Daytrana for fatigue?
 

Hello,

I took Amantadine several years ago, while it works for many, it done nothing for me.

I now take Provigil (400mgs daily). May I ask what dose of Provigil you are taking? I hadn't heard that Provigil is used for ADHD - but can understand where that may be possible. I've also heard that Prozac can be helpful with fatigue.

Provigil gives me no extra energy. In fact, I can take it and go right back to sleep. I really only know that it helps me when I don't take it. It does help me to "Function" - be able to put my thoughts together etc.

I've never heard of Daytrana. Having had the gastro bypass, it sounds as if the patch may work better for you since you have problems absorbing things when digesting them.

I know other meds for ADHD have helped many with fatigue (Ritalin, Adderal etc) so I suppose it's possible the Daytrana, being a med for ADHD, could help. My daughter has ADD (along with many other health issues) and now takes both Strattera and Concerta. She has taken Ritalin and Adderal in the past. Neither worked as well as the ones she is on now and the Adderal caused severe weight loss.

Sorry that I can't be more helpful - but I would suggest that you discuss it with your neuro.

Please let us know what your neuro says and how you're doing.

Hope you have a great weekend! :)

btw: Another day, and I understand - I still hate MS too! ;)

Oopsie...dosage, etc.
 

Hmmm....I'm replying to myself
 

Never heard of Daytrana - but I'm ready to call my neuro anytime I hear of a fatigue med.

:)

I tried amantadine, nada (or make that nod - a) and provigil helped for a while then quit on me.

My neuro and I talked about combining them, but A makes my stomach hurt - the only part of my body that is, so far, okay. I didn't want to go there.

I was thinking of something that would just up the efficacy of the provigil, but things that do so also up the side effects - like headaches, cog fog.


Grapefruit juice can boost efficacy of statins like 17x - that's a bit much, if it affects provigil the same way.

:eek:

But peppermint is only 2x. I may still try that for now, see what happens. I still have a few Pro's laying around.

If you try that other stuff, I'd like to know what you think of it.

Keri, I don't know when your last attack was, but I was under the impression it was very recent....and if that is the case, maybe you should allow your body to sleep when it needs to sleep. I am a big believer that your body heals itself while it is sleeping.

If I'm wrong...and it has been a long time since the last attack, the only two meds I'm aware of for sleepiness have been mentioned on this post.

I've tried Prozac, Amantadine and Provigil. Ritalin works the best for me.

Still in an attack (my first in fact)
 

I agree Bird, although I know this can be very difficult when we are trying to maintain our jobs or look after our family.

Keri, this in not like an infection, where we can just pop an antibiotic and it will be gone in 10 days. I think the NMSS offers some great advice in this regard:

"Many self-help books about chronic illness place a strong emphasis upon regaining control of one’s life, but a battle with MS must not become a battle against oneself.

If a person’s sense of self-worth hinges on being able to control all changes, then his or her ability to adapt to changes will be blunted. Sometimes the best way to improve a situation is to practice letting go of the need to control."

http://www.nationalmssociety.org/sit...msandemotions1

This is an interesting article on MS fatigue:

http://www.lamarfreed.net/fatiguems.html

Not everyone with MS suffers from fatigue and some only do when they are in an attack. I hope yours lets up when things start to improve for you. :hug:

Cherie

Keri, Your going to do what you want to to no matter what anyone is trying to tell you, that's okay, it's your body. And your new to MS and what can and can't be done. Good luck with your second round of IVSM.

I disagree with Bird ( sorry, Bird ;)) but my experience has been much different and had I sat around, rested and did nothing I would have been in a wheelchair very early on, no doubt about it.

I know you said you don't like to hear about someone elses experiences because you don't know what your MS will be like - none of us do no matter how long we have this disease. But I am going to tell my story - read it or don't, your choice :)

I was 25 when I had my very first exacerbation. I spent a few months in the diagnostic process, in those few months this is what my symptoms were:

Numb from the waist down including the private area
weakness in the extremities
Tremors in my hands
Extreme Difficulty walking, barely able to get around my home.
pain
L'Hermittes
Vibrations/buzzing from the waist down

I was diagnosed based on a positive LP, neuro exam and symptoms, every other test came back negative including the MRI but back then I also had other tests that are not part of the MS diagnostic tests.

When My neuro told me I had MS I thought, okay now I can get something to "fix" this, wrong. Instead my neuro told me there was nothing he could do other than steroids and to live my life as normally as possible.

My neuro also told me if I did nothing else, walk. He said that might be hard to understand since I could barely move but it would help.

Exercise/Physical therapy is helpful with MS and for fatigue

http://www.nationalmssociety.org/site/PageServer?pagename=HOM_LIB_sourcebook_exercise

So, that's what I did, walked. At first it was baby steps -to the mail box and back. Then I would sit down and cry - my legs felt like they were going to give out from that small effort, they were vibration/buzzing like crazy and I needed to sleep.

I continued this routine a few times a day with the same outcome and always with tears. Slowly, very slowly I started to notice I was increasing my distance.

I have mostly cervical spine lesions - spinal lesions cause mobility problems. With every exacerbation (except for one) has always severely affected my mobility and everytime I start all over again to walk - I start my mini walking while I am in the exacerbation.

I can't over do it, my body won't allow it.

My current neuro was shocked when he saw my c-spine MRI, shocked that I am still ambulatory without mobility aids. Based on my c-spine MRI I should not still be able to walk, at least unassisted.

I have never used the DMDs and have only used oral prednisone for my first 2 exacerbations, the rest I have waited out. I have had 6 exacerbations in 22 years - one exacerbation for each of these years -

1986
1987
1994
2001
2002
2007

My neuro does not want me on the DMDs.

Will your experience be anything like mine? I doubt it but you never know.

I would caution you to have patience. You have the rest of your life to deal with this disease.

Good on ya, Snoopy for pushing yourself to be your best. I agree this is an important part of the recovery.

I hadn't thought that Bird meant that a person should just curl up in bed and give up though :confused: . . . just that they should rest when they are particularly fatigued. My fatigue comes on hard at certain times of the day, and that is not the time for me to do anything taxing. If I don't rest then, it can get ugly. :p

Other times though, I am less fatigued and more amibitious. That is when I will tackle whatever needs to get done. :)

Cherie

Cherie, your understanding of what Bird meant might be right and mine wrong :)

MS fatigue can knock me on my butt and I have been know to hold down the chair for of a day, two or three but I have also found exercise to make a difference in my fatigue.

Some days I can be fatigued and decide to use the treadmill and feel much better afterwards. Other days I get on it and within just a couple of minutes I know I have to give in to the fatigue and relax, nothing is going to get done.

Another option to be aware of are sleep disorders which can be related to MS. A simple sleep study can rule out a sleep disorder.
http://www.nationalmssociety.org/sit...sleepdisorders

Let me clarify my resting point here, since I wasn't understood completely!

Keri,

MS WILL make you rest one way or another, if you don't listen to your body. YOUR BODY will tell you when to rest. This isn't your regular virus anymore. This is MS. You will learn to lay low or you will keep beating your head in and finding yourself hit with MS over and over.

I learned to listen to my body the hard way! After MS slapped me down and down everytime I was determined I was in control of me!

I have NEVER never said to crawl up and lay there. No, you get PT, you see the doc, you call the doc when new things happen, you REST when your body says "na nanny boo boo, you over did it!", you exercise your brain, you do physical exercises to YOUR CURRENT capability, you deal with the mental aspects of this through friends, minister or therapy.

6 weeks into this is early for you to be adjusting fully to this new disease. Keri, talk to your doctor about these concerns and feelings you are having. They are normal. NMSS and MSF have peer counselors who will call you for free. We, of course, are here too...Find a MS support group in your area.

You are going through a grief of your "old" self. And in the end you will say hello to your "new" self. It is a spiritual, physical, and emotional journey.

And I wish you peace.

I'm a wreck....
 

This concerns me.

As you have said your 6.5 weeks into this. It's waaaay too soon for your neuro to decide your SP, he may be right and you might be but in my unprofessional opinion he is jumping the gun on labling you and in the process scarying the hell out of you - like you really need that right now :rolleyes:

Have you considered seeking the advice/opinion of a second neuro. Believe it or not neuros are not created equal.

Ever since I started doing MS forums (which has only been a few years) I have tried to remember what it was like to be newly diagnosed.

There were so many emotions that I remember - fear was a big one, obsessed with the disease and discussing it to the point that my husband finally told me it was time to move on and do what we had to do to live our lives. MS had become my whole life.

Many here will tell you there is life after diagnosis, that life does go on and it can be a good life even with MS.

Keri, try and calm down. Nothing is going to get resolved quickly. If you choose to treat this disease aggressively then do so and know you can talk to us.

As far as playing the violin for you or giving a pity party - Don't worry I'm not very good at that. For the most part I am not warm and fuzzy when it comes to my responses :eek: :rolleyes: ;)

Keri, I wish I could reach out and give you a :hug: . . . and no, I'm not known for my warm and fuzzy's either. ;) I remember what you are feeling and experiencing like it was yesterday, and that was 17 yrs ago now. However, the truth is that many of us grieve and panic every time we go through another change, and we often go through many ups and downs through the years.

Snoopy is right that there is no way he could know your category as yet. In fact, he is dead wrong if he is suggesting that you may be SPMS, because that category begins with years in the relapsing-remitting phase, followed later by a more progressive course. Since you have not had any notable health problems until know, and have not been having relapses, it is actually impossible for you to be SPMS :confused::

http://www.mult-sclerosis.org/whatisms.html

If he meant PPMS, firstly he doesn't know his categories, and secondly he can not predict that for at least 1 - 5 yrs, when he sees what the disease does over time. Most people with PPMS don't have lots of inflammed lesions in the beginning either . . . so none of this is adding up.

However . . . if you do have PPMS, Tysabri has not yet been trialled on this category of MS, and it is currently believed that it is not going to be of any use to those people anyway. These drugs are for the "inflammation" that comes with relapsing nature of this disease, but it's an entirely different process (neurodegeneration) that goes on once we move into the progressive phase. A drug that specifically targets inflammation is just not intended to help with neurodegeneration . . .

Having said all that, I do not blame someone for trying any drug in the hopes that it might slow down this MonSter . . . I just disagree with a nitwit "specialist" scaring the pants off a patient to coerce them to doing it. :mad: In all honesty, my concern is for you only! He absolutely should have given you time to come to terms with HAVING MS first . . .

My story is actually quite similar to yours in that I had no family, was not married, hadn't even considered children yet, was career oriented, only 31 yrs old, and had just returned from 5 yrs overseas (had lost contact with most of my friends in that time). I was only home 2 - 3 months and had just started in a new job (a few weeks) when I was instantly paralyzed. So you know what I did when I found out it was probably MS?!? . . . I went out and found a very handsome German tourist and asked him to father a child for me, no strings attached. :eek:

So, about 6 months into this MS journey, and not yet recovered from the attack . . . I was unmarried & pregnant, they had discovered cervical cancer, I was anemic, and I had gestational diabetes. What a fine pickle I had gotten myself into. :D OH YEAH . . . and there were absolutely no drugs on the market to potentially slow this beast. :mad:

When I say I understand how you feel, and that you need more time to come to grips with what is happening to you, I really do speak from experience.

I've raised two beautiful daughters (one is almost 16, the other 12), and I have had some major ups and downs with this disease. I have had to learn patience and tenacity, and so have my kids.

Your neuro should not have scared you like he has, because he can not know where this will take you yet. Get another opinion.

One day at a time, Keri.

Cherie

Hi Keri,

I feel for you and what you're going through! :hug: You've had some great replies, and I only wish there was a really good answer. I can relate to what Bird, Snoopy and Cherie said, and all I can say is, this disease really stinks sometimes. :(

I remember when I first tried Provigil. It was like a double edged sword for me. It would give me brief spurts of energy, but increased my brain fog, so it was like I was raring to go, but only for non-complex tasks. Then I'd have the exhausted days following.

It took a long time for me to realize I couldn't go 90 mph anymore seven days a week. I come from a long line of nose-to-the-grindstone workaholics and I don't like being exhausted all the time.

I wish I could take Provigil or one of the other meds and keep going the way I used to. But I know I'd be having relapses one after the other if I did.

When I was first having my big relapses it was when I was still in overdrive. When I finally slowed down, the MS seemed to also.

I make myself get enough rest now, but I also have to eat well and exercise. Laughter and camaraderie helps a lot too.

I hope that by being here and sharing what you're going through it will help in dealing with all of this MS stuff that's coming your way.

I'll be thinking of you! :hug:

Keri, You are really a concern to quite a few of us. You asked us to listen. You got it. You also got major concern.

Snoopy is so right about getting a second opinion here. Be sure that this new neuro is a MS specialist or has a LOT of experience with MS patients currently. MS research has made a lot of progress in the last 10 years alone, so you need someone on top of MS....

Keri, as a psychotherapist, you know what you need to be doing for yourself right now. Stop. Breathe. Give yourself advice as you would a patient. The answers are in yourself.

If one therapy group is not for you. Call and ask for another. Find a local group. Keep looking. You will find a fit.

I wish you peace for today.

hmm...
 

The million $ question . . .

It must be hard to do this as a therapist, since you know the "proposed" coping mechanisms better then anyone. In fact, I bet you're gonna' see client's issues in a completely different light now after this experience? See, there's a good side. :D

No, but in all seriousness, that's one job I wouldn't want to be skilled in, if something like this happened to me. :rolleyes: :(

You know what? I am not a particularly religious person, but have always been spiritual. When they told me about the MS, while paralyzed and so sick, I begged for guidance many'a night. One night I got it, and I also got handed "peace of mind". It wasn't a "saved" experience . . . just the direction I needed in order to carry on my life in the same way (with the same non-descript religious convictions that I always had).

That's not to say that I don't lose sight of "faith" sometimes, but that's really what gets me through.

What will be will be. . .

One day at a time. . .

There's a reason for everything . . .

There's a lesson to be learned (so I don't have to repeat this the "next" time around). . .

A new purpose awaits me . . .

My skills are meant to help people in other ways . . .

Blah, blah, blah.

Ultimately, it's my faith (and wisdom) that I can get through every experience that keeps me going.

Cherie

I don't take anything for my fatigue. I have found that rest and/or naps are vital to my functioning and I allow myself that time to do so.

As a psychotherapist you know that fatigue and being tired are a symptom of depression. Depression is common in MS as well. Could some of the fatigue you are experiencing be depression as well.

You are dealing with a lot right now and I think it would be safe to say that mild depression is adding to you fatigue. Can you increase your anti-depressant at least for the time being? Can you take another one in addition to your current one?

As for your doc - I really don't know how he can predict your course with MS when you have only been diagnosed for a few weeks. My 1st flare was my worst, I was down for 3 months and was diagnosed as having a clinically isolated case of MS. I had one good month and then I had another flare at which time I received the definite diagnosis. And so began a year of flares every 6 weeks.

What is he basing his decision on? How did he determine that you have SPMS and/or PPMS? I was under the impression from my own research and reading that one is usually diagnosed as RRMS at first and SPMS and PPMS after there are indications of no periods of remission.

Bird and Snoopy were both correct; same ideas stated differently. Exercise is important and should be done everyday and it should be based on your limitations on that particular day. Diet, as I have found, is just as important. Although I do not fully follow it, the Swank Diet for MS has proven to be so beneficial for many MSers. I did follow it strictly for a couple of months and felt great. Then I broke down and ate some thing that weren't on the "diet" and felt worse.

Your emotional well being is important too. The more emotional you become the worse your symptoms are. The worse your symptoms are, the more emotional you become. And so the cycle continues.

Please take care of yourself. We are all here to help you along the way.