Pro's and Cons of Provigil/Modafinil

[Lillybelle]

I know this has been discussed before, however, I have some different questions.

First, a quick snapshot of me(y)/ME
18 Months of fatigue, sleepiness, leg pain,weakness, diagnosed Hypothyroid Oct 12 plus Hashimotos antibodies. Thyroxine fixed thyroid blood levels but not fatigue. Had months of gut problems and headaches have been helped by diet change.

Diagnosis 1 GP
This GP has known me for 15 years and knows the "whole" body/mind story. And is a fantastic caring GP. She referred me to the two specialists (CFS Physician and Endocrinologist) because I was sick for so long and we had tried every other test, gastroscopy, scans, all bloods, stool, urine tests and brain scans.

Her recommendation, -Dont buy into the CFS, she has had other patients who have had viruses for 2 years or more that have gradually gotten better. (?) She is also concerned re: the use of stimulants.

Diagnosis 2 CFS Specialist
Melbourne (Aus) CFS specialist has given me a diagnosis of CFS in June 13 and has recommended PACE and GET. Has also said that he believes CFS comes from suppressed unresolved anger, grief and fear. And that psycotherapy/counselling can help. Well have had loads of that all my life. Ive had more psychologists/counsellors/psycotherapists than I've had boyfriends.

Also to try Modafinil, recommended dose 100mg for wakefulness and B12 injections. But basically said very few adults with this disease ever get back to full time work functioning. That really depressed me because work was very if not "the" most important purpose in my life before getting ill.

Diagnosis 3 Endocrinologist
. None yet. However had Cortisol tested and its in the low range. So am going for a Syncathen test this week. Potential for Addisons disease or other Pituatary problems eg: tumour.

Modafinil Questions
(NB: I've had 2 days of 50mg - as recommended by specialist progressing to 100 mg. I did have 1 day off in between to ensure I wasnt going downhill.)

1. Besides fatigue and sleepiness (usually sleep between 2-3 hours from 11am-2 pm plus 9-10 hours per night) I have an overwhelming feeling of "I have to put my feet up".
Can Modafinil help with this? If not, is it harmful to my health/the illness to be awake when my body/mind wants to rest/sleep?

2. From your experience with Modafinil can pushing through a previous rest/sleep cycle help you?

3. For people with depression or whom are taking anti-depressants can Modafinil affect your mood?

4. Has anyone with CFS used this long-term successfully? Has your work capacity improved and your health?

5. I found an author who had MS, said it gave her her life back (her mind, concentration and ability to write) and she noted that it had no physically ill effects on her. Has anyone had this experience?

6. Whilst this drug affects people differently, has this significantly affected your health negatively in the medium term?

My Experience
Inconclusive as yet. The first day, after 50mg I stayed awake the whole day and did yoga and rode to the market (30 mins there and back). I usually ride there once per week but not with the yoga.
Found It hard to wind down, felt a bit hyper.

Day 2 nothing as I wanted to be sure I didnt go into a crash. I slept as usual for 2 hours and felt more tired than normal.
Day 3- 50 mg 8 am. Still felt like lying down at 11, needed legs up. And have been on the couch most of the day. Still not sure if not letting myself sleep and lie down 2 days ago has caused more fatigue than normal.

Your thoughts?

 

[Valentijn]

Lillybelle
1) Your "CFS specialist" is actually a "chronic fatigue idiot". GET is usually harmful to ME/CFS patients, and has nothing to do with bottled up emotions, and is not cured by psychotherapy.

2) Your GP sounds like a good one. Her conclusion about it not being CFS might be wishful thinking on her part. In either case, I would avoid a "wait and see" approach and try to get testing to confirm a virus or other infections, as well as going after the adrenal and OI stuff.

3) A drug forcing wakefulness via releasing histamine in the brain sounds like it could be bad idea if you do have ME/CFS. If your body is forcing you to sleep a lot, there's usually a good reason.

4) The having to put your feet up feeling comes from orthostatic intolerance (OI). Some people get a jump in heart rate immediately when standing (POTS), but most ME patients have a slower onset of Neurally Mediated Hypotension, where blood pressure and/or pulse pressure drop when upright (even sitting up) too long.

Your afternoon nap and OI may very well be related. OI can result in the brain being mildly deprived of oxygen for a while, which creates a very strong urge to lie down. Do you sleep during these naps, or just feel better after laying down? If you lay down earlier in the day for a bit do you still need the afternoon nap?

 

[heapsreal]

if a doctor calls themselves a cfs specialist and recommends cbt/get, turn around and run as fast as u can as it shows they dont understand the illness. When u said a melbourne cfs specialist i thought u were going to say Dr Lewis as he is the man to see down there.

Modafinil like any stimulant is really just a symptomatic treatment that when used occassionally can help one get things done but one has to be careful pushing themselves on energy type drugs as there can be a pay back. its wise to rest before and a day or 2 after needing these meds to get things done.

Thats good getting adrenal hormones tested as these are generally dysfunctional in many cfs/me but generally only obvious adrenal issues are treated, if one is in that grey area then generally its hard to get any treatment other then an antidepressant unless u see an intergrative doctor who has a better understanding of these test results??

Heres a link u might find helpful https://sites.google.com/site/cfstestingandtreatmentroadmap/
keeping researching and dont take every doctors word as gospel especially if u dont agree or it doesnt make sense.

good luck,
cheers!!!

 

[Lillybelle]

Valentijn
Thanks for your response. I actually suspected I may get this response from this forum and I am thankful for it.

1) How can someone treat 7,000 cfs patients, be the head of a CFS specialist wing and be giving advice that is not efficacious?

2) I originally had a bad fluey virus Jan 2012, developed into vertigo, nausea, gut problems and then the ongoing fatigue, PEM and body pain. I will have EBV, as I have had glandular fever in the past. I have had every blood, urine,fecal test available, plus specific ones for diabetes insipidus. Nothing shows in any of the blood tests.

3) Thanks, this is my concern too. If the body is trying to heal why force it awake? Specialists answer is... the sleep is non restorative and non refreshing so there seems to be no purpose. His answer, "Your brain has gone to sleep and we have to wake it up.".

4) I dont feel like my heart rate drops when I stand and I dont think my blood pressure drops on standing. What is very clear is that my legs are very tired after my morning walk. (I have done this all my life- walk every morning 20mins after waking). Walk for 1 hr, make breakfast and legs are very weak. Need to eat almost lying down. Then go to sleep for between 1-3 hours, depends how tired I am. On a good day I can get away with lying down, resting, meditating- but legs must be up.

Are the weak legs OI?

5) Nap usually starts at between 10.30-11 and goes till between 1-2. After that I can sit and do some reading from about 2-5 on a good day or cook. On a bad day I lie on the couch until 5.

I have read that Low cortisol can make you feel weak and tired and that this is a symptom of ME. Do you think this is the case or is it more likely to be the OI?

 

[Valentijn]

1) How can someone treat 7,000 cfs patients, be the head of a CFS specialist wing and be giving advice that is not efficacious?

By being extra stupid and putting a lot of effort into ignoring reality (and mountains of research). The psych groups do the same thing in Oxford and Nijmegen.

2) I originally had a bad fluey virus Jan 2012, developed into vertigo, nausea, gut problems and then the ongoing fatigue, PEM and body pain. I will have EBV, as I have had glandular fever in the past. I have had every blood, urine,fecal test available, plus specific ones for diabetes insipidus. Nothing shows in any of the blood tests.

Sounds like ME/CFS. Welcome to the "resistant to treatment" club

4) I dont feel like my heart rate drops when I stand and I dont think my blood pressure drops on standing. What is very clear is that my legs are very tired after my morning walk. (I have done this all my life- walk every morning 20mins after waking). Walk for 1 hr, make breakfast and legs are very weak. Need to eat almost lying down. Then go to sleep for between 1-3 hours, depends how tired I am. On a good day I can get away with lying down, resting, meditating- but legs must be up.

It really can't be tested without a blood pressure and/or heart rate monitor. I can't tell the difference between a heart rate of 110 and a heart rate of 80, except that I don't feel good when it's at 110. Blood pressure changes are even harder to get a feel for.

Are the weak legs OI?

Quite possibly. They tend to get a bit shaky when upright too long with OI problems.

5) Nap usually starts at between 10.30-11 and goes till between 1-2. After that I can sit and do some reading from about 2-5 on a good day or cook. On a bad day I lie on the couch until 5.

I have read that Low cortisol can make you feel weak and tired and that this is a symptom of ME. Do you think this is the case or is it more likely to be the OI?

Your symptoms really fit with OI. But adrenal, neurotransmitter, and/or hormonal problems might be capable of causing both OI and low cortisol.

 

[heapsreal]

Lillybelle, yes sounds pots/oi type symptoms. These can improve with fixing hormone issues. Go after all your hormones and get them to an optimal level and not be happy if the doc says its ok when its low and only just in normal range but this isnt optimal.

Also need to go after all the infections, many of the herpes viruses reactivate in us mostly because we have poor low nk function so antiviral treatment is worth looking into, With exercise its just a no no until one is functioning at a 7 or 8 out of 10. If one can handle a short walk without getting post exertional malaise then thats ok but i wouldnt make it a regular exercise routine.

Everything in us is individualised that one has to work out themselves with the help of a good doc and personal research.

 

[Lillybelle]

heapsreal thks for your advice, I found the link really interesting and resources helpful. I'm afraid if I took that list to my GP or specialist they wouldn't be able to justify such tests without the supporting research/clinicals trials etc.
Do you know specialists GP who would conduct these tests in Australia?
And I'm afraid I can't afford integrative specialists @ $200 plus per session without paying for the tests.

But I do appreciate your knowledge sharing.
Re Modafinil: I think you are right. Use cautiously, review and only use when necessary! As a friend of mine says, about doctors, medicine:
"Open your ears and your mind but dont let your brains fallout".
This friend was diagnosed with ME/CFS after several years of debilitating fatigue. It was not until she was admitted to hospital and close to death that the appropriate MRI was done identifying the brain tumour that was about to kill her.

Re: Exercise: I'm an ex athlete and trainer. If I couldnt walk my dog in the morning (as selfish as it sounds) I dont want to be around. I have walked every morning of this illness even with nausea vomiting and vertigo.
Im nowhere near that bad now but it still is tiring but worth every step and breath of fresh air.
P.S. I live close to the beach so makes it more bearable

 

[peggy-sue]

Having your legs up when you are sitting down helps your heart not to have to work so hard to get the blood up from your feet.
When your legs are stationary, you are not getting the benefit of the muscular pump in your legs helping it.

My BIL (who has ME) was given Modafinil to get him through coping with work - crashed eventually, big payback.

 

[heapsreal]

heapsreal thks for your advice, I found the link really interesting and resources helpful. I'm afraid if I took that list to my GP or specialist they wouldn't be able to justify such tests without the supporting research/clinicals trials etc.
Do you know specialists GP who would conduct these tests in Australia?
And I'm afraid I can't afford integrative specialists @ $200 plus per session without paying for the tests.

But I do appreciate your knowledge sharing.
Re Modafinil: I think you are right. Use cautiously, review and only use when necessary! As a friend of mine says, about doctors, medicine:
"Open your ears and your mind but dont let your brains fallout".
This friend was diagnosed with ME/CFS after several years of debilitating fatigue. It was not until she was admitted to hospital and close to death that the appropriate MRI was done identifying the brain tumour that was about to kill her.

Re: Exercise: I'm an ex athlete and trainer. If I couldnt walk my dog in the morning (as selfish as it sounds) I dont want to be around. I have walked every morning of this illness even with nausea vomiting and vertigo.
Im nowhere near that bad now but it still is tiring but worth every step and breath of fresh air.
P.S. I live close to the beach so makes it more bearable

heapsreal thks for your advice, I found the link really interesting and resources helpful. I'm afraid if I took that list to my GP or specialist they wouldn't be able to justify such tests without the supporting research/clinicals trials etc.
Do you know specialists GP who would conduct these tests in Australia?
And I'm afraid I can't afford integrative specialists @ $200 plus per session without paying for the tests.

But I do appreciate your knowledge sharing.
Re Modafinil: I think you are right. Use cautiously, review and only use when necessary! As a friend of mine says, about doctors, medicine:
"Open your ears and your mind but dont let your brains fallout".
This friend was diagnosed with ME/CFS after several years of debilitating fatigue. It was not until she was admitted to hospital and close to death that the appropriate MRI was done identifying the brain tumour that was about to kill her.

Re: Exercise: I'm an ex athlete and trainer. If I couldnt walk my dog in the morning (as selfish as it sounds) I dont want to be around. I have walked every morning of this illness even with nausea vomiting and vertigo.
Im nowhere near that bad now but it still is tiring but worth every step and breath of fresh air.
P.S. I live close to the beach so makes it more bearable

You dont have to get all the tests done at once and your gp should be able to bulk bill many of them. Just get all the herpes viruses tested for , full blood count and a lymphocyte subset test. that can help see if your in the herpes/antiviral subset group and a possible treatment exists. U will probably be positive for some of them igG which they say is a past infection but they cant tell if its still active though but they will try and convince u its not an issue when it is. the lymphocyte subset test can help tell u if their active, especially high cd8 t cells are a strong indicator that herpes viruses are active and then its worth having a crack at trying to treat it. while doing this its worth slowly looking into other tests on the cfs road map as its not uncommon to have a few things going on at once. we really are Fd up.

cheers!!

 

[heapsreal]

love the avatar peggy-sue

 

[peggy-sue]

Thanks, heaps! I had a bit of trouble loading it - it does have a title - "Curiosity".

 

[Lillybelle]

Having your legs up when you are sitting down helps your heart not to have to work so hard to get the blood up from your feet.
When your legs are stationary, you are not getting the benefit of the muscular pump in your legs helping it.

My BIL (who has ME) was given Modafinil to get him through coping with work - crashed eventually, big payback.

Hi PeggySue thx for yr reply. How long was yr BIL on modafinil? Can you describe what happened? Thanks LB

 

[peggy-sue]

Not for very long - a few weeks at most. He just went downhill until he decided it was not doing any good whatsoever, but rather, that it was harming him. He did rather push it before coming to that conclusion, hence the big time payback.