Author Topic: Headaches and Lyrica and Side Effects  (Read 21454 times)

Soundy

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Headaches and Lyrica and Side Effects
« on: January 03, 2010, 01:57:25 pm »
I have been on Lyrica for a year now and have only used about 40 hydrocodone caplets for severe pain in this time ,  compared 25 -30 a month before starting on it ...

dosage was upped in when I started having breakthrough head aches ... right now things are good as far as headaches go ... I do get occasional headaches that Tylonal wipes out ...

I have been developing OCD like symptoms over last few months that are agravating but I can tolorate ... but they bother my doctor ...

examples ....

I can't program my microwave to run the 35 seconds called for ...I punch in 37 or 33 ... and not just 35 ...anything called for I add or subtract a second or 2 so it doesn't end in 0 or 5 ... a minute and a half may become a minute and 33 seconds ... or  1 minutes and 28 seconds ...just never 5 or 0 ... or punch in seconds and it would be 98 seconds


they started painting the halls at school from floor to shoulder height a blue/gray instead of white ...shows fewer finger prints  ... the janitors are doing it in evenings when they have nothing at home to do ... they will roll a section and come back a night ot two later and do more ... when each hall is painted from shoulder down by rolling there is an inch or so wide stripe of white at floor that they go back and cut in later ... it really makes me worried and bothered ...I avoid the unfinished halls and when I do have to go down them look kinda up and off to side to avoid seeing the stripe... I offered to stay with them when they paint and crawl along behind them doing the floor cut in so it would all be done at once ... they said that was OK they would get it in time ...should have told Neal that it was making me insane and I really needed to help him do it ...

we re-did the kitchen island and I love my new improved big  (5' x 8' ) kitchen island ...mor cabinets and drawers all right at hand ...makes kitchen more usable ...but now light is not centered over it ... could scoot island toward sink wall and center it but then only have 2 feet between it and sink and not even my 10 year old would fit in there to work  ... I want to move the light which would be easy to do ... but would leave a patch in ceiling that would bug me ... so would have to pull down 4x8 section of textured ceiling board and replace it and cross pieces that cover seams ... and paint it ... or could change the light to a smaller one and add a smaller matching on to this end and they would be centered ... but then they wouldn't match the fan/light over dining table in th dining room and it would have to be changed ... already checked and can't find smaller ones that match the existing fan/light fixture ...and I like my husband ,  and so just try not to look up at light ...when I win the lottery I will have someone come in and do it in a day and Bo will come home to new lights and a less crazy wife

I had not told the doctor about this becasue I just didn't ...but when I was there for annual , the room I was in had a tile that had been replaced due to damage ... I had pushed a chair over so I didn't have to see it ...when he had me get on table I could see it out of corner of my eye ... I kept glancing at it and he finally asked what I was looking at ... and I told him the tile was bugging me and made me uneasy ... then told why and told him of the numurous other little piddly things that are driving me insane ... when it is something I can fix and go I am OK ... but I obsess over the others I have no control over or can't easily fix

all these things are silly and my rational mind knows that ... it is the little off kilter bit that says the white strip of paint at bottom of wall is a huge problem that I worry about

My doctor thinks that the lyrica may be causing this ... and suggested coming off it ... I told him I could deal with the little silly things that make me uneasy better than going back to the daily headaches I had pre- lyrica... I am not willing to temp fate and start looking for new headache control when the Lyrica is working ..I have found where Lyrica is used for OCD treatment but nothing saying it casues OCD...

anyone have any insight here ... doctor did say that trying a mild ant-idepressant may help ... have to see him Friday to map out plan or leave things as is ... which is what I am pushing for ... I honestly don't think he would pull the lyrica , but since he said maybe I should come off it, I have nightmares where I am chasing him in a dirty white robe ... I have dark circles under my eyes and I am begging him for lyrica ... 

any input would be greatly appreciated ....


  cornfused in Tennessee
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

Soundy

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Re: Headaches and Lyrica and Side Effects
« Reply #1 on: January 06, 2010, 05:50:19 pm »
was hoping for some help or input ...guss I am hopeless :)
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

CHD63

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Re: Headaches and Lyrica and Side Effects
« Reply #2 on: January 06, 2010, 06:47:02 pm »
Soundy .....

I don't think anyone is ignoring this ..... we just do not know what to say if we have never been on Lyrica.  Many medications can do screwy things to people so I hope and pray that stopping this drug (or substituting it for another) will stop your symptoms.

I truly am sympathetic, just did not personally have this occur .....

Thoughts and prayers.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Cheryl R

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Re: Headaches and Lyrica and Side Effects
« Reply #3 on: January 06, 2010, 07:09:26 pm »
I never saw such a side effect on patients on Lyrica.   The most common I saw when i was working was sleepiness.    But any med can cause some real odd effects in some people.          It would be a hard choice to make whether to stay on it.    Maybe try going off and see if the weird effect goes away.      Good luck as hard when it is a med which really helps!
                                                            Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

ombrerose4

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Re: Headaches and Lyrica and Side Effects
« Reply #4 on: January 06, 2010, 07:12:29 pm »
I am sorry you are having so much trouble with your treatment. If the doctor believes the Lyrica may be causing these OCD problems, then I would suggest coming off the medication. I also think you should get another opinion from a different doctor as to whether Lyrica can cause these problems. I received BOTOX injections about one and a half weeks ago for severe headaches 1-2x's a day; after five days the Botox clicked and no more headaches for right now. Maybe that could work as an option for you. I will do some research on Lyrica and if I found out anything I will post. Good luck and feel better.
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

ombrerose4

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Re: Headaches and Lyrica and Side Effects
« Reply #5 on: January 06, 2010, 07:27:54 pm »
Just did some quick research on Lyrica and many of the sites discuss mood or behavior changes as one of the side effects. Here is a quote from one site :  "thinking abnormal" (primarily difficulty with concentration/attention) were more commonly reported by subjects treated with LYRICA than by subjects treated with placebo ( ≥ 5% and twice the rate of that seen in placebo). Hope this helps :)
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

Rc Moser

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Re: Headaches and Lyrica and Side Effects
« Reply #6 on: January 06, 2010, 08:02:26 pm »
I am so sorry to hear about you headaches, for those of us that have daily headpain know somewhat what your going through. IMO you are stuck in a rock and a hard spot. You don't want to come off the drug fearing your headaches (headaches maybe the wrong term do you you level of pain) will return ( i can relate to that cause I get severe migraines from time to time and usually have headaches daily) but, the drug side effects are starting to question anything you do. Again IMO I would make an effort to come off the drug, you just don't know how worse it could get (even you doctor is concerned) which maybe worse than the head pain if that is the reason you taking the drug.

 Now the hard spot, coming off the drug will surely bring side effects also.  Doctors usually want to prescribe me some new drug for my problems. I look up and read all the possible side effects and to this date I haven't taken any cause most of the possible side effects are worse than the condition I have.  I just don't want to have to go on a drug that will alter my thinking, alertness, and sleep routine.  Some day I may have to take them just to function or get through the day.  I can offer no real answers not being in you shoes. It's going to be a tough go IMO now that you been on the drug for so long either way you go. I can tell you your not along most (but not all) An'er suffer from head pain and size or how long we've  had the tumor seem to not be a factor in headpain pre- or post operation.
9/17/03, 4.5CM, Translab, OU Medical Center, Dr. (the ear man) Saunders and Dr. B. (the BrainMAN) Wilson  along with about 4 other Doctors that keep me going for 18 hours.

lawmama

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Re: Headaches and Lyrica and Side Effects
« Reply #7 on: January 07, 2010, 08:06:04 am »
I suffered from severe headaches for just two weeks after my surgery, so I can't imagine what it is like to suffer from them for years.  In other words, I completely understand why you wouldn't want to give up a medication that is helping them. 

I have very minor OCD tendencies normally- just seems to be part of my very Type-A personality.  Not quite like you describe, but things that shouldn't bug me will.  For example, when I get a Starbucks coffee, I have to make sure the label on the cardboard sleeve is lined up with the one on the cup and that the hole in the lid is lined up with both- or I won't drink it.  Also, when square or rectangle things (like paper or a folder or a box, whatever) are on a square or rectangle table, they have to be parallel.  I can't stand for them to be crooked or at weird angles.  There are other things, but very minor like that.  Ok...a little kooky maybe, but not the end of the world. 

I was put on anti-anxiety medication a few years ago (low dose of Zoloft, if I remember) and I noticed it knocked out some of my little OCD worries.  I was way more laid back in general.  So, maybe the antidepressant would help!  It is worth a try before you go switching your Lyrica around.   

Good luck and I hope it helps.

Lyn
9mm X 7mm tumor (left side), diagnosed 10-15-09
Retrosigmoid on 12-14-09 by Drs. Antonelli and Lewis (my heroes!)
Shands in Gainesville, FL
SSD, but no facial issues.  Mild tinnitus.

CHD63

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Re: Headaches and Lyrica and Side Effects
« Reply #8 on: January 07, 2010, 08:34:06 am »
For example, when I get a Starbucks coffee, I have to make sure the label on the cardboard sleeve is lined up with the one on the cup and that the hole in the lid is lined up with both- or I won't drink it.  Also, when square or rectangle things (like paper or a folder or a box, whatever) are on a square or rectangle table, they have to be parallel.  I can't stand for them to be crooked or at weird angles.

Isn't this normal?   ;D  If it isn't, I have a form of OCD.  Actually I think many people do have certain things that are a bit quirky ..... it is the way we maintain some sense of order to our lives, in the midst of chaos.  I was probably worse about this when my children were young and when I was still teaching.   ::)

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Soundy

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Re: Headaches and Lyrica and Side Effects
« Reply #9 on: January 07, 2010, 08:55:24 am »
I wasn't trying to say people were ignoring this ...just feeling hopeless in figuring out next move ...

I found that about lyrica causing mood and mental changes just not OCD specifically ... also found on my BP med that it can cause mood changes ... skipped it for 2 days and got a headache and pulse went up but not BP ...

as for sleeplessness that they say is an effect of lyrica ... since surgery I have not slept through the niht over maybe 10 to 15 nights ...I sleep in 1-3 hours snatches and then wake up ... sometimes I go back to sleep after a few minues and othertimes I am up for over an our before I can lay back down and drift off again .. then when totally wore out I  have crashed where I sleep for up to 24 hours with husband getting me awake enough to drink a little something and go to bathroom ... he has even tried to get me showered once , but that was a disaster ending with me half showered ,  him soaked and bathroom flooded ...evidently I kinda just slumped down in shower and leaned on wall and slept under the spray ... vaugely remember being wet and when I got up my hair was greasey where he didn't get conditioner rinced out good ....

before lyrica my head ached almost 24/7 and I took the hydrocodone and some accasional morphine and tons of tylonal to get through the day ...did't take as much hydro as I wanted to because I was hoping not to get hooked on it ...I had  a several  trips to ER when pain would start me vomitting , which made it feel like I was hit over surgical site with a hammer , which made more pain that caused more vomitting and I would get in a cycle that I couldn't stop ... and uncovered
$600 -$1000  trips to ER for a headache was not good on the pocket book ...but after several hours of one of those cycles I didn't care about the cost

I see doctor this afternoon ... and we will talk ... maybe an antidepressnat is in order... it has been suggested before but I have resisted ... I am stressing over the thought of pre lyrica days when I hurt so much ...it has helped me so much to function better ... one good thing my doctor said was that since I knew there was a problem I was not too far gone  :P ...he is a nut ...but couldn't get by without him ...

he was going to do some research to get options ... hope he found something ... my insurance is bad and won't pay for alot of things ...follow up MRI's , pain clinic , hearing aid or BAHA and the list goes on and on ... so I rely on him to track down and find answers when I have a problem and so far it has worked ... he gave me the lyrica when the neuro I saw wouldn't and said wait it out to see if headaches would stop on their own ...after a year and half of daily headaches something had to be done and I went to him for help in finding me an answer and he came up with the lyrica... we have an agreement that I will go on to someone else if he isn't satisfied that he can treat something with the help from what he gleans from others  , regardless of mu insurance paying or not ...

kinda getting to the point I was a while back where I am tired of dealing with after effects of surgery but have to go on because of me girls who are 10 and 12 ... they are my reason to go on trying... and most days I am good ...never will be the same but different is good too ... just have to get over this bump ...

thanks for input ...

3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

Soundy

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Re: Headaches and Lyrica and Side Effects
« Reply #10 on: January 07, 2010, 09:10:02 am »
For example, when I get a Starbucks coffee, I have to make sure the label on the cardboard sleeve is lined up with the one on the cup and that the hole in the lid is lined up with both- or I won't drink it.  Also, when square or rectangle things (like paper or a folder or a box, whatever) are on a square or rectangle table, they have to be parallel.  I can't stand for them to be crooked or at weird angles.

Isn't this normal?   ;D  If it isn't, I have a form of OCD.  Actually I think many people do have certain things that are a bit quirky ..... it is the way we maintain some sense of order to our lives, in the midst of chaos.  I was probably worse about this when my children were young and when I was still teaching.   ::)

Clarice


Clarice , you snuck in while my post sat on screen cause I got distracted and didn't hit Post button

I like things lined up ...edges of books in relation to the corner of besk , labels on straight , the rectangle lazy susan on island drives me insane cause it gets bumped and isn't lined up with edge of island ...have thougt of taking it off and taking scroll saw to it and cutting it into a circle but scared that that would bug me so haven't ...and then there is my little corner of dining room that we call the office ...my desk looks like a storm went over and dropped papers and , pencils and ink cartridges and bills and paperclips and even a dollar bill (I am looking around to see what is here today ) ...but for somereason I function in my little messy corner and it doesn't bother me ...but heaven help anyone who touches or moves something on my desk ... it looks so unorganized but I can find what I need and husband tests me to see if I can find a specicific thing in my jumble of school , home , scout and PTO mess and I can ....

I think something in my brain wants to control my enviroment and things I can't control get me ... my mess looks bad but I control it ... the unpainted strip I can't control .. the tile I can't control ... I can control the zeros and five on microwave timer and all is well there ... I have been researching not just the drugs I am on but disorders ... and have come to conclusion that I just have some need to control my enviroment and maybe lyrica brought this to light

can't control the thought that I am cracking up or something even though the things that  bug me are not anything overly important 
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

Cheryl R

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Re: Headaches and Lyrica and Side Effects
« Reply #11 on: January 07, 2010, 10:05:23 am »
Soundy, your desk sounds like mine.  I do straighten it up occ but I know where anything is.        But don't leave things lay on the kitchen table.    That has to be bare.      My island is bare too and but the little counter top between the stove and frig has snacks,buns and food as needed.                 
I have sleep issues and wake up alot every night.     I have strange weird dreams.     I even went off Effexor last summer to see if that would help and didn't.     I am wondering if my Toprol could be part of it but won't try to go off it.     I am on Lexapro now and does help as I don't keep on thinking about my stress issues as much. 
     Oh and we have 7" more snow I can send your way now along with wind today.      LOL!                 Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

lawmama

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Re: Headaches and Lyrica and Side Effects
« Reply #12 on: January 07, 2010, 10:55:11 am »
For example, when I get a Starbucks coffee, I have to make sure the label on the cardboard sleeve is lined up with the one on the cup and that the hole in the lid is lined up with both- or I won't drink it.  Also, when square or rectangle things (like paper or a folder or a box, whatever) are on a square or rectangle table, they have to be parallel.  I can't stand for them to be crooked or at weird angles.

Isn't this normal?   ;D  If it isn't, I have a form of OCD.  Actually I think many people do have certain things that are a bit quirky ..... it is the way we maintain some sense of order to our lives, in the midst of chaos.  I was probably worse about this when my children were young and when I was still teaching.   ::)

Clarice

I think you are right that my examples are just quirkiness, Clarice.  I'm sorry if I didn't make my point very well.  My point was just that when I was on the anti-anxiety meds it made me less anxious about my little hang-ups and more laid back in general, therefore something similar might help with what Soundy is going through (which is clearly a lot more serious than Starbucks labels!)

Soundy, I'm no doctor, but if these things are bothering you and you are noticing them enough that they are interfering with your life, I think that is a problem that should be addressed in some manner.  At the very least you don't want this developing into something worse.  Just my two cents, anyway!

Lyn
9mm X 7mm tumor (left side), diagnosed 10-15-09
Retrosigmoid on 12-14-09 by Drs. Antonelli and Lewis (my heroes!)
Shands in Gainesville, FL
SSD, but no facial issues.  Mild tinnitus.

Soundy

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Re: Headaches and Lyrica and Side Effects
« Reply #13 on: January 07, 2010, 08:51:52 pm »
they didn't bother me when I first noticed ...started bugging me when others noticed ... I guess because I wanted them to be my little secret ...

Tip ...when kids are out of school for weather , call off doctor viisit or chase them out of room ...

they tattle on me ... and sat there and came up with little oddities that I knew I was doing but didn't  think of as OCD behavior ... evidently I sweep counter clock around the island from the end toward dining room to the end facing sink then come back to dining room end and sweep clockwise to the sink end ...don't know when I first started this but it has been awhile and I don't just randomingly sweep whole kitchen and dining room according to kids ...

and I always go up and down same side of porch ... seems like I should go up rmy giht side  and down my right  going down which is the  opposite side of stairs ...but I go up right and  down left  or in otherwords I always use the same side ...and this bothers them becasue normal people go up and down the right side all the time same as traffic on road ...and what if I started driving on the same side all the time ... going to town would be easy but coming home I would wreck us ... they told him this ... we were all laughing at their logic... I don't think I am going to start driving on my right hand side of road all the time ...what's bad is I hadn't noticed I had started doing this ... I kinda thought that when I met people on the stairs they were just getting in my way ...this is not the case according to my two lovelies  :-\ ... they had other little things such as putting shampoo on sower shelf in order shortest to tallest bottle ...

makes me wonder what else I am missing ... and trying not to think about that

anyway ... he talked to several doctors and they agree that prozac or zoloft may help and so I came home with a bottle of prozac and take it for 2 weeks ....report any changes and again check in in a month from now ... all think lyrica probably brought on exagerated variations of things I was already doing...not sure about that and would make me nuts trying to think of just how I swept my floor 6 months ago ...

he read me part of an artical a doctor sent him ...it had classifications of OCD patients ....Hoarders , checkers , Washers , doubters/sinners and and counters /arrangers ...I got him to make me a copy ...evidently I am a counter arranger as is Lyn (not saying you have OCD) ...difference being that my oddities are intruding on my life ...

he couldn't really figure out my desk thing but those he spoke to think it is kinda my brain trying to treat OCD on it's own unconciously  :o... kinda a bit of denial of a problem or trying to fix me by going the opposite way of the OCD things ... when asked if desk had always been this way I had to say no ...always a little untidy but since OCD symptoms started to be obvious desk has gotten worse ...this just inforces what I have learned since loss of funtion since surgery ... brains are amazing things ...they do so much that you take for granted with you not having to think twoce about it ... some little bit was evidently trying to save me from myself ...


here is a little bit of the page he gave me

Washers are afraid of contamination. They usually have cleaning or hand-washing compulsions.

Checkers repeatedly check things (oven turned off, door locked, etc.) that they associate with harm or danger.

Doubters and sinners are afraid that if everything isn’t perfect or done just right something terrible will happen or they will be punished.

Counters and arrangers are obsessed with order and symmetry. They may have superstitions about certain numbers, colors, or arrangements.

Hoarders fear that something bad will happen if they throw anything away. They compulsively hoard things that they don’t need or use.

Just because you have obsessive thoughts or perform compulsive behaviors does NOT mean that you have obsessive-compulsive disorder. Many people have mild obsessions or compulsions that are strange or irrational, but they’re still able to lead their lives without much disruption. But with obsessive-compulsive disorder, these thoughts and behaviors cause tremendous distress, take up a lot of time, and interfere with your daily routine, job, or relationships.

onward and upward ...I will let you all know if this resolves with treatment plan... the doctors think that it will and I will be able to continue with lyrica for headaches
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

lawmama

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Re: Headaches and Lyrica and Side Effects
« Reply #14 on: January 08, 2010, 08:03:23 am »
I'm so glad your doctor is fully aware of this and that you are able to try something to help you!  I hope the Prozac really helps you with the minor OCD and allows you to remain on the Lyrica for your headaches.  At the very least, your doctor now knows about this problem so you have an ally in your battle.  My thoughts and prayers are with you and please keep us updated on how you are doing.   :)

Lyn
9mm X 7mm tumor (left side), diagnosed 10-15-09
Retrosigmoid on 12-14-09 by Drs. Antonelli and Lewis (my heroes!)
Shands in Gainesville, FL
SSD, but no facial issues.  Mild tinnitus.