Was started on a new drug that's been helping with mental clarity

Discussion in 'Fibromyalgia Main Forum' started by ReallyTired, Apr 22, 2003.

  1. ReallyTired

    ReallyTired New Member

    Hi folks,

    Just wanted to let all of you know that I took my copy of the Annual CFS & FM Treatment Guide to my doctor and we are both working on a treatment plan that is outlined in Dr. Charles Lapp MD article for effective treatments. This will be a slow process to see what works and what doesn't but I am encouraged at some recent results that I would like to share.

    First, I told my doctor that I wanted to work on the problems that seem to affect my life the most like my mental fog and my inability to stay focused on a single task that I may be doing during the day. So we started on Page 4 of the guide and Dr. Lapp suggestion to use low doses of CNS stimulants like methylphenidate (Ritalin), dexamphetamine (Dexedrine or Adderall), and modafinil (Provigil). He states the latter (Provigil) has an excellent safety profile, minimal effects on the cardio system, and little abuse or habituation potential.

    So I started taking Provigil (100mg in the morning, 100mg at lunch). Been on it for 4 weeks now and it is helping me enormously. My mental clarity has improved a great deal (although I am still only 15% of my normal self), I can do much more during the day which has seriously improved my outlook. One thing though, I found myself doing too much and discovering that I would suffer intense relapses of debilitating fatigue and pain, however I have since learned to manage myself and to stop and not over do it. My days have been better and it's given me the ability to cope, which I was starting to get pretty bad at.

    Warning: Provigil is a stimulant and can make the sleep problem worse. In my case, it affected my sleep for a short time and then resolved itself. I’m also taking 125mg Trazadone, 22.5mg Remeron, and 30mg Restoril at night to sleep better.

    I hope this information can help somebody. I know that all medications effects everybody differently but if you haven’t tried it yet, you might want to talk to your doctor and see if this might be something that might help you.

    I will keep you posted on any new (good or bad) findings as a result of my attempt to examine these treatment protocols with my doctor.

    Good luck to all. Till next time.


  2. Susan07

    Susan07 New Member

    Sounds like you have a great doc, congratulations!

  3. Shirl

    Shirl New Member

    Glad you are doing well, and its so great to hear someone has a doctor that will work with them.

    Thanks for letting us know how you are doing, and what is helping you too.

    Shalom, Shirl
  4. layinglow

    layinglow New Member

    Do you have CFIDS? FMS or both.

    Prior to Provigil did you have any sensory overload, myclonic jerking, restless leg syndrome, anxiety or panic attacks, neuralgias? Signs of a hyperactive Central Nervous System or over acting adrenals?

    Fatigue is a killer, I am taking B-12 Injections every other day, and have improved...but I need more improvement. A stimulant scares me off though, as I have so many of the excited neural symptoms.

    Thanks for your answers....LL
  5. ReallyTired

    ReallyTired New Member

    Hi Layinglow,

    My doctors are no experts but they have labeled me as a CFIDS and/or Seronegative Spondyloarthrophy, which is a type of autoimmune disease that causes a severe arthritis. There are no specific tests for either so I am kind of in limbo knowing exactly what’s causing my illness; however, when you do your own research on the Internet you find that there are many illnesses that fit the symptoms of CFIDS. There are even doctors that think that chronic Lyme disease maybe the cause of CFIDS, and then again others think it’s something else. VERY FRUSTRATING !!! Anyways, to answer your question, I do have restless legs, some anxiety, not sure what myclonic jerking is but I do have occasional twitching and sometime tremors in hands and arms. Provigil is not a stimulant like caffeine but rather a mind elevating mood enhancer. It has helped my thinking ability and has helped clear the fog. It’s no miracle by no means and I still suffer on a daily basis with the pain and fatigue. It just makes it more tolerable and easier to function during the day. It may have a different effect on you. Please talk to your doctor and see if he/she thinks it’s worth a try. If you took a 100mg in the morning, I don’t believe it would affect your sleep. I am up to 200mg and I’m OK.

    Good luck, Reallytired…
  6. Panamala

    Panamala New Member

    Would you be so kind as to share who your doc is? I live in North County also and have been looking at docs in other states! Also, where did you get your Annual CFS & Treatment Guide? This is my first time here....I have a feeling I should know?

    Thanks for sharing!!!!
  7. ReallyTired

    ReallyTired New Member

    Actually it's my psychiatrist who has prescribed it for me. His name is Alexander A. Shester, MD. His office is in Carlsbad. Besides from being an excellent doctor who thoroughly understands his meds, he’s willing to work with you completely to help. He’s very down to earth and not one of those stuffy clinical types! Good luck, Reallytired…

    PS - The guide is available on this site. It is mentioned as the first listing in the Message Board at the top of the screen. You will get a copy in the mail when you become a member to Immunesupport. Let me know if you can't find the Doc in the phone book and I will forward the number to you. Not sure if phone numbers are allow on this site....?
  8. Suzanne1961

    Suzanne1961 New Member

    Have you heard anything about Reminyl ? It help Alzheimers patients with their memory and it has done wonders for my mother & also my Uncle, ask your doctor if that could help. If I CAN REMEMBER when I'm at the docs I"m going to ask him, I NEVER CAN REMEMBER !!!! :(((((

  9. ReallyTired

    ReallyTired New Member

    I will ask my doc next time if I can remember, good chance I won't because it not for another month!!!! Let me know what you find if you beat me to it.

  10. pv

    pv New Member

    My Dr. put me on aricept for fog. I can now read a book and can remember so much more than I have for 6 years. I also had mini- seizures and was put on tegrital. It was a wonderful drug that took away my seizures, twitches, speech which would break up all the time. I have tried provigal and found that I can only take it for short periods of time because I can't sleep. I take an 1/8 of a dose and after it is out of my system I sleep for as many as 24 hours before I can function again. It is a great help when I need more energy.
  11. Mikie

    Mikie Moderator

    I am soooo happy that the Provigil has helped you. It had a paradoxical effect on me, fogging my brain and causing me severe fatigue.

    I am against most stimulants because of our slight seizure state, but I do think that Provigil is better because it works in a much smaller area of the brain where dopamine is produced. It is also used for people with Parkinson's Disease. How Provigil actually works in the brain is not well understood.

    I did read an article which stated that most people can get the same results by adding a little caffeine in the morning at a much smaller cost. I've been doing this off and on so as not to build a tolerance to the caffeine and it is working so far.

    Love, Mikie
  12. ReallyTired

    ReallyTired New Member

    Maybe I have Pakinsens, crap.....how do you spell it. Well I'm getting a brain MRI and a PET which will hopefully rule out any of those DD's.

    I'm Reallytired....
  13. kardog

    kardog New Member

    I have been taking 200mg Provigil every morning for about 10 days. I feel like a different person! I was sleeping my life away and couldn't snap out of a serious and long bout of depression. I actually look forward to the next day instead of dreading it. I have had to remind myself not to overexert myself and end up too exhausted and flared up with the fibro. I hope it continues to work. The only thing I have to complain about are some headaches and sometimes a wierd crash in the afternoons. Hopefully my blood levels will even out and that won't happen so much. I wondered about taking it 2x a day instead, maybe I'll try that. Glad to hear it's helping someone else. .....Karla