Any luck with Ritalin

Discussion in 'Fibromyalgia Main Forum' started by fonda, Jul 2, 2003.

  1. fonda

    fonda New Member

    Does anyone out there take Ritalin or something similar for fatigue? I want to ask my doctor about this....not sure what to say.
  2. Mikie

    Mikie Moderator

    Please read this article by Dr. Paul Cheney from our library. I could not find the one where he specifically points out the dangers of using Ritilan, but in another article on it, he said it can "fry you brain."

    I just posted his sister article on Klonopin which explains why our brains keep us from sleeping, cause sensory overload, and contribute to anxiety/panic attacks. If you read it, you will understand why stimulants are not a good idea.

    I did try Provigil because it works in a much smaller area of the brain and I figured it might be safer, but it did not work for me. Also, Dr. Cheney is an expert on CFIDS, but this info is part of the overlap between CFIDS and FMS and is pertinent to both.

    Dr. Paul Cheney Discusses Stimulants for Chronic Fatigue Syndrome
    by Carol Sieverling


    Editor’s Note: Following is a transcription from Carol Sieverling, one of Dr. Cheney's patients, on the subject of prescription stimulants for CFIDS. The discussion took place in an appointment setting with Dr. Cheney.

    Note from Carol Sieverling: Many ME/CFS specialists prescribe stimulants like Ritalin, Dexedrine, Phentermine, Lonamin, and Provigil. They can seem to give more energy, stamina and cognitive clarity (including lessening of brain fog). Dr. Cheney has certain opinions about these medications.

    Dr. Cheney: "I don't like Lonamin, because it is classed as a stimulant drug. And I am more convinced than ever that stimulating the brain of a CFIDS patient is hazardous . . . because the only justification for stimulating the brain is AFTER the condition is over with that hurt their brain in the first place.

    Let me say that again. The only justification for stimulating a human brain by a drug is AFTER a condition that hurt the brain is past, and now you're on the other side of that condition. Examples might be head injury and stroke. These are good examples of where intervention in the aftermath of the injury (or medical condition, as per the stroke) has been shown to be advantageous.

    However, if there is an ongoing problem, an ongoing metabolic disturbance, stimulating a brain that is being actively injured . . . while it might provide short-term benefits . . . it'll cause long-term injury. There are a ton of physicians out there, by the way, who advocate the use of stimulants in CFIDS patients to ‘help them think better.’ And I would ask those same physicians this question: would you stimulate an MS patient who has active MS? The answer is, ‘Oh, no, I wouldn't do that. They have brain problems.’

    I would then ask, ‘Does that mean that CFIDS patients DON'T have brain problems, and therefore, that's the reason you'll stimulate THEM?’ You’ll injure their brain further. It isn't because a stimulant might not help them in the short haul, it's the long haul effect of stimulating a brain that is injured metabolically. It tends to put more pressure on the brain that could hurt it because it's already suffering.

    Here’s an example: suppose you're a horse trainer. One of the things that a lot of people always argue about that is useful in training a horse to run, say, the Kentucky Derby, is whether or not to use the whip, to slap the hose on the rear end, a sort of stimulant to riding him. I would say (assuming the horse is healthy), this is an individualized issue.

    Some horses might perform better with a whip and not suffer from it. Some horses might actually perform worse. Some jockeys know the difference. Some horses you whip, some you don't. But, what if the horse was ill? Probably some sick horses WILL run faster when they're whipped, but you'll do them no favor – instead, you’ll probably put them in an early grave. And I feel the same way about stimulating the brain of a CFIDS patient. Why? Because they are not well brains, they are metabolically injured.

    And stimulants put more metabolic pressure on the central nervous system. They make the brain work harder when it already has too much to do. And that's the reason I don't like stimulants.

    And just as stimulants are contraindicated in MS and Aids dementia complex and other active brain diseases, they should be contraindicated in CFIDS, unless you believe that this disease doesn't involve the brain and is not injuring it. Or if it DID involve the brain, and DID injure it, it's over with [as in Phase III]. And the answer to that is [for Carol Sieverling, in Phase II]: the brain IS being injured in this disease and it's NOT over with.

    If you look at the other drugs you're on [Dr. Cheney is speaking to patient Carol Sieverling] in particular, Klonopin and Magnesium, they are the opposite of stimulants. They are actually brain protective. B12 is more of a detox agent. Kutepressin doesn't really effect the brain that much. So, I think what your brain needs is neuroprotection, not stimulation. If the day ever came, however, when this disease is essentially over with [as in Phase III for Carol Sieverling], you might make the argument that stimulating the brain might be beneficial at that time. My problem with you [Carol Sieverling] is that I don't think this disease is over with. Stimulating your brain will help in the short term, but it will shorten the life of your brain.

    Some people ask, ‘what about quality of life?’ Would you rather have 10 years of the benefits of stimulation, and then lose your brain? Or would you rather have 30 years of an operational brain, but maybe one that doesn't work quite as well? Those are tough questions."

  3. elaine_p

    elaine_p New Member

    My doc put me on Ritalin 2 years ago (2.5mg twice a day). I had just started a work attempt (that's not why he had me try it).

    It's POSSIBLE it allowed me to stay at the job longer than I otherwise might have. But it also took me AT LEAST 6 months to recover from a 4-month attempt of half-time work. (Actually, the first several weeks were 12-16 hours, and the last 2 were only 15.)

    From what people here have said about Provigil, it might be a better alternative, it apparently doesn't affect the brain the same way.
  4. lucky

    lucky New Member

    I have been on Ritalin for 1 1/2 yrs. now and it has helped me a lot with the fatigue and cognitive problems.
    My doctor would not prescribe it to me if he would in any event think that it will do me harm.
    Sincerely, Lucky
  5. reva727

    reva727 New Member

    I've been taking Ritalin for a couple of months. It only works for a shor time though, usually wears off in four or five hours. I haven't noticed any bad side affects. The doctor first prescribed Provigil but my insurance wouldn't cover it. I went ahead a bought a few to try and it gave me a headache. That's when the doctor gave me the prescription for Ritilin. I don't see any problems as long as you don't overdo it but if some one does know of problems, I wish they would let me know.
  6. Justa

    Justa New Member

    you to burn yourself out. Then You will really miss the old YOU. Stil recovering from 9 months use, Ride the hobby horse . you will get sick of the ride.
  7. Antenbunny

    Antenbunny New Member

    I started it a couple weeks ago. I use it when I need it, not every day. I guess I feel like my brain is so impaired at this point and I have no energy, I'll try anything to get a lillte bit of a life.
  8. nacl4y

    nacl4y New Member

    I used ritalin with some success :p for almost 4 years. It allowed me to go back to university and complete my degree, and continue on with my career in engineering. It gave me back the life I so desparately wanted - at least for 4 years.

    I know all the studies show, and I guess logic dictates, that what it basically allows you to do is push your body past its natural limits. That in all likelihood does damage to it. Perhaps irreparable, perhaps not. After 4 years on it, the effects were minute and negligible, so I discontinued it. And eventually went on modafinil (alertec, provigil I believe) - which is a relative of ritalin and thus has the same effects I'd imagine. The effects of modafinil have dwindled to very little.

    For me, quality of life was important. I just wanted a chance to be "normal" or as close to it as I could get. Ritalin gave me that chance. In the long run it may have been an unwise decision, and I may have done myself alot of harm. For that reason I cant' recommend that someone else does it.

    But I also can't recommend against it. It's a choice you have to make for yourself. For me, even if the harm is repairable, it was worth it and I'd do it again. But I would never advise someone I love to do it. If that makes any sense at all.
  9. Mikie

    Mikie Moderator

    Many docs aren't even aware that Ritalin can cause brain damage in the long run.

    I do believe that Provigil is probably a safer alternative because it works in the area of the brain responsible for dopamine a much small area than that for Ritalin. It may turn out to be harmful in the long run too; we just don't know yet. In fact, the people who study Provigil and who produce it don't know exactly how it works.

    Drinking a little caffeine is just as effective in terms of energy and alertness as Provigil and a lot less expensive. Some people can't tolerate caffeine and one does build a tolerance to it.

    There are no easy answers. I do know that taking Klonopin in small doses during the day actually helps with alertness. It stops the madness of the neurons misfiring.

    If you have a car which is running rough, you can advance the idle speed and cover up the problem which is like what taking a stimulant does in the body. In the long run, though, it will burn up the engine and the transmission as well. It's an individual choice, but one which is serious with potential long-term consequences.

    Love, Mikie
  10. lucky

    lucky New Member

    and thanks for your reply and concern. However, I value my doctor's judgement who seems to be much more knowledgeable about CFS and concerned about any future effects of the meds I am taking than what I mostly read on this board. He would never give me anything which would be of harm and is trained enough to know the effects of Ritalin. He would not prescribe Provigil because it would not be a good choice of a drug for me. And I see him at least once a month, so he monitors my meds carefully.
    And I do not believe in suffering either. If I can have a little quality of life and can do some things I would normally not be able to do, this is a question of priorities. Also, over the many years that many of us are ill, one learns to monitor the body and not to take meds unnecessarily.
    In the end, the choices we make are our responsibility and as long as we can live with them, that's what counts. But what is more of a concern is what I read people are being prescribed and what they are taking in supplements which can be as harmful.
    Klonopin was out of the question to be prescribed for me because it can be addictive, and it was also refused. Two different standards but no matter what, meds are powerful and should be prescribed with caution.
    Take care, and kind regards, Lucky
  11. idiotsinc

    idiotsinc New Member

    I've been taking ritalin and buspar since March. It's not a cure but helped to get me back on track so I can function and work at getting back into shape. It's part of a slow process. I usually only take 10mg in the morning now since the buspar has gotten my anxiety levels down where I'm starting to get a good night's sleep (or at least better). As I said it's part of a long process. My shrink said it can take a year to get the brain chemicals to balance. I asked him about the "frying" and he said he's read it and that it's not true. He also said the chemical composition or "blend" is different in everyone, no two alike so it takes awhile to find the right meds. IMPORTANT: IT TAKES TIME. You also have to do some experimenting to find which meds don't work together. I had to stop taking decongestants and pepcid-ac because when combined with ritalin they disturbed my sleep and made me real nervous.

  12. lucky

    lucky New Member

    I have read about all the scary things about Ritalin many times over, however, there are many other meds which are much more dangerous and which people are taking to get a little quality of life. And I have a doctor who is NOT sharing Dr. Cheeney's opinion.
    I am one of the people who knows what she is doing and believe in life now and not worry what happens to me in the future, but look back and will have a few memories of the nicer things in life which I probably would have missed. This is a matter of priorities, and we are the ones who are responsible for our decisions.
    Sincerely, Lucky
  13. Mikie

    Mikie Moderator

    I am glad you have a doc in whom you have so much confidence. As you know, a good doc is a rarity for many of us. Well, it appears as though there are two schools of thought on this and as with many things, it is an individual choice. We all must make these choices ourselves with our own docs. As long as people are making informed choices, they can be comfortable.

    BTW, Klonopin is not addictive. One can build a tolerance to it and become physically dependent on it, but it is not in and of itself addictive. That is a myth. There are still many docs who confuse tolerance and dependence with addiction, unfortunately.

    I wish you well with your treatment and that it continues to allow you to live life as fully as possible.

    Love, Mikie
  14. lucky

    lucky New Member

    I agree with you that it is of the utmost importance that we trust our doctors. But at the same time, it is equally important to understand and have knowledge of the meds we are treated with.
    My doctor knows me for almost 20 yrs. which has been the biggest help with this illness, and I was more than fortunate to escape the many horror stories I have read on this board where people have had so many bad experiences. On the other hand, I run into the same problems that there is just not enough time for CFS patients, and I have to do my homework before I have an appointment to get as many questions in as possible.
    Also my symptoms are slightly different, I believe, and I am sure this was taken into consideration as well when the Klonopin was rejected.
    Thanks for your reply and kind regards, Lucky

    [This Message was Edited on 07/05/2003]