DMV64: reinstate Saphris?

[JanCarol]

Hey D - 

 

On 3/27/2018 at 8:36 PM, DMV64 said:

Also I don’t feel like I’m asking for changes just to make changes. I’m trying to be stable and not feel like I just want to die every day. I have been holding on the Saphris for seven weeks now.

 

I know you're not just doing it to do it.

 

Here's the pattern I see:

 

You change something.

You're still miserable.

You want to change something else.

 

But if the answer lies in not changing anything, then how will we find out the truth, if you keep making changes?

 

There is no "perfect dose" of anything.  This is about learning to tolerate and survive symptoms.  It's about learning what you need to learn in order to be drug free.

 

You should've seen the look on my new doc's face (natural GP) when I said, "My mood is not your business."  (and she still wrote "disordered mood" on my papers! Grrrrr!).

 

Mood, and well-being is not something that the drugs - or any combination - or any changes - can do for you.  Mood and well-being come from self-love, self-support, tolerance.  Holding your poor body and brain like you would a suffering child (see quote above), or a little baby animal:

 

 

That's your nervous system - scared, nervous, volatile, hungry, needing warmth and cuddles.  When your nervous system starts to upset you - look at it as though it's this little baby loris.  Speak softly, dim the lights, approach it cautiously and carefully, and above all:  gently, lovingly.   We are often very cruel to ourselves, try to "whip ourselves into shape," and that's often how we got sick to begin with.  Self-compassion is key to healing.

 

Or - in the words of the teachers I'm listening to right now:  your head/mind will do what it's doing - go into your heart, and feel the truth of it.  It's in your heart that you can stabilise.  The mind is a butterfly or a mad monkey, flitting from bush to tree to flower, and it does no good to fight it - because that's just what minds do.  It's better to watch it, and say - ok, bush, tree, flower, tree again - that's the mind.  The heart is a place of rest, of parasympathetic response, of s-l-o-w-i-n-g it down.

 

Additionally I don't remember how fast your December taper was - I only remember that it was too fast.  Holding for 6 weeks after a fast taper like that is nothing!  After that, the puppy, the antihistamines, the klonopin split, the allergy testing, the geodon updose and any other stressors that have rattled you - I would like to see you hold for another three months. That's late June!

 

On 3/30/2018 at 6:06 AM, DMV64 said:

I hope in two months time I can begin to taper again on the Saphris. 

 

Three, please.  Three months.  That's late June.

 

I'm hoping that you are beginning to see how little changes can stack up and slow your healing.  That's why we make as few as possible!  I know that's a long time to tolerate distress, but we haven't had one month that was the same as the last one since you got here.  We really need a solid stretch of no changes.

 

(it's good to see that your antihistamine has no direct conflict with your cocktail)

 

7 hours ago, DMV64 said:

Just like everybody else I’m struggling in my own way, maybe more than some because I seem to be so hypersensitive.

 

We're all pretty hypersensitive.  That's how we got drugged in the first place.

 

 

It's learning to "ride out" the difficult times, to be curious about your symptoms, to surf the waves, to learn resilience - and to learn to listen, too.  If your symptoms are asking for rest and quiet, then that's what you need.  If your symptoms whisper, "A mag bath would feel good about now," you may have to negotiate:  "Well, right now, I have a class to teach, but can I give you a mag bath later today?" and you will find that your symptoms might negotiate with you.

 

We're all individuals.  We're all sensitive.  Your journey - while a challenging one - is not so different to someone who was on just one drug, and is struggling with how slow it needs to be to survive the symptoms.  It's hard to learn to do nothing when you are suffering.  We've had people on just one drug, but with akathisia so bad they couldn't function at all.  The hardest thing to learn is to stay still.   On my sig it says, "Holding is hard work."   I didn't put that there for laughs.

 

7 hours ago, DMV64 said:

Are you suggesting I drop the Geoden then back down?

 

If the updose  -  10mg? PLEASE put mg not ml in your signature!!!!  You take 12 mg in the AM and 6 mg in the PM for a total of 18 mg - is helping you then stay there.    If you're doing better, just stop with the changes.   Just stay where you are.  The only reason to go back down to 16.2 at this point is if the updose made you worse.

 

But stay there.  No new pets, no new supplements, no changes in drugs or doses for at least 3 months.

 

We haven't gotten one steady month from you since you've been here, which is why (I suspect) Alto is frustrated.  I've gotten frustrated, too!  We can't determine where you really are, because you haven't let all the changes settle down.

 

Some people haven't been able to settle from their too-fast tapers until 6-8 or even 10 months out.  Think about that, and I don't believe it's unreasonable for me to ask for a 3 month hold.

 

I'm sorry if this feels like a beating.  It's not meant to - I just can't emphasize enough that if stability is what you want, then stable doses is what you need.  I've been saying this for months now, and I will not say it again.

 

Hang in there.  If you are seeking support, I recommend that you support other members - go to their threads, and "visit," and they will come to visit you.  Mods are spread too thin to do much hand-holding, and we ask that members support each other.

 

I know it will be hard to find someone in person who understands what you are going through.  The dominant culture (especially in AA) is "Doctors prescribed it, so take your drugs," with no thought as to the consequences of long term or excessive drugging.  Obviously, the doctors have a lot to learn or you wouldn't have ended up on the cocktail you did.

 

So - again, hang in there.  Support other members.  You can do this.  Throw yourself into your yoga to help with symptoms.  You got this.  Long hold.  It's hard work, I acknowledge that.  Explore our Symptoms and Self Care section to see what others have done to get through their distress.  Print out Dr. Joseph Glenmullen's Most Common symptoms of Withdrawal and track your daily progress on there.  See if you can learn your own patterns.  Look to the windows (you're having them, that's a great sign) with gratitude, and during the waves, treat yourself like that baby animal. 

I hope you see the sun today.  (does running help or make it worse?  Look for symptoms up to 3 days after a run to see if it ramps you up).

[DMV64]

4 hours ago, JanCarol said:

changing

Hi JanCarol. Thank you for all the things you have written here. I am trying. I am also trying when I can manage it to look around on the site and say hi to new members or just say hi to someone. I wish I felt like I could write something more meaningful to people but my brain is not in that place right now. 

I have many tools that I use to manage my withdrawal. But it is sometimes so intense that even the tools of mindfulness and yoga and using loading me and just being with myself are not enough Or at least I don’t feel like they are now. A lot of this is acceptance of how difficult and how long this is. I work on it every day.

 Anyway I appreciate all your help all suggestions. I am hoping now that just holding on for three months I will begin to see more of the sun. 

-D

[DMV64]

5 hours ago, JanCarol said:

change

Does this mean I should not get the allergy shots? When I went to the doctor it was recommended to help with the dog Zelda.

[JanCarol]

Hey D - 

 

That's a good question.

 

I'm trying to remember what allergy shots feel like.  I was only a child when I had them.  Do I remember getting a little drowsy from them?  I'm not sure.

 

Is this like the immunology version, where they give you the shots to try and acclimatize you to your puppy?  One shot a week?   How many weeks before they start working?  When I was a child, I had to keep taking them - as an adult, will you be able to stop?  Or will there be maintenance shots?

 

Here's the thing.  Yes, it is a change - but it is an adaptation to the puppy change, which you already have made.

 

If you can, try your first on on an easy day, not a busy one.  It might be fine.  But this is withdrawal, so be prepared in case you need to go to bed and rest.  It may get easier as it goes, too - as your body begins to learn the process.

 

If you react to the first one, and it interrupts your functioning too much, then maybe don't take any more.  You might even ask for a "half dose" for your first one, to see how it will go.

 

It may make your hold time longer - as it is like a life stressor.  If, for example, you were going through a breakup or a move - an adjustment or a change - I would strongly suggest that you hold longer to accomodate it.

 

How long this extends your hold time depends on how the shots go for you.  I have no way of knowing that - I'm not in your body.

 

You will see the sun! 

[DMV64]

48 minutes ago, JanCarol said:

allergy

Hey. I am actually having a good day today. The doctor said they were going to start and a very small dose. It would be every week for eight months and then it would go to maintenance of every three weeks. I’m not sure if the shots have an end point I will have to ask.

[DMV64]

I forgot-the Geoden is 2mg not 10.

[ChessieCat]

The other option is to delay getting them for 3 months to give your body a chance to stabilise.

[DMV64]

2 hours ago, ChessieCat said:

option

Also possible. Right now the Clarinex is causing my irritable bladder (interstitial cystitis) to flare. So hoping there’s a different antihistamine that doesn’t do that. 

[JanCarol]

Hey D - 

 

 

7 hours ago, DMV64 said:

I forgot-the Geoden is 2mg not 10

 

Please put mg in your signature!  Ml (millilitres) doesn't tell us your actual dose. 

I agree - I got the updose wrong.  You updosed by 2 mg, you are on 18 mg.  12 mg am and 6 mg pm.

 

Good luck finding an antihistamine that doesn't affect the bladder.  It's kind of what they do.  The "non-drowsy" ones don't cross the blood brain barrier, but in order to stop an allergic reaction, they can affect all kinds of systems.  Have you tried a sinus steam yet?  Olbas inhaler?  What are your allergy symptoms?  Sinuses?  Or Itchy skin?  Eyes?  

 

I like Chessie's idea of delaying - however, if you're miserable due to allergies, you may have to try it.  Especially if you find that antihistamines upset your bladder.  (again, that's a condition that may be exacerbated by something - or a combination of somethings - in your drug cocktail). 

 

I am wondering if anthistamines counteract your immunotherapy.  The docs are saying that the "immunotherapy will make the antihistamine more effective."  Here's my thinking:  you take immunotherapy to have a tiny reaction, to get your body used to the substance you have injected (the shot).  If you take an antihistamine, that stifles the reaction, the healing - counteracting the immunotherapy.  Hopefully, the immunotherapy will reduce or eliminate your need for antihistamines.  I know - when I was a child, we did both concurrently (I was a miserable child, and from what I hear about your visit to the allergy specialist - you had a lot of childhood allergies, too).  But the way I'm thinking now, I wonder about the wisdom of that.

 

For example, I am taking prolotherapy shots for my knee.  When I've had a shot, I am not allowed to take NSAIDS or aspirin, because the shot is meant to inflame the knee and force it to heal.  If I take NSAIDS, it counteracts my body's natural healing response by reducing the inflammation that will cause healing.  I'm beginning to wonder if that might not apply to allergy shots and antihistamines, too.  I'm pretty certain that if you ask your allergist, they will laugh it off, because that's how they've been doing it for decades.  But - prescribing harmful drugs has been going on for decades too, and so I ask a lot more questions now.  

 

I was thinking of you last night, as I was doing my "self-soothing, ground and go to sleep routine."  It only takes a minute - or 5 at the most.  I write about it here:
JanCarol Undiagnosed - Toe Tapping (and heart patting, but I'm recommending the toe tapping for you).

 

It' works on a very basic, basic level.

 

Your other techniques, yoga, mindfulness - require the engagement of your mind.  When you are in a tizzy - it's hard to focus, hard to still and settle enough to practice these techniques - even when they are well-practiced and you have skills "in the bank," so to speak.

 

But this technique is a thing we do when we are little babies, before we are verbal.  It is natural, soothing, grounding, and healing.  Try it, and see if it helps.  It's a movement, so if your symptoms are about akathisia, it can help with that, too.  

 

Challenge:  how much of your symptoms are akathisia - inner restlessness - and how many of them are actually anxiety/fear?  Read about akathisia here:

 

Akathisia Info - My Akathisia Experience

 

Akathisia vs. Restlessness & Agitatation  (Surviving Antidepressants)

 

 

Akathisia is frequently diag-nonsensed as "restless legs" and "anxiety," and more drugs are offered, compounding the problem (and may be what happened to you.)

If this is akathisia, or has an akathisia component, this may help you:

 

(I think Kim Eng is Eckhart Tolle's partner)  I love her practice space!!!!!  Someday.....

 

I  hope you see the sun today!

[DMV64]

6 hours ago, JanCarol said:

akathisia

I hadn’t really considered this might be what is happening. It just feels like I wake up with a bolt of terror and then I have to deal with that until gets better during the day. I’m going to read a little more about it.

I’m considering just not taking the antihistamines and see how I do. Because I can’t really deal with the burning bladder, I think I could more likely deal with the allergy symptoms which are runny nose, itchy eyes, sometimes sore throat. I do a lot of handwashing. And I try not to get right in her face but it’s hard!

 

[DMV64]

6 hours ago, JanCarol said:

Have you tried a sinus steam yet?

I have Neti Pot and also an essential oil blend I am using. Interesting thoughts on immunotherapy. Makes sense. Right now all my other allergies are up to the tree pollens too so that is not helping.

Re: tapping, will check it out. I did some EMDR therapy for awhile in NYC and it was really helpful. 

I guess I am feeling like I am just disabled. And wondering if I will emerge, somehow, more windows, more access to a more peaceful self.

[DMV64]

7 hours ago, JanCarol said:

inner restlessness

I checked that out, some of it "fits", some is THANKFULLY not what I am experiencing. Great info! Thank you!

[JanCarol]

Hey D - 

 

Toe Tapping is not like EMDR.  EMDR involves emotional and mental access.

 

EFT does too, especially if you say the affirmations.

 

This toe-tapping goes directly to the body, the nervous system, and the energetics of the body.  A baby does this instinctively, to self-soothe.

A baby could not do EMDR or even EFT.  This technique talks to your body and nervous system directly, bypassing the mind and emotional body.  That's why I recommend it for you when you are in deeper distress.  It's the perfect thing when one "gets stuck" and "can't think."

 

I'm glad that you are not suffering from severe akathisia.  Maybe this is a good time to remind you that - no matter how bad it is - it could always be worse.  Always give thanks that it is not worse than it is!  (I know, this is a backwards optimism, but it is true!)

I hope you see the sun today!

[DMV64]

44 minutes ago, JanCarol said:

tapping

OK I’m going to give it a try! I’m happy to report that I think I’m having a window and I’m so excited.

[DMV64]

Checking in here. I have had a few better days. Feeling hopeful. Also had some Reiki and zero balancing which was great. I am finding I really need to do less. And to try to lie down in the middle of the day to slow my heart rate, even if I do not sleep. Just rest. I am getting ued to Zelda the dog and I think my allergies MIGHT be calming down. Catching myself with negative thoughts and cutting themoff. I notice alot of futurizing occurs, which is just not good for me.

On a really nice front, I have reached out to 2 or 3 different people to forge friendships to deal with my loneliness and committed to one co-op shift a week, to have social interaction. This is really good for me. 

Thanks to everyone here who has been helping me.

-D

[wantrelief]

What a great update, DMV.  It is so brave of you to reach out to people in the effort to develop new friendships as well as working at the co-op.  It is so hard to do this when feeling well, so I am really impressed you've managed this in the middle of withdrawal.

[DMV64]

2 hours ago, wantrelief said:

brave

Thank you!! I feel it is a real accomplishment!!

[wantrelief]

It is!!  

[DMV64]

Yes! Because it’s so hard to go out really. Not just hide in the house. 

[DMV64]

The depression in the last two days has been hideous. I feel like I really cannot go on. I have been seriously considering the hospital. I feel I am on so many "brakes" that of course I am depressed but yet, I cannot just get off them. It's a trap and today I do not feel like I am going to make it. I think i really need help. 

[ChessieCat]

49 minutes ago, DMV64 said:

I have been seriously considering the hospital.

 

It's understandable that you want someone to help you, but seriously do you think that it will be beneficial to you?  They might give you something which makes you feel better in the short term, but what would be the long term effects of it?

 

Everyone (even when not taking or getting off psychiatric drugs) experiences periods of depression, sometimes worse bouts of it than at other times.

 

"The depression in the last two days has been hideous."

 

Two days.  I realise it probably feels like a week or two and that it is tough to go through, but it has only been 2 days.  Just take one day, one hour, one minute at a time.  I know it's hard but you will get there.

 

It's times like these that we really need to dig deep and use non drug techniques to get through the tough times.  Unfortunately there is no easy solution.  I don't think going to hospital is the answer.  In your mind your are possibly thinking of the perfect solution, not the reality of what would happen.  Sort of like a "I wish" for this to be taken away.  Unfortunately what you are "dreaming of" is not what would happen.

[DMV64]

1 hour ago, ChessieCat said:

hospital

I really don’t think going to the hospital is the answer either. I just have felt so desperate on and off, it’s hard to feel like it will ever get better, especially with the amount of drugs I am on then how long it’s going to take to come off of them. When I’m in the depression I just don’t feel like I can make it. I try to dig deep and it is the hardest at this time to access the tools.

 Thank you for stopping by and writing to me. 

[wantrelief]

11 minutes ago, DMV64 said:

I really don’t think going to the hospital is the answer either. I just have felt so desperate on and off, it’s hard to feel like it will ever get better, especially with the amount of drugs I am on then how long it’s going to take to come off of them. When I’m in the depression I just don’t feel like I can make it. I try to dig deep and it is the hardest at this time to access the tools.

 Thank you for stopping by and writing to me. 

I am sorry you are feeling so awful, DMV.  I wanted you to know you aren't alone.  I am on two drugs at high doses and also get very overwhelmed about the amount of time it is going to take to get off of them.  I am in tolerance (I think) to citalopram and have been stuck in a deep depression for awhile now so I totally get how you are feeling.  It seems impossible to keep going like this but as CC said, just take it minute by minute if you have to.  You have described having better days so hold on to the feeling you had on those days; they will return!

[DMV64]

3 minutes ago, wantrelief said:

overwhelmed

Yes it is totally overwhelming. It helps to know that I’m not alone. And to be reminded that I have had much better days. Thank you.

[ChessieCat]

13 minutes ago, DMV64 said:

When I’m in the depression I just don’t feel like I can make it. I try to dig deep and it is the hardest at this time to access the tools.

 

I understand.  Something which I found helps me is what I read in a book.  "It's just a feeling and feelings change".

 

And that's where the support of this forum helps.  Being able to help you get through the tough times.

 

A couple of years ago I had to go into my local city just before Christmas.  Whilst I was sitting at the computer in the morning I could feel the panic start to build up in me.  All I wanted to do was to give in to it, and I felt that it would be easier to do that.  However, from previous experience I knew that I would end up curled up in a ball crying hysterically and I knew how sick and depleted that would make me feel.  I decided that I would do concentrated deep breathing.  It was very hard work and whilst I was doing it I felt like I was clinging on by my finger nails and just wanted to give in to it.  But I kept remembering how I would feel if I did.  I kept going and eventually I was able to bring the panic under control.

[DMV64]

2 minutes ago, ChessieCat said:

support

Thank you so much for sharing this. I really feel like I am hanging on by a thin thread. Need moment to moment skills. 

[ChessieCat]

I've just posted this on another member's topic:

 

Something you might find that helps.  You could set an alarm to remind you to do this.

 

Throughout the day check in with yourself to see how you are feeling.  Hourly would be a reasonable period of time.  Sit quietly and do some concentrated deep breathing to still yourself and your mind.  I started doing this 2 years ago.  It became second nature to me and I do it when I find myself uptight in my body, or my mind starts racing.

 

The reason for setting the alarm is for a couple of reasons.  It means that you don't forget to do it and it also helps to bring yourself "back down a bit" before things build up too much.

[DMV64]

1 hour ago, ChessieCat said:

Something you might find that helps

 

This is great. It is hard to do anything when I am in the depression. Or the anxiety for that matter. I forget everything it feels like. Then when it lifts I think: why didn’t I remember??

 

I feel scared when I feel like dying. Like it is just too hard to be alive. And somehow I have to try to find something to hang on to, to get me through, plus function in my work as best I can.
 

Edited April 9, 2018 by ChessieCat
increased font size

[DMV64]

I think the other piece is that I usually have anxiety. Not as much depression. Now I am struggling between the two, sometimes it is hard to tell even which I am feeling.

[DMV64]

Y'all! Look at this article that came out in NY Times!

https://mobile.nytimes.com/2018/04/07/health/antidepressants-withdrawal-prozac-cymbalta.html

[JanCarol]

Hey D - 

 

13 hours ago, DMV64 said:

Need moment to moment skills. 

 

Jon Kabat-Zinn gave me a gift on his "Mindfulness for Pain Relief" CD - 

 

If a whole breath is too much - just focus on the inhale.  Survive that.

 

Then focus on the exhale, and survive that.

 

Look!  It's time to inhale again....

 

Breaking it into half breaths, when it was too extreme for a whole breath.

 

Have you tried the toe-tapping yet?

 

I hope you see the sun today!

 

[DMV64]

I have been noticing at this stage of things I am being thrown back to visit trauma. I don't know what is happening...I will just be doing something or nothing and have a memory, maybe for the first time, or some already known. Past sexual trauma, memories of feeling unsafe around my mother, being woken up when falling asleep in the carseat as a child by her yelling. Just all kinds of stuff. Old grief over my brother's death. It's like someone has opened up my brain to all the dark places. Would love other's thoughts...experiences...

[wantrelief]

I think this is another aspect of withdrawal.  I have also experienced uncomfortable memories suddenly popping up or thinking about someone I haven't thought about for a long time - usually that person is associated with some uncomfortable feeling such as guilt or shame.  I feel like this phenomenon falls under the withdrawal symptom of "intrusive thoughts" or at least that is how I think of it.  I am really sorry you have been experiencing memories of such awful traumas and grief.  Hopefully it helps to know you are not alone and it is a withdrawal symptom. 

[DMV64]

9 minutes ago, wantrelief said:

alone

Yes. Yes.  Very helpful. Thank you. It’s like an ambush. 

[wantrelief]

1 hour ago, DMV64 said:

It’s like an ambush

That is a good description of how it can be....really awful, just try to redirect your thoughts as much as you can.

[wantrelief]

4 minutes ago, DMV64 said:

These last few posts came to me to read just at a time when I was feeling so alone. Thank you everyone. I just came back from my therapist and of course she’s very concerned about my state of mind which made me feel worse

Hi DMV,

 

I think you might have posted this in my thread by accident so I quoted it here for your thread.