Last reply 1 week ago
Medication for Fatigue

Hi Everyone

I have really been suffering from fatigue over the last few months. This has probably been heavily influenced by the summer heat wave and my recovery from my second round of Lemtrada treatment.

Initially I was prescribed Amantadine Hydrochoride and although I felt this did help a little I was still suffering.

My specialist has now put me on Modafinil which I have been on for 2 weeks now. in the first week I did suffer from a number of gastro issues such as stomach bloating/churning etc but these seem to have settled down in week 2.

I do feel that this is helping. I am taking one pill (100mg) in the morning and one at lunch. I have however started to take these a bit earlier as I am finding that I can still be awake in the early hours of the morning. which is then a vicious circle as I am tired the following day due to lack of sleep!

I am interested to hear if anyone else has been on either of these medication and their thoughts.

Also is there anything else out there worth investigating further?

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stumbler
1 week ago

@adamframpton , I did try Amantadine, with no noticeable improvements. I did want to try Modafinil (known as Provigil in America), but the conversation with my Doctor never happened.

You are wise to bring the Modafinil earlier, if it’s interrupting your sleep. Quality sleep is the foundation for most things.

There is Fampridine (https://www.mstrust.org.uk/a-z/fampridine-fampyra). Whether you can persuade anyone to prescribe this is very doubtful……..


adamframpton
1 week ago

@stumbler thank you very much. I will persevere with the Modafinil as only been taking it for two weeks now. thank you for the link concerning Frampridine, I will have a read.


cameron
1 week ago

I can’t speak from experience but a very dear (MS) friend has had extreme fatigue in spades for years. Eight months ago she started on a juicing regime, based on a book from someone called the Medical Medium. It involves two juices a day based on celery and maybe some other ingredients but nothing extraordinary. Apart from that, she is not on any particular diet. She can’t quite believe it herself but the fatigue has totally gone. She is better than she has been for six years.


twinpenny
1 week ago

Hi, my wife suffers immensely with fatigue, she can be bed bound for days at a time.
The root cause of her fatigue, in part, is the nystagmus she has, which in turn has a massive effect on the coordination and excessive strain that is placed on her brain in general. The specialists tell her that there is nothing they can do, drugs or physiotherapy. She is slowly getting worse and her quality of life is zero.
I bought her a mobility scooter to help her get out and about and to try to give her some sort of social life back, she went out once, the ten minute journey totally exhausted her and she needed a week to recover.
Has anyone had any such experiences and how did you overcome them?


stumbler
1 week ago

@twinpenny , your wife is lucky to have you. You have an understanding of the amount of work our brains have to do to try and process over our damaged Central Nervous Systems (CNSs).

As for fatigue, Amantadine or Modafinil are the only medications available to us. These are worth a try.

Otherwise, our fatigue has to be managed. We know that our energy reserves are limited, so we have to work within our limits. I’m not sure whether the following booklet will help at all :-

https://support.mstrust.org.uk/file/Living-with-fatigue-2018.pdf


mhworden
1 week ago

@adamframpton. I was on modafinal for years and found it helped get me through the work day. But like you wide awake in the wee hours. Changed to just taking both doses first thing in the morning and that seemed to resolve the issue.

I did try fampyra for foot drop while on modafinal … Seemed to improve that a bit BUT landed up having a seizure and going into respiratory and cardiac arrest … So, am not a proponent for fampyra. Subsequently they took me off modafinal too.

Tried amantadine but didn’t really find an improvement. Since I’ve quit working, afternoon naps are now an option 😉

Have you been tested for sleep apnea? Getting a cpap machine has improved the quality of my sleep too.


grandma
1 week ago

I was prescribed Amantine years ago by the ms nurse but only for special days out, I had used the analogy of wanting to go to Cornwall and see the Earth project,but it isn’t cheap and I didn’t want to go in at 10.00 and be knackered by 2.00 and she suggested it, only to be taken when I wanted to go somewhere for a full day, and not to be taken after 11.00 am because you will still be awake late into the night. I don’t work anymore and now take afternoon naps.😍

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