Mestinon + Famvir - whoa!

[BadBadBear]

I've had similar psychic experiences... I don't know if they are better described as dissociation or depersonalization. I felt very disconnected from external world, it didn't feel convincingly real to me and my brain didn't seem to be processing the incoming sensory information in the right way. It's as if I could make sense of it logically but not enough energy to process it through feelings.

Yes, I have the same thing. I can process logically, but emotions are completely disconnected. Sometimes I remember what happened to me, but for years on end I have completely forgotten. I associate the worst symptoms of dissociation, depersonalization, etc. with low energy periods (related to low thyroid). My brain just can't hold it all together and suppress all of it in that situation and things 'leak' out, detatched emotions, detatched anger, etc.

For me, having moments of intense inner emotionality (usually with crying spells) and strong feelings about my past happened on the way to brain function improvement - so take it as a good sign.

This is what I experience after the riding clinics - bits of things coming up, or just a bunch of turmoil with no connection to it, and lots of crying which I feel like is the trapped emotion surfacing. It does seem to help. Just sucks, I hate crying. Especially when I can't really connect what I feel or why I'm crying.

The interesting thing at the clinic was I had been feeling severely frustrated for about 24 hours, I could not even tell you why, but they the fog finally broke and the dissociation stopped. Somehow the frustration seemed to be a tool.

I agree with you that it's a terrible state to be in, and I think I'm still scarred by the whole experience but it also gave me a new perspective on myself and life in general. In the end, I've chosen to view it as a spiritual experience.

For me its an end to a long toxic family line that was severely abusive, and I'm finally the one that can break the cycle (no children) AND have not lived a life of abusiveness. Not much fun being the genetic and epigenetic and behavioral family dump, though.

I am sorry that you have this experience, too. It affects us so profoundly and in ways we can never really communicate. Lots of love to you, @Iritu1021.

 

[Iritu1021]

Yes, I have the same thing. I can process logically, but emotions are completely disconnected. Sometimes I remember what happened to me, but for years on end I have completely forgotten. I associate the worst symptoms of dissociation, depersonalization, etc. with low energy periods (related to low thyroid). My brain just can't hold it all together and suppress all of it in that situation and things 'leak' out, detatched emotions, detatched anger, etc.



This is what I experience after the riding clinics - bits of things coming up, or just a bunch of turmoil with no connection to it, and lots of crying which I feel like is the trapped emotion surfacing. It does seem to help. Just sucks, I hate crying. Especially when I can't really connect what I feel or why I'm crying.

The interesting thing at the clinic was I had been feeling severely frustrated for about 24 hours, I could not even tell you why, but they the fog finally broke and the dissociation stopped. Somehow the frustration seemed to be a tool.



For me its an end to a long toxic family line that was severely abusive, and I'm finally the one that can break the cycle (no children) AND have not lived a life of abusiveness. Not much fun being the genetic and epigentic and behavioral family dump, though.

I am sorry that you have this experience, too. It affects us so profoundly and in ways we can never really communicate. Lots of love to you, @Iritu1021.

Lots of love to you too, BadBadBear!
I think that's what it is - the piled up emotions that were not properly processed due to amygdala or some other parts of the brain that come rushing in once the proper channels open up. At least that's how my left brain hemisphere looks at it, the right hemisphere got its own opinion on that and tries to channel it into creativity

 

[BadBadBear]

I think that's what it is - the piled up emotions that were not properly processed due to amygdala or some other parts of the brain that come rushing in once the proper channels open up.

Have you read this article?

http://www.psychiatrictimes.com/dis...ociative-states-posttraumatic-stress-disorder

Little snippet:

"The most remarkable findings in these 2 studies are the opposite patterns of brain activation. The more typical reexperiencing/hyperaroused group exhibited abnormally low activation in the medial anterior brain regions that are implicated in arousal modulation and emotion regulation more generally (ACC and medial prefrontal cortex), while the dissociative group exhibited abnormally high activation in these regions."

 

[Iritu1021]

Have you read this article?

http://www.psychiatrictimes.com/dis...ociative-states-posttraumatic-stress-disorder

Little snippet:

"The most remarkable findings in these 2 studies are the opposite patterns of brain activation. The more typical reexperiencing/hyperaroused group exhibited abnormally low activation in the medial anterior brain regions that are implicated in arousal modulation and emotion regulation more generally (ACC and medial prefrontal cortex), while the dissociative group exhibited abnormally high activation in these regions."

Very interesting! I have a friend who is a psychologist and specializes in treating DID so I will forward to her. I still can't really tell if what I had was dissociation, depersonalization or derealization. It seems that most of her DID patients do not seem to remember their dissociative episodes, while I just felt like my personality and relationship to the world was changing depending on my thyroid levels and I had to accommodate all those different perceptions in one brain but I never really had any memory gaps... But it probably has some shared mechanism.

 

[BadBadBear]

Tiny update is that I'm starting to be able to work in the garden. My ability to do anything that involved bending had been in decline for the past 5 years due to NMH & syncope. I had struggled the first two years of my illness, and then had given up and not even tried to work on my garden at all for 3 years.

I thought I'd start at 10 minutes doing a little cleanup, and have gone right up to being able to work for an hour or two (!) fixing the old drip lines, etc. and getting the water turned back on to the plants that haven't died.

This improvement in the NMH is quite distinct. My blood pressure is clearly recovering after bending.

 

[Iritu1021]

that's great news! so glad to hear you keep getting better

What dose of T4 are you taking right now in terms of mcg/kg? I'm still only on 1 mcg/kg but I want to try work slowly to at least 1.5 mcg/kg, maybe even 1.7 mcg/kg.

 

[BadBadBear]

that's great news! so glad to hear you keep getting better

What dose of T4 are you taking right now in terms of mcg/kg? I'm still only on 1 mcg/kg but I want to try work slowly to at least 1.5 mcg/kg, maybe even 1.7 mcg/kg.

Thanks, I'm right at 1.6 mcg/kg T4, 4 mcg total of T3 but have not yet done labs. My last dose change was about 3 weeks ago, I plan to do labs at the end of June.

I still have a dead zone in the afternoon where I do better if I sleep. Not sure if that's hypo or just plain old fatigue. I also usually have low cortisol at that time of day, and have not retested cortisol for a while. I will probably do that when thyroid is optimal and stable.

Thank you again for suggesting looking at Blanchard's work.

 

[Iritu1021]

Thanks, I'm right at 1.6 mcg/kg T4, 4 mcg total of T3 but have not yet done labs. My last dose change was about 3 weeks ago, I plan to do labs at the end of June.

I still have a dead zone in the afternoon where I do better if I sleep. Not sure if that's hypo or just plain old fatigue. I also usually have low cortisol at that time of day, and have not retested cortisol for a while. I will probably do that when thyroid is optimal and stable.

Thank you again for suggesting looking at Blanchard's work.

By the way, I'm now off T3 completely. I take low dose Strattera (norepinephrine reuptake inhibitor) increases my T4 to T3 conversion but without daily up/down rollercoaster that I got from T3 (although using the slow release and micro-dose capsules made it much more tolerable).

With a bunch of conversion friendly supplements Strattera my T3 went up from 3.0 to 3.4 naturally and I had to stop my last tiny remnant of T3. Even at 3.4 I think this is probably higher than what I need, at least with my current T4 level because my T4 dropped from 1.6 to 1.4 as a result of increased conversion so I've increased my dose. I wonder if tyrosine might work just as well as Strattera since it also increase NE.

I don't know if you've seen this but I put together a table of 30+ drugs and supplements that can affect peripheral deiodination.
http://www.chronicfatiguediagnosis.com/2018/06/04/peripheral-deiodination-table/

 

[BadBadBear]

This update is written at ~8 months of being on Famvir and Celebrex.

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Thyroid stuff:
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I am now completely stable on a combo of T4 and a little bit of T3 (4 mcg per day). Labs show I'm above midrange for both T3 and T4, however my TSH is back to being fully suppressed. My doc thinks my pituitary may not be putting out correct amounts of TSH and that it may correct itself over time. She is happy with my labs and advised me to stay on my current thyroid med dose.

------------------
Energy stuff:
------------------
My energy has continued to improve. I am starting to be able to ride my mountain bike, just a little on the gravel road. I can currently bike a couple of miles a day, not pushing it (and broken up into a few small rides, not one long one). My legs feel noticeably normal and not heavily fatigued. I was surprised the first time I turned back uphill and my legs felt normal.

As well, I have been able to ride my horses more. The activity tracker I wear picks up steps the horses and I both take, and I have had a few days of 30,000 steps when I've been able to ride for 5-6 miles and do my regular stuff. This is the highest activity levels I have had since being sick.

I've had days where I drive myself an hour each way, and ride my horse for an hour and don't feel dead when I get home. My activities have increased from 1/2-1 per day maximum to about 4-5 per day maximum. Meaning I can do chores, ride, rest, go to town, rest, ride again!, rest, and do evening stuff.

I still have to build in rest and feel best if I can sleep in the afternoon. I put my blackout mask on and do my best to fall asleep for an hour or so, then I generally rebound.

Last night was the first that I've had a glass of alcohol since I started Famvir, I had a taster of my friend's wine and half a flute of champagne (birthday party for my friends) and was able to sleep and did not have terrible palpitations nor that terrible drunk feeling that one glass of anything used to give me.

So overall, I'm really impressed at the progress, but also have this feeling of dread that the other shoe is going to drop and I'll be sick again. I wonder if THAT feeling ever goes away!

 

[frozenborderline]

I've had similar psychic experiences... I don't know if they are better described as dissociation or depersonalization. I felt very disconnected from external world, it didn't feel convincingly real to me and my brain didn't seem to be processing the incoming sensory information in the right way. It's as if I could make sense of it logically but not enough energy to process it through feelings.

Early in my illness when I was taking stimulants, I felt like I was autistic - which is very opposite of my pre-illness personality. I used to be very much of a feeler most of my life and found it easy to read people and then I lost those seemingly inherent skills.

For me, having moments of intense inner emotionality (usually with crying spells) and strong feelings about my past happened on the way to brain function improvement - so take it as a good sign. What really helped me to get through the dissociation was Jungian psychology, Myer- Briggs and learning about different cognitive functions, and how they process the world in different ways.

I never took any antivirals, to me it always felt like a bad case of hormone and neurotransmitter imbalance in the brain. Short course of lithium orotate also seemed to have helped with my brain function though I think it made my thyroid function worse but I think I used too high doses.

I agree with you that it's a terrible state to be in, and I think I'm still scarred by the whole experience but it also gave me a new perspective on myself and life in general. In the end, I've chosen to view it as a spiritual experience.

Interesting. Mostly I've had severe, severe physical symptoms more than brain fog or depersonalization symptoms. I did briefly consider phone consult with a Jungian psychologist. I don't really necessarily "believe in" jungianism but it seems less destructive than other forms of psychology/therapy/etc... Jung's red book is interesting.

Couldn't handle stimulants besides caffeine post-illness though

 

[Dechi]

Mestinon plus Famvir. Sounds a lot like Dr Pridgen's protocol.

@aquariusgirl would you have a link to that protocol? I’d be interested to learn about it.

 

[BadBadBear]

I am now a year and a few months into my Famvir + Celebrex treatment. Currently at 1 g Famvir, 100 mg Celebrex.

My activity level has dropped some, I have not been doing as much walking, however I am still tolerating long activity intervals. I can tolerate the occasional full day of activity, which was not at all possible before.

I still need rest days and recliner time. I will still get sore throats and viral symptoms when I overdo it. I still have some PVC's and shortness of breath.

I recently re-started going to the gym to lift weights and to do some very carefully controlled "cardio". Right now, it's 7 minutes on the recumbent exercise bike, with my heart rate in the 80's max. My plan is to work up to 20 minutes, then ever so slowly increase my max heart rate up toward 115 or so (for brief intervals at first) and then ultimately go no higher. Just want my heart and lungs to have whatever mild conditioning they can take. I get really sore from weights, and am trying to leg up carefully.

Recently I discovered I am frankly deficient in inositol and have been trying to get my stores full (apparently it can take months) and am tolerating other B vitamins better as well. Hopefully this will be a rising tide for me, however small.

Sleep is good, I need to do thyroid labs but my sense is they are good.

I am not cured, but am so much better than I was in 2017.

 

[Iritu1021]

I am now a year and a few months into my Famvir + Celebrex treatment. Currently at 1 g Famvir, 100 mg Celebrex.

My activity level has dropped some, I have not been doing as much walking, however I am still tolerating long activity intervals. I can tolerate the occasional full day of activity, which was not at all possible before.

I still need rest days and recliner time. I will still get sore throats and viral symptoms when I overdo it. I still have some PVC's and shortness of breath.

I recently re-started going to the gym to lift weights and to do some very carefully controlled "cardio". Right now, it's 7 minutes on the recumbent exercise bike, with my heart rate in the 80's max. My plan is to work up to 20 minutes, then ever so slowly increase my max heart rate up toward 115 or so (for brief intervals at first) and then ultimately go no higher. Just want my heart and lungs to have whatever mild conditioning they can take. I get really sore from weights, and am trying to leg up carefully.

Recently I discovered I am frankly deficient in inositol and have been trying to get my stores full (apparently it can take months) and am tolerating other B vitamins better as well. Hopefully this will be a rising tide for me, however small.

Sleep is good, I need to do thyroid labs but my sense is they are good.

I am not cured, but am so much better than I was in 2017.

Glad to hear that you're still doing well.
It's interesting that you mention inositol because IP3 (inositol triphosphate) is involved in intracellular calcium release from endoplasmic reticulum - something that we were discussing at length here and @Inara is currently getting tested for IP3 receptor mutation.
@pattismith

 

[BadBadBear]

Time for an update. I now have been on Famvir + Celebrex for approximately a year and a half. My most significant nutrient find was discovering I was low on inositol last year. After adding that in, it seemed to change my whole immune system and thyroid functioning. Everything changed.

I have transitioned from T3 only over to T4+armour and now over to T4 only. I am due for labwork to see how T4 only is working, but I have been feeling OK. This is a huge change as I've needed some amount of T3 since I've been ill. If my labs look good, I'll be looking at reducing T4 as much as possible very slowly to see what my base need is. I'm currently on 125 mcg.

My need for Famvir has dropped dramatically. I am currently taking 250 mg per day, only 1 time per day. I have not had any viral symptoms in quite some time. Since I usually flare in February, I'm apprehensive but hopeful. I have been on this dose all winter and it seems to be OK.

I do still need Celebrex at night, otherwise, I get sore and achey and dont sleep well. I don't need a daytime dose of it.

So I have cut down the famvir to 1/4 of the initial dose, and the Celebrex to half!

My activity level has been really good, I still rest during the day as needed, but for example today, I also did AM chores, pulled out my snowshoes from storage and went 1/2 mile (ugh, not in shape for that yet), then walked another 1.7 miles immediately after. I am getting ready to go fire up the tractor to plow snow and do more chores.

I feel like I can do a pretty normal level of stuff now, and seem to be slowly gaining in my capacity for light exercise. My longest walk was 4 miles (!) a couple of weeks ago and that included hills. I had not planned to go that far, it was sort of an accident. However, there was no 'payback' the next day for overdoing it. I didn't get sick or feel virused.

I did quit going to the gym because I preferred to be home and walk, and doing both was just too much effort.

That said, I have had a regular old cold this winter, but again there doesn't seem to be follow up 'payback', previously I could have expected months of swollen glands and sore throats. This time, the cold is just over, with no lengthy problems after.

I am hoping that I will follow the models predicted by Dr. Lerner and continue to improve for the next 6 months. I will be sure to post a followup somewhere along the way!

Now I don't know if I am or will be cured, but being able to even ask the question is very, very positive.

 

[Iritu1021]

That's awesome to hear!

I'm very interested in the inositol part of this (it's one of the supplements on my list to try)- can you please elaborate on what dose you took and how long till you noticed changes?

I'm also curious, did your MPD/dissociative symptoms improve as well?

 

[BadBadBear]

That's awesome to hear!

I'm very interested in the inositol part of this (it's one of the supplements on my list to try)- can you please elaborate on what dose you took and how long till you noticed changes?

I'm also curious, did your MPD/dissociative symptoms improve as well?

There is a thread on inositol where I posted my journey with it, from ~500 mg up to 10 g, which caused hypomania, then back to 2g and I've worked up slowly and stayed at about 4g now for a while with no hypomania.

I have not noticed much dissociation but its difficult to know if it is lack of triggers or really is better. I can tell you for sure in May as I'll be around someone who sets it off really badly every time. My brain thinks he's someone from my past, but he is not. That will be something of a litmus test.

I also should add that I tolerate a lot more caffeine now as well, full strength coffee is ok! That also happened with inositol.

 

[Mel9]

This is a really interesting and useful thread, thanks for your excellent detailed notes.

I have tried to read it all but seemed to have missed some important steps.

As someone who has found Mestinon a ‘game changer’ would you please outline why you stopped taking it?

 

[BadBadBear]

This is a really interesting and useful thread, thanks for your excellent detailed notes.

I have tried to read it all but seemed to have missed some important steps.

As someone who has found Mestinon a ‘game changer’ would you please outline why you stopped taking it?

Hi Mel, if I remember correctly, it lowered my BP and HR which is listed as a rare side effect. I tried midodrine for a while after this, so I think it had to do with BP.

 

[Mel9]

Hi Mel, if I remember correctly, it lowered my BP and HR which is listed as a rare side effect. I tried midodrine for a while after this, so I think it had to do with BP.

Yes, That makes sense. My BP and HR went down too but they were both too high so it was a good change in my case.

 

[Iritu1021]

There is a thread on inositol where I posted my journey with it, from ~500 mg up to 10 g, which caused hypomania, then back to 2g and I've worked up slowly and stayed at about 4g now for a while with no hypomania.

I have not noticed much dissociation but its difficult to know if it is lack of triggers or really is better. I can tell you for sure in May as I'll be around someone who sets it off really badly every time. My brain thinks he's someone from my past, but he is not. That will be something of a litmus test.

I also should add that I tolerate a lot more caffeine now as well, full strength coffee is ok! That also happened with inositol.

I am pretty sure it will make me hypomanic too then, but perhaps I can get an occasional controlled hypomania if I combine it with a stabilizing agent like gabapentin... I got hypomanic just from traveling to Costa Rica last week and getting sun exposure and shifting my circadian clock to an earlier sunrise abruptly to one hour earlier. Now I've been rearranging furniture and doing spring cleaning in february... until my "wise voice" told me to go take some gabapentin and lay down... it's crazy how easy it is to ignore physical symptoms when they are mood-congruent. High heart rate can be perceived as a state of energy and excitement when it's congruent with euphoric state, and as unpleasant POTS state when it's associated with "incongruent" dysphoric low energy state... I don't fully understand this phenomenon but I got the idea about "physical - mood" bipolar state incongruence from reading James Phelps work - and after reading it I've become more aware of it in myself.