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Multiple Chemical Sensitivities and Electric-Hypersensitivity
Posted: 20 August 2015 09:55 AM   [ Ignore ]  
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Hello, I’m new to the forum. 

I was just tested for dysautonomia, yesterday.  I most certainly have symptoms of tachycardia, almost fainting, nausea, acid reflux, brain fog, etc, as well as other seemingly neurological symptoms, but my triggers seem to be different.  I generally have energy, and mostly don’t notice symptoms from simply standing up from a seated position….(though the tilt table test said otherwise).  My symptoms are triggered from environmental stimuli such as cell phone radiation, WIFI radiation, perfumes, air fresheners, and even eating large meals.  I have developed strong sensitivities to foods, meds, odors, etc.  I’ve been motion sick for my whole life, and recently have become hyper-sensitive to LED lighting, (which I found out strobes and not evident to the naked eye.)

I have found some relief working with neural-linguistic programming and using acu-pressure.  I also do some Qigong, everyday, which seems to be of great help. 

Am I alone in how I am triggered into symptoms?  Is this still considered dysautonomia or POTS, or could it be that I have dysautonomia AND sensitivities?  My intuition is telling me that it is all the same. 

Thanks!
Syrena

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Posted: 20 August 2015 10:06 AM   [ Ignore ]   [ # 1 ]  
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Hello. : )

While I have not been tested for dysautonomia just yet, I do share some similarities with you. As you, my symptoms are typically not triggered with a change in positions (although this can happen, but typically an the end of a day), but are either present constantly, or are triggered by: eating large meals/specific foods (e.g. a large amount of orange juice), moving for too long, increased humidity, and amount/type of light I am expose to (sunlight seems to be worse than most artificial lights). These are the triggers. Some of the symptoms are: brain fog (pretty much constant), dizziness (caused mostly by eating too much fruit), fatigue (constant, and increased with exposure to the sunlight). And there are some other symptoms, such as retrograde ejaculation, that are constant.

So, it is not exactly like your case, but there is some overlap.

While antihistamines do not help me at all, they might help you, as you might be suffering from a mast cell disorder, which is common in EDS, and has an intersection with dysautonomia. For example, you might benefit from checking out this video: https://www.youtube.com/watch?v=Owtt8NO7ahU .

Hope that helps!

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Posted: 20 August 2015 12:11 PM   [ Ignore ]   [ # 2 ]  
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Thank you.  I will check that out.  I don’t know what EDS is.  I have heard of Mast Cell Disorder, but using the anti-histamines didn’t help much.  The doctor I had, years ago, thought it might be something to help me, but I was getting worse even on those.  I think you mean the H2 anti-histamines, correct?  I became allergic to benedryl, a couple of years ago, which I believe is H1.

I appreciate the reply and will look into it further. 

Syrena

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Posted: 20 August 2015 12:46 PM   [ Ignore ]   [ # 3 ]  
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EDS is short for Ehler-Danlos syndrome, which is the main topic behind this forum, I believe. : )

I am not a medical professional, nor do I know much about antihistamines, as I do not need them, so I cannot give you much advice. I do know that some people with Mast Cell Disorder respond only to specific antihistamines.

Do you have Ehler-Danlos syndrome? The creator of this forum is Dr Diana, and she might be helpful with your problem. Here’s one of her videos: https://www.youtube.com/watch?v=096JbcWLW5c .

Best wishes!

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Posted: 20 August 2015 12:58 PM   [ Ignore ]   [ # 4 ]  
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Thank you.  I thought that this forum was for dysautonomia and POTS.  Sorry if I posted this in the wrong place. 

I have seen a couple of Dr. Diana’s videos on Youtube, which is why I came here.

No I do not have EDS, as far as I can tell.  Thanks again for the reply. I’ll have to see if there is a more appropriate place to post my question.  For anyone who is interested, I did find this link, where it is mentioned that some people with POTS do report having Multiple Chemical Sensitivity and Light Hyper-Sensitivities. 
http://www.dinet.org/index.php/information-resources/pots-place/pots-symptoms

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Posted: 20 August 2015 01:01 PM   [ Ignore ]   [ # 5 ]  
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Frost - 20 August 2015 12:46 PM

EDS is short for Ehler-Danlos syndrome, which is the main topic behind this forum, I believe. : )

Best wishes!

This is the POTS section of the forum, actually.  So, happy to report it is in the correct location.  Thank you, again for your reply.  I watched parts of the video you posted.  It is interesting, and there may be some Mast Cell issues, but I wonder if they are triggered by an autonomic nervous system issue?  I guess I have more learning to do.

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Posted: 21 August 2015 12:05 PM   [ Ignore ]   [ # 6 ]  
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Hello friends! Just to clarify, this forum is designed for folks with “invisible illnesses”—including but not limited to Chronic Fatigue Syndrome, POTS, Dysautonomia, Chronic Lyme, EDS, gastroparesis and others. We see a fair amount of EDS folks popping on because many EDS folks develop POTS and because my kids and I all have EDS (and suffered from POTS). Does that help? All invisible illnesses are welcome! We included MS in many of our studies and have some thoughts for those folks, too. Big hug,

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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Posted: 21 August 2015 02:41 PM   [ Ignore ]   [ # 7 ]  
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Dr. Diana - 21 August 2015 12:05 PM

Hello friends! Just to clarify, this forum is designed for folks with “invisible illnesses”—including but not limited to Chronic Fatigue Syndrome, POTS, Dysautonomia, Chronic Lyme, EDS, gastroparesis and others. We see a fair amount of EDS folks popping on because many EDS folks develop POTS and because my kids and I all have EDS (and suffered from POTS). Does that help? All invisible illnesses are welcome! We included MS in many of our studies and have some thoughts for those folks, too. Big hug,

Thank you, Dr. Diana!  Would you be able to shed some light on my original question in this thread?  I appreciate all that you are providing, here, and on Youtube. 

Blessings!
Syrena

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Posted: 22 August 2015 08:37 AM   [ Ignore ]   [ # 8 ]  
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It’s a guess, but sensitivities appear to exacerbate many of us. Allergies, sensitivities and infections are not our friends. wink

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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Posted: 22 August 2015 10:14 AM   [ Ignore ]   [ # 9 ]  
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Thank you.  It seems that any kind of stimulation is not my friend.  Even positive over-stimulation sets off symptoms.  I had the ANS testing on Wednesday, and now (Saturday), I’m still battling with a feeling of over-stimulation and symptoms.  Sheeesh!

Blessings!
Syrena

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