Elaine5: Introduction

[Elaine5]

Okay, I will continue to seek out a compounding pharmacy then! 
 

Thanks Getofflex. That helps put things in perspective. As always, I appreciate your time, insight, and goodness. I hope you are well and having better weather you are. 

[Elaine5]

Just adding this here, as I’ve slowly moved up the Belsomra from around 1:00am now to around 12:30am over the last few days (I went slower than an hour) I am feeling more depersonalized…. To be honest, I’m not even sure what I’m feeling is which symptom so maybe it’s better I just describe: 

 

I am NOT feeling the intense restlessness, agitation, burning, inability to sit down, lack of appetite 

 

I AM feeling like my brain is asleep while I am awake, can’t think straight, disconnected, not in the moment, slow, drowsy but not sleepy, head pressure/headache/tinnitus… and this all has seemed to get steadily constant throughout the day the last few days, whereas in the past it would wax and wane in a day or be mostly gone. 
 

Today I got up around 1:30pm, felt okayish, and then as the afternoon progressed, felt more and more loopy, disconnected, brain asleep, head pressure,  and not good. 

 

Maybe the Belsomra has built up in my system and there is slightly more of it when taking it earlier…. I will probably take it at 12:30am tonight and not move it up for a few more days after that…or should I just make a bigger jump in time and get it over with, like from 12:30 to 12am along with the 12am propanolol dose 

[Elaine5]

Okay so I am noticing an inner popping/vibrating that has greatly subsided, popped up again full force this morning. I guess it had sort of been low key in the background, mainly in my right calf, the last few days, but today it is pronounced and widespread. 
 

i feel tension in my chest/adrenaline, was not able to sleep more than an hour or two, feel anxious, headache- different than the depersonalization. 
 

could this be from moving the Belsomra dose up a half hour over the last week? Should I hold there or move it back? 
 

the only thing I did differently I guess was eat some bread which I sort of avoid but not religiously, and had some coconut milk that was fortified with some vitamin d, vitamin a, and calcium? Maybe that was it. 
 

im really at the limit of discomfort so i hope these issues don’t progress further. 

[getofflex]

5 hours ago, ElaineBenes5 said:

could this be from moving the Belsomra dose up a half hour over the last week? Should I hold there or move it back?

It could be, or it could just be coincidence.  Symptoms tend to come and go, change and morph over time.  I wouldn't move the dose back again, I would leave it where it is for now, and just keep to this dosing schedule for a while. 

 

5 hours ago, ElaineBenes5 said:

the only thing I did differently I guess was eat some bread which I sort of avoid but not religiously, and had some coconut milk that was fortified with some vitamin d, vitamin a, and calcium? Maybe that was it. 

I doubt this was the cause, but it's not impossible.  

 

I'm suspecting you've been hit with a wave.  We don't suggest making drug or dose changes because of a wave.  It's better to practice non drug coping techniques.  I'm assuming you are staying completely away from alcohol, THC, CBD, etc.  It could be changes in the weather, change in your routine, overstimulation, a new stress factor, changes in your relationships, etc.  Our systems tend to be fragile and easily upset during WD.  

[Elaine5]

Okay- sticking with 12:30am dosing going forward. 
 

All right, going to remain calm through the wave. 
 

Yes, I don’t drink any alcohol and have never touched THC or a single drug in my life- except for pharmaceutical poisons clearly. I don’t even use any of my luxurious skincare products anymore out of caution of their ingredients. 
 

On 1/8 I wrote in my notes “felt totally normal, GREAT day, 90% everything.” Holding onto that sentiment even though in this wave I’ve forgotten all physical memory of what anything good feels like. 
 

Non-alcohol Cheers to you and thanks for helping, always.

[Elaine5]

@PoetJester I disabled my messages here as I’m trying to spend less time on here marinating in my own worry about this. The whole experience is just absolutely overwhelming me now. I’m on a “very fixed income” of sanity.  Please take care

[Altostrata]

On 1/15/2023 at 5:01 PM, ElaineBenes5 said:

The doctor would need to call this prescription in to the compounding pharmacy?

 

This is correct, but it would have to be a compounding pharmacy. An ordinary pharmacy won't do make a custom prescription for you.

[Elaine5]

Slept like a baby two nights ago. Yesterday had a beautiful day, almost normal. Was upbeat and happy. Played my guitar, danced around to Shakira, laughed, got dressed up, etc.
 

About to fall asleep but had to have a conversation with my family, which somehow in 3 minutes managed to completely awaken me and snap me out of sleep. I was right on the brink of it too! 
 

Was up, but at least in a good mood, and watched a movie with Jason Momoa. Apparently, attraction and something in the way of desire are coming back online randomly and sporadically lately, because watching this movie with Jason Momoa was too activating, lol. While great news in one regard, the good activation soon turned into just a yucky feeling of norepinephrine/adrenaline and restless legs that’s waxed and waned all morning. So Jason Momoa, yes, but at what cost. 

 

 

[Altostrata]

I like Jason Momoa.

[Elaine5]

Posting this here for when I need to be reminded that people who were in withdrawl and then tried out other meds with bad effects heal as well. 

[Elaine5]

This one too: 

 

[Elaine5]

I am going to move up the Belsomra earlier again. If I am going back to work I can’t be sleeping past 8am. curently taking it around 12:35am the past week. I will move it to 12am tonight, then 11pm tomorrow, and 10:30pm the next day. Please let me know if you feel this is not reasonable. 

Misc. Update: continue to feel depersonalized throughout parts of the day. Sometimes intrusive thoughts with this depersonalized feeling. Feeling of consciousness being blocked off from me, but physically present, just mentally not here. Cut off from my self somehow. Head/ear pressure along with this. Also sometimes feeling okay and good. Intermittent internal tremor/bubbling in left leg, mainly calf. Rarely restlessness or agitation compared to before. No burning feeling. 

 

I kind of suspect Belsomra does not agree with my system or dose remains to high, as been pointed out previously by Alto here in earlier notes. I plan on continuing to taper that slowly in future. 

 

Continue following relatively low histamine diet (no canned anything, no fermented anything, no desserts, mainly vegetables meat and fruit, sometimes bread, rarely cheese) 

 

Psychiatrist feels the depersonalization is from being traumatized by Akathisia and still being anxious. He is okay and understanding. I suspect it is still an adverse reaction to belsomra and lingering element of nervous system upset. 
 

plan on maintaining at 15mg Belsomra another month and then cutting down to 13.5mg after that via compounding pharmacy. 
 

 

[getofflex]

20 minutes ago, ElaineBenes5 said:

I am going to move up the Belsomra earlier again. If I am going back to work I can’t be sleeping past 8am. curently taking it around 12:35am the past week. I will move it to 12am tonight, then 11pm tomorrow, and 10:30pm the next day. Please let me know if you feel this is not reasonable. 

That sounds pretty reasonable to me.  

 

It sounds like you are doing better than you were in October and November of last year.  Am I correct? 

 

Is the low histamine diet helping? 

 

24 minutes ago, ElaineBenes5 said:

plan on maintaining at 15mg Belsomra another month and then cutting down to 13.5mg after that via compounding pharmacy. 

This sounds like a good solid plan.  Keep up the good work!  👍

 

[Elaine5]

Thank you, Getofflex. 
 

2 hours ago, getofflex said:

you are doing better than you were in October and November of last year.  Am I correct? 

I still feel pretty precarious, but I am glad you are seeing a difference from the outside! Good days/moments are better and give me hope. I’m still too much in it to tell myself. I know I’m very thankful for you and Alto and ManyMoreTodays for offering insight when things were dire. I owe you big time when I’m doing better, Getofflex. You have been a steady voice of reason and support when I was really really in pain. Thank you. 

I think Low histamine diet is helping somewhat. Low histamine diets are also coincidentally lower in glutamate, and generally just more healthful so im not sure the fact that it’s low histamine is what is helping but there is something there. Although, you tell a girl from NJ she can’t eat dried sausage or eggplant parm…. Fugghedaboutit. 

That is the plan and I’m sticking to it. You rock. And who would have thought Alto and I would bond over Jason Momoa? 😂 Thank you ladies.

 

[getofflex]

13 hours ago, ElaineBenes5 said:

Although, you tell a girl from NJ she can’t eat dried sausage or eggplant parm…. Fugghedaboutit. 

LOL, you made my chuckle.  😁   

 

13 hours ago, ElaineBenes5 said:

I know I’m very thankful for you and Alto and ManyMoreTodays for offering insight when things were dire. I owe you big time when I’m doing better, Getofflex. You have been a steady voice of reason and support when I was really really in pain. Thank you. 

You are very welcome.  I'm glad I was able to be of help.  I don't know where I would be without this site and it's tapering wisdom, so I'm paying it forward.  

[Elaine5]

Well I took the Belsomra at 11:45pm last night and then the Propanolol at 12am. 
 

I did not sleep a wink and experienced restlessness, muscle spasms, current in legs feeling, overall very uncomfortable. 
 

This is so confusing and frustrating. I had one of the best days yesterday and then this- which makes me think the time change is responsible. 
 

Now I wonder if taking the Belsomra before propanolol isn’t good, if just changing the time is messing up my CNS, or if it was just a coincidence. But as the reason I’m moving the time up is to get to sleep earlier, seeing as how I didn’t sleep at all is problematic. 
 

I wish I could just keep with what was sort of working and just keep going with that but I feel compelled to listen to my family as I always have to appease them and go back to work even though my body is not ready. 

[Altostrata]

Belsomra and propanolol are both "brakes". When you take 2 or more brakes together, they can press down too hard on your CNS. Then your CNS fights harder to stay away. This is called a paradoxical reaction to the brakes.

[Elaine5]

That makes sense. Maybe a half hour apart will be better. 
 

is this just too far gone for me at this point?

 

Like the issues I had initially with anhedonia and anesthesia and then the med changes and akathisa reaction in November after the gelatin supplement and insomnia… 

 

I want to have hope I’ll live a happy life again. Just looking at my own signature here frightens me. So many variables. 

 

I would have been okay in time if I just waited out the pssd and blunting, but there is so much scary stuff out there about how it’s separate from withdrawl and permanent. It absolutely scared me to death and I was so so desperate I didn’t think gelatin would be that bad. Then it opened up the door to other meds and here I am. 
 

I’m sorry. Today was a very hard day. Does having Reinjured the CNS mean there is less hope? I feel like Ozymandias, buried in the sand, a once great king of a once great civilization. I look at my clothes and my jewelry like artifacts from another time. Pictures of myself from months ago, so proud and promising. And now… 
 

Do people in similar situations make it through? I feel so hopeless. 

[Altostrata]

We've talked many times about how it seem the Belsomra is too strong for you. Peer support can't help you with this other than to suggest reducing the dosage and not taking propanolol with Belsomra.

[Elaine5]

Okay you’re right. So instead of thinking this is doomed and a part of protracted withdrawl, just focus on lowering the Belsomra (slowly and in time) and things will likely get better then. I won’t post again until it’s time to do that. 

[getofflex]

11 hours ago, ElaineBenes5 said:

Do people in similar situations make it through? I feel so hopeless. 

I think you are going to recover, and make it out of this.  There are people who have been polydrugged, and eventually they do recover.  Have you read any of the success stories?  Go to the home page, and read some.    

 

Here are some success stories: 

 

Pug Success Story

 

Shep's Success Story

 

Manymoretodays Success Story

 

Also, bear this in mind:    It's from Steps for Managing WD Symptoms

 

 

On 2/7/2022 at 3:06 PM, Scrountz said:

1. Say to yourself: "I am experiencing a symptom."

Its important when symptoms arise to name them what they are. When in a wave it is easy to lose perspective and believe that what we are experiencing is a sign that we are going crazy, mentally ill, that our brains are broken, or that we are dying. Symptoms are not characterological defects, nor are they signs of a deeper problem. Symptoms are time limited experiences that will gradually resolve. When you name what you are experience as a symptom, you are reinforcing what is real.

 

2. Remind yourself: "I would not be feeling this way if it was not for the medication."

Withdrawal/ADR symptoms are compelling and have a tendency to pull us in to a unique physiological reality characterized by interminable suffering. Neuro-emotions, ruminating thoughts, and unrelenting physical ailments feel so real it is sometimes hard to believe that we are experiencing is drug induced. Falling into this pit can send us into a spiral of googling symptoms, experimenting with remedies and endlessly theorizing about our condition. Reminding ourselves that it is the medication (or for withdrawal, its absence) that is causing this experience grounds us in the appropriate context for recovery. When we remind ourselves it is the medication, we open the door to taking the right action to promote recovery. 

 

 

Edited January 29, 2023 by getofflex

[Rosetta]

Dear Elaine,

 

You are not doomed.  You will make it through.  That feeling of being doomed is actually one of the symptoms of WD.  It’s also a pretty natural thought to have when struggling through something like WD for weeks or months, but separately, it’s considered a symptom by many, many people on SA.  

 

Normally, when we have a physical injury, the progression of healing is more or less linear -  we get better and better with very few setback or regressions.  Anything that affects our brains, whether a physical injury or something that directly knocks off the balance of chemical composition, as ADs do*, results in a much different experience of the healing process.  
 

Here’s a sort of analogy or maybe even an explanation: As the brain and nervous system try to reach a good balance, there are numerous points at which they overcorrect in one direction or the other, and we feel various emotions (as well as physical symptoms) as a result of these overcorrections.  One thing we feel is a sense of being doomed or impending doom or a feeling that what we are experiencing in that moment is permanent.  Most of us here, I would venture to say, think this feeling is a symptom of WD just as sadness is a symptom — or anxiety or simple fear, etc.  It can be a very strong feeling, and we are used to letting our feelings frame our perception of reality.  We are supposed to do this as a part of our fight or flight or freeze reaction.  Our nervous systems are not designed to cope very well with these extreme feelings of existential dread, and having these feelings with no discernible outside stimuli to identify as the cause can create a great deal of confusion.  
 

Additionally, the fight/flight/freeze reaction is not supposed to last long enough for us to have time to think about the cause for very long.  When the coyote is hunting too closely by, and the rabbit can smell him, the rabbit will freeze or run, and, in short order, will either escape or be eaten.  Once one escapes, it’s nervous system will calm down and return to normal quite quickly.  For those of us in WD, we not only have a nervous system on high alert telling us there is danger all around, but it stays on high alert.  So, our higher brain function causes us to try to make sense of this consistent, unrelenting signal from our bodies that we are in danger.  This results in a lot of thinking, calculating, searching for a cause, trying to figure out who is intending harm us, who do we need get run away from, where do we need to go to be safe.
 

We might feel doom.  I did many, many, many times.  It’s logical, right?  The feeling does not cease.  In fact, it may begin and then grow, getting stronger over hours or days.   I’m not sure why we are designed such that we consider the possibility that we will never get better or why we make the decision that that is the truth — maybe to encourage us to remove ourselves from the area in which we live?  However, it is very common among people suffering from WD, and moving will make no difference.  So, we have to, time and again, remember that something is wrong with our brains, reality is far different from perception, and — this is important — stop looking through our environment for an outside cause (except the fact that we reduced an AD too fast some weeks back). This is surprisingly hard to do!!  Somehow, we have to accept that we are going to feel afraid, feel doom, and persevere anyway until the brain has corrected this mess.

 

I hope this helps you a bit.  Overcoming the signal from your body that you are in trouble is difficult, and you will have to do it over and over again, but many of us here have succeeded.

 

Good luck, Rosetta

 

(*Even if the balance wasn’t ideal to begin with, I believe ADs can change the balance in less than helpful ways (to put it mildly).

[Altostrata]

Belsomra might also be causing demotivation or "depression", as the sleep drugs often do. It is your responsibility as a drug consumer to read up on the adverse effects of each of your drugs, so you can recognize them yourself.

[Elaine5]

Do you see a way I can cautiously  address the time/spacing issue while I wait to taper?  
 

since moving Belsomra up to 11:30pm I have felt consistently worse overall. is this coincidence a wave or a result of that? Idk. 
 

but the last few nights have seen increase in no sleep, pronounced restlessness (kicking, shaking, rocking legs in bed), high anxiety where it feels like something is squeezing on my heart and my chest feels very uncomfortable, adrenaline feelings, and this translates to agitation and panic throughout the next day. This is precipitated by what I notice as feelings of sleepiness immediately after taking Belsomra (11:30pm) and Propanolol (12am). That either knocks me out or completely activated me to an intolerable degree. 
 

I know we have discussed Belsomra and I am waiting to taper that until more stable. It’s still not time to do that yet? If not, can you see a way I can better space these meds out. I remember feeling better I think when I was taking propanolol at 12am and Belsomra around 1:30am. That was the two weeks I felt “almost normal” and had many great days. 
 

i don’t know if making slight changes to timing caused more problems or the actual timing is the problem or I need to get off Belsomra more quickly or if recent stress has caused these issues entirely. No one can know. But regarding timing, as both are brakes, how can I better approach that issue? 
 

tha ks 
 

 

[getofflex]

1 hour ago, ElaineBenes5 said:

i don’t know if making slight changes to timing caused more problems or the actual timing is the problem or I need to get off Belsomra more quickly or if recent stress has caused these issues entirely.

I would tend to suspect that recent stress has caused this current wave.  I personally get upticks in symptoms when I experience more stress, as so most people in WD.  

 

I can't tell from your signature when you last decreased or changed your dose of Belsomra.  Can you please clarify and update your signature, and give us the precise dates, as best you can remember, for your changes in your dose of Belsomra?  Thank you.  It just says "current - belsomra 20 to 15", so I don't know what date this actually was.  

[Elaine5]

it was a giant amount of stress about going back to work and ultimately I resigned. 
 

15mg Belsomra since 12/22

 

taken at 1:30am until 1/9 

 

then 12:30 am until 1/26 at around 11:30pmsince 

[Altostrata]

 

@ElaineBenes5 Moving Belsomra earlier by an hour each day should not cause dramatic symptoms. You've been taking 15mg for more than a month without apparent problems.

 

Something else must have happened to cause you a bad night. Emotional upset or anxiety caused by life events is not a wave of withdrawal symptoms. Are you working with a psychotherapist?

[getofflex]

20 hours ago, ElaineBenes5 said:

12/22

is the 22 the year, or the day?  

 

I would tend to suspect that the major stress from going back to your job for a few days, then resigning, is probably what is going on.  If it were me, I would continue to hold, until the stress and the symptoms subside.

 

 

[Elaine5]

On 2/4/2023 at 9:35 AM, getofflex said:

is the 22 the year, or the day?  

 

I would tend to suspect that the major stress from going back to your job for a few days, then resigning, is probably what is going on.  If it were me, I would continue to hold, until the stress and the symptoms subside.

 

 

12/22/2022 I mean. Yes, stress for sure ramped up overall anxiety and agitation and since the adverse reactions in fall that doesn’t feel like my own anxiety.  

 

On 1/27/2023 at 3:39 PM, Altostrata said:

Belsomra and propanolol are both "brakes". When you take 2 or more brakes together, they can press down too hard on your CNS. Then your CNS fights harder to stay away. This is called a paradoxical reaction to the brakes.

This is what I was worrying about having moved the Belsomra earlier. Like it would be causing more pronounced or regular paradoxical reactions because of this timing alongside propanolol or rate of metabolism. 

I guess I could move Belsomra further away from propanolol time but don’t know if making timing changes again would be risky. Ultimately, I must decrease Belsomra again at some point. It’s starting to feel like this particular issue is due to Belsomra and not overall protracted withdrawl or the earlier adverse reactions. 
 

Every couple of nights since first starting Belsomra I will feel a great deal of panic, confusion, heat, discomfort, restlessness (fidgeting legs) about two hours after taking Belsomra. It will either wake me up or prevent me from sleeping. It’s different than just feeling anxious or irritated about something in life. I could be feeling not terrible, calm, and this happens out of nowhere and is not natural. Usually after this happens, I will feel more depersonalization, anxiety, or “off” during the following day. 

If it happens frequently after Belsomra, it’s likely Belsomra. Unless, adverse reactions have to happen every time? 

I might be feeling as good as I’m going to do on this dose of Belsomra. So I’m stuck between hold longer or drop again. I’m using coping methods in the meantime.

[Altostrata]

6 hours ago, ElaineBenes5 said:

If it happens frequently after Belsomra, it’s likely Belsomra. Unless, adverse reactions have to happen every time? 

 

We have been talking about this for 5 pages. It appears you are having an adverse reaction to Belsomra. Please re-read this topic from the beginning.

 

@ElaineBenes5 you don't have to reduce Belsomra if you don't want to, but the staff cannot continue to discuss your adverse drug reaction with you.

[Elaine5]

Okay, got it, that is super clear now. I didn’t know if it was a wave or I was supposed to be holding to be more stable. 
 

I will make another cut and update in the future. 

[getofflex]

The formula is current dose x 0.9 = new dose.  15 x .9 = 13.5 mg. of Belsomra.  Let us know how it goes.  

[Elaine5]

If a mod here would be able to share insight into the tapering process re: drug degradation, that would be helpful. If not, that is okay. 
 

The compounding pharmacist explained that Belsomra is packaged specially to protect from moisture (blister pack). Thus, he can only make 7 days worth at a time, which is not an issue. However, I am concerned that on days 3-7, for example, the Belsomra in the compounded capsules may be degraded in some way and cause problems. I asked the pharmacist if it was safe and was told “it should be fine.” This does not inspire complete confidence. 
 

Are there other meds more commonly used which come in blister packs or have this concern about degradation that I may read through the tapering topic for? 
 

Otherwise, I could crush it, weigh it, subtract 10%, and put it in a gel capsule each night. I just feel really weird doing that. 

[Altostrata]

The compounded Belsomra isn't going to get wet within the capsules. It should be fine, as the pharmacist said. 

[Annaaa]

@ElaineBenes5 How are you doing now with your symptoms have you seen any small improvements? i have very similar symptoms that you are experiencing. It’s very overwhelming.

[Elaine5]

@Annaaa hi, good luck to you. Sometimes things are okayish, I have seen some good days. Things are variable.