Tuesday, May 29, 2012

MS and My migraines

By Sherry Sunday, December 14, 2008

I would like to share my story.  Since I was 8 years old, I have suffered from headaches and migraines.  I am 47 now, and the years in between have been very hard and confusing.  At age 8 I went through all the testing and my doctor told my parents he did not know what was causing them.  When I got my migrain then, they gave me 2 ANacin tablets and something from my pharmacy called "Coke Syrup" that my doctor prescribed. They were different then, I would get so bad in pain I would vomit until it turned to straight vile.  They tappered off a little for a  while, but then I started gettin them again, not as often and little or no vomitting. I was around 26 or so and then the doctor prescribed me fiorinol, which seemed to work pretty good.  Then around 1988 I moved to Nevada and I had a hard time trying to get a doctor to prescribe fiorinol for me.  THey gave me motrin, then pain med and finally a doctor said, sure I will prescribe fiorinol for you.  About 8 years ago, I started getting the worst headaches and migraines.  As bad as when I was younger, but no vomitting.  I could be in bed for days, have the headache/migraine for weeks, with not relief.  Now, I have a chronic daily headachein the back of my head and neck which about two times a month turns into the migraine. None of those "Migraine meds" would work, the fiorinol seemed to help, but sometimes even that didn't work so my doctor ordered me Lortab.  I have been to see 4 neurologist including one in UCLA that told me he was 100% sure I DID NOT have MS. That was in August 2007.  In June 2008, my doctor had no idea what to try and do for me anymore, he called another Neurologist and begged him to see.  (He was not taking new patients nor second opinions.)  Stating that some doctors look at and see things differently.  He agreed. My syptoms were the daily chronic headache, memory loss, loss of concentration and chronic fatigue.  He did the normal test as well as ordered the MRI of my brain in a special machine. It was a T-3 MRI of the brain. All the prior MRI's I had showed a lot of lesions, but not up close and personal like the T-3 does.   On my follow up visit to my doctor, I went alone because I was so use to the doctor telling me he just don't know what is wrong, I didn't feel he would come up with any other answer.  Imagine my surprise when he said I did in fact have MS. I said no, and reminded him f the "Specialist" at UCLA, he said I know.  Then I said, but headaches are not a common symptom of MS, he said not usually but it is heard of. I said, OK, what do we do. In June 2008, I started taking daily injections for my MS. My husband gives it to me faithly everyday before he goes to work. THis medicine is supposed to help prevent further damage and to help stop the MS from getting worse. It does not help with all the symptoms.  Althought I take it everyday, I feel I am in fact getting worse. The headaches are still there everyday. I still get the Migraine at least twice a month, my memory and speech is real bad  and now I am having issues with the side of my head. Numbing and tingling as well as hurt to the touch. My doctor has order a round of Solumedrol to be given to me through IV over 40 minutes.  We will see if it helps.  This diease is very confusing. No two people suffering with MS have the same symptoms. I hear stories of people living 20 plus years with no problems and then others that are far worse than I even am.  MS to me is scary, I have no idea what to ecspect.  Sometimes I wonder if I really have MS or is it something else totally different.  I mean, 4 out of 5 doctors did not feel it was?  If there is anyone else out there that has headaches and migraines, or who has had a similar experience like I have, please contact me, I would like to hear from you.  I don't even know if I should do the IV steriods?  Lucky for me, I have a great husband taking care of me and my wonderful parents are not alive to see what I am going through. 

12/15/08 8:36am

Hi Sherry, What a beautiful name!  I go by smomdukes, but my real name is Sherry also, we are such lovely people.  Hone I know something about those migraines.  I have had them always.  Well I am going to make this story short.  I was eating two Goody powders at a time, and chasing them with a Pepsi, do not do that, it is not good for the lining of your stomach, very, ver bad!.  Well now I take Topamax for the Migraines, it causes weight loss Yea!!! I needed that so badly no complaints I was over 200 pounds.  I now weigh 155 it is better on my legs, and eaiser for my husband to pick me up when I fall which I do often Smile I take Beta shots every other day for my MS the Topamx does not bother it at all, but the Topamax really is a God send with the migraines.  My oldest daugther was blessed with the migraines, she also takes Topamax and it helps her.  I take one a day, she takes 5 her migraines are far worst than mine.  Talk with your doctor and see what he or she says.  It may be an option.  I hope I have been some help, and I hope that you feel better.

12/15/08 11:59am

Hi Sherry!  Yes it is a GREAT name!   Thank you for your reply.  I have actually tried the topamax but i started getting a reation to it.  my face, my eyes and my lip would kind of quiver....I had to stop taking it.  I knew about the weight loss so I was in fact hoping I could tolerate the topamax.  I do weight a little over 200 and I am so unhappy with my weight. I wonder if I could try it again and be able to handle it.  I take so many meds and vitamins.  I just stopped taking Lipitor because of my legs and I actually think it is helping my side of my head.  The doctor thought my head was from the MS and it still may be.  I take lot's of vitamins for my headaces and they have helped a great deal, but not enough to say I am good or anything.  I hate taking meds!  I take Copaxone for my MS, it is everyday.  the 21st of this month will be 6 months I have been on it.  But like I said, I feel like I am getting worse so I am not sure it is working.  In any case, I think I may be speaking to the doctor about trying topamax again, if it wors good if not at least It tried.  I am scared,are you? The side of my head and face feels so strange.  That is my latest symptom.  It makes my eye feel different, but no blindness or anything. Thank God!  How long have you had MS?  I guess we really don't know how long I have had it.  They did the first MRI like 4 years ago and the lesions were there then, but they did not think they "looked" like MS Lesions.  Who knows.....I am very lucky to have a wonderful hubby! And a "daughter" a 7 year old German Shephard, they both take very good care of me.!  I hope to talk with you again.  I so appreciate you replying.  And to know someone else does have MS and the migraines, it makes me feel a little better.  Have a great day! God Bless you!

 

12/15/08 2:12pm

Yes talk with your doc. before you do anything.  Right now I am having some problems with my blood pressure meds.  I go to the doc. next week they make one of my hands feel wierd at night.  So I am not sure if it is the MS or the meds, but we are going to find out.  My doc. often accuse me of trying to dx myself.  I take away meds if they do not act quick enough for me, hey I feel like sometimes, I know as much as they do.  Hey mosy of my doc know me by now.  I walked around for 3 months with a broken shoulder, they could not understand how, when they finally discovered it, they realized it was healing properly.  Now I do not recommend this to anyone.  The old say, "God watches over babies & fools" well a baby I aint.  Innocent  Hang in there they will find the right drug to end those headaches.  One of my nuero. gave me a shot in the base of my skull, I asked him for some of those to take home, he said no way.  But honey, it sounds painful, but it aint, and it worked instantly.  I would do it again in a New York minute.  Have a good day!

9/ 1/09 12:29pm

Hi momduke, I hope you get this post, I see it's an old post, I get the terrible headaches, have one right now, and the back of my neck, there are no words to describe, what were the injections the neuro gave you? I would like to ask my neuro, hope your doing better, hugs Lisa

9/ 1/09 1:02pm

Hello there!  Just wanted to let you know that I have been back on Topamax for about 6 months now.  I do have the face, lip and hand twitching but it seems to help with the Migraines.  Although I have hade about one a month.  I still have my daily headache. Cry  I also have not lost any weight with it as they say you do. Cry I was looking forward to that as much as relief from the migraines! Laughing

 

How are you doing? Feeling good? I have this stuff going on with my legs now! Seems like I am getting worse even being on meds. And as if MS isn;t enouhg. Going through testing for breast cancer right now. Along with genetci testing due to a family link!  Vicious cycle isn't it?  Well, hope all is well with you!
How are the hands doing?  They need to find us some help and real soon!

God Bless.

Sherry  

11/ 2/09 10:32am

Good Morning Sherry,Cool

Just wanted to check in and see how you are doing?  How are you feeling?  Still on your Topamax?  I have been on it for some timenow and U+I have not lost a single pound! Frown   Did the docs figure out your meds finally?   Have had a rough few months myself, but things are looking up!  I am in PT for my legs and working on staying OUT of a wheelchair! YEAH!  I thank GOd I have a wonderful hubby! Getting ready to go to the Eagles vs Chargers game November 15! I should tell you, I am an Eagle fan the hubby is the CHarger fan! LOL  It's all good! Going to stay over the border in Mexico for a few days with some friends traveling in for the game!

THen in December we go on a crusie with the one casino we play at here. Do you like to travel? I love it, specially cruising. I own my own travel biz.  We usually do a group cruise once a year.  Next year we are doing the BRAND new ship that is all over the news right now, Oasis of the Seas.  Man it is going to be awesome! 

 Well, I hope you are well and still loosing weight.  Which reminds me, what does are you on? I take 75 mg a day.  Doc is thinking about raising me. 

   

Anonymous
Lisa Weinberg
1/21/09 1:06pm

Hi  I am a 49 year old woman, dx. at age 21. I had terrible vertigo for years. that has stopped. always had left sided numbness and tingling. My worst symmptom is chronic daily headache, eye pain, face pain. I have tried fiorinol. i now take four vicoden a day. It helps some of the time. My doctor put me in the hospital and tried something called DHE intravenously. didn't help. I am now getting occipital nerve blocks in the back of my head.. It may be helping. anyone have experience with this? thanx. Lisa   516-445-8241     sweinbe6@optonline.net

Anonymous
Michelle
8/31/09 3:52pm

I also have M.S. and migraines that can last for days and days.  I completely understand what you are talking about.  My neurologist recently started me on Treximet which you take as soon as you feel the onset of a migraine and then again two hours later if you need to.  It doesn't always work, but I have fairly good luck with it.  I figure at least 50/50 and hey that's way better than nothing!  I'd love to give you a permanent answer, but unfortunately I just don't have one other than pain meds like Lortab and we all know how Doctors feel about that.  So I guess we just keep praying for a miracle.  Good luck and God Bless.

9/ 1/09 5:27pm

You know we have enough problems as it is with this mess called MS, but such is life, but we will be all rightWink  MS is so different for everyone.  Come to find out, I am such a dummy, I was taking too many blood pressure pills, I was suppose to stop taking one of the meds but being the genius that I am I continued to take one and that is what was wrong with my hand, real smartUndecided.  My back was hurtinm but it does that once a year, so that is over with, npow my knees are hurting, but I will get over it, such is life.  will be all right I have gone from 200 pounds to 138 honey I am offically "wheelchair sexy" Wink  A big part of that is also I no longer eat junk either, ( potatoe chips and dip washed down with a pepsi) my drup of choice!  sherry/smomdukesKiss

Anonymous
Anonymous
11/ 1/09 10:34pm

Hi Sherry my mom was diagnosed with M.s 20 years ago.One of her symptoms were migrane head aches.

She also suffered with alot of dizziness and muscle weakness.

 

It took the doctors along time to finally diagnose her, first they told her it was all in her head.Send her home with a perscription for a anti depressant.

 

From there many test followed, they actually ruled out M.s and Lupus.

Six years later they finally diaganosed my mom with M.s it was a shock!!!!

 

My mother is 73 and still living with the disease.It has been a very difficult road for her and my father.

She was also diagnosed in June with colorectal cancer.

 

M.S is such a terriable disease, my mother tried to stay positive and accepted her disability.

 

I wish you all the best !!!

11/ 2/09 12:02pm

Well here is the update on me.  The Topamax works great for my headaches, I get them this time of year because of my sinsus, but that is how it goes in my necikof the woods.  My main problem with my MS is the fatique, I do great in the morning, but it is the wheelchair in the afternoon.  I also deal with the foot drag thingie itis a bummerUndecided but such is life.  I am no longer working, but I stay busy with my crafts, I love crafting and giving them away, it makes people happyInnocent so I am happy!  I love photography, I will post some here I stay busy.  I am going to take a cruz one day, my husband and I.  Have fun, and be careful.  Yes the Topamax made me loose weight, I was wearing size 20 jeans now I wear size 14, my husband bought me some new ones Saturday, because the others were falling off, LOL LOL LOL  Take care, and have fun!  sherry/smomdukesKiss

Anonymous
My mom and her battle with m.s
11/ 8/09 3:44pm

Thanks so much for the reply.You are very positive which is so important.My mother

stayed  positive as well.

 

I guess excepting the disease and moving forward is all one can do.Glad to hear you have a great support system as well.

 

My parents have been married for 55 years so my dad is my mom's rock..

 

I think at times i have become paraniod thinking i may have M.s as well, because my mom suffers from it.Actually as far as i am conerned doctor's really dont know if this disease is carried on.

 

What is your opion on this. ?????

 

Anyways take care, stay positive !!!!

 

 

 

 

11/ 9/09 8:47am

I would not borrow any worry about it.  Do not borrow any troubles.  Just take it one day at a time.  There are more tragic things in life than MS.  So really we are blessed.  Sure MS may cause us to struggle some, but look around, there are those who struggle a whole lot more, so I am so grateful for what I have.    That is the way that I look at it.

sherry/smomdukesKiss

Anonymous
My mothe and her battle with M.s
11/ 9/09 9:48am

Thank you so much for your reply.Your positive attitude is wonderful.

 

You make so much sense, after reading your response i feel better, i think

i need to look at things alot different and be very thankful for what

i have at this point in time.

 

Even if i have the disease i cant change a thing, its all about excepting

and dealing with the challanges that life throws our way.

 

Yes how true ,things could be so much worse, my mom was diagnosed with

colorectal cancer in june.

 

She has gone through so much since then, two surgeries, radiation and chemo

more chemo to come as well.

 

She is still in the hospital as we speak, we thought she may have lost what mobility she had, but she is slowly coming around.

 

I guess when we look at the bigger picture we should be thankful for what we have !!!!

 

Thanks so much for making me realize that, it took a stranger to point that out.

 

Take care ....And stay positive  !!!

11/ 9/09 10:47am

Sherry, I look at life like the author Lewis Grizzard, he is now deased, but he said something that I will never forget, but I keep it in front of my mind at all times, now I cry sometimes, don't get me wrong, I use the shower theory, that is cry in the shower, let it wash those tears and sorrows down the drain, and you come out looking good, and feeling good!Wink  But Lewis Grizzard said, "Don't sweat the small stuff, it's all small stuff."  smile.  Have a wonderful day!  sherry/smomdukesKiss

Anonymous
Anonymous
11/ 9/09 5:29pm

Thanks good advice !!!!

 

Take care !!!!

Ask a Question

Get answers from our experts and community members.

Btn_ask_question_med
View all questions (1955) >
By Sherry— Last Modified: 09/30/10, First Published: 12/14/08