modafinil improves fatigue in patients with orthostatic intolerance.

[heapsreal]

Many patients who suffer from orthostatic intolerance (OI) may also have severe fatigue and extreme exercise intolerance. In some of these patients, fatigue may be so severe that they are unable to maintain employment. In some, even the activities of the daily living may be compromised. We report on the use of modafinil in a subgroup of patients who failed therapy with commonly used medication for fatigue in patients with OI. The study was approved by the institutional review board. A retrospective nonrandomized analysis was preformed on 60 patients evaluated at our autonomic center for OI from 2003 to 2010. The diagnosis of OI was based on patient history, physical examination, and reponse to head up tilt table testing. All these patients had fatigue as their predominant symptom. Multiple trials of stimulants including methylphenidate, amphetamine, or dextroamphetamine failed to provide symptomatic relief of fatigue in these patients. Each patient received modafinil (100-200 mg daily). The mean follow-up period was 9 ± 3 months. A treatment was considered successful if it provided symptomatic relief from fatigue for the patient. Sixty patients, age 29 ± 15, 52 women were included in the analysis. Migraine (57%) and joint hypermobility syndrome (33%) were common comorbidities. Out of 60 patients, 40 patients reported initial improvement with initiation of modafinil therapy. Twenty patients reported no change in their symptoms of fatigue. Of the 40 patients who showed initial improvement in their symptoms 4 had eventual recurrence of fatigue after 3 months of modafinil therapy. Thirty-six patients continued to demonstrate symptom relief from fatigue for more than 6 months. In a selective group of patients of OI, modafinil may improve fatigue.

http://www.ncbi.nlm.nih.gov/pubmed/20393343

 

[xchocoholic]

"All these patients had fatigue as their predominant symptom".

Hmmmm. Did they not know the difference between their OI symptoms and fatigue ? I'm going to go out on a limb here and suggest the term hypoperfusion wasn't on the questionaire.

Or most people have never heard of it ? Or they can't feel their upper bodies return to a normal state when they're supine ?

Tx .. x

 

[heapsreal]

"All these patients had fatigue as their predominant symptom".

Hmmmm. Did they not know the difference between their OI symptoms and fatigue ? I'm going to go out on a limb here and suggest the term hypoperfusion wasn't on the questionaire.

Or most people have never heard of it ? Or they can't feel their upper bodies return to a normal state when they're supine ?

Tx .. x

I would liked to have seen conclusive measures like improvement in tilt table testing etc etc
I think some meds like these may help through vasoconstriction etc

 

[xchocoholic]

Great idea @heapsreal .

This study only states that modafinil improved levels of fatigue. A repeat tilt table test would've been appropriate for a study on OI.

Honestly I'm not getting relief from fatigue from modafinil but I've only taking 10 mg at a time so far. Three reasons. Fear of seizure, I was already using caffeine pills (appr 25 mg) for energy and I'm paying $10 for 1-100 mg pill.

If my insurance covered it for OI, I'd very carefully try taking more.

Tc .. x

 

[heapsreal]

Great idea @heapsreal .

This study only states that modafinil improved levels of fatigue. A repeat tilt table test would've been appropriate for a study on OI.

Honestly I'm not getting relief from fatigue from modafinil but I've only taking 10 mg at a time so far. Three reasons. Fear of seizure, I was already using caffeine pills (appr 25 mg) for energy and I'm paying $10 for 1-100 mg pill.

If my insurance covered it for OI, I'd very carefully try taking more.

Tc .. x

Normal dose for whats indicated for is 100-200mg and 200 is the most common dose used. I use 50mg, i dont find it overstimulating but as i have mentioned before, it seems to just turn my brain on and give good cognitive stamina. I just wonder at this low dose it may be helping orthostatic issues. There was an MS study comparing higher and lower doses, the lower doses out performed the higher doses, in ability to reduce fatigue and reduced side effects.

 

[adreno]

Most drugs are overdosed in trials, to make certain that a significant effect can be seen. Then doctors just follow the research dosage after that, when a lower dose might be just as effective, and certainly more tolerable.

 

[helios]

Normal dose for whats indicated for is 100-200mg and 200 is the most common dose used. I use 50mg, i dont find it overstimulating but as i have mentioned before, it seems to just turn my brain on and give good cognitive stamina. I just wonder at this low dose it may be helping orthostatic issues. There was an MS study comparing higher and lower doses, the lower doses out performed the higher doses, in ability to reduce fatigue and reduced side effects.

HR - I looked at this drug a while back as it seemed pretty good for my issues, but it was very expensive from memory. Can ask how much does 50mg a day cost you and do you import it or get it on a script? I just trialled Piracetam and was disappointed in it.

 

[SickOfSickness]

I had some benefit from 25mg or less. It did not last.

For me, it was not very different from stimulant medication, because the benefits had a cost, there was a crash whenever they wore off, and insomnia if I didn't stop them long before bedtime.

 

[fibrodude84]

I'm on 125mg of Nuvigil for a week now and don't find it helping fatigue or my OI. I thought this was supposed to work within hours, should I just give up after my week trial?

 

[heapsreal]

I'm on 125mg of Nuvigil for a week now and don't find it helping fatigue or my OI. I thought this was supposed to work within hours, should I just give up after my week trial?

it should work within an hour or so. I think with just daily use you will just get tolerance to it.
I think its sometimes best to use them on an as needs basis.

I think in your situation i would look at stopping for awhile and try them occassionally here and there. I think if one has a bad level of fatigue or in a crash then nothing much will help other then aggressive resting. I think these meds probably work better for those who are functioning higher then a crashed level.

I wouldnt give up on them yet, experiment abit more with them eg when functioning better u may find then u will get a few more miles per gallon??

I think when one uses stimulant type meds they have to support the mitochondria with supps like q10, acetyl carnitine, creatine, ribose??

If after trying all the above, then save for pennies and move onto the next great cfs adventure, yippy!!!

 

[Desdinova]

Been there tried that.
1/3 of the time it worked
1/3 of the time it did nothing
And 1/3 of time it made my mind feel like it was going 1000 miles an hour.

Their wasn't a generic and the pharmacy charged what Express scripts servers list as the price. Which was double what I would pay going by the pharmacies price.

Never tried Nuvigial Provogials replacement. I've oftened wondered if I would have better results on the newer drug.

 

[heapsreal]

Been there tried that.
1/3 of the time it worked
1/3 of the time it did nothing
And 1/3 of time it made my mind feel like it was going 1000 miles an hour.

Their wasn't a generic and the pharmacy charged what Express scripts servers list as the price. Which was double what I would pay going by the pharmacies price.

Never tried Nuvigial Provogials replacement. I've oftened wondered if I would have better results on the newer drug.

There's plenty of good cheap sources online for modalert. My understanding from reading about others experience is that nuvigial lasts longer?? And there's more than a few that prefer mod over nuvigial. I think for cfs/me low doses are adequate.

Expectations I think play a part in people's experience. I think expectations need to be lower and realize it's more a cognitive helper than a physical energy that some may get from other stims.

 

[zzz]

I think expectations need to be lower and realize it's more a cognitive helper than a physical energy that some may get from other stims.

I think it just varies from person to person. I took Provigil for 8 1/2 years, and it was one of the best drugs I ever took for ME. (I do have OI.) I started at 100 mg, and nine months later went up to 150 mg, which tended to be the maximum dose I could tolerate without insomnia. The biggest improvement I noticed was in my overall energy level, although I did notice cognitive improvements too. My level of activity expanded significantly without causing any additional PEM crashes. Biologically, this makes sense, as one of the effects of modafinil is to increase the amount of ATP in the mitochondria. While I was on Provigil, I needed to nap less during the day, and I was capable of making cross-country trips, which I can no longer do. (Currently, I rarely am able to leave the house.)

Provigil was a great drug for me while it lasted. Unfortunately, my ever-expanding sphere of central sensitivity eventually caught up with it, and I became hypersensitive to it overnight, and couldn't take it any more. Not even a crumb.

My central sensitivity hit my NT factor at the same time, and took that out too. Ouch! That was a double whammy, since NT factor was the second best natural energy supplement I was taking. It helped raise my energy level above what Provigil alone could, without causing insomnia.

Fortunately, my D-ribose (my best natural supplement for energy) escaped this fate. However, whereas before I could vary my dose between 10 mg and 15 mg depending on circumstances, I am now locked into the dose I was taking at the time this reaction hit - 10 mg. I can't take 15 mg, I can't take 12 mg, I can't even take 10.5 mg. All these doses now cause insomnia. But at 10 mg, I'm fine.