DMV64: reinstate Saphris?

[DMV64]

The injections are called platelet rich plasma

[DMV64]

I don’t know what to do. I was thinking of just stopping vyvanse I really don’t think I would feel much from it. I have stopped it previously. I don’t know. It would be less interactions and maybe it would be safe to try uribel. Sigh. I think the azo is making me nauseous. 

[DMV64]

My husband says I cannot rule out the jump off the Saphris for the memory thing-might not be Uribel at all.

[ChessieCat]

2 hours ago, DMV64 said:

My husband says I cannot rule out the jump off the Saphris for the memory thing-might not be Uribel at all.

 

Can you pin point when it started?  He may be right.  If it started when you started Uribel it may just be coincidence.

[DMV64]

Oh my gosh! Yes I did start the medicine within days of jumping off the Saphris I’ll see if I can pinpoint it further

[DMV64]

 OK I tried to line up my dates looks like I started taking the uribel about 10 days to two weeks before I jumped off Saphris. I know in the beginning uribel didn’t have this side effect of total cog fog.  But then again maybe it just take a little while to build up in my system. So I’m not sure what to think. Where it is coming from I mean

[JanCarol]

Hey D - 

7 hours ago, DMV64 said:

The injections are called platelet rich plasma

 

I have been investigating this for my knee.  

 

It can be expensive - here it averages about $1200 out of pocket (and we have national health insurance, as well as private insurance) because it's considered an elective procedure.

I have found a place (thanks to a mate in karate) down the coast that can do it for about $400 out of pocket (because they have found a way to put it on the National Health Medicare)...I am looking to do this later this year.

So - I understand how injecting platelet rich plasma in my knee might help with the grinding, and provide more cushioning.

But my question is - how does this work on bladder?

Re:  Uribel / Saphris withdrawal.  You may never know.  Any time you make more than one change at the same time, it is impossible to determine what is what.  Though, from what I've learned about Uribel (since I first started researching it for you) - I can see how - especially with the interactions - it could cause that. 

It may just be interactions causing it too.

Please do not quit the Vyvanse, it must be tapered.  If that is what you want to taper next, then that will be your next taper.

I hope you see the sun today!

[DMV64]

@JanCarol Hello there. Do you know I’m not sure exactly how it works in the bladder. It has worked wonders for someone on the board. I have the phone number and I’m going to be cold in there tomorrow or sometime before we hit the beginnings of my sons wedding would start Thursday and go through Sunday.

I do not want to taper the vyvanse next. I want to get off the Geoden. How long until I can start that? I think it’s been 21 days right now off of Saphris. 

Btw thanks for all the research!

[DMV64]

I feel like I’m having more of a hard time jumping off the Saphris than I expected. I mean is this normal? I felt like I had gone down low enough to sort of sneak away from the Bear as they say. But I’m up-and-down and brain fog and crying. Is that normal? Plus of course the added extra fun with the bladder

[Glosmom]

Hi DMV,

Sorry you are struggling.   I can't speak from my personal experience only from my daughters experience in being her care taker.  She jumped to zero from .025 of Risperdal after tapering it for over 2 years.  She has had MANY waves (and windows) since she jumped to zero 6 months ago.  They are definitely improving but it has not been an easy calk walk by any stretch of the imagination.  So my vote (which doesn't count for anything) is that it is very normal to jump to zero and STILL have symptoms of withdrawal.  Time is the healer I think....

 

Best Wishes to you in your healing. Glosmom

[DMV64]

Just now, Glosmom said:

Time

Thank you for answering so quickly. I feel like I’m going crazy today. I guess I was just thinking because I had gotten down so low that I wouldn’t have this many symptoms. My memory is like a mess. Plus I have this thing going on with my bladder and I can’t tell if the medicine I took was part of the memory thing or it’s just the drop off. 

 Anyway thank you. And this stinks. 

[DMV64]

Any opinions on this list? One of my holistic healer’s sent it to me as a personal work up of what would help me with my healing of my gut and also the brain fog

B-12 with Adenosylcobalamin

B Complex

Pharma GABA

Barley Grass Juice Extract Powder

Calcium and Magnesium

 

I also have a long list of food but I thought I would start here

[ChessieCat]

Time is free, not just $$$ but also of possible issues.

[DMV64]

What does that mean?

[ChessieCat]

You have recently stopped Saphris.  Soon after you started and then stopped Uribel.  You are having issues.  You need to let things settle down.  Adding in anything new at this time is only going to confuse things even more.  And the brain fog which you seem to be wanting to address has only just started and you don't know what caused it.

 

You were asking for opinions on the supplements.  Supplements cost money.  If you don't take them you will save money.  So time is free.  And you might find that with time things will settle down.  You seem to be constantly trying to find a fix (not just now but in the past if I recall correctly) and some of your "fixes" have not helped and some have caused you issues.  Sometimes it isn't about finding something to fix an issue it's about giving your body and brain the time and rest from adjusting to drugs/supplements that is needed.

 

Some members have issues with B supplements because they can be activating.  Taking a complex is not recommended because if you react to any one of them you won't know what caused it.  And you may react to more than one and that might be a major reaction.

 

My personal opinion is that you might be best just giving yourself time to stabilise and then once stable start your tapering again.  After all your end goal is to reduce your drug burden.

 

Anyway, they are just my thoughts for what it's worth.

[DMV64]

Thank you for this. I think you are right. I do tend to try to DO something to fix. So yes, time. Time and patience. Though I still have to deal with my bladder issue and I am nervous about that but something has to be done there. 

[DMV64]

The brain fog has been happening awhile. But I feel lately it has gotten much worse. And you’re right, I don’t know if that’s from ending the Saphris or starting the uribel or both : /

[JanCarol]

Hey D - 

 

6 hours ago, ChessieCat said:

Some members have issues with B supplements because they can be activating.  Taking a complex is not recommended because if you react to any one of them you won't know what caused it.  And you may react to more than one and that might be a major reaction.

 

My personal opinion is that you might be best just giving yourself time to stabilise and then once stable start your tapering again.  After all your end goal is to reduce your drug burden.

 

 

Thank you Chessie for weighing in with your experience (and saving me the words that I was going to say)!

 

ANY naturopath who gives calcium with magnesium needs to have their head examined, because they chew each other up, and you might have some of one of them left over.  They should be taken separately, so that they don't compete for metabolism.

Magnesium is on our list of good things, and might help with relaxing your bladder some.   Barley Grass powder is less likely to cause issues - some folks have had good results with green smoothies:  

  and - as with anything - some folks not so much.

The GABA fiddles receptors - like Chessie said, this is not the time to try this or the B Vitamins (even though your Saphris and Geodon deplete these - it is iffy to add them in). 

Are you on Magnesium already?  Do you take Magnesium (Epsom Salts or Mag Chloride) baths?  These do amazing things for calming my nerves and "setting me right" again.  Do you take Fish Oil?  These two supplements (if you can tolerate them) are the only ones that seem to make a difference in withdrawal.  Everything else seems to be risky and (as Chessie so wisely said) expensive.

 

Your cog-fog and mood may have a lot to do with your bladder difficulties.  I remember when hubby had his prostatectomy, he was prone to UTIs for awhile after that (being an Aussie man, he didn't drink enough water, and held for too long).  I remember him saying to me how grumpy and awful he felt, and he asked me, "Is this what you go through when you have UTI's?"  I said YES!  It does affect your mood and cognition to have your bladder malfunctioning.

Something else to consider (which goes along with what Chessie is saying about time) is that your drug load may be causing your bladder problems.  Here is an article which talks about that:  https://onlinelibrary.wiley.com/doi/pdf/10.1002/tre.581 .  I'm not meaning to freak you out - but - as you gradually reduce your drug load, you may see huge improvements in your other health conditions.

Like Chessie said, I'm reluctant to suggest that any new supplements are a good idea - you have 2 events here - a health problem (bladder) and a recent jump off Saphris.  (and you recently recovered from sinus surgery!)  Your symptoms may be caused by one - or the other - or a combination of both.  The best solution for this is to wait, not taper, no new experiments - and get your bladder better.

Also read here, to see how many of us were harmed by naturopaths:  http://survivingantidepressants.org/index.php?/topic/5662-how-good-are-naturopaths-and-other-alternative-practitioners/    I'd say more harm than good, at this juncture.

 

Are you getting daily sunlight?  Walking outside - even if just for 5 minutes a day - DAILY - is a huge boost to mood.  Seeing the sky, the horizon, a few trees and birds, has a wonderful effect.

AND - if your cognition is down - then maybe your body, as it heals, is telling you to take it easy.  Watch kids cartoons, read juvenile fiction, play solitaire, but go easy on your brain, let it heal.

I hope you see the sun today!

Edited September 10, 2019 by JanCarol
typo

[JanCarol]

Generally, naturopaths have the same understanding of withdrawal that doctors do = naught.

[DMV64]

 Thanks for all the good information. I have some time to look at those links today I think. I do take magnesium and fish oil. I think it was you who suggested that in the beginning of my journey here. I didn’t know that about calcium and magnesium. I am taking a little bit of that so I’ll have to separate them. And Gratefully I do get out early morning for a little run an outside time

[Rabe]

Hi DMV....good heavens you have been on a roller coaster!  

I agree with Chess Cat.  Doctors always make drugs sound benign.  They aren't.  Everyone is different and you just dont know how things are going to affect you be it a vitamin or anything else.  I would wait, with all that has been going on, and see how things go for awhile.  This may all settle on its own...but if you add something else the waters just get muddier and then you have one more thing that you dont know is causing what and even if things were to improve you dont really know it it would have happened anyway or if it was the new thing.

I hope you feel better soon!!  I think it could be the jump.  I often get this really ok time period after a change and then get hit with all sorts of things so I do think it could be that.  

Take your time and keep tracking your symptoms.  

I think you and I chatted before about trying to 'fix' things...as my tendency is to want to do the same.  My don reminds me that that usually leads me to a larger swamp of stuff, bless his heart!  Love and hugs DMV!!!💜

[DMV64]

@JanCarolOk they gave me a new medication called Trospium Chloride which supposedly does not cross the blood brain barrier?

ran it through the checker and did not see that many interactions. I am wondering if I can switch out the hydrOXYzine antihistimine for one with less issues like XYZAL. The hydrOXYzine was kept in because supposedly it helps with bladder pain.

[DMV64]

@JanCarol It seems to conflict with cogentin. Can I stop taking that? I was only on it for the saphris? 

[JanCarol]

Hi D - 

 

Cogentin will need to be tapered, too.  It puts its fingers in the neurotransmitter systems, as well.  (why do you think they use it?)  Is this the next drug you want to taper?   It is a brake, so should help you to get off of it (even though it's not one of your "major" drugs).

What is it with your doctor giving you drugs without checking the interactions?  The "blood brain barrier" is only one aspect of adding a drug to a cocktail!!!

Surely you've given him a list of the drugs you are on?

 

Hydroxizine is also a brake, but - I am not a doctor.  It's up to you if you want to switch antihistamines.

And I have to ask - are you trying to fix things?  

Stability is the key for getting off of the psych drugs - but your other health issues are making it hard to keep stability!

 

I hope you see the sun today (sorry this is short, I have a class in an hour)

[DMV64]

8 hours ago, JanCarol said:

taper

 I would like to taper The

Cogentin  I am on .5. It’s pretty small pill so I guess I will have to crush and water taper?  They originally gave it to me as a side drug to Saphris but now I’m off of that. However I’m still on Geoden. But never had any kind of asthkinesea (I know I spelled that wrong!) reaction in years of Geoden. 

I don’t know what to say about the bladder medicine. I don’t think I can keep taking the AZO over the counter indefinitely.  So I really don’t know what to do. I have gotten bladder instillations  and they help a little bit. 

I have to get off all these brakes, I’m not trying to fix anything I’m just trying to feel like a functioning person.

 I am sick today and I actually have three classes to teach so today’s probably not my best day to think about all this. 

Plus I’m kind of coming down off all the excitement of my son getting married Saturday. I didn’t know that was going to be a little sad feeling of further separation after the wedding. 

As far as the drug interaction checker goes, most of my interactions have to deal with the symptoms  I experience: mental confusion, dizziness Kind of thing. I think I did run a drug-free checker and because I have such a cog fog forgot what it said!

[DMV64]

 My doctors do have a list of all the drugs I’m on. I don’t know why they do what they do. I’m wondering if Claritin is also a brake? Or Xyzal? Maybe I could just switch? I seem to be doing worse mentally lately and I only switched back to hydoxyine  from the Xyzal  because the bladder doctor said that medicine also soothrs the bladder 

[DMV64]

8 hours ago, JanCarol said:

Stability

It is really hard and I forgot to mention the sinus doctor gave me something called gentamicin to put into my Netti pot nasal rinse  I know it is a form of antibiotic to keep me from getting sinus infections. I don’t know why didn’t think of mentioning airplane on my list but I guess it to go on there

[DMV64]

@jancarol can you help me do the maths so I can start a Cogentin taper?

[DMV64]

Actually I am on .25 Cogentin

[JanCarol]

Hey D - 

16 minutes ago, DMV64 said:

Actually I am on .25 Cogentin

 

Ok.  this might be possible to do a little more quickly than the usual tapers.

BUT START AT 10% for 4 weeks.  If it goes smoothly, you might decrease that to 3 weeks.  Any less than 3 weeks, and your tapers might stack up.

It's good that it's such a small dose.

You might consider a test taper of 25% (0.188)to start, and if that goes smoothly, taper more gradually after that.

 

If it doesn't go smoothly, prepare to updose (you will know within 4-5 days).

 

So - if this is how you want to do it, 

Month 1 - 0.188

Month 2 -  0.169

Month 3 - 0.152

Month 4 - 0.137

Month 5 - 0.123

Month 6 - 0.111

Month 7 - 0.100

Month 8 - 0.090

Month 9 - 0.081

 

Month 10 - 0.073

Month 11 - 0.065

Month 12 - 0.589

Month 13 - 0.530

Month 14 - 0.477

consider jumping off somewhere in here.

 

(and I know, I know 14 months - but that's with an accelerated first month, which I suggest with trepidation - but if you are going to do large drops, it's better to do them at the beginning of a taper than at the end.)

So - making liquid - how can we help?  

This is tiny, tiny.  What size syringe will you be using?

It is possible that - after the first drop - you can alternate tapers between Geodon and cogentin, so that - as you decrease the cogentin, you are also decreasing the Geodon.  That might feel more productive in the long run.

AND - you teach 3 classes in one day!????  Wow.  I'm bushed after 2 x 45 min classes, and wracked after doing 5-7 classes a week for just one month.

You've got more going for you than you give yourself credit for.

 

 

[Carmie]

Hi DMV, 

 

How have you been doing?💚

[DMV64]

Hey there!

Well mixed. Lots of challenges with my physical body. How are you??

[Rosetta]

Hi DMV,

How is it going?  I hope you are feeling all right.

Rosetta

[DMV64]

3 hours ago, Rosetta said:

feeling

Hey there! Thanks for checking in. I am having good days and bad days but more good days! 

How are you??

[DMV64]

@JanCarol @Rabe @manymoretodays @Rosetta 

 

Oh my gosh! Did anyone see the program last night called this is life with Lisa Ling? It was about with drawl it’s focused on benzo’s but it could have been anything. It talked about how the doctors have no idea how to take someone slowly through a withdrawal. How they get no education on that. It showed somebody tapering. I really hope it gets some attention

[direstraits]

yes.I thought she did a good job....it was validating to see what we're going through given some attention for once, even though the focus was on benzos.

maybe they'll get to ADs next. it's a start.

 

it made me quite emotional.