Aember: mysterious neurological illness

[Aember]

Hi, my name is Aember and I have had severe negative reactions to SSRIs after very fee doses. I have been sick since January 2020 with a mystery degenerative neurological condition that is affecting my ability to think and feel. I am experiencing progressive dementia and confusion. Here is my story: 

 

Have had mystery neurological illness since Jan 2020, started with delirium, a flu and then a gastrointestinal flu that woke me up with a pounding heart and nocturnal defecation for months and body temp above 99 -101F. Sleep became interrupted with very vivid dreams and bizarre hypnagogic states. Started hypersalivating. Vision became altered, blurry at distance, slightly photosensitive. Extreme fatigue and bed in early evening, sleeping in and off until noon. Increased red pinpoint angiomas developing all over my body. Gradually became anhedonic in March 2020, unable to laugh or cry. Confusion and anxiety increased. Was put on Seroquel 25 mg end of March 2020, immediately had some involuntary movement so stopped after 1 dose. Switched to Trazodone 2 days later and had an extreme Akathesia episode with involuntary movement, was up for 24 hours pacing and raging internally. The next week was put on Citalopram 10mg for 2 days, immediately got dyskinesia (pill rolling, teeth grinding, twitching, teeth licking, bunny nose) with compulsive behaviour, vision became blurrier and developed horizontal double vision halos, perception of time sped up, switched to 5mg Escitalopram for 1 day, started muscle twitching, became flushed, feverish could not sleep (serotonin syndome?), next day became psychotic and babbling, compulsive, bit myself, could not walk. Hospitalized April 2020, put on respiridone 0.125 upped to 0.25 for 2 weeks. Felt weird hot icy burning in chest and esophagus upon initiating, had issues swallowing, voice got raspier, experienced increased hunger, constant fatigue and sedation, dry skin some teeth grinding and muscle tension on and off, vision worsened further (my left eye is now -1 and blurry, was perfect in December 2019), increased constipation, little change in anxiety, increased social compulsiveness (speaking without thinking). Started lactating. Quit April 29 after tapering to 0.125 mg for 3 days. Since then, I had episodes of dyskinesia and teeth grinding, bunny nosing, cramping in hands and feet, but it's gradually lessening as my body adapts to being antipsychotic free. I am still in a confused state (feel like I am about to pass out, cannot focus) with abnormal sleep emotions (cannot feel happy, cannot work) and decreased intellect (issues with spelling, time perception, planning, focus and my degenerative neurological condition persists as well as the hypersalivation and weakness. I am in bed all day. 

[Aember]

I tried to introduce myself last night but I'm not sure why my post was not approved. I have experienced a yet-undiagnosed degenerative neurological condition since January, with anxiety as one of the symptoms, and was put on several SSRI antianxiety drugs briefly to which I immediately had terrible side effects. I was then put on low dose respiridone which I quit two weeks ago. Can I explain my condition and drug reactions here? Thank you so much

[Gridley]

Welcome to SA, Aember.  I'm sorry you're having these terrible symptoms.

 

We are not doctors and so cannot diagnose a neurological disease.  Have you consulted a neurologist?  If so, have they run tests?  What were the results?

 

In your post you say that your symptoms began in January, 2020.  Were you taking any psychiatric drugs when the symptoms began?  Or was your first psychiatric drug the Seroquel in March, 2020?

Some of what you're experiencing, at least from the point when you started taking psychiatric drugs, is likely due to adverse reactions to the various drugs you were put on.  An adverse reaction means that your system is too sensitive to tolerate these drugs and they are poison to you.  An immediate very severe negative reaction to a psychiatric drug is typical of an adverse reaction.  You will heal from this, but unfortunately we can't predict how long it will take.  

 

Please let us know whether you've had tests run and the results.

 

This is your Introduction topic, where you can ask questions and connect with other members.  We're glad you found your way here.

 

 

[Aember]

6 minutes ago, Gridley said:

Welcome to SA, Aember.  I'm sorry you're having these terrible symptoms.

 

We are not doctors and so cannot diagnose a neurological disease.  Have you consulted a neurologist?  If so, have they run tests?  What were the results?

 

In your post you say that your symptoms began in January, 2020.  Were you taking any psychiatric drugs when the symptoms began?  Or was your first psychiatric drug the Seroquel in March, 2020?

Some of what you're experiencing, at least from the point when you started taking psychiatric drugs, is likely due to adverse reactions to the various drugs you were put on.  An adverse reaction means that your system is too sensitive to tolerate these drugs and they are poison to you.  An immediate very severe negative reaction to a psychiatric drug is typical of an adverse reaction.  You will heal from this, but unfortunately we can't predict how long it will take.  

 

Please let us know whether you've had tests run and the results.

 

This is your Introduction topic, where you can ask questions and connect with other members.  We're glad you found your way here.

 

 

 

Hello. I was not taking any drugs at the beginning of January. My first psychiatric drug was Luvox briefly 21 years ago for a month (1999). Seroquel was the first recent drug. I speak to a neurologist Thursday over the phone bc of covid. I have had a CT scan and it was normal. Psychiatry insists it's all anxiety or somatic psychosis, but I keep degenerating further despite being off of meds and having been on a very low dose. My emotions, intellect, bizarre thoughts and confusion keep getting worse. I wish someone could randomly figure out what spread to my brain from the moment I got sick or if I have something like early onset Alzheimer's or Parkinsons or a parasite. 

[Shep]

On 5/12/2020 at 9:00 PM, Aember said:

Have had mystery neurological illness since Jan 2020, started with delirium, a flu and then a gastrointestinal flu that woke me up with a pounding heart and nocturnal defecation for months and body temp above 99 -101F.

 

Aember, were you on any type of medications prior to this illness? Did you take any medications for the flu or the gastrointestinal issues? Are you taking any medications now? 

 

As Gridley noted, your reactions to psych drugs were adverse reactions. It's clear your nervous system is very hyper-reactive now and may have been even prior to taking any psych drugs. Many people don't react well to these drugs. 

 

On 5/13/2020 at 1:03 PM, Aember said:

Psychiatry insists it's all anxiety or somatic psychosis, but I keep degenerating further despite being off of meds and having been on a very low dose.

 

While psychiatrists do go to medical school, psychiatry is not a legitimate branch of medicine. Since the mind is an abstraction that cannot be diseased, you'll be much better off with a neurologist. It's good you're already in contact with neurology, so there's really no need for a psychiatrist. I would continue to follow up with your neurologist and if this current one doesn't have an answer, perhaps seek a second opinion with another one. 

[Aember]

On 5/14/2020 at 6:29 AM, Shep said:

 

Aember, were you on any type of medications prior to this illness? Did you take any medications for the flu or the gastrointestinal issues? Are you taking any medications now? 

 

As Gridley noted, your reactions to psych drugs were adverse reactions. It's clear your nervous system is very hyper-reactive now and may have been even prior to taking any psych drugs. Many people don't react well to these drugs. 

 

 

While psychiatrists do go to medical school, psychiatry is not a legitimate branch of medicine. Since the mind is an abstraction that cannot be diseased, you'll be much better off with a neurologist. It's good you're already in contact with neurology, so there's really no need for a psychiatrist. I would continue to follow up with your neurologist and if this current one doesn't have an answer, perhaps seek a second opinion with another one. 

Hi there. No, I was on none and I took none. I did get vaccinated for pre-exposure rabies during (2 doses rabavert). The only thing I am taking now is fish oil, vitamin C/D, iron and sometimes Hops/passionflower tea.

 

I am having worse nausea, dystonia (muscle aches, cramping) and jerking movements the past few days as well as irritability and hot flashes and the past 2 nights I awoke to strange hallucinatory thoughts about dying on new meds. I tapered off very fast... 0.25, to 3 nights 0.0125 then I stopped completely. I tapered too fast, right? I was only on respiridone for 2 weeks. Could I be getting withdrawal psychosis? How do I treat that?

 

how do I know if the dystonia and nausea will abate? 

 

I have an MRI next week, as well as more bloodwork and an eventual EEG. Psychiatrist wants to put me on Mirtazapine. I presume I would fare poorly on that and that it will of course not fix my neurological issues. 

 

Thank you.

[Aember]

I am having intense nausea and harm anxiety right now, the worst since I quit respiridone cold turkey. what do i do?

[Shep]

On 5/15/2020 at 1:35 PM, Aember said:

I did get vaccinated for pre-exposure rabies during (2 doses rabavert).

 

Some of your symptoms may be from this vaccine. Please note the side effects listed here:

 

Rabavert Side Effects

 

On 5/15/2020 at 1:35 PM, Aember said:

The only thing I am taking now is fish oil, vitamin C/D, iron and sometimes Hops/passionflower tea.

 

You've had a number of adverse reactions even to low doses of psychiatric drugs, so I'd be very careful of hops/passionflower tea. This can affect GABA similar to the effects of a benzodiazepine. You may want to switch to a different type of tea, such as peppermint, ginger, or Rooibos tea, which are calming teas that are safer during withdrawal. 

 

Vitamin D can also be very stimulating to the nervous system. 

 

Vitamin D3 (cholecalciferol or calcitriol)

 

Instead of taking a supplement, you may want to take a daily walk of 15 - 30 minutes outside in the sun. If this is too much right now, simply sitting outside in the sun for a short time every day can be very helpful in getting vitamin D. 

 

On 5/15/2020 at 1:35 PM, Aember said:

I am having worse nausea, dystonia (muscle aches, cramping) and jerking movements the past few days as well as irritability and hot flashes and the past 2 nights I awoke to strange hallucinatory thoughts about dying on new meds. I tapered off very fast... 0.25, to 3 nights 0.0125 then I stopped completely. I tapered too fast, right? I was only on respiridone for 2 weeks. Could I be getting withdrawal psychosis? How do I treat that?

 

You weren't on these drugs long enough to become dependent. It really sounds like you're dealing with adverse reactions from the vaccine, which may have destabilized your nervous system. Adding in psych drugs likely only compounded the problem and traumatized your nervous system further. 

 

Try reducing and eliminating the passionflower tea and vitamin D and see if you feel better. Unfortunately, adverse reactions can take a long time to recover from, but by reducing any other element that may be taxing the nervous system, you may reduce some of the symptoms. 

 

Please let us know if this helps. 

[Aember]

5 minutes ago, Shep said:

 

Some of your symptoms may be from this vaccine. Please note the side effects listed here:

 

Rabavert Side Effects

 

 

You've had a number of adverse reactions even to low doses of psychiatric drugs, so I'd be very careful of hops/passionflower tea. This can affect GABA similar to the effects of a benzodiazepine. You may want to switch to a different type of tea, such as peppermint, ginger, or Rooibos tea, which are calming teas that are safer during withdrawal. 

 

Vitamin D can also be very stimulating to the nervous system. 

 

Vitamin D3 (cholecalciferol or calcitriol)

 

Instead of taking a supplement, you may want to take a daily walk of 15 - 30 minutes outside in the sun. If this is too much right now, simply sitting outside in the sun for a short time every day can be very helpful in getting vitamin D. 

 

 

You weren't on these drugs long enough to become dependent. It really sounds like you're dealing with adverse reactions from the vaccine, which may have destabilized your nervous system. Adding in psych drugs likely only compounded the problem and traumatized your nervous system further. 

 

Try reducing and eliminating the passionflower tea and vitamin D and see if you feel better. Unfortunately, adverse reactions can take a long time to recover from, but by reducing any other element that may be taxing the nervous system, you may reduce some of the symptoms. 

 

Please let us know if this helps. 

I had the Rabavert vaccine in February. Would it have caused the damage I am feeling now? I probably never should have gotten it. How do I recover from it psychiatrically? 

 

If my psychiatric symptoms persist, how do I cope?

[Shep]

15 minutes ago, Aember said:

I had the Rabavert vaccine in February. Would it have caused the damage I am feeling now?

 

On 5/12/2020 at 9:00 PM, Aember said:

Have had mystery neurological illness since Jan 2020, started with delirium, a flu and then a gastrointestinal flu that woke me up with a pounding heart and nocturnal defecation for months and body temp above 99 -101F.

 

Let's get a correct timeline.

 

Did you have these symptoms prior to the vaccine or after? 

[Aember]

2 minutes ago, Shep said:

 

 

Let's get a correct timeline.

 

Did you have these symptoms prior to the vaccine or after? 

I had symptoms in January prior to vaccine: decline in vision, hypersalivation, nighttime defecation, insomnia, received vaccine in early February, have steadily worsened since then, but most notable decline after starting psychiatric meds. 

 

I should probably not have gotten vaccinated while sick.

[Shep]

2 minutes ago, Aember said:

I had symptoms in January prior to vaccine: decline in vision, hypersalivation, nighttime defecation, insomnia, received vaccine in early February, have steadily worsened since then, but most notable decline after starting psychiatric meds. 

 

Thanks for this information. Please update your signature to reflect the date you had the vaccine. It's important to have a timeline, as something else prior to the vaccine seems to have happened that caused these symptoms. 

 

Your signature is here:

 

Account Settings - Create or Update Your Signature

 

Are you doing any follow up with a neurologist or other type of specialist to find the source of the initial symptoms? You may not feel well enough right now, but perhaps as you recover from the psychiatric drug exposure, you may wish to do so. At least now you're aware of how sensitive your nervous system is. 

 

Please let us know how you're doing over the coming days as you reduce and eliminate the passionflower tea and vitamin D. Perhaps this will give you some breathing room from some of the symptoms. 

[Aember]

4 hours ago, Shep said:

 

Thanks for this information. Please update your signature to reflect the date you had the vaccine. It's important to have a timeline, as something else prior to the vaccine seems to have happened that caused these symptoms. 

 

Your signature is here:

 

Account Settings - Create or Update Your Signature

 

Are you doing any follow up with a neurologist or other type of specialist to find the source of the initial symptoms? You may not feel well enough right now, but perhaps as you recover from the psychiatric drug exposure, you may wish to do so. At least now you're aware of how sensitive your nervous system is. 

 

Please let us know how you're doing over the coming days as you reduce and eliminate the passionflower tea and vitamin D. Perhaps this will give you some breathing room from some of the symptoms. 

Thank you for the tips.

 

I consulted with a neurologist Thursday and have an MRI Tuesday. An EEG is scheduled sometime unknown in the future (Canadian system). I also have new blood tests.

 

I really hope I am not permanently damaged or that in my haste worrying about rabies while sick that I made my neurological problems worse by getting vaccinated. Anything is possible. I know the meds certainly did not help, as I am having thoughts and impulses now that I never had before them. I had diarrhea this morning and, as usual, am in bed all day, out of it, feeling a constant hot flash and nausea.

 

I need to make it to Tuesday to get my MRI. I don't want to decline further psychiatrically bc that will hurt my testing given that they have labelled this anxiety and somatising.

[ChessieCat]

  

17 minutes ago, Aember said:

 

Recovery from Anhedonia? Advice?

 

Hi. I am experiencing anhedonia, secondary to an undiagnosed condition I developed following a months-long gastrointestinal illness that kept waking me up at night and produced interrupted sleep and hypnagogic hallucinations. Seeing as I reacted terribly to psych meds and I have not been treated, how do I overcome my innate anhedonia? My personality is not the same since my illness and I am unable to do more than read and weakly play brain games in bed, in an effort to stave off my equivalent cognitive decline. I have retained my vocabulary for the most part, but am often confused and experience happiness as anxiety. Even forcing a smile makes me feel pain/nausea. Any tips or analysis? Thank you. 

 

 

Hi Aember,

 

I've moved the above post to the existing SA discussion on this subject (link below).  We like to keep information in one place so that the information is easier for members to find.

 

There are many existing topics on SA.  Before creating a new topic please do a search to see if there is already a discussion topic.  You can use the site search or a search engine.  I have found that using a search engine and adding survivingantidepressants.org to the search term works well.  For example to find the anhedonia topic I searched for:  survivingantidepressants.org anhedonia

 

apathy-anhedonia-emotional-numbness-emotional-anesthesia

[HopefulDawn]

Hi there, it seems to me like all of this is due to adverse reactions. My personal belief  is that all the neurological symptoms are drug induced and some of them are similar to what happened to me straight after my adr, though i'm not a dr or anything so idk It is good your seeing a neurologist though. Have you stopped taking everything or are you still taking some?

[Aember]

14 hours ago, HopefulDawn said:

Hi there, it seems to me like all of this is due to adverse reactions. My personal belief  is that all the neurological symptoms are drug induced and some of them are similar to what happened to me straight after my adr, though i'm not a dr or anything so idk It is good your seeing a neurologist though. Have you stopped taking everything or are you still taking some?

I stopped taking everything. Sadly, I now cannot move my hands properly (left hand drops, right hand cramps) or walk properly (left side worse than right, right foot pain, back pain). I am nauseous, get muscle twitching and my eyesight is worse. It is something very rapidly degenerative. A prion disease? I am sad that I cannot get better. I will have more tests this week. 

[Repent]

Hi, 

 

Ive read you didnt take any meds prior Jan when the sympthoms started. But i ask anyway.. No antibiotics? And did you take any hormones, creams or birth control pills, plan-b maybe. Some even mimics effect of benzo you can have all kinda of reaction. 

[Amira]

On 5/13/2020 at 3:00 AM, Aember said:

Have had mystery neurological illness since Jan 2020, started with delirium, a flu and then a gastrointestinal flu that woke me up with a pounding heart and nocturnal defecation for months and body temp above 99 -101F. Sleep became interrupted with very vivid dreams and bizarre hypnagogic states. Started hypersalivating. Vision became altered, blurry at distance, slightly photosensitive. Extreme fatigue and bed in early evening, sleeping in and off until noon. Increased red pinpoint angiomas developing all over my body. Gradually became anhedonic in March 2020, unable to laugh or cry

Maybe the rabavert rabies vaccine caused these issues? Or you already had them before the vaccine? Did you take antibiotics/steriods/hormone treatment/ cortisone proir to this condition? some medications can cause nerurogical problems

@Aember

 

[Altostrata]

On 5/17/2020 at 6:41 AM, Aember said:

I had symptoms in January prior to vaccine: decline in vision, hypersalivation, nighttime defecation, insomnia, received vaccine in early February, have steadily worsened since then, but most notable decline after starting psychiatric meds. 

 

I should probably not have gotten vaccinated while sick.

 

This seems like a condition that started before all the adverse reactions to psychiatric drugs, which made it worse. Your condition does not sound like withdrawal syndrome.

 

I hope you found good neurological care.

[Aember]

Upon the advice of a neurologist treating my misdiagnosed neurological condition, I have rather rapidly tapered down to O.75 mg Olanzapine. My question is how long does seritonin supersensitivity and anticholinergic rebound last? Symptoms are spikes in temperature, nausea, non-epileptic seizures and confusion.

[Altostrata]

Hello, Aember, I moved your post here, it needs the context of your Intro topic.

 

You were taking 5mg olanzapine from April 14 to early August?

 

1 hour ago, Aember said:

Symptoms are spikes in temperature, nausea, non-epileptic seizures and confusion.

 

Rather than supersensitivity and cholinergic rebound, we probably would say you have withdrawal symptoms from your rapid taper. When did this particular batch of symptoms start?

 

What does "non-epileptic seizures" mean? Please describe this symptom.

[Aember]

no. 2.5 until july 1. took 5 for 4 weeks. Tapered rapidly unti now at 0.75. my neurological condition is not better, to make this worse. I have a CSF leak in my right sinus and get stabbing head pains and confusional spells from that. Non-epileptic seizures are seizures where I do not lose consciousness. I also have dystonia

[Aember]

I have tapered down to 0.61mg olanzapine from 5 mg/day. The issue is I wake up in the middle of the night in a half-dream state, drenched in sweat with nighttime defecation. Before falling asleep last night, I felt naturally tired before forcing myself to take the dose. I also had involuntary body jerks when I woke up, which I have had less and less of during the day as I have steadily tapered off. I don't want mw staying on the drug for another 3 weeks (I was tapering 0.02 mg/day or 0.01g/day, 25 days remaining) to further damage my nervous system. It is utterly scary and unpleasant staying on the drug with the sleep disturbances. What do I do? Thank you.

 

Edited September 3, 2020 by ChessieCat
resized font

[Aember]

I have been off of the olanzapine for 2.5 days and now am having terrible withdrawal. Do I reinstate at 0.61? I now have headache, confusion, nausea, muscle pain, more body jerks. I wanted to smooth out my taper but I made it worse. Please help.

[Aember]

To clarify, I have seen improvements in my neurological condition until now: no seizures in 10 days, dystonia improved, slurred speech/aphasia improved. Now I am having hellacious withdrawal from jumping off of 0.61mg 2.5 days ago. I'm scared. Please help.

[Altostrata]

On 8/22/2020 at 4:29 PM, Aember said:

no. 2.5 until july 1. took 5 for 4 weeks. Tapered rapidly unti now at 0.75. my neurological condition is not better, to make this worse. I have a CSF leak in my right sinus and get stabbing head pains and confusional spells from that. Non-epileptic seizures are seizures where I do not lose consciousness. I also have dystonia

 

4 hours ago, Aember said:

To clarify, I have seen improvements in my neurological condition until now: no seizures in 10 days, dystonia improved, slurred speech/aphasia improved. Now I am having hellacious withdrawal from jumping off of 0.61mg 2.5 days ago. I'm scared. Please help.

 

Hello Aember. If you were seeing stability, I would have made very careful moves going off the drug so as not to disturb it. Why did you jump off at 0.61mg?

 

If I were you, I'd reinstate 0.25mg, hoping that will be enough to stop withdrawal symptoms without triggering adverse effects. Please let us know how you're doing.

 

What is your daily drug schedule, with dosages for each drug?

[Aember]

My daily schedule is now nothing. I was just on Zyprexa. I jumped off because I had weird dreams at 0.61 and awoke half-sedated with involuntary movements. I also had already started having withdrawal sweating at that point and figured, after the pharmacist told me it was fine, to jump off, even though I had originally planned to microdose taper to the end of September. The unknown of how much worse I may feel tonight and tomorrow terrifies me. I am feeling ok right now, but I have moments of pain and agony.

[Aember]

A video update about my condition: 

 

[Sunclast]

God bless you!  So glad you got better!