Memory & Toxic Exposure: Many Ways to Regain Your Brain


What is toxic exposure? How do you know if you have it? Toxic exposure can cover a variety of things, including self-inflicted toxins (such as drugs, and alcohol), medical treatments such as chemotherapy, and environmental exposures to carbon monoxide or mold. It can be very difficult to know that you are suffering from one of these toxins, unless you know specifically to look for it.

Can Toxins Attack Your Brain?

Too often, memory problems are dismissed as something that happens with age, or because of life being too busy and we don’t take the proper steps to realize that this may be a symptom of something larger.

When these toxins attack the brain, they affect one’s ability to learn, love, and behave. It may feel like your spouse is always forgetting something, but could it be something bigger? When there is a sudden change in personality, mood, memory, or sleep, it’s important to investigate the possible causes that may not seem as obvious.

Is it Depression or is it Mold?

Toxic mold exposure has also been linked to more serious, long-term effects such as:

• Memory loss
• Insomnia
• Anxiety
• Depression
• Confusion
• Trouble concentrating

In many cases mold, carbon monoxide poisoning, or other toxins damage the brain and result in decreased neurological function including memory loss, small personality changes, difficulty concentrating and other symptoms that often lead to misdiagnosis. It’s important to realize that this toxic exposure and its effects on the internal structure of your brain can trigger both long and short-term effects that may be treatable.

What Can You Do If Your Suffering from Toxic Exposure?

In our experience, there is a way for recovery. At Amen Clinics we have successfully treated many people with toxic looking brains, which is why it is important to look at your brain before we try to treat it. Get information on how Amen Clinics can help by calling 888-288-9834 or schedule a visit online today.


  1. Yes, but what if it is pesticide and the degraded warning agent actually has a random odor or attaches to papers, are the side effects slightly different or the same? So far the pets are okay, but the human being has left the building.

    Comment by Nancy Kay Vocals — September 10, 2016 @ 8:48 PM

  2. Dr. Amen,
    You have clinics located in California which allows glysophate to be sprayed on athletic fields, playgrounds & public parks. Although Governor Brown signed a law to mandate that any product with glysophate in it must be so labeled. But this does not solve the problem if entities continue to be allowed to use it as they choose.

    I’d like to know if you have taken the time to contact the Governor or the legislature to testify about what you know about this product & other pesticides? It is the community of health care professionals that needs to be heard from – & not just by printing the facts on your website. It is your responsibility to take a major role in defeating the legislators who are ‘bought & who need to speak to you & see the evidence that supports our fight against Monsanto, Dow Chemical & others who are able to pump the money into the campaign accounts of legislators at both the state & Federal level.

    Your books, videos & presentations, & supplements have been well advertised. You have the money, the name, the contacts & the power to make a difference on this issue. The USDA Nutrition Expert even posts that the findings of studies about glysophate are not conclusive, It is you & your colleagues who need to attack this issue & protect America’s children & adults.

    Comment by Anna Angeline Angel Bakos — December 9, 2017 @ 10:45 AM

  3. We all have the responsibility not just medical professionals though they carry more documented influence than we the public have. Become part of the pressure for ending Roundup (glyphosate), by contributing to EWG, Environmental Defense Fund, Friends of the Earth, writing to your local representative and refusing to ever, ever buy the poisons. By pressuring schools and local governments to cease using these toxins we have some measure of influence.

    I lost a dearly loved little dog to a rare form of cancer, hemangiosarcoma, directly attributable to glyphosate sprayed in the local park where we walked every day. We are all dying from the poisons. We all can demand change.

    Comment by Diane Cartwright — December 13, 2017 @ 5:33 AM

  4. My 65 year old brother has memory loss after a heart attack that left him in a coma for weeks.. physically he is doing fine. It has been two years since his attack and he still struggles with memory..
    Do you work with or have information that help memory loss like his.

    Comment by Kim — December 13, 2017 @ 7:30 AM

  5. I very much agree. Prevention should be addressed widely. Individuals can contact you to help adjust and improve our brains. That’s great. But, when we are up against the chemical industry and millions of dollars, we are not solving the problems. The question becomes HOW CAN WE PROTECT OURSELVES FROM THESE TOXINS. The question of ‘Do I have evidence of toxins on my brain?’ doesn’t prevent them. Teach us how to prevent them from these toxins. And join us in fighting these companies that spew them out. Knowledge holds responsibility.

    Comment by Joy Pearson — December 13, 2017 @ 8:30 AM

  6. In 2008 as a firefighter I was exposed to chloirine burning in a fire for 7 hours.I did not have a tank oxygen on or a mask. I was in a support role when the firefighter come out of the fire I would take there thanks off and put new o2 tanks on. I was working on a truck that made o2 to fill the tank.I was so close to the smoke that I could not make o2 from all the smoke. 4 day after the fire I sick .Black stuff coming out my nose and ears.I had the runs and could not eat.The next 30 months I had 16 upper respiratory issue.I had 7 masses taken out of my sinuses. I have all sorts of allergies know and have hasimotto throid. Could I have damaged to my brain?

    Comment by Pat — December 14, 2017 @ 4:54 AM

  7. I had exposure for years to black mold. In my bedroom. I’m now 35 and suffering memory loss, co concentrating etc. I had a MRI and eeg done came back normal. Would those tests show if it is mold?

    Comment by Danielle g. — December 14, 2017 @ 5:25 PM

  8. Dad is gone now. He died at 87 three years ago. Before he left us he had terrible dementia. His MRIs showed a shrunken brain inside the skull. Dr was alarmed at the difference since one was done about 5 years before. Mom is still here and also has severe dementia. Family has speculated about all the spraying Dad did over the years. Roundup was used in the front & back yards for decades. Also malathione on occassion. He wore a handkerchief, not a mask. How much exposure did he have to Roundup? A huge amount, considering he did it year-round in California. Mother will leave us next. She was in & out of the house when spraying was done. What a terrible way to go.

    Comment by E. Buckingham — December 17, 2017 @ 1:13 PM

  9. We are beginning to believe that my brothers alzheimers was triggered by environmental stress. He worked for 50 yrs in large data processing centers with hundreds of large computers and stared at blinking and rolling data on black screens. It is suspicious because 2 of his former bosses also have alzheimers. Diagnosis on my brother all done by doctor assessment, no blood work, no brain scans, medicare wont pay for it. Have you heard of this before?

    Comment by Helen — January 15, 2018 @ 9:07 AM

  10. Hello Helen, there are many instances were stress and strain on the body and mind are contributing factors to conditions. We have developed a Memory Program at our clinics, and if you would like more information please visit the program page here – and contact our Care Coordinators for more information about possible treatment options and coverage, reimbursement, or financing. 888-288-9834. Thank you.

    Comment by Amen Clinics — January 16, 2018 @ 1:57 PM

  11. have you ever treated anyone exposed to chronic gas exposure I’m interesting in being tested for this who can I contact for this

    Comment by Brenda — February 17, 2018 @ 2:22 PM

  12. Hello Brenda, we do have an extensive integrative medicine program at Amen Clinics which involves labs and diagnostics necessary for many types of toxic exposure. For details on this program, please call our Care Coordinators at 888-288-9834 or complete this form to have someone reach out to you when it’s convenient – Thank you!

    Comment by Amen Clinics — February 20, 2018 @ 10:14 AM

  13. My son was tested in your Newport Beach office when he was 17 or 18. Dr. Boson sp?
    He is now 35. The diagnosis was ADD, bipolar, and injuries to brain from sports. In NJ cpuldnt find dr. Who would follow your treatment. He is very bright, wants to have a career but due to cluster headaches, depression, keep him from achieving his goal. Had addiction issues in AA for 12 years now. Has approx. 64 college credits but cluster headaches interfere with attendance. Has stopped bipolar meds, only addresses headaches at Jefferson University Headache Center w/o much success. Was very successful until junior year high school when bipolar became more pronounced.
    Isn’t working now just doing school. Health ins. Etc., very expensive for me. However, he gets SSI $523 month. But wants normal life, career and family, very stubborn to deal with. Any suggestions? I’m 71 ,retired special ed teacher… concerned and frustrated. Thank you. Your work is very impressive, at Back to school night , I would hand out your Dos & Donts for the brain to my students parents.

    Comment by Kathleen — February 21, 2018 @ 7:05 AM

  14. My husband is 66 he has had dementia 6 years, Past 8 months it’s been really bad He has been in UCLA for 2 1/2 weeks was very aggressive with me taking a seat belt off getting out the car when moving backwards, Hes going to be going to the calvet home in Los Angeles He is a veteran I really wish I could have my husband back, He can’t focus to watch TV, used to color in May and June now he just scribbles, Talk to his invisible friends, Is there any hope for him?

    Comment by Lorraine simon — March 5, 2018 @ 9:49 AM

  15. Hello Lorraine, thank you for reaching out and sharing with us. We’d love to have a Care Coordinator reach out to you to speak to your specific case directly. We will pass your information along.

    Comment by Amen Clinics — March 5, 2018 @ 10:17 AM

  16. Can any of these toxins be related to degenerative
    Nerve diseases

    Comment by Lori — March 16, 2018 @ 1:52 AM

  17. I think my daughter has lived in homes with mold. My daughter had a head injury at age 6 with a subdermal hematoma. She had a craniotomy and recovered. Ultimately played soccer in grade and middle school and rugby in high school.
    In fifth grade during a contentious divorce and custody battle, she developed subclinical mono and she was tested for food allergies and results came back with many recommendations on dietary changes. Custody changed to out of state parent at age 12. Out of state parent eliminated me from health and educational information. Out of state parent took
    her to a psychiatrist for depression at age17 without my knowledge or input who prescribed ADD medication and antidepressant. My daughter is 31 now and works in a foundry and may be exposed to toxic elements. She still suffers from anxiety and depression and rarely responds to contact from me or any family members. Does this history lead your clinicians to recommend she would be a good candidate for assessment on diagnosis and treatment? What does the range of tests consist of that you might do for someone with this kind of history? How does one get a loved one in for help when they may be reluctant? Any suggestions?

    Comment by Laura — March 16, 2018 @ 4:38 AM

  18. I went to Amen in NY and they recommended hbot which helped a lot with memory!

    Comment by Hbot!! — March 16, 2018 @ 5:01 AM

  19. Have family member having A-fib, diagnosed 2 yrs ago with mild cognitive disorder. Now searching often for words, some hallucinations, can’t remember how to make TV, etc. work, Did pest control for 26 years. Could this have any connection?

    Comment by Edith — March 16, 2018 @ 6:48 AM

  20. Hello Laura, thank you for reaching out and sharing with us. We would like to have a Care Coordinator email you to discuss these specifics further. If you’d like to reach us, you can call 888-288-9834 or submit this form.

    Comment by Amen Clinics — March 16, 2018 @ 9:29 AM

  21. Hello Edith, it’s possible that the exposure to chemicals/substances working in pest control could be a correlation. To know more, we’d suggest an in-person or phone consultation with a Integrative Medicine specialist. Our clinics offer these consultations and you can schedule one by calling 888-288-9834 to speak to one of our Care Coordinators, or you can submit this form as a request for an appointment –

    Comment by Amen Clinics — March 16, 2018 @ 9:31 AM

  22. What is hbot?

    Comment by Lucia — March 16, 2018 @ 11:25 AM

  23. Hi there!
    I know I have been exposed to mold
    After Harvey I had to move to a hotel because the rental home I lived in was damaged. To make a short story short … there was mold at the second hotel where I stayed for 4 weeks. I developed a severe eye allergy, scalp and corners of my mouth… my skin itch was unbareful. It got so bad I took Benadryl for 2 days but because I eat clean, personal care is all organic and take no medications I couldn’t handle it, the symptoms were somewhat controlled but I couldn’t think and felt in a total fog, I couldn’t work. As soon as I stopped the itch came back with a fury my skin looked and feel like a crocodile skin, swollen awful. I came back to the rental and my symptoms became more complicated, memory, trouble saying words, lethargy, one night my heart was going crazy, my normally low blood pressure would go up then down, up and down, I was terrified. I prayed for inspiration and I took magnesium which helped tremendously, my heart and my whole body relaxed and I finally fell asleep.
    Diagnosis was; maybe a mini stroke, heart reaction could be a severe allergic reaction to something. ??
    My tests came clean, I have beautiful vessels, so no stoke diagnosis, heart seemed to have settled.
    I walked out with an Rx for prednisone which I didn’t fill.
    I have followed the Amen’s courses and podcasts and use some of their supplements.
    What do you recommend supplement wise to clean my body from mold? I lost my health insurance this year and there is no way to pay for the Clinic visit and scan.

    Comment by Toni — March 16, 2018 @ 12:06 PM

  24. Hello Lucia, here is more information about Hyperbaric Oxygen Therapy (HBOT):

    Comment by Amen Clinics — March 16, 2018 @ 12:08 PM

  25. Hey there!
    I am 50 years old and suffer from brain fog, depression, social anxiety, ADD and panic attacks along with severe digestive issues and joint pain. For the first 12 years of my life, I was sexually abused, physically abused, mentally abused and emotionally abused by my father. My mother did nothing to stop the abuse. One step in front of TV he was watching would lead to a beating with whatever was in reach. I watched my 2 younger brothers be beaten over and over again by my father. We lived in poverty, a welfare family. My parents were chain smokers and I was exposed to second hand smoke for the first 18 years of my life. The house we lived in was located in an old coal mining town with lead paint and mold in the basement area. I had a few concussions from the abuse and falling down the rickety stairs to the lower level of the house. I’m working with a counselor to help with the depression and other issues. I don’t remember much from my childhood and it is a true blessing because what I do remember was horrific. Is there any help for this depression, anxiety and memory problems?

    Comment by Carol — March 16, 2018 @ 5:35 PM

  26. MRI shows structure. An EEG shows brainwave activity. You need a SPECT scan to show toxic exposure.

    Comment by Jody — March 17, 2018 @ 6:16 AM

  27. Hi Amen Clinics,

    I’m sorry to jump onto someone else’s thread, but your 1-888 number and operator-like people answering phones and questions turned me off. You have all this innovative work yet your initial contact is incredibly impersonal. It implies hoops. It does the opposite of what you’re trying to tell people you’re doing for them. Connect. Help. Listen. It feels like mass help and not personal. I would rethink this structure. Because people going through brain issues want to be heard and want connection in order to get help… not someone giving stock answers who have no real compassion.

    Comment by Jody — March 17, 2018 @ 6:26 AM

  28. My daughter has misophonia. Do y’all have any solutions to help with this?

    Comment by Michele — March 17, 2018 @ 4:06 PM

  29. I completely agree about the impersonal aspect and actually lack of knowledge. I have spent time talking with one after waiting for nearly 2 weeks for a return phone call.

    Comment by Linda — March 20, 2018 @ 7:19 PM

  30. Great post Anna Angeline.
    These medical expert’s just love to talk about it and do absolutely nothing
    They won’t even show up in court for you when you’re trying to sue your landlord

    Comment by Dina — March 21, 2018 @ 9:46 PM

  31. Danielle
    My doctor was able to recognize my exposure to mold and it’s impact on my health through the information that he was able to find by blood work called C4a.
    The Amen Clinic has a doctor that specializes in mold in their doctor roster but they won’t let you see him as part of their two scan $3500 package instead they assign you a psychotherapist even if you tell them that your apartment had mold and have documentation that you’ve been exposed to it
    This is quite shameful as they do ask you to pay an extra $400 to see that mold doctor

    Comment by Dina — March 21, 2018 @ 9:54 PM

  32. Please guide me as to how I can write to the governer for this matter.
    Thank you

    Comment by Roya Dalili — June 22, 2018 @ 7:18 PM

  33. I also had made numerous calls before I actually received a call back. I was inquiring about their services, but did not feel that the person I spoke to was very helpful or knowledgeable. It felt like a very impersonal sal s pitch. Was not what ai was needing and was very turned off by it. Seemed to be all about the money.

    Comment by Ellen Clendening — June 30, 2018 @ 9:47 PM

  34. I’m praying for you Carol. Go to your local Social Services and see if they can provide and find you counseling.

    Comment by Leyla — October 13, 2018 @ 10:10 PM

  35. Way to go Angeline.I agree 100% and I pray society and the law will hold everyone involved responsible from the doctors, politicians ,big corporations, And especially for failing on so many levels to adequately notify the public of the dangers and possible implications of what this is WAKE UP HUMANS ARE NOW ON THE ENDANGERED SPECIES LIST! Massachusetts schools are in litigation with Monsanto and neither are saying it has not significantly impaired our health they both agree that is a fact, The only argument is who is at fault Monsanto for poisoning us or Massachusetts for old outdated infrastructure


    Comment by lisa moore — December 21, 2018 @ 10:08 AM

  36. Why don’t all fire fighter’s use oxygen at all fires and spills?

    Comment by Timothy J Satta — March 8, 2019 @ 3:52 AM

  37. I lived in a condo with black mold in master bath for 15 years. Six months after moving in my energy was declining and exhaustion set in. My life as I knew it was taken. Last year diagnosed with toxic mold syndrome. My naturopath follows Shoemaker program. Check out Educate yourself. Most doctors can’t.

    Comment by Linda Brandon — March 8, 2019 @ 4:43 AM

  38. I too went through what your brother did… I didn’t even know some of my own family members ! I traced my memory loss back to any of the drugs that fall into the Class of STATINS! When I stopped taking them my memory came back !

    Comment by Robert Simpson — March 8, 2019 @ 6:45 AM

  39. Perhaps these newsletters should be proofed more thoroughly before posting them online?
    One would expect a medical professional and his staff to responsible for content and grammar.

    Comment by Theresa Coldrick — March 8, 2019 @ 8:49 AM

  40. Can Chinese Drywall have the same impact?

    Comment by B. Paul Golden — March 8, 2019 @ 9:48 AM

  41. What about the incredibly toxic wi fi and EMF from cell towers, routers, cell phones, computers, etc. etc. not to forget about the upcoming 5G (G5) that will be literally exploding everywhere? I’ve looked all through your site for real ways to deal with it and I can’t even find any of this mentioned anywhere. For years I was within 4 feet of a router as I sat all day working on my computer, always thinking that the real danger was not there, but where the signal came in, on the roof. Wrong. Suddenly I developed blistering headaches – (I’m one of the lucky ones who normally never gets them.) After looking at everything I ate, drank, did, etc. I finally moved myself far away from the router. Voila – headaches gone. But still side effects. This could be the most toxic and immediately dangerous of all of the toxic things in our world today – especially to the brain. And Amen doesn’t even mention it once. Why not? And if you really want to get scared, look at what our G5, 5G future holds. No one will be safe from them being beamed down from hundreds of satellites (already approved by our government, as I understand it). Amen is in the perfect position to help us understand how to lessen exposure and minimize the risks, when possible. And, how to detoxify from the effects of all of this bombardment. I just don’t get it. Please explain why Amen Clinics is totally silent about this. For those of you who haven’t heard about this, just do a little searching on your internet browser. thanks

    Comment by tess — March 8, 2019 @ 11:55 AM

  42. WOW..I forgot all about malathione in the 80’s..I remember being in three spray areas in one day due to work and school.
    They used to spray a few areas each day but noone thought about when you may be in all 3 or more areas! It also took the paint off
    of cars and we were told to cover the cars on the spray days.!!!! Wondering what malathione does to the body/mind. Dr.Amen?

    Comment by c nilsen — March 8, 2019 @ 1:03 PM

  43. Yes I have heard of 5G being toxic. There is a website out of France called Electric Sense that gives you free info.on a of these dangers.
    I also tried to remove the SMART METER and they said I had to pay and then pay again in 2 years when everyone will be
    forced to have one,even those who took it out previously.I also would be interested in Dr.Amen’s view.

    Comment by c nilsen — March 8, 2019 @ 1:10 PM

  44. Hi it’s great all of your solutions but your only solution you have is to come to the clinic. Many people want to come but it’s only the rich who can afford it. I have 3 that wanted to but the average person can’t afford and 2 people who went before of them experienced going to the alointments and when they got there you guys didn’t have they scheduled with no apology and just reschedule. One will never go back to you because she had such bad experience just frustrated

    Comment by Linda — March 11, 2019 @ 12:28 PM

  45. Not sure if you had your husband tested for the mutated gene. See If you go to and give them a swab, they can tell you if your husband (and kids) have this gene. The gene causes an inability to convert folic acid to methyl…folate. Key for hormone and cell function. If it comes back as yes for the gene type go to Thorne site & take the vitamin called 5-MTHF 15mg L-Methyl. It takes 3 months to work & 8 months to bring him back. It worked for my husband. He was taking depression pills which put in a catatonic state. He is now off of them completely but it sure takes a while to fix and repair the cells. They only can repair so fast I guess so shouldn’t take more than 15mg per day. Good Luck. Hope this isn’t took late. Just found this out last year. Ing

    Comment by Ingrid — April 21, 2019 @ 9:10 PM

  46. Hi Kathleen,

    My husband was diagnosed with “ADD and Major Depression Disorder” 8 years ago. To make a long story short, we paid 360 to get the gene mutation test. He was positive for the gene T667C. Some people with this mutated gene, at a certain age, can’t convert folic acid to Methyol……folate which is vital to cell and hormone production for the brain to function properly. The depression pills weren’t reaching his brain because of this conversion problem which is genetic. If the test comes back as yes for one of the two gene mutations, take the vitamin Thorne L-Methyol…folate 15mg. It is $54 for 30 pills and is over the counter. It took 3 months to work, around 6 months you get angry because you are getting the medication so cut his medication in half and by 8 months get him off the depression medications completely. (He will know when) You also need to drink G2 something with electrolytes with this vitamin. Our doc. treated the symptoms not the cause. Medical doc. are not educated on this topic. They just want you to come back every month and give you pills that make you sicker and sicker. It is very sad. Hope you get your son back. I have my husband back but it was an 8 year fight going to doc after doc. His Doc. finally pulled him off this Abilify after he got diabetes and gastro paresis and I said get him off this pill now! Once the test came back, he gave us folic acid when it says right on the test “reduced folic acid conversion” They are NOT the same thing. They can’t convert the folic acide to Methyol. so they need the L folate directly. You need to really take over your sons healthcare. He is too sick to do it. Doesn’t matter if he is 35. My husband is 48 now and was way too out of it to help himself. I barely made it thru myself. I thought my husband had a year left he looked so bad. I wish you the best and hope you get this reply. It is really important that you hear me. I bet your son has the same gene as my husband. Additionally, the general doc will say after a year to stop the folate. You can’t stop taking it with this gene mutation. Luckly our dumb Phyc doc knew something useful. This vitamin is for life. Eat also broccoli and asparagus with the vitamin since they are both the highest in this direct folate. (My husband was also a quarterback in high school and we thought the same thing. I had to write. I have a comment on the Thorne site also. You will see it. Good luck with your son.

    Comment by Gene Mutation C677T is the cause of depression, doctors are treating the symptom! — April 21, 2019 @ 10:35 PM

  47. Please read my comment to Kathleen. The gene mutation also can cause schizophrenia too if you look on the site I would just give him the vitamin every day if I were you. I would not even have him tested. My husband’s mom also has dementia. I think my husband got the gene from her and he was going to get dementia soon. He is only 48! Also, see phycology today site. That Doc. knew about this issue in 2010. I don’t think these phyc doctors believe in tests of any kind from what he says. He’s a doctor.

    This stuff these people are selling is most likely what I noted. The best place is the Apothecary near you. They charge like 400 for blood work and a review. Next go to your general doc to confirm what they say and if it is okay to do what they suggest. Charging 3500 for what this Amen Clinic thing says is horrific. Our health care system working for who?? How do these companies take advantage of others that have loved ones that are really sick and need real help without charging them an unfair sum and don’t even help them! We don’t need this kind of care. Call your governor today and tell them to get on top of this urgent health care mess and control pricing with all doctors.

    Comment by Lorraine — April 21, 2019 @ 10:53 PM

  48. Five years ago I was taking a diuretic for excess fluid in my body, which caused leg cramps. I was given potassium supplement to help. However, the diuretic ran out of stock at the pharmacy and I was inadvertently still taking the potassium. I have bad knees, and at one point they started getting weaker and could not walk on one of them, so I was at home from work. by the time I would be convinced to go emergency I was drifting in and out of things. The doctor said I was very close to death when he treated me. After that I had a month of no memory, followed by many months of mental recovery. Here is is 5 years later and my memory is much better, the only thing I have trouble with is nouns (peoples names, places names). I always remember them at some point, but it can take a few minutes.

    Given the above circumstances, is this something that can be helped?

    Thank you.

    Comment by Philip — November 8, 2019 @ 12:21 PM

  49. I have a client who, while in the military, was exposed to a sever dose of radar-microwave-radiation. He has multiple issues among them he is unable to sleep without "medication" and only for 2-3 hrs at a time… The VA has no clue… do you ???

    Comment by Edward Sibley — October 14, 2022 @ 8:15 AM

  50. My husband and I both are having memory loss issues (mostly long term) and we are both in our 50's. (I'm 51. He's 56)

    I've been suffering from various auto immuno/Lupus type and other symptoms, and I have been pretty much bedridden with extreme fatigue, weakness, & chronic pain.

    I have poor circulation with a all over grey skin colour at times, and episodes when my toes most of my feet turn a very dark purple/black. At times this also will occur up my left leg, fading to a blue/grey up to my thigh, I also get palpitations and Tachycardia and have Hypertension.

    I have had lifelong severe asthma, and for the past 8yrs have suffered with constant sinus infections/severe sinus disease, (Dx with Samter’s triad in 2018).

    I've had joint and muscle pains for most of my life, but as an adult it has worsened significantly, and I have now developed a severe, burning pain that occurs in various locations all along my spine, (mostly when standing), but cervical pain is constant.

    I have numbness/tingling/ weakness intermittently in hands, feet and also patches of the same, in areas of my thighs, upper arms, & various areas of my face.

    I have trouble keeping my balance, with sudden feeling like ive been pushed over, making me stumble. I always feel motion sickness, like I'm on a swaying boat or like the ground is unstable. Elevators, or movement under my feet will cause hours of nausea. I have a vibrating feeling, like I'm in a vehicle with a motor running. And, (this one is going to sound like im insane, but its hard to explain a odd sensation in words, but I have horrible episodes of strobe like, shivering, vibrating, kind of feeling inside of my head! (Often triggered by loud noises, (such as voices), high stress that raises my bp/hr, or even the vibration of my own voice in my head, can set it off at times.) I suffer from horrible tinnitus, low frequency hearing loss eye pressure & pain, blurred & double vision, head aches, and those may be caused by a positively diagnosed intermittent, spontaneous cranial sinus csf leak that was diagnosed in 2018, but yet to be treated.

    I've had this leak from my nose, and previously from my ear, for many, many years prior to it being diagnosed. And prior to the development of my sinus disease. (It isnt the cause of my csf leak)

    I also have 2 small cervical cord syrinx in my spinal cord, and a severely compressed, deformed Medulla brain stem from a twisted enlarged Vertebrobasilar artery, but the neurologists Ive seen here in BC Canada, all say that these are not the causes of my symptoms.

    I'm not sure they are right tbh. Its probably a lot cheaper on the medical system here, to not have a diagnosis that may require brainstem decompression prior to a csf leak patch. Im not a Dr, but common sense suspects that maybe the brainstem was being pushed over to possibly blocked the regular flow of csf, causing high icp until I sprung a leak! (And possibly created those syrinx in my cervical spinal cord as well. Aka "The water hammer effect". Look it up with causes of syringomyelia. )

    But I cannot get in front of a qualified neurologist since my csf leak diagnosis to have them review my imaging. Considering that my horrible "kill me now" migraines vanished shortly after my "leaky" ear & nose started, it kinda makes sense, right? (I'm not sure I want that "pressure relief valve" in my skull base patched until I know for sure! Or am I crazy?)

    I also have other typical autoimmune type symptoms such as hair thinning, dry skin with raised waxy lesions on my arms and legs, dry mouth & eyes.

    My digestion is sluggish, and I can get nausea from a lot of foods, especially meats and proteins.

    Believe it or not, I'm sure I have probably missed a lot of my symptoms. But this is enough listed im sure! Lol I need room to tell my husband's story:

    My husband was always the physically healthy one, who would regularly go to the gym and worked as a Paramedic for many years, until out of the blue, after a particularly horrible, and very sad, suicide call. It wasn't, by a long shot, wasn't the worst call he'd had over the 30 years he worked as a paramedic, but as they say about straws and camel's backs, he got cold-cocked with severe, debilitating ptsd.

    After a lot of medications, various therapies, and many attempts over the years to try to return to the job that he loved so much, he was recently devistated to be told that he would be put on permanent disability until his retirement.

    I'm not sure if it was stress, but since his PTSD diagnosis in 2014, he went from a fit, healthy weighting, non-smoking, non-drinking, non-drug using man, to not only being diagnosed with type 2 diabetes, but also high chlorestorol, and problems with his thyroid.

    THEN we were SHOCKED when a few years ago, he had to urgently get open heart surgery for 5 bypasses!

    Now, on top of developing a severe tremor when using fine motor skills, cognitive troubles, slow thinking, a bit of a shuffling walk, as well as that memory loss I started this story with, he also has developed a lot of similar symptoms to mine.
    Including what looks suspiciously looks like a cranial CSF leak! He has a very familiar looking clear watery fluid that he didnt have before, flowing from his nose! (Though he has not had a beta2 transferrin test to confirm this yet.)

    I am now wondering if we were exposed to something. Is there something environmental that can cause CSF Rhinorrhea?

    There was some dark stains found on the wooden beams, during the remediation process (prior to the sale of our old home) of some vermiculite insulation that was found in our attic, that may, or may not have been, previous mold growth, but this wasn't confirmed.

    We both had previously worked in a pulp and paper mill, but used the proper safety masks if and when there was any issues with unsafe gas levels. Though I was actually born on the mill site of another Pulp and Paper Mill (a Kraft mill) in 1971.

    There wasn't many regulations back at that time. The fact that babies were permitted to be born on, let alone a hospital to be built on the middle of a mill site, attests to that fact!

    The ocean waters for many miles around this Mill were dead. Very dead. Not even a small crab, or barnacle, even sea weed could be found on those beaches, until long after environmental regulations were introduced in the decades after I was born.

    Who knows what health problems came from that? Records were not kept. My father who worked at both Mills, died of pancreatic cancer in 2015. My Grandmother died around 1993 from lung cancer. They both were born in the same small Mill site hospital as I was.

    But my husband wasn't.

    My husband was raised near the other pulp and paper mill. And as with my childhood, he also wasn't even aware of the stink of the mill that hit visitor's nostrils hard, as they drove into, (or through) the town at the end of narrowed Pacific ocean Sound in Southern BC.

    Could it be the pollution of a childhood filled with who knows how many exposures to Mill "oopsies"?

    Could it be from those black "stains" in our attic?

    Maybe from using the infamous villianized Round-up on those invincible Broom brushes on our acreage that just wouldn't die?

    But considering how rare a Cranial CSF leak is, how could we both have it? (Though my husband's hasn't been confirmed for sure.)

    I haven't even got into the symptoms that our children have yet. (One of them diagnosed with possible schizophrenia. Others with other similar symptoms to mine. None of us are as healthy as we should be. )

    Does anything ring any bells? I'd love to have some answers, but under our health system, they don't usually go above and beyond. As with most not for profit systems, they do the minimum, & most cost effective, at most times, sadly.

    And I cannot find any studies about the long term effects of prenatal/infant exposure, or being raised near, and/or working at or near a pulp mill. (Or if the skull base could be thinner in those of the same?)

    If you read all the way to the end. Thank you so very very much. I don't get listened to very often. I guess another symptom I didn't mention is my ADHD and my tendency to write far too much! (But that could be psychological symptoms to being sick, bedbound and having little contact to people outside of my immediate family for well over a decade now.)

    Comment by A Harley — June 26, 2023 @ 7:38 PM

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