Suspecting encephalopathy?

[SpinachHands]

There's more info on my previous posts and blog, but we're really concerned about increasing neurological symptoms my partner is having, and suspect potential encephalitis. I'm speaking to their GP tomorrow and getting a second opinion from neurology as they dismissed everything as FND a couple of months ago. Newer issues include:
- very severe withdrawal symptoms, even from reducing a medicine by 1mg (a few grains) or stopping a supplement or vitamin. They feel like their veins are being filled with styrofoam, like this blanketing pressure and weight, alongside intense head pain. There's also a separate distinct "low GABA" feeling that comes with sudden fatigue but an increased agitation, irritability, but also feeling gross and having intrusive thoughts and waking nightmares
- intense head and stomach pain, particularly when eating. We'd been chalking this up to worsening MCAS, but this felt different than their usual MCAS
- worsening brain fog, memory, episodes of feeling dazed, giddy, or confused
- yesterday an episode of uncontrollable laughter that lasted an hour, they weren't delirious in any way, and between laughter could tell me they couldn't control or stop it. This has never happened before
- today an episode of almost complete paralysis, they said it was like they were signalling their body to move but it wouldn't. They didn't feel particularly fatigued, and could talk through gritted teeth as they couldn't really move their jaw or mouth. It was accompanied by bad lower back and glute pain, and another brief laughing episode. During this we had paramedics come out but they didn't seem particularly concerned so we didn't risk the hospital trip. They slowly gained movement back after about an hour or two and were ok for about 4-5 hours but it's been happening again periodically this evening
- worsening episodes that we chalked up to their sympathetic nervous system, of extreme agitation, panic, anger, fear, where they might scream, cry, throw things, or hit themselves uncontrollably

All of this just screams neuro issues, but we don't know what and can't seem to get any doctors to care. We are suspecting maybe some kind of encephalitis, so I'm trying to pester neurology into doing blood tests. Has anyone had it and think these symptoms fit? There's hundreds more small symptoms we think could be linked but there's so much going on that it's hard to pick apart.

 

[andyguitar]

Newer issues include:
- very severe withdrawal symptoms, even from reducing a medicine by 1mg (a few grains) or stopping a supplement or vitamin.

Could it be that the medicine/supplements they were taking were helping and stopping them is taking away that help?

 

[Mary]

Newer issues include:
- very severe withdrawal symptoms, even from reducing a medicine by 1mg (a few grains) or stopping a supplement or vitamin.

@SpinachHands - I don't know or can't recall what drug(s) your partner is reducing but, depending on the drug, there can be severe withdrawal symptoms. I think you did mention cutting amantadine before - see this about amantadine withdrawal: https://www.drugs.com/medical-answers/you-discontinue-amantadine-3546645/

it talks about how a slow taper is necessary to reduce it safely.

Also, if you google "amantadine withdrawal", there are a ton of hits - all stressing about sometimes severe neurological symptoms when stopping it. This might explain a lot of what your partner is going through.

And if your partner was on a benzo, that too needs a verrrrrry slow taper to be done safely.

If I stopped something I very much need such as potassium, it would only take maybe 2 days for symptoms of hypokalemia to appear and I wouldn't want to see what would happen if I didn't resume it.

So it would help if you were specific about exactly what drugs, supplements and vitamins your partner has either stopped or reduced the dose for, and also how much was the original dose and how much you've cut that dose by. One mg. can have big effects. It took me 8 months to get off of 1.5 mg. of lorazepam and it wasn't easy.

 

[lenora]

Well, I was a victim of autoimmune encephalitis about 2-3 years ago. It hit me along with another group of illnesses.

If you watch the movie BRAIN ON FIRE you'll see how it can affect the different lobes of the brain, thus the symptoms. A psychiatrist is often needed to diagnose it and it can affect the personality of the person who is ill.

I also developed two separate types of epilepsy during this time. I'm on meds for both of them. Fortunately there were doctors in the ER when I began to have seizures. That helped with diagnosis.

Insofar as the AE itself, my eyes were affected. First the left one was weak and I couldn't see well, and then the right finally just gave up the day I was hospitalized. Strangest of all was the fact that I was doing mild exercise inside the house consisting of different movements, one including walking around the entire house. One day I was doing it and the very next my left leg was paralyzed.

My husband said he had been concerned a few days before I went to the ER. I was slow in answering questions and the last day, I thought I was talking, but no sound was evident.

I developed two types of epilepsy while at the ER. Fortunately the doctors saw the type and I'll always be on meds for the types I have. Would you believe I had a heart attack on top of everything else? I was in a coma for three days.

I saw a psychiatrist via Zoom (or whatever it was). This was each morning for a period of at least 3 days. I was very fortunate. My psychiatrist symptoms were not magnified, although I know my mind has been affected. My memory is not what it was and that upsets me....but in the range of things, it's a small thing. I could possibly recover some of it, but it would take extreme work and I'm a rather burned-out patient at this time.

I do know that encephalitis often involves a stiff/sore neck. I didn't have that, but bear in mind that my situation was autoimmune. I carry it within me, and I don't know if I'll ever have it again or not. We'll be wiser, if so. I don't know what to say to you....but I would see a neurologist who is good at diagnosis. Ask different questions....and be prepared to make a few trips back and forth. Your partner is very ill, so I don't know how that will be handled. Meds did bring me out of the AE, cortisone particularly (but others as well), and I felt better than I had in years. Walking everywhere with my newfound strength. I was warned that it would wear off and I would face profound weakness. Profound doesn't even to begin what occurred.

So be prepared for that and have bars installed near the toilet and in the shower. I've never been so weak in my life. I steadily recovered. Oddly enough I read the book with the same title as the movie (down streaming), It's pretty basic, not my type of book at all, but it was fortuitous b/c at that time autoimmune encephalitis wasn't even known about. It helped, especially with the psychiatric information and why a doctor who specializes in the parts of the brain (I guess they all do, to a certain extent) is so necessary for recovery. Don't think one isn't. Things like days, dates, and other basic things are asked and it's hard to remember certain things. I wasn't released until a team of doctors determined that I was OK.

One other thing: I had two spinal taps that were sent to the Cleveland Clinic for diagnosis. The first one was done while I was in the coma, the second while I was recovering and even though I was flat for 24 hrs., I developed a very nasty side to my personality, talked constantly and was finally sedated. Fine, except that the sedative gave me the worst headache I've ever had and many of the symptoms of my other neurological illnesses "came to life." All disappeared with time and that day and night were perhaps the hardest part of the entire ordeal. The Cleveland Clinic is at the forefront of autoimmune diagnosis and can tell for certain if you have it, or it is on the wane. The tap itself was much better than a few I had done about 40+ years ago. Not bad at all, except what followed the next day. If possible, get a very early morning appointment.

You must get a diagnosis and there is plenty to read about encephalitis and autoimmune encephalitis. There wasn't even such a short time ago, but a lot of research is being done b/c the symptoms do involve a lot of psychiatric behavior. In other words, doctors are interested, but I know a lot of my doctors hadn't even heard of it. That's why I specify someone familiar with the symptoms. Good luck. Yours, Lenora

 

[linusbert]

what Marry said.

i recently stumbled upon this video. where a healthy 28 guy woke up paralyzed (and got well later on).

also dopamin can be a problem.

 

[MecfsPatient]

I recommend joining the ME/CFS brain and spine facebook group, I think you will find many people on there have similar symptoms and may be able to offer more ideas on what has helped them. I wish I had more to offer, I am very sorry you are both dealing with this

 

[Wayne]

We are suspecting maybe some kind of encephalitis

If I may make a suggestion: Just assume it is some kind of encephalitis (without some kind of doctor or medical certification), and treat it in as natural a way as possible. Seems there must be numerous ways to go about it that would be low risk, low impact. Therapeutic enemas of various kinds can be very powerful tools for addressing a variety of issues that modern medicine is unable to diagnose or treat properly.

 

[SpinachHands]

@SpinachHands - I don't know or can't recall what drug(s) your partner is reducing but, depending on the drug, there can be severe withdrawal symptoms. I think you did mention cutting amantadine before - see this about amantadine withdrawal: https://www.drugs.com/medical-answers/you-discontinue-amantadine-3546645/

it talks about how a slow taper is necessary to reduce it safely.

Also, if you google "amantadine withdrawal", there are a ton of hits - all stressing about sometimes severe neurological symptoms when stopping it. This might explain a lot of what your partner is going through.

And if your partner was on a benzo, that too needs a verrrrrry slow taper to be done safely.

If I stopped something I very much need such as potassium, it would only take maybe 2 days for symptoms of hypokalemia to appear and I wouldn't want to see what would happen if I didn't resume it.

So it would help if you were specific about exactly what drugs, supplements and vitamins your partner has either stopped or reduced the dose for, and also how much was the original dose and how much you've cut that dose by. One mg. can have big effects. It took me 8 months to get off of 1.5 mg. of lorazepam and it wasn't easy.

Thankfully they don't seem to be getting the psychiatric issues that seem common with severe amantadine withdrawal (hallucinations, paranoia, delirium), they've been of very sound mind. We have however noticed the need for potassium, or electrolytes in general. I've recently made a post about our current difficulties with that. The original dose was 50mg, they started by tapering 5mg at a time, but then only 1-2 at a time, every few days, as the withdrawal got worse. They're on 13mg now, but with the severity of the withdrawal it could take a month to get off that at quickest. The problem is it's definitely the cause behind a lot of their current issues, so getting off it as soon as possible is a priority.

 

[SpinachHands]

Well, I was a victim of autoimmune encephalitis about 2-3 years ago. It hit me along with another group of illnesses.

If you watch the movie BRAIN ON FIRE you'll see how it can affect the different lobes of the brain, thus the symptoms. A psychiatrist is often needed to diagnose it and it can affect the personality of the person who is ill.

I also developed two separate types of epilepsy during this time. I'm on meds for both of them. Fortunately there were doctors in the ER when I began to have seizures. That helped with diagnosis.

Insofar as the AE itself, my eyes were affected. First the left one was weak and I couldn't see well, and then the right finally just gave up the day I was hospitalized. Strangest of all was the fact that I was doing mild exercise inside the house consisting of different movements, one including walking around the entire house. One day I was doing it and the very next my left leg was paralyzed.

My husband said he had been concerned a few days before I went to the ER. I was slow in answering questions and the last day, I thought I was talking, but no sound was evident.

I developed two types of epilepsy while at the ER. Fortunately the doctors saw the type and I'll always be on meds for the types I have. Would you believe I had a heart attack on top of everything else? I was in a coma for three days.

I saw a psychiatrist via Zoom (or whatever it was). This was each morning for a period of at least 3 days. I was very fortunate. My psychiatrist symptoms were not magnified, although I know my mind has been affected. My memory is not what it was and that upsets me....but in the range of things, it's a small thing. I could possibly recover some of it, but it would take extreme work and I'm a rather burned-out patient at this time.

I do know that encephalitis often involves a stiff/sore neck. I didn't have that, but bear in mind that my situation was autoimmune. I carry it within me, and I don't know if I'll ever have it again or not. We'll be wiser, if so. I don't know what to say to you....but I would see a neurologist who is good at diagnosis. Ask different questions....and be prepared to make a few trips back and forth. Your partner is very ill, so I don't know how that will be handled. Meds did bring me out of the AE, cortisone particularly (but others as well), and I felt better than I had in years. Walking everywhere with my newfound strength. I was warned that it would wear off and I would face profound weakness. Profound doesn't even to begin what occurred.

So be prepared for that and have bars installed near the toilet and in the shower. I've never been so weak in my life. I steadily recovered. Oddly enough I read the book with the same title as the movie (down streaming), It's pretty basic, not my type of book at all, but it was fortuitous b/c at that time autoimmune encephalitis wasn't even known about. It helped, especially with the psychiatric information and why a doctor who specializes in the parts of the brain (I guess they all do, to a certain extent) is so necessary for recovery. Don't think one isn't. Things like days, dates, and other basic things are asked and it's hard to remember certain things. I wasn't released until a team of doctors determined that I was OK.

One other thing: I had two spinal taps that were sent to the Cleveland Clinic for diagnosis. The first one was done while I was in the coma, the second while I was recovering and even though I was flat for 24 hrs., I developed a very nasty side to my personality, talked constantly and was finally sedated. Fine, except that the sedative gave me the worst headache I've ever had and many of the symptoms of my other neurological illnesses "came to life." All disappeared with time and that day and night were perhaps the hardest part of the entire ordeal. The Cleveland Clinic is at the forefront of autoimmune diagnosis and can tell for certain if you have it, or it is on the wane. The tap itself was much better than a few I had done about 40+ years ago. Not bad at all, except what followed the next day. If possible, get a very early morning appointment.

You must get a diagnosis and there is plenty to read about encephalitis and autoimmune encephalitis. There wasn't even such a short time ago, but a lot of research is being done b/c the symptoms do involve a lot of psychiatric behavior. In other words, doctors are interested, but I know a lot of my doctors hadn't even heard of it. That's why I specify someone familiar with the symptoms. Good luck. Yours, Lenora

Thank you Lenora, as always, for your detailed response. Knowing as much as we can about this is always helpful, including information from someone who has gone through the experience. As we're in the UK I'm not sure if we can access the Cleveland clinic. I've been trying to get a neurologist via the NHS that won't just dismiss everything as a functional neurological disorder, but none of them seem to want to bother to use their brains! My partner is hoping to be able to at least get an in-person assessment and blood tests to get someone to take them seriously, but the MRI and EEG as well might be too much for them to do. This will be their first time out of their bed in over a year, let alone out of the house and into hospital, so we really need to be sure about this and make the trip count.

 

[kangaSue]

Oxford University Hospitals specialist Division of Clinical Neurology and Neuroimmunology Testing division would be the UK equivalent to somewhere like Cleveland Clinic.
https://www.ndcn.ox.ac.uk/divisions/dcn
https://www.ouh.nhs.uk/immunology/diagnostic-tests/neuroimmunology.aspx

 

[MecfsPatient]

Thank you Lenora, as always, for your detailed response. Knowing as much as we can about this is always helpful, including information from someone who has gone through the experience. As we're in the UK I'm not sure if we can access the Cleveland clinic. I've been trying to get a neurologist via the NHS that won't just dismiss everything as a functional neurological disorder, but none of them seem to want to bother to use their brains! My partner is hoping to be able to at least get an in-person assessment and blood tests to get someone to take them seriously, but the MRI and EEG as well might be too much for them to do. This will be their first time out of their bed in over a year, let alone out of the house and into hospital, so we really need to be sure about this and make the trip count.

If you are going to get an MRI, I highly recommend trying to get a cervical and lumbar MRI at the same time (especially if he’s sedated already). Getting MRIs can be so impossible for very severe ME patients and a high percentage of very severe patients especially with severe neurological conditions have underlying structural issues. Even if it’s impossible to pursue/not something you want to pursue now, you may regret not getting it later.

 

[MecfsPatient]

i wonder if these could be unusual symptoms of IIH too. I know someone who had many of these symptoms due to IIH and jugular compression which resolved after jugular decompression and stenting. Including the paralysis, blackout episodes, personality changes. Their lumbar puncture pressure wasn’t actually super high but they did feel better after fluid was removed and drained down to a pressure of 7. Are his symptoms positional? Meaning they change substantially depending on the position of his head?

 

[lenora]

Yes, you want an MRI from the entire head down the entire spine. I'm sure that there is some well known hospital in England that can deal with Autoimmune Encephalitis. Apart from the spinal taps, everything is done via computer. I was unconscious when a lot of my testing was done. That's just fine.

I see that you have an answer about Oxford University. Good! Yours, Lenora

 

[Violeta]

Uncontrollable laughter can be a symptom of manganese poisoning or magnanese deficiency. Homeopathic remedies apply to either poisoning or deficiency.

Did your partner evey have Lyme Disease?

I see paralysis on the list of manganese symptoms, too.

Mental symptoms of anxiety and fear, too.

http://www.homeoint.org/books/boericmm/m/mang-act.htm