Strange condition

Posted by kristiesmith221 @kristiesmith221, Wed, Apr 10 7:17pm

Hello! Has anyone heard of someone having the following- could it be Epstein Barr or Lyme Disease? Meningioma brain tumor, central apnea, detached retina, chronic migraine, migraine with aura, Alice in Wonderland Syndrome, REM Sleeping disorder, Horner's and Adie's Pupil?

Hello, @kristiesmith221, and welcome to Mayo Clinic Connect.

Just to make sure to understand your question, is a doctor considering all these potential diagnoses for you or someone close to you?

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Hello and thank you for responding. Yes, I have been diagnosed for all conditions through UTSW in Dallas.

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@kristiesmith221

Hello and thank you for responding. Yes, I have been diagnosed for all conditions through UTSW in Dallas.

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These are proven through MRIs CATSCAN and many other tests. I guess I keep trying to connect the dots to see why all of this is happening? I have incredible drs who are finding diagnosis but there doesn’t appear to be one factor causing all of these conditions. Thank you for reading my post! ❤️

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@kristiesmith221

These are proven through MRIs CATSCAN and many other tests. I guess I keep trying to connect the dots to see why all of this is happening? I have incredible drs who are finding diagnosis but there doesn’t appear to be one factor causing all of these conditions. Thank you for reading my post! ❤️

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Thanks for the clarification, @kristiesmith221, that you have been diagnosed with all of these symptoms and you are looking for one factor causing all of these conditions: Epstein Barr or Lyme Disease, meningioma brain tumor, central apnea, detached retina, chronic migraine, migraine with aura, Alice in Wonderland Syndrome, REM Sleeping disorder, Horner's and Adie's Pupil.

I think that @johnbishop @jenniferhunter @gloriajean @warpedtrekker @danny59 @skk15 @basslakeview @mrmie may have some thoughts for you on potential connections with all these diagnoses and provide some support.

Did your doctors have a theory, @kristiesmith221, on a common factor? How are you managing these conditions presently?

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@lisalucier

Thanks for the clarification, @kristiesmith221, that you have been diagnosed with all of these symptoms and you are looking for one factor causing all of these conditions: Epstein Barr or Lyme Disease, meningioma brain tumor, central apnea, detached retina, chronic migraine, migraine with aura, Alice in Wonderland Syndrome, REM Sleeping disorder, Horner's and Adie's Pupil.

I think that @johnbishop @jenniferhunter @gloriajean @warpedtrekker @danny59 @skk15 @basslakeview @mrmie may have some thoughts for you on potential connections with all these diagnoses and provide some support.

Did your doctors have a theory, @kristiesmith221, on a common factor? How are you managing these conditions presently?

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Hello Lisa! I was wondering if I could have Epstein Barr or Lyme since I have been diagnosed with all of the others. None of the doctors have mentioned Epstein Barr or Lyme – it's just been my researching for answers that make me wonder about either one of those causing the conditions.
For the migraines, I am receiving Botox (32) shots per 3 months, taking Maxalt as needed and I'm also on a preventative medication for them. For the cluster headaches, I take Advil. What is also helping is the AIRCURVE10 Bi-pap for the central and obstructive apnea,
The doctors help me with Alice in Wonderland (AIW) through medicating the migraines.
The chronic aura (black moving dots, floaters, and flashing lights) are a part of the AIWS I've been told.

Nothing is really done for the pupils except that I dodge light constantly. I've noticed with the cluster headaches, lying down makes them so much worse, so I try to stay active as much as possible.

The main lesson I've learned in all of this is to keep moving. I may go to an event when I can, but I am easy on myself and stay until I get tired. Just getting out helps, but there are days when I cannot go anywhere, and I have had to make peace with that part of myself.

I've been searching, going to drs, looking online for an answer and cannot seem to find the reason for all of this happening other than possible Lyme or Epstein Barr. I will experience chills, and a mild sore throat when I feel really bad.

Thank you for taking the time to read all of this! I appreciate it so much!

Liked by Lisa Lucier

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@kristiesmith221

Hello Lisa! I was wondering if I could have Epstein Barr or Lyme since I have been diagnosed with all of the others. None of the doctors have mentioned Epstein Barr or Lyme – it's just been my researching for answers that make me wonder about either one of those causing the conditions.
For the migraines, I am receiving Botox (32) shots per 3 months, taking Maxalt as needed and I'm also on a preventative medication for them. For the cluster headaches, I take Advil. What is also helping is the AIRCURVE10 Bi-pap for the central and obstructive apnea,
The doctors help me with Alice in Wonderland (AIW) through medicating the migraines.
The chronic aura (black moving dots, floaters, and flashing lights) are a part of the AIWS I've been told.

Nothing is really done for the pupils except that I dodge light constantly. I've noticed with the cluster headaches, lying down makes them so much worse, so I try to stay active as much as possible.

The main lesson I've learned in all of this is to keep moving. I may go to an event when I can, but I am easy on myself and stay until I get tired. Just getting out helps, but there are days when I cannot go anywhere, and I have had to make peace with that part of myself.

I've been searching, going to drs, looking online for an answer and cannot seem to find the reason for all of this happening other than possible Lyme or Epstein Barr. I will experience chills, and a mild sore throat when I feel really bad.

Thank you for taking the time to read all of this! I appreciate it so much!

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No one seems to know why all of this has happened. I had abdominal migraines (only a few ) as a child and headaches as an adult, however, it kept getting worse. The headaches turned into AIWS, chronic aura, fatigue, and from the floaters- the detached retinas. One completely detached (OD) and the other (OS) was lasered.
The meningioma tumor is coming from the lower left part of my skull. The drs have said it has grown, but is not causing the other problems- it came afterward. We are waiting to see if it continues to grow and will do a procedure for cancer patients (even though mine is benign) that is similar to laser. They do not want to do surgery because of a large blood vessel nearby. Thank you so much for any help!

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Hello @kristiesmith221, I would like to add my welcome to Connect along with @lisalucier and other members. I know it can feel overwhelming when faced with a hard to diagnose condition. I'm glad that you are actively seeking answers and learning as much as you can about your condition. It's also great that you have doctors that are working with you and listening to you. I have no medical training or background but it does seem like a meningioma brain tumor may cause some of the symptoms you are describing. I did find an article that does into depth discussing the meningioma brain tumor that may provide some insight for you.

UCLA Health – Meningioma Brain Tumor
http://neurosurgery.ucla.edu/meningioma-brain-tumor

I also wonder if you doctors are still trying to narrow your condition down to a common factor. Have you asked the doctors how or if the current conditions are related?

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@johnbishop

Hello @kristiesmith221, I would like to add my welcome to Connect along with @lisalucier and other members. I know it can feel overwhelming when faced with a hard to diagnose condition. I'm glad that you are actively seeking answers and learning as much as you can about your condition. It's also great that you have doctors that are working with you and listening to you. I have no medical training or background but it does seem like a meningioma brain tumor may cause some of the symptoms you are describing. I did find an article that does into depth discussing the meningioma brain tumor that may provide some insight for you.

UCLA Health – Meningioma Brain Tumor
http://neurosurgery.ucla.edu/meningioma-brain-tumor

I also wonder if you doctors are still trying to narrow your condition down to a common factor. Have you asked the doctors how or if the current conditions are related?

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Thank you for the link! I am going to read it tonight… The neuro-surgeon actually told me the other day, the meningioma doesn't have anything to do with my condition. He said they can cause tremendous issues, but where mine is located, it's not causing the problems. One neurologist told me I am trying too hard to wrap everything up into one- I may just have conditions that are unrelated. I believe it is baffling to everyone. I know Lewis Carroll had some of the issues with AIWS, but not the others I have mentioned. I am thankful to have the best of the best- it is just hard to deal with conditions without any true answers anyone can give. Thanks so much for the replies!! I appreciate it and will read the article… :

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