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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I have had episodes of "brain on fire" sensations as well! Sometimes it has been accompanied by swollen lymph nodes in my head and neck, and sometimes not.
High doses of anti viral herbs like Elderberry and Andrographis help resolve this.
Sometimes my eyes have been affected and sometimes not. The antiviral herbs have worked over time to get rid of the "on fire" sensations completely but it sometimes takes 1-2 weeks.
With these flareups, I take a tablespoon of Elderberry syrup (Gaia brand) every few hours. The andrographis I was dosing at 400mg about 4 times a day. I also tend to take a lot of vitamin C (dosed as high as tolerable) for its antiviral activity. Sometimes I'll add in extra vitamins A and D for antiviral activity too. I've never tried Valtrex so I can't compare. I just know what I have found helpful. If inflammation feels severe I also add in lots of turmeric, fish oils, and CBD too. I take a lot of supplements and I'm continuously changing them around to deal with different symptoms.
Yes, I have that exact heavy eye / eye pressure / eye fatigue / swollen eyelid feeling. All the descriptions here are spot on. I described it to the one person I know in real life with mold sensitivity because I assumed they felt the same, but they didn't know what I meant.
I've taken andrographis before - maybe I'll try again as I have a bag here. I didn't realize Lysine would be anti-viral - I take it sometimes to help with canker sores but wasn't aware of the pharmacology of it. Also haven't tried Elderberry but I think I have some here - bought it in February for COVID worries if I recall.
Hm, when you say the person you asked had mold sensitivity or did they (or you) actually test positive for mold toxins? I tested positive for three and have been on various binders and nasal sprays. Overall a little better but I know it takes time. Also, pretty certain mold is to blame since when I go into a place with mold, my symptoms are noticeably worse for a could days after. That just me though. I’ve heard viruses can make mold in the body cause trouble for the first time even years after the initial exposure.
I have the burning/swollen brain sensation too. High dose IVIG helped and plasmapheresis kept it away..Does anyone else experience a "hot swollen brain" sensation? I frequently have this disturbing symptom, but only during high mold season. It is usually accompanied by burning eyelids (both eyes) and a spacey, derealized feeling, like I'm not quite present in my body, but operating on remote control. However, I am still mentally coherent, not dizzy, and can move about okay, do chores, etc. But the feeling of heat and pressure in my head is still awful. And it's not anything like a regular headache!
Strangely enough, my blood pressure is normal all this time and my thermometer never shows any fever (and I have two thermometers to be certain) - in fact, my temp is actually often a bit low at these times, like ~98.2°. Odd too, I have no congestion, sore throat, nausea, or shortness of breath, but my brain and eyes (and often my skin) sometimes feel "on fire". Lately, it often feels worse in the left side of my head, the same side I had sudden hearing loss (still not restored) three months ago. Tinnitus gets worse in the left (deaf) ear too.
Could this be small fiber sensory neuropathy gone wild in my brain? (Just thought of that, so I don't think it's autosuggestion going on here.)
Thanks in advance for any "me too"s, comments, or suggestions!
I'm resuscitating an old thread, in hopes that I might help some of you in your battle against interior mold.
I discovered a major source of mold inside my house. My old hot water heater (in a utility closet INSIDE the house) had sprung a slow leak and had apparently been creating a veritable cesspool of warm, murky water around the base for quite a long time, which undoubtedly had been releasing tons of mold spores into the house through the vent grill in the door all that time. I had a giant petri dish of scummy green mold flourishing in the center of my house!!!
I had never had any reason to open the door of that utility closet, but one day I did, looking for the origin of an odor - and discovered that disgusting puddle of warm sludge on the floor around the water heater!
I had the old water heater removed, then I scrubbed the wooden floor repeatedly and disinfected it with chlorine bleach for several hours until it was practically white, and then a new water heater was installed. It's stayed dry as a bone in there ever since.
I haven't had the "brain on fire" symptom since then, but I still experience what @hapl808 described above in this thread: "I have that exact heavy eye / eye pressure / eye fatigue / swollen eyelid feeling" - which makes me think that symptom is not related to the mold.
For me, the eye problems are only on the left side, the side where I suffered the SSNHL (hearing loss) that hasn't improved since I last posted. What's worse, is that this awful eye sensation (which doesn't produce a visible physical change) is now accompanied by a general numbness and pressure in the left side of my head. And it's much worse after my beloved morning coffee! And it's often followed by extreme exhaustion. It seems to have gotten worse in the week following my first COVID vaccine. I'm waiting until I've had my second dose of vaccine plus a week or two before I see my ENT/allergist and maybe a neurologist about this.
But I'm sure it's time to get tested for allergy to coffee/caffeine, which was the "staff of life" for me every morning. I've never been allergic to it before now. But besides aggravating the discomfort in my eye/eyelid, and the numbness and pressure in the left side of head, it also causes my tongue to sting and I feel like I need to go back to bed if I have more than one small cup.
I just seem to trade one cure for another ailment. But that seems so common for so many of us on this forum.