Headaches on neurontin ... help with lyrica ..I hope

[Soundy]

I am doing OK on neurontin but did better on lyrica …have had more break through headaches since starting it … the past week has been crazy with Day Camp and then Saturday night had Relay and walked 10 plus miles throughout the 12 hour period I was there … unlike lyrica , neurontin does nothing for fibro pain which wears me out …once I really start hurting , I think I get in a cycle of aching all over and ending up with a brain wreck …

also got over heated loading up camp stuff Friday and it trigger a monster headache  …when I got home I took a hydrocodone because Tylenol hadn’t worked … I lay down with a headache and fell asleep tumbling and evidently according to witnesses ( hubby and kids ) talking in my sleep about doctors , hitting people and ice-cream  :o… I deny this part because it makes no sense , but they claim it as a fact …

slept from around 5 and got up after midnight with a full blown train wreck … I at in hot shower throwing up and holding head … Bo wanted to pack me off to ER but I refused … got him to bring me another hydro and a xanex along with Dr Pepper and drank it in the shower … the massage feature on my shower head aimed at the AN side of neck and head along with medicine eventually broke the cycle … went to bed around 2 still wrecking … my husband kept touching my face and talking to me like you would a baby …he aid I was crying something I deny …my face was just leaking …thinking about moving sent sharp pains through my head … I got up around 10 or 11 and was good to go …

Got through Saturday and at 4:30 was at the fair grounds ready to take part in Relay for Life … and did in a lot bigger way than I ever imagined I could walking 10 plus miles … headache started around midnight and took Tylenol and an extra neurontin and carried on … hit a point somewhere around 3AM where endorphins kicked in and pain was pushed back and I walked …

Slept most of the day yesterday getting up to eat and wash a load of clothes and walk around to keep from getting too stiff … have a slight but not bad headache this morning … The AN side of my face is very numb and tingly feeling … and right eye very twitchy …and metal mouth taste is at a high … but with all that glad I accomplished something I sat out to do without falling over …

That said , I still want to get back on lyrica … I printed a form from Pfizer , and filled out my part … I am taking it to my PCP to fill out his part and hope that they will help me out with lyrica … we are way below the income cut off but since we have insurance that covers some drugs I have to qualify under hardship … hoping the $9000 under their poverty line and the fact my insurance won’t pay on lyrica , that they will help …keeping fingers crossed …

Here is the form for anyone needing lyrica and unable to afford it  …

http://www.pfizerhelpfulanswers.com/files/C2C_ENGLISH.PDF

go to Pfizer website for all the details


http://www.pfizerhelpfulanswers.com/pages/Programs/programdetails.aspx?p=2

[cin605]

My Dr. wanted me on Lyrica went to fill script 250.00 for 30..OUCH....NO.....now i am trying neurontin....much relief but still getting spasms.Less pain...its dull not electrifying.
Down side i can not sleep.Fall asleep 1am up at 3am ..argh
Sorry to hear of your brain wrecks hope you get Lyrica soon!

[Soundy]

I filled lyrica twice while on it and my doctor kept me in it with samples ..also  got a big bottle from a friend who had a daughter was put on it and given samples until she got a 3 month supply in the mail ... she had ordered it and then her daughter couldn't tolerate lyrica ... she sent the factory sealed bottle to my doctor and he passed it on to me ... so was lucky for that year and 4 month I was taking it ...

I just can't afford it and my insurance doesn't think it is a necessity ... so the $40 a month neurontin is gonna have to do for time being ...hoping I can get on this program and get back on it

[cin605]

I am having serious sleep issues w/ neurontin.....go sleep at 11pm wake at 2 or 3 am and can not go back to sleep.
Its so annoying.....i tried stayin up till 1am the the other night and still woke at 4 am....my eyeballs are stinging.ARGHHH!!
I do not want to stop taking it becouse pain is minimal now.

[Soundy]

that is how I sleep on lyrica and neurontin and when I was taking nothing at all ... sleeping pill combos I have tried make me foggy the next morning ... I have adjusted to being awake at night when I should be sleeping and catch naps during the day when I should be awake

[cin605]

I am going to try to adjust to this crazy sleep pattern....up at 3am again.....Thats after taking an attivan before bed and cutting my afternoon dose of gabepenton out.

[Soundy]

have paper work in and hope to here back from Pfizer soon ... they say it takes 2 to 3 weeks ...

in the time being I will continue neurontin and treat breakthrough wrecks ... we went to fire work show last night and were far enough away that I didn't get the big booms , so didn't get a headache ...but we got home around midnight and after a shower I fell right asleep ... woke up with a wreck about 3 this morning ... took half a hydrocodone and got in shower and let hot water massage thump it away ... I need a shower chair like they use in the nursing home ...

I am having more facial twitches than when on lyrica and my eye on AN side is not closing all the way when I fall asleep ... wake up with it dried out and have to goop it ...usually just have to put in drops ... I guess I am going to have to start patching again like I did right after surgery ...

[cin605]

My dr. called in amnitrypline....its helping w/ the sleep....i am having the facial spasms also.
Two weeks tils l MRI. hearing test/neaurosurgeon and ent appointments.
Dartmouth is 3 hours from me.My sis will be driving.loooong day it will be...
Hope your feeling better.
Cindy

[Soundy]

I am not sure if the added head pain causes more twitches and facial symptoms 

or

if the added facial symptoms cause headaches

I am thinking the first since the facial increased when headaches increased ...seem like I am caught in a looped cycle and can't get off ...
got some extra money from a surprising source and was going to pay down on bills to Vanderbilt on Hannah's leg braces and
PT ... but thinking that I should go get a months worth of Lyrica and hope the program comes through for me ...

[Lizard]

I'm so sorry you're still struggling with head pain.  breaking that pain cycle is the hardest thing I've ever been through.  I'm not 100% but I'm functioning at a much higher level.  I told my husband yesterday right before I jumped off a 30 foot cliff that I finally felt human again. (paid for the jump last night, but totally worth it)

I wish you the same peace that comes with fewer headaches, and don't give up! 

Hang in there,
Liz

[Jim Scott]

Liz ~

Having had the pleasure of meeting you and your husband last October at the ANA brunch in Worcester, Massachusetts I can assure everyone that you're quite human. 

I'm glad you survived the 30-foot (bungee?) jump and that you're feeling better and, well, more 'human'.   Your advice for Soundy is astute because, I know, its based on experience.  Thanks .

Jim

[yardtick]

Soundy,

For me the facial pain and twitches aggravate the headaches.  A headache alone is enough to make me take the meds, rest for a bit and than I can continue on with housework, laundry or preparing dinner.  When I have the facial stuff going on, my head becomes unbearable, the meds are useless and I need my bed, blinds closed, lots of water, deep breathing and lying very, very still.  I had two full days in a row last week in my bed and yesterday afternoon I was on the couch in the family room because it was cooler there than my bedroom.   

Some days Soundy I wonder why I even got out of bed.  I haven't tried Lyrica yet but it is on my list to discuss when I see the neurologist July 15.

Hang in there, and I really do feel your pain,
Anne Marie

[thisisajourney]

I am doing OK on neurontin but did better on lyrica …have had more break through headaches since starting it … the past week has been crazy with Day Camp and then Saturday night had Relay and walked 10 plus miles throughout the 12 hour period I was there … unlike lyrica , neurontin does nothing for fibro pain which wears me out …once I really start hurting , I think I get in a cycle of aching all over and ending up with a brain wreck …

also got over heated loading up camp stuff Friday and it trigger a monster headache  …when I got home I took a hydrocodone because Tylenol hadn’t worked … I lay down with a headache and fell asleep tumbling and evidently according to witnesses ( hubby and kids ) talking in my sleep about doctors , hitting people and ice-cream  :o… I deny this part because it makes no sense , but they claim it as a fact …

slept from around 5 and got up after midnight with a full blown train wreck … I at in hot shower throwing up and holding head … Bo wanted to pack me off to ER but I refused … got him to bring me another hydro and a xanex along with Dr Pepper and drank it in the shower … the massage feature on my shower head aimed at the AN side of neck and head along with medicine eventually broke the cycle … went to bed around 2 still wrecking … my husband kept touching my face and talking to me like you would a baby …he aid I was crying something I deny …my face was just leaking …thinking about moving sent sharp pains through my head … I got up around 10 or 11 and was good to go …

Got through Saturday and at 4:30 was at the fair grounds ready to take part in Relay for Life … and did in a lot bigger way than I ever imagined I could walking 10 plus miles … headache started around midnight and took Tylenol and an extra neurontin and carried on … hit a point somewhere around 3AM where endorphins kicked in and pain was pushed back and I walked …

Slept most of the day yesterday getting up to eat and wash a load of clothes and walk around to keep from getting too stiff … have a slight but not bad headache this morning … The AN side of my face is very numb and tingly feeling … and right eye very twitchy …and metal mouth taste is at a high … but with all that glad I accomplished something I sat out to do without falling over …

That said , I still want to get back on lyrica … I printed a form from Pfizer , and filled out my part … I am taking it to my PCP to fill out his part and hope that they will help me out with lyrica … we are way below the income cut off but since we have insurance that covers some drugs I have to qualify under hardship … hoping the $9000 under their poverty line and the fact my insurance won’t pay on lyrica , that they will help …keeping fingers crossed …

Here is the form for anyone needing lyrica and unable to afford it  …

http://www.pfizerhelpfulanswers.com/files/C2C_ENGLISH.PDF

go to Pfizer website for all the details


http://www.pfizerhelpfulanswers.com/pages/Programs/programdetails.aspx?p=2

[ppearl214]

Have been off and on Neurontin/Gabapentin for years. Back on it now (low dose as I cannot tolerate higher doses).  Also tried Lyrica and had severe side affects from it (I am prone to meds side affects and Lyrica got me bad).  So, back on Neurontin.  I also have sleep disruption from it.  Take nightime dose, knocks me right out, awake at 2:30am.  I know Lyrica is a pain (sorry for the pun!) for insurance. Got my dr to write my insurance company for "necessity" and that did the trick. Here's hoping you get access to it if its going to help the cause!  Hang in there!

Phyl

[Lizard]

Liz ~

Having had the pleasure of meeting you and your husband last October at the ANA brunch in Worcester, Massachusetts I can assure everyone that you're quite human. 

I'm glad you survived the 30-foot (bungee?) jump and that you're feeling better and, well, more 'human'.   Your advice for Soundy is astute because, I know, its based on experience.  Thanks .

Jim

Thanks Jim, and the jump was into a really deep lake.  I used to dive in high school and its such a rush