DMV64: reinstate Saphris?

[Snorky]

On 2/4/2020 at 1:16 PM, DMV64 said:

Yes! I’m still doing the cold showers and the ice on my face. I think it helps a lot. I’m doing OK currently I am sick with a little bit of a sinus thing going on but I’m just trying to whether it without any antibiotics. In other news of my body we have figured out something that has changed my life so far. Which is the fact that if you have several UTIs you can build a biofilm in your bladder which the bacteriaLikes to hide underneath and the antibiotic can’t get to it and it doesn’t show up on a culture. So I did this protocol using a biofilm Buster and an antibiotic to target exactly what they needed to target. Before I did this I did a DNA analyzation of what I need exactly. I feel 80% cured. Amazing.

 likes to hide underneath and the antibiotic can’t get to it and it doesn’t show up on a culture. So I did this protocol using a biofilm buster and an antibiotic to Target exactly what they needed to target. Before I did this I did a DNA and was was Asian of what I needed exactly. I feel 80% cured. Amazing.

I’m going slow on the GA run. I have like a zillion syringes in every calibration you can imagine so I’ll be using them as I drop down.I’m going slow on the GA run. I have like a zillion syringes in every calibration you can imagine so I’ll be using them as I drop down.

It’s true when I got into this I thought maybe it was a year commitment. It looks like it’s going to be five or more. But I’m getting there. I’m starting to feel a little more clear in a little less anxiety. The Parkinson’s syndrome’s seem to be subsiding they’re not totally gone, but they’re definitely less.

Thanks for checking in on me. I was thinking that I hadn’t been here in a while. I hope you’re doing OK and I’ll let you know how it goes

Hi D

 

Hope you don’t mind me hijacking your thread. I’ve unbearable head tremors associated with my successive venlafaxine and amitriptyline CTs. Get other nerve pain too, but the head tremors are the most debilitating neurological symptoms I face. Does this sound like the Parkinson’s syndrome you experienced? 

 

Many thanks 

[DMV64]

3 hours ago, Snorky said:

Parkinson’s

So far it seems to be calming down. But it does sound like the symptoms I had. So maybe it will calm down.So far it seems to be calming down. But it does sound like the symptoms I had. So maybe it will calm down.

[Snorky]

52 minutes ago, DMV64 said:

So far it seems to be calming down. But it does sound like the symptoms I had. So maybe it will calm down.So far it seems to be calming down. But it does sound like the symptoms I had. So maybe it will calm down.

Thanks. I had a full neuro assessment in 2018 and all clear. It seems weird that I could get “drug induced Parkinsonism, when I’ve been off the drugs since 2018 and 2019 respectively.

[DMV64]

Just goes to show you. Powerful stuff. 

[Snorky]

9 minutes ago, DMV64 said:

Just goes to show you. Powerful stuff. 

I don’t think so. Much more likely to be WD, or something new.

[DMV64]

Yes that’s what I meant. Withdrawal

[Rosetta]

Glad to see you are doing ok and that problem is resolving, DMV.

 

💖Rosetta

[DMV64]

2 hours ago, Rosetta said:

doing ok

Thanks for stopping by! Yes feeling ok...how are you??

[Rosetta]

I’m ok.  Lots of bumps, that’s all.

[DMV64]

@jancarol  @manymoretodays

 

I think I have had a bad reaction to a Levaquin bladder instillation. They told me it would not be systemic because it was a direct instillation. The first 4 days were fine and then I woke up with terrible tachaycardia (sp?) and blood pressure spike, plus I found out I had texted someone in the middle of the night. Half sentences, half garbly. Anyway, I am still "coming down" off the heartbeat. Which is usually low like 60  or so from running and yoga. Went up to 97. Now at 80.

I am so upset. I had to spend almost $500 to get all the equipment and compounded mixture to catheterize myself twice a day. I went to the doc and told her what happened. Usually I see the CNP and so I had to explain the whole thing to her. She was surprised to find out CNP was getting advice from someone who is an expert in dealing with the bladder and biofilms. The whole thing is a mess and now we have to figure out what to target next with something I can tolerate.

All this screwing with taper but I MUSt deal with this bladder pain and so far this DNA protocol is the only thing that has helped.

Just needed to cry here.

[manymoretodays]

(((((((DMV)))))))

And oh man!  So sorry DMV64.

Keep us updated, okay?

I will get by again, when I can too.  I'm kind of "vacation mind". 

Wonderful visit with my brother and some old family friends and ski-ing.

And then just so busy.  Yoga studio close by, where I thought I might do certification, someday, is closing.

She'll keep me posted though, on when she does upcoming trainings.......so, that's good!

 

Waving, waving my wand DMV64!  Darn it!  Again, so sorry, you've had a heck of a couple of months now!  Enough!

 

L, P, H, and G,

mmt

[DMV64]

Hey. Thanks. This is so crazy. I don’t know if I mentioned my husband nephew had a massive stroke. Not to whine here but come on universe. 
I really thought the local bladder instillation would be ok

[Rosetta]

I’m thinking of you, DMV. 

💖Rosetta

[DMV64]

Thank you! I have been doing pretty well. Took a little break as I am dealing with the bladder stuff. How are you?

 

[Rosetta]

It was a rough day today, but it turned out all right.  I’m in a wave again.  Ugh.  It will go soon.  Today was better than yesterday.
 

Glad you are feeling well!  

[Kori]

Hey everyone I am new here and experiencing the worst I've ever in my life. 

I am having extreme discontinuation issues, debilitating. 

April 18th I stopped Saphris cold turkey

Was taking 5mg @ night for a little over a month.

April 24th (5 days later) debilitating withdrawal symptoms (panic, anxiety, weightloss from not being able to eat, tingly chest and arms, extreme restlessness, sweaty hands, cold and hot feelings, insomnia, weak, not okay at all. 

 

Dr prescribed gabapentin 300mg 3xs daily

Seroquel for sleep and anxiety ( only taking at night for sleep on and off)

Cymbalta 20 mg nightly

 

I'm in the worst state of my life and ive never been more scared. My psych is not educated enough on this topic and I'm not sure what to do at all. Ive been in and out of the emergency room 4 or 5 times. 

Thank you for any help ❤❤❤

 

DMV I know you have gone through something similar, any help is greatly appreciated!!!

Kori

[manymoretodays]

Hi Kori,  I just got you started and approved.  Your thread is here: 

 

[DMV64]

On 5/2/2020 at 5:56 PM, Kori said:

April 18th I stopped Saphris cold turkey

@Kori

Kori,

I have not been on and so sorry to have missed your post.  The saphris withdrawal for me was just like you said-all those symptoms-very debilitating. I had to go back on and taper down slowly to finally get off. This is just my experience-going back on might not be right for you. My biggest symptoms were: terror-beyond panic, worst in the morning, inability to eat, generally fear and agoraphobia, and a definite drop in productivity.

The good news is I made it off! It can be done! Its a little tricky because Saphris is a wafer, but I managed.

The docs were throwing things at the wall trying to stablize me. Ugh.

Message me if you want!

Much love to you, you are not alone...

xo

[DMV64]

@JanCarol @manymoretodays Very quick DMV update. All mostly well. Latest Geoden drop is giving me some agitation, add to covid and the state of the world. wondering if I should hold? Did not get to change signature yet, but I dropped to 11 about a week ago.

[DMV64]

@manymoretodays @JanCarol @Rosetta

 

Hello Friends...I think I need a little help. I am on 6mg liquid compound Geoden. Doing pretty well. Accidentally made a dosing mistake! (Sept 1 or right around there) Up to 9.5mg for 8 days! When I realized (Sept 9 approx) I dropped back to 6mg hoping the symptoms would not be too bad and I could wait it out. So far I am having some "light version" symptoms of terror/anxiety upon waking. But nothing like I used to get. At first I had very little symptoms, maybe about a week and I noticed these symptoms. I really do not want to updose. Do you think it is safe to wait it out? Should I see if it gets worse and then if it does would you suggest updosing and how much? And if the symptoms hold here, how long until they go away again? Of course if the start going away all of this will be mute! Here's hoping!

I realize y'all might not have answers to all these questions, but maybe you can point me in the right direction if not! Much love and thanks! DMV

[ChessieCat]

1 hour ago, DMV64 said:

 

Accidentally made a dosing mistake! (Sept 1 or right around there) Up to 9.5mg for 8 days! When I realized (Sept 9 approx) I dropped back to 6mg

 

 

Geodon has a short half life.  Do you split your dose?

  

On 4/11/2014 at 5:34 AM, Altostrata said:

 

Because of its short half-life, Geodon is usually taken twice a day.

 

 

From my calculations using your dates you've been on 6mg for about 16 days.

 

How were you feeling before the accidental updose?

 

As you stated you have 2 options, hold or updose by a tiny amount.

 

Please note that these are what I would be considering and I'm not speaking as a moderator with these suggestions.

 

Have you noticed any improvement in your symptoms over the last week or so?  If yes, then you might consider staying on 6mg and continuing to hold until at least 1 week after you feel WDnormal.

 

If not a tiny updose might help.  It would be better to start with a very tiny amount and increase again later if needed than to risk taking too much.  If it was me and I decided to updose I'd start with 0.25mg and see if that helps.  If after 1 week there is no improvement at all then you could try increasing by another 0.25mg. 

 

[DMV64]

54 minutes ago, ChessieCat said:

Do you split your dose?

Hello!

Thanks for your reply! I do split my dose into 4 actually (I wake up like clockwork at 2am to pee, so it works out. Thank you irritable bladder). I had to do this because I was have crappy symptoms. Since then it has been very smooth sailing.

I am still watching carefully to see if the symptoms are improving or holding or getting worse. Honestly, I cannot tell yet. I am finishing some antibiotics (omg never ever floxin-I read how it blocks benzo receptors (something like this) and in a day or two you have a serious withdrawal on your hands.) so that can affect how I feel, PLUS my husbands nephew just died of an overdose.  : (  Services tomorrow.

So...unless it gets very bad I am going to wait a few days to assess.

If it gets worse or no improvement I will try the tiny updose.

I am really kind of mad at myself for making this dosing mistake. And you know I felt NOTHING different from it.

DMV

[ChessieCat]

4 minutes ago, DMV64 said:

I am finishing some antibiotics (omg never ever floxin

 

Could possibly be a major contributor.  If it was me I would not be updosing Geodon.  I posted the FDA warning links in Post #1 after my doctor wanted me to take Cipro and I refused:  cipro-levaquin-azithromycin-z-pack-and-other-antibiotics

 

7 minutes ago, DMV64 said:

PLUS my husbands nephew just died of an overdose

 

This will definitely be causing added stress.

 

7 minutes ago, DMV64 said:

I am really kind of mad at myself for making this dosing mistake.

 

It's done and you can't change it.  I've done the opposite and reduced my dose.

 

9 minutes ago, DMV64 said:

dosing mistake. And you know I felt NOTHING different from it.

 

8 minutes ago, DMV64 said:

So...unless it gets very bad I am going to wait a few days to assess.

If it gets worse or no improvement I will try the tiny updose.

 

I think considering the other 2 big contributing factors and there is probably also the added stress from being annoyed at yourself over the updose, and the fact that you felt no difference when you increased, then holding seems like the better option.  Try to be kind to yourself and get through using non drug coping.  I'm sure after what you've been through before that you have lots in your toolkit. 😉

 

This might help:

 

  

On 8/23/2020 at 3:00 AM, Brooke said:

I'd say it took about a year for me to feel "in control" of the waves. And by that I mean that they didn't scare me anymore, and my attitude was more of "put on your seatbelt, here we go again" rather than "oh no, what if this never ends and this is who I am forever?" Once I accepted them as part of the situation, they didn't have as much of a handle on me and I was able to work and live through them in a more productive and nurturing way. 

 

[DMV64]

10 minutes ago, ChessieCat said:

doctor wanted me to take Cipro

God! I TOLD them the effects and they said-oh it is a local bladder instillation-it is not systemic. Well in three days it was systemic. I texted people in the middle of the night my blood pressure and heart rate shot up - it was horrible.

Ok so yes. Antibiotic finished today (augmentin-hope that one is not too bad, I seem to have tolerated it pretty well) and services tomorrow. So yes lets hope I can hold.

Funny I felt nothing on the updose!

Thank you so much.

[DMV64]

26 minutes ago, ChessieCat said:

not be updosing Geodon

If I have to, 0.25 per dose (x4) or total dose? Hm. That would be tough to measure but I think I could do it. Symptoms bad now but I need to eat

[ChessieCat]

42 minutes ago, DMV64 said:

If I have to, 0.25 per dose (x4) or total dose? Hm. That would be tough to measure but I think I could do it.

 

0.25mg per day additional.  You could increase only one of your doses.  Or two at the most, perhaps #1 and #3 of the 4?

[JanCarol]

D - it's great to hear from you!

 

Chessie is right on the money with the geodon.  Agree totally with her hold vs. updose advice.

 

We've all done it.  I did it like Chessie, whoopsie daisy, I'm on 60% of what I meant to be!  I got lucky, and managed to stay there.  But that was lithium - a different animal.

 

Also about being kind to yourself.  It's easy to get caught up in:  "Is that a symptom?" "is THAT a symptom?"  (I think it's even worse now that COVID is about).  And then: "Should I DO something?"

 

So - if you hear yourself saying that - then DO something.  Take a shower, a walk, sing a song, wash the dishes, take a nap, or 3 long slow deep breaths.  I love doing a 1 minute tai chi form sometimes.  You might prefer an asana.  

Learn to think of "DO something" as not necessarily about the drugs.  Take good care of yourself!

 

Breathe, you got this.  

 

I hope you see the sun today!

 

[DMV64]

31 minutes ago, JanCarol said:

Breathe

Hi!!

yes I have been trying to up my coping mechanisms. Running now right away in morning since that is when I think I feel symptoms. Also Wif Hof breathing. Cold shower. 
It is helping. 
Today is the funeral. Going to try to be as present as possible for hubby. 
xo

DMV

[Rosetta]

Hi DMV.  I’m sorry that you made a mistake.  Hopefully, it will smooth out quickly.  I don’t know much about updosing or tapering, but I use hot baths or showers for most issues.  Epsom salt baths, too.

 

So very sorry to hear about your nephew.  My thoughts are with your family.

 

Rosetta

[DMV64]

2 hours ago, Rosetta said:

Rosetta

Thank you so much. Yes I am using my tools. I hope it works ❤️Thanks for stopping by. Xo

[DMV64]

@ChessieCat @JanCarol ugh. I am starting to get palpitations nausea and agitation with a little shakiness. The palpitations suck. What do you think? Wait and see what tomorrow is like or ?

[ChessieCat]

On 9/24/2020 at 9:37 AM, DMV64 said:

I am finishing some antibiotics (omg never ever floxin-I read how it blocks benzo receptors (something like this) and in a day or two you have a serious withdrawal on your hands.) so that can affect how I feel

 

What you are experiencing might not be related to Geodon.

 

https://www.drugs.com/sfx/floxin-side-effects.html

[ChessieCat]

Could also be a drug interaction of floxin and Geodon:

 

https://www.drugs.com/interactions-check.php?drug_list=2330-1540,1741-1109

[DMV64]

1 hour ago, ChessieCat said:

floxin

Oh no- I am not on floxin. What I meant before was I can never take floxins. 
terrible. 
I was on augmentin but stopped Wednesday.  I felt like I was holding steady. Yesterday was the funeral. I thought I was ok but then had a bad bladder flare this morning. (This is usually related to inflammation- hemmeroid flare too). But I don’t know why the flare. Anyway, symptoms started to seem worse midday. Hoping it was just a bad day. Someone told me to stop eating all grains and gluten and it will help my flares and brain fog. 

[ChessieCat]

2 minutes ago, DMV64 said:

Oh no- I am not on floxin.

 

That's good.  How you wrote it, it was a bit hard to work out what you meant.

 

But even the fact that you've been on an antibiotic can cause increased symptoms.  Your current symptoms are most likely a combination of all the stressors and drug up/down and antibiotic.

[DMV64]

3 minutes ago, ChessieCat said:

combination

I hope so!! My eta is 2022!