Headaches

[Guest guest]

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 -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.

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

[Guest guest]

Thanks Connie. I've been on every medicine in the world before they knew I had sarc. i am already on Prednisone, methotrexate and plaquinil. They wanted to try Remicade but I'm still too afraid of it. Ive seen too many bad side effects and you can only be on it for a specific time. So I'm saving it for when I get really bad. Right now I just need a cane 50% of the time. Thanks for the idea. I'm down to 10mg of Pred daily until I have what I call an episode (which is between 4-8 times a year) and can last 1-6 weeks. Then I go up on the Pred, Problem is I feel like crap when I go under 10 and I feel like crap when I'm over 10.just different types of crapiness

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]

It takes a lot to offend me so don't worry about doing it. I'm a Chiropractic Orthopedist. I have to go to work but will try and remember to send you instructions on Melatonin before bedtime. If I forget..e-mail me at mjcv29a@... then I will get it on my phone if I'm not on the computer and get back to you

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,My husband was a chiropractor. He went to Palmer. He gave it up to go back to teaching because I needed good insurance. He says he doesn't miss being in business for himself: too much stress.To: Neurosarcoidosis Sent: Fri, February 18, 2011 8:26:44 AMSubject: Re: Headaches

It takes a lot to offend me so don't worry about doing it. I'm a Chiropractic Orthopedist. I have to go to work but will try and remember to send you instructions on Melatonin before bedtime. If I forget..e-mail me at mjcv29a@... then I will get it on my phone if I'm not on the computer and get back to you

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]

Connie, What about disability, then you could get Medicare to pay for the drugs, I know when I go get my Remicade, 99% of the people are on Disability and have no problem with Medicare paying for there drugs.  Just a thought.  I would love to, but husband doesn't think I should:)  We have good insurance but pay wayyyyyyyyyyyyy too much for it:)  

you shouldn't stop your Lyrica at night, maybe a lower dose, but the think is, if you stop you'll be in more pain, talk to your Dr.  I'm suppose to take it 3x a day at 100mgs each, check with your doctor and see if they can do something different, and then with the Melatonin at a higher dose suggested by Mitch, you could get some more sleep.  I know if I don't get enough sleep, then I feel yucky the whole day!  Good luck.

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:)  

 

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.

[Guest guest]

Tell me about it!! It was so much easier before the Clinton's screwed up health care

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]

How long was he in practice? Where do you live.Between the disease and the meds I can only practice Mondays and Fridays with an hour on Wed and a few on Saturday but this drains me but I can't find a good associate and I've been trying for 25 years.

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]

There are many directions yo can go when you get out and get mini specialties but there are 3 main post doctoral degree's within Chiropractic Each require your 8 years of school, doing your equivalent of a medical residency (we do it differently though) And then there big three that take an additional 400+ hours and then have to pass specific boards are Chiropractic Orthopedist, Chiropractic Neurologist ad Chiropractic Radiologist. Only a few % of DC's go for these which is why you've probably never noticed it. I never regretted going for the Orthopedist until I got Sarc and the extra knowledge in Neurology would have helped lol

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]

Connie,

Hope you feel better also. I take supplements to try and compensate for just about med I'm taking. I do prescribe a very good Adrenal supplement but I've only had to take it sporadically. i used to just use one that only contained raw dedicated adrenal gland but I stopped using that on to use one that not only replenishes the adrenals and adds others to help nourish the gland. Let me know if you want more info.

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.