Headache question

[Guest guest]

My headaches returned a few weeks ago, along with the joint pain &

skin sarc...at least I had a few months 'off'. Still on 2G of

cellcept / day. Doesn't seem to be helping much...then again, maybe

the flare would be much worse without it. I'm not sure what the

trigger was this time around but can't help but think that the heat

isn't helping.

I can deal with most of the symptoms but it is really tough to stay

positive with the intense pressure, the feeling of hot liquid being

poured over my head & what I refer to as lightening bolts (short,

sharp pains...now I know how Harry Potter must have felt) from the

headaches. I know there are no miracle cures out there...just

wondering if anyone has some tips that might take the edge off.

Peace to all, Tony

[Guest guest]

Tony,

I was just thinking I hadn't seen anything from you in awhile; glad to

see your note even though you are not feeling well. I will keep you in

my prayers.

Terri G.

>

> My headaches returned a few weeks ago, along with the joint pain &

> skin sarc...at least I had a few months 'off'. Still on 2G of

> cellcept / day. Doesn't seem to be helping much...then again, maybe

> the flare would be much worse without it. I'm not sure what the

> trigger was this time around but can't help but think that the heat

> isn't helping.

>

> I can deal with most of the symptoms but it is really tough to stay

> positive with the intense pressure, the feeling of hot liquid being

> poured over my head & what I refer to as lightening bolts (short,

> sharp pains...now I know how Harry Potter must have felt) from the

> headaches. I know there are no miracle cures out there...just

> wondering if anyone has some tips that might take the edge off.

>

> Peace to all, Tony

>

[Guest guest]

maybe the flare would be much worse without it.

Tony, this is such a common dilemma. When it seems like various meds aren't helping, there is always the issue of "What would have happened if I weren't taking them?" And of course, there is no answer to that.

I can relate to the lightning bolt sensation. Although I rarely have it anymore, I used to get it a lot in my legs; sometimes my leg or foot would just pop up. Other people would look at me like was doing it on purpose. I don't know if it's because the neuropathy is worsening & spreading, but that particular symptom has apparently left the building.

I can't help you with the headaches; I've been blessed in that regard. But I'm sure someone else will respond for you.

Hugs those little girls for us, will you?

Ramblin' Rose

Moderator Messenger Café — open for fun 24/7. Hot games, cool activities served daily. Visit now.

[Guest guest]

Hi Tony, I get similar headaches but with most of the pain concentrating behind my eyes. When I get them pain killers don't even help (Oxycodone does nothing). Sometimes I get double vision. The only thing that has helped was running my head under the cold shower (or sink) then keeping my eyes shut and resting. Get plenty of sleep and avoid stress. regards, RickTony wrote: My headaches returned a few weeks ago,

along with the joint pain & skin sarc...at least I had a few months 'off'. Still on 2G of cellcept / day. Doesn't seem to be helping much...then again, maybe the flare would be much worse without it. I'm not sure what the trigger was this time around but can't help but think that the heat isn't helping. I can deal with most of the symptoms but it is really tough to stay positive with the intense pressure, the feeling of hot liquid being poured over my head & what I refer to as lightening bolts (short, sharp pains...now I know how Harry Potter must have felt) from the headaches. I know there are no miracle cures out there...just wondering if anyone has some tips that might take the edge off.Peace to all, Tony

Choose the right car based on your needs. Check out Yahoo! Autos new Car Finder tool.

[Guest guest]

Hey Tony

Ive been fighting these damn headaches the last couple of monhs too,

theyve put me on Topamax, 100mg day, and increased my Imiprimine to

50mg day, plus added a bunch of pain meds, and finially i think they

are geting under control. The down side is im so rummy I cant think

straight, you just cant win with this thing!!

> My headaches returned a few weeks ago, along with the

joint pain &

> skin sarc...at least I had a few months 'off'. Still on 2G of

> cellcept / day. Doesn't seem to be helping much...then again, maybe

> the flare would be much worse without it. I'm not sure what the

> trigger was this time around but can't help but think that the heat

> isn't helping.

>

> I can deal with most of the symptoms but it is really tough to stay

> positive with the intense pressure, the feeling of hot liquid being

> poured over my head & what I refer to as lightening bolts (short,

> sharp pains...now I know how Harry Potter must have felt) from the

> headaches. I know there are no miracle cures out there...just

> wondering if anyone has some tips that might take the edge off.

>

> Peace to all, Tony

>

>

>

>

>

>

>

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

> Choose the right car based on your needs. Check out Yahoo! Autos

new Car Finder tool.

>

[Guest guest]

Hi Terri,

I was in remission for a few months. Best 'vacation' I can remember

in a long time. It's hard to say much when I'm feeling better.

Guess I feel guilty for getting better when so many are still in the

throws of the beast. I still get the daily digest and just to keep

up with how everyone is doing. Hope all is well.

Peace to all, Tony

> >

> > My headaches returned a few weeks ago, along with the joint pain &

> > skin sarc...at least I had a few months 'off'. Still on 2G of

> > cellcept / day. Doesn't seem to be helping much...then again,

maybe

> > the flare would be much worse without it. I'm not sure what the

> > trigger was this time around but can't help but think that the

heat

> > isn't helping.

> >

> > I can deal with most of the symptoms but it is really tough to

stay

> > positive with the intense pressure, the feeling of hot liquid

being

> > poured over my head & what I refer to as lightening bolts (short,

> > sharp pains...now I know how Harry Potter must have felt) from the

> > headaches. I know there are no miracle cures out there...just

> > wondering if anyone has some tips that might take the edge off.

> >

> > Peace to all, Tony

> >

>

[Guest guest]

Thanks for the suggestions Rick. I get the double vision too. I've

used ice packs on my head on occasion. It does seem to help.

Stress is always a deal breaker. I'm pretty sure this flare was

triggered by stress...my daughters were in a serious car accident a

few months ago. Thankfully they survived, battered & worse for wear,

but alive nonetheless. My symptoms kicked up shortly there after but

I tried to convince myself that it was all in my head...well, it is

just not the way I was thinking.

Thanks again for the suggestions.

Peace, Tony

> My headaches returned a few weeks ago, along with the

joint pain &

> skin sarc...at least I had a few months 'off'. Still on 2G of

> cellcept / day. Doesn't seem to be helping much...then again, maybe

> the flare would be much worse without it. I'm not sure what the

> trigger was this time around but can't help but think that the heat

> isn't helping.

>

> I can deal with most of the symptoms but it is really tough to stay

> positive with the intense pressure, the feeling of hot liquid being

> poured over my head & what I refer to as lightening bolts (short,

> sharp pains...now I know how Harry Potter must have felt) from the

> headaches. I know there are no miracle cures out there...just

> wondering if anyone has some tips that might take the edge off.

>

> Peace to all, Tony

>

>

>

>

>

>

>

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

> Choose the right car based on your needs. Check out Yahoo! Autos

new Car Finder tool.

>

[Guest guest]

From what I'm hearing from others, most meds barely touch the

headaches. The doc put me on migraine meds at one point but they

weren't effective. I haven't tried any of the stronger stuff.

Figure I'm punchy enough most of the time...put me on meds & I'll be

way out where the buses don't run.

Thanks for the suggestions.

Peace, Tony

> > My headaches returned a few weeks ago, along with the

> joint pain &

> > skin sarc...at least I had a few months 'off'. Still on 2G of

> > cellcept / day. Doesn't seem to be helping much...then again,

maybe

> > the flare would be much worse without it. I'm not sure what the

> > trigger was this time around but can't help but think that the

heat

> > isn't helping.

> >

> > I can deal with most of the symptoms but it is really tough to

stay

> > positive with the intense pressure, the feeling of hot liquid

being

> > poured over my head & what I refer to as lightening bolts (short,

> > sharp pains...now I know how Harry Potter must have felt) from

the

> > headaches. I know there are no miracle cures out there...just

> > wondering if anyone has some tips that might take the edge off.

> >

> > Peace to all, Tony

> >

> >

> >

> >

> >

> >

> >

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

> > Choose the right car based on your needs. Check out Yahoo! Autos

> new Car Finder tool.

> >

>

[Guest guest]

Tony,

I don't blame you one bit. Remission calls for a vacation from all

things sarcoid related. I know we all do the same thing too. Sorry

that you are feeling bad again.

Terri G.

> > >

> > > My headaches returned a few weeks ago, along with the joint pain &

> > > skin sarc...at least I had a few months 'off'. Still on 2G of

> > > cellcept / day. Doesn't seem to be helping much...then again,

> maybe

> > > the flare would be much worse without it. I'm not sure what the

> > > trigger was this time around but can't help but think that the

> heat

> > > isn't helping.

> > >

> > > I can deal with most of the symptoms but it is really tough to

> stay

> > > positive with the intense pressure, the feeling of hot liquid

> being

> > > poured over my head & what I refer to as lightening bolts (short,

> > > sharp pains...now I know how Harry Potter must have felt) from the

> > > headaches. I know there are no miracle cures out there...just

> > > wondering if anyone has some tips that might take the edge off.

> > >

> > > Peace to all, Tony

> > >

> >

>

[Guest guest]

Hey, Tony, you know better than to feel guilty for a remission. That's what we're all trying for. Most of us wouldn't wish this disease on our worst enemy. I'm glad you are feeling better & hopefully can enjoy some great times with your girls.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Headache questionDate: Tue, 07 Aug 2007 10:15:45 -0000

Hi Terri,I was in remission for a few months. Best 'vacation' I can remember in a long time. It's hard to say much when I'm feeling better. Guess I feel guilty for getting better when so many are still in the throws of the beast. I still get the daily digest and just to keep up with how everyone is doing. Hope all is well.Peace to all, Tony> >> > My headaches returned a few weeks ago, along with the joint pain & > > skin sarc...at least I had a few months 'off'. Still on 2G of> > cellcept / day. Doesn't seem to be helping much...then again, maybe> > the flare would be much worse without it. I'm not sure what the> > trigger was this time around but can't help but think that the heat> > isn't helping.> >> > I can deal with most of the symptoms but it is really tough to stay> > positive with the intense pressure, the feeling of hot liquid being> > poured over my head & what I refer to as lightening bolts (short,> > sharp pains...now I know how Harry Potter must have felt) from the> > headaches. I know there are no miracle cures out there...just> > wondering if anyone has some tips that might take the edge off.> >> > Peace to all, Tony> >>

More photos, more messages, more storage—get 2GB with Windows Live Hotmail.

[Guest guest]

You know, I said I didn't have the headache problem. Well, I do, but not like what most of you describe. But maybe someone can benefit from my experience. My headaches are mostly "eye aches." Back in 2001 after my second Bell's palsy, I had an episode of trigeminal neuralgia. Thankfully, that resolved within a few weeks & did respond pretty well to Neurontin for the pain. But I was left with a constant mild ache in my left eye & cheek. Periodically, sometimes 2-3x/week & other times only 2 or 3 times a month, the pain will begin to increase. My eye will ache more & more, until it feels like something stabbing the back of my eye. If I haven't taken anything for it, the pain will spread over my left temple & eventually to my entire head. When it first started, I saw my eye doctor (an MD, Tracie!) a couple of times, neurologist, had CT scans of my sinuses, and they all concluded it was a residual effect from the trigeminal neuralgia. I was tried on all kinds of meds--migraine meds, various narcotics, etc. Nothing helped. Finally, the Family Nurse Practitioner I was seeing for primary care suggested Norgesic Forte, and it works great, if I take it when the ache first starts to increase. I usually need to take a second one 6-8 hrs. later to get rid of the headache completely. I carry a couple of them in my purse, because I've been away from home when the pain started, and by the time I got home, the medication wasn't nearly as effective.

The nice thing about Norgesic Forte is that it doesn't contain any opioids, so no drowsiness, constipation or worry about abuse. It does contain caffeine, aspirin & orphenadrine, which is a muscle relaxant. The nephrologist I see for my kidney disease spent a fair amount of time calculating how much aspirin I was getting in an average week, because I had also been taking a baby aspirin daily for cardiovascular protection. She had me stop the baby aspirin because I was getting enough aspirin in the Norgesic. The amount of caffeine is small. My doctors really don't know why the Norgesic Forte works for my headaches, since they believe the pain is basically neuropathic in nature. These "eye aches" occur despite being on Neurontin, Lyrica & other meds for neuropathic pain. But, you know what, I don't care why it works, because if I let the headache get too bad, then I'm in for a couple of days of misery. That's not comparable to what some of you experience, but I'd just as soon avoid it if possible.

One thing we didn't try is Topamax. So if you have headaches that aren't responding to anything else, maybe ask your doctor about Norgesic Forte. You do have to watch taking it with cold & allergy meds, because it has an antihistamine component. FYI, it is used for tremors in Parkinson's.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Headache questionDate: Tue, 07 Aug 2007 10:29:24 -0000

From what I'm hearing from others, most meds barely touch the headaches. The doc put me on migraine meds at one point but they weren't effective. I haven't tried any of the stronger stuff. Figure I'm punchy enough most of the time...put me on meds & I'll be way out where the buses don't run.Thanks for the suggestions.Peace, Tony> > My headaches returned a few weeks ago, along with the> joint pain & > > skin sarc...at least I had a few months 'off'. Still on 2G of > > cellcept / day. Doesn't seem to be helping much...then again, maybe > > the flare would be much worse without it. I'm not sure what the > > trigger was this time around but can't help but think that the heat > > isn't helping. > > > > I can deal with most of the symptoms but it is really tough to stay > > positive with the intense pressure, the feeling of hot liquid being > > poured over my head & what I refer to as lightening bolts (short, > > sharp pains...now I know how Harry Potter must have felt) from the > > headaches. I know there are no miracle cures out there...just > > wondering if anyone has some tips that might take the edge off.> > > > Peace to all, Tony> > > > > > > > > > > > > > > > ---------------------------------> > Choose the right car based on your needs. Check out Yahoo! Autos> new Car Finder tool.> >>

More photos, more messages, more storage—get 2GB with Windows Live Hotmail.

[Guest guest]

Tony,

What a blessing,

do not feel guilty, sit back and enjoy, and pray it doesn’t come back.

I am so

very happy for you; share this fantastic news with all, blessings, Marla

" Faith

sees the invisible, believes the incredible and receives the impossible "

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Tony

Sent: Tuesday, August 07, 2007

4:16 AM

To: Neurosarcoidosis

Subject: Re:

Headache question

Hi Terri,

I was in remission for a few months. Best 'vacation' I can remember

in a long time. It's hard to say much when I'm feeling better.

Guess I feel guilty for getting better when so many are still in the

throws of the beast. I still get the daily digest and just to keep

up with how everyone is doing. Hope all is well.

Peace to all, Tony

> >

> > My headaches returned a few weeks ago, along with the joint pain

&

> > skin sarc...at least I had a few months 'off'. Still on 2G of

> > cellcept / day. Doesn't seem to be helping much...then again,

maybe

> > the flare would be much worse without it. I'm not sure what the

> > trigger was this time around but can't help but think that the

heat

> > isn't helping.

> >

> > I can deal with most of the symptoms but it is really tough to

stay

> > positive with the intense pressure, the feeling of hot liquid

being

> > poured over my head & what I refer to as lightening bolts (short,

> > sharp pains...now I know how Harry Potter must have felt) from the

> > headaches. I know there are no miracle cures out there...just

> > wondering if anyone has some tips that might take the edge off.

> >

> > Peace to all, Tony

> >

>

[Guest guest]

Rose,

Our situations are so similar. After the Bell's I did develop

trigeminal neuralgia. And then I get the stabbing pains in the back of

my eye, in my ear, etc. I got a prescription today from my rheumy for

that and also for fibromyalgia. I am going to see if it helps any. I

have tried everything else.

Terri G.

[Guest guest]

Rose,

Our situations are so similar. After the Bell's I did develop

trigeminal neuralgia. And then I get the stabbing pains in the back of

my eye, in my ear, etc. I got a prescription today from my rheumy for

that and also for fibromyalgia. I am going to see if it helps any. I

have tried everything else.

Terri G.

[Guest guest]

Becky, I have a question. My neuro says it doesn't mean anything, but I wonder. The first time I had the palsy it started out with a numb tongue, and sharp as a tack nurse that I was, I just thought, huh, that's weird. Never even thought of Bell's palsy until I looked in the mirror a couple of days later & thought, huh, that's weird. I took both the Pred Dos-pak & Acyclovir & the symptoms resolved within a couple of weeks. Then about a year & half later, it started with pain behind my ear, right on the mastoid bone, & spread up the side of head & down into my neck. It was severe pain, but once again, Bell's palsy never crossed my mind, even though I'd had patients with the same presentation. Then in a couple of days, ta-da! This time I just took the Prednisone, figuring it would clear up right away, like the first time. It's odd, because the pain behind my ear & up/down my head resolved shortly after the droop appeared, only to be replaced by the trigeminal neuralgia. Have you heard of different courses & outcomes of Bell's when it presents differently? Just seems like more than coincidence.

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Headache questionDate: Tue, 07 Aug 2007 21:48:44 -0000

Rose,Our situations are so similar. After the Bell's I did developtrigeminal neuralgia. And then I get the stabbing pains in the back ofmy eye, in my ear, etc. I got a prescription today from my rheumy forthat and also for fibromyalgia. I am going to see if it helps any. Ihave tried everything else.Terri G.

A new home for Mom, no cleanup required. All starts here.

[Guest guest]

Becky, I have a question. My neuro says it doesn't mean anything, but I wonder. The first time I had the palsy it started out with a numb tongue, and sharp as a tack nurse that I was, I just thought, huh, that's weird. Never even thought of Bell's palsy until I looked in the mirror a couple of days later & thought, huh, that's weird. I took both the Pred Dos-pak & Acyclovir & the symptoms resolved within a couple of weeks. Then about a year & half later, it started with pain behind my ear, right on the mastoid bone, & spread up the side of head & down into my neck. It was severe pain, but once again, Bell's palsy never crossed my mind, even though I'd had patients with the same presentation. Then in a couple of days, ta-da! This time I just took the Prednisone, figuring it would clear up right away, like the first time. It's odd, because the pain behind my ear & up/down my head resolved shortly after the droop appeared, only to be replaced by the trigeminal neuralgia. Have you heard of different courses & outcomes of Bell's when it presents differently? Just seems like more than coincidence.

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Headache questionDate: Tue, 07 Aug 2007 21:48:44 -0000

Rose,Our situations are so similar. After the Bell's I did developtrigeminal neuralgia. And then I get the stabbing pains in the back ofmy eye, in my ear, etc. I got a prescription today from my rheumy forthat and also for fibromyalgia. I am going to see if it helps any. Ihave tried everything else.Terri G.

A new home for Mom, no cleanup required. All starts here.

[Guest guest]

Rose,

The Norgesic Forte works as a vasodilator. It opens up the blood vessels, and it gives you more oxygen - which will knock out the headache.

and I both use Cataflam for our migraines. It was totally by accident that I found out it worked for a migraine- I was taking it for my back pain-- it is also a great anti-inflammatory- but it was eating up my gut. So I had to stop using it in that manner-- but if I take it when the "light show" begins as the migraines start-- the show ends within minutes (instead of hours) and the headache is dull-- without the stomach upset.

When it worked that well for me, I gave it to - his migraines start the same way- and he now carries it with him all the time. It works so well for him, I don't have to ride his ass to get him to take it!!!!! YEAH!!!!

Those "black holes" you have worry me. They could very well be retinal or macular tears--(as in a torn sheet of paper). Get your MD to refer you to a Retinal Specialist. Do they effect your central vision?

Later,

Tracie

NS Co-owner/moderatorGet a sneak peek of the all-new AOL.com.

[Guest guest]

Rose,

The Norgesic Forte works as a vasodilator. It opens up the blood vessels, and it gives you more oxygen - which will knock out the headache.

and I both use Cataflam for our migraines. It was totally by accident that I found out it worked for a migraine- I was taking it for my back pain-- it is also a great anti-inflammatory- but it was eating up my gut. So I had to stop using it in that manner-- but if I take it when the "light show" begins as the migraines start-- the show ends within minutes (instead of hours) and the headache is dull-- without the stomach upset.

When it worked that well for me, I gave it to - his migraines start the same way- and he now carries it with him all the time. It works so well for him, I don't have to ride his ass to get him to take it!!!!! YEAH!!!!

Those "black holes" you have worry me. They could very well be retinal or macular tears--(as in a torn sheet of paper). Get your MD to refer you to a Retinal Specialist. Do they effect your central vision?

Later,

Tracie

NS Co-owner/moderatorGet a sneak peek of the all-new AOL.com.

[Guest guest]

Tracie, Rose,...whomever; What kind of test/scan do you request when you are concerned that you may have brain/head sarc involvement? And would that show everything inside and outside of the brain including your neck? I have an ache on the lower back of my head that just won't go away. This last week there is added pressure and tightness. I wake up feeling like crying every morning. I also feel light-headed and dizzy. My gp had said he would order a scan if I wanted but it probably wouldn't show anything. I think to be on the safe side I should. And then see a neurologist cuz my gp isn't of much use to me anymore. This whole thing is way beyond him. I've been putting off seeing other doctors for awhile and dealing with any of this. Yeah, I know....denial. And tired of the BS continually cuz the

docs know nothing. But this year has been extra bad for me and I've got to get off my ass and get some help. If I'm going to live(with this sarc crap) then I've got to work for quality of life. hugs S.tiodaat@... wrote: Rose, The Norgesic Forte works as a vasodilator. It opens up the blood vessels, and it gives you more oxygen - which will knock out the headache. and I both use Cataflam for our migraines. It was totally by accident that I found out it worked for a migraine- I was taking it for my back pain-- it is also a great anti-inflammatory- but it was eating up my gut. So I had to stop using it in that manner-- but if I take it when the "light show" begins as the migraines start-- the show ends within minutes (instead of hours) and the headache is dull-- without the stomach upset. When it worked that well for me, I gave it to - his migraines start the same way- and he now carries it with him all the time. It works so well for him, I don't have to ride his ass to get him to take it!!!!! YEAH!!!! Those "black holes" you have worry me. They could very well be retinal or macular tears--(as in a torn sheet of paper). Get your MD to refer you to a Retinal Specialist. Do they effect your central vision? Later, Tracie NS Co-owner/moderatorGet a sneak peek of the all-new AOL.com.

Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games.

[Guest guest]

Those "black holes" you have worry me. They could very well be retinal or macular tears--(as in a torn sheet of paper). Get your MD to refer you to a Retinal Specialist. Do they effect your central vision?

Tracie, that's not me with the black holes, but thank you for your concern. And thanks for the explanation on why the Norgesic Forte helps.

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

From: tiodaat@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Re: Headache questionDate: Wed, 8 Aug 2007 15:47:27 EDT

Rose,

The Norgesic Forte works as a vasodilator. It opens up the blood vessels, and it gives you more oxygen - which will knock out the headache.

and I both use Cataflam for our migraines. It was totally by accident that I found out it worked for a migraine- I was taking it for my back pain-- it is also a great anti-inflammatory- but it was eating up my gut. So I had to stop using it in that manner-- but if I take it when the "light show" begins as the migraines start-- the show ends within minutes (instead of hours) and the headache is dull-- without the stomach upset.

When it worked that well for me, I gave it to - his migraines start the same way- and he now carries it with him all the time. It works so well for him, I don't have to ride his ass to get him to take it!!!!! YEAH!!!!

Those "black holes" you have worry me. They could very well be retinal or macular tears--(as in a torn sheet of paper). Get your MD to refer you to a Retinal Specialist. Do they effect your central vision?

Later,

Tracie

NS Co-owner/moderator

Get a sneak peek of the all-new AOL.com.

Learn.Laugh.Share. Reallivemoms is right place!

[Guest guest]

, I'm sorry that you are so miserable. You could have an MRI of your brain, but chances are it would be negative. An actual lesion might show up, but often sarc causes vasculitis in the brain (inflammation of the blood vessels), which doesn't show up. Of course, tumors & other brain abnormalities unrelated to sarc would likely be seen.

I think it's a good idea to see a neurologist, but don't let him/her just give you a prescription. Make sure you have a thorough exam & also a thorough history, especially of the head pain.

The pain you describe sounds like muscle tension, which can cause excruciating pain. Tracie & I are both involved in stress reduction to reduce or relieve pain. She's been teaching it for awhile & I just completed an 8-week class. But I absolutely believe in it. Before the class, I had pretty much decided that I was going to have lower back surgery this fall; I even had a note on my calendar for August: call to schedule back surgery. But after learning MBSR (mindfulness-based stress reduction), I have no interest in surgery. Am I totally free of back pain? No, but it's back down to a manageable & tolerable level after 2 years of truly debilitating pain. I was very skeptical of this technique & only attended the class because of the trust & high regard I had for the doctor teaching it. But now I'm a true believer! I have well-documented damage to my entire spine, including several bulging or herniated disks, spinal stinosis & pressure on nerve roots. Yet by doing nothing more than learning to breathe, relax & let go of my worries for a bit, the pain has lessened to the point that I haven't taken a Percocet in several weeks (I used to have take one nearly every night to be able to sleep).

I'd love for you, and anyone else interested in learning the basics of MBSR, to meet Tracie & I in the chat room sometime for a special session. I know that Tracie isn't feeling well right now, and she can probably explain it much better than I can, but if you feel you can't wait a few days until she's up & at 'em, I'll do my best. We could also talk on the phone if you want. I have more rollover minutes on my cell phone than I'll ever use, so I could call you & we could talk as long as you want. If you are interested, send your phone number & a good time to call to me at: mamadogrose@.... If you want to meet in the chatroom, let me know a good time. We could do IM, but I'm not very good at that, for some reason. Tomorrow evening, Friday, I will be at the Indiana State Fair with my grandkids, but I should be available any other time the next couple of days to talk by phone or chatroom.

Meanwhile, have you tried alternately ice & heat to the back of your head? , get an appointment with a neurologist to make sure that the pain isn't resulting from some other problem. And I want to emphasize that pain caused by muscle tension is real, and not to be ignored. This pain usually starts with an injury of some type, which heals, but fear & stress cause us to tighten up as a protective mechanism, which increases & prolongs the pain. Just the general stress of life, plus all the crises & family demands, cause muscle tension, especially in the neck & back. So the pain is very real, but can be relieved without drugs or surgery.

Here is a good website to help understand this process of pain, and the MBSR approach to it. It's actually a site for selling tapes & cd's, but has a brief explanation, as well as a link to Oprah.com, where you can print out a couple of one-page guides. I would recommend this to anyone, but don't feel so intimidated by the guidelines that you decide not to try. Just do one thing, whenever you can, and gradually work up to more. I believe that this is one of the most transforming things we can do!

http://www.mindfulnesstapes.com/

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

More photos, more messages, more storage—get 2GB with Windows Live Hotmail.

[Guest guest]

, I'm sorry that you are so miserable. You could have an MRI of your brain, but chances are it would be negative. An actual lesion might show up, but often sarc causes vasculitis in the brain (inflammation of the blood vessels), which doesn't show up. Of course, tumors & other brain abnormalities unrelated to sarc would likely be seen.

I think it's a good idea to see a neurologist, but don't let him/her just give you a prescription. Make sure you have a thorough exam & also a thorough history, especially of the head pain.

The pain you describe sounds like muscle tension, which can cause excruciating pain. Tracie & I are both involved in stress reduction to reduce or relieve pain. She's been teaching it for awhile & I just completed an 8-week class. But I absolutely believe in it. Before the class, I had pretty much decided that I was going to have lower back surgery this fall; I even had a note on my calendar for August: call to schedule back surgery. But after learning MBSR (mindfulness-based stress reduction), I have no interest in surgery. Am I totally free of back pain? No, but it's back down to a manageable & tolerable level after 2 years of truly debilitating pain. I was very skeptical of this technique & only attended the class because of the trust & high regard I had for the doctor teaching it. But now I'm a true believer! I have well-documented damage to my entire spine, including several bulging or herniated disks, spinal stinosis & pressure on nerve roots. Yet by doing nothing more than learning to breathe, relax & let go of my worries for a bit, the pain has lessened to the point that I haven't taken a Percocet in several weeks (I used to have take one nearly every night to be able to sleep).

I'd love for you, and anyone else interested in learning the basics of MBSR, to meet Tracie & I in the chat room sometime for a special session. I know that Tracie isn't feeling well right now, and she can probably explain it much better than I can, but if you feel you can't wait a few days until she's up & at 'em, I'll do my best. We could also talk on the phone if you want. I have more rollover minutes on my cell phone than I'll ever use, so I could call you & we could talk as long as you want. If you are interested, send your phone number & a good time to call to me at: mamadogrose@.... If you want to meet in the chatroom, let me know a good time. We could do IM, but I'm not very good at that, for some reason. Tomorrow evening, Friday, I will be at the Indiana State Fair with my grandkids, but I should be available any other time the next couple of days to talk by phone or chatroom.

Meanwhile, have you tried alternately ice & heat to the back of your head? , get an appointment with a neurologist to make sure that the pain isn't resulting from some other problem. And I want to emphasize that pain caused by muscle tension is real, and not to be ignored. This pain usually starts with an injury of some type, which heals, but fear & stress cause us to tighten up as a protective mechanism, which increases & prolongs the pain. Just the general stress of life, plus all the crises & family demands, cause muscle tension, especially in the neck & back. So the pain is very real, but can be relieved without drugs or surgery.

Here is a good website to help understand this process of pain, and the MBSR approach to it. It's actually a site for selling tapes & cd's, but has a brief explanation, as well as a link to Oprah.com, where you can print out a couple of one-page guides. I would recommend this to anyone, but don't feel so intimidated by the guidelines that you decide not to try. Just do one thing, whenever you can, and gradually work up to more. I believe that this is one of the most transforming things we can do!

http://www.mindfulnesstapes.com/

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

More photos, more messages, more storage—get 2GB with Windows Live Hotmail.

[Guest guest]

, So sorry to hear of the issues you are having with the back of your head/neck. I have problems with my neck, degeneration in disks. But you sound like you are in a much more state of pain. I don't know about any tests, I am sorry. I agree about PCP's . They are useless and mine just ends up sending me somewhere else. I go to a neurologist. I do think you should go to a neuro dr. though. At least he knows more about what's going on in that area. I wish you luck and hope you get a "good one". You know as well as I, good drs are hard to come by! Hope this helps, Debbie Solberg wrote: Tracie, Rose,...whomever;

What kind of test/scan do you request when you are concerned that you may have brain/head sarc involvement? And would that show everything inside and outside of the brain including your neck? I have an ache on the lower back of my head that just won't go away. This last week there is added pressure and tightness. I wake up feeling like crying every morning. I also feel light-headed and dizzy. My gp had said he would order a scan if I wanted but it probably wouldn't show anything. I think to be on the safe side I should. And then see a neurologist cuz my gp isn't of much use to me anymore. This whole thing is way beyond him. I've been putting off seeing other doctors for awhile and dealing with any of this. Yeah, I know....denial. And tired of the BS continually cuz the docs know nothing. But this year has been extra bad for me and I've got to get off my ass and get some help. If I'm going to

live(with this sarc crap) then I've got to work for quality of life. hugs S.tiodaat@... wrote: Rose, The Norgesic Forte works as a vasodilator. It opens up the blood vessels, and it gives you more oxygen - which will knock out the headache. and I both use Cataflam for our migraines. It was totally by accident that I found out it worked for a migraine- I was taking it for my back pain-- it is also a great anti-inflammatory- but it was eating up my gut. So I had to stop using it in that manner-- but if I take it when the "light show" begins as the migraines start-- the show ends within minutes

(instead of hours) and the headache is dull-- without the stomach upset. When it worked that well for me, I gave it to - his migraines start the same way- and he now carries it with him all the time. It works so well for him, I don't have to ride his ass to get him to take it!!!!! YEAH!!!! Those "black holes" you have worry me. They could very well be retinal or macular tears--(as in a torn sheet of paper). Get your MD to refer you to a Retinal Specialist. Do they effect your central vision? Later, Tracie NS Co-owner/moderator Get a sneak peek of the all-new AOL.com. Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games.

Choose the right car based on your needs. Check out Yahoo! Autos new Car Finder tool.

[Guest guest]

Everyone knows that head-neck stiffness can be a sign of CSF hypertension.. (hydrocephalus) or meningitis and it can be very dangerous if left untreated.. Another symptom is papilledema (bulging of the optc nerve head) which a doctor can examine you for..

Sorry to bring this up if everybody already knows it...

[Guest guest]

Everyone knows that head-neck stiffness can be a sign of CSF hypertension.. (hydrocephalus) or meningitis and it can be very dangerous if left untreated.. Another symptom is papilledema (bulging of the optc nerve head) which a doctor can examine you for..

Sorry to bring this up if everybody already knows it...