Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 01-04-2013, 10:07 AM #1
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Default ringing in the ears

I have tinnitus which started last nite while playing a game on my ipad which had no sound. but i was getting to obsessed with the game and my head was feeling weird then i notices the hissing in my ears. Its so annoying...any thoughts??

debbie
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Old 01-04-2013, 11:04 AM #2
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This could be vertigo. It could be inner ear related, or not. It has happened to me several times over the years, and I have had several falls, so be VERY careful going down stairs and in the shower. Mine was not inner ear related. It always seems to occur when my body is overloaded with a production of lymph. (ANYONE else have that fun little problem as well???) It was definitely more severe and prolonged in the first 3 or 4 years.

Many normal people get inner ear related vertigo. It takes about an hour to be tested by a specialist. My ear, nose and throat doc set it up for me, and the test didn't have any worrisome components regarding flaring my RSD.

You DID just start the low dose Naltrexone, and you seem to frequently have bad reactions/side effects to most meds, correct? It could be that as well.

One last thought, I'm very hypersensitive to light and noise (and vibrations of course.) So much so, that I get headaches and my pain increases when I watch tv--especially the commercials themselves. And I couldn't be anywhere near my son when he'd play video games. I'm not sure how rare this component of RSD is, but I did research after a few docs looked at me oddly and found that I wasn't the only one (or crazy)... For me this developed after I had a Radio Frequency Neurotomy. I find the less stimulating my environment, the better I feel. When I flare, I turn off my lights, put on soothing instrumental music, and take a warm bath with Epsom Salts, thus removing as much external stimuli as possible. And I spend much of my time reading my Nook so that I don't start to flare... Even the little external flashing lights on my laptop bother me, so it takes very little to set me off. This is why I limit my exposure in public as much as possible, as well.

Last edited by LIT LOVE; 01-04-2013 at 11:10 AM. Reason: Added a bit more.
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Old 01-05-2013, 06:05 AM #3
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Default Tinnitus

Hi there.

With due respect to LL, I'm pretty sure you got what I got, tinnitus, something the Wikipedia article defines as follows:
Tinnitus (pron.: /tɪˈnaɪtəs/ or /ˈtɪnɪtəs/; from the Latin word tinnītus meaning "ringing") is the perception of sound within the human ear in the absence of corresponding external sound. Tinnitus is not a disease, but a condition that can result from a wide range of underlying causes . . . .
Nor is it a surprise that anyone with RSD/CRPS would get it. Take a look at Stress and tinnitus-from bedside to bench and back, Mazurek B, Haupt H, Olze H, Szczepek AJ, Front Syst Neurosci. 2012; 6:47 - Epub 2012 Jun 11.

But, where the Wikipedia completely article falls short is in its treatment of the biomedical origins of the condition, it fails to even consider that it might be a "thalamocortical dysrhythmia," which is a hoot where the immediately preceding link goes to a Wikipedia article under that name, listing tinnitus as one of the conditions in the group! See, e.g., Thalamocortical dysrhythmia: A neurological and neuropsychiatric syndrome characterized by magnetoencephalography, Llinás RR, Ribary U, Jeanmonod D, Kronberg E, Mitra PP, Proc Natl Acad Sci U S A. 1999 Dec 21;96(26):15222-7; AND Imaging of thalamocortical dysrhythmia in neuropsychiatry, Schulman JJ, Cancro R, Lowe S, Lu F, Walton KD, Llinás RR, Front Hum Neurosci. 2011;5:69.. Epub 2011 Jul 29.

And as an added bonus, the same group at NYU, under the leadership of the esteemed Rodolfo Llinás, M.D., Ph.D., went on - eleven years after the publication of the first paper - to establish that RSD/CRPS was also a disease of thalamacortical dysrythmia! Abnormal thalamocortical activity in patients with Complex Regional Pain Syndrome (CRPS) type I, Walton KD, Dubois M, Llinás RR, Pain 2010 Jul;150(1):41-51.

A discovery - by the way - that was much to the embarrassment/consternation of the CRPS community who never saw it coming, simply because they remained naive of developments in the EEG literature. Thalamocortical dysrhythmia and chronic pain, Jones EG, Pain 2010 Jul; 150(1):4-5. Seriously, check out the second sentence of the first paragraph of this editorial in the premier journal of pain medicine:
It is a perspective that may have escaped the notice of many pain scientists and sensory physiologists.
Sadly, it remains a perspective that has been left untouched in the RSD/CRPS literature since then, probably because it's inconsistent with the skill sets of the CRPS research community, with its predominantly biomolecular orientation. (Enough said and citations available upon request.)

But back to the experience of tinnitus itself, I had occasionally experienced mild ringing in my ears all my life, but it became pronounced when I began to use tDCS ("anodal" or positive) stimulation on my left motor cortex, but I thought it a small price to pay for relief from the "sympathetic dysythmia" of CRPS, in my case edema around my feet and ankles and significant chest pain that was finally established as "myocardial small vessel constriction." But then, going on a couple of weeks ago, my tDCS device failed and for reasons I hope to establish when I see him in the morning, my doctor has yet to procure a replacement device. In any event, my CRPS has been in free-fall ever since and beginning a couple of days ago, the tinnitus took on a whole new life, with tracks of Hail to the Chief and the Battle Hymn of the Republic!!!

But, oddly enough, tDCS may in fact be the appropriate remedy for our tinnitus, but this time the target would be the auditory cortex, using an application referred to as "left temporal area (LTA) and bifrontal tDCS." See, e.g., Transcranial direct current stimulation in tinnitus patients: a systemic review and meta-analysis, Song JJ, Vanneste S, Van de Heyning P, De Ridder D, ScientificWorldJournal Epub 2012 Oct 17.

DEBBIE: I recall you saying that you tried it and it didn't work. Did you use it with Seromycin? The reason I ask is that I too had problems with tDCS on the first go round, but had nothing but good results after I (1) added a low dose of Seromycin (cycloSERINE) to my medication list and (2) stopped using detromethorphan (DM): turns out that DM (taken as as an NDMA-antagonist) inhibits the brain plasticity required for tDCS to be successful, while Seromycin has the opposite effect, even as it's marketed as a niche antibiotic.

Finally, and for what it's worth, it's my understanding that a "music therapy" could be under development for tinnitus, having already shown promise in small trials, arising directly from the understanding of the condition as a thalamocortical dysrhythmia. If this is of any interest, check out Music-induced cortical plasticity and lateral inhibition in the human auditory cortex as foundations for tonal tinnitus treatment, Pantev C, Okamoto H, Teismann H, Front Syst Neurosci. Epub 2012 Jun 27.

I apologize for going on so, but tinnitus is definitely your guy. Hope this is of some use. And feel better.

Mike
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Last edited by fmichael; 01-05-2013 at 08:36 PM. Reason: clarifying current labelling of Seromycin & misc. wording
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Old 01-05-2013, 10:07 AM #4
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Quote:
Originally Posted by fmichael View Post
Hi there.

With due respect to LL, I'm pretty sure you got what I got, tinnitus, something the Wikipedia article defines as follows:
Tinnitus (pron.: /tɪˈnaɪtəs/ or /ˈtɪnɪtəs/; from the Latin word tinnītus meaning "ringing") is the perception of sound within the human ear in the absence of corresponding external sound. Tinnitus is not a disease, but a condition that can result from a wide range of underlying causes . . . .
Nor is it a surprise that anyone with RSD/CRPS would get it. Take a look at Stress and tinnitus-from bedside to bench and back, Mazurek B, Haupt H, Olze H, Szczepek AJ, Front Syst Neurosci. 2012; 6:47 - Epub 2012 Jun 11.

But, where the Wikipedia completely article falls short is in its treatment of the biomedical origins of the condition, it fails to even consider that it might be a "thalamocortical dysrhythmia," which is a hoot where the immediately preceding link goes to a Wikipedia article under that name, listing tinnitus as one of the conditions in the group! See, e.g., Thalamocortical dysrhythmia: A neurological and neuropsychiatric syndrome characterized by magnetoencephalography, Llinás RR, Ribary U, Jeanmonod D, Kronberg E, Mitra PP, Proc Natl Acad Sci U S A. 1999 Dec 21;96(26):15222-7; AND Imaging of thalamocortical dysrhythmia in neuropsychiatry, Schulman JJ, Cancro R, Lowe S, Lu F, Walton KD, Llinás RR, Front Hum Neurosci. 2011;5:69.. Epub 2011 Jul 29.

And as an added bonus, the same group at NYU - under the leadership of the esteemed Rodolfo Llinás, M.D., Ph.D. - went on on eleven years later to establish that RSD/CRPS was also a disease of thalamacortical dysrythmia! Abnormal thalamocortical activity in patients with Complex Regional Pain Syndrome (CRPS) type I, Walton KD, Dubois M, Llinás RR, Pain 2010 Jul;150(1):41-51.

A discovery - by the way - that was much to the embarrassment/consternation of the CRPS community who never saw it coming, simply because they remained naive of developments in the EEG literature. Thalamocortical dysrhythmia and chronic pain, Jones EG, Pain 2010 Jul; 150(1):4-5. Seriously, check out the second sentence of the first paragraph of this editorial in the premier journal of pain medicine:
It is a perspective that may have escaped the notice of many pain scientists and sensory physiologists.
Sadly, it remains a perspective that has been left untouched in the RSD/CRPS literature since then, probably because it's inconsistent with the skill sets of the CRPS research community, with its predominantly biomolecular orientation. (Enough said and citations available upon request.)

But back to the experience of tinnitus itself, I had occasionally experienced mild ringing in my ears all my life, but it became pronounced when I began to use tDCS ("anodal" or positive) stimulation on my left motor cortex, but I thought it a small price to pay for relief from the "sympathetic dysythmia" of CRPS, in my case edema around my feet and ankles and significant chest pain that was finally established as "myocardial small vessel constriction." But then, going on a couple of weeks ago, my tDCS device failed and for reasons I hope to establish when I see him tomorrow morning, my doctor has yet to procure a replacement device. In any event, my CRPS has been in free-fall ever since and beginning a couple of days ago, the tinnitus took on a whole new life, with tracks of Hail to the Chief and the Battle Hymn of the Republic!!!

But, oddly enough, tDCS may in fact be the appropriate remedy for our tinnitus, but this time the target would be the auditory cortex, using an application referred to as "left temporal area (LTA) and bifrontal tDCS." See, e.g., Transcranial direct current stimulation in tinnitus patients: a systemic review and meta-analysis, Song JJ, Vanneste S, Van de Heyning P, De Ridder D, ScientificWorldJournal Epub 2012 Oct 17.

DEBBIE: I recall you saying that you tried it and it didn't work. Did you use it with Seromycin? The reason I ask is that I too had problems with tDCS on the first go round, but had nothing but good results after I (1) added a low dose of Seromycin (cycloSERINE) to my medication list and (2) stopped using detromethorphan (DM): turns out that DM (taken as as an NDMA-antagonist) inhibits the brain plasticity required for tDCS to be successful, while Seromycin works the other way around.

Finally, and for what it's worth, it's my understanding that a "music therapy" could be under development for tinnitus, having already shown promise in small trials, arising directly from the understanding of the condition as a thalamocortical dysrhythmia. If this is of any interest, check out Music-induced cortical plasticity and lateral inhibition in the human auditory cortex as foundations for tonal tinnitus treatment, Pantev C, Okamoto H, Teismann H, Front Syst Neurosci. Epub 2012 Jun 27.

I apologize for going on so, but tinnitus is definitely your guy. Hope this is of some use. And feel better.

Mike
Thank for all the info! I did take an antibiotic w tDCS ..still did nothing,,,I will review above
Debbie
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Old 01-05-2013, 01:32 PM #5
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fMichael's right, it's not really ringing I hear, either now that I think about it.

Debbie, do you think it was activity related, or just random?
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Old 01-06-2013, 12:08 AM #6
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Originally Posted by LIT LOVE View Post
fMichael's right, it's not really ringing I hear, either now that I think about it.

Debbie, do you think it was activity related, or just random?
I always thought my tinnitus was a function of the ole college-band days playing at one too many bars, weddings or dances that finally caught up with me. But in thinking about it, it has definitely worsened since my CRPS onset many fold, enough so, that I have had lengthly discussions about such with my PM doc. It was decided that there was a sympathetic "connection" and there was probably not much that could be done to resolve it. I have qualitatively noticed that there seems to be a reduction of the tinnitus immediately following a series of stellate ganglion blocks and a gradual return over the time between blocks. I'll have to pay more attention next time around...

After a little poking around, seems there is some association:

Kurume Med J. 1984;31(4):295-300.
Stellate ganglion block for the relief of tinnitus in vibration disease.
Matoba T, Noguchi I, Noguchi H, Sakurai T.
PMID:6543892[PubMed - indexed for MEDLINE]

Arch Otolaryngol. 1976 Jan;102(1):5-8.
Stellate ganglion blocks for idiopathic sensorineural hearing loss.
Haug O, Draper WL, Haug SA.
Abstract
Fifty-six patients, treated with a series of anesthetizing blocks of the stellate ganglion for idiopathic sudden sensorineural loss, were compared with 20 patients of similar diagnosis who were treated by other means as to amount of pure-tone gain, speech discrimination improvement, nature of symptoms, and delay in start of surgery. Seventy percent of the stellate-ganglion-block-treated patients achieved substantial hearing improvement. Only 15% to 20% of the non-stellate-ganglion-block-treated patients achieved substantial hearing improvement in discrimination or pure-tone levels. The delay time from onset of symptoms to start of stellate block therapy appears to be important. The type of tinnitus, presence or absence of vertigo, and fullness in the ear may be useful prognostic signs.

PMID:1244832[PubMed - indexed for MEDLINE]
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Old 01-06-2013, 01:07 AM #7
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Quote:
Originally Posted by Dubious View Post
I always thought my tinnitus was a function of the ole college-band days playing at one too many bars, weddings or dances that finally caught up with me. But in thinking about it, it has definitely worsened since my CRPS onset many fold, enough so, that I have had lengthly discussions about such with my PM doc. It was decided that there was a sympathetic "connection" and there was probably not much that could be done to resolve it. I have qualitatively noticed that there seems to be a reduction of the tinnitus immediately following a series of stellate ganglion blocks and a gradual return over the time between blocks. I'll have to pay more attention next time around...

After a little poking around, seems there is some association:

Kurume Med J. 1984;31(4):295-300.
Stellate ganglion block for the relief of tinnitus in vibration disease.
Matoba T, Noguchi I, Noguchi H, Sakurai T.
PMID:6543892[PubMed - indexed for MEDLINE]

Arch Otolaryngol. 1976 Jan;102(1):5-8.
Stellate ganglion blocks for idiopathic sensorineural hearing loss.
Haug O, Draper WL, Haug SA.
Abstract
Fifty-six patients, treated with a series of anesthetizing blocks of the stellate ganglion for idiopathic sudden sensorineural loss, were compared with 20 patients of similar diagnosis who were treated by other means as to amount of pure-tone gain, speech discrimination improvement, nature of symptoms, and delay in start of surgery. Seventy percent of the stellate-ganglion-block-treated patients achieved substantial hearing improvement. Only 15% to 20% of the non-stellate-ganglion-block-treated patients achieved substantial hearing improvement in discrimination or pure-tone levels. The delay time from onset of symptoms to start of stellate block therapy appears to be important. The type of tinnitus, presence or absence of vertigo, and fullness in the ear may be useful prognostic signs.

PMID:1244832[PubMed - indexed for MEDLINE]
Let's see, where've I heard that before? Wait . . . don't tell me . . . oh yeah: Efficacy of Stellate Ganglion Blockade for the Management of Type 1 Complex Regional Pain Syndrome, Ackerman WE, Zhang JM, South Med J. 2006; 99: 1084-1088.

Sounds like I best follow my own long standing advice regarding RSD/CRPS and get on this sucker ASAP! (After all, it only stands to reason.)

And THANK YOU DUBIOUS for that wake up call!!!

Mike
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Old 01-06-2013, 01:27 AM #8
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Originally Posted by fmichael View Post
Let's see, where've I heard that before? Wait . . . don't tell me . . . oh yeah: Efficacy of Stellate Ganglion Blockade for the Management of Type 1 Complex Regional Pain Syndrome, Ackerman WE, Zhang JM, South Med J. 2006; 99: 1084-1088.

Sounds like I best follow my own long standing advice regarding RSD/CRPS and get on this sucker ASAP! (After all, it only stands to reason.)

And THANK YOU DUBIOUS for that wake up call!!!

Mike
Thanks Mike, nice to finally see a supportive citation! Hope you are (relatively) well!
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Old 01-06-2013, 05:26 AM #9
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Thanks Mike, nice to finally see a supportive citation! Hope you are (relatively) well!
Hey! Not so bad, and truly, deeply, I appreciate your insight on this little connection. And yeah, feeling better at least, if still frankly somewhat frail, with a significant word recall issue that - interestingly enough - rarely occurs to me as I compose away one my own, but is manifest at once when my own mind is no longer controlling the agenda, in that thing that we call social interaction. Seriously - friggin' seriously - so long as the mind frames the rules of the conversation, it has no problems coming up with all the words it needs. Funny how that works, ain't it? (And as my wife points out, when I'm on my own, I'm otherwise able to fill in the blanks with the assistance of a search engine of some sort.)

As you inferred from my return to posting, after thinking I was going into a stack-crash on Wednesday, I managed somehow to hobble through Thursday and by Friday - Muzak and all - realized I was not as bad off as I had been the day before, which came as a pleasant relief. Especially where I was by then committed to driving into Westwood (not nearly as far off as USC and reachable by city streets nicely), then heading back to my house to pick up my son home from college, whence over the hill again for lunch with Ian, his old teacher and now my good friend, and then back home by way of reptile shop in W. LA to pick up crickets for our 12 y.o. tree frog, then come again. a normal day for healthy folks. I doable day for me on tDCS - albeit with some Schedule II support after crossing the finishing line - and a cause for celebration that I pulled it off today at all!!! So the post-tDCS CRPS rebound thing may be no more, and we're back to bo worse than the pre-tDCS "normal" - save and except the enhanced tinnitus which should hopefully be remedied by the hair of the dog that bit me, once the replacement machine comes in this week. (See, above.)

Seriously, the only thing untoward that happened this evening was not that my pain flared (and it didn't) but that I was physically spent beyond anything I could ever recall. Hence the reference to frailty. And the only thing that pulled me out of that, once it felt I was close to letting go of one last breath and not being there to catch the next one, was when I popped 4 Nirtostats and was back in the game. But more on that in another thread.

My Sat. MD appt. went well and I should have new machine by mid-week. So all things considered, I'm a lot happier than I had been a few days ago. Thanks for asking.

Mike
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