23 with near constant dizziness and lightheadedness.

Posted by phillipc421 @phillipc421, Thu, Feb 28 4:30pm

Hey all,

Let me begin by saying I live a healthy lifestyle (eat mostly good, exercise vigorously 5-6 times a week, etc.) Almost exactly two years ago I started getting random dizzy spells and episodes of lightheadedness. During these episodes I feel as if the floor is not stable and that I may pass out. It gets extreme and debilitates me. I have never passed out. Outside of the episodes, I have near constant disequilibrium. I describe it as dizziness but it feels as if the floor is not stable or that I may fall through it. I feel weightless in my limbs and have head pressure that goes along with this. Not all these symptoms occur together but they all occur. It is effectively ruining my life and mental health. I can no longer enjoy activities I used to once enjoy. Leaving the house is a chore, working out is a chore and leaves me feeling drained, work is hard to be focused, etc. Physical activity greatly exaggerates the condition and sometimes I cannot complete workouts.

I have seen two primary care physicians, three ENT’s, two neurologists and a neurosurgeon, two cardiologists, and an allergist. They ran multiple tests and cannot give me a reason for the way I am feeling. They found a pineal gland cyst on a brain MRI but say it has no significance. Wore an event monitor for 2 weeks and there were some PVC’s but the cardiologist assured me they were normal. Full vestibular workup done as well. Many have tried to tell me that it is all anxiety but I do not believe that is the case as these episodes arise and even the constant disequilibrium arises with no apparent trigger or when I am jut home doing nothing. I have had anxiety issues in the past but not to a degree that caused physical symptoms. I’m also suspect of this diagnoses as the sensations came out of nowhere and I was perfectly fine prior to them starting while living a much less healthy lifestyle. Also anxiety medication does not alleviate the symptoms only seems to make me not care as much. I still feel drained and weak however. I believe that my condition is causing some anxiety which is in turn making things worse, but I do not believe it is the root cause. I am able to breathe through episodes of anxiety. I have seen therapists and psychiatrists. They don’t have answers for me.

I have seen some alternative providers as I am now getting desperate. A chiropractor was helpful but did not relive symptoms, although she was the only provider I’ve seen who put a lot of effort into my case. I’ve recently seen a dentist to evaluate if anything went wrong with a wisdom teeth surgery I had a few months before my symptoms started. I only thought of this after coming across some information about “cavitations” on the internet. However there is no concrete evidence these are actually a medical issue. Upon focusing on the extraction sites, using a cone beam ct, I did show what appear to be “cavitations”. I am torn now because the dentist is saying yes it is unusual (he said it looked as if I has just had my wisdom teeth removed despite the surgery being over 2 years prior), but he does not think it would cause symptoms. Information online paints a different story. They report cavitations could definitely cause the issues I’ve been having. I just find it a strange coincidence that I do indeed have pockets in the bone where my teeth were removed and that my symptoms began not too long after my surgery. Because this is not recognized in standard dentistry, I am getting blank stares from both dentists and oral surgeons. I am debating on just asking them to cut into it to see, they are reluctant to do this. It is the only lead I have right now but I don’t know who to trust.

I feel I am too young to be feeling like this with no explanation. My vitals are fine and most doctors seem to not take me too seriously unfortunately. I do see it from their point of view but I believe that I am just one of those cases that may take more time. I did request an appointment at Mayo as a last resort but was denied.

If anyone has any insight please let me know. All comments are welcome. Thank you for taking the time to read.
Phillip

@ggacker Thanks for your replying. I had the ventibular test at the specialist office then went back to my Ear Dr who gave me the epley exercises that worked but I've noticed when I put my head backwards I have some dizziness so don't do that About a month afterwards I had to repeat the ear exercersis again to put the crystals back in place. Thank goodness for these exercersis

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Hi, sorry to hear about your dizziness and head pressure. Have you been able to resolve the issue? It has been 2 years since I had the avm rupture and last repair. I am healthy as well and have the same, head pressure and dizziness. I also have heard about dental work causing a lack of ability for connection. I get no answers from medical staff as well to try to resolve my issue with prior dental surgery before the avm rupture. There is a youtube video regarding a dentist. You may have seen this but here are the links:

Hope this helps. Let me know what you find out for your recovery.
Best of luck.

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Hi, I have had severe episodes of vertigo and dizziness for 10 years along with many other chronic medical problems do to elemental mercury toxicity poisoning by inhalation while working at a biotech company in 2010. I even get dizzy when standing by an elevator or a large copier. I have had multiple vestibular therapy sessions with no success. After 10 years of these episodes, I was finally diagnosed with multiple sclerosis. Not one time in the 10 years that I Googled things for vertigo did I ever look at symptoms for MS, because I am not in a wheelchair? Request a Visual Evoked Potential test. The reason this test was done is because after my last mini stroke in August 2018 I started getting a silver and white print in the middle of my eyes that I cannot see through. It does not hurt. It is not like a migraine. It is called Central bilateral scotoma. Good luck.

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@krissye

Hi, I have had severe episodes of vertigo and dizziness for 10 years along with many other chronic medical problems do to elemental mercury toxicity poisoning by inhalation while working at a biotech company in 2010. I even get dizzy when standing by an elevator or a large copier. I have had multiple vestibular therapy sessions with no success. After 10 years of these episodes, I was finally diagnosed with multiple sclerosis. Not one time in the 10 years that I Googled things for vertigo did I ever look at symptoms for MS, because I am not in a wheelchair? Request a Visual Evoked Potential test. The reason this test was done is because after my last mini stroke in August 2018 I started getting a silver and white print in the middle of my eyes that I cannot see through. It does not hurt. It is not like a migraine. It is called Central bilateral scotoma. Good luck.

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@krissye Have you looked into any doctors who detox heavy metals? The field of functional or environmental medicine has providers who have treatments for toxicity. You can find information at https://www.aaemonline.org/ . Right now, that website isn't working, but check back, they have a menu where you can search for a provider. This link is a provider in Dallas, TX where a lot of the pioneering work was done in this field. https://www.ehcd.com/

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@colleenyoung

Hi @phillipc421, as per your suggestion, I have moved your discussion to appear in the ENT group as well as the Brain & Nervous System group, where you'll meet other members talking about similar issues with dizziness and lightheadedness. In addition to Lioness and Lorirenee, I'd like to invite @doc3rob @nicoles @the138 and @jadillow to this discussion.

You may also be interested in these discussions:
– Chronic Subjective Dizziness-CSD https://connect.mayoclinic.org/discussion/chronic-subjective-dizziness-csd/
– Chronic dizziness and vestibular migraines https://connect.mayoclinic.org/discussion/hello-_-my-name-is-kim-i-am-33-years-old-and/
– Pineal Cyst https://connect.mayoclinic.org/discussion/pineal-cyst/
– Lightheadedness https://connect.mayoclinic.org/discussion/lightheadedness/

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I trust you know that migraines – a brain, i.e. neurological condition – can produced dizziness that can last from minutes to days and is often confused with ENT issues. (You might want to look up vertiginous or vestibular migraines). In fact, may neurological problems present with dizziness, balance problems and other symptoms that are frequently misdiagnosed as anxiety, or ENT woes.

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I would like to add this: If you have chronic dizziness, it is a good idea to thoroughly check for potential side effects of any – and I mean ANY – medications you are taking, even over the counter. And don't just rely on " oh, that's safe" or "oh, that doesn't cause dizziness." A case in point: Proton pump inhibitors, sold over the counter (Nexium, countless others.. all end in "..prozole" , i.e. omeprazole, rabeprazole) are known to cause dizziness and frank vertigo has also been reported. This is supposedly rare – 1.5 to 2 percent – but one wonders how rare it actually is since most people would not be questions by doctors about OTC heartburn drugs.

Liked by lioness

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@jenniferhunter

@phillipc421 @lioness @redhead63 Dizziness, nausea, and vertigo can be caused by a neck problem. This happened to me because of muscle spasms that moved my vertebrae out of alignment because of a spine problem. If my C1 or C2 were turned or tilted, and then I look up, it started the vertigo instantly. There are problems like Bow Hunter's Syndrome, where something like this happens from turning the head. When you look up, you can jam the back of the skull back on the spine, and if the spine is not aligned properly, it can cause issues. Some problems like this alter the blood supply to the brain by compressing the vertebral artery.

When this happened to me prior to my spine surgery, I was trying to photograph birds migrating overhead, and even though I put my head back into a normal level position, the dizziness did not stop and I could not stop myself from falling backward. My physical therapist was able to realign my spine and correct this and stopped the dizziness. It doesn't happen anymore since I had surgery for cervical stenosis. My suggestion would be to have an evaluation with a physical therapist who works with spine surgery patients to assess the proper alignment of the way the skull sits on the spine and spinal alignment.

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Hi there, don't mind me, I was intrigued by this thread because I have Chronic Sinusitis Disease and sometimes I too have dizzy spells. Such as, when I stand up or during exercise my eyesight is blurred and goes completely black for a few seconds or I lose my balance and feel disoriented, along with heart arrhythmias and a tight chest that can occur at rest and during any time (its never specific, nor has it been diagnosed as anything but stress but I'm 20 so I don't necessarily agree with that). So my thought was, have you had your thyroid checked along with hormones and blood sugar levels? After reading @jenniferhunter 's post, since you both used to be very active and fit I would try to remember any little injuries you had at a young age till now( @phillipc421 and @redhead63 ) the smallest injury may not show up unless someone is really looking for it and may show up years later with odd symptoms but no connection to anything because you never thought anything of it or remember it cuz you were so young, specifically any falls or head trauma or broken nose/fight/high school sport injuries or stress fractures. Ask your parents about any odd complaints of pain or discomfort as a child. As a toddler, I used to lay my head on the tile floor and my mother used to ask me what I was doing and I would tell her it felt cool on my hot, pounding head. I then had an MRI but it was cleared and I was sent home with no answers. To this day I'm an absolute mystery box and still have these awful migraines, chronic fatigue and what I think are pressure headaches from extreme compaction in my sinuses (so for all I know I could've had sinus problems since I was born). My ENT at Mayo, who I had met with a few times 2 years ago, wasn't even sure as to what was causing my symptoms but it was severe (I also met with 7 other primary doctors at Mayo all in different specialties). So since nothing has been determined as to what's really going on, I've decided to try pro and pre-biotics again and work on my gut health and start working with other types of treatments such as acupuncture and cryotherapy because I've heard nothing but positive outcomes from it. I've seen a holistic type of doctor in Walker, Minnesota. I think he is extremely intelligent/helpful and goes about diagnosis in a way I never knew was possible and I think it's worth a try for people who feel like there are no answers even from the best of the best! Just remember to keep an open mind and be optimistic, you never know what could be waiting behind the next door. Even if it seems super weird and unfamiliar, it never hurts to try something new, especially if it's about your health.

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@zozo101

Hi there, don't mind me, I was intrigued by this thread because I have Chronic Sinusitis Disease and sometimes I too have dizzy spells. Such as, when I stand up or during exercise my eyesight is blurred and goes completely black for a few seconds or I lose my balance and feel disoriented, along with heart arrhythmias and a tight chest that can occur at rest and during any time (its never specific, nor has it been diagnosed as anything but stress but I'm 20 so I don't necessarily agree with that). So my thought was, have you had your thyroid checked along with hormones and blood sugar levels? After reading @jenniferhunter 's post, since you both used to be very active and fit I would try to remember any little injuries you had at a young age till now( @phillipc421 and @redhead63 ) the smallest injury may not show up unless someone is really looking for it and may show up years later with odd symptoms but no connection to anything because you never thought anything of it or remember it cuz you were so young, specifically any falls or head trauma or broken nose/fight/high school sport injuries or stress fractures. Ask your parents about any odd complaints of pain or discomfort as a child. As a toddler, I used to lay my head on the tile floor and my mother used to ask me what I was doing and I would tell her it felt cool on my hot, pounding head. I then had an MRI but it was cleared and I was sent home with no answers. To this day I'm an absolute mystery box and still have these awful migraines, chronic fatigue and what I think are pressure headaches from extreme compaction in my sinuses (so for all I know I could've had sinus problems since I was born). My ENT at Mayo, who I had met with a few times 2 years ago, wasn't even sure as to what was causing my symptoms but it was severe (I also met with 7 other primary doctors at Mayo all in different specialties). So since nothing has been determined as to what's really going on, I've decided to try pro and pre-biotics again and work on my gut health and start working with other types of treatments such as acupuncture and cryotherapy because I've heard nothing but positive outcomes from it. I've seen a holistic type of doctor in Walker, Minnesota. I think he is extremely intelligent/helpful and goes about diagnosis in a way I never knew was possible and I think it's worth a try for people who feel like there are no answers even from the best of the best! Just remember to keep an open mind and be optimistic, you never know what could be waiting behind the next door. Even if it seems super weird and unfamiliar, it never hurts to try something new, especially if it's about your health.

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also if you do have someone open up your wisdom teeth cavities I'm curious to know if they accidentally made a hole in your sinuses which could be causing bacterial or fungal infection to inhabit in your cheek sinus cavities. Just a thought! I hope you all get some answers!! Having inconclusive results can be so devastating and exhausting (mentally, physically and financially), so keep fighting for yourself and stay positive 🙂

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@zozo101

Hi there, don't mind me, I was intrigued by this thread because I have Chronic Sinusitis Disease and sometimes I too have dizzy spells. Such as, when I stand up or during exercise my eyesight is blurred and goes completely black for a few seconds or I lose my balance and feel disoriented, along with heart arrhythmias and a tight chest that can occur at rest and during any time (its never specific, nor has it been diagnosed as anything but stress but I'm 20 so I don't necessarily agree with that). So my thought was, have you had your thyroid checked along with hormones and blood sugar levels? After reading @jenniferhunter 's post, since you both used to be very active and fit I would try to remember any little injuries you had at a young age till now( @phillipc421 and @redhead63 ) the smallest injury may not show up unless someone is really looking for it and may show up years later with odd symptoms but no connection to anything because you never thought anything of it or remember it cuz you were so young, specifically any falls or head trauma or broken nose/fight/high school sport injuries or stress fractures. Ask your parents about any odd complaints of pain or discomfort as a child. As a toddler, I used to lay my head on the tile floor and my mother used to ask me what I was doing and I would tell her it felt cool on my hot, pounding head. I then had an MRI but it was cleared and I was sent home with no answers. To this day I'm an absolute mystery box and still have these awful migraines, chronic fatigue and what I think are pressure headaches from extreme compaction in my sinuses (so for all I know I could've had sinus problems since I was born). My ENT at Mayo, who I had met with a few times 2 years ago, wasn't even sure as to what was causing my symptoms but it was severe (I also met with 7 other primary doctors at Mayo all in different specialties). So since nothing has been determined as to what's really going on, I've decided to try pro and pre-biotics again and work on my gut health and start working with other types of treatments such as acupuncture and cryotherapy because I've heard nothing but positive outcomes from it. I've seen a holistic type of doctor in Walker, Minnesota. I think he is extremely intelligent/helpful and goes about diagnosis in a way I never knew was possible and I think it's worth a try for people who feel like there are no answers even from the best of the best! Just remember to keep an open mind and be optimistic, you never know what could be waiting behind the next door. Even if it seems super weird and unfamiliar, it never hurts to try something new, especially if it's about your health.

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@zozo101 It sounds to me like your dizziness and vision going black on standing might be related to your heart and blood pressure. Have you consulted a doctor about that?

Standing up will cause a change, and your body has to compensate for that. At times if I stood up too quickly, it could happen to me. One of my doctors would take different blood pressure measurements while laying down, sitting or standing. The vertigo I experienced from the positional change in my neck (when the vertebrae were out of alignment) did not cause a loss of vision, instead it looked like the world was spinning.

I'm including a link about other causes of dizziness taht may be of interest.
https://trainingandrehabilitation.com/vestibular-impairment-and-its-association-to-the-neck-and-tmj/

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@jenniferhunter

@zozo101 It sounds to me like your dizziness and vision going black on standing might be related to your heart and blood pressure. Have you consulted a doctor about that?

Standing up will cause a change, and your body has to compensate for that. At times if I stood up too quickly, it could happen to me. One of my doctors would take different blood pressure measurements while laying down, sitting or standing. The vertigo I experienced from the positional change in my neck (when the vertebrae were out of alignment) did not cause a loss of vision, instead it looked like the world was spinning.

I'm including a link about other causes of dizziness taht may be of interest.
https://trainingandrehabilitation.com/vestibular-impairment-and-its-association-to-the-neck-and-tmj/

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Thank you for the thought. I wish it was the case but I do not have orthostatic hypotension currently and was never diagnosed with it in the past. My blood pressure was always being monitored by the medical team after my AVM rupture. I even had EKGs to be certain of my heart function. They did not feel my blood pressure was a concern. I have never been on medication for hypertension and always saw physicians for routine check ups. I will certainly keep it in mind. I don’t feel differently when I get up from a lying position. Thank you for bringing the thought to my attention. I don’t know if acupuncture therapy will help in my case. I have been looking to find an acupuncturist locally.

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I understand. I am much older than you, over 70 and had dizziness for over 4 years. mayoclinic a blessing, network. When I had my initial symptoms of dizziness 2015…..luckily I was attended by a physician which could focus on me(had a scribe at that hospital), and not side taxed with computers to physicians time and skill. Anyway, for an initial assessment, in a system that works off to a great start(had an initial CT to brain). Soon after that initial assessment had an emergency visit relating to dizziness and given diagnosis of BPPVC(benign paroxysmal positioning vertigo), an emergency MRI at mid night. With associated symptoms of nausea. I did later have another neurologist read my CT . Never take a blind shot in medicine, as in any profession, different dedication , skill and compassion levels. Now 2019, I been free of symptoms for about two month. During the initial period I was scouting assisted living systems, and not impressed with reward of having daily meals and waiting for the final hurrah. Anyway I was luckily, my dizziness did not tax my skills in computer research and able to drive, one reason I was scouting assisted living. During this time the level of neurological assessments and treatment are poor(in a world of medicine that has chapters in genetics and personal molecular medicine). The best for treatment is/was: dramamine(antihistamine) meclizine (antivert…a trade name more costly wasted product)…..after these failures, found good old ginger about the best product to counter my type of dizziness. I did have to use a drug for nausea(for cancer patients initially) it does work, but with any complex, new expensive drugs, be careful. ) During this period, in the matrix of research, I found a great article by Dr. Martin A. Samuels M.D. Chairman of Neurology Professor of Neurology Brigham & Woman's Hospital Harvard Medical School Dizziness, that addresses Ill defined lightheadedness. One major mistake many physicians make in diagnosis of dizziness is to sort out vertigo from syncope. Because of this problem, many physicians get lost in defining dizziness solely to vertigo(a spinning type of dizziness), which is associated with Vestibular assessments and treatments, without addressing the other neurological dimension, syncope. Finally, since I was having less problems with nausea and regular dizziness, tried my final approach(all anti hypertensive meds, have side effects of dizziness) I changed anti HTN meds from CCB(Norvas), to an ARB, it did help the final step in the battle. But as all medications, the ARB's now found to have cancer side affects, had to return to my CCD. Such is the world of medicine, people, market and ones story. Luckily Mayo provides us with a network to share our story. JIM>>>

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@jczarkowski1270

I understand. I am much older than you, over 70 and had dizziness for over 4 years. mayoclinic a blessing, network. When I had my initial symptoms of dizziness 2015…..luckily I was attended by a physician which could focus on me(had a scribe at that hospital), and not side taxed with computers to physicians time and skill. Anyway, for an initial assessment, in a system that works off to a great start(had an initial CT to brain). Soon after that initial assessment had an emergency visit relating to dizziness and given diagnosis of BPPVC(benign paroxysmal positioning vertigo), an emergency MRI at mid night. With associated symptoms of nausea. I did later have another neurologist read my CT . Never take a blind shot in medicine, as in any profession, different dedication , skill and compassion levels. Now 2019, I been free of symptoms for about two month. During the initial period I was scouting assisted living systems, and not impressed with reward of having daily meals and waiting for the final hurrah. Anyway I was luckily, my dizziness did not tax my skills in computer research and able to drive, one reason I was scouting assisted living. During this time the level of neurological assessments and treatment are poor(in a world of medicine that has chapters in genetics and personal molecular medicine). The best for treatment is/was: dramamine(antihistamine) meclizine (antivert…a trade name more costly wasted product)…..after these failures, found good old ginger about the best product to counter my type of dizziness. I did have to use a drug for nausea(for cancer patients initially) it does work, but with any complex, new expensive drugs, be careful. ) During this period, in the matrix of research, I found a great article by Dr. Martin A. Samuels M.D. Chairman of Neurology Professor of Neurology Brigham & Woman's Hospital Harvard Medical School Dizziness, that addresses Ill defined lightheadedness. One major mistake many physicians make in diagnosis of dizziness is to sort out vertigo from syncope. Because of this problem, many physicians get lost in defining dizziness solely to vertigo(a spinning type of dizziness), which is associated with Vestibular assessments and treatments, without addressing the other neurological dimension, syncope. Finally, since I was having less problems with nausea and regular dizziness, tried my final approach(all anti hypertensive meds, have side effects of dizziness) I changed anti HTN meds from CCB(Norvas), to an ARB, it did help the final step in the battle. But as all medications, the ARB's now found to have cancer side affects, had to return to my CCD. Such is the world of medicine, people, market and ones story. Luckily Mayo provides us with a network to share our story. JIM>>>

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I'm glad you are doing better. A word of caution: I am horrified at the lack of knowledge in general about anticholinergic drugs – i.e. dramamine, Benadryl, Versicare, Antivert. Not only can they cause mental confusion and memory problems but there are some researchers who believe they can precipitate dementia. And, in fact, there is no doubt in my mind that countless elders are "warehoused" with "dementia" – confused due to their anticholinergic "meds" that keep them quiet and sedated. I only mention this because people thing that OTC drugs are by definition safe. They aren't always. Along with PPIS, I predict anticholinergic drugs will eventually be looked back on as some of the biggest medical mistakes/disasters of this century. And, of course, people desperate for dizziness relief are often told to take these drugs. You can search pubmed for research. Here's a fair CNN article on the subject. https://www.cnn.com/2016/04/18/health/otc-anticholinergic-drugs-dementia/index.html

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@slynnb

I'm glad you are doing better. A word of caution: I am horrified at the lack of knowledge in general about anticholinergic drugs – i.e. dramamine, Benadryl, Versicare, Antivert. Not only can they cause mental confusion and memory problems but there are some researchers who believe they can precipitate dementia. And, in fact, there is no doubt in my mind that countless elders are "warehoused" with "dementia" – confused due to their anticholinergic "meds" that keep them quiet and sedated. I only mention this because people thing that OTC drugs are by definition safe. They aren't always. Along with PPIS, I predict anticholinergic drugs will eventually be looked back on as some of the biggest medical mistakes/disasters of this century. And, of course, people desperate for dizziness relief are often told to take these drugs. You can search pubmed for research. Here's a fair CNN article on the subject. https://www.cnn.com/2016/04/18/health/otc-anticholinergic-drugs-dementia/index.html

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@sylnnb GOOD MORNING this is a timely information Where I live we just had a program about dementia and the antihistamines are affecting our memories this was from the Dept. of Mental Health

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