SnowQueen: Relapses

[SnowQueen]

It seems no matter what I do, follow the psychiatrists order exactly, I keep relapsing into psychosis & they accuse me of lying. 
 

They do not trust me, so how do I trust them. The relationship with the medical community for me is so adversarial.

 

I do not know what to do. Nothing is working & i am withdrawing from society further & further.

[Sassenach]

Hello   SnowQueen     and welcome to SA.

 

This site is run entirely by volunteer Administrators and Moderators, all have been through or going through withdrawal.

There are no commercial interests or influences  involved .

 

I am sorry you are having such a rough time but you are now in the right place.

 

The site is currently extremely busy so please ensure you answer any requests from staff fully.

 

Your intro gives us very little to work with.

 

What is your diagnosed condition?

Can you give a timeline for your medical history?

What drugs have you been prescribed and when?

What are your current symptoms?

 

When we recieve this info we can try to help.

 

Sassenach

[SnowQueen]

I wrote a long reply... not sure if it went or was lost. 

[SnowQueen]

Urg I feel like my detailed reply is lost somewhere... ill try Again later on. 

[Sassenach]

Copied from PM sent to me by SnowQueen.

 

 

 

 

I am having some “learning” challenges on how to use this forum.

 

March 13, 2014 - I was taken to adult mental health at the Thunder Bay Regional Health Sciences Centre (hospital) for a manic psychosis where I did hallucinate & black out. 
 

A ct scan was done while I was unconscious & a posterior fossa intercranial menigioma was discovered near my vestibliochochlear (hearing) nerve & my facial nerve.

 

Once I regained consciousness a psychiatrist saw me to a short moment (like 3minutes) & diagnosed me as bipolar and started a medication treatment plan of lithium.

 

After about 48 hours on the lithium in hospital, my instincts said to me this was the wrong treatment.

 

I went non-compliant and refused to take any more medications. (at this point  there was barely a mention made of the meningioma, the psychiatrist said it had nothing to do with the incident or my condition).

 

I remained in hospital for 2? Weeks resisting medication and negotiated myself to be released. The psychiatrist said I was a very good negotiator but if I ever had another admission to hospital I would have to take the medication.

 

I went back to my life (which was full of challenges). Within a few weeks I had a follow up with the neurosurgon about the meningioma. We went over the treatment options. Meningioma’s are generally slow growing and benign.. although something to be very aware of. I decided to take a wait a bit approach before jumping into gamma knife radiation or a craniotomy.

 

I proceeded with my life, I was a newly trained Registered Massage Therapy Practice. I continued practicing, and building my client base. I was focused on health care for myself & the public. I continued with my recreational activities, jogging & playing volleyball. I was building a new network of female friendships, I was optimistic & energetic despite the occurrence of the psychosis & the meningioma.
 

15 months went by where things were going, on average, pretty well. 
 

Then a stressor hit me. I was involved in a tumultuous relationship. My companion “boyfriend” gaslighted me, gave me the silent treatment for a week & then dumped me for no reason I could make sense of. I told myself I was going to be strong, forget about him, and persevere. Well within a few days I slipped into another psychosis.
 

I blacked out & was taken to Adult Mental Health in the hospital. They put me on Envega (paliperidone). I also requested to have the craniotomy. I spent about 3 weeks in hospital to see how the Envega worked. I started to function fairly quickly (as i did the first time). The released me. Unfortunately, I no longer had a home to go to since I was living in a basement apartment in an elderly ladies home. My episode scared her and  she Illegally changed the locks on me. I had no capacity to fight her so I complacently left & couch surfed at a friends. Another week or 2 went by and my mood plummeted. It was beyond just feeling bad about my situation. I went numb, but beyond numb... no friend, no music, no peaceful image, nothing could take me mind off this inexplicable feeling of despair. If i wasn’t hiding in the fetal position under a blanket, I was feeling extreme jitters. I was not able to feel comfortable in my own skin. Every minute, every second felt like an eternity and all I wanted was to reach the finish line, death. My mind started racing with ideations on how to reach death. This went on for weeks. 
 

I had an appointment with my psychiatrist. I remember getting to the appointment was a challenging feat, being in the waiting room was an eternity of discomfort. I had to sit then stand then sit, no position was tolerable. I got into the meeting. I did my best to explain how i was feeling. I said I didn't want to live anymore. Her response, well we will keep you on the envega so you can have the surgery. Then she said I will come see you post op.  
 

I had the surgery. As soon as my senses came to, all the same feeling of restlessness, nihilism & death were still there as strong or stronger than ever. I expressed this to the neurosurgeon, I felt like it wasn’t his department to care about my “feelings” and since the imaging made the surgery look like a success, it wasn’t his problem. The psychiatrist never came to see me.

 

I was sent home. I went to my sisters. Within a couple week of non stop suicidal thoughts infiltrating my psyche, I make a week attempt at suicide & I swallowed a bottle of Tylenol with dome alcohol. I ended up vomiting & asked my sister to take me to the hospital.

 

A new psychiatrist was assigned to the ward and she took me off Envega (which i can say i have never felt that way since) They put me on a few combination of Wellbutrin, Lamictal, lithium which resulted in some severe reactions.  I had an extreme subcutaneous skin reaction where I turned a blochy purple all over my body. I was rushed to medical and put on iv to flush my system. (I think it was wellbutrin that did that)

 

They then left me on Lithium & limictal (i think) after several week they figured i was ok to go “home”. Although my skin was peeling & shedding off me like a reptile & i was have a watery discharge flowing out of me like a leaky tap. I did a follow ip blood test and went for a follow up appointment with the psychiatrist. She looked at my bloodwork, gave it to her resident, ran off and i was rushed to emergency. My blood platelets had dropped to 35 when the lowest of normal is 150. Im emerge the prodded every orifice and them took me off the limicatal.

 

I was then on only lithium. For the next 4 months, my peeling skin condition cleared up but my mood was pretty low. I was lethargic. I started putting on weight. I had never fluctuated outside of 130lbs-140lbs. Over a few months I was up to 160lbs. I had very little ambition but I did fight to keep working & walk at least (all my energy to jog was gone, i would try but a kilometre would be the mist I could do, before I could run 5 & 10km or more problem)

 

After a dismal Christmas (when same “challenging companion” reconnected with me & then dumped me) I had another psychosis. I was put on lithium & perphenazine. A couple months later I had another episode of psychosis. They kept me on the lithium & maybe upped the perphenazine (i cant exactly remember) I lasted 9 months till the next January had an episode of psychosis, then made it a year & had another episode.

 

A new psychiatrist was put on the ward. She was very dominating & pressured me to take abilify (btw not once has informed consent ever been implemented). First by pill for a few weeks and then by injection. I submitted. Well, it didnt take long & I could feel my system starting to feel like the Envega (minus the extreme suicidal thoughs) I couldn’t feel comfortable i any position, i couldn’t concentrate, i didnt know how to be in my skin (by this time I had lost my massage therapy practice at least a year).

 

Over a couple months I got the psychiatrist to agree to take me ofc Abilify. She put me back on Lithium 1050 (a higher dose than before which was 900) and then some Zolft for depression. I only had the Zofoft a couple weeks and she took me off just saying “well we know you respond to Zoloft if you get depressed”? I dint quite understand her remark

 

I made it about another 9 months and just before Halloween 2018 I had another spell, back in the hospital. 
 

The Psychiatrist wanted to put me back on abilify & i said no. They added perphenazine back into the lithium mix. 
 

Spring 2019 i decided to taper myself off the “meds”. It was actually going pretty well. I had a very light part time job to give me some connection with the community. I set up some other counselling supports. I took it pretty slow. I told myself just go to your job, eat, walk, take care of the basics, steer clear of drama... this will take time. Outside of work & walks I just watched movies. April, May, June went by & then I made a mistake and stepped into some family drama too soon. I got sent back to the hospital 3 times over the summer. Fortunately they haven’t changed my medication from the Lithium 1050. (Somewhere the dropped the perphenazine but i cNt exactly remember when)

 

Currently, i have tapered myself again to lithium 900. Over the summer I had started some micronutrients but I think I went a little too strong too fast with that program. I am starting the micronutrients much more slowly this time with the goal to prepare natural plant based foods.

 

i am in a pretty rough spot. I hope this site will help. 
 

I know I did the best and had the best quality of life on no drugs. I know my body will return to a proper balance when I get these foreign toxic chemicals out of me.

 

thanks for your support.

Edited November 19, 2019 by Sassenach
Sent by PM in error.

[SnowQueen]

One more important note to add... prior to the craniotomy i had weird pressure headaches. Post craniotomy I continue to have weird pressure headaches just in the lower portion of my head around the tumour site & my brainstem. Sometimes they are like a numbness & not to painful... and sometimes they feel like a tennis ball of burning acid is in my brain. The debilitating painful acid headaches started well after the craniotomy & are progressively getting worse & worse.

 

I feel a few of my psychosis episodes were my psyche breaking down from holding so much physical pain in my central nervous system. Some of my episodes were a combination of physical pain & extreme emotional distress from domestic psychological abuse.

[Sassenach]

Hi SnowQueen and thank you for your intro.

 

I know nothing about psychosis and will ask one of our senior mods to comment.

 

Sassenach

[Sassenach]

1 minute ago, SnowQueen said:

The debilitating painful acid headaches started well after the craniotomy & are progressively getting worse & worse.

Have you been back to the hospital and asked them to investigate this?

[SnowQueen]

I have told all my medical team and have had follow up CT & MRI and they have nothing to say.

[Altostrata]

Welcome, SnowQueen.

 

It seems you might have a complicated neurological problem that's beyond what we can address in peer support. My guess is your symptoms are still related to your brain condition and perhaps the surgery itself.

 

A diagnosis of psychosis in the presence of a brain tumor is nonsensical. It seems to me your treatment should be neurological rather than psychiatric. The psychiatrists don't know what to do but have been trying to treat your symptoms with various combinations of drugs for psychosis.

 

If I were you, I would formally challenge this diagnosis as inappropriate in the presences of a brain tumor and consequent surgery, get this documented in your record, and make it clear you need neurological treatment, not psychiatric treatment.

 

You also seem have been in a series of difficult living situations, which may trigger some symptoms..

3 hours ago, Sassenach said:

Spring 2019 i decided to taper myself off the “meds”. It was actually going pretty well. I had a very light part time job to give me some connection with the community. I set up some other counselling supports. I took it pretty slow. I told myself just go to your job, eat, walk, take care of the basics, steer clear of drama... this will take time. Outside of work & walks I just watched movies. April, May, June went by & then I made a mistake and stepped into some family drama too soon. I got sent back to the hospital 3 times over the summer.

 

As you're aware, your challenge is to take care of yourself so you're not involved in drama, it's too stressful for your vulnerable nervous system. You must also avoid drinking alcohol.

 

What symptoms do you associate with your lithium taper?

[SnowQueen]

I agree that the bipolar diagnosis separate from the tumour is questionable. I have brought it up many times with my psychiatrist & neurosurgeon.

 
I feel trapped in the system here. I do not really know how to go about second opinions but I am trying. I did talk with my nurse practitioner but all she had was other psychiatrists who i have already seem.

 

The lithium taper mainly i felt fatigue & a bit hypersensitive. My ability to cry returned and my emotions were heightened but it actually felt good to have my natural feelings back. In the 2-3 months I reduced I did have to scale back up to the 1050 for a blood test.

 

My psychiatrist is so dominating I have no strength to fight with her (plus fighting is a trigger) so i tried to fool the system even though it is hard on my physical system.

[Altostrata]

You don't need a second opinion about the psychiatry diagnosis. It's accepted that psychiatric diagnosis is inappropriate in the presence of a physical illness such as brain tumor. It's in all the guides, guidelines, textbooks, manuals, etc.

 

It might be good for you to stop tapering lithium right now until the fatigue etc. settles. See Tips for tapering off lithium

 

You don't need the psychiatrist for anything but your prescriptions so you can continue tapering. If I were you, I wouldn't ask her to solve any of your problems for you. You can tell her you're doing okay on your current prescription.

 

As you may have blackouts, etc. related to your neurological issues and have to go to the hospital, I would start working on that challenge to your psychiatric diagnosis as soon as you're able. You need to get that out of your medical record, or they'll keep sending you to the psychiatric ward.

 

Also, they have to accept that your blood level of lithium will keep dropping as you pursue a plan to minimize drug dosage. Does your health plan or medical center have a patient advocate or ombudsperson who might help you?

 

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