Ritalin a God Send

Discussion in 'Fibromyalgia Main Forum' started by HRgirl, Mar 26, 2007.

  1. HRgirl

    HRgirl New Member

    I have CFS and borderline Narcolepsy although I just think it is all CFS. I am on 60 mg a day of Ritalin, broken down into 6 10mg pills (the 4 hour kind). This has been the only way for me to function halfway normal. I take one when I wake up and every two hours after that. Lasts me all day at work and I avoid the crashes in between pills. I do crash at the end of the day, but better than getting the crashes throughout the day. I have ADD as well and it helps with my concentration. The only side effects I have noticed is more dry mouth, excess sweating (which I do anyway)and my pupils are huge...I don't like the Extended release tabs as they tend to keep me up at night. If I crash too much by the time I get home I may take 1/2 a tab and then my Ambien CR overrides that when I go to sleep.
  2. Slayadragon

    Slayadragon New Member

    Do you take this other than when you are at work (e.g on weekends)?

    How do you feel on a day when you don't take any?

    Do you think that since you've started the Ritalin, your overall condition has changed for the better or for the worse?

    How long have you been taking it?

    This used to be recommended very frequently in the early days of CFS, but I've not heard a lot of people talking about it recently.

    I've not tried it, but it's certainly interesting that it's helping you to keep going.

    Best, Lisa

  3. HRgirl

    HRgirl New Member

    Let's see if I can answer everything.

    I am given 186 pills a month. Doctor's do not recommend going over 100mg a day because of blood pressure or people who are overweight like me, but he gave me the flexibility to play with them to see what works best.

    At first I stuck to the 3 20mg tabs every 5-6 hours even on weekends and noticed a big crash about 4 hours into it. Then they put me on 1 20mg extended release and 4 10mg tabs. I would take the 20 mg in the morning and use the 4 10mg as needed throughout the day. I did not like the Extended release so he tried me on 6 10mg tabs which I played around with and found that if I take them every 2 hours I avoid the crashed except in the evening. Since technically I can go up to 100mg a day, I may use an extra during the day to get me through the evening. I do not use as much on the weekend. Usually to get me up and moving in the morning and if we have plans I will take them then.

    When I don't take them my fatigue is really bad so I know it helps with that and also my ADD. My other CFS symptoms are still present, but if I can eliminate the fatigue it helps a lot.

    My condition has changed for the best short term as long term use of these shows that you can become so used to them that they no longer work plus they can be hard on a sensative brain like we have.

    The best I have felt was when I was on nothing but a sleep med and excercized faithfully and was on weightwatchers. All my symptoms went down. I would have an occasional bad day but not often.

    Minus the 10 months of pregnancy and 3 of breastfeeding I have been on them off and on for 3 years. I am using them now as a boost to keep me working as I have lost 3 jobs in the last 7 months due to this illness and not being on meds. I have started my excercize routing slowly and eating better and will wean myself off the ritalin down to 10-20 mgs a day as a help for ADD.

    I do notice that the stimulants seem to aggrivate my FMS at times but I don't have FMS as bad so I can tolerate it. I cannot tolerate the Fatigue and neither can our bank account.

    I decided to go back on them about 3 weeks into this job when my boss pulled me aside and said that she has found me dead asleep at my desk a few times snoring. I like my job and will not let this DD take it away.
  4. HRgirl

    HRgirl New Member

  5. shanel06

    shanel06 New Member

    I took Ritalin for ~5 years straight - started with the 10mg pills, ended up taking both extended release and 10mg pills for a mid-day boost. Eventually their effectiveness wore off completely. That was a mighty sad day, I will admit.

    Ritalin was a God send for me. If I hadn't tried that, I'm not sure what state I would be in now. I went from being a comatose lump to having a life, being able to function almost "normally", gradutating university, and working as an engineer. I dont' regret that at all.

    When the Ritalin stopped working, my doctor and I looked for alternatives. I've been using Modafinil (Alertec) for about 5 years now. It is a "relative" of Ritalin, and is used mainly for treatment of narcolepsy. It has been almost as big a God send as the Ritalin was. It is, however, starting to decrease in effectiveness as well.

    Right now I am attempting to switch back to Ritalin. So far I'm not sure it's going to be effective enough to switch only to Ritalin, with no Alertec to "back it up". But I have hope.

    I think the only mistake I made when I was taking Ritalin is that I didn't take advantage of its effectiveness in getting my health back in other ways - dietary, supplements, active rest therapy, etc. Instead I took advantage of the effectiveness and worked myself harder than ever. A common mistake people with CFS make, I'd say. I'm not making that mistake again.

    Thanks for mentioning the 10mg every 2 hours bit. I am going to try that. I've been taking it every 4-5 hours, and that definitely isn't working. Well that and I tend to forget to take additional doses :) Time to buy a mini alarm clock !

    Shannon L.
  6. suzannekart

    suzannekart New Member

    I have been taking Ritalin for some time now. I also never liked the extended release type. I found them to be very uneven. They would kick in and then be gone then kick in again.

    I also have ADD. As you say they are a God Send.

    The question I have for you is how much of a problem do you have with dr's writing a prescription for them. It is like they just don't want to give me enough to get me through the day. My shrink has written a script for 2 10mg a day. What a laugh. What is up with that? I used to have a dr in another state that was like yours and wanted me to regulate them. He gave me enough to last the month. I never had a problem. Now it is like a fight to make them understand how much they help.

    I ran across a site that was set up with people who were having great success taking it for their energy level. They all had FM/CFS.

    It is the only thing that helps both of my problems. When I first moved here our new insurance co. told me I was too old for it and would not cover.

    Sorry this is so long but I really would like to feel I am not alone in this.

    Thank you, Suzanne
  7. evol_or_revert

    evol_or_revert New Member

    None of my doctors will give me any :( I'm intrested to see if it will help my tiredness during the day.

    I can get it though outher means but not for taking on a daily basies.
  8. shanel06

    shanel06 New Member

    Admittedly, I've never had a problem getting a prescription for Ritalin. When I was initially prescribed it, I took it without thinking of any potential side-effects - I was just too elated with feeling like a human being again. After a year or so I started to wonder, did some reading, and went to my doctor with my concerns. He was aware of potential addiction issues, and other reports. His feeling was that I needed the Ritalin, risks or not, so he continued prescribed it. I am, mind you, not someone who likes taking any medication, and he knew me very well and therefore I don't think he had any concerns that I'd "abuse" the prescription.

    My doctor retired not long after I switched from Ritalin to Alertec. I continued seeing another doctor I'd known for eons, and she now prescribes my Alertec - so far without question.

    My recent prescription of Ritalin actually came from my sleep specialist. He was happy to see me trying to switch from Alertec to Ritalin. But he will only prescribe up to 60mg per day, and we havent' discussed the extended release option yet.

    Perhaps suggesting it as a trial for your doctors ? Take in some literature on it - there are some articles on the use of Ritalin out there somewhere. Suggest giving you enough for just 1 week, or even 4 days. My reaction to Ritalin was immediate, and incredibly noticeable. If they give you the trial script - take them, but document every step of the way. How you feel before you take them, how you feel 30 minutes later, etc. - how long it lasts, anything else you notice. Then take that documentation back to your doctor as backup as to why you want to give it a longer trial.

    Of course I'm speaking as a Canadian, so I'm not sure how well that would work from another health system's point of view :)

    Shannon L.