A Warm Hello to All!

I imagine this topic would "fit" under many different headings here.
I had done a search and found I had participated in a thread on this topic in a different category about 11 months ago.

I am interested in discovering any nutritional/vitamin/supplement approaches to managing this problem. This aspect was not covered in the thread I had mentioned.

It's a big problem for me almost anytime; yet, it is much worse in the summer when we have to run air conditioners, fans, dehumdifiers, etc.
I really do not do well with the noise.

My noise sensitivity increases with other symptoms, currently triggered by heat/humidity. Fatigue/weakness increases from the heat/humidity. Nerve pain flares, muscles jump and twitch, tingling increases, myoclonus starts (jerks), severe muscle spasms start, vison changes, cognition is slowed, etc.
I cannot function in the heat/humdity at all. I get far too weak to stand for long, far too weak to lift a full glass of water, etc.. I do not have enough enough strength to even use my keyboard.

If I stay "cool," I have more strength and can function better.

Yet, the noise becomes intolerable. A simple air conditioner irritates my nervous system. After awhile, I cannot take it! Yet, I have to have it cool.
After a period of time, the noise will start to add to the pain, too. It feels like total sensory overload.

This is not a new issue for me. It has been a part of the whole picture for me for over 20 years now. Yet, as time goes on I find this more difficult to solve. My doctors are always willing to give me anticonvulsants to quiet the muscles/myoclonus and/or muscle relaxants (spasms), and they will prescribe more. They never hesitate to prescribe anything due to the severity. I simply cannot tolerate most of what is prescribed and many meds start an autoimmune type of a reaction with me, worsening the whole picture.

I was able to wean myself down on the number of meds I am using. My doctor was glad I did this, even though he did not suggest it at the time; he could see was I better than I had been on all of the meds. I am, overall, much better off for this. I am looking for any newer info. on calming the nervous system in alternative ways.

I did just obtain some Ionic Fizz Magnesium, named "Natural Calm" and am going to switch from Slow-Mag to this for awhile to see if it may help.

I have a nephew with a sensory integration conditon. His issues with sound, and mine, are now very similar. I did not have these issues when I was young, at all. Mine came with neurological illness later on. I had started to look at some of the supplements used for sensory integration issues, ADD, tics, etc., online.

There is a great deal of info. Lots to read and to sort. I am finding it very hard to focus with the noise and the symptoms. I am wondering if anyone can point me in a specific direction? Any suggestions?

Many thanks!
~DejaVu

People low in B6, can have hyperacusis...sound sensitivity.

I'd use the P5P brand (I use NOW company) to try to improve this. B6 and magnesium work together. P5P is the activated form of B6 (which in vitamins is not activated unless listed as so.).

50mg a day is plenty. It is not expensive either.

It is great that you got off the drugs. Check out the post here on Acupuncture. It has my evaluation so far on ribose, which is a mitochondrial supporter.
http://neurotalk.psychcentral.com/thread123731.html

Since I believe that some PN is mitochondrial damage in origin, this might help too.
http://neurotalk.psychcentral.com/thread122889.html

I am also extremely sensitive to excess noise, stimulus, lights (particularly the sodium vapor type). I thought this was part of migraine sensitivity, or perhaps my disautonomia.

I have a difficult time in home centers. The high shelves and sodium vapor lighting can really throw me into a state where I become dizzy, have double vision, feel nauseous...

I do not know how to correct it, other than to change my environment.

Mere

Thank you, MrsD!

These links are great!

I need to order the P-5-P, as I can't find it in this area at all.
Thanks for confirming the importance of this form of B6.

I do use Jarrow's D-Ribose. I was concerned, initially, about an impact upon blood glucose, too. (I am currently dx'd with glucose intolerance... which is newly diagnosed. I eat as though I am diabetic. I suspect I am diabetic at this point, which had not been the case in the past. I hope to get that totally sorted out with my doc. I need the oral GTT, as I also run hypoglycemic, so a low fasting blood glucose blood glucose does not tell the whole story in my case. (I now go too low, as well.) I have talked him into an A1C and an oral GTT.)

I like Jarrow's D-Ribose and need to take it more faithfully in this weather, etc. It does not majorly impact my blood glucose according to my meter.
The D-Ribose in one of the threads you had given a link to above. (Incase anyone wonders how the D-Ribose became a topic here...see the links from MrsD.)

My neurologist had approved COQ10 at 600mg-1000mg a day, depending upon how I am feeling. I am on the increase from the 600mg. per day. Now I am reading much more about "Ubiquinol," esp, for those of us middle-aged.
I am trying to read up to see how that translates (CoQ10 ---> Ubiquinol) as far as dose equivalence. (I use Jarrow's Q-Absorb for COQ10. I like this one.)
I have to increase it in the summer. Always.
I have used COQ10, intermittently, for over 20 years. (It was not manufactured in the U.S. When I had started taking it back then. It helped me though the summers in a major way.) I had used much less then (per day). My condition has progressed.

He also okays Acetyl L-Carnitine 1000mg.-2000mg per day when I get this impaired. I have this here; yet, really want to check and be sure this is the latest and best info. on mitochondrial treatment. He had approved this because I had suggested them two summers ago. (In other words, he did not suggest them, I did... and he was fine with them and knew the doses he was comfortable with -- in my case-- immediately. Thus, he is not a stranger to these. Other neuroloigsts would not okay them. They would use COQ10 only if they had located/proven a deficiency.)

I have had intensive vitamin/supplement regimens in the past. I am feeling it is time to reconsider, checking newer info., etc. I am rebuilding my regimen.
I used to take alpha lipoic acid, inositol and N-A-C, too. I need to find the latest info and do enough with the regimen, yet not over do the regimen.

(I recall the Enada. It did not do a thing for me. It was expensive, as well.)

I am in the process of revamping.
I guess I should make a comprehensive list.
I had wanted to immediately focus upon the constellation of sx at hand.
Thank you for your assistance.

I had taken the magnesium ionic fizz approx. 2 hours ago now and I can feel a difference in my muscles already. Even the tight spasms around my ribcage have loosened up in a major way. I hope to get things calmed down.

With Sincere Gratitude,
~DejaVu

Hi Mere!

Thanks for responding! I have been reading your posts.
Love the picture of your cat! LOL!

I understand what you are referring to. Those same places set my nervous system into a wild spin! I was never phobic or anxious in life, at all. Quite the opposite. Yet, some stimuli will have me dazed in no time.

I get tired of hearing the light bulbs and all, too.
The A/C does drown out the other noise! LOL!

I think it is best to try to change your environment if one can do so! Yet...what if one cannot? Ideally, we would get central air installed.
That is not going to happen right away.

We have bouight so many different brands, styles, etc. We have installed them diffferent ways to cut vibration and noise, etc., etc. (We may have to try the style MrsD has this year to see if it will be quieter.)

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 noise sensitivity to the extreme. If I could wear ear plugs all day I would. I used to and kept getting ear infections. I think some is that my body is very sensitive from my limbs,ear,eyes etc. Some is anxiety and with that I like peace and quiet cause it keeps me calm. When it is loud my anxiety increases and in turn I don't deal with the pain as well. I also feel anyone who hurts badly would like a quiet environment. I notice when I am calmer mentally and my pain is less physically the noise does not impact me as much. Still more then the norm. I run a fan at night which is consistent noise and seems less annoying to me then like when the air condition turns on and off. I still have that but it drowns it out. I have a noisy place where I live and am moving soon and can't wait. It is like torture now. Sorry I am not more help just that I can relate

Hi daniella!

I remember you! Always a gentle, caring voice.
Yes, the earplugs get old in a hurry, don't they?

I was just reading some about white noise.
I was reading about using white noise with headphones and drowning out other noises. I wonder how well that works. I'll be it it easy to also tire of the headset or earlpugs for the white noise, too?

No worries, daniella! This is really all about relating!
If we could not relate at all, we would not even be here.
I am sorry you suffer, yet glad you have others you can relate to!
Sometimes, there's some solace in being able to simply relate to one another's experinces!

Thanks for responding and I hope this thread yields something helpful to you, too!

Have a great day!

~DejaVu

I am really liking the ribose. It seems to settle me down, from my sometimes irritable state. When I am in pain I get grumpy.

Since I started the ribose I sleep much better too, and irritating things don't seem to intrude on me the way they can normally.

Hi MrsD!

I am so glad you had mentioned the D-Ribose in your thread link!
It really can help! I had started to use it erratically, which is not in my best interest. We had re-arranged the kitchen and the shelves, etc. I was used to seeing my main supplements right in front of me and this had reminded me to take them. When I had become scattered due to the heat exposure and then the noise, I had then temporarily forgotten to keep up with it.

I mix mine into very watered down grape juice.
I had found this helpful over this past winter.
D-Ribose really gave me some muscle strength/muscle energy I did not have otherwise! It is so sweet tasting, I was concerned about the glucose impact; however, the carb count is low in this one... and maybe in all? I barely have any grape juice in the mix, yet did this because I had read grape juice helped with absorption. (?) I have also tried it in water.
Sometimes I mix it with a dash of low sodium trace minerals (liquid).

So...yes, for me, it gives me muscle strength/energy--these are remarkable changes-- and also helps to decrease muscle pain and sometimes also decreases other sensory info, like tingling, prickling, etc, in my extremities.

This Natrual Calm (ionic fizz magnesium) is amazing! I am so thrilled with the immediate effects. All of my muscles have quieted down, are relaxed -- spasms are greatly decreased, no muscle jumping, no smaller fasciculations, myoclonus is greatly improved. I am looking forward to the full effects, after a few days of using this and adding ther P-5-P!

I hope you have a great day, MrsD!
Thanks again!
~DejaVu

I can relate to all that you are saying. I too startle so easily, any loud noises, even quiet noises behind me. At work they always say they can't believe I had 5 kids and jump at every sound. I never thought about it being connected to neuropathy.

As for your AC, could you get central AC, which only comes through your register vents...it's quiet because all the noise is outside.