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Old 06-22-2010, 07:40 AM #11
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Thanks. You are so sweet. I do listen to music with ear phones on. Sometimes I can tolerate that and it is a good distraction other times it irritates me. The fan for me is key at bed time or when resting. Without one I can't even settle down. The type of noise that is abrupt or startles me is much worse then a consistent and one that I control. I have no patience for other peoples noice. That is why I hate where I live now and am moving to a community that is older people so it maybe will be more quiet. Someone here mentioned I think some kind of head set too. I also thought of something else. Some people's brain can get used to things where they don't notice it for me that is not the case. I tend to focus on it more. I remember even with my eyes and the floaters they said your brain once you get used to them won't notice it as much. Not true for me. It is like my brain processes things extra. I was joking and it is not funny but one has to keep a sense of humor sometimes that my legs are not working as well to walk,my eyes don't see as well,yet my hearing is like a dog. Hope you get relief and find what works for you.
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Old 06-22-2010, 08:59 AM #12
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Hi Deb and Daniella!

Wow, Deb! You see..these changes are so drastic sometimes, aren't they?
You have had 5 children around..and lost of gatherings with even more children, noise and surprises of all types, etc.
So... how does this happen to us?

You are right about the central air. We have a hot air heating system and could probably connect the central air rather easily. I am concerned about what may be in the duct system, as there was an owner before us. I cover some of the ducts (in the winter) with a filtering material. I could do that with central air, too. I should get an estimate on getting that done.
(We did not expect to be here another year, so did not do it in prep for this year. Have been tied up with a terminally ill family member and have not attended to everything else and now.... the heat and humidity has arrived!)

Someone, was it Mere, had mentioned migraine? That's always a possibility.
I don't always have any other migraine-like sx though. I have had all kinds of migraines and variants/equivalents. It is a possiblity.

[During my worst years of migraine, we had eventualy discovered I had positive antiphopholipid antibodies. The only way I could get relief from crippling daily migraines was to use warfarin (anticoagulant). I had then found that when I had stopped a particular med, the antibodies had disappeared. They had appeared after starting a med. They disappeared upon stopping the med; yet, the prescribing physician would never admit there might be a relationship there. I had also found literature on this same med causing SFN in long term use. My neuropathy was worsening, yet again. I had brought the SFN reference to the prescribing doctor, as she was referring me out for SFN consult again, and she could only say... "That effect is rare." Hello? The neurologist was interested in the article I had found on this and thought it was a viable study. I'd dumped the med, calmed the neuropathy and eliminated the antibodies. Also dumped the doctor. ]

I'd had two patches of demyelination in my brain MRI and they thought was this was from severe migraine. I hear other docs now scoff at that assessment now. (???) After all of these years of hunting for the cause of all of this, I am tired of listening to doctors. It has not been fruitful to listen to them. I may have nerve issue when I come in the door, yet I am much worse off after they get done with me. Everytime I have managed to heal the SFN, I have stayed away from the doctors for a year or two. They then ask me..how did you do that? (I am also tired of them insisting upon drugs that prove to further exacerbate the neuropathy for me.)

Yes, Daniella, in the Fibro threads, there is a post about the Bose white noise head set, I think? I would not be able to take a noisy neigborhood/setting right now. I was glad to move back out of the big city!
LOL! I am glad you are moving to a quieter setting.
You have great canine hearing? Me, too, I could keep up with my G. Shepherd! She and I could hear the same things.... others around us could not. You are right, I know my brain does not filter the background noise well. Others will sit in the same room with me. I am overwhelmed by the noise and they do not even hear it. It's often so overwhelming!

Is noise sensitivity related to PN?
Great question.

I have found many people with herperacusis in various forums about autoimmune conditions and/or autoimmune conditions that can also have an effect upon the CNS and/or the PNS.

Or is it increasing in the population in general, as in a form of an adult onset sensory integration condition?
There seems to be a lot of it! Maybe it it the company I keep. LOL!

I hope everyone has a joyous day!
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Old 06-22-2010, 05:40 PM #13
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Quote:
Originally Posted by DejaVu View Post
Hi Mere!

Once the heat hits me and I am a neuro. mess, it can take several hours to a few days of being "cool" to straighten out again. In the meantime, I am good for nothing. Once the heat/humidity hits my nervous system, I am truly incapacitated.

The last time I was working on strengthening, the physical therapist would put ice on my neck and spine as soon as I was finished, to try to reduce any temp increase.

Some summers have been worse than others. They have all been a challenge. I seem to get better and we also see healing in the sfn biopsies, etc. I am repeatedly "hit" with acute exacerbations, which include frank nerve damage. Too often, there has been a medication involved. Now that we are on to that and my newest neuro has seen it for himself, we may get somewhere? Yet, it is also well over 20 years later and I now have deficits that do not seem to "heal." I haven't given up; yet, I do realize that after awhile, there will be some chronic deficits.

Do sudden loud sounds really startle you?
Sometimes, I feel like I am going to drop to the floor.
I suddenly get very weak and think I am going to hit the floor!
It vibrates through the core of my being.

It is all still all a "mystery." Like so many other stories here.

Take care, Mere!
I have been feeling terrible since the humidity hit... I live near Annapolis - close to Wash, D.C. and it has been in the high 90's with total saturation. It will probably be like this for the remainder of the summer. I am so tired of the heat and humidity. I really can't handle it anymore - after years of living in this area. I also take a long time to cool down. About 10 minutes for every one minute hot.

And yes, loud noises do startle me. I feel like my third cat... the one that is paranoid about everything. Always jumping with unexpected noise.

I really feel that it is the dysautonomia and too many circulating hormones like adrenaline in my body. I had a bad flare about three weeks ago and I just can't seem to shake it.

Hope you feel better.

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Old 06-22-2010, 06:40 PM #14
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Hi Mere!

Wow!
That is a lot of heat and humidity!
I hope you can stay as cool as possible!

I would agree there's much that goes on with dysautonomia.
None of it is fun!
I really do think you have hit the bulls-eye on this.

What can we all do about the noise sensitiviy caused by dysautonomia?
I know a few docs that would prescribe some heavy duty sedatives for this problem. I refuse them, as there are too many potential risks and I feel there has to be a healthier way to handle some of our issues. Are there some things we can do to help?

I have found the ionic fizz calcium has calmed my nervous system a bit already. I will know more in a few days.

Why can't we take a similar approach to the cietray/supplement approaches often used in ADD, Sensory Integration, and maybe in Tourette's, etc.?

Other suggestions for those suffering with this or similar issues?

Stay cool, Mere!

Many Blessings to All!
~DejaVu
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Old 06-22-2010, 07:28 PM #15
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Yeah, I raised 5 kids, always had other kids around, and now jump at every noise. I live 800 miles from my family now, and yup, miss them. With 10 grandkids, when we are all together, the noise is a bit much!

I have ringing in my ears all the time, and I have learned to ignore it most of the time. Amazing huh?

I do think central AC would work very well for you. My parents have it and you never hear a thing. If you are using your heating system in the winter, then there shouldnt be anything in it that can cause trouble in the summer either.
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We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!
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Old 06-22-2010, 07:45 PM #16
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Hey Deb!
I see you are feeling "angelic!" Wow!
What does that feel like?

You are right! We have closed many of the ducts in the winter, yet I can't imagine there would be a huge issue. I can use the dust filtering material either way on the registers.

My husband has been working on the window A/C models and cannot get the vibration to stop! He has been working on it for hours now...poor guy!
I had asked him to quite quite awhile ago, as he has already worked many hours today! He is really liking your suggestion right now Deb!

Wow, Deb...you must miss the kids and the grandkids terribly!
800 miles is a long distance!

My ears ring now and then.
I am not sure how anyone stands them ringing all of the time?

My Best to You and to ALL of Yours!
~DejaVu
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Old 06-22-2010, 09:48 PM #17
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My ears ring all my waking hours, so I am sure they ring while I sleep.

I'm sure your hubby is liking my idea about the AC! I'm sure it doesn't cost more to use one unit over several window units either.

Yup, I miss my kids and grandkids, going to see them in about 6 weeks!
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We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!
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Old 06-23-2010, 03:52 AM #18
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WOW! I "thought" I would be able to relate to this thread. "NOT!" You guys are way too deep for me on this subject reading stuff I'd never heard of and understanding very little.

I can share relating to over stimulation with sensory information overload. I notice when I leave the security and comfort of my home and to go Walmart, Costco, and mall, grouping of people like church, my symptoms go into high gear. I experience a majority of the symptom DejaVu speaks of in addition to disorientation, confusion, imbalance even sitting on my scooter.

Allow me to provide a visual for you. While my wife and I were watching the final battle scene in Avatar, on his worse day without meds, I would make Michael J. Fox look like he was in stasis and frozen in time. My wife will actually move one seat away. I'm assuming she is in fear of her life due to the flailing arms and legs.
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Old 06-23-2010, 05:25 AM #19
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I find movie theaters way too loud for me now that I am older.

Also I cannot tolerate the ear buds from my MP3 player for long.
My brain sort of starts "screaming" turn it off!

I however can listen to music if I plug the MP3 into a boombox, and I like music in the car. I CANNOT however come to this board or type while music is playing on the computer, like some people. It seems to affect my ability to form thoughts and type them out. I can however, draw and do art work, while music is playing--and it is often helpful!

I think pain signals just scramble your brain somehow.Loud fast moving booming movies, are out of my sphere now. The first 3 Star Wars with Darth Vader's rise to power, with all the wars and crashing around I can only stand for about 20 minutes!

Pain wears me out and makes me tired. Noise just tires me out faster!
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Old 06-23-2010, 06:09 AM #20
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Deja I think you mentioned something for me too about being overwhelmed. I don't enjoy a lot going on and like a low key environment which noise does not represent to me. I know for me it is very key to keep calm and mellow if that is possible through pain. For air I could never tolerate a window unit. Well I live in South Florida but even with my air vents they are directed in a certain way so it does not hit me hard or my pain increases. I have been also mentioned migraines cause of my eye pain as well as ear pain but I dont think I have them. My ear pain is separate from my noise sensitivity.
Darlin 10 grandkids and 5 kids. Wow. I am an only child and single as an adult right now. I come from a background of quiet so I think that has something to do with it too.
Mrs D when you go to the movies make sure to sit in the middle not on the edges cause that is where the speaker is. I used to sit on the end so I could get out easier but the sound is too loud. Sometimes for me music ear phones help and sometimes they bother. So I try to go with the flow.
Gosh looking back at this and what I wrote really makes me feel like I am falling apart.
Hang in there all
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