PatriciaVP

PatriciaVP: #TweetingMyRecovery 140 Characters is all I got

321 posts in this topic

Thanks, Cheesy Cat. I know I can always find an understanding "ear" hear.

 

I've been thinking a lot about permanence lately. Particularly the permanence of the damage these drugs have caused and the symptoms of that damage. Personally, nothing feels permanent right now. Everything is changing so quickly. Improvements and difficult symptoms come at me with such frequency and often ferocity, that it's difficult to think of any of it as "permanent".

 

I've also developed a kind of philosophy for when I am lamenting my current situation, and thinking it will never change. The truth is I don't know what, if any of this is permanent, and I won't until I am dead. Then it won't matter anymore anyway. Since I don't know things wont get better, I may as well assume they will. Since I don't know when, I may as well assume it will be sooner rather than later. The trick is to face each day with the hope that today will be the day I will be better, but also being able to peacefully accept the fact that it might not be. Some days that's trickier than others.

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Patricia -- your thinking about symptoms is exceptionally practical and realistic, even if a little dark.  It's odd that in the face of uncertainty we opt for the negative possible outcomes. :blink:

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I guess it is a little dark, but it helps me with patience and acceptance. It relieves the exhausting striving.

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Had a pretty good weekend. Actually stayed awake all day on Sat while spending the day at home. I don't remember last time that happen. Then Sunday I went out AND got a few things done around the house. That was something.

 

Feels like I'm paying for it today, however. So tired and dizzy. When I feel better like that I start planning all the things I can finally get done. Just such a letdown to come to a dead stop the following day.

 

Have to see my pdoc tomorrow. I think he thinks I dropped to 5 mg on the Lexapro. He still doesn't get what I'm doing. Thinks this slow taper is unnecessary. Refuses to look at anything I give him. All I need to do is get him to give me another script for the liquid Lexapro which I know he will do. Just hate having to go round and round with him to get there. Such a drag.

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I've been really depressed today. I think it's been coming on for about a week. I went back to the gym two weeks ago. It's a pretty intense cross training program. At first I was really dizzy when I started back. Worked that out nutritionally, but still was exhausted after each session. Needed to sleep most of the day afterwards. Wondering if the depression, which seems to develop on days I don't have the gym has something to do with the extreme exertion on the other days.

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That sounds very likely. That's why we recommend only gentle exercising during withdrawal.

 

Maybe you could look into something that is less intense.

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I've been on an allergy med for several years. Not an antihistamine. Something else. A while back, I ran out and went without it for a few days. I noticed myself getting more and more anxious and irritable the longer I went without it. Knew I would have to get off it eventually.

 

Week and a half ago I was running out of it again. I was so much lower on the other meds, I thought I'd try getting off of it officially this time. First few days were a little rough, but since then, I can't believe how much more energy I've had! It's as if the allergy med was acting as a "mood stabilizer " and bringing me down. I've about had it with the medical field as a whole. I feel like they're all just poisoning me!

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Great news that your energy has increased so much. Pace yourself, something I have to remember as well!

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Well, that was nice while it lasted. Unfortunately, I've hit another wave. The energy has turned to irritability, and my desire to actually go out and do things has disappeared. I really tried not to overdo it, but it's hard to figure out what exactly overdoing means any more.

 

I keep trying to understand where I went wrong. Did I do too much? Did I let my nutrition slip? Or is it just a wave that would have hit no matter what?

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Ah the dark side of an analytical mind ... "What caused this?" "What could I do differently?", etc. If you can't identify anything after a moderately thorough review of your notes from the last week or 2, chalk it up to withdrawal.  Withdrawal symptoms come and go in a way that is completely sensible to the CNS; unfortunately we don't want to submit to daily MRIs to evaluate that logic.

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Thanks, Scallywag. Nothing is really popping out. Oh well.

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I'm stuck in my den right now. A couple of guys are here replacing my sliding glass door, and I'm trying to keep my dog and myself out of their way. All I want to do is curl up on my bed and go to sleep.

 

This room is a mess. It has been since I made my daughter trade rooms with me almost two years ago. Why couldn't they have come last week when I had some energy? That way, perhaps, I could have made constructive use of this time instead of just sitting here and lamenting about how overwhelming all this seems. 

 

Earlier, I actually thought of a bunch of stuff I could write on SA while I waited, but that's all gone now too.

 

I hope last week's window returns soon. It would be great to start to DO some of the things I started thinking about like making this room usable. Right now that just feels so impossible.

 

When are they going to leave so I can go to sleep?

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This woman has Lupus, but I think her "spoon theory" is an excellent picture of what it's like to be in the worst of withdrawal. The only difference is that we have no idea how many "spoons" we may be granted on a given day.

 

Excerpt:

 

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

Read the rest here.

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

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I bought one of these Nutribullets a couple of years back. Often when I'm feeling depressed or anxious I'll make myself a "Nutriblast" which is just a bunch of veggies, fruits, nuts and seeds blended till liquefied. It lifts my mood so quickly I can't help but think it's a placebo effect. Either that or it just grosses me out so much it shocks my system into feeling better!

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Felt very agitated this morning with some mild akathesia. I tried a Nutriblast to relieve the symptoms. Nothing. Early in the afternoon as I watched the football pregame show, the anxiety turned into a full-blown panic attack. I ended up crying uncontrollably for about 15 minutes after which, I was fine.

 

I'm concerned that now that the allergy medication, which had a "mood stabilizing" effect, has cleared my system perhaps the antidepressant is causing rapid cycling symptoms. I know just one bizarre episode like that is not enough to draw any conclusions, but if it continues, should I consider reducing the Lexapro?

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Went to the gym this morning. Massive panic attack within 5 min of the beginning of class. Had to scramble out before I completely broke down. By the time I got home 10 minutes later I was fine. Not sure what to do.

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Hi Patricia.

Oh how I feel you.

Every time I hit a wave or a new symptom or when old symptom re-appears and I desperately start to analyse why. But then I realise that even if I knew why, in 99% of cases I would not be able to do anything about it. The harder I try to understand or stop or prevent something from happening, the harder it hits me and the longer it lasts because, usually, in the process of trying to fix one thing,  I mess something else up.

The only thing I can advise you – is the hardest of them all – acceptance.

Every time I catch myself manically analysing what did I do or what did I eat or if there was a weather change or atmospheric pressure change or full moon or the wind was blowing in the wrong direction in Sahara, I just try to switch to ‘LET IT BE/ I AM HEALING’ mantra.

Wishing you lots of strength

Kat

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Thanks Kat what you say is so true. Even if I could figure it out, the analysis heightens the anxiety so much it is hardly worth it.

 

I'm having a really hard time keeping track of symptoms on paper because I have a hard time keeping track of paper. So I try to track here.

 

I started having panic attacks out of the blue a week ago today. Panic attacks followed by uncontrollable crying spells. Had to leave my gym class early on Monday because I just couldn't handle all the people and activity.

 

Had trouble going out yesterday. Had that strong sensation of being "exposed". Just wanted to get home the whole time.

 

Today I have the internal vibrations and pin prick sensations going on with knots in my stomach. Panic attacks have subsided, however.

 

Still holding at 9 mg of Lexapro. Need to stay here a while longer.

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Saw my pdoc on Tuesday. I told him everything was fine because if I don't his only idea is more meds so why bother. I already have a 3 month supply of the Lexapro. I'm currently at 9 mg which he claims is a very small dose. Since I'm tapering, he thinks I should be off it within 3 months so I didn't need to make another appointment.

 

Wait! Six months ago, I had a biological illness "just like diabetes" that would require a lifetime of treatment and now he's just dismissing me? What the f***? This is so messed up!

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You know, I've been taking fish oil and magnesium faithfully since first finding SA, but I ran out of the magnesium about a week and a half ago. It wasn't until you mentioned it, Astro, that I connected the two.

 

Not only have I been waking up nauseous and agitated, but the cortisol spikes have returned. I wouldn't be surprised if the lack of magnesium is behind all of it. So thanks for bringing that up.

 

I just got some more. It'll be interesting to see what kind of difference it makes.

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Thank you, Alto not Astro. Duh! Sorry about that!

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Reduced my dose of Lexapro from 9 mgs to 8.1 starting last night. Resumed Magnesium last week. Panic attacks and anxiety have subsided. Just low energy which is nothing new.

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Nausea, anxiety and ruminations have been bugging me the past 2 days. I know the last reduction is a huge factor. I've also been more lax in my nutrition. Have to cut way down on the sugar. I should also cut out the caffeine, but without it I get so dizzy, I can't function. I have no doubt that it is fueling the anxiety and ruminations, however. I'll cut out the sugar and caffeine, give it a few more days and see what happens.

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I wrote this poem yesterday after being inspired by the book Healing from Psychiatry. Posting it here for posterity's sake.

 

 

 

My Darkness 

 

 

Don't take my darkness from me.

It is mine and mine alone.

In the darkness lies the best of me 

Standing like a stone.

 

Don't treat it as an illness.

Don't poison it away.

It waits for me with patient grace.

Waiting to come and stay.

 

Staying just a little while,

It comes bearing precious gifts.

It comes to give me peace and rest,

While through life's quandaries I sift. 

 

 

In darkness there are demons.

Yes, I know it's true.

But in darkness dwell also angels 

Waiting to see me through.

 

Don't take from me my darkness.

Don't label it what it's not.

It exists for my wellbeing 

To lead me to the spot.

 

The place of my emergence.

The place where I belong.

The place of my epic story.

Written from all deemed wrong.

 

Don't take from me my darkness

And all it has to offer.

It doesn't require your diagnosis 

Or the hideous "cures" you proffer.

 

Leave me in my darkness.

I'll let you know when I am done.

Then you and I will stand on even ground 

To face the rising sun.

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hi PatriciaVP

just reading thru your thread, fellow high dose lexapro survivor here, also going thru a rough time

I like your poem. I can relate to some of it anyway

 

I am relieved to see that I'm not the only one who experienced that excessive sleepiness on lexapro. Although I'm sad you went thru this too

I kept telling my drs about it, and they kept saying you're depressed, you need more/different meds

I knew it was the lexapro but each time I tried to get off it, things went so badly, I went back on.

 

now I have been off since May, "jumping off" as they say, at 2.5mgs and wishing that I hadn't done that!
I just reinstated at 0.2 mgs, at first just once a day, now twice a day

 

yes that's right, I take the whopping dose of 1/10 of one mg!! and it's helped with the horrible panic attacks, cortisol spikes etc that I was having

I'm still struggling but it's a lot better now

 

I'm mostly just popping in to say hi, and to urge you not to go too fast

I TOTALLY understand wanting to have these poisons out of our systems but now I am seeing that my brain needs time to heal and esp since I don't sleep well nor very much, and I think it's during sleep that your brain repairs itself...? I think that I need to give my brain a LOT more time to do this work of recovery

 

I wish you all the best in your journey. pop on over to my thread if you feel up to it, and you'll see we were going thru very similar symptoms at roughly the same time this past month

 

weird eh?

 

PS
i too have multiple diagnosis, have been on lithium, depakote, lamictal, haldol, phenathaizines, and on and on. Got a maternal grandmother and a paternal uncle who had manic depression. both self medicated with alcohol and were never properly treated but the symptoms were unmistakable and classic.

 

 

but back to me LOL I was given an anti psychotic as  teenager for NO GOOD reason, other than it was new and they were testing it on inpatients in mental hospitals, I guess.
I can only imagine that at least some of the problems I've had since then were related to the drugs I was given, and other issues are def from past traumas.

I am just now finding the true me and learning how to manage life, and I"m 60. wish someone had helped me with this decades ago, I might have had a decent life. instead i've been on disability most of my adult life

 

oh, you mentioned you have CP? my brother had that and he also had a very low tolerance for frustration. I wonder if some of your issues around that are related to your brain injury?

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Copied from a post I wrote on someone else's topic:

 

My CP is very mild. There's nothing I really can't do. It just takes a little more time and effort. For this reason expectations for me were high from the get go so I did have to learn to deal with frustration and just "keep up". A lesson I appreciate more and more the older I get. In fact, I see now that those early difficulties have given me the determination necessary to see me through the worst days of withdrawal.

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The last time I saw my med provider, he did not give me a refill on the Lexapro because I had a three-month supply left and he figured I would be off in three months anyway because much dose was "so low" (9 mgs). Turns out I only had one month supply and am running out quickly. I'm currently down to 8.1 mgs. The pharmacy contacted him for a refill, but he told them I was no longer on it. I've got a call in to him for either a refill or another appointment, but he is notoriously bad about returning these calls.

 

I'm scared that I won't get the refill on time, and I'm very angry with him for making this so difficult. The last step down from 9 to 8.1 mgs caused some serious withdrawal. If I have to cold turkey I'm really afraid of what will happen.

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oh dear that is very worrrisome!

is there any chance you can see a different provider and maybe not tell them the whole truth and get a full Rx that you can use to taper off of for longer?

 

I hope you hear something soon! and that it's good news

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Some pharmacies may give you a brief emergency extension, 7 days worth or so, while you nail the jello to the floor (get your doctor to call you back and confirm the scrip.)

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Patricia, how did this work out?

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Sorry it has taken me so long to get back to you. Just wanted to let you know that everything is good for now. I finally was able to confirm that my prescriber called in a refill to the mail away pharmacy. I haven't received it yet, but it should be here before I run out of the other. I'm hoping it will be a 90 day supply and not a 30 day supply like the last one.

 

The longer I can go without having to interact with him the better. I keep thinking about finding another provider, but I just don't think I can deal with explaining this to someone else who is probably just as clueless.

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BTW, thanks for the information on the emergency fill, Scallywag. Never knew that.

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Well, just got my liquid Lexapro refill last night and guess what? The refill was only for 30 days at 5 mg per day. Seriously, is the SOB trying to kill me?!!! I am currently at 8.1 mg and my last drop from 9 caused all kinds of withdrawal. I only told him about the dizziness because I didn't want him claiming the other issues were due to my original diagnosis and trying to drug me back up. Not after I've come so far.

 

Even dizziness for someone with cerebral palsy like me is an extremely dangerous withdrawal symptom. I'm hoping this argument will be sufficient to convince him to let me slow down. I keep thinking about trying to find another provider, but there is no one around here that I can find who even gets why someone would want to come off the drug no less has any experience withdrawing people. I'm thinking about approaching my PCP. I've only actually met with her twice, but I guess it is worth a shot. Worst she can say is no.

 

I just don't understand. I'm so tired of these games. So he thinks I should be able to get off quickly. Fine. But what's the harm in me going more slowly? It just means he gets more money because he sees me a few more times. Am I really that difficult to face that he wants to get rid of me ASAP? Aaargh..... I need a nap.

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I just don't understand. I'm so tired of these games. So he thinks I should be able to get off quickly. Fine. But what's the harm in me going more slowly? It just means he gets more money because he sees me a few more times. Am I really that difficult to face that he wants to get rid of me ASAP? Aaargh..... I need a nap.

 

 

I am so sorry your dr is being such a jerk!

 

and yes, what the hell is with them refusing to give us enough meds to taper slowly but they are all eager to OVERdose us in the first place?!?!?

 

I don't understand it. I think they don't want to face that they were lied to by the drug companies and that these drugs are far more dangerous/potent than they need to be, and actually quite dangerous

 

But it still makes absolutely NO sense to refuse lower doses or have to follow a patient longer as they withdraw. It doesn't make financial sense for them for sure.

 

 

I hope that your PCP is a bit more understanding.

 

 

I am preparing for the eventual "chat" with my PCP about getting a refill of my liquid lexapro and If she refuses I am going to ask her point blank, what harm could it possibly do to you (her) to let me take a low dose. Who does it hurt?

 

 

 

 

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