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DMV64

DMV64: reinstate Saphris?

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Carmie

Hi DMV, 

 

Thinking of you and hoping your pain subsides soon. Enjoy the bridal shower 💚

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DMV64

Thanks Carmie...The shower was nice. But I am still not responding to antibiotics that I should be responding to. Seeing specialist Monday. Sigh. Feel scared.

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DMV64
On 6/28/2019 at 5:41 PM, Carmie said:

feel ill too

I think this might be happening to me a little bit. @JanCarol I am trying to rest. It is not easy. I feel like I need someone to take care of me.

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Rabe

Hi DMV...did you let the dr know about he supplements in regards to the Sulfa drugs?  They can interfere with them.  Perhaps 3 days is long enough?...dont know what the doctor will say.  Just know i am thinking about you!  Take care!!!💜

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DMV64

Hi friends. I’m just checking in because I’m having some of my suicidal feelings today. They come and go I woke up this morning just overwhelmed and feeling like I can’t keep doing this. I feel sometimes every day is just a day to fight through you know? Anyway I’m trying to just be in the moment

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manymoretodays

((((DMV))))

Yah, that sounds good, to stay in the moment DMV.

And that's hard when those feelings hit.

You know, once in awhile, and for some hours or even a whole day........I get those feelings too!

Are you still feeling sick?  Any improvement with the urinary tract infection, as yet?

Have you been able to slow down on committments?

 

I wonder if you might be adjusting now, to the change, in how you are dissolving your Saphris? 

It is best, when changing your formulation a bit, to just HOLD too.  Give it the time required to adjust.  Unless you felt immediately bad with the formulation change.  Did you?

And that's so interesting, the article that Glosmom found, about the lower dosages of AP's, and then what she observed with Glo.  I'm still studying that one.

 

Just today too.  Some rest.  Maybe some healthy distractions.  And movement, gentle movement on any kind might help.

This too......I presume.......will pass for you.

If it helps to post/write then do that.

 

Sending all the healing vibes I can muster.

 

Love, peace, healing, and growth,

mmt

 

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DMV64

Thank you Mmt. I just wrote you a long response and then it deleted itself. My UTI seems to be getting better they did a lot of tests and a sonogram yesterday I’m waiting for the results. I didn’t feel much different when I started my liquid tape or so I don’t think that’s it. But you never know. I did not see the article you were talking about I guess I have been kind of distracted. Could you point me toward it? I’d really like to read it. I don’t know what’s going on maybe the conversations with my husband that were difficult maybe the antibiotics. Thank you for writing me

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Rabe

Hi DMV....you have been dealing with so much lately on top of the tapering which is challenging enough.  But add the other stressors and I think it makes it all that much more challenging to keep the head above water or even want to.  You are so kind and loving DMV and have come such a long way.  I wanted you to know that you are not alone, that you are truly cared about and thought about daily.  I know that things will get better for you...I just hope it is ASAP!!!

Much love and many hugs for you DMV!!!  💜

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DMV64

Thank you Rabe. Your message made me cry. In a good way. Sometimes I feel so alone. So tired you know? I do feel like I have been going through a lot. But I also do t want to just wallow. 

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Rabe

You're never alone here DMV.  You re much cared for and about.  You are not wallowing...I think with all that has been going on it would be something if it all didnt slow you down.  And coming here and sharing how you feel is reaching out...not wallowing at lll.  If so, then we all are wallowing together....but I dont think that is true.  You are a trooper for sure. Give Zelda a hug!!💜

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DMV64

Thank you you are very sweet. You know Zelda is a light in my life. I try to take a nap every day I think it helps me with the taper. And she jumps up and sleeps right on my belly

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Rosetta

DMV,

I'm glad you can reach out on SA and get support for those feelings.  No one should go through that alone.  It is so very important to have a safe place to say that you feel it.  

 

This is temporary.  Please remember that.  It will be gone soon.  You are dealing with a lot right now.  I am feeling very sad right now, but no SI, (I'm so surprised, in fact!) and I'm realizing that (for the 30th time) it's something that is very temporary and "insignificant."  I don't mean that it should be ignored or that it's not important to pay attention.  It's a reason to find people with whom to interact even if you cannot tell those people about the feeling.  What I mean by insignificant is that it's fleeting and not something to take seriously as a course of action.  You know that on one level, but on another level that feeling can become very convincing.  Almost like a commercial -- you see it over and over and you start to want that thing even if you had no interest when the commercial first appeared.  

 

For me, I would start to feel worse and worse about my life and to become convinced by the feeling.  You must short circuit it.  Take an action that will make you feel connected.  I know that's hard if you feel anhedonia or hopelessly disconnected.  Keep trying.  If you must, just distract.  The idea is to dodge the feeling until it's gone.  It will go.  Try to focus on something else.  

 

It's so infuriating.  Even when there is absolutely no chance I would act in that feeling it affects me so negatively!  

 

You are very loved here, DMV.  We care.  I'm very glad you have your dog back!

 

Rosetta

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DMV64
6 minutes ago, Rosetta said:

anhedonia

Yes. I feel this a lot. I try to hook into something.  I see people here like puzzles and stuff. I just feel like I can’t get hooked you know? Same with knitting. Sometimes it’s a memory thing. 

Slso the problem of getting convinced by fleeting feelings. Thank you for writing me. It helps to know people care. Xo

i am on my way to the beach now!

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DMV64

I am starting to worry that I might have bladder cancer. I thought I was getting better. But now I am in pain again. Researching my symptoms and test results so far is what is making me nervous. I did have a small amount of blood in my urine. Now that I am on antibiotics it’s hard to tell if there are any bacteria. My last test came back negative and I still have pain. I am seeing the urologist again in about 10 days. Honestly, he kind of was one of those rushing doctors so I made an appointment with a second opinion doctor too. Worried. 

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FarmGirlWorks
Posted (edited)

Hey @DMV64: so sorry to read about the pain and urinary problems. Just wanted to share my brief breast cancer scare in March. Symptoms kinda pointed to it and there was thickening and pain but then they did more detailed work with an ultrasound and -- ah memory where are you? -- something else. Negative. I share this because it is so natural to get amped that something is wrong when it isn't. Of course sometimes it totally is -- oh, I have had several of those -- but not always. So hang in there and try to remind yourself that you'll know more in 10 days. Breathe deeply. And get a second opinion if you can, always helps.

Edited by FarmGirlWorks

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DMV64
14 hours ago, FarmGirlWorks said:

second

I am getting a second opinion. It’s hard to be in pain like this. The depression is coming on hard. I will hold on to your words. Xo

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JanCarol

Hey D - by all means, get it checked out.


But keep in mind that these drugs change the operation of your entire body.

We heal - but - for at least 5 years I thought I had a cardiac arrhythmia.  Gone.

For 3 years I thought I had something horrible wrong with my bowels.  Better (still digestive issues, but now it seems to be about pancreas / gallbladder.  Perhaps this, too, will pass).

Anything which connects to the vagus nerve is going to be affected by these drugs....

Parasympathetic-Innervation-photo.jpg

 

These drugs are given for "overactive bladder" (a set of symptoms arranged as a "disorder" in order to sell more of these drugs), for example.

So any symptoms in any of these these regions  - can be caused by these drugs, and the withdrawal from them.  This is why when I hear people say, "But I like my drugs, they work for me," I bite my tongue, because I know, over time, it is not good to re-regulate/deregulate any of these sympathetic  / parasympathetic processes:

Vagus_Nerve.jpeg?1440364223

 

So - by all means, if you have symptoms that frighten you, get them checked out (I did lots of ophthalmic,  cardiac & bowel testing, and even had bowel surgery - wish I hadn't) - to make sure it's all fine.  

But if they find nothing, it is not cause for further anxiety.  Let it go.  There are many other potential causes for distress besides cancer.  Time heals many of these things, and the lower your doses, the better.

Breathe.

There was a line from a Tom Hanks movie, where he captures a Russian spy during the Cold War.  He says to the man, "Are you worried?"  And the stoic little spy says, "Would it help?"

The answer is, of course, no.  It won't help, and - anything along the vagus nerve - it could exacerbate.

 

To ease your mind, you might read other people's experiences here:  

 
There are techniques for calming the vagus nerve, here:  

 

And remember - "health anxiety," is also part of withdrawal:
 

 

I hope you see the sun today!  (and that your tests come out fine!)

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DMV64

 Hello there JC.  As usual thank you for all of your information. I guess I’m just a little freaked out because there was blood in my urine and I have a lot of symptoms and I thought it was getting better with this one course of antibiotics and then it started to get worse again.

All the things you said about with drawl and the Vagus nerve Makes sense. I’m just so tired of being in pain. And I have to say, as I think I’ve said before, I did not like the way that doctor treated me. There is such a thing as a viral UTI. And he just kind of pooh-poohed it like it couldn’t be possible because it was rare. I’m like rare does not mean never. Nobody seems to know that much about viral UTIs or even how to test for them. But I want to rule it out, maybe even taking anti-viral. Trying to be patient. 

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Rosetta

Checking in with you.  Have you been feeling any better?  I hope so. -Rosetta

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DMV64

 Hey there thanks for checking in on me. I actually think I’m starting to get better. I’m so grateful. 

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wantrelief
Just now, DMV64 said:

I actually think I’m starting to get better.

Great to hear, DMV!

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manymoretodays
Posted (edited)
On 6/26/2019 at 1:18 PM, Glosmom said:

Hi @manymoretodays ! Here is the link to the article. I posted it originally over in another Forum  and it is  "Why Taper? SERT transporter occupancy studies show importance of gradual change in plasma concentration..."

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3534356/

 

Hi DMV,

 

Here's the post where Glosmom gave the link to the article, that was referred to in her post to you, with her observations on Glo.

Her initial post to you is here

 

I think you had asked about this.

L, P, H, and G,

mmt

 

p.s.  loving the charts and diagrams that JC added here(above) too!!

 

Edited by manymoretodays

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DMV64

Thank you!!

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DMV64
On 7/5/2019 at 9:27 AM, JanCarol said:

For 3 years I thought I had something horrible wrong with my bowels.

I have been diagnosed (and have symptoms of IBS with constipation) AND irritable bladder. Both of which I treat with vitamins and one med that I didn't plan on changing...but maybe....

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DMV64

Hey guess what? My bladder symptoms seem to be resolving! Fingers crossed. Took antibiotics. Also Structured Silver and Olive leaf!

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JanCarol
53 minutes ago, DMV64 said:

one med that I didn't plan on changing...but maybe....

 

an IBS med?

My Mom took a little blue pill for IBS.  Bentyl 10.  

It's another anticholinergic.  Another brake.

 

Please advise?

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DMV64

It’s a brake. I think we talked about it in the very beginning at some point. It’s for my  painful bladder syndrome or what they call interstitial cystitis. I’ve had since 2004. At some point I was put on gabapentin to help with the pain. I really had no intention of coming off of it because of how bad the pain is without it 

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FarmGirlWorks
On 7/9/2019 at 5:11 AM, DMV64 said:

Hey guess what? My bladder symptoms seem to be resolving!

Awesome news!

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JanCarol
On 7/9/2019 at 10:11 PM, DMV64 said:

My bladder symptoms seem to be resolving! Fingers crossed. Took antibiotics. Also Structured Silver and Olive leaf!

At last!  

"Structured Silver?"  How is that different to colloidal silver?  Is it in "structured water" or something?

And oh yeah, I remember the gabapentin.   One of those chicken-or-the-egg situations.  You were on psych drugs before they added the Neurontin.  It may be that, once you are off the psych meds, you won't need it.  (but it still needs to be tapered, as it's a psych drug, too.)

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neroli

Hello DMV64

 

So pleased to hear your bladder problem is clearing.  What a relief.

 

Wishing you love and all the best

 

Neroli 💜

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DMV64

Thank you! It is taking some time. Besides the infection I have a condition called interstitial cystitis which is like irritable bladder. So I think the infection really flared that up and it’s taking some time to come out of it. Thanks for checking in. How are you doing?

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neroli

At least it appears to be clearing up, even if it is taking some time, so that is heartening to hear.

 

I'm up and down - legs get so very heavy and wobbly at times and my baseline leg symptoms seem to have deteriorated but still able to get up and shower myself, get my meals etc.

 

Best of wishes from the heart

 

Neroli 💜

 

 

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DMV64

@JanCarol @manymoretodays I need amino acid help. L tryptophan and tyrosine are not good for me my taper or my bladder. But everyone says they are important building blocks. What other aminos can I take??

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JanCarol

Hey D!

Why do you need to take any aminos at all?

Do you eat meat?  Meat & dairy contains most of the aminos your body needs.

The only supplements we suggest are magnesium and fish oil.

Everything else is your own guinea pig experiment.  If I were to recommend to you the aminos I take - you might react poorly to them.  Everyone is different.

When you are settled, not sick, not suffering withdrawal, that is the time to look into aminos.  For now, fish oil in ample quantities will rebuild and soothe your neurons, especially when coupled with quality magnesium.

Save your money, work on your taper and your non-drug methods.  Breathe!  You'll be fine.  The human body is amazingly resilient.

I'm so glad that your bladder is doing better.  If it ain't one thing, it's another, eh? 

I hope you see the sun today!

(ps my house does not have mold.  There was a wee bit around the window and moisture - but nothing substantial...I still burn clove oil and have a protocol for keeping the room airy and dry...but whew!  dodged a bullet with that one!)

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DMV64

OK I will wait on the amino acid’s. It’s so great to hear that you don’t have mold!

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DMV64

Also. I have come back anemic again. My ferritin is fine so they are suggesting B vitamins and a stool culture to check for blood loss. Awhile ago I bought some liquid B12 recommended here but never took it because someone said it might be too activating. Which might not be bad right now. How much should I take?

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