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DMV64

DMV64: reinstate Saphris?

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DMV64
12 hours ago, direstraits said:

emotional

It made me quite emotional as well. I do have benzos in my cocktail, but I really think with drawl is very similar for all of us. To see the agony of these people are going through and to be validated that it really can be that bad was amazing. I feel so sorry for the parents of the son who took his own life. My husband Watched it with me

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DMV64
On 9/18/2019 at 9:27 AM, JanCarol said:

consider jumping off somewhere in here.

I dont know how I missed this.

Ok sounds good. The alternating I need more explaination. 

I have done water taper before so I think I am ok on that.

I have: 1ML syrings, 5ML, 10,ML. A scale, and cylinders and amber jars. 

Last time years ago I crushed the pill. sometimes in the jar, some times in the mortar pedstal. I measured however many ML of water I was dropping by (can' recall) shook the jar and took my dose. Thats how I got off klonopin first time. 

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Rosetta

Hi.  I'm ok.  Not great, but ok.  I hope I can watch that program someday.  -Rosetta

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DMV64

@JanCarol @manymoretodays @Rabe @Rosetta Popping back in...with all thats been going on I had to step away. Had the bladder distention and injection surgery. It seems to have really helped so far. But I did have to have gas anethesia.

Anyway everything else is ok, anxiety a little better. Will be catching up with you all I hope

xo

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JanCarol

Thanks for checking in - take care of yourself, be patient with yourself.  This is a major procedure, so give yourself plenty of time and self-care for recovery!

 

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Rabe

Hi DMV...just wanted you to know that I have been thinking about you!!  SO happy to hear the surgery went well and that you in general are doing ok!  The is FABulous!!!  Continue to take care and heal!!!  Love and hugs!!💜

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DMV64

Thanks my friends. It’s nice to have things going well   

Right now I all lying in bed snuggling Zelda! 

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DMV64

@JanCarol @manymoretodays @Rabe @Rosetta 

Hello all. I haven't been on in awhile doing well, looking to start Geoden taper after new year. I have a compounding pharmacy for this which is great!

On the not so great side I have been diagnosed with Parkinson's syndrome, probably from the drugs and the taper. Been shaking, twitching, off balance, trouble writing. I am just hoping it will go away as I go down. 

I can't take that Urabel for my bladder-its too much. I feel like a zombie on it. Bladder is better but we are not there yest. May need more procedure. 

On the happier side son and wife are coming Friday for the holidays!

Hope you are all well. xo

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JanCarol

Hey D - 

 

Good to hear from you!

 

10 hours ago, DMV64 said:

I have been diagnosed with Parkinson's syndrome

 

This is more likely from the drugs than from the taper.

And it may not be "Parkinson's" but "Parkinson-like symptoms" known as Tardive Dyskinesia.  The good news is, as you come off your neuroleptics (that's Saphris = GONE! and Geodon) this can improve.

Strong motivation to keep tapering!  (and, likely a good reason to continue with cogentin).  There are supplements which can be helpful - I remember seeing a great article about - niacin? zinc? B12?  Vit D? Manganese?   I wish I could remember but now cannot find it.  I did find this:  https://www.webmd.com/vitamins/condition-1607/tardive+dyskinesia.aspx which suggests that Ashwaganda, B6, BCAA's, melatonin, gingko might help (not all at once though!  Remember to try new supplemnts in small doses, one at a time!).  The Aminos make good sense, as muscular dysfunction can be related to amino deficiencies, and the drugs rob you of them.  You also might consider increasing your fish oil, as that helps smooth nerve-to-muscle interactions.

Here are some other recommendations: https://www.alternativementalhealth.com/nutritional-treatment-of-tardive-dyskinesia/ 

You might talk to your nutritional therapist to see what s/he recommends.

Sorry to hear about the bladder thing.  It's my hope that some of that might resolve once you are off all the anticholinergic drugs.

Enjoy the holidays with your son & family!

And - see the sun today?

Cheers,
Jan

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DMV64
6 hours ago, JanCarol said:

nutritional

Hello! I’m going to check into these things that you are recommending. I’m going to start the Geoden taper after new year. And I guess I will hold onto Cogentin. I wonder if this is a permanent condition? Or maybe it will resolve when I am off everything

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DMV64
6 hours ago, JanCarol said:

anticholinergic

Are mine all like this? I know cogentin is? And my antihistamine. Are all antihistimres?

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DMV64

Part of me does not understand how symptoms can be getting worse when I’m going down on my taper. It just doesn’t make sense to me. Now this new crop of symptoms has emerged. And I don’t know if it’s related but my memory is terrible it’s really scary sometimes like I can’t remember where I parked my car or I’m standing in front of the cabinet wondering why am there. I have a tribute of this also the drugs but it’s just odd that I haven’t had that symptom before but I had a pretty heavy if not worse drug load

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JanCarol

Hey D - 

 

1 hour ago, DMV64 said:

I wonder if this is a permanent condition? Or maybe it will resolve when I am off everything

 

We won't know until you've been off all neuroleptics for 2-3 years.  You should start to get signs of improvement as you taper.  As I look at your sig - you've tended towards dystonia since 2017 (which means these drugs should never have been prescribed in the first place!).   And again - it makes me angry that you get diagnosed with Parkinsons, but I'll bet they didn't mention the drugs.  They never look at the drugs.

 

1 hour ago, DMV64 said:
8 hours ago, JanCarol said:

anticholinergic

Are mine all like this?


Here's the best list I've found tonight:  https://www.theseniorlist.com/medication/anticholinergic-drugs/  

Thing is, I've read about anticholinergic effects of SSRI's and SNRI's, too, but cannot find anything about that.

From what I've read - acetylcholine (choline = anti-choline = anti-cholin-ergic) - sounds a lot like anything that messes with the vagus nerve.  It says it counteracts parasympathetic and smooths muscle contractions...but yes, antihistamines can do this (but newer antihistamines do it less than older ones).

 

1 hour ago, DMV64 said:

Now this new crop of symptoms has emerged. And I don’t know if it’s related but my memory is terrible it’s really scary sometimes like I can’t remember where I parked my car or I’m standing in front of the cabinet wondering why am there.

 

This is cog fog.  It is a drug symptom.  It is a withdrawal symptom, too.  

I think it happens when you need rest and retreat.  Your brain is telling you to shut down and take it easy.  Time to watch kids' cartoons, read comic books, or play stupid video games.  Your brain will come back online.  Especially as you taper your drugs.

It's asking a lot for your body to be on all of these chemicals and not suffer cog fog and symptoms.

It may be happening more now - not because you're tapering - but because you've been on them for awhile, and your body & brain are starting to complain.  Or maybe it's happening as a part of your healing from your taper.  We can't possibly know.  All we do know is that it gets better as the drugs go away.  How much you recover in part depends on you, and partly on how badly you were harmed by the drugs (which is a huge variable, because no "official" studies are taking note of this harm, there is nothing to compare it to).

Acceptance is important.  "Brain not so good today," is okay.  Beating yourself up because your brain is taking a rest will not help your brain heal.  You will notice windows and waves in cog fog.  Sometimes you'll feel bright and active and creative.  Sometimes, not so much.  

I'm still limited in what I can do.  If I have a heavy teaching schedule - I get home and I want to get into my projects - painting, writing, communicating, but the list of projects gets ignored while my brain fuzzes out.  Okay, then.  Let it fuzz.  Get done what you must, and there will be more creative times later.

I hope you see the Sun today!

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DMV64
8 hours ago, JanCarol said:

 And again - it makes me angry that you get diagnosed with Parkinsons, but I'll bet they didn't mention the drugs.  They never look at the drugs.

Amazingly, the neurologist DID mention the drugs!

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JanCarol
2 hours ago, DMV64 said:

Amazingly, the neurologist DID mention the drugs!

 

Oh!  Tell me more!  Did he put his finger on the Geodon?  Did you tell him you were planning to taper it off in the new year?  

Did he put his finger on anything else - like interactions?  antihistamine?  Omeprazole?  

What are his plans for treatment?

What tests can be done to verify that this is Parkinson's and not TD?  Or - do they put all "Parkinson like symptoms" in the Parkinsons basket?

Inquiring minds. . . .

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JanCarol

Hey D - 

 

I was revising my tai chi brochure for 2020....in it I give all kinds of benefits of tai chi, compiling a bunch of research that I did a few years back, but that I probably need to keep on top of (I'm still looking for studio, I'm just not very good at advertising!)

 

Anyhow, here's one benefit which stood out for you:

Quote

The American National Institute of Health reports:
 

Tai chi is a centuries-old, mind and body practice. It involves certain postures and gentle movements with mental focus, breathing, and relaxation. The movements can be adapted or practiced while walking, standing, or sitting. Several clinical trials have evaluated the effects of tai chi in people with various health conditions. Here are five things to know about tai chi for health.
 

Research findings suggest that practicing tai chi may improve balance and stability in older people and reduce the risk of falls. There is also some evidence that tai chi may improve balance impairments in people with mid-to-moderate Parkinson’s disease.
 

There is some evidence to suggest that practicing tai chi may help people manage chronic pain associated with knee osteoarthritis and help people with fibromyalgia sleep better and cope with pain, fatigue, and depression.

 

Although tai chi has not been shown to have an effect on the disease activity of rheumatoid arthritis (e.g., tender and swollen joints, activities of daily living), there is some evidence that tai chi may improve lower extremity (ankle) range of motion in people with rheumatoid arthritis.

 

Tai chi may promote quality of life and mood in people with heart failure and cancer. Tai chi also may offer psychological benefits, such as reducing anxiety.


IIRC you are in Philly area?

https://healingphilly.com/tai-chi/

Here is my first Master, now Grandmaster (it is a martial art, so more techical):  http://williamccchen.com/teachers.htm#pa  (only one form, but it takes a lifetime to learn)

 

And here is my current instructor, Dr. Lam, who also has Online Instruction programs...  https://www.onlinetaichilessons.com/
 

His version of Tai Chi is "Tai Chi for Health" so there are a number of different forms with different focuses.  His forms are easy to learn, and serve good purpose.  If you can only find Tai Chi for Arthritis or Tai Chi for DIabetes or (insert form here - he has at least 2 dozen) - don't worry - all of the forms are good Tai Chi.

Here are his instructors in PA (I don't know what towns are near where):  https://taichiforhealthinstitute.org/instructors/?country_id=233&region=PA&cityOrSub=&fn=Find

Like you need to learn something new, right?  But it is good for cog-fog, as it forces you to concentrate on your body - probably more so than Yoga.  In Yoga, you can just do what the instructor is doing, but in Tai Chi you will be learning a sequence, and trying to put it together with flow.  It really does improve the brain in so many ways.

Anyhow, I'll get off my sales pitch, and let you think about it.  I just happened across the Parkinson's reference on a day I was talking to you about it....

I hope you see the Sun today!

 

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DMV64
11 hours ago, JanCarol said:

!  Did he put his finger

He did say it was most likely the Geoden and to get off it. He also  said symptom might take a year to abate. And that it could get worse or stay the same but probably hold until I am off. 
Other doc,, shrink,  helping me taper said while cogentin could be helping it could also be hurting as it is an snticholerigenic and they tend to make parkinsons like symptoms worse.

I don’t know how they separate the diagnosis from regular Parkinson’s disease. But they both gave me this kind of diagnostic light test where I had to do certain things and also answer certain questions on a kind of test. So both doctors did agree on the same diagnosis. And they both said if it gets worse and I should contact them. The neurologist said otherwise we check in in a couple of months

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DMV64

Also I thought I could switch out the hydroxyzine for something that is not an anti-collagenic like Zyrtec  But I tried it last night and I felt kind of weirdly jittery and I’m wondering if I have to taper Hydroxyzine or if I can just switch antihistamines

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DMV64

Or maybe I could just take half of the hydroxyzine. I take 100 mg I could try just dropping to 50. That’s if it’s not something that I’m going to have to taper in general. Anyway if you have any suggestions let me know.

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DMV64
On 12/18/2019 at 12:16 AM, JanCarol said:

IIRC you are in Philly area?

Yes! iI missed all this part somehow. Sounds promising. I am getting a random slight stutter, which I assume is part of this.  : (

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JanCarol
8 minutes ago, DMV64 said:

I am getting a random slight stutter, which I assume is part of this.  : (

 

This could be withdrawal.  It could be the Parkinsonian stuff, it could be the cognitive thing.  And it can get better.  It may be very temporary, or it may be something you need to work through.

Sometimes stutter is about confidence, being afraid to speak.  Louise Hay mentions "unexpressed sorrow" or feelings which are held in, unable to cry.

I hope you have been enjoying your family over the holiday!

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DMV64
15 hours ago, JanCarol said:

Parkinsonian

It does feel to me that it’s more like the Parkinson’s. It’s not really a stutter I guess it’s more of a stammer. It’s almost like I just can’t quite get the word out. I hope it goes away

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DMV64
15 hours ago, JanCarol said:

unexpressed

I have to think about this. I don’t feel like that’s happening but I guess I’ll just sit with it and see how it feels

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JanCarol
7 hours ago, DMV64 said:

I don’t feel like that’s happening

 

Just a suggestion, or food for thought.  
 

I hope it's another transient thing that will heal as you do.  I'm sorry this takes so long, but that's one of the things they never tell us when they write the scripts.

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DMV64
24 minutes ago, JanCarol said:

transient

I really hope so. The stuttering thing is weird it happened to me in class tonight but only once at least

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JanCarol

Hey D - 

 

I was talking to a tai chi teacher friend of mine, who posted a Scientific American article to Facebook:

https://blogs.scientificamerican.com/observations/reclaiming-control-in-the-face-of-parkinsons/

 

I hope this helps!

And - I hope you see the sun today!  (I just did sunwalk - cloudy - swooped by a crow who doesn't like me - but - yes, sunwalk!)

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DMV64

Hello! I am about to begin my Geoden taper. I am on 18mg in split doses. I am going from 18 to 16 mg. So excited!!

@jancarol @manymoretodaysHello! I am about to begin my Geoden taper. I am on 18mg in split doses. I am going from 18 to 16 mg. So excited!!

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Rosetta

Hi DMV, Thinking if you.  So happy to hear you are ready to begin a new taper!!! 💖Rosetta 

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DMV64

@JanCarol @manymoretodays I think I am having some symptoms from the Geoden drop...like Tardive Dyskinesia. I thought it was the Parkinsons Syndrome at first but this is different. This is day 8 of the drop, I feel like peeling my skin off. Like I am electrified from the inside. I have not had this before and am not sure what to do  :   (

Any advice?

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Rosetta

Ohh, can you take a hot bath or a cold shower?  I’ve never tried the cold shower, but other people say it helps.  I use the hot bath, and I keep refilling it with hot water.  I also have a shoulder wrap that I heat in the microwave.  That helps.  Normally, I would recommend magnesium, but I’m not sure it’s a good idea to add anything right now.  You may need to avoid stimulation as much as possible — low lights, soft sounds, avoid screens except TV.  I’m sorry you are feeling bad, DMV.  

-Rosetta

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JanCarol

Hey D - 

 

There are bound to be some adjustments as you come down off of Geodon.  You won't know TD / Parkinsons etc until you have been totally off of it for about 2 years.  I know, I know, that's tediously slow.

Carl Sagan discussed the danger of drugs in - the ones which are fast acting, you can feel them, and they work right away - as the safest drugs.  Like aspirin.  And (his argument, not mine) cannabis.  He thought that other drugs which had a delay in "kicking in" were far more dangerous.

Of course, in his time, the drugs like psych drugs - which take 3 weeks to "kick in" - were not as prevalent.

So I apologize for the length of the game.  You thought, years ago, when you signed up for this, that you were getting into a short term game, that you'd be out of it in a few months, or years, at most.  What you didn't know (and what doctors apparently still don't know) is that - it's a longer game than the one you signed up for.

Please be patient with yourself.  Maybe slow your taper if the symptoms are concerning.  Your drop was slightly higher than 10%  (11%,  tiny difference).  If your compounding chemist insists on going in full mg adjustments, that may be problematic, as you will quickly reach a point where a 1 mg drop is too much.

It's been a couple of weeks since you posted that. . . has it settled somewhat?

I hope you (unlike the groundhog) see the sun today!

ps - good advice about the hot and cold showers - still doing the Wim Hof?   He loves the cold ones!

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DMV64
7 hours ago, JanCarol said:

cold

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

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JanCarol
45 minutes ago, DMV64 said:

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.

 

That is such a relief!  I know how cranky I get with a UTI - to have a long term UTI would be really challenging.


Good to hear from you!

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DMV64

@JanCarol @manymoretodays  Hey friends I need some help. I’m doing this DNA protocol that has to do with my bladder embedded infections. It’s going well but we’re on level two. And it shows one of the bacteria which I’ve had before and I know — mycoplasma is the biggest bacterial load. The other ones are small. It also shows that levoFloxin and generally the quinolone family would knock four of these out at once. There are others that would knock two out.I seem to remember taking this flox family before and it having really bad effects and people here saying I got floxed so let me know what you think. I can always go with the other option which is tetracycline and doxycycline or the Macrolide family

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JanCarol

Hey D - 

 

When in doubt, avoid the flox. 

I had a skin infection - and doctor started writing a flox script - I said, "no thank you."  I've never been floxed or suspected of being floxed, but I have enough problems without adding one, or even adding the risk of one.

It was as easy as that.

You might have to take more of the "less effective" antibiotics.  It didn't occur to me that they would use DNA testing to go for the big gun drugs - but I do have that concern with psych drug DNA testing - that they do the testing so they can recommend drugs - "personalised medicine."  Yet another way the pharmaceutical companies won't be going out of business anytime soon.

Take care, and I hope you see the sun today!

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DMV64

Yes I’m going to tell them that. I see her today. I am planning on taking one of the less affective antibiotics because I know I’m not gonna be able to handle the Floxin. I remember I had it for something months ago and it did not work out well

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