injectable medications

Mood Swings, Medication, and Multiple Sclerosis

Lisa Emrich Health Guide September 01, 2009
  • This post is for the women living with MS and the caregivers who live with the women living with MS.  (are you with me so far?)  Today, I’d like to talk about premenstrual syndrome, emotional volatility, and multiple sclerosis.  Men, you may want to stick around for this discussi...

42 Comments
  • Vicki
    Health Guide
    Sep. 02, 2009

    This may be a bit off-topic. I did not have PMS before MS, I do not nor have I ever taken disease modifying drugs. (Now you get the off topic label)


    However, when I took prednisone for a symptom a friend told me it was obvious I was on steroids. I did not notice myself a could not tell you how the timing related with my cycle. (Again off topic)


    My reason...

    RHMLucky777

    Read More

    This may be a bit off-topic. I did not have PMS before MS, I do not nor have I ever taken disease modifying drugs. (Now you get the off topic label)


    However, when I took prednisone for a symptom a friend told me it was obvious I was on steroids. I did not notice myself a could not tell you how the timing related with my cycle. (Again off topic)


    My reason for commenting here, besides finding this an interesting subject, is that MS may be responsible for mood swings.  I have heard of other instances where women tend to work around their cycles. (We are amazing creatures after all) The main point is as you said, Lisa, "we must be accepting and flexible, especially with ourselves." And what about menopause?

    • Lisa Emrich
      Health Guide
      Sep. 02, 2009

      Vicki,

       

      Certainly nothing you have said is "off topic."  Everything is related somehow.  Yes, mood swings themselves can be connected with MS.  And we probably do not need to have brain lesions in just the right area for this to be the case.  (If we did, then that excuse would be taken away.)

       

      While on steroids, I definitely...

      RHMLucky777

      Read More

      Vicki,

       

      Certainly nothing you have said is "off topic."  Everything is related somehow.  Yes, mood swings themselves can be connected with MS.  And we probably do not need to have brain lesions in just the right area for this to be the case.  (If we did, then that excuse would be taken away.)

       

      While on steroids, I definitely have mood swings.  Watch out!! 

      Menopause - another interesting topic.

    • Lisa Emrich
      Health Guide
      Sep. 06, 2009

      Hey Vicki,

       

      I should mention that several days ago I decided to delve further into this topic.  Ironically since that decision, I've been experiencing many more mood swings and must admit that I've slipped into a major depression episode (although still recoverable).

       

      This will be good for me to face this topic out in the open.  MS and...

      RHMLucky777

      Read More

      Hey Vicki,

       

      I should mention that several days ago I decided to delve further into this topic.  Ironically since that decision, I've been experiencing many more mood swings and must admit that I've slipped into a major depression episode (although still recoverable).

       

      This will be good for me to face this topic out in the open.  MS and mood - watch out!!

  • maggie mae
    Feb. 14, 2012

    mel,

    i am about to loose my marriage due to mood swings which i refused to believe were recking my life and my husbands. i also took copaxone but have been off the drug for a year. i will make a call tomorrow and see what my dr. suggests.

     

    thanks more than you know,

     

    maggie mae

    • Lisa Emrich
      Health Guide
      Feb. 20, 2012

      I'm sorry to hear that mood swings have impaired your life (relationship specifically).  What did your neurologist say when you called?

  • Anonymous
    jed9999
    Dec. 18, 2009

    Hello-I have some credibility just from having had MS for 36 years. I always noticed an increase in pain and other MS symptoms when I would be around my period time-every month. When I turned 45, I think it was, and became eligible by my doctor's standards, I asked to be put on Prempro after first a period on hormones, because it just made sense to me...

    RHMLucky777

    Read More

    Hello-I have some credibility just from having had MS for 36 years. I always noticed an increase in pain and other MS symptoms when I would be around my period time-every month. When I turned 45, I think it was, and became eligible by my doctor's standards, I asked to be put on Prempro after first a period on hormones, because it just made sense to me to be on even keel hjormonally for my MS's sake.

     

     This was long before the questioning of Prempro, and I thrived without the ups and downs during the month, and having no periods and was very pleased with the non-effect it seemed to have on my MS. I even stayed on Prempro a bit past the time when most people freaked about the negative possibilities. At 60, I don't have to keep up with modern things that are available, but I urge other women with MS to look into whatever pleases them and gives them fewer to no periods. It's a wonderful thing to create mlore stability yourself in your MS by controlling the emotonal factors that have physical counterparts just because we are women. Best of luck with your beast! Jane

    • Lisa Emrich
      Health Guide
      Dec. 18, 2009

      Jane,

       

      Thanks for sharing your experience with hormone replacement therapy, ie. Prempro.  I had wondered if simply being on an even hormonal plane would benefit the minor ups and downs with MS.  It seems that it does!!

  • boatergirl
    Sep. 28, 2009

    Hi Lisa,there seems to be so many of the same symptoms that could be different kinds of diseases.I thank you so much for your story.I'll have to read it over and over because my memory is so bad-but I know reading it once made me feel so much better about the last 10 yrs of my life.I would never be able to type all of the detail, anyway here's some of...

    RHMLucky777

    Read More

    Hi Lisa,there seems to be so many of the same symptoms that could be different kinds of diseases.I thank you so much for your story.I'll have to read it over and over because my memory is so bad-but I know reading it once made me feel so much better about the last 10 yrs of my life.I would never be able to type all of the detail, anyway here's some of it.starting 10 yrs ago I went from very active, mostly happy,some mood swings,tempers or crying spells;started getting a bit depressed, all of a sudden parts of my body felt soooo heavy and painful . For the most part lost the use of my legs.I was in a wheel chair, stopped driving and to hire a caregiver for many reasons.All of a sudden I got put on several psychotrobic meds.Over a period of 5 yrs (to me hell)being told I am severly depressed,basically gone crazy because there's no reason I've lost the use of my legs. so here's more medicine to take. Now I don't know how many pills I was on a day and feeling more depressed.I knew since I used to be so active and always wanting to do fun things and loved life so much I couldn't just give up.I felt dead,was sure I must of been dieing from something?When people (including husbands) think you must just be crazy;with not much support from friends that were there for fun times or neighbors that were fun and neighborly etc.I didn't want to live feeling so helpless anymore.With 1 friend at the time,she took me to buy a walker.this was one of many embarrsing days.Just going into the medical supply store at age 40 was one of many tough days.Too young to be doing this.8 yrs later and a up and down rollercoaster rides , got the strength back(body and mind)and starting boating.Got rediagnosed from severe depressent to bipolar withall those yrs watched for MS.Now another 3 more yrs have passed and now possitive MS;a total of 10-11 yrs later, ALOT of unnessary medication,colectomy(now only taking copaxone,lyrica and prozac)50 yrs old and I'm loving life again.I realize it WAS MS all along,I'm not crazy. All those bad episodes were MS related illnesses I'm really ok.Now there is a real explaination when I don't feel good,numb, weak,limbs too heavy to lift,body too heavy to get up,can't see(optic neuritis)or seeing things move when the're not ,on and on.There is so much to deal with on and off .Too bad it takes so long to diagnose.Anyway Lisa with all your information you shared I'm not resentful at drs anymore.Can't go backwards in life so might as well move foward and get all the boating in I can when I can and enjoy the people that are in my life now. It all came together in talking to my new drs and because of your story. THANKYOU SO MUCH!       BOATING GIRL

    • Lisa Emrich
      Health Guide
      Dec. 04, 2009

      Boatergirl,

       

      I have come back and reread your comment several times.  It has really touched me and I'm so very glad that life is going much better for you.  It is hard to not have explanation for things happening in our lives and bodies which are out of our control.

       

      At the time you first posted this, I wasn't sure what to say.  But...

      RHMLucky777

      Read More

      Boatergirl,

       

      I have come back and reread your comment several times.  It has really touched me and I'm so very glad that life is going much better for you.  It is hard to not have explanation for things happening in our lives and bodies which are out of our control.

       

      At the time you first posted this, I wasn't sure what to say.  But now I simply want to say THANK YOU!!

  • kimbba
    Sep. 10, 2009

     I noticed in the past 3 years i have had servere PMS. I have had MS for 4 years and have been on copaxone for 2 years. I am 39 years old and never had PMS. I mean crazy emotions all i want to do is scream,i have no control over it. it gos away in about 3 to 4 days, then i start and i feel some what back to normal. I hate the feeling!

    • Lisa Emrich
      Health Guide
      Sep. 10, 2009

      Hi Kimmba,

       

      That's interesting.  Seems like many of the women here are experiencing similar things, regardless of which medication they might use, if any.  I'm sorry that you are experiencing this too, but at least now you know what to expect.  But that definitely doesn't make the feelings (and out-of-controlness of them) any easier when...

      RHMLucky777

      Read More

      Hi Kimmba,

       

      That's interesting.  Seems like many of the women here are experiencing similar things, regardless of which medication they might use, if any.  I'm sorry that you are experiencing this too, but at least now you know what to expect.  But that definitely doesn't make the feelings (and out-of-controlness of them) any easier when it's happening.

       

      Thanks for joining the discussion.  :)

  • MarlaKaye
    Sep. 08, 2009

     

    Dear Lisa,,

         I am glad you are writing about this. I know how it is so helpful to people. I wish I had known these things twenty years ago.

    Fifteen years ago I did the best thing for myself, by having a full hysterectomy. The exacerbations of MS, dystonia, and pms were so horrible that my life was at risk every month and...

    RHMLucky777

    Read More

     

    Dear Lisa,,

         I am glad you are writing about this. I know how it is so helpful to people. I wish I had known these things twenty years ago.

    Fifteen years ago I did the best thing for myself, by having a full hysterectomy. The exacerbations of MS, dystonia, and pms were so horrible that my life was at risk every month and sometimes even at times of ovulation. MS was wreaking havoc with my life and health and using my own blessed female body to do it to me. (and my family)

    I was past the age of having children, at the age of 36... in my case, too ill to care for children anyway.

    It did not cure MS, but at least now I have a bit of a life. Even confined to a wheelchair, isn't so bad without the menstral cycle.

    It is difficult to think about those days,, because it was so traumatic for me and my family. But I would be remiss to not share this with women who are struggling with these matters today.

    I still remember painfully how I turned into that angry,  frightened, paranoid, hurting woman, I didn't know. Countless times I tearfully told my husband, that it wasn't me.

     

         I appreciated what you said about knowledge empowering one to deal with something. Without it, there only remains confusion and condemnation. My husband has been a jewel to stay with me through all this, and it is a wonder that my grown son(age 30) is as sane as he is. I am still recovering myself from the trauma of the drama.

         I am here and willing to share experiences and offer support  to anyone who needs to talk about this.

    MarlaKaye

     

     

    • Lisa Emrich
      Health Guide
      Sep. 10, 2009

      MarlaKaye,

       

      Thank you so much for sharing your story here.  It is interesting that you would experience such a huge difference in your MS after having a hysterectomy.  I'm sure that there are many women who are interested in knowing that.

       

      The topic of depression, mood, and mental health is a personal one, and one which I haven't discussed...

      RHMLucky777

      Read More

      MarlaKaye,

       

      Thank you so much for sharing your story here.  It is interesting that you would experience such a huge difference in your MS after having a hysterectomy.  I'm sure that there are many women who are interested in knowing that.

       

      The topic of depression, mood, and mental health is a personal one, and one which I haven't discussed much here.  Just seems like it's about time to dig in and get it out in the open.

  • Nancy D
    Sep. 06, 2009

    Hi Lisa!  You always have such interesting topics.  I have mood swings and lately a good dose of depression.  I have been trying to adjust to Copaxone for seven months and am about to go back to Avonex (although I worry about increased side of depression?)

    I have such severe site reactions and just have felt a general decline since starting Copaxone. ...

    RHMLucky777

    Read More

    Hi Lisa!  You always have such interesting topics.  I have mood swings and lately a good dose of depression.  I have been trying to adjust to Copaxone for seven months and am about to go back to Avonex (although I worry about increased side of depression?)

    I have such severe site reactions and just have felt a general decline since starting Copaxone.  One thing that sounds so crazy is that I have the most bizarre and intense dreams which began  immediately when I started Copaxone.  I did find from Shared Solutions that this can be a rare side effect. I have wondered if that is contributing to my moodiness because these dreams are real doozies, always very complicated and anxiety producing type.  I'm probably not getting the "good sleep" I need.  Wonder if anyone else has any of this from Copaxone?  I think my body just doesn't agree with Copaxone - sometimes all my recent sites (from like the last week) decide to come back and react after my injection.  Warm spots with little raised bumps where the needle was injected. 

       I think it's so wonderful to have all this support.  It always makes me feel like I'm not alone!  Thank you, Lisa!

     

    Nancy D.

     

     

    <!--Session data-->

    • Lisa Emrich
      Health Guide
      Sep. 10, 2009

      Hi Nancy, thank you!!

       

      I'm sorry to hear that Copaxone is simply not agreeing with you.  That's not fair.  And depression?  well, I've been there lately too.  Frown

       

      But your experience with bizarre dreams is very interesting.  I used to get those as a side-effect of starting an anti-depressant or increasing the dose.  They...

      RHMLucky777

      Read More

      Hi Nancy, thank you!!

       

      I'm sorry to hear that Copaxone is simply not agreeing with you.  That's not fair.  And depression?  well, I've been there lately too.  Frown

       

      But your experience with bizarre dreams is very interesting.  I used to get those as a side-effect of starting an anti-depressant or increasing the dose.  They didn't last too many weeks but were certainly noticed as being distinct and new.

       

      If Avonex was working well for you (or at least better than Copaxone), then certainly think about it and talk more with your doctor.  Maybe he/she will have even more suggestions.

       

      I hope that you begin to feel better soon.  Hey, don't forget the Delaware MS chat at Joan's tomorrow.  I don't know if I will be there or not but just wanted to remind you.

    • kimbba
      Sep. 11, 2009

       

      It blows me away to hear someone else is having intense dreams. I have been having over whelming dreams to the point that I sometimes hallucinate, talk and even scream out in my sleep. My dreams are not always scary or filled with anxiety, but even the good dreams are very intense and emotional as if i was half-awake and half-asleep. I put it off to...

      RHMLucky777

      Read More

       

      It blows me away to hear someone else is having intense dreams. I have been having over whelming dreams to the point that I sometimes hallucinate, talk and even scream out in my sleep. My dreams are not always scary or filled with anxiety, but even the good dreams are very intense and emotional as if i was half-awake and half-asleep. I put it off to stress. copaxone is the only med that i can take that seems to do my body any good, even through the side effects.

       

    • boatergirl
      Sep. 28, 2009

      Hi- I was getting on to see this am if anyone else was having these crazy type dreams.I had a moose (seemed so real) walking around my bed rm last night ,I was freaking out then he walked right into my bed!I guess these are copaxone indused dreams.When I started copaxone 1-1/2 mo ago I started right away with the most vivid crazy dreams.I usually wake up in...

      RHMLucky777

      Read More

      Hi- I was getting on to see this am if anyone else was having these crazy type dreams.I had a moose (seemed so real) walking around my bed rm last night ,I was freaking out then he walked right into my bed!I guess these are copaxone indused dreams.When I started copaxone 1-1/2 mo ago I started right away with the most vivid crazy dreams.I usually wake up in a panic attack.I/m working on it tho and try to realize in the middle of the night if I can just snap out of it and wake up,look around,know I am safe and I can go back to sleep for another adventure.    boatergirl

  • Anonymous
    merryanne
    Sep. 04, 2009

    Hi...

     

    Interesting comments.  I was especially interested in the fact that you are on Copaxone.  I was on Copaxone for nine months and it was like pure poison for me.  I was without symptoms prior to taking it, but because of MRI indication of lesions, a neuro put me on it.  The ill effects started almost immediately, but "everyone"...

    RHMLucky777

    Read More

    Hi...

     

    Interesting comments.  I was especially interested in the fact that you are on Copaxone.  I was on Copaxone for nine months and it was like pure poison for me.  I was without symptoms prior to taking it, but because of MRI indication of lesions, a neuro put me on it.  The ill effects started almost immediately, but "everyone" kept telling me to give it time...the neuro, the Copaxone nurse, the neuro's nurse.   After nine months of absolutely agony....site injections were horrendous, and I developed urine retention which I never had previously, plus the emotional side of my mental  balance was completely off...mostly due, I think, to the physical pain the injections were causing me. And also because of three megadoses of steroid infusions.  I ended up in the E.R. with a drug induced psychosis because of it. Couldn't stand it anymore, and went to get a 2nd opinion.  Still came up with MS (at age 58....postmenopausal...bummer).  But the new doc listened and went over my MS med options and I've started Beteseron.  After three weeks of being off the Copaxone, my site injections are barely existant, my bladder function is completely normal (a urologist wanted me to start self-cathing...that was an ultimate low...so I also went to a new urologist).  My energy level is even better.  I teach art full time to 500 elementary students and I do get tired, but work throught it.   I actually feel like myself again.  I don't know who was inhabiting my body during that 9 month Copaxone stint.  Of course, I'm not a fortune teller....but I do think that I know my own body and I'm glad that I found a neuro who actually listened to me and didn't just brush me off as hysterical. So, I guess that everyone needs to find their own MS truth, but I know that mine definitely does not include Copaxone.  I figure that the less pharmeceuticals I put in my body, the better off I am. Also, at the beginning of the MS treatment I was put on Amantadine and Provigal.  Hated them both. Summer before last, prior to my diagnosis, I climbed The Chimney Tops in the Smoky Mts.Not at the speed of lightning, but I did it.  This past summer, during the Copaxone treatment, I could barely do an "easy" 2 mile hike.  Right now, I feel like I could do the Chimney Tops again.  Go figure.

    • Lisa Emrich
      Health Guide
      Sep. 05, 2009

      Wow, hiking the Chimney Tops.  That's great!!

       

      Sorry to hear that Copaxone was such torture for you.  The different ways our bodies react to medications is very interesting.  I'm glad that Betaseron seems to be working well with your body and that you are feeling good again.

       

      The steroid-induced psychosis is a very serious side-effect...

      RHMLucky777

      Read More

      Wow, hiking the Chimney Tops.  That's great!!

       

      Sorry to hear that Copaxone was such torture for you.  The different ways our bodies react to medications is very interesting.  I'm glad that Betaseron seems to be working well with your body and that you are feeling good again.

       

      The steroid-induced psychosis is a very serious side-effect which folks should become aware of.  I have an online friend who ended up in a mental hospital during, or following, Solumedrol treatment for a relapse.  Knowing that I have a history of depression, I watch that carefully while taking steroids.

       

      I hope that you continue to be doing so well and it's nice to meet you here.

    • Anonymous
      merryanne
      Sep. 05, 2009

      Hi Lisa...

       

      I enjoyed reading your reply.  You sound like you are very level headed, which is not one of my better traits.  I guess that when I wrote, I was feeling pretty cocky, because the fickle finger of fate took a jab at me yesterday.  I'm not sure if it is the beginningins of a reaction to the Beteseron (flu like symptoms), or if...

      RHMLucky777

      Read More

      Hi Lisa...

       

      I enjoyed reading your reply.  You sound like you are very level headed, which is not one of my better traits.  I guess that when I wrote, I was feeling pretty cocky, because the fickle finger of fate took a jab at me yesterday.  I'm not sure if it is the beginningins of a reaction to the Beteseron (flu like symptoms), or if it really is some sort of cold/mild flu from being in contact with 500 germ carrying little children for the past six weeks. (I really do love kids....it's just that they do come with certain health risks!). Nothing terribly horrible for me....just a sore throat and runny nose....plus I took a warm bath thinking it would help and I've ended up with water in my right ear which I can't seem to get dislodged.  Oh yeah, and let's throw in a vaginal infection, too.  I must say, that getting back to teaching has been taxing.  We have a new report card system, and I ended up staying late every night for some school related function...either my own, or for one of my children.  I have a special needs daughter and her open house was Thursday night, and it was probably one 16 hour day too many, and I crashed.  It's days like this that I think that it's time to check out disability.  It's my insurance coverage that keeps me going, more than anything.  Anyway, I did enjoy hearing from you.  If you would like to write again and let me know more about you....when you were diagnosed, how you've handled it all, etc., I would love to hear from you.

       

      Hope you have a good, long Labor Day weekend.

    • Lisa Emrich
      Health Guide
      Sep. 06, 2009

      Hi Merryanne, I don't know if your new flu-like symptoms could be from Betaseron or the kids. Certainly jumping into the new school year and being exposed to who-knows-what doesn't help.  If you're not already, try taking some Tylenol or Aleve to help with the Betaseron.  For the kids, no words of advice. 

       

      It's very neat that you are able...

      RHMLucky777

      Read More

      Hi Merryanne, I don't know if your new flu-like symptoms could be from Betaseron or the kids. Certainly jumping into the new school year and being exposed to who-knows-what doesn't help.  If you're not already, try taking some Tylenol or Aleve to help with the Betaseron.  For the kids, no words of advice. 

       

      It's very neat that you are able to teach art to so many.  I teach music lessons (piano and french horn) to kids and some adults.  I have strict hygiene rules (ie. wash with soap in MY bathroom before touching the piano) and still manage to get coughed at or sneezed at on occasion.  Just goes with the territory.

       

      I hear you about continuing to work in order to keep insurance.  So many people say the same thing.  Sixteen hour days are unimaginable to me right now.  How much extra energy would you say it takes to care for the special needs of your daughter?

       

      BTW, I was dx 2005 but had optic neuritis (blind for 2 months) in 2000.  I write here and maintain a blog and host the Carnival of MS Bloggers.  Connecting online with others has turned from a hobby to almost a full-time adventure.

    • merryanne
      Sep. 09, 2009

      Hi Lisa...

       

      Once again, thank you for your reply.  You mentioned that you don't know how I manage 16 hr. days.  I just struggle through, then usually spend the entire weekend as a vegetable.  The "flu-like" symptoms were pretty short lived, so I'm guessing that one of my little students gave me a bug.  Still, I spent all day Saturday...

      RHMLucky777

      Read More

      Hi Lisa...

       

      Once again, thank you for your reply.  You mentioned that you don't know how I manage 16 hr. days.  I just struggle through, then usually spend the entire weekend as a vegetable.  The "flu-like" symptoms were pretty short lived, so I'm guessing that one of my little students gave me a bug.  Still, I spent all day Saturday sleeping.  You also asked how much stress my special needs daughter causes.  I can't begin to tell you.  We adopted her from Romania when she was 10 years old, and had been in an orphange her entire life.  Everything that we were told about her from the adoption agency was a lie.  We were so naive.  But by the time we got to Romania, everything was "signed, sealed and delivered".  The moment I saw her I knew we were going to be in for a rough ride.  Besides having Reactive attachement disorder (we were told she was cooperative and helpful with her peers), she is also borderline MR (we were told that she was bright and spoke three languages), she has disassociative personality disorder, ADHD, Tourettes, is suicidal (she cuts and self harms), homicidal (she threatens, broke the cat's tail, pounded on me and her sister).....sadly, I could go on.  This was all before I knew I had MS, too.  She kept getting angry with me because I was so tired all the time....that I wasn't "entertainment central" and why wasn't I like the mom in Gilmore Girls.  Three years ago she "jumped" me while I was sleeping and hit me in the face with a VHS tape.  We had been through so many therapists, tests, and on and on....while still trying to work (plus we have four other children....who were teenagers at the time, but were losing a lot of any kind of decent family time).  Finally, our insurance said that she did need psychiatric evaluation....30 pages of bad news....and because of her danger to herself and others, was placed in a residential facility.  We've been working with them for years, and there have been various placements.  Originally, it was hoped that she would be place back in the home, but she proceeded to get worse.  She has been at a girl's facility (behaviorial and psychiatric issues), and we've tried to keep her connected with us.  However, this past weekend, she became violent (because we told her it was time to take her medicine), started a string of profanities, refused to get in the car to go back to the center, and proceeded to clobber me on top of the head with her closed fist (she is very small, but very strong) and in the process, also hit my head with a bracelet that she was wearing made out of heavy, ceramic beads.  I didn't faint, but I swooned and was in extreme pain.  I called 911 to get the police to take her back, but her dad managed to get her back to the center.  I guess 911 heard everything that was going on in the background, and even though I said that we had it under control (kinda) and that they would not need to come to the house, they did so anyway.  I was in the livingroom crying my eyes out...both because of the physical pain and the emotinal pain.  They wanted to call EMS for me, but I told them I would have my husband take me to the hosp. when he came back.  She did give me quite an "egg" and a bruise on my forehead.  This is where it gets complicated, because she is now 18 and an "adult" and they wanted to know if I wanted to press charges.  What a mess.  They did have a decective contact me however. She was wonderful and talked to me about having a Mental Inquest Warrent...which I am seriously thinking of doing.  Our daughter would be court ordered to a local hospital for a 72 hr. evaluation to determine her stability.  It might be the best thing.  I can't have her come to this house any more.  I've tried for 8 years.  My therapist, at some of the worst points, told me that I had Post Tramatic Stress from her terrorizing me.  Wow.  I bet you got more than you bargained for when you asked me that question.  But the timing was perfect.  Thank you, so much, for a therapeutic moment with me.  I know that you have a blog, and I may at some point join.  I'm not very technologically saavy, and I'm rather private, not to mention more than overwhelmed with my life at the moment.  But the good news is....no more Copaxone site reactions.  I thought that it was interesting, too, that after I would give myself the Copaxone injections, I would start to tremor. Since I stopped taking it, no more tremors.  I may have mentioned that to you before.  But I am highly suspicious of the drug companies and what they try to get into us in the name of making us "better".  Hope you have a good week, and thanks again for listening.

    • Lisa Emrich
      Health Guide
      Sep. 10, 2009

      Wow, merryanne, you have alot to deal with.  I can hardly imagine what you've gone through and tried to do for your daughter.  I hope that the situation continue to get better (evaluation, resident treatment, etc).

       

      And it's wonderful that you no longer have Copaxone site reactions.  Over the years, mine have diminished greatly and problems...

      RHMLucky777

      Read More

      Wow, merryanne, you have alot to deal with.  I can hardly imagine what you've gone through and tried to do for your daughter.  I hope that the situation continue to get better (evaluation, resident treatment, etc).

       

      And it's wonderful that you no longer have Copaxone site reactions.  Over the years, mine have diminished greatly and problems do not arise unless I venture into an area which hasn't seen much injection action for awhile.

  • Anonymous
    Kath
    Sep. 03, 2009

    As I sit here reading this article and everyone's comments my neck is sore from shaking my head. He He I too experience this quite often. Yesterday was tears, tears, and more tears. The day before that was anger that scares even myself. I thought I was really going insane and so does my husband. Forget about right before my cycle I am like Lucifer's evil twinn. ...

    RHMLucky777

    Read More

    As I sit here reading this article and everyone's comments my neck is sore from shaking my head. He He I too experience this quite often. Yesterday was tears, tears, and more tears. The day before that was anger that scares even myself. I thought I was really going insane and so does my husband. Forget about right before my cycle I am like Lucifer's evil twinn.  It has really disrupted my life and my my marriage. So I thank you all for all your comments and for this article. Now that I know I am not insane I can learn to deal with it better and my husband can understan it and not think I am just loosing it.

     

    I am on Rebif and I have noticed the symptoms worsen since then. It has been 2 years on them.  I also take Provigil and did not realize the symptoms of the either so thanks again for that.

     

    I am having my husband read this now and I will talk to my doctor about this and we can finally start to deal with it.

     

    ((((((((Big Hugs)))))) to all of you.

    • Lisa Emrich
      Health Guide
      Sep. 05, 2009

      Kath,

       

      I'm so sorry to hear that you experience these wide mood swings also.  But it's good to know that we're not alone.  Since there's been such a reaction to this one post, I think I'll talk more about how mood and MS can be related.  I am one who lives with depression and find that I need to be mindful of minor changes so as to detour...

      RHMLucky777

      Read More

      Kath,

       

      I'm so sorry to hear that you experience these wide mood swings also.  But it's good to know that we're not alone.  Since there's been such a reaction to this one post, I think I'll talk more about how mood and MS can be related.  I am one who lives with depression and find that I need to be mindful of minor changes so as to detour a major depressive episode.

       

      I'm so glad that you've come to comment.  It helps me to get to know you better.  Hopefully this helps the hubbie understand a little bit of what we deal with while living with MS.  Good luck with talking to the doctor.

  • hmking4
    Sep. 03, 2009

    I read something recently  in Motivator Summer 2006 on involuntary emotional expression disorder that stated that this is now recognized by MS experts as caused by neurological disorders including MS.  Provigil almost lead to an emotional breakdown for me.  Never take it.  If I take the full dose of 4-Aminopyridine I experienced within days...

    RHMLucky777

    Read More

    I read something recently  in Motivator Summer 2006 on involuntary emotional expression disorder that stated that this is now recognized by MS experts as caused by neurological disorders including MS.  Provigil almost lead to an emotional breakdown for me.  Never take it.  If I take the full dose of 4-Aminopyridine I experienced within days extreme irritability which I don't connect with having gotten my dosage up to what is considered therapeutic until I feel "extreme rage."  I've given up trying to get 4-aminopyridine up to what is the recommended dosage for the fatigue but have found that it is very effective for my fatigue and endurance at half the dose.  I've found it very helpful to keep written notes of when I feel either very good or very bad.  Found that generally I'm pretty calm.  When I'm in a very stimulating, noisy, loud, and distracting environment I think it activates the IEED.  

    • Lisa Emrich
      Health Guide
      Sep. 03, 2009

      Thank you for pointing this out.  I forgot to mention Pseudobulbar Affect, also known as Involuntary Emotional Expression Disorder, or Emotional Lability, within this post so that the difference could be pointed out.

       

      Yes, emotional lability can be caused by a neurological disorder including MS.  I can hardly imagine how difficult it would be...

      RHMLucky777

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      Thank you for pointing this out.  I forgot to mention Pseudobulbar Affect, also known as Involuntary Emotional Expression Disorder, or Emotional Lability, within this post so that the difference could be pointed out.

       

      Yes, emotional lability can be caused by a neurological disorder including MS.  I can hardly imagine how difficult it would be to live with that symptom (disorder) as well.

       

      Your warning regarding Provigil is also an excellent word of advice.  The adverse risks of increased anxiety, psychosis, and thoughts of suicide are now included on the label.  But very few people read those warnings.

       

      I'm glad that 4-aminopyridine is working for you.  Fatigue is no fun.

    • hmking4
      Sep. 03, 2009

      Thanks for the info in Provigil.  I "fired" two physicians because they failed to treat me properly for "Provigil toxicity"!  I'm pleased to know that those three side effects are now on the label.  But -- I must add -- when I was on it I wanted to stay on it because I thought I had no other choice in finding something that could keep me standing...

      RHMLucky777

      Read More

      Thanks for the info in Provigil.  I "fired" two physicians because they failed to treat me properly for "Provigil toxicity"!  I'm pleased to know that those three side effects are now on the label.  But -- I must add -- when I was on it I wanted to stay on it because I thought I had no other choice in finding something that could keep me standing and moving through the day.  If my friends and family had known what to watch for in my behavior, they could have pointed out when I was starting to become unreasonable and advised me to find something else.  Now I know what to watch for!

  • Anonymous
    Kell
    Sep. 01, 2009

    I was diagnosed at 40 and talked to my nurse practioner about the mood swings I was having and how it was like PMS on steroids. My husband and I would joke about if it was going to be an angry month, a crying month, or an even keel month. I also felt a lot worse than usual--worse cramps, worse exhaustion, worse spasms. She told me that I could experience MS...

    RHMLucky777

    Read More

    I was diagnosed at 40 and talked to my nurse practioner about the mood swings I was having and how it was like PMS on steroids. My husband and I would joke about if it was going to be an angry month, a crying month, or an even keel month. I also felt a lot worse than usual--worse cramps, worse exhaustion, worse spasms. She told me that I could experience MS symptoms with my menstrual cycle. I almost hugged her because I was so happy that she didn't say, "Well, you are in your 40s now," which is what everyone else was telling me. I told her I could live with the physical symptoms (luckily, my case is fairly mild), but if I didn't do something to even out my moods, I was going to be divorced by the end of the year. She put me on Wellbutrin, which has helped. I was also dealing with some depression, which it and a therapist helped with. Some people still insist that I'm just pre-menopausal. That could be part of it, sure, but I can't rule out that MS could also be a factor, since not everything I'm experiencing is typical PMS stuff.

     

    Oh, and I take Avonex. I was having these symptoms before I started taking the medication, so I don't think it's a side effect. I know depression is a side effect, but again, I was struggling with that before my diagnosis.

    • Lisa Emrich
      Health Guide
      Sep. 01, 2009

      Thanks Kell,

       

      I'm about to turn 41 on Monday and had my first documented case of optic neuritis at age 32.  I have noticed distinct changes in my cycle in recent years; but oddly enough, I don't really experience the increased MS symptoms each month.  This is unless we can say that the mood swings themselves are strictly MS symptoms.  (I...

      RHMLucky777

      Read More

      Thanks Kell,

       

      I'm about to turn 41 on Monday and had my first documented case of optic neuritis at age 32.  I have noticed distinct changes in my cycle in recent years; but oddly enough, I don't really experience the increased MS symptoms each month.  This is unless we can say that the mood swings themselves are strictly MS symptoms.  (I had not looked at it quite that way, simply blaming Copaxone due to the timing of the change.)

       

      After years of dealing with depression and being on Zoloft, my nurse practitioner prescribed Wellbutrin last fall and I've been very slowly tapering off of Zoloft since.  The change in overall mood has been very positive for which I'm very thankful.

       

      Whatever the cause of this unbelievably strong wave of rage or sadness which comes for about 3 days each month, it is good to at least know that I'm not alone.  It's good to know that none of us are alone.

  • Anonymous
    Carole
    Sep. 01, 2009

    Most definatley I have extreme mood swings and a discernible heightening of MS symptoms at   "that time of the month" and the days leading up to it.  I never had most of my life . The doctors  orginally said it was peri menopause, but now say it is linked to MS.

     Stange that MS is the cause and the result is more symptoms.

    I don't take any...

    RHMLucky777

    Read More

    Most definatley I have extreme mood swings and a discernible heightening of MS symptoms at   "that time of the month" and the days leading up to it.  I never had most of my life . The doctors  orginally said it was peri menopause, but now say it is linked to MS.

     Stange that MS is the cause and the result is more symptoms.

    I don't take any drugs except recently trying THC vapour

    • Lisa Emrich
      Health Guide
      Sep. 01, 2009

      Carole,

       

      This is also interesting.  My doctors have used the term peri-menopausal just yet, but there has been a definite change of cycles.  I used to be extremely predictable 28-30 days; now it's more like every 21-24 days and only lasts 3.  This coming Monday, I turn 41 years old.  Too young for these changes (I think).  Thankfully,...

      RHMLucky777

      Read More

      Carole,

       

      This is also interesting.  My doctors have used the term peri-menopausal just yet, but there has been a definite change of cycles.  I used to be extremely predictable 28-30 days; now it's more like every 21-24 days and only lasts 3.  This coming Monday, I turn 41 years old.  Too young for these changes (I think).  Thankfully, those around me are very understanding and accepting of my outbursts and moodiness at times.

       

      In reading your blog, it sounds like THC is working for you.  That's good to know although it is not legal in the state of Virginia.  On Sunday, I broke down and brought out a little Xanax to ease the mood swing.  It worked.  :)

    • Anonymous
      Donna
      Sep. 05, 2009

      What is THC vapor?

       

      I had a total hysterectomy 10 years ago, so I can't blame hormones (estrogen, testosterone,FSH...) or Copaxone. I believe that it is the MS that causes the mood swings. I can have mood swings at almost any given time of the month. They get worse with solumedrol, I hated myself while I was on that. It was like somebody else stepped...

      RHMLucky777

      Read More

      What is THC vapor?

       

      I had a total hysterectomy 10 years ago, so I can't blame hormones (estrogen, testosterone,FSH...) or Copaxone. I believe that it is the MS that causes the mood swings. I can have mood swings at almost any given time of the month. They get worse with solumedrol, I hated myself while I was on that. It was like somebody else stepped out of my body and was mean, weepy and angry all at once.

    • Lisa Emrich
      Health Guide
      Sep. 06, 2009

      Hi Donna,

       

      THC, or Tetrahydrocannabinol, is the active ingredient in medical marijuana which can be used either in a vapor form or a smoked form.  I do not have experience with THC which is currently legal in 13 states in the US (Carole lives in Canada).

       

      Since this post was received with so many comments, I am going to delve a little deeper...

      RHMLucky777

      Read More

      Hi Donna,

       

      THC, or Tetrahydrocannabinol, is the active ingredient in medical marijuana which can be used either in a vapor form or a smoked form.  I do not have experience with THC which is currently legal in 13 states in the US (Carole lives in Canada).

       

      Since this post was received with so many comments, I am going to delve a little deeper into the issue of mood and MS.  Definitely, MS can be the cause of our mood swings.  I didn't mean to make like of this issue....was just venting a little in hopefully a humorous way.  :)

  • Anonymous
    Mel
    Sep. 01, 2009

    Well girls, let met tell you something, it's not only Copaxone related. I'm taking Tysabri and I'm caught with mood swings as well. I took Copaxone and Rebif before and had the same thing. I've always wonder if MS had something to do with this... Anyway, glad to know that I'm not alone in that rollercoaster

    • Lisa Emrich
      Health Guide
      Sep. 01, 2009

      Hi Mel,

       

      I was hoping that some men would respond.  Laughing  I do wonder if it is the MS or the medications.  I very likely had MS in the years before diagnosis, but didn't start experiencing these wide mood swings until after starting meds.

       

      Do you find that your mood swings can happen at any time or do your emotions tend to fluctuate in...

      RHMLucky777

      Read More

      Hi Mel,

       

      I was hoping that some men would respond.  Laughing  I do wonder if it is the MS or the medications.  I very likely had MS in the years before diagnosis, but didn't start experiencing these wide mood swings until after starting meds.

       

      Do you find that your mood swings can happen at any time or do your emotions tend to fluctuate in larger cycles?  I'm curious about the idea that men have regular hormone swings.  Very interesting topic.

    • Anonymous
      Mel
      Sep. 02, 2009

      Hmmm... In my case mood swings can happen in a flash no wonder the time of the month. I'm perfectly find and they a grey cloud appears in my head for no reason.  It's a bit more intense before my periods but the worst happen when my Tysabri treatment is delayed. The more time it takes to get it the more I'm messed up.

    • Lisa Emrich
      Health Guide
      Sep. 06, 2009

      Hi Mel,

       

      Since writing this, I'm experiencing many more mood swings this past week.  Very interesting, or maybe I'm just more attuned to it.

       

      I apologize for presuming you were male.  Of course "Mel" could be short for Melanie or Melody or any variety of female names.  I'm truly sorry for that.

       

      Thank you for participating in...

      RHMLucky777

      Read More

      Hi Mel,

       

      Since writing this, I'm experiencing many more mood swings this past week.  Very interesting, or maybe I'm just more attuned to it.

       

      I apologize for presuming you were male.  Of course "Mel" could be short for Melanie or Melody or any variety of female names.  I'm truly sorry for that.

       

      Thank you for participating in this discusssion.  BTW, I've heard others on Tysabri describe that they really can feel when it's time for the next infusion.  Interesting.

    • Anonymous
      Mel
      Sep. 06, 2009

      You had a good guess. Melanie is the name. ; ) No offense there.Smile I should be more precise but since everyone around call me Mel... On TYsabri I could definitely "feel" it was the time for my perfusion. I'm off the treatment since last week (not efficient. 4 relapses in 5 months...) and now I'm curious to see how my mood will react...

  • ShirleyD
    Sep. 01, 2009

    This was an article I had to read.  Now I know I'm not alone in this symptom either.  I never had PMS either.  I was on Avonex at first and never had PMS symptoms. But after I switched to Copaxone I did have PMS symptom of mood swings.  I thought it was the MS.  But it makes sense it is the Copaxone.  I will not stop the Copaxone...

    RHMLucky777

    Read More

    This was an article I had to read.  Now I know I'm not alone in this symptom either.  I never had PMS either.  I was on Avonex at first and never had PMS symptoms. But after I switched to Copaxone I did have PMS symptom of mood swings.  I thought it was the MS.  But it makes sense it is the Copaxone.  I will not stop the Copaxone because of this. 

     

    When I was first diagnosed with the MS I had pseudoexasperations each month with my period.  I knew MS did something to my female hormones.  Now I know I am not alone in this.

     

    Thank you Lisa for discussing this.

    Shirley

    • Lisa Emrich
      Health Guide
      Sep. 01, 2009

      Shirley,

       

      I'm so glad to know that I'm not alone in this!!  Although several bloggers have discussed their pseudoexacerbations (or simply symptoms acting up) just before and sometimes during their cycle, I had not heard anybody talk about this in relationship to medication changes.

       

      If the nurse at Shared Solutions hadn't confirmed my question,...

      RHMLucky777

      Read More

      Shirley,

       

      I'm so glad to know that I'm not alone in this!!  Although several bloggers have discussed their pseudoexacerbations (or simply symptoms acting up) just before and sometimes during their cycle, I had not heard anybody talk about this in relationship to medication changes.

       

      If the nurse at Shared Solutions hadn't confirmed my question, I would probably have just thought this was going to be part of living with MS.  In a way, it is.

       

      I won't be stopping Copaxone because of this, obviously I haven't yet.  But it is really good to know that others experience similar.

       

      Thanks so much for your comment.  I did a little cheer as I read it.  Cool

       

      Lisa

    • ShirleyD
      Sep. 01, 2009

      Lisa,  It's funny how we can cheer about a chronic illness and symptoms.Laughing 

       

      I can't wait to see if others post on this topic.  I sent it to several MS friends.

       

      I enjoy your blogging.  I am fairly new to your blog.

       

      Take care,

      Shirley