headaches

[Guest guest]

Mitch (that's my brother's name by the way- White, we call him Mitch) If I'm not being too nosey, what do you practice. If I am being too nosey, just reply "none ya" I won't get offended. I'm just curious. connie

To: Neurosarcoidosis Sent: Thu, February 17, 2011 1:39:33 PMSubject: Re: Headaches

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 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]

Mitch I was able to reduce my pred (i'm on 10mg a day) by using Chlorloquine (it is an anti malaria drug, I'm allergic to methotrexate, and the sulfa drug in plaquenil and immuran) My pulmonologist called a sarcoid specialist in land and he suggested it. You can also take cholchicine for the joint problems. Unless your like I am, I can't take that either. My doctors just love how weird my body is about medicine, in the area of medicines I can tolerate, I'm about as much fun as rabies.

To: Neurosarcoidosis Sent: Thu, February 17, 2011 2:07:10 PMSubject: Re: Headaches

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 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]

I also can not go below 10. I feel nauseous all the time, and feel like dirt. Found out that I had taken pred too long and my adrenal gland won't start back like it should anymore. This according to my pulmonologist and my blood work is why I can't go any lower. I'm glad you can take plaquenil and methotrexate. They tried plaquenil with me and it was amazing, the only problem was my throat would start swelling up, and I'd start wheezing. I even asked the pharmacist couldn't I take benadryl and still take it. He told me "don't you ever take that again". I guess not then. You should ask some of the people here about the Remicade. I don't know anything about it but quite a few in the group use it. Hope you feel

better.

To: Neurosarcoidosis Sent: Fri, February 18, 2011 8:21:10 AMSubject: Re: Headaches

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 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]

Chiropractic Orthopedist...The combination makes alot of sense. It would seem you would have a better understanding of the total picture. The bone is never without the muscle, and the muscle is never without the bone. I read and analyze a massive amount of medical records, but I have never seen a Chiropractic Orthopedist.

I really appreciate it you taking the time to send me the directions, between the lack of sleep, the pain, and work I feel like I'm fracturing. I don't take pain medications, and can only take small amounts of antiinflammatory. I'd be lying if I said I didn't miss the higher doses of prednisone and the relief it offers. But the price in side effects and damage is too costly.

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 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]

Thanks for thinking of me Marla. I know you have so much on your plate.

They have got to figure something out soon, I am having alot of trouble walking, and I feel literally like someone has taken a 1x2 and beat me with it from head to toe. I know most everyone on here feels the same way. I honestly feel like I shouldn't say anything to anyone, but sometimes I just need to let it out.

Thanks for your kindness, c

To: Neurosarcoidosis Sent: Fri, February 18, 2011 2:27:09 PMSubject: Re: Headaches

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]

Because, we so many of our going through this, this is the right place for you to let it all out:) Were here for you always.  I have trouble walking too, but I just keep pushing myself. my doctor said if you don't use it you will lose it, so I do what I can.

Hang in there and keep on doing what you can. 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 for thinking of me Marla.  I know you have so much on your plate. 

 

They have got to figure something out soon, I am having alot of trouble walking, and I feel literally like someone has taken a 1x2 and beat me with it from head to toe.  I know most everyone on here feels the same way.  I honestly feel like I shouldn't say anything to anyone, but sometimes I just need to let it out. 

 

Thanks for your kindness, c

To: Neurosarcoidosis

Sent: Fri, February 18, 2011 2:27:09 PMSubject: Re: Headaches 

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 PM

Subject: 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.   

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[Guest guest]

That is very interesting, I like to learn new things (even if at times I can't remember them). At times in my job we garner more information from the DC's, with more detailed notes; than the plain orthopedist. The more we know, the better decision we make.

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.