Re: Headaches

May 19, 2002

Sally

I had/have headaches too. Mine are not the ones likes yours and the others. I have the full blow Migraines.

I never had headaches before the RP. Makes you wonder if it isn't the meds or something to do with having RP.

My headaches start with the very bright lights and four or so hours later I get the headache. The last two I had I thought I was having a stroke. One side of my body went numb. Speech was slurred and the whole nine yards. Pretty scary!

The Dr. seemed to think the head ache was caused from eating one of the following: MSG's, Chocolate, or Nutra Sweet. Since the last headache I have completely quit eating/drinking anything with aspertaine, limit my intake of MSG's and hardly ever eat chocolate.

I have only had a small migraine since I have cut back on all these so there must have been some connection there. Who knows but will do anything not to have another one of those kind of migraines.

Sorry to go on but thought I would put my too cents in too!

Lots of love

Glenda

August 5, 2004

Liquid Tylenol or Extra Strength Tylenol

Lap RNY April 9, 2004

348/277/140 (begin/current/goal)

www.carrieburns.net

> What's the best thing to take for a headache?

>

August 5, 2004

tylenol, or your liquid loratab from the hosital...

--- vemac2001 wrote:

> What's the best thing to take for a headache?

>

August 12, 2010

Matt, have you been tested for meningitis? Seems like we have had members with headaches as the main symptom. I believe you need a spinal tap for that. Hopefully, we'll get some feedback from others with headaches.

Ramblin' RoseModerator

It's not that life is so short-------It's that we wait so long to begin.

(attributed to Wooden, among others)

> To: Neurosarcoidosis > Date: Thu, 12 Aug 2010 23:51:37 +0000> Subject: headaches> > I have been getting bad headaches for the last 2 years and have had 3 mri which show nothing.I Have been on several different pain meds and nothing seems to work. Am wondering one, if others get headaches with no signs of sarc and two, what if any treatments helped. It really effects my memory and ability to do even day to day activities. Thanks, Matt > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

August 12, 2010

First what part of your head are the headaches in? Are they always in the same place? Do they move (start in one place and move)? What do they feel like (throbbing, sharp etc)? How often do you get them? What time of day? What makes them better?What makes them worse? Lastly what pain meds have you taken for them or anything else (just the pain meds you've been on since you started to get them. Even if it's not for the headaches.

Mitch

headaches

I have been getting bad headaches for the last 2 years and have had 3 mri which show nothing.I Have been on several different pain meds and nothing seems to work. Am wondering one, if others get headaches with no signs of sarc and two, what if any treatments helped. It really effects my memory and ability to do even day to day activities. Thanks, Matt

August 12, 2010

My main complaint has always been severe head pain. I have been on duragestic patch n. Daludid for many years. N I agree with rose get a spinal tap I had 5. N each one showed a lot of inflammation. If not for 24hr pain control I would be in severe head pain all the time. Sent via BlackBerry by AT&TSender: Neurosarcoidosis Date: Thu, 12 Aug 2010 22:57:54 -0400To: <neurosarcoidosis >ReplyTo: Neurosarcoidosis Subject: RE: headaches Matt, have you been tested for meningitis? Seems like we have had members with headaches as the main symptom. I believe you need a spinal tap for that. Hopefully, we'll get some feedback from others with headaches.Ramblin' RoseModerator It's not that life is so short-------It's that we wait so long to begin. (attributed to Wooden, among others) > To: Neurosarcoidosis > Date: Thu, 12 Aug 2010 23:51:37 +0000> Subject: headaches> > I have been getting bad headaches for the last 2 years and have had 3 mri which show nothing.I Have been on several different pain meds and nothing seems to work. Am wondering one, if others get headaches with no signs of sarc and two, what if any treatments helped. It really effects my memory and ability to do even day to day activities. Thanks, Matt > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database> >

August 25, 2010

OH Matt, I'm so sorry I didn't get back to you sooner, so much has been going on in my life, Yes I get headaches every day, and there getting worse, I mentioned it to my doc and he says well since the last MRI didn't show anything, I doubt this one would,

so he said he would talk with the Neuro, and get back to me, but hasn't called me back, sothe Neuro probably agrees, When I started Lyceria, it helped, and sometimes I would even take two, but even that doesn't seem to help, the biggest issue with me an headaches, is

they will actually wake me up out of a dead sleep, that really sucks. I wish I had something to tell you, I do at least get some relief from mixing Tylenol with Advil, that seems to help the most, as I can't take anything else, they just make me sick. If I get a really bad one,

that I can't go to sleep because of, I will take a lot of anti-nausea, then half a vicoden, if I fall asleep I won't get sick. If you come up with any ideas, or any one else let us know. I wish I had good news for you. I do however find that, the more hydrated I am, the less severe

the pain is, although there is still pain:(. Blessings,Marla

I have been getting bad headaches for the last 2 years and have had 3 mri which show nothing.I Have been on several different pain meds and nothing seems to work. Am wondering one, if others get headaches with no signs of sarc and two, what if any treatments helped. It really effects my memory and ability to do even day to day activities. Thanks, Matt

September 4, 2010

Yes Connie, I get the ones like your talking about, and I too am on Lyrica, it's very helpful, but I still get them, especially if I get too tired.

When you guys say headache, are you talking like regular headache, or sharp " lightening " like pain particularly on one side of your head. I have trigeminal neuralgia which does the lightening thing, or if it gets bad enough feels like you are being repeatedly show in the head. The neuro gave me Lyrica which controls it very well.

To: Neurosarcoidosis

Sent: Sat, August 28, 2010 12:42:31 PMSubject: Re: Re: headaches

Well Boys wish I had some good news, but I'm right there with you. Headaches every single day, and I too wake up with them in the night, or early morning, I get up take Advil a big glass of water and go back to bed. I also get them through the

day, so it seems like I always have headaches any more, have one now:( I for one am sick of them, I too, had a neg MRI, but according to my symptoms, the fact that I can lift my legs up off the ground, can't walk very far, and can't lift my feet up

very far when walking, I walk to a point, then I can walk no further, so my Neuro saysI have lesions in the base of the brain, and down the spines. I wonder if a Gallium Scanwould show these, I've never had one of those.

Dehydration is bad for anyone, but especially if you have a disease, it is important for us to keep our water up, and our salt down, however, I have been on a heart

healthy diet, since my husbands heart attack, so you would think that would help, but I feel like I'm getting slightly worse. I too wake up at night and drink water, just another way of our body telling us we need water. I drink a full glass of water at night when I take my

nightly drugs. I for one am just sick and tired of being sick and tired. Blessings to all, Marla

This is an interesting thread. For some time, I have been woken in the middle of the night with a headache that totally prevents me from getting back to sleep. However, if I drink a glass of water, I am back to sleep almost immediately. This can happen once, twice or three times a night, as it did last night. It has been better recently, as the MTX has started to act

One thing we have done is to stop using salt in our cooking. Last night, we went for an Indian meal that was full of salt - and I was up three times to drink water!I am curious to know why the sarc monster has a take on this. Does anyone know?

Incidentally, we have both been suffering with a low grade viral infection for the past three weeks (for Heddwen) and two weeks for me. We have a good marriage and frequently give each other gifts! Apart from the usual runny nose, blocked sinuses, headache and flu-like feeling, the wierd one is that the teeth are highly

sensitive to cold. Some ice cream last night was quite painful. Of course, it also irritates the sarc monster.I have been taking a UK-based over-the-counter drug called Hedex, which is a mixture of paracetamol and caffeine, which seems to take the edge off. Does anyone know if there is any effect on MTX, Pred, Folic Acid or Omprezol from this? I would hate to mess up what thyey are doing. We don't get Tylonol or Advil easily over here.

Incidentally, does anyone know why feet smell and noses run? You would have thought it was the other way around!God Bless,

> > >> >> > I have been getting bad headaches for the last 2 years and have had 3 mri> > which show nothing.I Have been on several different pain meds and nothing

> > seems to work. Am wondering one, if others get headaches with no signs of> > sarc and two, what if any treatments helped. It really effects my memory and> > ability to do even day to day activities. Thanks, Matt

> >> > > >>

September 5, 2010

I just wasn't sure. I know people get different kinds, like the people who get migraines. I don't know how they stand it, and I would carry them meds, cool rags, shut the lights off, and dare anyone to get near them. I do not know how they stand it. That is honestly one thing I don't think I could stand. I'll keep my trigem any day, at least it only gets you once in a while, and with the right meds not often at all.

To: Neurosarcoidosis Sent: Sat, September 4, 2010 9:05:57 PMSubject: Re: Re: headaches

Yes Connie, I get the ones like your talking about, and I too am on Lyrica, it's very helpful, but I still get them, especially if I get too tired.

When you guys say headache, are you talking like regular headache, or sharp "lightening" like pain particularly on one side of your head. I have trigeminal neuralgia which does the lightening thing, or if it gets bad enough feels like you are being repeatedly show in the head. The neuro gave me Lyrica which controls it very well.

To: Neurosarcoidosis Sent: Sat, August 28, 2010 12:42:31 PMSubject: Re: Re: headaches

Well Boys wish I had some good news, but I'm right there with you. Headaches every single day, and I too wake up with them in the night, or early morning, I get up take Advil a big glass of water and go back to bed. I also get them through the day, so it seems like I always have headaches any more, have one now:( I for one am sick of them, I too, had a neg MRI, but according to my symptoms, the fact that I can lift my legs up off the ground, can't walk very far, and can't lift my feet up very far when walking, I walk to a point, then I can walk no further, so my Neuro saysI have lesions in the base of the brain, and down the spines. I wonder if a Gallium Scanwould show these, I've never had one of those. Dehydration is bad for anyone, but especially if you have a disease, it is important for us to keep our water up, and our salt down, however, I have been on a heart

healthy diet, since my husbands heart attack, so you would think that would help, but I feel like I'm getting slightly worse. I too wake up at night and drink water, just another way of our body telling us we need water. I drink a full glass of water at night when I take my nightly drugs. I for one am just sick and tired of being sick and tired. Blessings to all, Marla

This is an interesting thread. For some time, I have been woken in the middle of the night with a headache that totally prevents me from getting back to sleep. However, if I drink a glass of water, I am back to sleep almost immediately. This can happen once, twice or three times a night, as it did last night. It has been better recently, as the MTX has started to actOne thing we have done is to stop using salt in our cooking. Last night, we went for an Indian meal that was full of salt - and I was up three times to drink water!I am curious to know why the sarc monster has a take on this. Does anyone know?Incidentally, we have both been suffering with a low grade viral infection for the past three weeks (for Heddwen) and two weeks for me. We have a good marriage and frequently give each other gifts! Apart from the usual runny nose, blocked sinuses, headache and flu-like feeling, the wierd one is that the teeth are highly

sensitive to cold. Some ice cream last night was quite painful. Of course, it also irritates the sarc monster.I have been taking a UK-based over-the-counter drug called Hedex, which is a mixture of paracetamol and caffeine, which seems to take the edge off. Does anyone know if there is any effect on MTX, Pred, Folic Acid or Omprezol from this? I would hate to mess up what thyey are doing. We don't get Tylonol or Advil easily over here.Incidentally, does anyone know why feet smell and noses run? You would have thought it was the other way around!God Bless,

> > >> >> > I have been getting bad headaches for the last 2 years and have had 3 mri> > which show nothing.I Have been on several different pain meds and nothing> > seems to work. Am wondering one, if others get headaches with no signs of> > sarc and two, what if any treatments helped. It really effects my memory and> > ability to do even day to day activities. Thanks, Matt> >> > > >>

I j

September 5, 2010

I use to get Migraines, and yes they are worse in some ways, but not all, I hated that I would vomit when I got them, and yes lights out, But the pain I get now is worse, it just doesn't usually last as long, or sometimes the pain is less and it lasts for hours. the Lyrica has helped me a lot.

Blessings, Marla

I just wasn't sure. I know people get different kinds, like the people who get migraines. I don't know how they stand it, and I would carry them meds, cool rags, shut the lights off, and dare anyone to get near them. I do not know how they stand it. That is honestly one thing I don't think I could stand. I'll keep my trigem any day, at least it only gets you once in a while, and with the right meds not often at all.

To: Neurosarcoidosis

Sent: Sat, September 4, 2010 9:05:57 PMSubject: Re: Re: headaches