Humpty72: I’m not sure what I’m doing, needing help

[Humpty72]

I am having a lot of trouble understanding how to navigate this site. I really need advice and I don’t know how to post my info.

 

I was put on seroquel for 15 days a few weeks ago stopped CT having tardive dyskinesia and I need to know if I should reinstate and taper and how much I should take. I was trying to taper mirtazapine 7.5mg at 1/8of a pill over a month. I am in a lot of pain. I am also on 1mg xanax 3x a day. 

 

i don’t have a computer to post all the info u want. I did put it in my bio
 

 

Edited August 18, 2023 by manymoretodays
Forgot to add info, merged Intros, added to title, tags

[Humpty72]

I was put on mirtazapine 7.5 mg in Jan 2023 I’ve been having what I guess is tardive dyskinesia small spells. I was trying to taper off for the past 2 weeks by taking away an 1/8th of a pill. A week before that the dr put me on Seroquel and my TD ramped up. He stopped me CT after 15 days. Then put me on Lexapro for 4 days my face started dystonia. I stopped the med CT. They convinced me it was just anxiety, I took 1 pill and now my face won’t quit. Should I reinstate something. I’m so confused.

[Humpty72]

I had akathisia last year after being put on a ton of different meds no tapering. I can remember Elavil, Secuado, Pristiq. I don’t remember the rest. I was given Ativan and it helped. Then I had to have the dose upped. Then I was put on several benzos. None worked. I was put on Seroquel26mg 2 1/2 weeks ago & the akathesia is worse than ever. I’ve also been trying to taper 7.5 mirtazapine. I don’t know what to do. I really need advice.

[Humpty72]

I have been on meds since I was 14. I’m 51 now. I was showing signs last year of what I think was akathisia & every dr just said I was nervous. My psych said it was the COVID vax. I had been on a med called Secuado and 1 day of restlessness. My dose was dropped low & I never had it again. I was tried back on it a few more times but it didn’t work. Never had any other signs of akathisia then all of a sudden I started to have it. I was put on med after med no taper. Then on benzos that have all pooped out. I’m on mirtazapine now trying 2 get off but the withdrawal is so painful I can’t stand it. 2 weeks ago Dr put me on seroquel 26mg. That started legs tingling & really bad akathesia. I stopped CT. Then I was given lexapro & now my face is twitching. I stopped it after 5 days. I don’t know if I should reinstate the seroquel & drop it slowly. I can’t seem to get anyone 2 reply 2 me. Im having trouble navigating the sight. I am also on Xanax. Not working

[Humpty72]

I forgot to mention most of these symptoms started when I was put on mirtazapine. They escalate when I try to reduce the dose. I tried to drop it by 12%. I have these episodes like seizures. I get auras. My eyes go back and forth my body locks up. I have agoraphobia & sounds really kill me. The dr wanted to add low dose trazodone which I’ve taken successfully since I was a teen before I stopped last year to help dampen the withdrawal symptoms of the mirtazapine. 

Edited August 18, 2023 by manymoretodays
merged all unapproved Intro posts together, mmt

[manymoretodays]

Hi Humpty, we've been really busy, and thanks for your patience.  What is the akathisia like?  Can you describe?

Please HOLD on further tapers right now.

If at all possible.....I know you are not yourself now......try to get your signature a bit clearer in perhaps a list form, with year, month, day to the left of the medication taken.  Name of the medication, and dates taken, dose if recalled.

 

Then list right here, in a reply, your present medications by name and dose, and when you take them each day......the time in o'clock

 

Any calming practices that help?  Check out the Symptoms and Self Care forum for ideas.

 

 

[Humpty72]

Levothyroxine 50mg 75mg alternate days 5am changed in June to this dose 

mirtazipine since Jan ‘22 7.5 mg 12am

1mg xanax 7am, 3pm, 11pm

baclofen 20mg 7am, 3pm, 10mg 11pm

propranolol 80 mg ER 8am,

prazosin 2mg 8am 12am

 

I think I’m doing that cortisol dump in the mornings. At exactly 5:17am I wake screaming if I sleep at all. I try everything breathing Tapping music u name it nothing works

 

My legs and crotch feel like they are tingling

my right foot and hand ball up in spasms my back arches up off the bed I sometimes can’t speak my eyes till back and forth and I get an aura a lot before it happens. Started last year but I’ve had funny spells throughout my life. Brief but now it’s every day. 
 

the new thing is I can’t sit still in the mornings. I become grumpy I can’t hold my hands still. I feel like I’m gonna jump out of my skin. My face will scrunch up. I can’t stand noise. I’ve become agoraphobic. I’ll scream. It stopped last year when I was given Ativan but then began again. Dose upped. It stopped again then I had a lot of bad stuff happen and it started again. Bad things keep happening and it just gets worse.

 

Like right now I can feel an episode coming on. It’s sometimes like deja vu or a funny feeling in my chest. I know I’m getting ready to start spasming. I’m fighting my hands wading up.

 

this all started with severe constipation. Still have it. Drs r no help. I have to take Dulcolax every few days. My potassium and magnesium are low & I can’t keep the supplements down. I can barely eat & I’ve lost 50lbs but they refuse to keep track of my weight & practically congratulate me b/c I was fat & I’ve lost. I’m so weak. So tired. So scared.

 

[Humpty72]

That should have said my eyes roll back and forth when I have these seizure like spells. I had to pay for my own blood tests cuz no one would test me. I have off the charts rf IGG and IGA but they said it didn’t matter. I’m so scared it’s almost impossible to get to drs and I can’t drive. 

[Humpty72]

I keep forgetting things. I tried to add more to my signature but it kept telling me I wasn’t allowed to. I also have chronic migraines and intracranial hypertension which was controlled for 20 yrs now I feel the mirtazapine is causing it to come back. I need to get off this med b/c it can cause me to go blind not to mention the headache pain. Currently I’m using a special pill cutter & for the past 2 days I’ve taken off as close to 1/16 as I can. 1/8 was too much. The pain was horrible. Today it is much better. I’m holding here.I also forgot to mention when these spells come on my flutes will also spasm and my legs get so weak it’s like I have to shuffle. Kinda reminds me of when my mother had Parkinsonism. We caught it got her off the meds and she was fine in days. But it’s like my legs are weak or I can’t get them to move forward. My feet twist up. It’s very hard to walk. I do know when I get too scared I tend to hyperventilate but I also have spells where I feel like I suddenly can’t hear & im gonna pass out. 

[Altostrata]

Hello, @Humpty72

 

This is your current daily drug schedule?

 

On 8/19/2023 at 7:43 AM, Humpty72 said:

Levothyroxine 50mg 75mg alternate days 5am changed in June to this dose 

mirtazipine since Jan ‘22 7.5 mg 12am

1mg xanax 7am, 3pm, 11pm

baclofen 20mg 7am, 3pm, 10mg 11pm

propranolol 80 mg ER 8am,

prazosin 2mg 8am 12am

 

When was the last time you had your thyroid treatment checked? It's important you know potential adverse effects of each of your drugs. See https://www.mayoclinic.org/drugs-supplements/levothyroxine-oral-route/side-effects/drg-20072133

 

You say you have tardive dyskinesia from earlier drugs? And now it's worse, is that correct?

 

On 8/18/2023 at 9:30 AM, Humpty72 said:

I forgot to mention most of these symptoms started when I was put on mirtazapine. They escalate when I try to reduce the dose. I tried to drop it by 12%.

 

Which of these symptoms started when you were put on mirtazapine? You started mirtazapine in January 2022? You were already taking Ativan then, correct? What other drugs were you taking in December-January 2022?

 

From your signature:

Quote

 

Jan 2022 Mirtazapine. 7.5 mg

4/22 Ativan .5mg 3xday  

12/22 Ativan 1mg 3x day  

May -July/23 series of benzos no tapers. left on 1mg xanax 3x day.

4/23 xanax 1mg 3xday, seroquel 25mg for 15 days CT off.

July/23 Lexapro 5mg took for 4 days CT

AUG 23 tapering mirtazapine 1/8 of a piece 2 weeks. Bad akathisia anxiety tardive dyskinesia 

Baclofen 20mg 3x day,

Prazosin 2mg 3x day

Levothyroxine 75/50mg

 

 

When did you start each of these drugs, and why?

Baclofen 20mg 3x day,

Prazosin 2mg 3x day

 

Please put ALL your current drugs in this Interactions Checker and post the report or a link to it in this topic.

[Humpty72]

I’m guessing it’s akathesia. The dr couldn’t tell me. It stopped when I started Ativan but came back when they tried me on 15 days of seroquel a few weeks ago. I stopped it. Then they tried Lexapro which made my face twitch so I just took 5x. It has not stopped. I’m on propranolol and it seemed to slow the akathisia down. Baclofen I’ve been on at least 10yrs for fibro, dystonia in my neck. Prazosin I’ve been on for about 2 years for BP but originally anxiety. I had been off benzos a while except a short course in early 2021 b/c of shingles. I was tapered off pretty fast. I was on it about 2 months. Then I was put on Ativan the middle of last year. Dry eyes eye pain headaches strange seizure like spells all started while on mirtazapine. All of this started with extreme constipation. It has gotten worse when I try to go off the mirtazapine no matter how slow I lower it. All of my drugs interact and lower my BP. I had my thyroid checked once and something was off so they slightly lowered the dose but when they checked it again it was fine. But they do the bare minimum check. Nothing thorough. They don’t care if I have symptoms. I did have terribly high rheumatoid factor IGG and IGA but she told me it didn’t matter. So she wouldn’t retest me.

I don’t know if I had akathesia before. I just know they put me on drug after drug. I can’t remember them all. This was the end of 2021. Never tapered. I felt like I was coming out of my skin and I couldn’t hold still. It wasn’t my legs it was my arms and I felt like my heart was going to come out of my chest. I’m sorry I can’t remember dates. My head hurts so badly. I’m now having bad dizziness and my HR is really low for me. I can’t figure out how to link the interactions checker onto here. Perhaps you could let me know. As I said almost everything interacts to lower my HR. I can’t understand why she kept me on Prazosin. I was in the office when she restarted propranolol to control my HR she said. It was 39. Then in a matter of minutes it was 148. The nurse just shrugged and walked out. My potassium and magnesium are low but I’ve been 2 sick at my stomach to take supplements. The drs have offered me no other option. I have explained I can’t eat but they just tell me to eat veggies in one breath and be careful and don’t eat them in another.

[manymoretodays]

Hi Humpty72,

10 hours ago, Humpty72 said:

I’m guessing it’s akathesia. The dr couldn’t tell me. It stopped when I started Ativan but came back when they tried me on 15 days of seroquel a few weeks ago. I stopped it. Then they tried Lexapro which made my face twitch so I just took 5x. It has not stopped. I’m on propranolol and it seemed to slow the akathisia down. Baclofen I’ve been on at least 10yrs for fibro, dystonia in my neck. Prazosin I’ve been on for about 2 years for BP but originally anxiety. I had been off benzos a while except a short course in early 2021 b/c of shingles. I was tapered off pretty fast. I was on it about 2 months. Then I was put on Ativan the middle of last year. Dry eyes eye pain headaches strange seizure like spells all started while on mirtazapine. All of this started with extreme constipation.

 

I'm not sure I follow......when did the extreme constipation start?  Was that over 10 years ago?

 

Why did they put you on the mirtazapine?

 

Were you able to get a complete interaction report done?  With all your drugs included.  To link the interactions report, you can copy the URL of it, and then paste it in a reply here.

 

Are you seeing one doctor or many?

What I might do, if I were in your shoes now.......is find one of your doctors to go to bat for you.  If possible your general practitioner or primary care doctor might be best.  Share with them the interactions report.  You might also ask for a pharmacy review of ALL your drugs.  And then ask them(and one has to be tactful with this, so as to not insult them) to do some reading and research on "de-prescribing" as well.  I'm finding more is being written in regards to the sometimes over-medication of the seniors and elderly too.  Often too many specialists who are not communicating with each other and sometimes no one doctor or nurse overseeing a human's care.

 

This might help:

How to talk to a doctor about tapering and withdrawal? What to expect

and ^ may help just getting decent on the ground care for you now.......around how to find a decent doctor when in a great deal of distress

 

I think that for sure some of your current symptoms are due to drugs and withdrawal but that there might also be something else going on that should be addressed medically.  I don't know for sure.  Yours is, however.......one of those cases that may be beyond peer support right now.

 

Do you have family that might help?

11 hours ago, Humpty72 said:

It has gotten worse when I try to go off the mirtazapine no matter how slow I lower it. All of my drugs interact and lower my BP. I had my thyroid checked once and something was off so they slightly lowered the dose but when they checked it again it was fine. But they do the bare minimum check. Nothing thorough. They don’t care if I have symptoms. I did have terribly high rheumatoid factor IGG and IGA but she told me it didn’t matter. So she wouldn’t retest me.

 

And I'm sorry that the doctor above isn't being kind or considerate.  Sounds like you could use a new doctor??!

 

Your case may be just too medically complex for us right now Humpty72.   Or just a little too complicated for peer support right now(peer support around just tapering and withdrawal).  And I'm sorry to say that as you sound very distressed right now.  We are an internet forum devoted mainly to tapering off psychoactive drugs and not a substitute for good medical care at all, which it sure sounds like you could use right now or have been in need of for some time.

 

If all gets worse with tapering mirtazapine, I think I would just stay put with the present dose.  While seeking additional medical care, which we cannot do here.

 

Oooh Humpty72,  and of course you are welcome back if and when you want support and help around just tapering a psychoactive.....when in a bit more stable place.  Rooting for you in the meantime.....it sounds so very hard right now.

 

Love, peace, healing, and growth,

mmt

 

 

[Altostrata]

21 hours ago, Humpty72 said:

It stopped when I started Ativan but came back when they tried me on 15 days of seroquel a few weeks ago.

 

If Ativan eliminated your symptoms, if I were you, I'd go back on Ativan.

 

21 hours ago, Humpty72 said:

I’m now having bad dizziness and my HR is really low for me. I can’t figure out how to link the interactions checker onto here. Perhaps you could let me know. As I said almost everything interacts to lower my HR. I can’t understand why she kept me on Prazosin. I was in the office when she restarted propranolol to control my HR she said. It was 39. Then in a matter of minutes it was 148.

 

You might be taking too many drugs to lower your blood pressure and getting a paradoxical reaction, which raises your blood pressure.

 

10 hours ago, manymoretodays said:

What I might do, if I were in your shoes now.......is find one of your doctors to go to bat for you.  If possible your general practitioner or primary care doctor might be best.  Share with them the interactions report.  You might also ask for a pharmacy review of ALL your drugs. 

 

Agree with @manymoretodays You need a good doctor.

 

I'm sorry to say your condition and drug regimen is otherwise too complex for peer support.

 

[Humpty72]

I’m guessing it’s akathesia. The dr couldn’t tell me. It stopped when I started Ativan but came back when they tried me on 15 days of seroquel a few weeks ago. I stopped it. Then they tried Lexapro which made my face twitch so I just took 5x. It has not stopped. I’m on propranolol and it seemed to slow the akathisia down. Baclofen I’ve been on at least 10yrs for fibro, dystonia in my neck. Prazosin I’ve been on for about 2 years for BP but originally anxiety. I had been off benzos a while except a short course in early 2021 b/c of shingles. I was tapered off pretty fast. I was on it about 2 months. Then I was put on Ativan the middle of last year. Dry eyes eye pain headaches strange seizure like spells all started while on mirtazapine. All of this started with extreme constipation. It has gotten worse when I try to go off the mirtazapine no matter how slow I lower it. All of my drugs interact and lower my BP. I had my thyroid checked once and something was off so they slightly lowered the dose but when they checked it again it was fine. But they do the bare minimum check. Nothing thorough. They don’t care if I have symptoms. I did have terribly high rheumatoid factor IGG and IGA but she told me it didn’t matter. So she wouldn’t retest me.

I don’t know if I had akathesia before. I just know they put me on drug after drug. I can’t remember them all. This was the end of 2021. Never tapered. I felt like I was coming out of my skin and I couldn’t hold still. It wasn’t my legs it was my arms and I felt like my heart was going to come out of my chest. I’m sorry I can’t remember dates. My head hurts so badly.

[Humpty72]

The constipation started out of the blue at the end of 2021. It has only gotten worse and now I can barely eat. I have let my drs know. None of them are concerned. I keep trying different doctors. No one helps. I told them I don’t think my stomach is absorbing my meds. The psychiatrist just said maybe and shrugge. I just don’t want permanent akathisia or facial dystonia. Thank u for trying. I see my neurologist today. Please keep me in your prayers. Have a good day.

[Altostrata]

11 hours ago, Humpty72 said:

It stopped when I started Ativan

 

Mirtazapine is anticholinergic, meaning it dries you out and can cause constipation.

 

You're taking a lot of drugs. Recommend you review adverse effects of each of your drugs and compare them to the effects you feel. You also need to get your thyroid treatment reviewed.

 

Talk to a good doctor about removing the drugs that are causing problems or that you don't need. Since you're taking a bunch of neuroactive drugs, all of them need to be tapered (except levothyroxine). 

 

I'm sorry, I don't think we can give you any further advice here, we're just peer counselors.