Beth's Keeping Track Post

BeyondtheRainbow · Jul 07, 2021 at 06:29 PM

Isn't Bizi on vacation in Illinois or Indiana? I thought she was going to be gone a couple weeks.

*Beth* · Jul 07, 2021 at 07:38 PM

Quote:

Originally Posted by BeyondtheRainbow

Isn't Bizi on vacation in Illinois or Indiana? I thought she was going to be gone a couple weeks.

I think she is.

*Beth* · Aug 05, 2021 at 07:36 PM

Dr. W gone.

I'm pretty stable. Slight depression that nags at me. A bit of anxiety. Overall, meds doing well.

A.M.
Wellbutrin 75mg.
Klonopin 1mg.
Amantadine 100mg.

(tbc)

bizi · Aug 05, 2021 at 10:28 PM

hi beth I don't understand your saying that DR.W gone.
tell me what that means.
yes I went to indiana for 10 days to visit family.

We flew and rented a car which was expensive. The car rental cost more than our airfare.
bizi

*Beth* · Aug 06, 2021 at 01:47 PM

Quote:

Originally Posted by bizi

hi beth I don't understand your saying that DR.W gone.
tell me what that means.
yes I went to indiana for 10 days to visit family.

We flew and rented a car which was expensive. The car rental cost more than our airfare.
bizi

Car rental is absurdly expensive.

My pdoc left her practice at the clinic where I'm a patient. No notice, no closure. I saw her almost every week and now she's left her job.

*Beth* · Aug 06, 2021 at 01:53 PM

Quote:

Originally Posted by BethRags

Dr. W gone.

I'm pretty stable. Slight depression that nags at me. A bit of anxiety. Overall, meds doing well.

A.M.
Wellbutrin 75mg.
Klonopin 1mg.
Amantadine 100mg.
Trilafon (perphenazine) 8mg.
Metformin 500mg.

P.M.
Trilafon 12mg.
Pristiq 75mg.
Amantadine 100mg.
Metformin 500mg.
Amlodipine 10mg.
Lamictal 150mg.
Klonopin 1mg./.5mg. every other night

bizi · Aug 06, 2021 at 06:11 PM

I am sorry no closure.
((((((HUGS))))))
bizi

*Beth* · Aug 06, 2021 at 06:40 PM

Quote:

Originally Posted by bizi

I am sorry no closure.
((((((HUGS))))))
bizi

Thank you, bizi. Yep, I saw her almost every week for over 3 years. She left her job at the clinic on Wednesday. Word was she had a major conflict with higher-ups. I thought she and I had a nice bond...I'm hoping she'll at least send a form letter

bizi · Aug 06, 2021 at 09:20 PM

That is a long time. maybe you could get her mailing address. Or ask if they could mail it so no hippa violations that way.
I don't know, just brain storming.
((((HUGS)))))
bizi

*Beth* · Aug 07, 2021 at 02:22 PM

Quote:

Originally Posted by bizi

That is a long time. maybe you could get her mailing address. Or ask if they could mail it so no hippa violations that way.
I don't know, just brain storming.
((((HUGS)))))
bizi

That is a really good idea! Thanks!

*Beth* · Sep 25, 2021 at 07:00 PM

I haven't updated this thread in too long.

My tremor is absolutely out of control. It actually keeps me from falling asleep because I'm shaking so badly. I saw the neurologist; she prescribed propanolol. I'm at 160mg, which I cannot tolerate because my BP is so low, as is my heart rate. Walking a short distance is very difficult. I have to decrease it to 120mg.

At the same time I am decreasing the perphenazine, due to the tremoring. I have dropped Pristiq to 50mg. and the icy new pdoc raised Wellbutrin to 450mg.

Several changes at once. Not my choice, but no other way around it, due to the tremoring. I don't want to develop TD. The tremoring is quite literally unbearable.

Mood wise - mostly depressed and anxious, which the tremor contributes to (shake and you feel anxious). I've reached the end of my rope, finally, with covid. The isolation is damning. I can barely stand it anymore- but what to do?

I am wondering if the very small, verrry slow Klonopin taper is actually contributing to the anxiety. How to know, except to go back to the original dose, see how I feel.

Please no criticisms. Please understand that this tremor is severe, and potentially dangerous as far as TD.

BeyondtheRainbow · Sep 25, 2021 at 09:35 PM

this is probably stupid but have you been on cogentin? Did they discuss that new TD med that just came out? (I only know about it from tv.....not the greatest source I admit). I had a patient given haldol for TD that manifested as tremors. I don't know if it worked but he did improve at least somewhat. I would have thought (and at the time did) that this was a weird solution but like I said he did improve.

I'm sorry you are going through this. I've had EPS so many times that we skipped trying a typical AP before going to clozapine. We briefly discussed trilafon and then just decided it wasn't worth it to waste time trying it and a few weeks in having to stop and then move to clozapine.

Victoria'smom · Sep 25, 2021 at 10:42 PM

Beth I wish you felt better and had no tremors

buddha1too · Sep 26, 2021 at 12:00 AM

I'm so sorry you're feeling so depressed, anxious, and generally crappy. Mine might be a minority opinion, but it might be worth trying to increase your Klonopin intake. Please take care of yourself, Beth.

*Beth* · Sep 26, 2021 at 02:15 PM

Quote:

Originally Posted by BeyondtheRainbow

this is probably stupid but have you been on cogentin? Did they discuss that new TD med that just came out? (I only know about it from tv.....not the greatest source I admit). I had a patient given haldol for TD that manifested as tremors. I don't know if it worked but he did improve at least somewhat. I would have thought (and at the time did) that this was a weird solution but like I said he did improve.

I'm sorry you are going through this. I've had EPS so many times that we skipped trying a typical AP before going to clozapine. We briefly discussed trilafon and then just decided it wasn't worth it to waste time trying it and a few weeks in having to stop and then move to clozapine.

No, it's not stupid, Rainbow. Yes, I've been on Cogentin. It didn't help the tremor. I feel scared at this point...I don't want this thing all of my life.

I've seen the commercial for the TD med, too, and wondered about it. Then I read all the side effects and while I'm usually stoic when it comes to accepting side effects, the possible ones from that TD med sound downright creepy.

Thanks Rainbow

*Beth* · Sep 26, 2021 at 02:17 PM

Quote:

Originally Posted by buddha1too

I'm so sorry you're feeling so depressed, anxious, and generally crappy. Mine might be a minority opinion, but it might be worth trying to increase your Klonopin intake. Please take care of yourself, Beth.

Thank you, honey. So much Know what? I'm thinking about the K-pin, too. I'm wondering if this whole mess is due to my lowered dose, even though it's only a tiny bit down.

*Beth* · Sep 26, 2021 at 02:17 PM

Quote:

Originally Posted by Miguel'smom

Beth I wish you felt better and had no tremors

Thank you, Mm. You are so sweet

BeyondtheRainbow · Sep 26, 2021 at 11:49 PM

Quote:

Originally Posted by BethRags

No, it's not stupid, Rainbow. Yes, I've been on Cogentin. It didn't help the tremor. I feel scared at this point...I don't want this thing all of my life.

I've seen the commercial for the TD med, too, and wondered about it. Then I read all the side effects and while I'm usually stoic when it comes to accepting side effects, the possible ones from that TD med sound downright creepy.

Thanks Rainbow

Yeah, the TD med looks strong. It's too bad they can't come out with meds that work gently. I just was diagnosed with bladder spasms and an overactive bladder and am on this med that has such annoying side effects 80% of people stop taking the category of meds within one year. I guess they decide to suffer in silence. For me I am ok with the side effects compared to psych meds but it's making me so sleepy. Not at night obviously (fel asleep and woke up...ugh) but I have a very hard time waking before noon and many days if I can take a nap I do.. I hate it.

I hope you get answers soon.

*Beth* · Sep 27, 2021 at 12:43 PM

Quote:

Originally Posted by BeyondtheRainbow

Yeah, the TD med looks strong. It's too bad they can't come out with meds that work gently. I just was diagnosed with bladder spasms and an overactive bladder and am on this med that has such annoying side effects 80% of people stop taking the category of meds within one year. I guess they decide to suffer in silence. For me I am ok with the side effects compared to psych meds but it's making me so sleepy. Not at night obviously (fel asleep and woke up...ugh) but I have a very hard time waking before noon and many days if I can take a nap I do.. I hate it.

I hope you get answers soon.

The perphenazine gives me an overactive bladder - then makes it difficult to pee. *sigh* I'm so fed up with meds that give all sorts of side effects, but don't work well.

Anyway, I'm really sorry you have to suffer with the bladder issue. It's very difficult.

*Beth* · Sep 29, 2021 at 02:16 PM

Yet again I have given up on the Klonopin taper. The whole tapering thing was my idea. Although my former pdoc was supportive of my choice, she wasn't in any rush to titrate down. Klonopin works for me and torturing myself to quit it is just not the answer.

The new pdoc told me to stop Cogentin, I have no idea why. Since the proponalol isn't helping my tremor I've gone back to cogentin. 1mg./day. It's already helped the tremor. That pdoc is such a loser, I hope I'm not stuck with her for a very long time (a new in-person pdoc has been hired by the clinic and is starting to make appointments).

Anyway, back on the Cogentin and a lessened tremor feels like such a relief.

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BeyondtheRainbow Wise Elder Member Since Apr 2015 Location: US Posts: 9,230 (SuperPoster!) 9 9,385 hugs given	Jul 07, 2021 at 06:29 PM #381 Isn't Bizi on vacation in Illinois or Indiana? I thought she was going to be gone a couple weeks. __________________ Bipolar 1, PTSD, GAD, OCD. Clozapine 250 mg, Emsam 12 mg/day patch, topamax 25 mg, ,Gabapentin 1700 mg & 100-2 PRN,. 1.5 mg clonazepam., 50 mg Seroquel
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Beth catches the flowers Member Since Jul 2019 Location: Downtown Vibes, California Posts: 15,701 (SuperPoster!) 4 23.7k hugs given	Aug 05, 2021 at 07:36 PM #383 Dr. W gone. I'm pretty stable. Slight depression that nags at me. A bit of anxiety. Overall, meds doing well. A.M. Wellbutrin 75mg. Klonopin 1mg. Amantadine 100mg. (tbc) __________________
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bizi Bizi is bizi Member Since Nov 2005 Location: cajun country Posts: 10,851 18 43.8k hugs given	Aug 06, 2021 at 06:11 PM #387 I am sorry no closure. ((((((HUGS)))))) bizi __________________ 150mg of lamictal 2x a day haldol 5mg 2x a day 1mg of cogentin 2x a day klonipin , 1mg at night, 4-5 peri-colace for chronic constipation multi vit,, vit c, at noon, tumeric, caffeine at noon PRN Remeron 15mg at night, zyprexa10mg under tongue, requip2mg.
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Victoria'smom Legendary Member Since Apr 2012 Location: Earth Posts: 14,905 (SuperPoster!) 12 5,439 hugs given	Sep 25, 2021 at 10:42 PM #393 Beth I wish you felt better and had no tremors __________________ Dx: Me- SzA Husband- Bipolar 1 Daughter- mood disorder+ Comfortable broken and happy "So I don't know why I'm tongue tied At the wrong time when I need this."- P!nk My blog
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buddha1too Veteran Member Member Since Sep 2011 Posts: 735 12 2,547 hugs given	Sep 26, 2021 at 12:00 AM #394 I'm so sorry you're feeling so depressed, anxious, and generally crappy. Mine might be a minority opinion, but it might be worth trying to increase your Klonopin intake. Please take care of yourself, Beth.
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