Not really sure what to do

[scopey]

Hi,

I'll try and explain my situation in a concise way!
I've got a disability called spinal muscular atrophy, so all my muscles are extremely weak, and I use an electric wheelchair full time. I live in england and i'm 24

I've had fatigue issues as long as i can remember. I went to my neurologist a little over a year ago regarding it, because it is really getting in the way of my life. She sent me for quite a lot of blood tests - diabetes, anameia, hormones, thyroid etc, to see if that could be the cause.
She mentioned modafinil (if there was no indications from the blood tests), as it is sometimes used to help fatigue in MS off label, and said she would investigate it for me. i hadn't heard of it at that point, so i did a fair amount of research.
The next time i saw her she said she was unable to prescribe it as the licensing laws have changed. So she then referred me to a sleep specialist.
In the consultation with him he said modafinil is too expensive for him to prescribe off label, so he said i first need tests to definitely rule out sleep apnea, and if he could rule that out, then we should look at a cheaper drug called dexamphetamine. I had the sleep study a few months ago, and then nap tests in the day. After which he said i'm probably tired because i don't sleep enough (i slept very badly at the sleep study, and was too tired to argue with him after the nap tests)
At the consultation i had yesterday (with a different dr for some reason) he said i can't be prescribed medicine because i didn't fall asleep fast enough in the nap tests, and looked at the sleep diary i had to record, and recommended i alter my sleep schedule, by going to sleep an hour earlier and waking up and hour earlier. I'm not sure how that will help, but i'm willing to try.
it all seems a bit hopeless now, i'm doing two, 3-4 hour days a week at work, and i cannot do more due to how tired and fatigued i feel. i can't concentrate on anything really, and it makes things as simple as reading a few pages of a book, impossible. it's really disheartining as i would really like to do more with my life, and work really helps me with depression, but feeling unable to do even basic cognitive things, when fatigued is extremely frustrating
I was wondering if anyone had any suggestions as to what to do next. I'm now thinking i should see a dr privately, just to make sure that i'm getting correct information from my specialist.
Is there any advice on how to combat fatigue? Even if it's not medication based, i'm really at the point where i'll try anything, different sleeping patterns, food, diets, seriously anything.

If any further details are needed, just let me know.
any advice or ideas will be massively appreciated,

thank you

 

[Someone13232]

whats with the lack of modafinil precisely? cause i reckon its much better and less buzzy than speed for just pure clearheaded awakeness and cns boost. is it the doctor who advised that it would be too expensive for you to buy off label or can you actually not afford it? if you can afford it, theres many places to buy it legally. (perhaps message me for more information about the drug)
also i take multivitamins with iron to stop me getting extremely tired from some kind of vitamin deficiency

 

[scopey]

whats with the lack of modafinil precisely? cause i reckon its much better and less buzzy than speed for just pure clearheaded awakeness and cns boost. is it the doctor who advised that it would be too expensive for you to buy off label or can you actually not afford it? if you can afford it, theres many places to buy it legally. (perhaps message me for more information about the drug)
also i take multivitamins with iron to stop me getting extremely tired from some kind of vitamin deficiency

Hi,

Well, i live in england, so at the moment i'm going through the NHS. So i think it's too expensive on the NHS, for an off label use. They'll prescribe it for it's on label use though.
I'm not sure what would happen if i went privately though.
I currently take a supplement called Filisa, which is a herby thing to help with energy etc. but i'm sure i could take multivitamins again.

thanks.

 

[Bob Loblaw]

~~~> HLo

 

[Inflorescence]

this thread may be of interest

http://www.bluelight.org/vb/threads/715575-Amantadine-has-anyone-got-experience-with-it

 

[flyhighk]

Hi scopey,
You didn't mention how many hours of sleep you get. I would try getting more sleep. More sleep = less fatigue during the day.
Seeing a doctor privately is a good idea. He'll hopefully let you try medication which should help but may cause insomnia.
It seems that these doctors aren't taking you seriously .

 

[Maya]

Hi scopey,
You didn't mention how many hours of sleep you get. I would try getting more sleep. More sleep = less fatigue during the day.
Seeing a doctor privately is a good idea. He'll hopefully let you try medication which should help but may cause insomnia.
It seems that these doctors aren't taking you seriously .

This plus exercise! - Exercise boosts energy.

 

[scopey]

Hi guys sorry about the huge delay in replying

Hi scopey,
You didn't mention how many hours of sleep you get. I would try getting more sleep. More sleep = less fatigue during the day.
Seeing a doctor privately is a good idea. He'll hopefully let you try medication which should help but may cause insomnia.
It seems that these doctors aren't taking you seriously .

When i did the sleep study, i was averaging 8.5 hours a night. (Although i have to wake up 4ish times a night to get turned/rolled over in bed by a carer as i cannot do this myself. But whenever i wake up like that, i'm only slightly awake for 2-3minutes and fall asleep almost instantly really)
I've tried different sleep patterns, for example i used to try and sleep lots to see if it would help, so i would sleep from 12/1am until 11am or noon. Then i'd often nap in the day for an hour or two, and this overall made me feel even more tired. I've tried less sleep and more sleep too, just to see if jigging it about would help. The dr wants me to start going to sleep at 11 and up at 8, rather than the usual 12/1 until 9/9;30 i'm currently doing, i'm not sure how that'll help, but i'm going to see anyway.

This plus exercise! - Exercise boosts energy.

I basically do as much exercise as i can, by living day to day life. eating, drinking and typing all move my arms. and just doing those things tires my arms out to quite an extent. I can't build muscle, so i've got to be careful not to overdo exercise too.

The main issue is i just can't focus or concentrate, reading is hard, even keeping up with a conversation if its more than 5 minutes long is hard as i zone out or miss bits.

this thread may be of interest

http://www.bluelight.org/vb/threads/...rience-with-it

thanks, i'll have a look tomorrow when i have more time and can give it proper thought.

sorry again about the delayed reply

 

[Maya]

^it's okay no worries, I have a question too OP, have you tried supplements? Maybe vitamin supplements might help you or natural herb supplements.

 

[flyhighk]

The main issue is i just can't focus or concentrate, reading is hard, even keeping up with a conversation if its more than 5 minutes long is hard as i zone out or miss bits.

Seems like you have ADD. IMO a stimulant would work best, even in the long term you should still see some benefits.
Try eating more protein, that could help with the muscle weakness.

 

[scopey]

^it's okay no worries, I have a question too OP, have you tried supplements? Maybe vitamin supplements might help you or natural herb supplements.

I take Filisa daily. I used to take zinc and a multivitamin too, which i will restart.
I drink coffee as without it, i just cant focus whatsoever, i gave up coffee for 6-12months a year or two ago, and replaced it with green tea for a period of when i stopped it to try and see if a period off of caffeine would be beneficial, but i just felt a lot less focused and more tired overall.

Seems like you have ADD. IMO a stimulant would work best, even in the long term you should still see some benefits.
Try eating more protein, that could help with the muscle weakness.

I have wondered if i have ADD in the past. But i always assumed doctors would be hesitant to diagnose it. However serendipitously at the volunteer job i do, i met some people from an ADD organisation recently as they work in the same building i do, so maybe it would be worth having a chat with them?
I've told my neurologist, Gp and sleep doctor, repeatedly, that my issue is mental fatigue, concentration, focus, etc. and no one's ever mentioned ADD, that's one of the reasons i've never pursued it.
As far as protein goes, i do eat quite a lot, as i'm conscious that that can effect muscle building and loss (One of my friends is a nutritionist and i do food diaries time to time for her, so she helps me with things like that)

I really appreciate all the advice here, and i hope im not coming across as super negative. i definitely agree i need to look more in to ADD and try and discuss that with people.
any other advice or ideas is appreciated