headaches

[Guest guest]

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

[Guest guest]

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

> >

> >

> >

>

[Guest guest]

,

In response to your questions about the medicines, I will have to do

some

research before I can attempt to answer those, but...........I do know that

it is

extremely important to drink lots and lots of water. I am not a big water

drinker but I know that I feel lots better and have less sarc problems when

I

drink lots of water. Our system needs it badly and when we do not drink

enough, we have problems. If my water intake is low, I seem to have more

headaches, stomach aches, my muscles hurt, etc......just an overall not

feeling

well.

I will try to do some research and get back with you on the med

answers.

Hopefully someone with a med background can help you too.

Hugs,

Darlene

NS Co-Owner/Moderator

Re: headaches

>

>

> 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

>> >

>> >

>> >

>>

>

>

>

>

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

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

>

>

> Message Archives:-

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[Guest guest]

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

> >

> >

> >

>

[Guest guest]

Let me add on the water issue, see if the cells do not have enough water to do what they need to do,they are " broken " in a way, therefore the body will try and send those cells some help, in a normal person,

that would mean shifting the water around, in a immune deficient person, the fix it cells get involved, therefore saying fix it, living behind it's signature look of Sarcoid another granuloma, thus more symptoms. 

The body needs a lot of water, it is made up mostly of water, the cells would die without it, Blood is made up of alot of water, when you go into get your blood drawn, and don't drink they have trouble finding a good vein,

if however you were to drink a big glass of water or two before getting your blood drawn, it would be so much easierto find a vein.  Does anyone of this make sense, as a nurse, the first thing I use to do when having trouble finding a vein, is to

give the pt. a big glass of water, and say drink it all, then I would put a warm blanket on there arm, as when it's cold the veins go deeper to keep the blood at normal body temp, then after that I usually have no problem drawing there blood.

too much info, or does this help???  Rose can throw in her take on this too. 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

> >

> >

> >

>

[Guest guest]

Paracetamol is the same as Tylenol, according to some Internet sources. It shouldn't interact with the other drugs. It can cause liver damage if used long term, especially regular, frequent use. I wouldn't worry about occasional use. You might talk with your pharmacist to see if there are any likely problems that I am unaware of.

I think you've stumbled across one of those great unanswered questions of why feet smell & noses run! A mystery.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

[Guest guest]

Paracetamol is what they call Tylenol in Europe. At least in the United Kingdom.

RE: Re: headaches

Paracetamol is the same as Tylenol, according to some Internet sources. It shouldn't interact with the other drugs. It can cause liver damage if used long term, especially regular, frequent use. I wouldn't worry about occasional use. You might talk with your pharmacist to see if there are any likely problems that I am unaware of.

I think you've stumbled across one of those great unanswered questions of why feet smell & noses run! A mystery.

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

[Guest guest]

Marla, I think you've said it very well. All I would add is that if the headaches are a new symptom, or are getting worse than previous headaches, you need to talk to your doctor about it.

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 From: mebramer@...Date: Sat, 28 Aug 2010 13:53:34 -0600Subject: Re: Re: headaches

Let me add on the water issue, see if the cells do not have enough water to do what they need to do,they are "broken" in a way, therefore the body will try and send those cells some help, in a normal person, that would mean shifting the water around, in a immune deficient person, the fix it cells get involved, therefore saying fix it, living behind it's signature look of Sarcoid another granuloma, thus more symptoms. The body needs a lot of water, it is made up mostly of water, the cells would die without it, Blood is made up of alot of water, when you go into get your blood drawn, and don't drink they have trouble finding a good vein, if however you were to drink a big glass of water or two before getting your blood drawn, it would be so much easierto find a vein. Does anyone of this make sense, as a nurse, the first thing I use to do when having trouble finding a vein, is togive the pt. a big glass of water, and say drink it all, then I would put a warm blanket on there arm, as when it's cold the veins go deeper to keep the blood at normal body temp, then after that I usually have no problem drawing there blood. too much info, or does this help??? Rose can throw in her take on this too. 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> >> > > >>

[Guest guest]

I feel your pain. I am just like you when it comes to the headaches. I also have migraines. It is a on going thing. I take strong pain meds when it is really bad. My Dr told me to do yoga but that doesn't help. 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

> >

> >

> >

>

[Guest guest]

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> >> > > >>

[Guest guest]

It sounds more to me that your sarc has gone systemic, (don't panic it's ok) The fire and stinging is usually caused by a form of neuropathy, diabetic or sensory. I use lyrica for this and it works really well. If you don't have insurance (Lyrica is expensive) you can get it free or for only a couple of dollars for a three month supply at NeedyMeds.org. This is a site run by the pharmaceutical companies, there is no obligation and you don't have to join anything. You find your medicine, brand name or generic, (Lyrica is a brand name), pull the the (1) page application fill out your name and address on the top, take the rest to your doctor; he fills it out attachs your prescription and sends it in. Next thing you know...medicine. The most I

have ever seen a prescription cost is $6.50 for a three month supply. I have known of them filling a migraine prescription for injectable Immitrex for a client ($300.00 prescription) and supply the syringes and alcohol preps for $0.00. My niece has no ins and horrible asthma, they supply all her very expensive asthma medicine free. (I found out about this site when I worked for Vocational Rehabilitation in 2004 for a little while (hated it) and came upon this site. It helped alot of our clients, to this day I send out a letter to my claimants applying for disability, when I read in their medical records or they tell me that they can not afford a medicine because of lack of insurance, with the information.

Also if the headaches have a nerve component, they can be helped too.

To: Neurosarcoidosis Sent: Sun, September 5, 2010 8:28:24 PMSubject: Re: headaches

Recently I have been getting migraines - haven't had any in 25 years. They cause vision distortion - I just started taking over the counter Percogesic and it helps with the pain. However my mind doesn't function well for the rest of the day. Forget about remembering anything! I got new glasses one month ago and need a new prescription already. I have bouts of inflammed retinas often and my opthamologist sees me as soon as I call - always inflammation. I also have been having tremendous pain to my right leg around the knee area - burning and feels like hundreds of pins sticking in my leg.Drs haven't done anything but ACE and chest xrays for the past 15 years or so. I have only been diagnosed with sarcoidosis - could I have neurosarcoidosis?Thanks for your feedbackPam> >>

> >> >> >> >> >> > 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> >> >> >> > > >> >> >>> >> >>

[Guest guest]

I'm not on O2 but wake up with a headache almost every day, I had a sleep study but that was about 20 lbs ago, I told my doctor, I get out of breath just walking, and he had his nurse walk with me, and my sat's stayed in the 90's. I just take my pills and Advil every morning and again around 4 the headache comes back, so more advil.

I'm seeing my Family doc today, as I am having trouble with nausea especially after eating, and I have been what I am calling gas bubbles, painful, but I want to make sure it's not my liver, I'm thinking more Gall Bladder??   Don't think it's the Sarc.

We'll let you know. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

I have a sick headache almost every morning, especially if I am without oxygen or it has been accidently disconnected by my puppy.  I have central apnea from the neurosarc.  I used to also have obstructive apnea when I was much heavier, but the sleep dock took me off of the bipap when I was showing signs that is wasn't helping the central apnea at all. Are you on oxygen at night?

To: Neurosarcoidosis

Sent: Sat, February 12, 2011 12:54:20 AMSubject: Re: Re: New Symptom

 

Thanks Rose. Will keep you posted.

To: neurosarcoidosis

Sent: Fri, February 11, 2011 11:16:57 PMSubject: RE: Re: New Symptom 

La, I've not been cursed with bad headaches (knock on particle board), but many list members have.  I agree with Marla on getting the shunt checked out, or calling your neurologist & describing them.  It may be a type of migraine, but with the NS you want to get evaluated, so that you can get an effective treatment.  Let us know what happens, okay?

Ramblin' RoseModerator

  " I child-proofed my home and they STILL get in! "      (Bumper sticker)

 

To: Neurosarcoidosis From: mebramer@...Date: Fri, 11 Feb 2011 14:01:27 -0700

Subject: Re: Re: New SymptomFirst your not Complaining, that's what we are here for to help you.  I don't have a shunt, but I do have all the same symptoms you are describing, on the left side too.

Of course it would probably still be a good idea to get the shunt check out to make sure it's working ok, Just yesterday my face hurt so bad, I spent most of the day lying my face left side on a heating pad.  I have a new symptom, the top part of my lip, left side only feels numb and thick just like when the Dentist numbs you up, it works fine, but the numb feeling comes and goes by the min. it's really strange, but most of my symptoms are.

Please always feel free to ask questions. MarlaJust one day at a time, That's all God ask of

us. for there never really is a tomorrow, as that too is just today:)  

 

 

I have a new symptom and I have not been feeling well for a while. Wondering if this is sarc or the vp shunt. I am experiencing extremely bad headaches on the left side of my head. face, nose and eye (my shunt is on the right side). At times I get nautious and it hurts so bad that I cannot even get comfortable laying down. The headache never seems to go away and gets worse when I get excited or upset. What next man?! I am so tired of complaining and not feeling well.   

Don't be flakey. Get Yahoo! Mail for Mobile and always stay connected to friends.

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[Guest guest]

What part of your head are you getting the Headaches? This can give us a better idea what is causing it.

Re: Re: New Symptom

First your not Complaining, that's what we are here for to help you.

I don't have a shunt, but I do have all the same symptoms you are describing, on the left side too.

Of course it would probably still be a good idea to get the shunt check out to make sure it's working ok,

Just yesterday my face hurt so bad, I spent most of the day lying my face left side on a

heating pad. I have a new symptom, the top part of my lip, left side only feels numb and thick just like when the Dentist numbs you up, it works fine, but the numb feeling comes and goes by the min. it's really strange, but most of my symptoms are.

Please always feel free to ask questions.

Marla

Just one day at a time, That's all God ask of

us. for there never really is a tomorrow, as that too

is just today:)

I have a new symptom and I have not been feeling well for a while. Wondering if this is sarc or the vp shunt. I am experiencing extremely bad headaches on the left side of my head. face, nose and eye (my shunt is on the right side). At times I get nautious and it hurts so bad that I cannot even get comfortable laying down. The headache never seems to go away and gets worse when I get excited or upset. What next man?! I am so tired of complaining and not feeling well.

Don't be flakey. Get Yahoo! Mail for Mobile and

always stay connected to friends.

Now that's room service! Choose from over 150,000 hotels

in 45,000 destinations on Yahoo! Travel to find your fit.

[Guest guest]

Please keep us posted on what the doctor says. I wake up with a headache everyday as well and am having some stomach trouble. I hope they can get to the bottom of this.

To: Neurosarcoidosis Sent: Tue, February 15, 2011 2:38:15 PMSubject: Re: Headaches

What part of your head are you getting the Headaches? This can give us a better idea what is causing it.

Re: Re: New SymptomFirst your not Complaining, that's what we are here for to help you. I don't have a shunt, but I do have all the same symptoms you are describing, on the left side too. Of course it would probably still be a good idea to get the shunt check out to make sure it's working ok, Just yesterday my face hurt so bad, I spent most of the day lying my face left side on a heating pad. I have a new symptom, the top part of my lip, left side only feels numb and thick just like when the Dentist numbs you up, it works fine, but the numb

feeling comes and goes by the min. it's really strange, but most of my symptoms are. Please always feel free to ask questions. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

I have a new symptom and I have not been feeling well for a while. Wondering if this is sarc or the vp shunt. I am experiencing extremely bad headaches on the left side of my head. face, nose and eye (my shunt is on the right side). At times I get nautious and it hurts so bad that I cannot even get comfortable laying down. The headache never seems to go away and gets worse when I get excited or upset. What next man?! I am so tired of complaining and not feeling well.

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[Guest guest]

You know that's a very good question?  Not sure I've paid that much attention, just know I have one, take something for it,  I get one about now too, and I notice it creeping up on the Left side? hmm

MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

What part of your head are you getting the Headaches? This can give us a better idea what is causing it.

Re: Re: New Symptom

First your not Complaining, that's what we are here for to help you. 

I don't have a shunt, but I do have all the same symptoms you are describing, on the left side too.

Of course it would probably still be a good idea to get the shunt check out to make sure it's working ok,

Just yesterday my face hurt so bad, I spent most of the day lying my face left side on a

heating pad.  I have a new symptom, the top part of my lip, left side only feels numb and thick just like when the Dentist numbs you up, it works fine, but the numb feeling comes and goes by the min. it's really strange, but most of my symptoms are.

Please always feel free to ask questions.

Marla

Just one day at a time, That's all God ask of

us. for there never really is a tomorrow, as that too

is just today:)  

 

 

I have a new symptom and I have not been feeling well for a while. Wondering if this is sarc or the vp shunt. I am experiencing extremely bad headaches on the left side of my head. face, nose and eye (my shunt is on the right side). At times I get nautious and it hurts so bad that I cannot even get comfortable laying down. The headache never seems to go away and gets worse when I get excited or upset. What next man?! I am so tired of complaining and not feeling well.   

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[Guest guest]

If you keep track of them for a few days. Write it down, where they start, if they stay in same place or move (with and without pain meds) ie if it's in the back of your head but after you take a motrin it moves to the front or if you take codeine and it moves to the side. Be as specific as you can be and let me know. This is what I do for a living and if I can help it would be my pleasure

Re: Re: New Symptom

First your not Complaining, that's what we are here for to help you.

I don't have a shunt, but I do have all the same symptoms you are describing, on the left side too.

Of course it would probably still be a good idea to get the shunt check out to make sure it's working ok,

Just yesterday my face hurt so bad, I spent most of the day lying my face left side on a

heating pad. I have a new symptom, the top part of my lip, left side only feels numb and thick just like when the Dentist numbs you up, it works fine, but the numb feeling comes and goes by the min. it's really strange, but most of my symptoms are.

Please always feel free to ask questions.

Marla

Just one day at a time, That's all God ask of

us. for there never really is a tomorrow, as that too

is just today:)

I have a new symptom and I have not been feeling well for a while. Wondering if this is sarc or the vp shunt. I am experiencing extremely bad headaches on the left side of my head. face, nose and eye (my shunt is on the right side). At times I get nautious and it hurts so bad that I cannot even get comfortable laying down. The headache never seems to go away and gets worse when I get excited or upset. What next man?! I am so tired of complaining and not feeling well.

Don't be flakey. Get Yahoo! Mail for Mobile and

always stay connected to friends.

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[Guest guest]

Sounds like most of us have headaches. I have them all the time too. Most of the time they are migraines. I will go to bed and wake up with them. Take strong pain med and it does help some. Feel better soon! anna Re: Re: New Symptom

First your not Complaining, that's what we are here for to help you.

I don't have a shunt, but I do have all the same symptoms you are describing, on the left side too.

Of course it would probably still be a good idea to get the shunt check out to make sure it's working ok,

Just yesterday my face hurt so bad, I spent most of the day lying my face left side on a

heating pad. I have a new symptom, the top part of my lip, left side only feels numb and thick just like when the Dentist numbs you up, it works fine, but the numb feeling comes and goes by the min. it's really strange, but most of my symptoms are.

Please always feel free to ask questions.

Marla

Just one day at a time, That's all God ask of

us. for there never really is a tomorrow, as that too

is just today:)

I have a new symptom and I have not been feeling well for a while. Wondering if this is sarc or the vp shunt. I am experiencing extremely bad headaches on the left side of my head. face, nose and eye (my shunt is on the right side). At times I get nautious and it hurts so bad that I cannot even get comfortable laying down. The headache never seems to go away and gets worse when I get excited or upset. What next man?! I am so tired of complaining and not feeling well.

Don't be flakey. Get Yahoo! Mail for Mobile and

always stay connected to friends.

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[Guest guest]

This is what my problem is, I'm on Lyrica, and when I would take it at night I would have trouble sleeping, so I started not taking it at night and I sleep better, and stay asleep, but the trade off is waking up in pain, usually Left sided head pain, nerve pain, but if I take the Lyrica, then I have trouble with sleep, and then I don't feel good all day because I'm tired.  So now when I get up I take 2 Advils and it goes away, I also take my Lyrica right when I wake up, and again around 3,

just not at bed time.  Does that make any sense.  MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)  

 

If you keep track of them for a few days. Write it down, where they start, if they stay in same place or move (with and without pain meds) ie if it's in the back of your head but after you take a motrin it moves to the front or if you take codeine and it moves to the side. Be as specific as you can be and let me know. This is what I do for a living and if I can help it would be my pleasure

Re: Re: New Symptom

First your not Complaining, that's what we are here for to help you. 

I don't have a shunt, but I do have all the same symptoms you are describing, on the left side too.

Of course it would probably still be a good idea to get the shunt check out to make sure it's working ok,

Just yesterday my face hurt so bad, I spent most of the day lying my face left side on a

heating pad.  I have a new symptom, the top part of my lip, left side only feels numb and thick just like when the Dentist numbs you up, it works fine, but the numb feeling comes and goes by the min. it's really strange, but most of my symptoms are.

Please always feel free to ask questions.

Marla

Just one day at a time, That's all God ask of

us. for there never really is a tomorrow, as that too

is just today:)  

 

 

I have a new symptom and I have not been feeling well for a while. Wondering if this is sarc or the vp shunt. I am experiencing extremely bad headaches on the left side of my head. face, nose and eye (my shunt is on the right side). At times I get nautious and it hurts so bad that I cannot even get comfortable laying down. The headache never seems to go away and gets worse when I get excited or upset. What next man?! I am so tired of complaining and not feeling well.   

Don't be flakey. Get Yahoo! Mail for Mobile and

always stay connected to friends.

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[Guest guest]

It does but before we get into complicated issues. Have you ever tried Melatonin for sleep when you take the Lyrica? Melatonin when taken correctly has to work because it is actually the hormone that makes us go to sleep. The only time I have people that don't get great results with it is when they don't follow my instructions exactly. Sometimes especially when we have people with other problems ie. cancer, Auto-immune diseases (I could go over what those are but you'd hit me ) etc. we sometimes have to go much higher then the normal doses and we have to keep increasing until we find how much you need. If your interested in trying it. E-mail me your address and phone number to my e-mail address mjcv29a@... and I'll send you out a bottle tomorrow (on me).

I'm not in today. I had oral surgery yesterday and am in a lot of physical pain with my mouth and I had to decrease my prednisone for the surgery so everything else hurts. It's also the 5th anniversary since my Dad passed and I keep going into crying fits which makes everything else hurt.

If you have any other questions or want to get into the headache thing further let me know. My suspicion is your getting left temporal headaches as a result of not taking the Lyrica and the easiest thing would be able to have you keep taking the Lyrica and sleeping at the same time. it gets a bit more complicated from there but i always go with the KISS principle first

Mitch

Re: Re: New Symptom

First your not Complaining, that's what we are here for to help you.

I don't have a shunt, but I do have all the same symptoms you are describing, on the left side too.

Of course it would probably still be a good idea to get the shunt check out to make sure it's working ok,

Just yesterday my face hurt so bad, I spent most of the day lying my face left side on a

heating pad. I have a new symptom, the top part of my lip, left side only feels numb and thick just like when the Dentist numbs you up, it works fine, but the numb feeling comes and goes by the min. it's really strange, but most of my symptoms are.

Please always feel free to ask questions.

Marla

Just one day at a time, That's all God ask of

us. for there never really is a tomorrow, as that too

is just today:)

I have a new symptom and I have not been feeling well for a while. Wondering if this is sarc or the vp shunt. I am experiencing extremely bad headaches on the left side of my head. face, nose and eye (my shunt is on the right side). At times I get nautious and it hurts so bad that I cannot even get comfortable laying down. The headache never seems to go away and gets worse when I get excited or upset. What next man?! I am so tired of complaining and not feeling well.

Don't be flakey. Get Yahoo! Mail for Mobile and

always stay connected to friends.

Now that's room service! Choose from over 150,000 hotels

in 45,000 destinations on Yahoo! Travel to find your fit.

[Guest guest]

Mitch, I'm sorry your in pain, and I always found that when I was on Pred. I was more emotional, way more.  My Dad's been gone for almost 23 years already, hard to believe, and my Mom lives with us, she was on her own for a very long time, took care of her mother too.  OK I'm getting side tracked sorry.

Have you ever heard of the Standard Process that Tracie is doing??  I've looked around and there are only 2 Chiropractors with in 50 mils of me that do this.  I know this sounds crazy but hate having to drive very far, especially if it's on a weekly basis.

Anyway, just curios. Yes I tried the Melatonin, and it didn't help, but I only used the dose on the bottle.  I do take Lorazapan for restless legs syndrome, or my legs just about kick my husband out of bed. It helps my sleep some too, but I was still waking up. 

Well take it easy today, hope your pain eases up for you. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)  

 

It does but before we get into complicated issues. Have you ever tried Melatonin for sleep when you take the Lyrica? Melatonin when taken correctly has to work because it is actually the hormone that makes us go to sleep. The only time I have people that don't get great results with it is when they don't follow my instructions exactly. Sometimes especially when we have people with other problems ie. cancer, Auto-immune diseases (I could go over what those are but you'd hit me  ) etc. we sometimes have to go much higher then the normal doses and we have to keep increasing until we find how much you need. If your interested in trying it. E-mail me your address and phone number to my e-mail address mjcv29a@... and I'll send you out a bottle tomorrow (on me). 

I'm not in today. I had oral surgery yesterday and am in a lot of physical pain with my mouth and I had to decrease my prednisone for the surgery so everything else hurts. It's also the 5th anniversary since my Dad passed and I keep going into crying fits which makes everything else hurt.

If you have any other questions or want to get into the headache thing further let me know. My suspicion is your getting left temporal headaches as a result of not taking the Lyrica and the easiest thing would be able to have you keep taking the Lyrica and sleeping at the same time. it gets a bit more complicated from there but i always go with the KISS principle first

Mitch

Re: Re: New Symptom

First your not Complaining, that's what we are here for to help you. 

I don't have a shunt, but I do have all the same symptoms you are describing, on the left side too.

Of course it would probably still be a good idea to get the shunt check out to make sure it's working ok,

Just yesterday my face hurt so bad, I spent most of the day lying my face left side on a

heating pad.  I have a new symptom, the top part of my lip, left side only feels numb and thick just like when the Dentist numbs you up, it works fine, but the numb feeling comes and goes by the min. it's really strange, but most of my symptoms are.

Please always feel free to ask questions.

Marla

Just one day at a time, That's all God ask of

us. for there never really is a tomorrow, as that too

is just today:)  

 

 

I have a new symptom and I have not been feeling well for a while. Wondering if this is sarc or the vp shunt. I am experiencing extremely bad headaches on the left side of my head. face, nose and eye (my shunt is on the right side). At times I get nautious and it hurts so bad that I cannot even get comfortable laying down. The headache never seems to go away and gets worse when I get excited or upset. What next man?! I am so tired of complaining and not feeling well.   

Don't be flakey. Get Yahoo! Mail for Mobile and

always stay connected to friends.

Now that's room service! Choose from over 150,000 hotels

in 45,000 destinations on Yahoo! Travel to find your fit.

[Guest guest]

I use Standard Process in my office and have for the full 23 years I've been in practice. It's very pricey, especially when your doing detox's and other specialized procedure's. I will make you the same offer I've made to any one with sarc again. I will get you the products at cost plus shipping which is about 50% off what you would pay in a Doctor's office.

I thank you for you kind words and I hope you take me up on my offer to send you a bottle of melatonin and we'll do it right and you will sleep, be able to take your Lyrica and not be tired.

mitch

Re: Re: New Symptom

First your not Complaining, that's what we are here for to help you.

I don't have a shunt, but I do have all the same symptoms you are describing, on the left side too.

Of course it would probably still be a good idea to get the shunt check out to make sure it's working ok,

Just yesterday my face hurt so bad, I spent most of the day lying my face left side on a

heating pad. I have a new symptom, the top part of my lip, left side only feels numb and thick just like when the Dentist numbs you up, it works fine, but the numb feeling comes and goes by the min. it's really strange, but most of my symptoms are.

Please always feel free to ask questions.

Marla

Just one day at a time, That's all God ask of

us. for there never really is a tomorrow, as that too

is just today:)

I have a new symptom and I have not been feeling well for a while. Wondering if this is sarc or the vp shunt. I am experiencing extremely bad headaches on the left side of my head. face, nose and eye (my shunt is on the right side). At times I get nautious and it hurts so bad that I cannot even get comfortable laying down. The headache never seems to go away and gets worse when I get excited or upset. What next man?! I am so tired of complaining and not feeling well.

Don't be flakey. Get Yahoo! Mail for Mobile and

always stay connected to friends.

Now that's room service! Choose from over 150,000 hotels

in 45,000 destinations on Yahoo! Travel to find your fit.

[Guest guest]

Do you use the Standard Process yourself, or have you tried it.  What is your opinion on Standard Process and NS?   Would it be OK to take the Melatonin and the Lorazapan, my Doctor would like to see me lower the dose of the Lorazapan?

Hope you don't mind the questions?  I don't need the answer today, unless like me when I'm lying around I take my laptop with me and watch movies and do emails:)  other wise whenever your up to it. 

MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

I use Standard Process in my office and have for the full 23 years I've been in practice. It's very pricey, especially when your doing detox's and other specialized procedure's. I will make you the same offer I've made to any one with sarc again. I will get you the products at cost plus shipping which is about 50% off what you would pay in a Doctor's office. 

I thank you for you kind words and I hope you take me up on my offer to send you a bottle of melatonin and we'll do it right and you will sleep, be able to take your Lyrica and not be tired.

mitch

Re: Re: New Symptom

First your not Complaining, that's what we are here for to help you. 

I don't have a shunt, but I do have all the same symptoms you are describing, on the left side too.

Of course it would probably still be a good idea to get the shunt check out to make sure it's working ok,

Just yesterday my face hurt so bad, I spent most of the day lying my face left side on a

heating pad.  I have a new symptom, the top part of my lip, left side only feels numb and thick just like when the Dentist numbs you up, it works fine, but the numb feeling comes and goes by the min. it's really strange, but most of my symptoms are.

Please always feel free to ask questions.

Marla

Just one day at a time, That's all God ask of

us. for there never really is a tomorrow, as that too

is just today:)  

 

 

I have a new symptom and I have not been feeling well for a while. Wondering if this is sarc or the vp shunt. I am experiencing extremely bad headaches on the left side of my head. face, nose and eye (my shunt is on the right side). At times I get nautious and it hurts so bad that I cannot even get comfortable laying down. The headache never seems to go away and gets worse when I get excited or upset. What next man?! I am so tired of complaining and not feeling well.   

Don't be flakey. Get Yahoo! Mail for Mobile and

always stay connected to friends.

Now that's room service! Choose from over 150,000 hotels

in 45,000 destinations on Yahoo! Travel to find your fit.

[Guest guest]

I have no problem with any questions from anyone in this group. As far as I'm concerned we're all kindred spirits. There are several things that can help you lower your lorazapam I'd need to know how much you take, how often and when. I have prescribed and taken standard process for 20+ years. I have not done Tracie's regime since being diagnosed because I am still on too high of a dose of prednisone and that is one medicine that is an enigma to me. I can't live without it but with it I'm fat, cranky and don't sleep. If your sarc meds are regulated I think it's worth a try.

The detox is superior to all others and I have been able to everything from get rid of kidney and gallstones in hours, lower cholesterol from 800 to normal in 6 weeks, get rid of psoriasis in a patient with it all over their body for most of their life after trying "EVERYTHING" out there and much more. I only use 6 different brands of supplements and all are the top of the line.

Standard Process is great stuff but when going from 10-60mg of prednisone daily depending on symptoms it's hard to regulate anything especially hormones.

Re: Re: New Symptom

First your not Complaining, that's what we are here for to help you.

I don't have a shunt, but I do have all the same symptoms you are describing, on the left side too.

Of course it would probably still be a good idea to get the shunt check out to make sure it's working ok,

Just yesterday my face hurt so bad, I spent most of the day lying my face left side on a

heating pad. I have a new symptom, the top part of my lip, left side only feels numb and thick just like when the Dentist numbs you up, it works fine, but the numb feeling comes and goes by the min. it's really strange, but most of my symptoms are.

Please always feel free to ask questions.

Marla

Just one day at a time, That's all God ask of

us. for there never really is a tomorrow, as that too

is just today:)

I have a new symptom and I have not been feeling well for a while. Wondering if this is sarc or the vp shunt. I am experiencing extremely bad headaches on the left side of my head. face, nose and eye (my shunt is on the right side). At times I get nautious and it hurts so bad that I cannot even get comfortable laying down. The headache never seems to go away and gets worse when I get excited or upset. What next man?! I am so tired of complaining and not feeling well.

Don't be flakey. Get Yahoo! Mail for Mobile and

always stay connected to friends.

Now that's room service! Choose from over 150,000 hotels

in 45,000 destinations on Yahoo! Travel to find your fit.

[Guest guest]

Tracie used to have great success with melatonin; don't know if she still uses

it with the new program she's on.

Re: Headaches

It does but before we get into complicated issues. Have you ever tried Melatonin

for sleep when you take the Lyrica? Melatonin when taken correctly has to work

because it is actually the hormone that makes us go to sleep. The only time I

have people that don't get great results with it is when they don't follow my

instructions exactly. Sometimes especially when we have people with other

problems ie. cancer, Auto-immune diseases (I could go over what those are but

you'd hit me ) etc. we sometimes have to go much higher then the normal

doses and we have to keep increasing until we find how much you need. If your

interested in trying it. E-mail me your address and phone number to my e-mail

address mjcv29a@... and I'll send you out a bottle tomorrow (on me).

I'm not in today. I had oral surgery yesterday and am in a lot of physical pain

with my mouth and I had to decrease my prednisone for the surgery so everything

else hurts. It's also the 5th anniversary since my Dad passed and I keep going

into crying

[Guest guest]

Thanks Mitch, Hope your mouth gets better. If you don't mind sending me the directions on how to take melatonin I would appreciate it. I can get the herbs, and I know you have expenses like the rest of us. Thanks though for the offer. And thank you Marla, I had no clue why I was having so much trouble sleeping, never connected it to my Lyrica. I take the highest dose at night. because the neuropathy gets off the chain when I lay down.. 75 mg in the morning, and 150 mg at night, and they are talking about upping it because the neuropathy is getting so out of hand. I average sleeping around 4 hrs a night, get up at 5:30 and get ready and go to work. I am so tired I just want to crawl in a hole and pull the dirt up over me. I just thought

the pain was keeping me awake. They keep wondering why I don't stop trying to work, but they don't understand; I have to have my insurance, or I can't afford to live. Hang my IVIG therapy once a month is $8,000.00 a dose. I'm terrified the insurance company is going to try and figure out a way to stop paying. Excuse the tirade, I know God has got it all in control. Thankc for everything, connie

To: Neurosarcoidosis Sent: Thu, February 17, 2011 1:07:37 PMSubject: Re: Headaches

It does but before we get into complicated issues. Have you ever tried Melatonin for sleep when you take the Lyrica? Melatonin when taken correctly has to work because it is actually the hormone that makes us go to sleep. The only time I have people that don't get great results with it is when they don't follow my instructions exactly. Sometimes especially when we have people with other problems ie. cancer, Auto-immune diseases (I could go over what those are but you'd hit me ) etc. we sometimes have to go much higher then the normal doses and we have to keep increasing until we find how much you need. If your interested in trying it. E-mail me your address and phone number to my e-mail address mjcv29a@... and I'll send you out a bottle tomorrow (on me). I'm not in today. I had oral surgery yesterday and am in a lot of physical pain with my mouth and I had to decrease my prednisone for the surgery so everything else hurts. It's also the 5th anniversary since my Dad passed and I keep going into crying fits which makes everything else hurt.

If you have any other questions or want to get into the headache thing further let me know. My suspicion is your getting left temporal headaches as a result of not taking the Lyrica and the easiest thing would be able to have you keep taking the Lyrica and sleeping at the same time. it gets a bit more complicated from there but i always go with the KISS principle first

Mitch

Re: Re: New SymptomFirst your not Complaining, that's what we are here for to help you. I don't have a shunt, but I do have all the same symptoms you are describing, on the left side too. Of course it would probably still be a good idea to get the shunt check out to make sure it's working ok, Just yesterday my face hurt so bad, I spent most of the day lying my face left side on a heating pad. I have a new symptom, the top part of my lip, left side only feels numb and thick just like when the Dentist numbs you up, it works fine, but the numb

feeling comes and goes by the min. it's really strange, but most of my symptoms are. Please always feel free to ask questions. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

I have a new symptom and I have not been feeling well for a while. Wondering if this is sarc or the vp shunt. I am experiencing extremely bad headaches on the left side of my head. face, nose and eye (my shunt is on the right side). At times I get nautious and it hurts so bad that I cannot even get comfortable laying down. The headache never seems to go away and gets worse when I get excited or upset. What next man?! I am so tired of complaining and not feeling well.

Don't be flakey. Get Yahoo! Mail for Mobile and always stay connected to friends.

Now that's room service! Choose from over 150,000 hotels in 45,000 destinations on Yahoo! Travel to find your fit.