RE: Re: New Symptom

February 11, 2011

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 -0700Subject: 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. 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.

February 11, 2011

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 -0700Subject: 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.

February 13, 2011

Have either of you ever been checked out for trigeminal neuralgia? The pain can be so fierce on the side of the head and into the face that it has a horrible nickname. It is treatable though.

To: Neurosarcoidosis Sent: Fri, February 11, 2011 4:01:27 PMSubject: 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. 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.

February 13, 2011

No I have never heard of this. I will definitely ask about it when I call the dr. Thank you. How is it treated? I have had this dang headache for a week now and nothing seems to take it away. It dulls for a while and then comes back when I get excited, upset or tired.

To: Neurosarcoidosis Sent: Sun, February 13, 2011 5:10:37 PMSubject: Re: Re: New Symptom

Have either of you ever been checked out for trigeminal neuralgia? The pain can be so fierce on the side of the head and into the face that it has a horrible nickname. It is treatable though.

To: Neurosarcoidosis Sent: Fri, February 11, 2011 4:01:27 PMSubject: 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. 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.

We won't tell. Get more on shows you hate to love(and love to hate): Yahoo! TV's Guilty Pleasures list.

February 14, 2011

Hey LaI've heard of this and pretty much that what I have, I believe there are others that have it too. I don't find there's much that helps with that, though. I do believe it was worse before I started taking Lyrica. It works the same with me, worse if I'm tired or upset, or it's cold, etc..

I have a new symptom with this took, now the left upper lip feels like it is swelling, and the swelling goes up and down, but it's not, kind of like a shot from the dentist, not really painful at the lip, but when it feels like it's swollen, it sends some " sparks I call them " up into my cheek.

not much else they can do about 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:)

No I have never heard of this. I will definitely ask about it when I call the dr. Thank you. How is it treated? I have had this dang headache for a week now and nothing seems to take it away. It dulls for a while and then comes back when I get excited, upset or tired.

To: Neurosarcoidosis

Sent: Sun, February 13, 2011 5:10:37 PMSubject: Re: Re: New Symptom

Have either of you ever been checked out for trigeminal neuralgia? The pain can be so fierce on the side of the head and into the face that it has a horrible nickname. It is treatable though.

To: Neurosarcoidosis

Sent: Fri, February 11, 2011 4:01:27 PMSubject: 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. 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.

We won't tell. Get more on shows you hate to love(and love to hate): Yahoo! TV's Guilty Pleasures list.

February 14, 2011

Stacie, I would have to say it's part of the Sarc, only because I have all the same symptoms, all on the L side of my face too, my left eye waters almost all the time, I will find food and drinks will leak out of the left side of my face, it's numb, and has I guess that pulling feeling, it feels as though it's hanging I would say. I think it's treated the same as all my NS symptoms are, Lyrica for the nerve pain, and meds to manage the NS, such as the Plaqunil, Methotrexate, and Remicade.

My face always feels numb, as for the pain it varies with sleep, cold, emotions. I'm sorry you have it, it's no fun for sure, I take Nortriptyline for my head pain, so I guess that could be included in the treatment of my face?

Hope you find some answers. 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 am interested in how this is treated as well. I have a friend with it that is not getting relief. I have similar issues on my left side and figured it was migraines which at times in my life I have had daily for extended periods of time. At least that was what I was TOLD was happening. How is it checked? I also have recurrent numbness and a heavy pulling sensation on the left side of my face and left eye pain and a drooping of my left eye lid that comes and goes, is this part of it as well?

Stacie

February 17, 2011

I'm sorry for not answering sooner Latonya. I just saw the email today. The neurologist treats mine with Lyrica. I didn't know what was wrong, I would have what felt like lightening shooting through my head, and then I would have headaches where most of the pain was on the right side of my head. When I showed him where the pain was I put my hand above my ear with the fingers spread and wrapped it from the ear across the side of my face all the way to the eye. He immediately told me he thought it was trigeminal neuralgia. With the fact that granulomas love nerves, it makes sense. Something as mundane as a breeze blowing on you face can set it off. Sometimes there is no warning, you just suddenly have a headache. If you look it up, the

problem occurs when something causes the nerve to brush up against a vessel. If you pull up the info it will explain it better. Again, I apologize for not answering sooner. Connie

To: Neurosarcoidosis Sent: Sun, February 13, 2011 10:00:46 PMSubject: Re: Re: New Symptom