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I was wondering if anyone can relate as I have had an illness that has plagued me for years with no answers. It all started when I was pregnant 6 years ago. I started noticing in stores with big overhead lighting my eyes couldn't adjust to it. It was as if it was just turned so bright my brain wasn't adjusting properly. I also noticed feeling a bit spacey but put it all down to hormones. It would come and go and then a few weeks later, I lost the baby. After that, I just went downhill over the years but doctors couldn't find anything. I was just told it was anxiety and depression because of the baby loss. Of course I was upset about the loss, but I know my body and this isn't anxiety and depression.
These are the things I have had over the years: twitching all over body, stabbing sensations, constant light sensitivity to where all indoor lighting looks really bright and like my brain can't process it, off balance, feeling drunk and like my brain is poisoned and toxic 24/7, weird flashes of light when falling asleep at night, racing heart, feeling faint upon standing up, chronic constipation, rashes, itching and hives over body, achy joints, nausea, vertigo, bloating, gas, sound and smell sensitivity, smelling things that aren't there, severe head pressure, back pain, constant swaying sensation and like the ground is moving, feelings of nerve irritation, up and down temperature, burning mouth syndrome, chronic sore throat, burning all over body, itchy all over body, chest pain, bad breath, neck tightness, pain, feeling like head is too big for neck, hair coming out.
Things I have tested for: lyme, positive on two specialized tests, negative on other lyme testing.
Thyroid - Fine
Sibo- Treated
MRI - Normal
Told I had mold illness. Treated with binders for 9 months, made no difference to symptoms
May of this year found mold in my home - felt worse but also had a chiropractor adjust me for terrible pain in my lower back and have never been the same since.
I now have a constant swaying sensation as if I am on a boat trying to keep my balance, and I now feel like I am constantly being strangled, clicking when I swallow and feeling like the mechanism in my throat is off and swallowing isn't working properly. This sensation gets worse with all foods and I feel spasms in my throat. I also seem super reactive to things.
I am at my wits end. I want my life back and feel like I am never going to get better and wonder if anyone else has had something similar.
It sounds like your hormones are still off, unfortunately, and you have developed a few issues related to that. Many of your symptoms sound like migraines, which can have very unusual symptoms. Migraines are not uncommon if your hormones fluctuate. I have always had issues with them related to hormones, at times getting migraines for 6 days at a time or longer.
Otherwise, it sounds like some of your other symptoms may be from reflux, which can be silent. Reflux is not uncommon during and after pregnancy, but it sounds like yours is still bad if you are having spasms. You may need to modify your diet and see if that helps a bit. I stopped birth control for a bit and had horrible heartburn. A course of PPIs (like prilosec) for 4 months and diet modification helped a lot. Otherwise, I have continued to have other weird symptoms I attribute to perimenopause. Even in my 20s, I had hormonal issues, so I am used to it at this point.
I was having symptoms that no doctor or specialist could make go away...until I took this test which indicated that I needed to stop eating wheat and cow's milk products. I was dubious, but after 1.5 years on the diet, I've become a believer.
that is a lot to deal with.
when i was looking to find someone to finish out the lease when I moved, one of the renters I met described something that sounded similar and as severe. She said one of the most difficult elements was getting a diagnosis at all. and it kept getting worse. when i met her the diagnosis which doctors had given her (and she had been to many many doctors and specialists) was something called "allergic to the environment" which basically was a catch all that said she was having an allergic reaction to so many things it had reached a point where anything and everything affected her adversely. she had to quit her job (this was before the days of telework). she was dealing with a severe illness. she had financial difficulties due to loss of income and expensive medical care. she lost her health insurance. she couldn't get a job. she had moved twice and was looking to move again. and she was pursuing a legal case against a business (along with several other claimants) which she had lived nearby that was found to have released high levels of toxic chemicals and a bunch of people that lived in proximity to that business became severely ill.
it was the most severe set of symptoms i had ever seen in someone i personally met. she said the chemical toxicity initially kicked it off, and she moved of course, but her body just kept having a toxic reaction. and after years of this, the doctors still didn't know what was going on, and there was no treatment that seemed to help.
best wishes in dealing with what you are going through. i would say research and read as much as you can, and be willing to explore and try to connect with what "other things" in your life might be connected to this, no matter how strange that may seem, for instance some type of trauma or healing that is asking to be seen and released.
consider moving, even temporarily, to try and identify if something in the place you are living is causing you to be ill. Go live someplace else for 3 months or 1 month or 6 months, and notice changes. easiest thing to check and remedy, is if where you are living is making you sick, then MOVE. because the obvious question is, if back in May mold was found in your home, and it is now December, seven months later, why are you even still living there? Why don't you move? Your health is more important.
If you were positive on two specialized Lyme tests, then you have Lyme. The test that is commonly used is only 50% accurate according to the CDC's own admission. A Johns Hopkins study found it to only be about 30% accurate. So just because that one test was negative doesn't mean you don't have it. If you took three pregnancy tests, and 2 came back positive and one came back negative, chances are, you're pregnant.
Find a Lyme Literate Medical Doctor (LLMD). You can go to the International Lyme and Associated Disease Society (ILADS) website, and there is a find a doctor feature.
After being told by 9 doctors that I didn't have Lyme and it was all in my head, I finally sought out an LLMD. I was miraculously cured with antibiotics that those same doctors insisted wouldn't work because they claimed I didn't have Lyme or any other infection. I have been completely symptom free for 4 years now. Feel free to PM me with any questions.
I thought POTS also and had pulled up the same link, then saw you had posted it.
Read an article recently on some people who had Covid are now having POTS syndrome as an after-effect.
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