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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!
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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!