to get rough. It used to be

> accompanied by changes in mood, but then more

> fogginess weakness and fatigue. It seems worse

> since the antibiotics, although I feel more well if

> that makes any sense. Sometimes it realy hurts but

> most of the time it feels swollen numb.

>

> thanks again,

>

> Debbie

>

>

>

> ---------------------------------

>

[Guest guest]

I experienced AWFUL headaches when I began Methotrexate... I was taking A LOT of

Tylenol for nearly 1 month.

Perhaps he is experiencing similar effects now- hopefully the headaches will

resolve soon.

He's so lucky to have a supportive, proactive partner- I'm sure it means a great

deal to him!

Kirsten

[ ] Headaches

I am a new member, and joined because my husband has been diagnosed

with PA for the last 3 years, he is 28. He has been on MTX,

prednisone, diclofenac, and folic acid. His liver enzymes became

elevated to the point that his rheumatologist took him first off of

the MTX, and then a month later off the diclofenac. Since this he has

been experiencing headaches daily, sometimes they are quite

excruciating. The doc has done nothing for this. He is taking a lot

of tylenol, but even that does not seem to work all the time.

Anyone else ever experienced these headaches, and if so, what did you

do about them?

Thank you

[Guest guest]

TY I will try anything! LOLOL and I have that from making

Christmas baskets LOL The H/A's make my eyes water anyhow, so whats a

little more water, maybe I'll stand over the house plants *-)

> ,

> Have you tried peppermint essential oil? It works wonders for me....it

might

> help if you don't mind being minty and having your eyes water a bit at

first.

> It sounds like you're having neurological issues, and the mint will help

> with that as well as the pain. Hope this helps, C

>

> > Message: 15

> > Date: Fri, 20 Dec 2002 01:10:32 -0600

> > From: " Rodney Metzler " <rod@...>

> > Subject: Headaches

> >

> > I have had horrible intractable headaches for 2 months straight. I have

> > tried Imitrex, Verapamil and Frova and another one that didn't work but

I

> > cannot recall the name. Nothing is helping. This headache is like a band

> > across the top of my head and feels 'electrical' . if that makes any

sense.

> > Drs are at a loss. however, I think my LLMD will be ordering a SPECT

next

> > visit. This is a new headache feeling, usually it was pretty much like a

> > migraine, only not.

> > Anyone have these? if so what is the dx? Have any suggestions as to

what

> > to do? I can hardly handle the day to day, I cant get much done and my

> > house is a disaster LOL ( I am a Virgo so I am anal about cleaning LOL)

> > Thanks SO much in advance,

> >

>

>

>

>

[Guest guest]

For me, Flagyl was a godsend for my Lyme Meningitis and Encephalopathy.You

know, those real bad headaches where you sit and cry in the dark and quiet

and feel like your head is in a vise and about to explode! Where you can

take 2 vicodin and a toradol and still be in pain, where nothing seems to

work. Yeah, those ones. It's been awhile since I had headaches that bad, now

just mild headaches, but I will never forget them.

It wasn't until I added Flagyl that my headaches got better. Flagyl is

reported to break blood/brain barrier and I know it did with me! I was worse

at first, pretty unbearable, herxing and getting worse, as we know, a sign

that the meds are working. So I hung in there and glad I did.

I have been on Flagyl 2 times in my 3 1/2 year stint on ab for 6 months each

time. It did create horrible yeast problems but otherwise no problems. I

guess I am lucky in that I seem to have a good liver. My choice for head

Lyme is flagyl. Though I had to ask my lyme Docs for it both times they

supported it and gave me Rx. Good Luck. I hope to never go back to that

particular hell of Lyme.

Robin W. in California

>From: " Rodney Metzler " <rod@...>

>Reply-

>< >,<LoveyOnLyme >

>Subject: [ ] headaches

>Date: Tue, 31 Dec 2002 01:37:52 -0600

>

>It has been a week since I started taking Advil Migraine. To recap, I have

>taken just about everything for these durn headaches and nothing worked,

>tried the Advil because Tylenol-Migraine was out. I cannot believe how

>much the Advil has helped! Its amazing and knock on wood, it will keep

>helping. I do however, have to take it everyday, I had skipped 2 days, only

>to have h/a come back with a vengeance. I do think that this is Lyme

>Meningitis (LM) , had it a year or so ago, but not this bad. Also think

>that its LM because the Advil is helping, which is more of an

>anti-inflammatory than any of the other meds.

> Anyhow, just wanted to pass on this news and I HOPE , that it helps

>someone else.

>

>