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lidiamonroe

Newly Diagnosed Ih - Provigil, Master Cleanse, Flumazenil

6 posts in this topic

Hello,

I've been newly diagnosed with idiopathic hypersomnia (after initially being incorrectly dx with fibromyalgia). But after studying more was disappointed to find IH can be even more difficult to treat than narcolepsy. I'm in a weird hypnotic state all the time and have strong urges to sleep. I fight it all day long. It's been very difficult and has completely put my life on hold.

Dr. prescribed Provigil 100mg in the morning and 100mg at noon. The medicine kept me from falling asleep but did not help with the sleepiness much. Instead of making me feel awake, I felt like I have insomnia (can't sleep but really want to). I also could not sleep for two nights and had to take 3 sleeping pills to sleep the third night. I doubled the dosage and it helped a little more, but not enough to feel awake enough.

1) Was wondering, has anyone had experience with Provigil and if you have any advice? Does the nightime insomnia go away?

2) I also started a cleanse called the Master Cleanse (I'm on Day 5) after reading of several people beating hypersomnia/narcolepsy with it. Anyone tried it? I don't know I guess I'm trying everything I can cause I don't know what else to do. Here's some info on the cleanse:

http://www.mastercleanser.com/forum/viewtopic.php?f=2&t=1376

3) Also, on reading more about IH I found some articles refering to findings that central hypersomnia may be caused by the brain creating a sedative similar to Valium, which can be found in the spinal fluit through a spinal tap. It's treated with an 'antidote' called "Flumazenil" that counteracts the chemical sedative. Once people are treated with Flumazenil, they feel awake again (but have to continue taking the drug). Wondering if anyone's heard of this? Seems like a hope for those who aren't getting relief from other treatments, but I think it may still be experimental at this point.

Some articles about:

http://www.clinicaltrials.gov/ct2/show/NCT01183312

http://en.m.wikipedia.org/wiki/Flumazenil#section_1

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Some people do have a good deal of success in controlling their symptoms by avoiding gluten or other inflammatory foods, as well as carefully watching what chemicals they use on their bodies. This is not universally successful though. 

 

The GABA antagonist study that you linked appears to have been completed, but they did not post any results.  The problem with that drug is that it appears to require intravenous injection. The study you linked said that they were trying a sublingual lozenge, but no other reference I could find mentions any other dosing avenue other than IV. All of the references I could find said that they have not identified what it is in the CSF that is hyperstimulating the GABA receptors, and that it seems to actually stimulates even GABA receptors that are not affected by benzodiazepines like Valium.

 

I can't speak about the night time insomnia. I can count on my fingers the number of times that I have had insomnia even when taking Nuvigil, Provigil or Ritalin. I could take my Nuvigil, wait a couple hours, and take a nap. Just like when I was taking Ritalin, I could have taken 20-30mg, and gone straight to bed.

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1) Was wondering, has anyone had experience with Provigil and if you have any advice? Does the nightime insomnia go away?

2) I also started a cleanse called the Master Cleanse (I'm on Day 5) after reading of several people beating hypersomnia/narcolepsy with it. Anyone tried it?

3) Also, on reading more about IH I found some articles refering to findings that central hypersomnia may be caused by the brain creating a sedative similar to Valium, which can be found in the spinal fluit through a spinal tap. It's treated with an 'antidote' called "Flumazenil" that counteracts the chemical sedative. Once people are treated with Flumazenil, they feel awake again (but have to continue taking the drug). Wondering if anyone's heard of this? Seems like a hope for those who aren't getting relief from other treatments, but I think it may still be experimental at this point.

 

Welcome to the forum. Sorry I'm so belated in sharing my two cents... but here goes :)

 

1) Insomnia from Provigil can often be resolved by taking the dose earlier in the day. Rather than 100mg in the morning and 100mg at lunch you might find 200mg upon waking does the job better without the insomnia. Talk to your doctor about that first though, as with any med changes :)

 

2) I've found diet changes/cleanses/detoxes do little to nothing for my idiopathic hypersomnia. Lots of people with Narcolepsy seem to benefit from cutting out gluten but IH seems to be a different beast in that respect.

 

3) I'm currently taking flumazenil and it is wonderful! If you want to see a quick video, I recorded this on Day 1 of my use of Flumazenil ->

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That cleanse might cut the effect of the Provigil. You might just end up cleansing the med. Provigil has to be eliminated hepatically though, so it might not have any effect. You might ask a doc or pharmacist about that one.

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I agree that upping the am dosage to 200mg should help.  Perhaps you could ask your doctor about nighttime help with melatonin or other similar herbals.  Its over the counter and is widely recommended by physicians.  

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I don't know if this is of any assistance but I was also at 100 mg Provigil upon waking and lunch time along with two amphetamines at the same time (total of six stimulants). At night I did have to take Xanax with Ambien (though some doctors really freak out about that combination) and that worked for many years....eventually my insomnia worsened so badly I went on leave from work...couldn't get through to dr ... went to another dr and that's when I received the narcolepsy diagnosis. 

 

I really hope you find an answer that works for you!!

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