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@TrixieStix What is DSPD ? I am sorry about your loved ones, N24 sounds awful... :-(

Thanks a lot ! I have been reading about that a little bit lately but didn’t realize it was actually a sleep disorder. I will definitely read about it !

Yes, I am still using Nimotop. I am unfortunately on a downward slope but Nimotop is helping me not go down as fast. I have been taking it for 18 months now. If anyone is interested in knowing more, just ask !

That made me cry. I am so depressed from this terrible outcome.

I started Abilify a few weeks ago and it seems to be helping with depression/anxiety, which it was prescribed for, but I think it might be helping with that as well. Or maybe just because I increased my Nimotop. Too early to know if it’s just another phase, though.

Make a journal of your migraines : date, time, duration and severity. Give him the paper without saying anything besides : here is a journal of my migraines, I thought you should see it. He should respond well to facts, and they will speak for themselves.

@JaimeS I started feeling mild symptoms in 2013, but really got ill in 2015, so about 3 years ago now.

And then it got better ? Same but different ? Worse ?

I’m at my worse every morning. Up to about 12 o’clock or so. Then I have a little more energy until the end of the afternoon, unless I have to nap. This happens on the days my brain lets me sleep somewhat adequately during the night. When I sleep little at night and have insomnia, I usually...

It is appaling and revolting that we have to resort to such treatment to prove disability. The risk of making us more ill is real, and this testing is not realistically available to bedbound patients, who are just as much in need of recognition of their disability, if not more, due to the...

Yes, I am part of this study. This machine is like a BP cuff. For about an hour or so, maybe 2, I can’t remember, it inflates and squeezes your arm at different intervals, most likely disrupting blood circulation and causing muscle fatigue. Meanwhile, blood is regularly drawn. I did...

I am part of Dr Moreau’s clinical study. I’ve had this done. I seriously doubt that it gave me anything vaguely resembling PEM. Or if it did, it was very light PEM.

@Wonko why blue cardigans ? Inside joke ?

The 2 day CPET test is the most risky test anyone with ME could ever do. As I’ve said in another thread, it took me 6 weeks to go back to baseline, or so I thought, and then I started going downhill and I have not gotten better. I did it about 4 months ago and this is definitely the worse I...

Illness is “maladie”, and when you’re ill you’re “malade”. Malaise is pretty much as you describe it. A general, unspecified unwell feeling, most probably having to do with your heart. “J’ai eu un malaise “ could be I almost fainted, or my heart was hurting or something like that. It’s...

I am impaired in all 3 categories. My VO2 max is between 60%-75% of normal values. There were 8 different anomalies found, some of which were severe. For disability purposes, this is gold. I recommend it if you need to prove you’re disabled, if you think you can manage it. it took me six...

@Wonko thank you for contributing to this thread. It is very informative and since this is rarely discussed, I am sure it will help others. I do find it frigtening because up until now, I could still drive. My surroundings are not well adapted to life without driving. This is too big of a...

@Wonko maybe the anti-convulsion medication would help you if this is disrupting your life too much. Have you seen a specialist ?

Well, I am glad you posted this because I think it happened to me as I was leaving to go back home. Dr Hyde was in my car, and told me to go to the next stop because he wanted to explain to me how to find my way to the highway (I am in a city that I don’t know well). So he explained and got...

While going to Dr Hyde’s office today, I had a visual hallucination. I was going 120km/h on the highway and saw a female deer running towards me, on the left hand side. I was startled, but no other car driver seemed to notice it. Then I looked in my rear view mirror, expecting the see the...