Whitney Dafoe and Ativan. Can someone explain?

Chfrazzle

Active Member
Yesterday I read the news about Whitney Dafoe and his momentary improvement when he is taking Ativan. When I first saw the article I read Ativan but my brain was thinking Adderall. It wasn't until I had a chance to read the complete article that I realized it was actually Ativan, a benzo. In most of us this drug would cause us to be more tired and less physically functioning. In Whitney's case it provided him more energy and he was actually able to communicate somewhat with his parents. (I can't imagine how amazing that had to be for Ron and Janet.) His response is not typical. Can anyone explain why his body may have responded this way? Is his brain so nervous and overstimulated that his body has shut down and the Ativan allowed him some calmness and ability to communicate?
 

Anthony Ross

New Member
I am also interested in this as clonazapem does the same for me. I am completely bed bound and have had periods of months at a time when I am too weak to talk at all. I can currently talk in short sentences but only a few times a day. But after I take clonazapem as well as the expected calming effects it also strengthens me for a few hours allowing me to talk much easier and do more leg movements in bed...
 

Remy

Administrator
I am also interested in this as clonazapem does the same for me. I am completely bed bound and have had periods of months at a time when I am too weak to talk at all. I can currently talk in short sentences but only a few times a day. But after I take clonazapem as well as the expected calming effects it also strengthens me for a few hours allowing me to talk much easier and do more leg movements in bed...
You might find this interview with Paul Cheney interesting. I'm not sure what it is about Klonopin in particular that has this kind of energizing effect, but it's commonly reported.

That said, I think Cheney wayyy understates the risks of benzos in this piece.
 

Issie

Well-Known Member
It moderates glutamate/GABA. I really think there is a dysfunction in this area with many of us. I know there is with me and my family. I found a blog of someone who made the connection in their family. But she says - long term use of these drugs will make us more sensitive. I know what I take affects this channel and is my best helps.
https://nourishedblessings.com/supplements/
Issie
 

Anthony Ross

New Member
Thanks everyone for your contribution. I had read some of the Cheney ideas. @Issie I think I have a lot of similar issues to you as I think I saw you on the dysautonomia forum. I am very interested in the ideas of messed up neurotransmitters as I have severe dysautonomia including really bad shaking from what seems like the smallest stressors (I can get shaking episodes from simply waking up). I failed a tilt table and think I am likely hyperadrenergic but haven't had neuronepherine tested. In your above post what is the supplement you have found most helpful? I'd be keen to hear what you are trying and anything you find helpful.

Also on the s4me forum one contributor said that at a recent conference Ron Davis said that they found Ativan increased ATP (I think they found it on nano needle testing) and that is why they gave it to Whitney.

I wonder since GABA has been found to down-regulate T cells and cytokine release that it might be related to Mike Davis T cell expansion hypothesis...
 

Issie

Well-Known Member
With me, I paradox with GABA or anything that tries to up it. It does the opposite . Appears that some issues with different methylation, calcium and ion channels can cause this to happen with some. (They also find this to happen with Autism.) Trying to moderate glutamate with diet and supplements help. For me, my best medicines for POTS is a very, very low dose of Tramadol and Bentyl. The combo works best. I also cycle and come off them when they stop working, for my body to reset. I refuse to increase them and don't want to build a tolerance and them stop working. I don't take enough for it to help my pain with EDS and FMS. My goal with them is to calm the sympathetic system. It works for me and doesn't seem to affect my thinking ability or to adversely affect blood flow. Bentyl is a mild muscle relaxer given for IBS. My docs at Mayo were intrigued that I said it seems to help with FMS, as that wasn't a medicine they had used for that.. Tramadol tweaks all the neurotransmitters. It also tweaks NMDA. It too has a mild calcium channel blocking effect. GastroCrom does also. That was my turning point with POTS. Addressing MCAS made a huge difference. It is very expensive though. There is a nasal spray of Chromyln that has helped some. But that alone is not enough to stabilize mast cells. I take an Allegra and 1/2 Zantac nightly.
Addressing CIRS and Lyme has also put me on a more stable path.
I also find staying low oxalate and low lectin to be of benefit. That automatically makes you be low amylose - diet for CIRS.
I've done alot. Too much to write about here. I'm much better - but still not where I'd like to be.
You probably have seen me on DINET. I was on there for years. I don't do any of the forums much any more. I'm still available to others if they have questions. But mostly in the background hanging out.
Issie
 
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Anthony Ross

New Member
Cheers Issie... what supplements do you use to lower glutamate?

You saying that you get a paradoxical effect from gaba reminds me that when I tried a tiny dose of baclofen which works on gaba b I had a terrible reaction causing severe tachy and shaking which is opposite effect I get from clonazapem. It’s really shaken my confidence in trying things as my nervous system is now getting triggered by tiny things again.
 

Issie

Well-Known Member
That one moderates GABA too. But maybe it does it in a little different way and swings things in a better direction for you.
I have to be careful with Bentyl as it can cause me to get the blues. It is also a depressant. Tramadol moderates all the neurotransmitters. But it is considered a class 4 opitate. When Mayo put me on it for FMS and EDS it wasn't in a class. In fact, they weren't sure how it even worked. I never took it as prescribed, that would have been way to much for me. (Interesting that the protocol Cort just got put on has Tramadol as one of the medicines. ) There have been several POTS people try this. For some it was a horrible experience. For one guy, he took too high dose and was out for days. When he lowered it, he got benefit like I do. Some Others found a low dose helpful. I'm talking 1/2 of a 50mg. Maybe a whole pill. But keeping it low and cycling when it stops working. I've spent years trying to figure out the science. I think it has to do with glutamate and calcium channels, as to why it works for me. If it's a really bad day, I'll take 2 pills in a day. This is wayyyyyy less than what I was perscribed. Mayo, no longer will perscribe this to patients. But my primary doc manages it now.
I have spent lots of money and done lots of trials on supplements and medicines too. Most things have not worked. I'm a bit of a rebel when it comes to treating POTS. I don't agree with a lot of things being done. (But, I have tried most all of them. ) With this illness and the intensity it can bring - we will "grasp at straws" in desperation at times. But as I develed more into the science, some things just don't/didn't make sense. I don't do them. I have my bad days.....but, maybe have more good than some others doing a whole lot of other treatments.
Look at your foods and keep a food diary. See if something you are eating or drinking could be triggering something. Many times, my tremors are mast cell related. See if staying low on oxylates and lectins helps. I'm also grain, dairy and sugar free. Staying off nightshade helps with pain considerably.
Issie
 

Danesh

Active Member
I am helped by my evening dose of Clonazapam (Klonopin), and slowly reducing it, I am worsening. When it gets in my system, before it helps with sleep (with LDN I can take less), my brain "wakes up", and I can often think better, talk some, read more, write, watch part of a movie for longer than a few minutes. It is used to treat sensory overload, which I have. It is the only way I can handle going out to an appointmet where I have to be somewhat alert. Or have my grandkids and son & wife over for a very short visit. I take a tiny bit of caffeine at the same time, and the combo heps me get through the visit. Otherwise, I'm in my quiet room alone, shades drawn. I hate hearing the bad reports, brain atrophy. ME causes that as well. I am desperate to find a safer alternative that actually works for severe sensory overload. But nothing found yet. When I saw that report about Whitney and the Ativan, I understood completely. I wish it would help him more.
 

Issie

Well-Known Member
@Danesh , another AZ person. It has been miserably hot here this summer and the monsoons awful.
Brain atrophy can also occur with CIRS. Inflammation can cause it. Sorry you are dealing with this.
Issie
 

Not dead yet!

Well-Known Member
Yesterday I read the news about Whitney Dafoe and his momentary improvement when he is taking Ativan. When I first saw the article I read Ativan but my brain was thinking Adderall. It wasn't until I had a chance to read the complete article that I realized it was actually Ativan, a benzo. In most of us this drug would cause us to be more tired and less physically functioning. In Whitney's case it provided him more energy and he was actually able to communicate somewhat with his parents. (I can't imagine how amazing that had to be for Ron and Janet.) His response is not typical. Can anyone explain why his body may have responded this way? Is his brain so nervous and overstimulated that his body has shut down and the Ativan allowed him some calmness and ability to communicate?

I recently read about the use of zolpidem (Ambien) to temporarily wake people who have been in a coma for a long time. Damaged nerves and brains seem to respond by being stimulated by downers. I noticed that I was being put on a lot of benzo, muscle relaxers, etc when I was first looking for diagnosis. It seems that it helps some people. Apparently my migraine mind doesn't work the same, it helps me less than I would expect.
 

Issie

Well-Known Member
This is an update to what I said above for the supplements I use in regard to MCAS. I'm no longer using antihistamines. Trying to reset histamine receptors. Actually using things to increase histamine to trigger my H2 receptors to kick in, but not have my own body release its histamine. There is a thread about this on the forum.

Seldom using Tramadol or Bental either. But do keep them on hand for a really bad day. And if I have a MCAS "attack" that I don't get on top of, fast enough, GastroCrom is still my fast, Emergency, go to.
 

JES

Member
Whitney Dafoe has regained ability to do small things like typing Facebook posts with the help of the drug Abilify, thought it would be relevant to the topic. I believe he is no longer using Ativan or at least uses it sparingly due to the tolerance it induces. Abilify does not have similar issues with tolerance, so it might be of more interest, there are quite a few threads going on about it now on various ME/CFS forums.
 

Chfrazzle

Active Member
Whitney Dafoe has regained ability to do small things like typing Facebook posts with the help of the drug Abilify, thought it would be relevant to the topic. I believe he is no longer using Ativan or at least uses it sparingly due to the tolerance it induces. Abilify does not have similar issues with tolerance, so it might be of more interest, there are quite a few threads going on about it now on various ME/CFS forums.
Thank you Jess. Does anyone know if there is any link between how Abilify affects the brain and the research that Jared Younger at UAB is doing?
 

Issie

Well-Known Member
I know the research he is doing is to look at brain inflammation, right now. It is different types of MRI to do that. There are a couple drug trials going on. But I don't believe it's this one.

This medicine regulates dopamine at D2 receptors, mostly. Also affects seratonin some too. Appears it can up or down dopamine. It is considered a type of antipshychotic medicine.
 

Issie

Well-Known Member
Back in 2011 on the DINET forum for POTS, we were discussing Dopamine. I had felt there were issues on D2 back then. I also found that Tramadol is/was one of my best POTS medicines. It also helps regulate Dopamine.

 

Issie

Well-Known Member
Another old pondering about issues with dopamine.

 

Chfrazzle

Active Member
Back in 2011 on the DINET forum for POTS, we were discussing Dopamine. I had felt there were issues on D2 back then. I also found that Tramadol is/was one of my best POTS medicines. It also helps regulate Dopamine.

In which way does the Tramadol help you?
 

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