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Thread: Help me show my family a link, a story, statistics anything please re: Speech

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    Default Help me show my family a link, a story, statistics anything please re: Speech

    Hello, I first would like to say that I will be grateful for any ideas, pointers to links would be great, etc. as really I am what I believe you call a lurker. I have tried to help on a few occasions but true to the problem I have, my answers are too wordy as are my questions, thus, not much support and I now realize my fault....

    Truly so much has happened to me in the last 4 years or so that it is pitiful if not a perfect example of the ridiculous cost of healthcare but I still like my plan...Anyway, so I am secondary, with a change in symptoms after a DVT and PE which actually very coincidentally came about after not knowing I had a UTI (Neurogenic bladder diag. in 2006 with intemittent cathing 4xday) but my move to new city in 2007 had yet to help me find a decent Urologist who would even do an exam (I suppose the initial Urodynamics in 2006 in my old town were thought to be enough, but when telling them you have your 4th new UTI, and no antibiotic therapy... not good. That was 2009 where luckily my horrible myoclonus calmed down but got Foot Drop... 2010 in the fall, paparplegia from likely MS related Transverse Myelitis and UTI just before, even though on permanent coumadin therapy, had a heart attack while in hospital for the paparplegia (steroids which I had before successfully and was to be moved to rehab next a.m.)... Saved with intervention through Angio and stented and balooned, etc. Long recovery but back to my AFOs or wheelchair of choice depending on distance...

    Hope that history 20 years now, last 5 being worst overall health helps in my question.... So I have always been the person on the car ride going back many years who couldn't just sit there and not talk.. People talk right?.. Anyway, I certainly had no prior "tangential" speaking issues as I retired from a job where I was a highly positioned IT manager and traveled the country teaching software always rated higher than my peers.... Here's where I need your help desperately as I am falling to pieces.....Apparently now, I am the brunt of my families jokes and I can only think that based on my background of success that this has to do with either MS (spinal, very little brain involvement) but 20 years of CNS depressants seems to me could be culprit..

    2009, I requested Neuropsych testing as I knew Short term memory was a problem. Analysis (9 hours right) was that then age 49, compared to those my age with MS, Short term memory 60% worse (don't know why results were related to me as statistics....Dr. says she was more concerned about my processing ability (told me how I should have been able to draw that picture she showed me in a certain way for example (anyway 90% worse than cohorts (i.e., 49 yr old females MS, etc)..And Oh by the way, you are depressed and have been for a while.. Sort of why I requested the Effexor XR 10 years ago when I left my job as I need and love work but she said I needed to talk to someone...."Dear Doc, my family are all mean people.. no seriously they love me but I have always been the type to let people walk all over me without saying anything and since I've bottled that up inside for 20 or 30 years, my therapy was to upon the next ocurrence, point out to each person that I will not be spoken to that way again.. Sorry family but it's you.. That's not fun and didn't go over well... Yet they do love me and drage me along to any vacation, etc. they can unless of course as my older sister said when I found out they would go to NYC wihtout me for my GodDaughter's 21st birthday at Christmas time (how I love those museums but we're talking MY family)... and I was told.. You don't party or go clubbing so we didn't ask you...and besides when you went to Vegas, you got mad (yes I went with 10 married women for my birthday)...when your friends were with other men.. Wow have priorities changed? No not mad dear sister, just very dissappointed as I chose to raise 2 kids alone hoping that around age 40 when youngest in highschool, I would date, but MS decided to be my partner... As you can see I am hurting quite deeply... but it's really the making fun of a symptom (if it is one and this is where I need help)

    Well, someone whose family would tease and talk about their sister, daughter, mom's ridiculous need to speak constantly (getting off track and forgetting things they understand), but feel okay to make fun and laugh at my inability to shut up basically. Yes I talk to my dogs (3 of them at home with me since I offered to help) and love those dogs and if a person was to tell me that they would sit 8 hours per day and not play with, throw balls to etc., etc., their pets while not speaking a word (good boy, love you... etc., I would call Cold) Plumber told my son in law that I talked to dogs all day... For shame!!! Well, last straw was son-in law who has been good to me in so many other ways, let it slip that my own father who I adore and think of constantly (was such a wonderful husband to my Mom and a great dad), on vacation went along with and brought up examples in the laughing session of "she just can't stop talking"... I tried to tell them I can't help it and the deviation from the subject at hand is something I can't help.. I do note my embarrassment when posting to facebook for example (I use the Siri tool to talk into phone since I can't use the little keys) and speaking a subject I find has one using more words than typing into the little box and many times I see my posting (an answer especially) is horribly long...

    So, no one brought up a need to frequently speak as a fault that needed measuring at my Neuropsych test and no depression would cause that that I can find.... My daughter who is a social worker at a Nursing/Assited living facility and now knows everything of course, says that my rapid and never ending need to speak is not caused by medicine....okay she's not a doctor or an RN but...

    Help me as I have searched and searched and I have noted only in a few letters from one doctor that I am a bad historian due to my tangential speaking nature but that means "I'm basically all over the place" and I would agree but the complaint I'm hearing is that I just speak and speak, etc.

    Please anyone who has had a similar problem, I am crying every day as I really don't see the humor and I have to believe that if I could sit through hight level meetings only speaking when spoken to and stay on task running a huge IT department, that some of my drugs have affected me... I have to believe that it is drug related as the neuropsych even noted that my short term and processing problems most likely are (certainly one MRI had a good number of brain plaques but they are not active at all and the spine has always been my issue)... So please allow me to list what I have taken over the years and take now and if anyone knows of a Medline article, MS site article, Neurology article to help me show my family why I can't help this, please I beg you to help point me to this information. Even if article/link/etc. only refers to CNS depressants in general, I know that would help. Imagine the people who use to respect you so much treating you as a 5 year old and then forgetting you are an adult who will likely hear by mistake or someone's cruelty about the laughter everyone has had about your speaking....

    *So, 1993 Diagnsosis after 2 years , Given Tegretol (only about two years taking ) and Klonopin about .5 3 X day and as high over last 20 years as 5 total mg per day.. take 3 per day now
    *Very first center to start Betaseron so I got it in 1993 and took til 1997 (Moves had a lot to do with medicine changes)
    *Somehwere in 1997 took Baclofen, did not handle well thus the reason I am given Klonopin (works better on myoclonus anyway)
    *Oral Steroids on 3 to 5 occasions from 93 to 2000 with Decadron added as "try it" in 2005 and it worked I think better than IV solumedrol
    *Vicodin for 6 months when symptoms got bad about year ten (bad choice truly as it was the neurogenic burning pain)
    *Neurontin for about 2 years for the neurogenic/dysthetic pain along with the a symptom when first active (a very mild then myoclonus) coming back pretty bad and getting worse
    *Swtich to Avonex for 2 whole shots.... then Copaxone for 7 years, Imuran (bad new doctor) for two years and now Copaxone again for 2 years so far
    *Tompomax replaced the Neurontin sometime in 2002 or 2003 and took Topomax titrtating up to 400 Mg for 7 years as Docs desperate to help the myoclonus which would jerk me out of wheelchair
    *EArly osteoperosis from steroid use so tried all the various horrible tasitng quarterly or monthly drugs, now only taking Calcium plus D and Super B complex
    *Bone pain got bad so was given Lyrica in 2008/09 some time for that up to 150 mg per day (recently quit that as fear of all the CNS drugs has me concerned and spoke to doc first)
    *Oxycontin yes daily, started regimen in 2003 after 2 years of percocet and the ups and downs of when when when.....so neuro of 5 years history and trust with me then switches to 40, 20 , 40 Oxycontin
    *Oxycontin 80 mg in 2006 and has not changed still take it two times per day
    *myoclonus rearing it's very ugly head about 5 months ago, reminding me of how horrible it was for 7 or so years recently and put on Zanaflex (makes me very very tired) but better than jerking out of chair 4 mg 3X day
    *have taken Provigil and between one of hospitalizations and doctor switch, stopped
    *had recent sleep study... luckily no sleep apnea of throat but Central sleep apnea (from brain) could be drugs he says (offered Nuvigil) form of Provigil and now up to 250mg but now up all nite too often
    *Effexor XR 75 mg for mild depression (required for Betaseron users but I wanted it because I had to leave the most awesome job)...note my neurologist of 9 years insisted on my retiring due to rapid decline
    *Macrobid preventative antibiotic for all the UTIs I get for 2 years now (primary insisted after heart attack hospitalization) and TM
    *Generic Synthroid off and on based on TSH numbers (have large goiter with blood flow thru) also took it every day for two years as one doc insisted it would help shrink goiter..
    *Lisinpopril (alpha blocker I think) added after heart attack Fall 2010
    *Prvastatin (as heart attack caused by genetic mutation of some gene that is suppose to reduce or level off statins (something to do with high cholesterol which I don't have normally, threfore genetic testing
    *Coumadin (blood thinner for my Factor V Leiden mutation) turns out this is very common mutation in blood (causes many miscarriages) took 6 mos after 1st DVT in 2005, and permanent now after 2nd one
    *Plavix (intermixed sometimes with coumadin but more of a platelet thinner had to take at least 6 mos. after heart attack but too much thinning s let me off but must take one baby aspirin day
    *Byostolic (Beta blocker first thing given to me about 3 months before heart attack when I used my little CVS machine and made record for doc.
    *Neurogenic Bladder - have recently had my second Urodynamics study and urologist is putting me on Flomax meant for men with prostate issues but somehow it's suppose to help me pee more at a time
    *Amitiza - this is for severe constipation but not given for my neurog. bowels but during colonoscopy, which didn't work, found to have "tortuous colon" on right side basically scope stuck (how do you gently say not stuck because I failed my duty in cleansing but stuck because of the way my bowel is twisted... surgery maybe someday but right now I have too much else to worry about and have to self extract anyway...
    *Also in 1993 after initial tegretol, replaced that with six or seven years of carbatrol (very smiilar I believe)
    it is sure that I have forgotten something I took at some point but the truly long term drugs I worry about are the CNS depressants and are the Klonopin, Topomax only replaced 2 years ago with addition recently of Zanaflex, Oxycontin,

    Seriously, I would have said up to five years ago that I had the most wonderful family and they would still do anything in the world for me but truly, after having explained so many times about the pain it causes to laugh at a symptom, they insist (as apparently with generally over achieving people, they are all doctors.).. what I am saying about drugs causing it can't be true but they do believe the short term memory and processing issue can be caused by drugs. And truly if I was to say that I had someone on the board here share a story similar, I would be laughed at further so this is why i requested a link, a statistic, research study paper anything... or please if you know any other reason, please share and for my own sanity, please share your personal story if this is something you go through as I will take it seriously!! Thanks to anyone who can help me....

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    Hi Doggygranny.:) Welcome and thanks for coming out of hiding.

    I read your post and think I understand. You used to work and be active and raised 2 children and now the family says you talk to much- irritatingly so. Is that about right?

    First, your daughter is wrong. Drugs do do this. It happened to me on CNS stimulents, Provigil and Cylert in particular. It also happened to me on Neurontin. On the Neurontin, I couldn't let anyone get a word in edge wise- I was talking so fast, I would forget what I wanted to say if I didn't get it all out. So, instead of conversations, I was talking in monologues- long ones.

    Another thing to consider is the reaction of all the drugs you are taking together. One may potentiate the other.

    And lastly, there is a well known MS symptom of crying or laughing inappropriately. I think you touched on that. That is call psedobulbar affect or PBA. There is a drug that helps if it is interfering in your life: nudexta.

    I hope this helps some. Others will add to it. I do hope things get better for you- you have had many difficulties.

    Best to you,
    ANN
    Last edited by stillstANNding; 10-01-2012 at 11:45 AM.
    There comes a time when silence is betrayal.- MLK

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    Hi doggygranny,

    I'm sorry that you've had so much trouble, and your family definitely isn't helping.

    I don't have a lot of know-how in neurological and psychological disorders, but compulsive talking may be a form of OCD or obsessive-compulsive disorder. Have you ever been to a counselor or psychologist about the problem? There might be some help there.

    Sometimes it takes a while to get hooked up with a helpful, understanding therapist but if you keep at it, you should be able to find one.

    Meanwhile, there is your family's cruelty. Is there any way you can put some distance between yourself and them? Less contact with people who are being hurtful is often a good idea even if it means you have to pass up some opportunities for doing something enjoyable. How enjoyable is it when someone is poking fun at you?

    I'm not saying you should cut off all ties. But maybe find some activities that will keep you too busy to have much contact with them.

    And if you hear any more remarks, such as the one about you as a woman who talks to her dogs all the time, maybe you could let it roll off you. Join in the joke if you can. People find that unsettling but it's not always possible to do. Just say, with a laugh, "Yeah, I'm the woman who talks to my dogs all the time--they like to be talked to." Or something witty.

    So you'll probably want to work on getting the talking under control, if it means cutting out first one medicine and then another and seeing if that helps, or if it means finding a therapist who can work with you. And life would be much easier if you could develop a thicker skin so that what people say won't bother you. Why should it, after all? It's their problem if they're getting their kicks from taunting someone else.

    I hope this helps.
    Last edited by agate; 10-01-2012 at 01:00 PM.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    Quote Originally Posted by stillstANNding View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Hi Doggygranny.:) Welcome and thanks for coming out of hiding.

    I read your post and think I understand. You used to work and be active and raised 2 children and now the family says you talk to much- irritatingly so. Is that about right?

    First, your daughter is wrong. Drugs do do this. It happened to me on CNS stimulents, Provigil and Cylert in particular. It also happened to me on Neurontin. On the Neurontin, I couldn't let anyone get a word in edge wise- I was talking so fast, I would forget what I wanted to say if I didn't get it all out. So, instead of conversations, I was talking in monologues- long ones.

    Another thing to consider is the reaction of all the drugs you are taking together. One may potentiate the other.

    And lastly, there is a well known MS symptom of crying or laughing inappropriately. I think you touched on that. That is call psedobulbar affect or PBA. There is a drug that helps if it is interfering in your life: nudexta.

    I hope this helps some. Others will add to it. I do hope things get better for you- you have had many difficulties.

    Best to you,
    ANN

    I must agree 100% with the statement that

    "On the Neurontin, I couldn't let anyone get a word in edge wise- I was talking so fast, I would forget what I wanted to say if I didn't get it all out. So, instead of conversations, I was talking in monologues- long ones."

    Even when I was aware on the problem I could not control myself. I stopped taking the Neurontin. The Neurontin also just stopped working for me. I was unwilling to increase the dosage to higher levels. I do NOT like this drug. There is lots of negative comments about the stuff being overused for things not approved.

    I understand that the rest homes gave it their residents to make the more "social".

    Braindead
    Last edited by Braindead; 10-01-2012 at 06:48 PM.
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    You have gotten some good answers so far and I am sure you will get others.

    Just one thing I would like to add at this time - for some people (I realize not all) Provigil and drugs that act in the same manner keep people from sleeping well and can cause them to be somewhat agitated at times. I have noticed that some people on this board have used it with good results, but this might be something you want to keep in mind.

    Also, I wonder if there is one Doctor you trust a lot to go over all the medication you are currently on and try to see if any of it overlaps or if some can be cut back on. This would obviously be for the Doctor to decide. I have heard Oxycontin can cause some change in personality while on it.

    I definitely would pay attention to Ann and Braindead about the Neurontin. I have not taken it, but when thinking back I had a friend who did take quite a strong dosage and she talked a lot and some of it was skipping from subject to subject. I just thought at the time it was the way she was and didn't think any more about it, but now I realize that when she was able to get off the Neurontin she calmed down a lot.

    Sorry I can't give you any scientific evidence to back anything up.
    Virginia

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    Default Forgive for delay but forgot to reset email to notify of your kind remarks and help

    Also fantastic new feature of thanking people, I suppose this is done even if one does not respond... I appreciate all info and even though not long length, meds mentioned are very important starting points for searches (plus your own experiences) and I will do that tonite/tomorrow.... So also as I explained my new nature of not only speaking too much but my incredible long posts which I had in the past been chastised about ... Hopefully breaking this last one up with all my drugs and conditions didn't bother too much..

    So I have a few questions and comments
    stillstANNding
    First, your daughter is wrong. Drugs do do this. It happened to me on CNS stimulents, Provigil and Cylert in particular. It also happened to me on Neurontin. On the Neurontin, I couldn't let anyone get a word in edge wise- I was talking so fast, I would forget what I wanted to say if I didn't get it all out. So, instead of conversations, I was talking in monologues- long ones.
    Another thing to consider is the reaction of all the drugs you are taking together. One may potentiate the other.
    And lastly, there is a well known MS symptom of crying or laughing inappropriately. I think you touched on that. That is call psedobulbar affect or PBA. There is a drug that helps if it is interfering in your life: nudexta.
    Thanks for the above stillstANNding.. I hope my daughter is wrong and I have begged her to remember what her Mom was like (as in my job and my closeness to her and teenage and college friends).... As to the drugs, Provigil was only 2 or 3 years and I've been off since 2009, now the Nuvigil which is the extended release form has yet to really do much except keep me up a little too long so I am hoping that will work itself out. I am however interested in the Neurontin as a possible one in that I did only use it for a couple years starting in 2000 but I was on Topomax (my understanding that it is the 2nd choice or sometimes first after Gabapentin (Neurontin) is used.. .Many don't like the Neurontin weight gain so they switch. I don't know about the Psedobulbar or PBA as my emotions aren't really at highs or lows like that but I want to do a lot of research on the Topomax as I believe it damaged me in a number of ways.... Certainly it is known to cause Short Term Memory problems. My own sister (2nd of two and younger but 48) has spent the last year battling a rare form of migraine called Basilar ARtery Migraines and although headaches are certainly a factor, they never give the standard Immitrex as first of all, it is almost unheard of to start at her age since it is based on hormones in teenagers.. It is so bad that the headaches are not even as bad as the seizures which she gets after the auras which are nausea auras and the seizures are proven to not be epileptic which is how the confirm the diagnosis after MRI's, Lumbar Punctures, etc... When she talks about her deep fear when experiencing Aphasia (I may be using the wrong word here) but the inability to remember the word or even say the word you had on the tip of your tongue and has recently been almost in tears when telling me she couldn't grasp where she was at a time during the day.. Apparently thinking menopause as opposed to teenage hormones is causing this, they are telling her it will go away (I feel horrible for her but not one time have I said, Oh I know how you feel, happens to me all the time) because as many of us know, each person's symptoms are personal and hearing stories when requested as I do here helps but unsolicited advice...I've been there, sometimes is hurtful... But you would think that she of all people who for years has been embarrassed when I couldn't remember the names of her friends or what she said the day before... that she would understand how drugs can sometimes do more harm than good as the only drug she can take for her Basilar Migraines is "TOPOMAX".... SO I would not wish here illness on anyone but would have thought they would offer an I'm so sorry for criticizing you all these years. I was up to 400 mg per day and she cannot barely take 50 mg... And she's been tried on every other drug they recommend for that illness.. So my quest in searching will start with Topomax (Neurontin is in the same class of drugs) and now that I have had to start Zanaflex XR... I believe I better be very careful... So thanks for bringing up the Neurontin and of course letting me know that you yourself had the non stop monologue type of speech...

    To Agate, other than thank you for being here still as I remember that moniker:


    Code:
    I don't have a lot of know-how in neurological and psychological disorders, but compulsive talking may be a form of OCD or obsessive-compulsive disorder. Have you ever been to a counselor or psychologist about the problem? There might be some help there.
    
    Sometimes it takes a while to get hooked up with a helpful, understanding therapist but if you keep at it, you should be able to find one.
    
    Meanwhile, there is your family's cruelty. Is there any way you can put some distance between yourself and them? Less contact with people who are being hurtful is often a good idea even if it means you have to pass up some opportunities for doing something enjoyable. How enjoyable is it when someone is poking fun at you?
    
    I'm not saying you should cut off all ties. But maybe find some activities that will keep you too busy to have much contact with them.
    My daughter, after a long weekend of harsh words about my talking has agreed to see someone with me which will be helpful as she knows my sisters well and that brings up another issue ....the family cruelty... My Daughter and son-in-law offered upon moving to their brand new 3200 sf home (since I let them stay in my home for long enough to save a down payment) after their wedding to move me in and create a mother in law suite in the additional 1300 sf basement so being away from the cruelty is hard, another reason to have my Daughter come..I do so much for those kids (likely my problem in them thinking I am okay to say anything to and a money pit since my daughter is already with child after not even married a year and I want down in the basement soon so of course, I took out an extra loan which I really can't afford.. I give and give and truly want my old daughter back.... I did approach one sister about her own comments to me and could only do it by text...YOu see she is giving to a fault but will not accept anyone criticizing her and simply stating that maybe it's inappropriate to bring up my health and past etc., etc., is hurtful and wish she would stop... I had to ask her to stop after receiving a very foul language text using the word neediness (sorry wrong person)... Calling her is out as she has an admitted history of screaming and my text of course was too long as is my unfortunate nature right now and the remarks regarding that text were more cruel than the first. Sadly, I am with a husband and was divorced when my kids were 3 and 6 and so very proudly raised them alone in Philly til they were 10 and 13 (then to hometown in mid PA) and got them both to and through college.. But focus seems to linger around the one issue they think I can help..I realize that I need an outlet... I don't have Joe or Phil, Bob whoever to turn to who if it was anyone I found worthy or even dating much less marrying would have put a stop to this long ago.. And no I never dated as my Progression (that's what I call the symtoms that took me out of the workplace) took their nasty turn in 2000 to 2002 when I had to finally leave work and that was the age I promised myself as that young single Mom that I would start dating again (as in truly looking,, no bars for me)...

    This is where I should also state that I don't consider myself a victim at all of MS.. I do get angry that the blood disorders and other things heaped upon me (not neurogenic bowel and bladder) but the heart attack and DVT's blood mutations, all the unrelated stuff has taken a toll on confidence, self esteeem But no victim... I truly stayed away from anything MS related for a while as I wanted to make sure I was dedicating as much time as I could to me, understanding me and of course I found an awesome church, regained my faith and led an Outreach Ministry which touched me deeply for 3 years and was incredibly happy (that stopped after the Heart Attack as I can no longer drive and believe it or not I am still working on trying to find a way to be able to get up for CHurch on Sunday morning.. Saturday I don't have a ride but I do early sunday.. My general wake up time is 11:00 on a semi bad day and 9:00 on a great day and that doesn't fit my small Parish... But that is at least a goal which is important....

    And Braindead,
    Code:
    I must agree 100% with the statement that 
    
    "On the Neurontin, I couldn't let anyone get a word in edge wise- I was talking so fast, I would forget what I wanted to say if I didn't get it all out. So, instead of conversations, I was talking in monologues- long ones."
    
    Even when I was aware on the problem I could not control myself. I stopped taking the Neurontin. The Neurontin also just stopped working for me. I was unwilling to increase the dosage to higher levels. I do NOT like this drug. There is lots of negative comments about the stuff being overused for things not approved.
    
    I understand that the rest homes gave it their residents to make the more "social".
    Gosh, these Neurontin statements are OMG words of hope in an answer for me.. I have been told by one doctor that they are very very similar so I will pray that searches will lead me to the right info... If it's there on Neurontin (I believe considered an anti-convulsant but of course not why we take it)... Topomax is suppose to also be AntiConvulsant so I pray I find even a paper on Neurontin.. Your statements about monologue speaking is me... identical and Tompomax has lots of literature about affecting short term memory but I have to believe it's doing the same thing or a combination of perhaps my 20 years of taking Klonopin and the Topomax high dosage has done this so thanks so much

    Lastly Virginia,

    Code:
    You have gotten some good answers so far and I am sure you will get others.
    
    Just one thing I would like to add at this time - for some people (I realize not all) Provigil and drugs that act in the same manner keep people from sleeping well and can cause them to be somewhat agitated at times. I have noticed that some people on this board have used it with good results, but this might be something you want to keep in mind.
    
    Also, I wonder if there is one Doctor you trust a lot to go over all the medication you are currently on and try to see if any of it overlaps or if some can be cut back on. This would obviously be for the Doctor to decide. I have heard Oxycontin can cause some change in personality while on it.
    
    I definitely would pay attention to Ann and Braindead about the Neurontin. I have not taken it, but when thinking back I had a friend who did take quite a strong dosage and she talked a lot and some of it was skipping from subject to subject. I just thought at the time it was the way she was and didn't think any more about it, but now I realize that when she was able to get off the Neurontin she calmed down a lot.
    
    Sorry I can't give you any scientific evidence to back anything up
    Again, the Neurontin experience so I might search even this board for that and you mentioned personalities and attitude and ovbiously the combination of being alone for 24/7 for 10 years before I moved in with my Daugher and Son-in-law (that's hard til basement done)... would cause someone's personality to change. I was in customer service for a number of years yet am told I am mean to waitresses (NOT) but when I think about yes I could have been more patient and also Sisters say I am short with nurses, well only the bad ones but as a good person (and a Christian) I don't ever want to think that I have belittled or hurt anyone... I try and the last thing anyone would have called me 12 years ago and before was short or mean.. .As I try to remind people,,, I could not have had the jobs I had, teaching (questions can be redundant from people not listening) but I was awesome and loved it and miss it dearly... 7 promotions in 7 years at my final job.. doesn't happen to people who are agitated for sure.....But one very important thing you brought up is I did mention these fears to my primary (didnt' mention how my family treats me or the fears) but I talked about newly taking both Nuvigil and Zanaflex so primary went over all 22 pills per day (actually only 14 different ones) but we decided Lyrica was only started for some bone pain I have not felt for a while and I tried titrating slowly off of it and have had no problems. It was the best CNS depressant class of drug to go off since I didn't need it for the Myoclonus for sure and it was originally developed (according to her for the nerve pain from Fibromyalgia) but is being off-label (as in my case) prescribed as it's being found to do many things (she didn't go into detail) but will be seeing her in November and she, although not my neurologist, is fantastic at managing my 6 different physicians and their care and prescriptions so I may have her as a resource even if I have to get her to write a letter to my family if she will do it....

    Thanks to all of you so very much.. I now have so many better search words (Monologues great..... Neurontin Class drugs, etc).... Will update all and thanks so much for being here..



  7. #7
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    The South
    Posts
    549

    Default Drugs are responsible....

    Definately the drugs are the cause. For myself I take Hydrocodone 5/500 for pain and have taken it for a number of years. It definately causes me to have diarrhea of the mouth or the fingers. If you would break up your sentences into paragraphs of no more than 4-5 lines it would be a lot easier for those of us with visual problems (due to MS?) to read your post. The problem we have results in not being able to continue to read line after line without a break of the sentences into spaces between the paragraphs such as I have done here. Reading a long sentence causes me to have mental fatigue and forget what I have already read.

    Thanking you in advance of posting the next time and welcome back to the board. I do remember you from the past. Sorry you have such an inconsiderate family to live with. It's enough to have this disease to live with without having to be ridiculed because of the side effects of the medications. I don't know of a link to any site that could support my hypothesis but I am certain if you do a "google search" you may turn up something. Since I have gone off all the other neuro drugs with the exception of the narcotic and I notice the effects within 20 minutes of taking Hydrocodone look at what happens after you take the Oxycontin.

    Blessings,
    Gabriella
    Last edited by Gabriella7; 10-02-2012 at 09:08 PM.
    Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
    Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

    "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

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