Re: new here---first question

[Guest guest]

Welcome to the group. We will share what we can and hope you will feel

comfortable posting.

I have not had any stimulants, but do experience the sleepiness at

times. At other times I have trouble staying asleep due to various

problems. When I can pace myself during the day (now that I am no

longer working) I don't have the sleepy feeling unless I overdo -

usually a day or two before.

laurie

> I am new here and have lots of questions but hope to answer most of

> them by reading. How glad I am to find this forum! Not much

> available online for adults with mito I am finding. I have double

> vision about half of the time so sometimes reading is tough but will

> try. I, like others as I have read so far, was diagnosed with MS

> first and now it is looking like mitochondrial disease. I haven't

> had a muscle biopsy yet but am taking the supplements and they seem

> to be helping.

>

> I am wondering if any of you are on any stimulants? Since the MS

> diagnosis I have been taking adderral and provigil, two stimulants.

> If I don't take them I will just sleep all day. When I used to read

> about MS it was very common to be on these meds, but I haven't read

> any stories of mito people on them. I also take Mestinon for

> strength and topomax for my headaches.

>

> If you have tried or or taking stimulants please tell me what and how

> they work for you? Sometimes I wonder if they cause me more problems

> then they are worth and now that I have read about heart problems

> with mito, I am concerned. However, I don't know what I would do

> without them. Like I said earlier, I would just sleep all day.

>

> Thank you in advance.

>

>

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[Guest guest]

--- semandyred semandyred@...> wrote:

> I am wondering if any of you are on any stimulants?

> Since the MS

> diagnosis I have been taking adderral and provigil,

> two stimulants.

I have a couple of sleep disorders. One is upper

airway resistance syndrome and the other is moderate

CNS hypersomnolence. I took Provigil once and felt

really good for about an hour but then had a terrible

let down. I also had difficulty sleeping that night. I

am always tired and could sleep just about any minute

of the day. It is only my very stron will that keeps

me awake.

Mom to the two best kids in the world!

http://www.caringbridge.org/visit/thomasandkatie

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