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does anyone feel like since being dx they have been branded? we are being forgotten before we forget?
mish
Posted: Sunday, June 24, 2012 9:53 AM
Joined: 6/21/2012
Posts: 439


I met with the ssdi's tester, I had no idea that I could have asked   for mine.( I already had one done 2 weeks earlier) I was like- I faxed ssdi, my lawyer those results,  when we walked in to test #3 I gave the ssdi people the results and a copy of the last MD report.  I had no idea about this compassion thing  , would it be too late or would it mess things up if  I did it  straight under FTD  with the compassion thing? when I did  it was a r/o dementia  cognitive dis. nos and memory deficits. (with alot of physical  stuff)     any suggestions would be so helpful.  this lawyer is as useful as a went, soggy noddle.
mish
Posted: Sunday, June 24, 2012 10:04 AM
Joined: 6/21/2012
Posts: 439


honestly,  if this were another illness  ie. aids,or cancer and people said the things   to them like " you don't sound sick, you can't be (I I would love to know how we are "supposed to sound)  like pavorotti or  a redneck?   I mean really?  and how are we SUPPOSED to look like?   big bertha or some wrinkly looking person that cant match to save their lives? 

point being we would have commercials with celebrities discussing the importance on awareness and education.    and how ignorance and comments  hurt. 

maybe that is  an idea right there.   ??????????!!!!!!!!!!!

  


mish
Posted: Sunday, June 24, 2012 10:36 AM
Joined: 6/21/2012
Posts: 439


MIL are usually  DQ's. and their baby can do  no wrong.  I'll  trade you??????lol no really no just kidding. ???

I  saw an old "friend" yesterday at the fruit stand (there''s your sign, right there) 

I was buying fresh tomatoes -got to love them with fresh basil and fresh mozzarella!

anyway back to the point, all of A sudden I hear "Michelle!" I turn and its this woman talking fast saying how much she misses me, am I done  being a hermit?  then she said and  here's the kicker-did they (the md's) finally figure out whats wrong with you  I know you said Dementia but  look at you - so young and pretty, there is no way  you have dementia, that is for people  in their 70's what what do you really have?  Now- its the summer, I live near the beach and I am at a fresh veggie fruit stand on a sat.  yes people are there. this woman is loud!  I have not been able to get one word in.  I have not seen this person in 2 years.  out jumps the devil!

 I in return say, yes I still have dementia,  hasn't gone away yet  as far as I know.  and  its not for people in the 70's and 80's.  that is  just plain ignorance. and I picked up a tomatoe   and  said these are good, want one?  and she  almost ran to her car  and took off.  

so  whatever her name was,( because  I had no idea)  I did not mean to  be curt but I was just  shocked on  how brazen and loud she was in front of all those people.  and people wonder sometimes why I dont like to go out as often as I used to?


mish
Posted: Sunday, June 24, 2012 10:48 AM
Joined: 6/21/2012
Posts: 439


when I was first dx everyone and their mother called from the family. and asked how to help .....  now  the only 3 people that  call all the time  are my dad, my cousin and my aunt. that is it!    I know people are busy - they have their own lives, get that, but how  much is it to call once or twice a week???  that is     why I do feel  like I am   being forgotten sometimes. do I have to be in crisis  for someone to call  ?? 

that is sad if the answer is yes. I would  rather  not talk to these people at all,  it means they aren't real.  like the velveteen rabbit .  that is it!  that is how it is. the velveteen rabbit.  


mish
Posted: Sunday, June 24, 2012 10:50 AM
Joined: 6/21/2012
Posts: 439


I was thinking of doing a trial   how has your experience been?
mish
Posted: Sunday, June 24, 2012 11:17 AM
Joined: 6/21/2012
Posts: 439


my 12 year wedding anniversary is today.  and my husband has the heart of gold. but he is driving me LOCO !  for 2 years he was in denial. not anymore.  and that is good  now   he is in the bargaining to anger stage.

I just need HELP  trying to get him to stop treating me like bubble boy.  

     It is  driving me cuckoo!  I have tried  listening, talking,   the book  what if its not alzheimer's>the caregivers guide.   the part  about  not babying the person , suggested support group,  nothing is helping.   if I get up from the couch or chair he asks where am I going? I say China.  but really any ideas???  this man will not make  another week if he keeps this up! (just kidding).  but I do need help. 


Iris L.
Posted: Sunday, June 24, 2012 12:50 PM
Joined: 12/15/2011
Posts: 18508


nomemo wrote:

i agree, iris.  another thing that peeved me about the article re: the "quality vs quantity" thing....the husband was diabetic and wife wants to forgo his diet at times and let him eat what he wants....i'm not going to be a hypocrit and say that i, as a borderline diabetic, haven't done this, but since my ftd diagnosis i've done it less because 1) i don't want to get full blown diabetes and 2)if i were to get full blown diabetes it could exacerbate the ftd i already have with secondary illnesses, etc.  and who knows where that would lead? 

 

does what i said make sense?  i'm having trouble making sense lately.

 

i guess what upset me about my friend's remark was what i perceived as the lack of compassion that i was looking for with the "we're all dying every day" or some such thing. 


Nomemo, you make perfect sense.  Diabetes is a risk factor for Alzheimer's and possibly FTD.  I'm a borderline diabetic myself so I have had to cut back on my comfort carbs, even though I still want them (and NEED them sometimes).

Often dementia patients without diabetes develop a sweet tooth and begin to compulsively eat sweets and gain weight.  We all know that's not good.

The public don't make a distinction between early stage dementia and late stage dementia.  Let's face it, the public, including many professionals who put themselves out there as "people in the know", are IGNORANT about us!

We know people are ignorant, but we can't let their ignorance affect us personally.  We have enough to deal with without negative vibes from others.

Iris L.

Iris L.
Posted: Sunday, June 24, 2012 12:58 PM
Joined: 12/15/2011
Posts: 18508


Lisa428 wrote:

 

Being diagnosed in the early stage of any dementia is good.  You can learn more and make educated decisions about your treatment and your life. 

 


Lisa makes an excellent point.  In most cases dementia proceeds slowly in the early stages, so we do have time to educate ourselves and to make our own decisions and to work on our own treatment plans, including Best Practices and aromatherapy.  

Learning from the experiences and advice of members of the message boards will give us information that we won't learn elsewhere.

Iris L.

Iris L.
Posted: Sunday, June 24, 2012 1:04 PM
Joined: 12/15/2011
Posts: 18508


mish wrote:
  I had no idea about this compassion thing  , would it be too late or would it mess things up if  I did it  straight under FTD  with the compassion thing? when I did  it was a r/o dementia  cognitive dis. nos and memory deficits. (with alot of physical  stuff)     any suggestions would be so helpful.  this lawyer is as useful as a went, soggy noddle.

 

Is this a SSDI lawyer?  He should already know about Compassionate Allowances.

You can call the Helpline and discuss this with a Care Consultant and your attorney.

My personal opinion would be to include everything you want SS to know about your case now. 

Here are a couple of links:
 

http://www.alz.org/living_with_alzheimers_social_security_disability.asp#compassionate 

 
 

http://retirees-newsbasket.blogspot.com/2011/06/ss-complete-list-of-compassionate.html 

Also, one of the members included some useful information in another thread.  I'll look for it and repost it.
Here is the link to RussB's post.  It's in the middle of the page: 
 

http://www.alzconnected.org/discussion.aspx?tid=2147489167&g=posts&t=2147488437

Iris L.
 


Iris L.
Posted: Sunday, June 24, 2012 1:25 PM
Joined: 12/15/2011
Posts: 18508


mish wrote:

 and my husband has the heart of gold. but he is driving me LOCO !  for 2 years he was in denial. not anymore.  and that is good  now   he is in the bargaining to anger stage.

I just need HELP  trying to get him to stop treating me like bubble boy.  

     It is  driving me cuckoo!  I have tried  listening, talking,   the book  what if its not alzheimer's>the caregivers guide.   the part  about  not babying the person , suggested support group,  nothing is helping.   if I get up from the couch or chair he asks where am I going? I say China.  but really any ideas???  this man will not make  another week if he keeps this up! (just kidding).  but I do need help. 


Mish, Happy 12th anniversary!

Is your DH interested in joining the Spouse/Partner board?  It might help.  Also there is a chat every evening that is mostly caregivers. The spouses/partners used to have a special chat on Sunday evenings, but I don't think that is going on now.  Someone could start it back up.  Chatting is good, because it is real time, you can relate to others, and there is no record kept.

Iris L.

Geegee
Posted: Monday, June 25, 2012 3:31 PM
Joined: 11/29/2011
Posts: 514


W O W!!!  Mish, welcome!

Since I checked the boards Thursday morning, there has been a novel written here!  I've read for so long (hour+?)  just to catch up on all the "good stuff" here.

You have come to the right place for understanding!  We  have a great online support group and you will be a refreshing   addition.

I would write more but this the 2nd time I've tried to post a reply! (lost my typing when I hit the wrong key)!! 

 

I was dx with AD 2  years ago.  Now at 65, I'm responding well to Exelon Patch and Namenda.

Sorry, having trouble with the computer stuff.  Think my mind is overloaded and will do what is always recommended..."take a nap!"  

Welcome and talk to you later!   


Randy55
Posted: Monday, June 25, 2012 4:27 PM
Joined: 6/21/2012
Posts: 40


Hi everyone!

 

Reading everyone's post has been helpful. I'm impressed that everyone is facing their DX head on. My wife (age 53) was diagnosed with early onset dementia/Alzheimers August 2011.....she went into denial that she has a problem. She has slowly (without saying that is what she is doing) removed anything that brings it to her attention. She quit driving (as she got lost of couple of times and it scared her)....she quit going with a friend to teach gardening to kids at an elementary school as she said all her friend would let her do is sharpen pencils! She stays home all the time and so far doesn't seem to mind. She has a hard time communicating a thought (she could never write out the paragrahs that you guys have)....she has trouble even writing her name....she struggles going up and down stairs....she is now completely afraid of escalators...she repeats things a lot....she used to read a lot but doesn't do that much. She struggle getting dressed some...take her a long time to get clothes on right. None of what I have read here seems to indicate any of the same issues.

 

I take her places, cook, grocery shop, clean up...she still does laundry and will load the dishwasher. I feel like I need to get her some sort of medical help, but when I first convinced her to get tested (after getting lost in the car)....she was depressed and cried for three weeks straight after that. I really hate to tell her we need to go back to the neurologist...it will devastate her. Her friends have contacted me and said they would love to help me with her, but I don't like to ask for help and no one has actually come forward to take her to lunch or visit...a little dissapppointing. I feel stress, as I am her only social conatct and I have a full time job......I feel guilty leaving her alon so much. I really don't kow what to do.....just going day at a time.

 

 

 


Iris L.
Posted: Monday, June 25, 2012 9:52 PM
Joined: 12/15/2011
Posts: 18508


Hi, Randy, I responded to you on the Caregiver board.  I'm glad you found us patients over here.

I was diagnosed as cognitive impairment not otherwise specified and I have been on Exelon patch and Namenda for three years.  The meds do help me. 
 

My neurologist insists I don't have dementia.  He says my cognitive impairment is from lupus and depression.  One geriatrician I consulted told me I did have dementia, in Sept 2010.  When he told me that I went into a deep depression which lasted for about a year.  Unfortunately I am still battling depression, it is up and down like a roller coaster. 

I spend a lot of time on these message boards and I have learned a lot from the other members.  The main thing I have learned is to KEEP GOING!  Life is not over yet for us, and there are many things we can do for ourselves!

There are many members here your wife's age and younger.  I am 62.  My memory problems began at age 37, although I had no diagnosis at that time.  

One aspect of dementia is that it can proceed slowly.  Our goal is to remain in the early stages as long as possible. 

You mention your wife is in denial.  Many dementia patients have anosognosia, which means they are unaware of their disability.  This is a factor of the brain damage caused by the dementia, it is not denial.  They can't help it.  Here is a link to an article that explains it: 

http://alzonline.phhp.ufl.edu/en/reading/Anosognosia.pdf

Please keep reading and posting.  Please write back and let us know if your wife is on any medications. Do you think she can join us here?  We would love to meet her.

Iris L. 


mish
Posted: Tuesday, June 26, 2012 11:19 AM
Joined: 6/21/2012
Posts: 439


Ir is- the  way "professionals" treat others and misdiagnose  people   urks me to no end.  so I am sure they do all of us.  One  "person"  was so cruel in her evaluation of me  I was blown away.   After  years of testing and being mis diagnosed.   Here comes this woman who only spoke to me for for a very short time. She  was more stuck on  how many electronic cigarettes I smoked than anything!!!!!!!!  she did not administer or sit in on  my neurotest. yet she had plenty to say. she kept using the word inconsistent through out the entire report.  that I  did  better on some parts  of the tests and not others?  (sorry lady) and that sometimes I became tearful and frustrated when I couldnt     do the  whatever tasks. again ???? so even though all my scores went down dramatically in one year. her  recommendation was to get a to do list. (I already    told her I have lists and boards and gps all over  and they dont do it. ) so that was it.  She  said I did not perform like I should have considering my education level level and this was inconsistent (I hate this word now!)   and I   became frustrated   at times. you think???? so all I got from her was  a to do list.  maybe doctors should take into consideration  or think-why is this person frustrated and tearful?  instead of    sounding judgemental in the eval. like she did and she did but I can't remember it all.  why  not  ask what is going on in their lives to  have that person act that way? is it   being   ping-ponged to so many md's  so many times? without any answers and  given tons of pills for god knows what. or hearing " I have no idea what is wrong with you  I will see you back in a month"

WHY  should I come back in a month when we are wasting  each others time and my money???? why do MD's treat people like guinney pigs-  prescribing them pills to cure a dx of what they do not know????? what so then there is side effects? here take another pill for that? I mean really?   if doctors would just listen, take the time to meet with the family, do tests  and stop stereotyping what someone with an illness SHOULD look like or sould like, maybe people with this  will be cared for earlier.  


mish
Posted: Tuesday, June 26, 2012 11:22 AM
Joined: 6/21/2012
Posts: 439


I am so sorry for what you are going through.   Here for you.
Iris L.
Posted: Tuesday, June 26, 2012 4:12 PM
Joined: 12/15/2011
Posts: 18508


mish wrote:

why do MD's treat people like guinney pigs- 


Mish, it is SO important to find a doctor and preferably a team of doctors who are competent and who will listen to your concerns. 

I have gone through more than twenty-five doctors in the past five years, searching for answers for my cognitive decline.  I finally am getting some answers.  But it takes persistence and LOTS of motivation and not getting discouraged.

I credit and thank my fellow members for their encouragement, especially when I was at several low points.

When you feel discouraged, please come here and let us know.  We will do our best to help you stay strong.

Iris L. 


mish
Posted: Thursday, June 28, 2012 8:31 AM
Joined: 6/21/2012
Posts: 439


that is hopefully over. I  just really hope that  due people that sound and act like us are speaking out- the public will realize that there is no  image anymore that fits the criteria for dementia or alzheimer's.  the testing is not black or white . intelligent people are dx'd latter due to the fact they have more detours in their brain to get them where they want to be.   Yet they still have  it.   My whole point was  that social workers, MD's etc.  make the mistake of  placing judgment, labeling,   and  all of our other experiences more difficult for us to get dx'd earlier, treated earlier and to  be with ourselves and others longer.
Mimi S.
Posted: Thursday, June 28, 2012 8:40 AM
Joined: 11/29/2011
Posts: 7027


Mish,

So true.

 

That's why I have so much hope for biomarkers such as the spinal fluid exam or the Pittsburg compound PET scan.It's there or it's not.

 

And your also right. The more intelligent one is, the more has to lose before becoming deficit on the regular scales. The more intelligent one is, often the better the coping skills. The coping skills show up in scores on the test and the coping skills one uses to maintain one in everyday life.


mish
Posted: Friday, June 29, 2012 5:36 PM
Joined: 6/21/2012
Posts: 439


after years and  I means years! i think/feel I have a guy that knows what he is doing. he is the one that finally said no, it was not sleep,  or lack of ....  it  is this. He takes  time to talk  to my dad and mom. he checked in on me after my spinal tap  to see if  I was ok.
mish
Posted: Friday, June 29, 2012 5:49 PM
Joined: 6/21/2012
Posts: 439


ever feel like you are  here but not? cant do what you want to  do?     I  get so tired sometimes and have no motivation. just tired. and some people who mean well  say  " well you just need to get out and  you will feel better!"    " you can't stay in, that is what is wrong"- I want to scream sometimes-  ok  I want to  live my life- helllloooo?    it is not that easy  for me to  get up and going-     I know I need to get out, I know, i know . but  sometimes I cant.     this is  a not Mr. Rogers show. (thank God)  I  feel like I am missing out on everything but sometimes I am just so tired and    I have no energy and sometimes I   get depressed  because of that, it  is like a  chain reaction.    I am  just sick and tired of being sick and tired.
RussB
Posted: Sunday, July 8, 2012 10:01 AM
Joined: 1/23/2012
Posts: 25


To tell or not to tell…. That is the question….

 
One of the first things I had to deal with after receiving my diagnosis of Alzheimers was deciding if I should tell friends, family and others about my diagnosis.I feared the stigma of Alzheimers disease 
 
 I knew that with this diagnosis that I would have to leave my job of 28 years to fight my new battle against this disease. At my retirement party I stood up in front of my friends and told them I was leaving the company to fight a battle against a new challenge, Alzheimer disease. Well,  you could hear a pin drop in the room. I told everyone that we were here to celebrate and we had a great party. I still interact with many of my now retired former  business colleagues .
 
 At that retirement party is when I decided to be open about my disease with others.
 It comes easy now. I have done a great deal of public speaking on behalf of the Alzheimers Association, sharing my experience with  Alzheimers.. I am open about my disease and work to help more people to understand this disease and work to fight against the stigma of Alzheimer.
 
Being open about Alzheimers has made life much easier for me. My friends and family understand if I have a little memory problem and are not alarmed.
 
So, the question is, to tell or not to tell ?
 
 

klucky1
Posted: Sunday, July 8, 2012 2:22 PM
Joined: 7/8/2012
Posts: 6



klucky1
Posted: Sunday, July 8, 2012 2:23 PM
Joined: 7/8/2012
Posts: 6



klucky1
Posted: Sunday, July 8, 2012 2:23 PM
Joined: 7/8/2012
Posts: 6



Iris L.
Posted: Sunday, July 8, 2012 2:27 PM
Joined: 12/15/2011
Posts: 18508


Welcome, klucky.  Your post did not come through.  If you are using Firefox, our system is incompatible with it.  Can you use Internet Explorer or Google Chrome?  We want to here from you!

Iris L.

Iris L.
Posted: Sunday, July 8, 2012 2:29 PM
Joined: 12/15/2011
Posts: 18508


Russ, that is an important topic.  Please begin a new thread so that your topic can get the attention that it deserves.

Iris L.

klucky1
Posted: Sunday, July 8, 2012 3:12 PM
Joined: 7/8/2012
Posts: 6


Thanks,Iris-Now I'll try the comment section !
klucky1
Posted: Sunday, July 8, 2012 3:53 PM
Joined: 7/8/2012
Posts: 6


Russ-I finally can comuniciate my thoughts about ur dilema on wheather it is wise for u to say u have alz. dementia, or mild memory difficulties. I would say 4 u to always have a open mind to everything,includeing the ?'s u ask yourself. If u tell someone u have been diagonoised with anything, says alot & whether its mild,sever, alz.,dementia,1,2.3,4,degree's & so forth. Thats why I always try to keep an open mind to possibilities to anything-enough of me-now your question as to telling other people ,the people will take it, hopefully,with a clear mind & think anythings possible now
Charlier
Posted: Sunday, July 8, 2012 8:17 PM
Joined: 7/8/2012
Posts: 1


I can surely sympathize, Mish. I admire you for your struggle. I read some of the replies here and feel a combination of alarm and relief. Since taking Aricept (I am free of side effects) I am more articulate and can write more 2 or more emails a day, and can hold my own in a conversation (and usually enjoy it). People are at either extreme: they want someone to live with and take care of me or they don't believe that the diagnosis is correct. Some even laugh it off. I tell myself that I might approach people the same way if I were as ignorant about early-onset as they are. Prior to last month I thought that just about anything would explain my cognitive problems BUT Alzheimer's. It just didn't seem possible when people brought it up.
mish
Posted: Monday, July 9, 2012 9:55 AM
Joined: 6/21/2012
Posts: 439


I  could not stay on arricept for the life of me.  but  I  guess it really doesnt do  much  for FTD anyway.  so, I see the MD this week and see what  he has to say with a new med.  I am happy for you  and the luck that you have had. cudo's!  re. reactions, I guess people dont want to believe it-denial or can't believe that someone so young can have it. And it might be a scared  thing in there too, could it happen to me if it happened to her?

Sometimes i think I was better off not knowing, I used to be so bubbly and easy going and full of life and  I am not anymore.   Maybe I was better off  just   doing what I was doing and  letting nature take its course.  (I know I will probably get alot of flack for that statement  but  it is what it is)

re. to tell or not to tell- every situation is different.

thanks Charleir

what  is going on with you? how are you holding up?  hope  everything  is ok.

 


Iris L.
Posted: Monday, July 9, 2012 11:32 AM
Joined: 12/15/2011
Posts: 18508


Welcome to our online support group, Charlier.  I'm glad you're reached a level of acceptance.  I hope you continue to share with our members.  Please feel free to begin your own thread and post any questions or concerns you have.

Iris L.

mish
Posted: Monday, July 9, 2012 12:24 PM
Joined: 6/21/2012
Posts: 439


You are so helpful. thank you
nomemo
Posted: Monday, July 9, 2012 2:50 PM
Joined: 3/21/2012
Posts: 439


to know or not to know...to tell or not to tell.  i can only speak for myself.  for me, there was no question that i wanted to know what was going on....did dementia or ftd ever cross my mind, no way!  i just knew that it was more than just walking into a room and forgetting what i went in there for....more than opening the refrigerator door and wondering what i opened it for...more than forgetting where i put my keys.  for me it began when i would look at common household items and either not know what they were, what they were used for or going blank all together. when the blank moments started, i began thinking i was having petit mal seizures.  i spoke to my pcp and he was a little blase' about the whole thing, but said that if i wanted to pursue it, he would order a cognitive eval....and it all went from there.  that was the to know or not to know.  re: the telling:  well, i decided against telling my family right away because i knew they would blow it out of proportion in either direction....either thinking i had the cold or flu or thinking i had a brain tumor and was going to die at any second.  and i didn't want anything to get back to my mom in another town until i had a chance to talk with her myself.  i have to tell you that they chose both ends of the spectrum!  but once i convinced them that i'm not on my deathbed...i've hardly heard from any of them.  i did choose to tell my co=workers because my outbursts at work were becoming more frequent and more intense.  i felt that i needed to let them know that it was this disease, not me, yelling at them and to please, don't take it personally.  i went to every co-worker in the office individually (12).  that was very hard, repeating it over and over again, but it's the way i felt i had to do it...it was right, FOR ME!  maybe not for someone else, but that's why we're individuals and we need to make individual decisions.  and mish is right about the aricept and ftd.  i found out through reading a neurology publication and on this forum (thanks iris!) that it is contraindicated for people with ftd.  i'll be talking to my neurologist about this at my next appt.
mish
Posted: Tuesday, July 10, 2012 11:57 AM
Joined: 6/21/2012
Posts: 439


On one  end-  I feel i never  wanted to know - the realistic  end  says yes i did-  I wanted to know  I wasn't loco,  I finally wanted to know what was up!  since I had evry dx under the sun.  i wanted a  answer- SO not the one i was expecting (none of us really are)  but  i have one- I know what I have, what to do and not to do about it  and  thats that.  cant go back in time.   I know,  we know- so we  go  foward- like the little steam train- "I think I can, I think, I can".

only a few people in my life are there  for me now.  I am very lucky to have them.  some people cant say they that,  always be grateful  for what you have and I am grateful for those  few very special people  that take time out to  call and TALK to me., the rest  can kiss my grits! lol

remember Flo?  loved her!


nomemo
Posted: Tuesday, July 10, 2012 8:44 PM
Joined: 3/21/2012
Posts: 439


haha!  i forgot about Flo and her "kiss my grits!"  love it!  i needed that chuckle today....my usual ftd headache got a little intense this afternoon....spent time in bed, dark room, ice pack on forehead and extra dose of ibuprofen.  fell asleep...ah, sweet sleep!  hate when it gets like this....i was trying to think of what triggered it...i did do some housework and laundry today and by the time i took the last hamper of clothes from the basement to the bedroom 2 floors up, i was exhausted!  never did get the clothes put away...will have to wait until tomorrow.  am feeling somewhat better.  i have an ftd headache 24/7 right above the eyebrows, but it gets really intense with concentration, thought processing, etc.  does that happen to anyone else and what do you do for it?  i'm already on depakote er which really does help.  i think it's just a matter of managing it, i don't really think there's anything else i can do when they get bad.  i try to always have a small can or two of diet caffeinated soda on hand in case they get bad.  learned this when i was in the hospital for lumbar punctures and nurses gave caffeine soda to me because of the bad headaches...if anyone has any suggestions, i'd appreciate!