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Old 03-19-2021, 05:40 PM   #1
Happy Camper
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Default Lesions on brain and Alice in Wonderland syndrome?

Is there reason to think if I'm having symptoms of Alice in wonderland syndrome it could be due to the multiple lesions in my brain, and since the lesions do not go away, the Alice in wonderland syndrome will not go away, either?

I got the impression from the internet that AIWS is harmless and usually resolves itself, but it can also be caused by brain lesions, which I have. I have not brought this up with anyone since there are no treatments, but I'm considering it now since I don't feel that I'm only schizoaffective. I don't want to be medicated for the AIWS symptoms because they're mistaken for schizoaffective symptoms, for example.
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Old 03-19-2021, 10:01 PM   #2
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Default Re: Lesions on brain and Alice in Wonderland syndrome?

Quote:
Originally Posted by Happy Camper View Post
Is there reason to think if I'm having symptoms of Alice in wonderland syndrome it could be due to the multiple lesions in my brain, and since the lesions do not go away, the Alice in wonderland syndrome will not go away, either?

I got the impression from the internet that AIWS is harmless and usually resolves itself, but it can also be caused by brain lesions, which I have. I have not brought this up with anyone since there are no treatments, but I'm considering it now since I don't feel that I'm only schizoaffective. I don't want to be medicated for the AIWS symptoms because they're mistaken for schizoaffective symptoms, for example.
there is treatment for it depending upon what your individual symptoms and root cause of the Todds Syndrome aka alice in wonderland syndrome. I am on beta blockers / antidepressants combo that works on my mental and physical forms of this problem.

talk with your treatment providers they will help you get tested to find out what and how this presents in you and treat you for it.
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Old 03-20-2021, 01:16 PM   #3
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Default Re: Lesions on brain and Alice in Wonderland syndrome?

i agree with the wise and wonderful amandalouise. Please do contact your therapist or psychiatrist. Hopefully they will be able to Help you. So Sorry you're struggling. Please do not give up. Sending many safe, warm hugs to BOTH you, @Happy Camper, your Family, your Friends and ALL of your Loved Ones! Keep fighting and keep rocking NO MATTER WHAT HAPPENS, OK?!
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Old 03-20-2021, 02:41 PM   #4
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Default Re: Lesions on brain and Alice in Wonderland syndrome?

I've been telling my mental health providers for 20 years that I have AIWS. I am quite sure that it's some sort of neurological problem, not a psychiatric one. All I have ever heard from them is, "Hmm...that sounds odd, I'm not sure what it is." No medication has ever helped me. I did have a CT scan once, which didn't show anything. My current pdoc has finally referred me to a neurologist - but for a stubborn tremor, not for the AIWS. I will, however, mention it to the nuero. I don't expect much, though.
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Old 07-14-2021, 05:33 PM   #5
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Default Re: Lesions on brain and Alice in Wonderland syndrome?

UPDATE

I have seen two Doctors about this. One, a psychologist, was unable to do anything.


The second was a neurologist. He had heard of this condition before, and said it sounds like I am having the symptoms of it. Concerning the lesions, he said that it was doubtful lesions would cause these symptoms, and it is brain tumors that would normally be suspected (I don't have any). As I had see him before in the past, he already did the standard tests- MRI imaging, spinal fluid tests, albeit for other complaints, but those results apply here. But now, for AIWS he wants to get an EEG done, and thinks this is good whether I am having any symptoms or not, when it is done. He also said, if I am having the symptoms, to contact them so they can measure me as it's happening, too.


I am happy that steps are being taken.
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Old 07-20-2021, 07:03 PM   #6
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Interesting, one pain specialist from UCLA in Calif looked at my MRI for my migraines. He said that the brain lesions were an indication that my migraines were a real thing. Other pain specialists after I moved said they had never heard of that. Go figure. I had no idea they were there but sure knew I had continuous migraine pain.

So much is really an unknown in the human brain
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