ANA Discussion Forum
Post-Treatment => Headaches => Topic started by: Soundy on June 28, 2010, 07:26:25 am
-
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
-
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!
-
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
-
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.
-
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
-
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.
-
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 ...
-
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
-
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 ...
-
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
-
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
-
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
-
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
-
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
-
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 :D
-
Hi, Liz ~
As a non-swimmer, I'm impressed with your diving ability. A 3 story dive into water is no small feat and I applaud you for that accomplishment.
My 'recovery test' came in 2008 (2 years post-op/radiation) when we went to Disneyworld (Orlando) and I rode the infamous and challenging (mostly-in-the-dark) 'Space Mountain' roller coaster, drove the 'Test Track' ride, twice and enjoyed a few other rides. I had lots of fun - but no problems at all. That's when my wife (Tina) exclaimed: "I guess you're fully recovered, now!" I agreed and replied "it's good to be back!". In light of your recent and remarkable 30-foot dive, I think you can say the same - and I'm glad that you can. :)
Jim
-
Liz .... before I got down to your last post I was guessing repelling ...congratulations on your dive ...
I used to like repelling off stuff with Boy Scouts ...there are some cliffs over the Duck River to the north that State Park Rangers take people to repel off of ...30 -50 foot due to BSA policy of the time ... highest repel I have done was about 100 feet 20 years ago ... I liked this 20 foot gap of free fall with nothing to push off of ... gave you a sense of flying ...
I was just at a nearby boat dock on the Elk River looking at my old friend glide by thinking I really need a canoe ... could rent one every now and then but at $50 a day you might as well buy one ... if I had the money to spare ... would love to get back canoeing even though Bo frowns on it ... he won't get in the pool that is only 50 inches deep and 24 feet across ...scared to death of water and doubly of the river ... over use of right arm brings on headaches so not sure how that would go ... I would hope that it would get better over time ...may never know ... need to find a canoe buddy ... the girls have no interest and like Bo say I don't need to try
I know I over do sometimes , but I am still alive and should not have to give up things just because I have a few issues ... I do need to learn to better regulate myself ...
I just looked at calendar and I have been on neurontin since June 9th … I was told give it two weeks to fully kick in and have done so … I function well most of the time but when I crash I do it in a big way … things were all around better with Lyrica …hoping things work out and I can get back on it soon …
We were told that we may be able to get out of the BCBS contract but it didn’t happen …as a token , they did change dental coverage to a better paying policy with same premiums … but we still have the bad health coverage …
I think I will go get my teeth cleaned , get a full mouth xray series done and then get a couple fillings and a gold cap … pays 100% of fillings up to $1500 worth , one full mouth a year and 2 cleanings per year … pays 80% of a cap be it gold or stainless steel …just feel like I need to make them pay for something … don’t really think I will do so with dental visits … I don’t like dentist enough for that
-
Wow!repelling.....i did this once....in Mexico also zip lined...two months after i found out i had AN...No wonder i was so dizzy up there.Much Fun though.Over the rain forest in mexico...stayed all incusive at the Iberostar lindo..oh i would love to go back..
-
my ex husband would tell me that there was no since walking off a perfectly good cliff , but I got a kick out of it ...a rush ... I know a place about an hour away where you can sky dive ...tandem jumps ... I am seriously thinking about this for next July 2nd ... may ride up one day and watch them awhile and see if I can work up the guts to do it ... may have to wear depends just in case it is scarier than I have decided ... ;D ... and have to get headaches controled first
neurontin seems to have just stopped working ...already taking 1500 mg a day and it made things tolerable now just not working but still taking it since I was told coming off suddenly could trigger a seizure ... got a head ache Friday evening and attributed it to the fridge dying and having to run around looking and buying a new one Friday ...was stressful but ended well ...just thought like other headaches I have been getting it would go away after Tylenol but it didn't and hurt all day yesterday and ended up taking hydrocodone twice along with tylonal and wehn that didn't work , Ibuprofen ...lay down hurting last night , up at 2 to take shower , then spent most of the night either vomiting or just sitting with tears running down my face ...took my last Zofran about 7 this morning ... now just real tired ...have had a headache for around 41 hours straight with it ranging from wreck to tolerable
was on here earlier sitting eating icy pops to try to get some fluid and sugar back in me and when I tried to drink some juice it came right back up ...BG level was 60 ...the icy pops going down slower worked good and have stayed down and even managed to eat a little lunch ...thinking about floating around in the pool and ignoring family ... have hamburger soup simmering in slow cooker and when it is dinner time they can manage to get it in bowls
called my doctor's after hours service and his partner answered ... my doctor is out of town with family business and his partner would not tell me how much I could increase the dose and told me to go to ER ... he wouldn't prescribe anything different to take care of pain or another 6 pack of Zofran ... groggy and blah feeling and still nauseated ... was reading info and every place I read said do not increase neurontin with out consulting doctor ... I am so sick of this ... and his partner that is scared to treat me ... I am going to see about getting copies of my records sent to another in town doctor who will treat me when he is not available ...can't afford to just pop in and out the ER everytime his partner offers that as an option ...
-
That does not sound like a very good weekend to me...its to upsetting to have a headache that is still hanging on from the day before. Hopefully you were able to get in to see a Dr today, its obvious to me that you need some new meds and also something to have on hand when the wrecks come.....you should never have to feel stranded with no options for help especially on the weekend....
Wishing you relief,
Liz
-
Hugs to you 'soundy' - I feel your pain....had huge headache issues for years after AN surgery nine years ago. The past two years have been much more bearable and I can usually get through the day without meds. What helped me was a combination of physiotherapy (one specializing in headaches), perhaps upper cervical chiro, although not 100% sure on that one, and Vioxx but this drug was taken off the market, I believe, when some people were experiencing strokes. I had numbness off and on with Vioxx but did that stuff ever help with the headaches. To think that it was a deadly drug....
I think the challenging part about headache issues is that people seem to think that after a certain period of time has gone by, one should be ready to take on the world again. This certainly has not been the case for me and I have learned to say 'no' and not pretend that things are ok when they are not. Take care of yourself! I hope you are having a better day....
Cecile
-
I think the challenging part about headache issues is that people seem to think that after a certain period of time has gone by, one should be ready to take on the world again. This certainly has not been the case for me and I have learned to say 'no' and not pretend that things are ok when they are not. Take care of yourself! I hope you are having a better day....
Cecile
Cecile,
You have summed my headache situation to a T. It really does take a person who has "walked in our shoes" to truly understand the day to day struggles headache suffers endure. This summer has been especially brutal because of the heat, humidity and low pressure systems that of bombarded the Great Lakes area. For all of my dear friends out there I feel you pain and I truly understand.....
Anne Marie
-
Today is better ...headache finally broke around 8:00 last night and I am just very tired from fighting it all weekend ... blah feeling and tinnitus on deaf side so loud that it is making me feel like running away from myself
going in to see doctor this afternoon ... ... hopefully can figure out something ...
his partner has known me for 13 years and has treated me for other stuff but just won't take on any thing that is AN related even though he has been briefed on it ... wanted to tell him to let me drill a hole in his head and see how he felt being to just cope with it or go to ER ... the times I have landed in ER they give me Zofran by IV and IV pain killers and get me out of there when I an get up and go ... not much accomplished aside from gaining some big bills the next week
all we are doing now due to insurance is treating symptoms as they come along ...and with neurontin not even really doing that at this point ... things were going so well with lyrica ...it was my miracle for about 16 months ... hope I can get it free or reduced through Pfizer ...
I took a couple doses of Vioxx fro fibro pain back before AN surgery ... I was allergic to it and broke out head to toe and had breathing problems ... when it was recalled I figured my reaction saved me from long term damage to heart and circulatory system ... didn't take enough to know if it would have help anything
-
Was trying to read and answer this this morning but had unexpected company drop in
I think the challenging part about headache issues is that people seem to think that after a certain period of time has gone by, one should be ready to take on the world again. This certainly has not been the case for me and I have learned to say 'no' and not pretend that things are ok when they are not. Take care of yourself! I hope you are having a better day....
Cecile
Cecile,
You have summed my headache situation to a T. It really does take a person who has "walked in our shoes" to truly understand the day to day struggles headache suffers endure. This summer has been especially brutal because of the heat, humidity and low pressure systems that of bombarded the Great Lakes area. For all of my dear friends out there I feel you pain and I truly understand.....
Anne Marie
This sums me up too … most figure the AN is gone and that is the end of it … for me it was the beginning of this never ending cycle of issues …mostly the head pain … the facial twitches and numbness I can deal with they are just irritating … the pain gets me
Doctor called around town and we rounded up a little over a months worth of Lyrica and now weaning off neurontin …waiting to see how that goes … went on and started back lyica so when I am totally off neurontin the lyrica will be in place …phone consulted neuro said this should be fine … so all we did was buy me a month until we learn if Pfizer is going to help me or not … while we wait for that to come back one way or the other I’m looking for other help …
-
Soundy,
That is a little bit of good news. Think positive.....of doesn't hurt too much :P
I see the neurologist tomorrow, will report back. Today has been dreadful. I was suppose to go to my sister's for dinner, but I had to cancel. Good old headache took priority and I was in bed this afternoon for almost 3 hours. Upside hubby made home made pizza on the BBQ for dinner.
Anne Marie
-
Well I'm going to try Lyrica for my headaches and facial pain. I'm starting off with 75mg 2X's a day and weekly increasing if need be. Now I'm off to read up on the drug.
Wish me luck!
Anne Marie
-
Anne marie,
That's great, I really hope you can find relief :D
Good luck and let us know how it goes!
Liz
-
Anne Marie , hope you get as much good out of the Lyrica as I do ...
been back on lyrica since Monday and already doing better ...hoping I get to continue taking it ...will been harder to give it up a second time if it comes to that ... I did get my annual Mammogram/Pap Smear bonus check today ...we have a supplemental cancer treatment policy that we took out 15 years ago ...it pays me to get tested and scanned each year ... and those are two thing that BCBS actually pays for 100% so I get to keep it all ... $150 which I was going to put toward school clothes but thinking the girls can wait and I can put it towards Lyrica
found something else I am going to try ... today was the library's grand finale to the summer reading program ... I had a booth set up making butterflies out of coffee filters and pipe cleaners ... help kids make over 100 of them from 9 til noon ... anyway ... one of the physical therapist that work in the office Hannah did her PT on legs came by with her kids to make butterflies ... she asked me if I was ever going to come in for PT and massage as we talked about it when I was taking Hannah ... I told her no because insurance won't pay for it and I couldn't afford to ... she is doing massage on the side out of her house to make extra money ... she is going through a divorce and can't pay a sitter every day and make ends meet so is home 2 days a week and half day Saturday and works out of her home ...she gets enough hours in to keep her insurance ... she gets paid hourly at the clinic and it comes out to 8 to 12 dollars per massage at work ... plus she has to do PT and wash towels and clean toilets etc ... so she is charging $15- 30 per session depending on what area she works on and length ... she said she will cut me a deal to see if it helps me and just charge $15 per session to do neck , shoulder and scalp and after a month if it is helping she will go to $20 ...... she is fully licensed and insured so that is not an issue ... gonna give it a go ... but want to get some of the pain issues better first ... the other day when it was so bad I wouldn't have let her touch me with a 10 foot pole ... from past experience with injuries and massage , I know it can cause some pain and discomfort in the beginning ...
wish me luck ... seems like last week was so dark and this week things are falling into place for me
-
Hope the Lyrica keeps working and you get the added bonus relief from the PT and massage.
My insurence is also nul right now ....just had to meet my $400.00 deductable for the month to go to 4 appointments tomorow.Calle and got refill s on nuerontin and tramadol while my insurence is good.I wish they would cover the chiro and massage...any thing that seems to help they want you to pay your arm and leg for.so in order to have your head and neck well..you pay your arm and leg.
-
I've been on the Lyrica for 2 days now and I can honestly say I feel a difference. Late this afternoon around the dinner hour I took 2 Advil gel-caps and 1 dilaudid and just like that my headaches was gone. I hope this continues.
Soundy - Do you find the Lyrica makes you drowsy and dizzy for the first hour or two?
cin605 - Good luck with your 4 appointments tomorrow.
Anne Marie
-
Hi guys,
Lyrica is meant to bethe "updated" version of neurontin but i found that lyrica did nothing for me so stuck with neurontin which does offer a small amount of relief.
It's very individually focussed unfortunately.
laz
-
Anne Marie ....... it did make me drowsy for the first week or so when I first started taking it but over time as I got used to it , the drowsiness went away ... and the first little bit the dizziness was a bit worse but also subsided over time ...
yesterday helped my youngest build a bench for her large wood project for the fair ... I had to cut her lengths for her because the radial arm saw that she can use safely quit on us ... the chop saw is scary and dangerous due to the blade being partly open even with it's guard down and comes too close to her arm ... I made 8 cuts with it as she read her plan and marked each place ... I made all her cuts then turned her loose with the drill press which for some reason she loves :o ... (she would sit drilling holes in wood if I let her) ... I ended up in the recliner with eyes closed and a towel to block any light hurting like all get out ... I think it was the vibration ...took only 10 minutes to make cuts with her marking in between each chop I made ... all actual sawing time would have added up to maybe a minuted and a half or two minutes ...justtakes seconds to go through a 2x6 with the thing ... but it was enough to trigger a hadache ... took ibuprofen and growled at people that kept checking me and after about 2 hours took Tylenol ... another 2 hours and I was good to go ... I was fearing another 2 day headache ... this morning just hung over feeling but no headache ...
Larry .... both of these drugs seem to be "very individually focused" ...neurontin does little for me where as Lyrica does great ...
-
fully off neurontin and doing better ... no word from Pfizer yet but I am going to find some way not to come off Lyrica as long as it is working for me ... honestly thinking of naming calves Pfizer , Lyr and Ica when we sell over next few loads ... it works when we name one Hamburger or Sirloin ...magically when we have a steer with names like that big quantities of meat appear ;D ... maybe it would work for pills too ...
calves at this time of year need to be sold to pay off co-op bill for fuel and fertiliser used in hay production and any supplement feed we need for any replacement heifers we down at the barn ... with those things on the rise price wise , even though calf prices have remained steady , we barely cover costs ... but at same time I think Co-op can wait on part of their money so I can pay for some lyica...... sadly I see that unless one of the girls (or both ) can run the farm themselves or one of them marries someone that has farming in his blood , Bo will be the last one to farm this place full time ... the girls are the fourth generation on the place and it saddens ...
had first massage session yesterday with mixed results ... kinda irritating when she started but then felt better ... some places she went over on side of neck and head made it feel like someone was touching my face ...I have noticed this before ... I have a spot I can scratch and feel it on my cheek bone ... nerves are screwy I think ... felt good when she finished and went through the stretches I have been doing since shortly after surgery to keep neck from being so stiff ...
neck is still stiff and I don't have full range of motion when I turn head to put chin to left shoulder as the AN side tightens and can't get chin to touch shoulder without cheating by shrugging shoulder and lifting it to chin ...and the stretch leaning head back I can't do standing ... can do it if I first take a step forward with one foot ...if feet are together I wobble back and fear falling ...
this morning the whole side of AN side of neck and head are sore ... not what I would call a headache but just achy ... I know that sounds like a contradiction but it isn't really ...I guess better way to put it is that the inside of my head isn't hurting , the outside is ... took a hot shower and did stretches in the shower ... also let massage setting do it's thing ... I love my shower head ;D ... that has helped ... go back Tuesday ...
-
Soundy - I hope Pfizer gets back to you sooner than later.
I have started my second week on Lyrica and I am amazed I am feeling so much better. Last week I was able to really clean my house and entertain. I throw my husband a birthday party Saturday and actually enjoyed myself. I still get break through headaches, the severity and duration has lessened accept for Sunday. After everyone left early Sunday morning my head was booming, and I could not get the pain under control. I was up until 5:00 am, I woke up at 11:00 am and I was slow moving. I died yesterday and today but I got to relax around my girlfriend's pool ;D
Saturday I will increase the dosage to 150 mgs twice a day. I am hoping the dosage will alleviate the break through headaches once my body gets accustomed to it. I thought I would never, ever get relief from the headaches and facial pain but I was wrong. My husband and sons have noticed a difference in me. I still trier easily so I pace myself. I'm looking so forward to enjoying the rest of the summer and having a clean house again!
Anne Marie
-
Still no word from Pfizer and have only enough lyrica to go through the 9th ... I know that is a while off but it seems like it will be here tomorrow ...sold calves today for school clothes , house and truck insurance and co-op bill ... gonna skim from all and get at least a months worth of lyrica ... emotionally I can't stop it again ...
I like only having occasional breakthrough headaches treatable with a Tylenol , instead of the 24/7 headaches with 3 or 4 brainwrecks a week thrown in for good measure
-
Wish i had some spare for ya.
Hope your scrounging goes well.
I must say though our drug prices (neurontin and lyrica) are pretty reasonable compared to a drug that treats rare cancer and in Oz is not subsiidised by the Gov't and costs $10,000 per week. There are aren't too many people hre that have this affliction but nonetheless it puts things n perspective alittle.
I'm battling with my dosage of Neurontin at the moment. I fiond that 1200mg's per day takes the edge off the headaches and I'm still able to focus on my work. Increasing it to 1500mg makes me a little drowsy and work suffers but there is more relief from the headaches. I feel like Charlie Brown trying to kick the football and then going AAAHHHHHHHH
laz
-
I hear you Larry...still trying to get the dosage right here too...Too much....too tired.....too little and the pain sets in....arggh is right!
-
Pfizer said no ...
went school clothes shopping yesterday ... they got one T shirt each from Hot Topix that came to $31.87 .... but then made them get all the rest at JC Penney ... pants ( 3 pair each) , 1 pair of capri each , and 3 more shirts for each and each got a new backpack ... the ones they have they have had for 5 years ...we will donate the old ones that are in great shape to the school pile of backpacks and supplies for kisd that can't afford them ...took seam ripper to the patch that has their names on them and they are ready to go to pile Monday when school starts ...the packs were $30 each when I got them and that goes to show that quality pays ...I alow them one spurge each year ... this year it was the Hot Topix T shirts 5 years ago it was the back packs ... I strongly encouraged looking at clearance and sale items from the circular I got in mail ... when all was said and done their clothes and backpacks from Penney’s cost $129.47 ...with sale items , coupon that took $25 off purchase over $75 and the 15% it took $154.87 off ...with our food and gas ($45) I have about $190 left over from my calf money ...
needed to get them shoes but will do that on the 8th ... 6th thru 9th is tax free weekend sale .. I am evil and purchased the shoes already with the Penney's card I was not going to use and it took 25% off purchase ...the shoes are in the sale paper next week for $20 less a pair ... I talked to a friend that works there and she is working on the 8th ... gonna come to her checkout area and return the shoes and get that money and put it back on my card to zero out the balance ... then repurchase the shoes ... the shoes that cost me $125.09 (both pair) yesterday will cost me $54.92 next week when the 25% off total purchase if using card almost is applied and the $20 less per pair ... Will have a $54.92 bill next month which is no biggy ...
$190 LYRICA MONEY left ... YAY !!!
Gonna pay 3 months on my truck insurance instead of 6 months I usually pay and that’s another $104 … Bo has $94 left from paying Co-op left …so have almost $400 for Lyrica … gonna take a little and buy Sarah something for her birthday which is today … Bo already got her a cake and a pair of John Deere Boots … so now going to go see the doctor this morning to pick up a prescription and he also has another 14 days worth to give me …
I am having fun with this game of finding money ;D ...but just almost having fun ... would be more fun to just be able to pay for what I need ...
-
Good Lord I wrote a book :o… I have been up since about 3 because my legs and feet are hurting so bad I couldn’t sleep … get jabbery when tired … I think I am trying to keep self awake ;D… Bo took off to take girls fishing since that is what Sarah wanted to do for her birthday … Brenda don't do fishing ...catching cleaning or cooking ...just the eating part
gonna run pay insurances on the house and 2 of the 4 vehicles and then go buy me some pills … YAY!!! … gonna check into some other programs that help pay for drugs … some private foundations … but for now with doctor writing the script for more than I really take I will have about 3 and a half worth of pills …still don’t understand that te store charges by the month instead of by the pill… so 1 capsule 3 times a day costs the same as if it says take 3 capsules 3 times a day … but it helps me out s… will try to not write a book next time …
I think it may be wrong of doctor to write a prescription like that ... the dose he writes is acceptable for my weight and problems just more than I actually need ... this weighs on me ... one of the pharmsist at Walmrt is who told me that alot of patients that have problems paying have prescriptions wrote out like this for doubled doses of meds ... I love my doctor and don't want him in trouble ... I guess no one will know becasue I don't think the Pill Nazi is going to come to my door and see if I am takeing all of what is written out ...but it still worries me
gonna go lay down and try to nap until time to go to doctor at 11:30 … have a good day
-
So sorry Pfizer said no!!! Maybe we should start a letter writing campaign on your behalf. Does your Congress person or Senator help out in situations like yours?
Anne Marie
-
my husbands cousin in actually our State Representative for TN District 65 and lives about 5 miles away when he isn't in Nashville or Washington ... had never really thought of him ... sometimes I over think and sometimes I don't think enough ... may check with him after next weeks election dust settles down
-
got up with a head ache around 2 and took a Tylenol ... at 5:30 was brain wrecking ... now whole right side of face and head are numb on surface and inside skull feels like my head is ready to burst ... eyes water but it ain't like I am boo hooing and crying , my face is just leaking ... have to be to school in 30 minutes and sure am ready ...not even dressed ... did manage a shower with massage ...
have to sit at a registration table to help get new incoming students that don't know their way around school to their class rooms ... luckily we are a small school and I am handling 1st through 3rd and at that age the kids are usually good and just come along with me to start the next chapter in the grand adventure we call life ... luckily school only goes til 9 today and then I can come home take something stronger and crash in recliner ...
we will have to go in to town and get the daughter's supplies that have to be turned in tomorrow ... youngest ones teacher posted a list on school web sight ... oldest girls teacher just lost her dad 2 weeks ago and is not ready and didn't get a list posted ... she's suppose to have it today ... we can shop this afternoon when wreck lets up ... I thought I wanted school to start back but now wish we had another week of summer
-
Soundy,
Geez you do start school early down south. We don't start in CT until around labor day! My parents are in NC and my little brother (15 yea a second family type thing,I'm about to turn 30 craziness) doesn't start until the 15th or so. Well I hope the wreck let up, I had a tough day today to so I feel your "pain". Hope for tomorrow to bring a better head :)
-
wreck finally ended around 2:00 but not until it hit the cycle of vomiting aching and vomiting some more ... once it did stop I just felt wore out ...still feel blah
I have kids ranging from one who will be 32 August 25th down to youngest that turn 11 on Friday so know all about what I call my second litter and that type of family ... my little sister was born the day after my 19th birthday ... when youngest son who will be 29 (also on August 25th ) started kindergarten school started here on the 25th ...only remember the exact date because it was both his and the oldest ones b'day ...
they actually go the same amount o days as girls now do ... but the girls get a fall break in October and are off a week and they get MLK Day , Presidents day , a few more days at Christmas and a full week spring break now where as the boys used to get off Good Friday and the Thursday before ... the girls get other days off too that I can't think of and it all comes out to the same time off ... I would rather have longer summer but they say kids lose more of what they learn over longer summer than short one
-
I increased the dosage of Lyrica on Saturday and I am very tired and very dizzy. I am anxiously waiting for my body to adjust. The weather here in Southern Ontario has been very hot, steamy humid and unsettled. I've had to take the dilaudin in the late afternoon along with liquid ibuprofen. I find I just need to take the other meds once a day, rest for a bit and I'm okay.
Anne Marie
-
I looked out kitchen window at thermometer at 2:30 ... it was 102 and we had a heat advisory of 110 across the area today
been hiding in the house for most part ... been OK today ... tired yesterday ...
-
weather break and high today only going to around 95 ... bad when 95 is an only ...
I have had 4 massage sessions and kinda on the fence ... they don't seem to be helping but at same time other than discomfort at start of each session and for a little bit after each one , don't seem to be hurting either ...
I was suppose to go today for another but have a sick kid at home ... really 2 ... Sarah has something ... maybe mono maybe not ... not strep but throat sore and she is just plain gross and I will leave it there ... what ever she has I don't want it and she better be glad I like her and that I don't stick her out with the chickens ...
then 30 year old some came in about 9 last night instead of his usual midnight ... I asked if he got off early but he had been sent home sick and ended up going to ER ... pulse racing then slowing way down and shaky ...had a hard time drawing his blood because it was thick ... he is dangerously dehydrated ... they pump 2 bags of IV fluid in him and sent him home with a note that he is to have a water bottle with him at work station ... funny to be building AC units in a building that is not adequately air conditioned and they have had several this week go home with heat exhaustion and still won't let workers carry a water bottle ... hoping that they will cover the ER under Workman's comp since it was direct result of work conditions but who knows ... whiny 30 year old boy/men are worse than whiny 11 year old girls ... today I don't have time for a headache ...
-
both kids big and small are up and running ... Sarah's throat still looks real nasty but no fever and feels fine except when swallowing ... son went back in to work and did OK ...was allowed to carry water and so were others ...guess they got scared
did you know vixens in the mood sound a lot like women being murdered ??? just came in from sitting on porch staring into the darkness and listening to Loxy our friendly neighborhood fox talking to her boyfriend ... I know what it is and it still sends shivers up and down my spine ... dogs are so used to her racket that they don't even bark at her ...but the donkeys chase her if she gets in their pen while trying to sneak up on the chickens ... and she has got to go past them to get to the chickens ... donkeys make good guard animals ... they hate anything remotely canine ... so much for the ramblings of an insomniac ANer
I think alot of my head pain problems would go away if I was no sitting on my porch at 1:00 am ... just a hunch , but have not found sleep aid that knocks me our without leaving me moody , tired , hungover , nauseated etc ... for the moment my head doesn't hurt ... but being picky and want to both be pain free and asleep ...
hitting the shower with grand baby's lavender sleepy time baby wash ...
-
I must be losing it ... I don't remember writing that last post ;D ... writing in my sleep at 1:20 in the morning
have had less headache pain but more face issues with alot twitching and numb feeling ...also having problems with swallowing ...AN side doesn't seem to be pushing stuff down my throat right and I have been choking and aspirating
I did get a sneeze headache that made me start an argument with my husband ... he wasn't laughing at me really but laughed and just said something along the lines that it sounded funny to get a headache from a sneeze and he didn't under stand how it could make me hurt to the point that I wanted to lay in a dark room ... I told him to go get me a 2x4 and turn his back to me and I would show him exactly how it made me feel ... he came over and kissed my head and patted my shoulder and wisely left ... I honestly don't think I can make the man mad ... or he hides it real well ... don't want to make him mad but I have said some mean things to him that I don't really mean but in times of pain or frustration they come out ...things that would probably make me mad if someone said them to me
like my dad used to tell us ... I let " my A** get ahead of my mouth " ...in other words speaking before thinking ...
with kyrica back in my daily routine things are better ... now spend spare time worrying about where money for next bottle will come from
due to money have not had anymore massage ...ouldn't tell they were helping ...not hurting anything just not helping
-
So glad you got the Lyrica back and love the 2 by 4 ... We have to try to keep our sense of humor it does help at times.
Best Wishes,
Pat
-
Exactly, because if we don't laugh (which has been known to hurt too) then we cry!
liz
-
I've been feeling better over since I've been on the Lyrica. Last week was tough because of the weather, yesterday almost did me in, but today it is cooler and my head feels pretty good. I took two extra strength liquid ibuprofen just before dinner for a dull headache and it was gone before I sat down to eat. I too have been having a lot of facial twitches, pulls and some pain the last few days. I was in my family doctor's office this afternoon and he actually saw what my face can do. He was speechless for a moment than asked what it felt like. I told him I feel like someone is trying to rip my face off, or imagine a wide rubber band attached to the tip of your nose, and sewn tightly up your cheek and there is a piece of this band sticking out. Now imagine someone is using all of their might to pull that piece that is sticking out, that pretty well sums up what I feel. He just looked at me smiling and shaking his head. I can handle pain, if it is only one pain but when all of the facial and head pain is partying, it does me in and I'm the one left with the hangover.
Anne Marie
-
doing better as far as headaches ... when I first went on Lyrica the leg and foot pain from fibro went away except for left hip ... when I had to stop it the fibro pain came back ... now back on the Lyrica and it has not left with the head pain ... doctor upped dose so now the over-written prescription that gave me extra pills may end up being my dose ...so when dose is upped to point leg pain goes away I will be back to not being able to pay for it monthly ... can't win for losing.
Ray of hope ... Pfizer emailed me and asked if Bo had gotten a raise during past 12 months ... he did ... the first in 3 years ... bad management and a lying manager of the electric system that claimed the company was losing money and there would be no annual cost of living raise ... he was spending money hand over fist and it was not there ... new management gave everyone their raises for past 3 years ...wish they had given them retro pay for money lost through not having their raises ... anyway ... called Pfizer and the woman I talked to said that I could resubmit application using 2009 W-2 form and probably get Lyrica through December ... so got that off Monday and hoping for the best.
I am so tired of the juggling just to be comfortable.
Soundy~ I fixed the typo. J.S.
-
(Soundy~ I fixed the typo. J.S.) ... Thanks ... I hope it wasn't a bad one ... I have had to edit posts due to bad ones ;D
Great news ... yesterday Fed Ex man delivered a 3 months supply of Lyrica .... the package didn't have Pfizer's Name on outside and it rattled so he wanted me to open it in front of him to make sure what ever was in it was no broken ... when I saw what it was I wanted to hug and kiss him but didn't think he would understand so settled for a little squeal of joy ...
at last check at pharmacy ( I keep asking because they keep saying Lyrica is coming down ... not ) this bottle would cost me $840 ... before filling it they contacted the doctor to see if I was still in need of it and he resubmitted his part at new higher dose... this present from Pfizer will carry me into January with what I already have ... Will have to resubmit renewal forms in December to stay on program and since they will now be going by what husband makes now and not what he made last year I may lose it ... but that also gives me some time to put back some money if I can find extra ( ha ha ha , like there is such a thing as extra money) so I can refill when I run out
with lyrica dose adjusted up my legs still get achy but not as bad ... head only hurts when I sneeze , cough or make sudden fast moves ... face still numb feeling and a bit twitchy , especially when I am tired , but over all much better back on lyrica ... still get very tired and take long naps if no one is around to wake me up ... have phone alarms set at various times to wake me so I don't sit down to read and wake up 4 hours later ... just so happy that both head pain and fibro pain are under control right now and can function more normally ... and all with one prescription ...
-
Soundy,
Great news, and hopefully you continue to get the meds from Pfizer.
Liz
-
My doc took me off Lyrica two weeks ago because I was still getting headaches and no sleep from it. Now I am on Lithium. I have a full bottle of Lyrica and one of Verapamil and Topamax. I have a small fortune in drugs that my doc has taken me off .
-
Very good news Soundy. It is amazing how expensive the drug is. My last refill was 400 pills and it would have cost me $746.00, because I have a decent drug plan it only cost me $3.00. I'm taking 225 mg twice a day. I can relate to the tiredness especially on cold rainy days like today. I feel there isn't a drug invented that will take away all of my pain, but I am better on the Lyrica than I am off of it.
Mei Mei,
How long were you on Lyrica? From what I understand you have to gradually increase the dosage and when coming off of it you also must decrease it gradually. My neurologist said I had to give Lyrica at least three months to see if I benefitted from it. I still get headaches and I have facial pain all the time, I also have heavy duty meds for the really bad break through headaches. Sunday was a terrible day for me and I was so grateful to have the medication for break through pain.
Anne Marie
-
I was on Lyrica for only a few weeks. Coming off of it was terrible even though my doctor said it wouldn't because my dose wasn't high enough. I was trembling and still am, but I don't know if that was from coming off of it or that I am getting nervous from the Lithium that I just started. I do know that because of all these drugs and coming off the Topamax I haven't been sleeping till 4 or 5 am and have been surviving on little sleep. Yesterday I was wanting to crawl out of my skin and almost suicidal but not that far just very very anxious and nervous. I've been changing so many drugs and am getting very desperate.
Take care,
Mei Mei
-
Maybe you should get a second opinion. I know lithium is a heavy duty drug used for manic depression. Good luck with it.
Anne Marie
-
Hang in there, Mei Mei. Going on and off all those drugs has to be doing a number on your system. The self-hypnosis I learned from Dr. Novello was a real help to me because it forced me to focus on something other than my pain. It didn't stop the pain for me, but I know that I experience the pain more when I am tired or anxious. You might want to think about contacting him, or joining a pain management support group. I know there is one in the DC area. And think about Anne Marie's suggestion. You need to find a doc who understands pain and can help you manage this.
staypoz
-
Yes, I know and that's why I didn't want to start it. It concerns me very much. I will work on the second opinion. Very little sleep again.
Thanks for your concern.
Mei Mei
-
Mei Mei, here's a link to the Pain Connection. There's a meeting tomorrow and they seem to have a lot of resources. Maybe someone there could suggest a different doc.
http://www.painconnection.org
staypoz
-
Mei Mei I looked at the link to the pain connection seems like a great option for you. Time for you to get that relief!
Liz
-
Hi Tricia and Liz,
I just called the anesthesiologist and he will fax another order to the neurologist. It seems the fax on August 12th for my medical records got lost so they never sent the records. I heard he's a good doctor. Will now check out the pain support group. Just got over another headache about a half hour ago. It was so bad that I got into the tub with bath salts and an ice pack. It comes on suddenly and then I have to work on it to go away.
Take care,
Mei Mei
-
Mei Mei,
Glad you followed up and learned the records hadn't been sent. Hope the meeting is worthwhile!
staypoz
-
Mei Mei,
Sounds like my struggles with a new pain management group. They've been waiting on my file to be complete so they can review it and see if I am a candidate for their treatment. Its been weeks and I've called several times. Frustrating to say the least!
Thank God you kicked your last headache, mine don't generally go away unless I go to bed...
Liz
-
That's interesting, Liz. Mine get worse in bed and I have to get up and take a tub bath with this green powder stuff I got at Whole Foods. My hands are still trembling and my legs shake. I just want to manage without medicine. Had another headache this morning when I went to the post office. Had to stop and take some Alleve. I get really down more than ever before in my life.
I hope you get to see the Pain Management Group. I'm still waiting to hear.
Take care,
Mei Mei
-
Just got a phone call from the anesthiologist's office (Pain Managemn ent Clinic) and they do not want to make an appointment for me. They feel I am not appropriate for their office. I was really hoping they would take me. They said they don't think Botox will work for me.
Am really down about this, am also trembling from the Lithium and BP is up to 138/90. Am upstairs lying down.
Mei Mei
-
Hi, Mei Mei. If you need to lie down or take a bath or put an ice pack on your head, that's what you should do to take care of yourself.
As you know from reading the posts here, many of us have had to try different doctors and different approaches to find relief. Maybe someone at the Hopkins pain or headache clinic could help? At one time, I even thought about going to see one of the doctors who spoke about post-surgical headaches at the AN conference. Keep looking!!
staypoz
-
The neurologist called and told me to go off the Lithium for one day and then restart by cutting the pill in half: Half in the morning and half at night.
Will keep looking. I was disappointed that the Dr. refused to take me as a patient because he does Botox shots.
Mei Mei
-
Call the Drs office that did your surgery and tell them you want a referal to a pain manangement center to recieve Botox injections for the massive migrains......they can not refuse you if you have areferal to thier office for a specific proceedure your Dr.orders.
-
OK, I'll do that tomorrow. My hands are trembling from the L. medicine I'm taking now and I feel like crawling out of my skin while I'm in bed. I hate what this does to me. The neurologist called me back today and told me to stop it for one day and then cut in half on Saturday. This is like a nightmare that never ends.
I was feeling a lone today and then realized I have the Forum. Just wish we all lived near each other.
Mei Mei
-
Mei Mei.... you know I'm watching out for you and sooooo sorry to hear that you are enduring this. I'm on week 5 of a massive migraine (due to non-AN issues) and like you, trying to reach out everywhere to get relief. My docs have tried a few meds here and there and not sure if the right combo has been found for me, BUT, I'm thrilled that you are getting wonderful suggetions and support here.. .and that you are doing all you can to stay strong through this. I know it bites to try to handle side affects (been having them myself as well lately and like you, the "creepy crawlies" are driving me crazy) and hope that things calm down.
I have found that meditation during the rises of symptoms/migraines/side affects helps me. I get in a comfortable position (try what works best for you if lying down isn't helping).... close my eyes, focus on my breathing...I "listen" to my breathing and for me, it does help alleviate some of the issues.
I wish I could take away your pain... I really do. Know that we are looking out for you. We're here for you. You know your "family" here on the forums want you well and to happen very quick.
Hang tough, m'dear. You know my inbox is always open.
Phyl
-
That feels so good that you wrote all this. I am so comforted. My hands are still trembling and this is my first day off the med that starts with an L... I can't remember the name right now. Will be in touch as I am having a headache right now and should log off.
Thanks again...Hugs,
Mei Mei
-
Mei Mei, Phyl's suggestion about meditation is a good one. It's similar to the self-hypnosis that Dr. Novello taught me. It's another tool in my pain management toolbox. You should really think about calling him because he does a lot of work with people who have pain issues.
You have lots of support from those of us on the forum and among the local support group.
staypoz
-
Mei Mei,
I agree with Phyl, deep breathing is crucial because when in pain we all have a tendency to breath sallowly. I also find I need to use heat at the back of my head and along my face and cold across my forehead.
I struggle daily with headaches and facial pain. Today isn't too great, but I can function around the house, I think! I may need a nap and so be it. I feel for you Mei Mei because the pain that we feel is difficult to treat. I can't offer you anymore advice because of my struggles continue also.
Hang in there my friend,
Anne Marie
-
Thanks for the support and advice Anne Marie. I called my surgeon today for a referral to a pain clinic and they gave me the number of the Hopkins Headache Clinic. I now have an appt for next Thursday.
I use heat when I first wake up in the morning and ice on my forehead and neck when the pain is really bad. Sometimes it is so bad I can't take the ice and I just lay there and take Tylenol in addition to the Alleve.
Will do the deep breaths and think you you all on the Forum.
Hugs,
Mei Mei