Guest guest Posted April 17, 2004 Report Share Posted April 17, 2004 Madmystyx! I do know the headache thing. For me, it seems to be tied into high blood pressure. I know many here have had TIA's, as well as sarcoid meningitis. Please get in to see one of your MD's. This isn't something to mess with. Compassionately, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2004 Report Share Posted April 17, 2004 Madmystyx! I do know the headache thing. For me, it seems to be tied into high blood pressure. I know many here have had TIA's, as well as sarcoid meningitis. Please get in to see one of your MD's. This isn't something to mess with. Compassionately, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2004 Report Share Posted April 18, 2004 Madmystyx.....I suffered needlessly for months and months with terrible migraine headaches and finally went to the doctor. They also gave me megadose stuff that knocked me out. When they finally figured out it was my hgih blood pressure and gave me appropiate meds...then those massive bad headaches went away. Someone used to have to sit with me and put cold cloths on my head and hold my hand cuz the room kept movin around. And I would hear something like trains running on tracks in my head. I still get 'all over the face and neck' pain but that is sinus trouble for me. You never know what it could be unless you go in for tests. Don't hesitate to tell them what does and doesn't work for you. I didn't do anything at first cuz I thought it would pass...but it just got worse. Get in to the docs....that's an order...lol S.tiodaat@... wrote: Madmystyx!I do know the headache thing. For me, it seems to be tied into high blood pressure. I know many here have had TIA's, as well as sarcoid meningitis. Please get in to see one of your MD's. This isn't something to mess with. Compassionately,Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2004 Report Share Posted April 18, 2004 Madmystyx.....I suffered needlessly for months and months with terrible migraine headaches and finally went to the doctor. They also gave me megadose stuff that knocked me out. When they finally figured out it was my hgih blood pressure and gave me appropiate meds...then those massive bad headaches went away. Someone used to have to sit with me and put cold cloths on my head and hold my hand cuz the room kept movin around. And I would hear something like trains running on tracks in my head. I still get 'all over the face and neck' pain but that is sinus trouble for me. You never know what it could be unless you go in for tests. Don't hesitate to tell them what does and doesn't work for you. I didn't do anything at first cuz I thought it would pass...but it just got worse. Get in to the docs....that's an order...lol S.tiodaat@... wrote: Madmystyx!I do know the headache thing. For me, it seems to be tied into high blood pressure. I know many here have had TIA's, as well as sarcoid meningitis. Please get in to see one of your MD's. This isn't something to mess with. Compassionately,Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 Hey Debbie I am on neurontin 800mg 4 times a day but I hardly ever manage to get 4 doses in a day its more like 3 times a day. For some reason its too hard for me to get 4 doses a day squeezed in a day. Sure hope it helps your headaches, it has helped mine some then the doc had to add topomax too. May the Lord bless and protect you; may the Lord's face radiate with joy because of you; may he be gracious to you, show you his favor, and give you his peace........... Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 Hey Debbie I am on neurontin 800mg 4 times a day but I hardly ever manage to get 4 doses in a day its more like 3 times a day. For some reason its too hard for me to get 4 doses a day squeezed in a day. Sure hope it helps your headaches, it has helped mine some then the doc had to add topomax too. May the Lord bless and protect you; may the Lord's face radiate with joy because of you; may he be gracious to you, show you his favor, and give you his peace........... Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 Hi Madmystk, I started having headaches too after I got sick. I know what you mean. THey are burning hot headaches, they feel like your head is gonna blow off???? After months of complaining and trying different meds., my neurologist finally prescribed Neurontin and slowly pushed me up to 400mg 3x day. You can go even higher if needed on the dosage. I can't remember who else is on it. Maybe Theresa??? I still get headaches but not as bad as before. I also have Tremors or the shakes, which also got progressively worse. The neurologist put me on Primidone for those. Hope this may help, Debbiemadmystyk wrote: Hi All,I have had these terrible headaches for well over a month now. I don'tthink that they're Migraines or Sinus Headaches or allergy. I have hadmajor problems with all of them in the past. Whatever they are, theyare driving me insane! Nothing I do makes them go away completely. I'mafraid to try my Imitrex because of High blood pressure. Variousallergy pills don't work. I have quite a few big time Pain Pills, theydon't work either, other than to knock me out for awhile, then I wakeup with something like a hangover! Does anybody get these?Lately I get minor?! blackouts!! I sleepwalk at times, finding myselfdoing all kinds of weird things. I've gone through a lot with this disease and so many things are justplain scary. This is one of them! I've heard mention of TIA's andother similar things.Does anybody have any ideas on what might be going on?I wish I had my old Neuro back!!My hands, legs etc. are starting to shak more and more and I'm justrunninig out of guesses that I might want to accept.Does anyone have any Ideas?This has not been a very good couple of weeks!Of course one good thing is that I have a NEW COMPUTER! Some of myfriends, a few of who I have left, bought me a really nice BirthdayPresent. I have some things I have to work off, but it was really allgift. Just in time too, my old one just went on Death Row! I don'teven think I can rescue any files. It will take awhile for me tobecome good buddies with my new DELL, Already I have been hit withseveral Virus/worms but with the new software and extra memory I'vemanaged to leave unscathed!Thank You my Lord I needed something positive to give me some muchneeded strength and reason to keep on fighting!frankE, the "MadMystyk"pacoepi@...BTW: if anyone would like to have my phone number or would like totalk via computer (I'll need help making that work), just ask. I havebeen there before. Sometimes there is nothing like a real voice tohelp make you feel comfortable. I've been part of one support group oranother for 7 years or so and will be glad to help if I can.~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2004 Report Share Posted April 20, 2004 Hi Jan. I knew I talked to someone about the Neurontin before, just couldn't remember who......go figure....lol DebbieJaniBovi@... wrote: Hey Debbie I am on neurontin 800mg 4 times a day but I hardly ever manage to get 4 doses in a day its more like 3 times a day. For some reason its too hard for me to get 4 doses a day squeezed in a day.Sure hope it helps your headaches, it has helped mine some then the doc had to add topomax too.May the Lord bless and protect you; may the Lord's face radiate with joy because of you; may he be gracious to you, show you his favor, and give you his peace...........Jan ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2004 Report Share Posted April 20, 2004 Hi Jan. I knew I talked to someone about the Neurontin before, just couldn't remember who......go figure....lol DebbieJaniBovi@... wrote: Hey Debbie I am on neurontin 800mg 4 times a day but I hardly ever manage to get 4 doses in a day its more like 3 times a day. For some reason its too hard for me to get 4 doses a day squeezed in a day.Sure hope it helps your headaches, it has helped mine some then the doc had to add topomax too.May the Lord bless and protect you; may the Lord's face radiate with joy because of you; may he be gracious to you, show you his favor, and give you his peace...........Jan ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
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