Happy New Year,
My husband has been taking modafinil for years now and they are working less and less.
Does anyone else take medication for fatigue and if so which ones and are you getting on with them.
Thanks
Caz
Hi Caz
Sadly there are only really two drugs for MS fatigue at the present (as far as I know), Modafinil and Amantadine. Modafinil is the best one. He could try Amantadine if heās not tried it before.
Iāve had both, first Amantadine but that stopped working after a couple of years (and having to have a sleep in a motorway service station just to be able to stay awake isnāt ideal). Then Modafinil for another few years, but that stopped working for me too.
Although Iām now trying to get Modafinil re prescribed as apparently it can help with cognitive problems.
Maybe someone else has tried a different drug??
Hopefully heāll find something.
Sue
Dr Chataway prescribed Modafinil to me. About three years ago, he would prescribe it for excessive sleepiness, but not for anything else. I donāt know if he still does this.
I found it made me hyper - full of ideas, even more talkative than usual. After a few days on it, I bored myself by being so āupā all the time. I stopped taking the Modafinil and moved my daily dose of Clonazepam to the evening and Iāve never had problems with excessive sleepiness since. My husband still takes my Modafinil sometimes if heās slept badly and has a lot of things on at work. He finds it makes him happy as well as productive. Not everyone has such a good experience with Modafinil and you ought to read the other thread about it, here:
I should have said, my GP was prepared to prescribe Modafinil on Dr Chatawayās recommendation but not without it.
Thanks all I will have a word with the MS nurse tomorrow.
Hi
I also have vit B12 every 3 weeks which do help.
Unfortunatly as the disease progresses it seems to have less effect
Ronin.
I think with modafinil you need to have flushing out periods were you spend a month off of it. Then when you go back on it seems to restore its effectiveness. Also for the months you are taking modafinil, grapefruit juice has an enzymatic inhibitor which is supposed to slow down the bodyās ability to break it down and so increasing its half life.
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Hi
I have used it for a few years and yes it does seem less effective with time.
I also have vit b12 jabs every 3 weeks which help.
Ronin.
my neuro forwarded instruction to my GP to script me some Modafinil and i was so amazed i took an appointment with a junior gp at the practice to get the script, i didnt want my own gp to see it as i think he may have blocked it as its not used for ms it seems nowā¦
3 days later and oh myā¦ within my first 24 hours i was almost in tears at the amazing way i felt - just as i felt before this dreadful disease started to modify my life, modafinil took my concentration back to the heights i was always used to and i have just done the best 2 days work in the last 5 years.
i now realise how far this disease has pushed me and i am no longer performing mentaly as i should and its going to take my job nextā¦
Unless i can keep the prescription, i now have an appointment with my own gp next week and the junior doc only gave my 5 days worth so if my own gp says my Neiro made an error what can i do then?
I may be wrong but it seems its only licenced to prescribe for narcolepsy nowerdays.
T7-Peace.
I thought it was still licenced for people with MS and excessive sleepiness. I think your GP would have a lot of trouble taking you off a drug that you feel is helping you and that another member of the practise was happy to prescribe. What would that say about the other doctor?
If I were you, Iād go in quite calmly and say something like āyour colleague was happy to give me a prescription for five days of Modafinil so I could see how I did on it. It seems to be helping me a lot, so can we set up a regular prescription, please?ā. That seems to me to make it difficult for him/her to say no.
Hi T7
I wonder if part of the reason you only got 5 days worth is that it needs to be closely monitored at first. When I started, I had to get my scripts through the neurologist & hospital for a while before I was able to get it through my GP, as it can affect our hearts & blood pressure.
Assuming you get longer scripts for it, Iād caution against going wild with it. It can be great, but itās effectiveness can lessen over time, so if you can get away without increasing the dose, I reckon stay at a lower dose (mind you though, Iām not a medical expert at all so my logic maybe totally unfounded!)
Dan
It was never formally licensed for MS, just for narcolepsy.
I took it for several years and unfortunately the effect does wear off over time. I stopped taking it because once, about 6 years ago, I went on holiday with all my meds bar the Modafinil. So I just had a few tablets that were in my bag, I eked them out over a few days so as to not stop suddenly and was surprised to find that I felt no different.
I tried to get a new script last year and was refused (Iād thought maybe a few years off the drug would be sufficient to give me back the alertness you feel when you first start).
Ultimately I think itās a great drug for a few years if you can manage to get it. It helps massively if you are working, but just be aware that the effect doesnāt go on for ever. For that reason, start with as low a dose as you can, and only up it very gradually. That way you can get the effect to last for longer.
Sue
its now late JULY 2016
I have a full script for Modafinil now and my doc is happy to prescribe given my situation, its working well and im now on a stable dose of 200mg daily, its enough to make a difference without going over the top.
Im already aware its not going to be a lifelong fix as i can tell my body has adjusted and begun to be tollerant, i expect i have a few years of usability though,
One somewhat bad point is that because the cognitive results are so striking i have become aware of how bad i have been in particular for the last 6 to 9 months and the effect on my job has been massivve, im not sure if its just in time or may be ill soon be out of a jobā¦
My workplace pretends to be all sympathetic but i dont need sympathy, i need them to help! They see any fluctuation as someone going downhill and therefore less useful, i have seen people ejected there already and i do worry, may be though im over anxious and out of focus due to the 3 years of pregabalin?
Pregabalin was awful to come off - the 2 months after were hard with diazepam style withdrawl, mental confusion paranoia flu symptoms and generaly i felt like i was sliding down a never ending slide, but after the two months my head is back to being mine again and i donr feel depersonalised now ( thankfully )
T7
I am glad that you have got your mental focus back and had no idea that Pregabalin was such a swine to come off. I agree that modafinil isnāt going to win the war for you, but anything that helps you to stand your ground at work for as long as possible is good. I have been on it for years and it is still doing a good job for me (in comparison to what Iām like off it, anyway.)
Alison
Iām just glad that some people are still managing to get prescriptions for Modafinil. It is so much more effective than Amantadine for fatigue. And they are the only two drugs that are available for MS fatigue.
I suggested to my neurologist that maybe it would help with my cog fog but he didnāt think so, so I didnāt get to go back on it.
But for those people who can get it, I suggest you start on as low a dose as you can, that way youāll continue to get the benefits for as long as possible.
Sue
Have you considered approaching your local neurological team to speak to the OT concerning fatigue management? I only ask as a friend of mine with MS did this and it has totally transformed her life. You have to keep a very accurate diary of what you do on a day to day basis and have to be very honest, she said that this is what she found the hardest. It combines rest, relaxation and activity although you do have to plan in advance what you want or have to do. I did an Access to Health Studies course a few years and did a 3,000 word independent study on MS fatigue. One of the things with fatigue is that IF you can get yourself physically fit it can greatly lessen the fatigue. My friend tried modafinil but it didnāt work for her so these maybe options for you.
Andy
ive had probz with fatigue, iritability, sleepynes for many yrs, My nuero, put me on amantadine this made me argue , paranoid, & generally Mr somebody yu donāt want to know!! 2wks ltr, i ditched them, did i give them long enough? the present Mrs C thought too long my thoughts!! what about modifinil??, juju x,
ive had probz with fatigue, iritability, sleepynes for many yrs, My nuero, put me on amantadine this made me argue , paranoid, & generally Mr somebody yu donāt want to know!! 2wks ltr, i ditched them, did i give them long enough? the present Mrs C thought too long my thoughts!! what about modifinil??, juju x,
I use Modafinil. 200MG daily. I think (hope) the cognitive benefits allow me to manage my āspoonsā more efficiently. I find the improvements can be sporadic. Some days it works well other days less so (How very MS!). I was on Amantadine for quite a while until it stopped working for me. Before trying Madafinil I discussed it with my GP, Consultant and MS Nurse. I had an ECG and a bit of an MOT. then started to use Modafinil while being quite closely monitored. On the whole I would recommend checking it out to those who think it may help them. With one caveat. Make sure you get as much professional advice as you can before giving it a go and remember it is a powerful drug. I appreciate that I have very good access to medical advice and that many do not have that benefit. Please folks get the best professional advice you can and bear in mind that many Doctors will be wary of prescribing drugs like Modafinil.
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hello again,
its October now and im still taking Modafinil as prescribed, i notice taking a day off every ten days is a great benefit, im so glad my medical professional team offered me this as its proving to be the single most beneficial thing i have been given
( except copaxone but you cant meaurse its benefit as a prevension med )
I find my mind is more fluid and my attention is so much better, im also feeling better about my condition, yes i have some tough times but im functioning and still working.
i do find my diet is key to feeling well and moderate excercise is a big help too, i know thats pretty much what docs say but its true honestly.
anyway - all in all * things are okay *
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