Has Anyone Here Been Diagnosed With Central Nervous System Sensitization?

Tinnitus is a processing problem with the brain. I've seen several doctors that believe my issues stem from an overal sensitization of the central nervous system.

Anyone else?

 

hi Mike34, yes my doctors seem to think the same thing, this is called fibromyalgia , and I just got some books on it and one of the side effects of it can be ringing in the ears. our nervous system goes into high alert for some reason .touching can even cause pain, I also have very sensitive neck and shoulders and up into the back of my scalp area and sides of neck too.. doctor has put me on neurotin but im only taking 100 mg. I haven't went up in dosage yet, and tizadine (muscle relaxer) when I need it, I also had Mobic from my orthopedic doctor and have been takin 1/2 of that .. afraid to take to much the epileptic meds. I took neurotin when I first got tinnitus at 300mg and I seen double so now im afraid to go up in dosage, plus it makes people gain weight.. have doctors put you on anything yet?

 

Hey Jeannie -

Fibromyalgia is one of the diagnoses you can get with central sensitization, yes. It has more to do with myofascial pain (muscle covering) than nerves though. Mine is all straight nerve pain. I was on Lyrica for a while but didn't like the side effects. I'm not on any meds right now but I'm thinking on getting on some as I'm 6 months in and not improving so far.

You should join the Neuropathic Tinnitus & Hyperacusis support group on Facebook.

 

This all sounds very interesting. I can identify with some of the same feelings/symptoms as Jeannie. I would like to learn more, because I have to admit that I am a little skeptical.
Identifying and/or naming a disorder is helpful if there is an effective treatment. It seems that in this case it is more about trying different medications to see if something is helpful?

 

thanks Mike, hope you find a medicine that will help you. don't they give epileptic meds for nerve pain?? I know fibro is nerve endings that im assuming get irritated? not real sure, since im new to fibro.. just been reading my book on it. and David.. men can get fibro as well as women . maybe talk to your doctor about it, its worth a shot, we have nothing to lose hope you guys have a decent day...

 

btw David. im from ohio too... I seen you were from Kent.

 

Jeannie,
Good to have another fellow Ohioan here! What part of the state are you from?
Also, a couple of stupid questions regarding your fibro....
1.) Do you chew gum often?
2.) Do you have any neck/spine problems?
Just curious to see if there is any correlation?

 

hi David, im from Mansfield, no gum chewing. and yes I do have spinal problems , at c5 area, bulging disc DDD and hemangioma which all docs have said wouldn't make ears ring no nerve impingment and mild bulge, neck hurt all the time though and it started ahurting a week before ears started ringing.. so im not sure.???I think maybe related but docs say not.

 

Jeannie,
We obviously aren't too far apart.
I asked about the chewing gum, because after I quit smoking several years ago I started chewing gum. Had a piece of gum in my mouth all the time, except when I was eating. Anyway, when I recently stopped chewing gum, some of the soreness in my shoulders (muscle aches) seemed to subside. I also have a C4 C5 problem. Arthritis, bone spurs and stenosis. It started with an old sports injury. I also have neck pain most of the time. So I also don't know if anything is related. I guess we are all looking for reasons. However, even if we knew the cause of our "T", that doesn't mean we could do anything about it.

 

yes we aren't to far apart. and I used to chew gum, but stopped about when all of this started, yes its bad enough to have tinnitus but also neck pain with it, I have been in PT 4 different times but its still there.. I even went to Cleveland clinic and it was a wasted trip..

 

Yeah, been to Cleveland Clinic myself and it was a wasted trip for me also. It was kinda like a cattle call. I had a 10 am appointment. I was still waiting at 1 pm and finally decided to just leave. The doctor called me at home at about 6 pm that evening to apologize. He said they were just really busy that day. I am not going back!
My neurologist really had no interest in sending me to PT. When I asked him why not, he just said it could help strengthen the muscles, but probably wouldn't do much to relieve the pain. I had taken some Vicodin, which helped, but you can't take that everyday. So I live with pain.........and "T"

 

David, did you know the Cleveland clinic has a tinnitus clinic? I called before and you went in as a group, and they let you spend like 10 minutes with each doctor then you pay im thinking 400 dollars... ? then I guess if you need sound therapy or whatever you can do that with extra money of course.. I didn't go but in desperation called about it.

 

I had no idea that they have a "T" Clinic! Do you know if insurance pays for any of the costs involved? If not, it seems like it would be a huge waste of my money! I don't mind wasting insurance company money, but not my own.
It really goes back to the fact that if you can't touch it, smell it, see it, feel it, hear it.............how the heck will anyone ever cure it? unfortunately, the least understood part of our body is our brain.

 

im not sure, I was going to pay cash, but declined. I just don't want to waste any more money either... maybe you could call them and ask about insurance...yes I know what you mean, its a very depressing thing to have...on top of other illnesses.....

 

I have frustrating tinnitus that has a cyclical nature to it, and I suppose that I have other things that are basically fibro symptoms which are also cyclical (trigger points, tension probs especially head/jaw, some exercise intolerance, etc).

I will say that when my T is bad, it is not in isolation of everything else: my whole head feels like a too-tight guitar string.

I just found this, which is dense but may be of interest:
https://ftp.utdallas.edu/~amoller/publications/344.pdf

It's a research paper, "Similarities between chronic pain and tinnitus".

 

O.K........back to the original point of this thread;
Just what is "sensitization of the central nervous system"????
Did someone make it up? Is it a real diagnosis? Is it somebody's way of explaining away "T"?
sensitization of the central nervous system....com'on

 

I'm sure you weren't trying to be snarky, but you're being pretty dismissive of a real and interesting thing which does seem like it might well be related to tinnitus in some cases.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2750819/

Maladaptive neuroplastic changes and reduced inhibition have long been called out as tinnitus culprits.

This is a process that seems to occur as part of other disease processes; so it is not a diagnosis, it is a model for explaining how unwanted changes propagate through the CNS.

 

Yes, I was being snarky. I am sorry, but I am just a little bit skeptical. There are a million unfounded theories out there. Theories are a dime a dozen. This one sounds legitimate (if you can really understand it), but until it can be practically applied in developing a viable treatment, it is just another theory!

 

Yeah, unfortunately this seems to be process understanding without (yet, anyway) any intelligent ideas about how to arrest it.

I'm getting increasingly pessimistic of drug cures, because drugs are so systemic, even if you can effect the change you want at the receptors you want in the brain structure you want to alter, there are always other effects other places. But, hopefully a better understanding of neurology will, over time, lead the way to more targeted, specific therapies.

 

Yes, I certainly agree with you on that. However, don't hold your breath while waiting for a better understanding of the related neurology........
Some day.......................maybe in the year 2215.......

 

On the one hand, I don't assume that a cure is near at hand, or live my life in the shadow of that idea -- at least, not anymore than I hold out hope that I won't suffer the same dementia my grandmother did, or any other fear like that.

On the other hand, I don't think there's any reason to be pessimistic. They can literally map the tinnitus signal arcing through various brain structures in a live human with fMRI now. That's pretty amazing, and would have seemed like impossible futuretech as recently as 25 years ago.

 

I think CNS sensitization is only partially helpful as a diagnosis.

Where did your issues begin?

 

The first thing I noticed was visual snow, then t shortly after.

 

Any idea what set all this off?

 

years of unmanaged stress, drugs, concerts? Being a premature baby and having a super sensitive CNS? It's hard to say.

 

Gotcha.

FYI I'm looking into taking Lithium Orotate to calm down my CNS.

https://video.search.yahoo.com/vide...r2=p:s,v:v&hsimp=yhsm-001&hspart=mozilla&tt=b

http://selfhacked.com/2014/02/09/the-benefits-of-lithium/

 

would neurotin help with this?(CNS)

 

This actually came up in some other reading I was doing. I was on pharma lithium when I was a teenager; the idea of taking a tiny tiny dose of it doesn't bother me. I think I will start with the 5mg capsules for a couple weeks and see what happens. I do believe that my reaction to my T will be better if I can just get my mind unstuck and "be in my body" more. I am also back to doing guided meditations.

 

someone on a benzo board I read said their (withdrawal-caused) tinnitus got much better after a fairly extreme neurontin dosing regimen... but if you look around the internet you can also find plenty of people who say neurontin caused tinnitus, so....

 

I certainly agree with getting your mind unstuck. However, I don't think it is wise to be in either your mind or body. Dealing seems to work best when we get completely out of ourselves. I can speak for myself only. I have found that when I am heavily occupied (by work or play) the "T" is not an issue. It doesn't go away, but I don't hear it. It is only when I plop down in front of the T.V. or relax in a quiet room that it becomes an issue.
That is just me...........I'm just sayin!