Arbor: dealing with PAWS

[ChessieCat]

11 minutes ago, arbor said:

Intermittent fasting:  16 hours between dinner and breakfast.

 

From https://www.newhealthadvisor.org/symptoms-of-not-eating-enough.html

 

Symptoms of Not Eating Enough:

 

1. You Have Low Energy

5. You Experience Quick Mood Shifts

8. You Cannot Sleep Comfortably

9. You Feel Depressed

12. You Experience Headaches

 

and

 

This webpage has a diagram showing where and how the body can be affected:

 

https://www.healthline.com/health/low-blood-sugar-effects-on-body#1

[mstimc]

Hi Arbor

 

It sounds like you are really putting the effort into recovery and doing the correct practices.  It really is a matter of finding the right tools that work for you in a given situation.

 

One interesting thing I've learned recently.  I've been taking an online life visioning course, and the instructor said the universe will always send you what you're interested in, even if what you're interested in isn't what you want.  If you seek recovery, you'll find it.  It sounds like that's exactly what you're doing.  A lot of people, caught in the abyss of WD, adopt such strong negative thought patterns they can't see a way forward even if the go through the motions of CBT or EMDR.   By the way, I did EMDR with my therapist and it really helped.

 

Come here as often as you like--we're always here to support you!

[arbor]

15 hours ago, ChessieCat said:

 

From https://www.newhealthadvisor.org/symptoms-of-not-eating-enough.html

 

Thank you, ChessieCat--this could be a sleep culprit.  I'll try giving it up and see if I sleep better.

Best wishes,

Arbor

[arbor]

Hi @mstimc Thank you so much for your comments.  I'm grateful to you and your journey--and also your generosity in taking on being a Mentor.  

5 hours ago, mstimc said:

caught in the abyss of WD, adopt such strong negative thought patterns they can't see a way forward

This is a powerful reminder to me--when my thoughts are especially dark--to remember not to bog down in them, and further hamper recovery.

May your day be bright and calm,

Arbor

[DataGuy]

Thanks for your detailed response @arbor. I think you are doing as much as anyone could reasonably expect to try and recover. As @ChessieCat noted, fasting can indeed increase anxiety symptoms and create energy, mood or sleep problems. I think most of these are all pretty easily solved by eating more. As long as it is not creating more problems than it is solving, I think fasting is fine. I believe the NHS has recently rolled it out as a treatment for type II diabetes, although I'm not sure I would advocate eating as little as 800 calories, as they suggest there. 

 

Protracted withdrawal is a tough nut to crack. I don't think there is any miracle treatment. Mostly people just need to wait it out and do what they can to allow the body to heal itself. I think you are doing a great job. I wouldn't want to nitpick a program that is working for you. The only thing I worry about with some members is overuse of supplements. Hard to know what impact they have on recovery or even symptoms long term, since nothing is really tested. All I can tell you is that most drugs/supplements/compounds tested as treatments for illnesses fail safety tests or fail against placebo somewhere along the line in clinical trials. I think something like only 1 out of 1000 things tested makes it to market. Even among the drugs that make it to market, most of the them are not terribly useful. So I think we should be skeptical about the benefit of taking untested supplements long term to improve health or recovery. Ideal testing would involved a very large, long term randomized controlled trial. Trials for statins (cholesterol drugs), for example, lasted for about 4-5 years and showed a minor reduction in all-cause mortality. All of this is to say it is very tough to improve on your natural biology : ). I think it is difficult to fully flesh out the argument here, but it is based on my reading of books like "Medical Reversal" by Vinay Prasad MD and Adam Cifu MD and "Medical Nihilism" by Jacob Stegenga PhD. I don't think you could ever call either of these books a page-turner (or even an easy read), but they are a great inoculation against the pharmaceutical-medical industry's mission to drug seemingly everyone for every problem. I find them interesting, for what it's worth : ) It is tough to get rid of the mindset of "needing to take something", since we are bombarded with that idea from our very first contact with doctors (unless you have had a particularly good one). Experiencing severe adverse drug reactions is also a great inoculation, but I think we have that one covered 🥴

 

One thing you learn from those books is that biological test results (ie like minor vitamin deficiencies, imaging results, IGF-1) are pretty overrated indicators of health. Some are useful of course. Very elevated BP is definitely bad. Slightly elevated BP (130-139) systolic is not a terribly good predictor of mortality (one study I looked at showed a barely recognizable increase of somewhere around 3% relative risk, I think? I can dig that up if you like). This was one of the first studies I found when I googled it: https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2663255, showing pretty minor benefits even for pharmacological treatment of high BP.

 

But now I am probably boring you! Sorry for the book length response, of which I hope at least some part was relevant. I look forward to seeing you get back to full health. In the meantime, you have been a very nice positive presence on the site . Helping others is definitely a coping strategy with a positive benefit!

[arbor]

I'm so appreciative of this response, @DataGuy.  Really helpful.  Also good of you to take the time to share this info.  I look forward to looking into these books.  Wish their investigations were being made more public.  In the same vein, it was when the cardiologists started pushing stents that I declined and started the research that connected heart issues (and other problems) to the AD's.  (A recent study associates the gut flora disruption caused by AD's to the fibrosis that can develop elsewhere in the system.)  I hear in your response a wise skepticism about all studies, med's, and supplements.  Thank you for that, plus your support--and everyone else's--helps me stay patient.  One thing I've noticed is that certain thoughts can raise cortisol levels, true, but now I really recognize that systemic, high levels of stress hormones--like these caused by PAWS--can hijack thoughts.  Especially when I'm lying down at night, the cycle can be vicious.

 

We're all trying to ride this out.  For me, I'm trying to reclaim what's salvageable, which has brought up a huge amount of grief for what may not be, and how to live positively without it.

 

(For now allow me to say that every time I hear another doctor trot out the formula: "The benefits outweigh the risks" (As who determines it?  And how can they when the risks are so radically unknown or suppressed?) I want to start throwing things.  There, I feel better--though not for everyone else coming down the pike.)  I hope the best for your Mom and her diabetes.

 

Warmly,

Your friend, Arbor

[mstimc]

On 12/16/2020 at 12:36 PM, arbor said:

We're all trying to ride this out.  For me, I'm trying to reclaim what's salvageable, which has brought up a huge amount of grief for what may not be, and how to live positively without it.

Arbor, I've come to a realization during WD and recovery...mourning what we could have been has no value.  Any number of major and seemingly meaningless events change us every day.  Where the value lies is in accepting and  learning from all these events and building ourselves into who we want to be.  Before recovery, I wasn't the most empathetic person  in the world.  My experience has taught me to much more sympathetic and patient with others, especially those who may be going through their own traumas. It also taught me perspective--to separate minor issues from major problems, and the confidence I can handle both.  You can be a stronger person who is much more connected with the rest of humanity--its not a matter of living without, but of recognizing what you are becoming and want to be.  

[arbor]

Thank you, @mstimc  I truly appreciate your sending me these wise and encouraging words.  To have found your way to greater connection and compassion for others through the terrible experience of w/d is truly an accomplishment of great magnitude.  I take it as a beacon.  Thank you.

Arbor

[DataGuy]

How are you doing, @arbor? Were the holidays tolerable?

 

I think it is a good attitude to have, to reclaim what is salvageable. We definitely cannot get back lost years or even really benefit much from grieving the fact that they were wasted or blighted, so I am trying to do the same thing - reclaim my life - although I am also not too happy with the medical profession.

 

But when a doctor says "the risks outweigh the benefits", I actually love that, because then they are forced to defend that statement and usually you find out pretty quickly that they a) don't know the risks b) don't know the benefits or c) if they know both, they have completely failed to quantify them so that they can credibly say one exceeds the other. To me, it seems the only treatments fully investigated for risks vs benefits are the ones that actually work, like insulin for diabetes, antibiotics for infections (but even the adverse effects of ABs are not well studied) etc. Pretty shocking.

 

Hope you are sleeping / feeling a bit better, arbor. 

Edited January 3, 2021 by DataGuy

[arbor]

Dear @DataGuy  It's good to hear from you.  I also wonder how you're doing and whether you sleep any better yet.  I had a window of about 3 days after getting 3 nights of 7ish hours of sleep each night.  It was the first window in many months.  Now that I'm back to 4 to 5 hours a night, it's good to be writing (and thus reminding myself) that it happened.  Perhaps there is a small residual gain.  My attitude is more stoic than horrified.  I continue to dedicate my mind to dispassionate observation, receptive to whatever recognition of peace I can experience in the moment.  It's sort of a paint-by-numbers rendition of mindfulness practice.    I looked into the works of Stegenga and Prasad.  Both very interesting.  Turns out Prasad is a doctor at OHSU within walking distance of me.  My experience at OHSU has been so utterly negative that I was delighted to find his voice and wish he had more like-minded colleagues willing to speak up.  OHSU has made me aware of how dominated by Big Pharma many medical schools/research institutions are.  OHSU is working on new models of SSRI's right now.  My recovery story somewhat revolves around OHSU.  My health had been deteriorating so badly, I'd had to uproot my rural life and move back to Portland to seek (at OHSU) some help.  I saw many specialists and not one looked at the possibility that the SSRI I was taking was behind any of the problems.  When I eventually read Glenmullen's, Prozac Backlash, I noticed that one of the key people he cites as responsible for suppressing early studies on problems to do with SSRI long term use in mice, was still listed as affiliated with the Psychiatric Dept. at OHSU.  My god, I'd stepped into the lion's mouth.  There were a couple of incidents in which I had interactions with this Dept.-- both times with enough information to confront the issues.  I won't tax you further with how those went, and also I'm still recovering from the effort and traumatizing effects of speaking directly to an uninterested, patronizing audience.  I was deep in initial withdrawal during those months--to recount those appointments is still agitating.  (I will say, though, that I don't regret that the attending doctors (and their trailing students) ended up a target of my w/d RAGE....)

 

All my best to you, @DataGuy.  Please take care!  Arbor

 

 

[DataGuy]

Great to hear about your window, @arbor. I myself have really been having trouble with sleep and my stomach. I'm working on solutions right now, including reimplementing a fasting regime, but I have really had difficulty both instituting it and maintaining, despite the fact I have found it to help me every time I have tried. I tend to have odd reactions to certain foods, but will also have SX from not eating enough, especially before bed (as @ChessieCat mentioned is possible). So while I implement an intermittent fasting regime and it tends to work well, I will often make some mistake and get knocked out of it, or I will simply give in to the desire to eat to try and aid with short term symptoms. The last time I did this was quite awhile ago and I coincidentally had a really good period where I slept 5-6 hours every night for a couple weeks. Because I thought that the frequent eating had helped produce that period, I simply continued to eat like this. But fast forward a few months and I am doing much worse than I was during and before that good period of sleep. I am hoping it is the excessive eating and am trying to get back into fasting, but it's been difficult with work, where I often need to eat to be functional. I guess it is tough to explain. You would think it would be easy to fast (you just don't eat!), but it certainly hasn't been for me, even though I feel better when I am able to do it. I know this does not make a lot of sense when I explain it this way, but if I had to sum it up, I guess I feel I am often forced to forfeit long term benefits of fasting for short term functionality. A trap I need to work myself out of.

 

Other than that I am doing about as well as you could expect : )

 

I wish Vinay was a GP and was somewhere close to me! Unfortunately, in addition to being an oncologist, I think he has also moved to San Francisco to take another position, so perhaps he was as dissatisfied with OHSU as you are. Always hard to know with these things. I have had the same problems with doctors. Lots of denials and misdiagnoses, and what I am fairly certain is outright lying. So I don't think they are undeserving of your w/d rage. I have had plenty of appointments where I am more inclined to call a lawyer than do anything about the doctor's bogus referrals. But all I can really do is try to survive and do my best to recover. And have a long memory 😉.

[arbor]

Thanks for sharing this @DataGuy.   I hadn't realized that Vinay had left Portland.  Meanwhile, as far as sleep and fasting go, I often take a quarter of a tsp of honey when I wake in the night which I believe helps me go back to sleep.  Another thing I might take on occasion in the middle of the night, is 1 TBS goji berry powder.  These are both sweet, but I don't think they stimulate bile so thus don't interrupt fasting or increase cortisol.  I believe they help me, or I'm choosing to believe, or who knows--It's just so hard in the middle of the night, lying awake, remembering to relax and be patient.  I’m really appreciative of SA and for the information gathered here.

 

Here’s to all of us putting fractured sleep and energy issues behind us—

 

[arbor]

Though I'm not holding my breath that it will continue--I did actually get 8 hours of sleep last night.  I've been trying to relax more around my symptoms (especially the strong emotions).  Perhaps that's helping--or maybe time just brought me a gift.

 

I so want for all of us to be well,

Arbor

[mstimc]

Any window is a gift and a sure sign you can recover. My first real window lasted less than an hour but from the on I knew I could recover.  Letting the emotions come without fighting them or judging yourself is empowering.  You’re doing great!

[arbor]

4 hours ago, mstimc said:

Any window is a gift and a sure sign you can recover. My first real window lasted less than an hour but from the on I knew I could recover.  Letting the emotions come without fighting them or judging yourself is empowering.  You’re doing great!

Thank you @mstimc!  Your words made my day.  I've printed them out and put them on my fridge--

May you be well!

Arbor

[mstimc]

8 hours ago, arbor said:

I've printed them out and put them on my fridge--

Thank you for this, Arbor.  It means at least as much to me as whatever help I've been able to give means to you!  

[Leila]

Good to hear, dear Arbor! Wish you more and more healing windows!🙂🙏

[arbor]

Thank you, Leila.  I've wondered how you are doing.  I send you wishes for recovery💗

[arbor]

I keep waiting to report further progress, but since that one good night of sleep, I've taken a drastic downturn.  One morning, after another night of no-to-little sleep, I looked at my legs and found a bunch of frightening looking bruises.  After some investigation online, I settled with the hypothesis that I'd developed "ecchymosis," possibly in association with high cortisol.  I also have other skin conditions listed as symptoms.  I won't go into the misery of my state of mind as you know it too well.  Last night's SI was particularly intense.  Yet, this morning has brought a vague, disembodied calm, nearly a window.  Fragile, floaty, most likely transient--but I'm not complaining!

 

During the sleepless night, I thought about the kind words here, and oh, one good thing that had happened in the day--a friend who's being pressed to take an AD, decided not to after hearing about the data and patient experiences the doctors don't share.

 

Thank you for being there--

Arbor

[mstimc]

2 minutes ago, arbor said:

Yet, this morning has brought a vague, disembodied calm, nearly a window.  Fragile, floaty, most likely transient--but I'm not complaining!

Hi Arbor

I've often heard of (and experienced myself) something called "the dark night of the soul".  Its a transition from constant anxiety and endless symptoms to recovery.  Basically, it occurs when your nervous system has had enough and kind of shuts down; that's why it feels like a disembodied calm.  It can be the beginning of real recovery, especially if you see it as you do--a window, albeit small, on your path to full recovery. 

 

FYI, when I was in high states if anxiety, I thrashed around quite a bit in my sleep.  My wife said I'd often start swinging my arms and legs like I was fighting (thank heavens I never hurt her) Maybe your bruising is from this type of "active dreaming" and you're bumping yourself without realizing it. 

[arbor]

Dear @mstimc--These words are so helpful.  Thank you more than I can say.  And yes, these glaring, interrogative nights do feel like dark nights of the soul--and I usually can't fall into the limited sleeps I do get until I reach some place of acceptance--even surrender.

Gratefully-gratefully yours,

And all my best wishes to your happiness and well being,

Arbor 

[DataGuy]

Sorry to hear about the SI, @arbor. Withdrawal is very up and down. I think you are doing great. You have been off the ADs for a couple years now and off Gabapentin for a little over one year. You've reversed your diabetes diagnosis and are well on your way to healing. It is annoying when other health conditions pop up, but hopefully you are able to work around them. Many will simply improve when you get better. Have you had the bruises checked out by a doctor? I am guessing they are not the result of any sort of blunt force trauma? It may be useful to see someone just to put your mind at ease.

 

You have been through quite a lot, medically and of course, stress-wise, so I think the fact you have done as well as you have is amazing. The pandemic has been hard on everyone, so I hope once that is over we will see some improvement in members who are doing worse. Even people with no previous health conditions are having trouble coping with the onslaught of negative news from the media. Sometimes best to just ignore that.

 

Best hope and healing to you @arbor. Always great to hear your updates. 

[Leila]

Dear Arbor, I know how could be orrible some nights... But the following window is an important signal of healing... We had to cling to these moments of new connection of the world! They will save us💗

[arbor]

Thank you so much @DataGuy.  I read your message when I got up this morning.  Since then my heart has felt physically warmed, and the day brighter.  I'll check with the blood specialist I was referred to before the Pandemic closed his office.  Interestingly, I read his name in an article endorsing the work of his (then) colleague, Vinay Prasad.  Hopefully he'll be open to including the effects of w/d in his assessment.  Of further note to do with OHSU, I include this upcoming lecture, free to the public, that may be of interest.  A friend sent it, knowing that I had developed diabetes (1 and 2) while taking AD's.

I hope you are doing ok with the strain on your sleep.  I'm curious to hear if the fasting is easier for you.

Thank you also for your knowledge and research--on top of experience.  This is such a strange, strange situation we're all in...

🙏Arbor

 

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[arbor]

Thank you, @Leila  It really helps--knowing that you know what it's like.  My heart feels tied to you💗 

I hope you are doing ok,

Arbor

[arbor]

I want to report that some of my neuropathy and rhabdomyolysis has been slowly improving.  I thought, if it can be useful to anyone else, I'd share my investigations.  I felt very desperate and hadn't yet found SA in the beginning.  I now realize that because our systems are so fragile, that most supplements should be avoided.  However, I ended up on a routine of taking magnesium, taurine and apple cider vinegar before bed.  There's no way to determine whether they've been helpful, but I don't think they've harmed me, and maybe have helped.

   

Perhaps walking everyday has been the most useful.  

 

In the beginning I used a topical capsaicin gel.  It did help (or I imagined it did) with the burning.  I no longer have much burning, just numbness which in one foot is improving.

 

As for the muscle wasting, I've gotten back to almost normal, with my right leg more numb than the left.  

 

I send wishes for recovery and health to everyone!

Arbor

 

Here are some studies that I had come across that influenced my guesswork.

 

 

Complex Withdrawal Model | RxISK

rxisk.org › Home › Complex Withdrawal Model

 

 

 

Sertraline-Induced Rhabdomyolysis: A Case Report and ...

pubmed.ncbi.nlm.nih.gov › ...

 

by M Snyder · ‎2016 · ‎Cited by 20 · ‎Related articles

The patient's rhabdomyolysis was attributed to sertraline in conjunction with recent exercise. Selective serotonin reuptake inhibitor (SSRI)-induced rhabdomyolysis ...

 

 

 

Taurine and its analogs in neurological disorders: Focus on ...

www.ncbi.nlm.nih.gov › pmc › articles › PMC6536745

 

by M Jakaria · ‎2019 · ‎Cited by 47 · ‎Related articles

May 21, 2019 — It reduced oxidative stress-induced neuropathy in a diabetic mouse model by ... of taurine reduced the levels of dopamine, 5-hydroxytryptamine, and ... STZ-induced oxidative stress and nerve growth factor deficit in rats [117].

‎Molecular basis of taurine... · ‎Therapeutic potential of... · ‎Neuropharmacological...

 

 

taurine and caffeine apparently shouldn't be taken together

 

 

 

 

[DataGuy]

Excellent to hear, @arbor, you are very blessed with a talent for healing. Hope you are feeling better during the day. How have the insomnia and depressive symptoms been? 

 

Yes, I think people injured by psychotropics should probably avoid caffeine altogether. In combination with sedative/anesthetics, it appears to augment the neurotoxicity of these drugs (in addition to being neurotoxic itself). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5871879/

"Caffeine Augments Anesthesia Neurotoxicity in the Fetal Macaque Brain"

 

"Isoflurane exposure increased apoptosis 3.3 fold for neurons and 3.4 fold for oligodendrocytes compared to control brains. Isoflurane + caffeine caused neuronal apoptosis to increase 8.0 fold compared to control levels but did not augment oligoapoptosis. Neuronal death was particularly pronounced in the basal ganglia and cerebellum. Higher blood levels of caffeine within the range considered therapeutic and safe for human infants correlated with increased neuroapoptosis. Caffeine markedly augments neurotoxicity of isoflurane in the fetal macaque brain and challenges the assumption that caffeine is safe for premature infants."

 

They mention in the article that the FDA had recently recommended against longer surgeries for infants because they had been associated with an increased risk of developmental disorders. Seems most sedative anesthetic drugs (SAD) are neurotoxic to some degree.  Both sedatives and stimulants seem to elevate the rate of neuroapotosis (programmed cell death of neurons). This area of research is still in its infancy, but there is some literature on alcohol and other depressants like ketamine, anti-epileptic drugs, benzos etc. being neurotoxic (mostly in animals) going back at least a couple decades (see here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3938204/). Catherine Creeley has done quite a bit of work on the adverse effects of psychotropics. 

 

Unfortunately, I missed that lecture you posted. Hopefully they will put it up on youtube or something. Were you able to watch?

 

My sleep has been a bit better lately. I have really been trying to get my cardio in, running up the stairs in my building (20 floors). I haven't been quite as consistent as I want to be with my fasts, but I have had a few good ones. One that I started around noon seemed to really help me sleep better that night, but usually I fast from something like 4pm to 10am. I can't wait until the snow melts here and I can go out on my bike : )

[arbor]

Hi @DataGuy--Thanks so much for this message.  These studies are really interesting (and disturbing, as well).  I looked up Catherine Creeley.  It's so important that work be done like this, especially for children.  I hope your sleep is continuing to improve, and that's terrific that you can run up 20 flights,  wow!  My A1C is now 4.9.  Perhaps my modest intermittent fast (6PM-10AM) is bringing it down--though as with so much, I don't know.  I ended up not seeing my blood doctor (I've been diagnosed with MGUS), and instead, the diabetes doctor who can be very disdainful, and disinterested in knowing anything about the effects of antidepressants or their discontinuation.  The one good thing I can say is that hard as my interactions with doctors have been on my nerves, that this go round, I could at least create some intellectual distance.  I slept 2 hours last night, but I was able to stay somewhat more peaceful and not ruminate about how scared and confused the akathisia makes me.  I couldn't attend the lecture.  Hopefully, the studies will get a larger audience.  I doubt that my doctors were interested.

 

Yes, I bet the bike will help with everything, and soon you'll be flying--

Very grateful to you,

Arbor

[arbor]

This is just an update to say, that a few days ago it almost seemed as if I was feeling--hopeful.  I thought maybe I'm entering what others refer to as a--window.  How amazing.  (But that seemed too excitable--so I'm still just rolling with it, a small feeling of feeling the tiniest bit better.)  What we're having to endure is indescribable!  It's as if language was invented before these chemicals.  That's why words like "neuro-emotions" have been so helpful to me.  

 

I appreciate knowing that you are all there, and you can understand how more-than-hard this recovery is.  Thinking of you, Arbor 🎈🎈☀️

[mstimc]

Hang in there, Arbor.  The windows will get clearer and last longer, especially if you continue to be willing to roll with the feelings.  The physical symptoms lose a lot of power if you don't give them the mental and emotional power they want. 

[arbor]

3 minutes ago, mstimc said:

The physical symptoms lose a lot of power if you don't give them the mental and emotional power they want. 

 

Thank you so much, @mstimc--It takes such a lot to not give into panicking about feeling panics!!!  I feel I can hardly be reminded enough--Thank you for being there.  (I hope you have a wonderful weekend.)  Arbor

[mstimc]

2 minutes ago, arbor said:

It takes such a lot to not give into panicking about feeling panics!!

 

Truer words were never written!  I think that's the essence of anxiety--being afraid of fear itself.  Its such a powerful emotion we want to find a reason for the feeling, and when we can't it just makes it worse.  So, sometimes we latch onto a any reason we can find, no matter how unreasonable the connection between the fear and the "cause" may be.  Its a tough thing to accept but you can do it!

[DataGuy]

Hi @arbor,

 

I fear I have been neglecting you these last few weeks. I hope you are doing well. I saw in one of your recent posts you are now working? I don't know if that was the case before. That is a great sign! I hope it doesn't cause you too much stress. 

 

I have managed to get a few fasts in and it always seems to help me. I just have to stick with it, which can be difficult with work, symptoms etc. Still very up and down with waves and windows, but the waves are much easier to handle. I hope you are sleeping better and feeling ok. I was very happy to hear about your a1c readings. I think the reversal of your diabetes should be written up for a journal! I'm sure many have been diagnosed as a result of ADs and had no idea they could reverse it. Would be very useful. 

 

Hope you are being kind to yourself, @arbor

[Erell]

On 2/26/2021 at 9:31 PM, arbor said:

 

Thank you so much, @mstimc--It takes such a lot to not give into panicking about feeling panics!!!  I feel I can hardly be reminded enough--Thank you for being there.  (I hope you have a wonderful weekend.)  Arbor

So true ! It is almost an everyday work, not give into panicking about feeling panics. 

This sentence resonate so much, especially when the adrenaline feels so physical.

 

I don't know if it might help, in my case I find that different things help at different time :

- distraction, distraction and more distration 😉

- sometimes I just surrender, I don't know how to explain it in English. Perhaps this is what people call acceptance. 

it's like "ok, I'll give my entire self to anxiety. Now that you're here anxiety, do what you have to do, I won't fight".

- Walks in nature. This is the best tips I have to "ground".

 

It sounds like You're doing a great job at coping symptoms, I send you huge hugs and support ☀️

[arbor]

Hi @DataGuy  It's so good to hear from you.  I appreciate the breadth of knowledge you bring to this giant subject of medication w/d.  I've also wondered how your sleep is going.  It continues to be a big challenge for me.  I find it especially distressing when I know i have a busy work day ahead.  Still, I'm grateful to the work.  It's rewarding, focusing, and it takes me away from w/d distress.  Today I see the hematology doctor about the MGUS.  I'm hoping he's aware that the stimulus of this genetic condition has also been linked to the use of psychotropic medications.  I'll give you a report after I see him.  Just over a year ago, a blood test I had showed a high reading for the immune marker, IGM.

Meanwhile--I send wishes for health and fortitude and lots of true, delicious sleep to you.

Arbor

[arbor]

On 3/29/2021 at 2:09 AM, Erell said:

I send you huge hugs and support ☀️

 

Hello, @Erell  Thank you for your support.  Can you believe how enormously difficult our experiences of w/d are?!  It means the world to me to know that we can share the distress as we endure, unsure about what is happening, hoping we will get better, that we won't have this forever, trying not to listen to the symptoms that grip our minds, taking us into terrible darkness.  This journey is so slow, but I believe completely that your mind and body will heal.  Please write anytime.  I appreciate hearing your experience.

I picture you planting in the garden as the days get longer--

Hugs, Arbor