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

[Jim Scott]

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

[Soundy]

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 

[cin605]

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..

[Soundy]

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 ... ... 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 ...

[Lizard]

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

[cecile k]

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

[yardtick]

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

[Soundy]

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

[Soundy]

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 …

[yardtick]

Soundy,

That is a little bit of good news.  Think positive.....of doesn't hurt too much 

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

[yardtick]

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

[Lizard]

Anne marie,
That's great, I really hope you can find relief 
Good luck and let us know how it goes!
Liz

[Soundy]

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

[cin605]

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.

[yardtick]

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