[frogga]

Hiya,

I'm sorry that the promised update has taken so long! I really hope that you are all doing well and I've been thinking of you all.. both those I know and those of you I don't.

For those of you who don't know me I've had severe RSD for the past 8 years (since the age of 16) and various doctors have hmmd and haa'd over whether I've had it longer (as I also have HMS). It started in my right arm and over a period of months spread through my body and I developed severe secondary generalised dystonia. This has led to the majority of my body curling up into contractures and spasms leaving me unable to walk, feed myself, or hold my head up properly.

So.. as in my last note, I've now graduated and am (once the paperwork is sent off ) a registered psychologist. Although this being the UK it means that I can't practise as a psychologist.. I'm just registered as one. If I choose to continue going down a psychology route it's going to involve an awful lot more studying - something that both my tutors and I know I am capable of intellectually but that we feel is impossible physically (at the moment). So I'm planning on spending the next couple of months back with my mum whilst I try and get some control back over my body, get a handle on the pain, get some more medical answers to stuff that's been going on and try and get into a place where I'm well enough to get back to studying and complete my masters.

Jimmy Jo (James) (my boyfriend, who I met at uni) has moved back to my mums with me and we are trying to get a house at the moment. It's been tough moving back in with mum and my sister, but it's slowly getting there. After a lot of heart searching I've realised that I need to live close to my mum and my friends in the village where I live, for many reasons but most importantly I am now frequently bed bound (lasting up to 3 months) and so I need to have people around me who know me so that I don't get too isolated. Also, although I have a live in carer (ok, although I'm supposed to have a live in carer - but mum doesn't have enough room in her house) I get severe dystonic storms, pass out frequently and have alot of dislocations when the spasms get bad - and it is only my friends and family that are able to keep me out of hospital and over-rule carer's if I'm not well enough to make decisions on my own behalf. So, please keep your fingers crossed that we can get a house sorted out, and soon!

Unfortunately the RSD refuses to leave my body alone and I've been warned by several doctors that my body is struggling to cope with the pain (and the tablets). This is resulting in blood pressure problems, tachycardia, autonomic dysfunction etc. The RSD and dystonia now impact my lungs as my intercostal muscles keep going in to spasms - leaving me unable to breathe and a blue light ambulance ride to hospital and resus on occasion. One doctor has suggested prescribing me oxygen - but I don't want it currently. Annoyingly my throat and lungs (and mouth, stomach, kidneys etc..) hurt, well, in fact they sometimes feel like they're on fire, or like someone's plunging a knife into my chest - especially when the spasms are bad. It can be really scary sometimes - twice I've really believed I was going to die when I haven't been able to breathe and I've been given mouth to mouth more frequently than I'd like to admit. It scares all of us (especially carers that don't know me well), especially as rectal diazipam which is normally used to sedate me if the pain or spasms become unmanageable, can also cause breathing problems (at the dose used for sedation at home). It's something I'm determined to learn to cope with, as we've found that positioning and chest physio can sometimes help stop or reduce the spasms around my ribcage.

My bladder was damaged roughly 18 months ago by a latex catheter (I'm very allergic to latex) and this made my bladder stop working as well as kidney problems. After months on a catheter it's OUT! YAY! The dr's want me to have a supa-pubic catheter placed (next to my belly button, which would mean a tube going through into the top of my bladder to collect urine) as I have pretty bad urinary retention. Again I want to try and find a better, less intrusive way of managing the retention and am planning on trying everything else first before considering surgery (although it would make my life so much simpler! no more hoisting from wheelchair to bed, removing my trousers and hoisting from bed to toilet and back again).

I'm abit frustrated at the moment as I dislocated my hip last week and it's gone into spasm whilst subluxed and so my right hip is currently in spasm, resulting in an angle of about 140 degrees so sitting in my wheelchair is horrifically painful. Everyone's trying to get it moving again as the longer I'm stuck in bed the less tolerance I'll have for sitting. I suppose it's lucky in some ways though as the stupid wheelchair is broken again (for once not my fault) as the main controls were snapped off and are't going to be replaced until the 25th. The other controls can be used, but they're alot tougher for people to use and results in me being banged into everything by everyone!

There is some potentially good news though. I am on the waiting list to be considered for deep brain stimulation. I have also started on Tizanidine which appears to be making a difference. I'm only increasing it slowly and have only been on it for a couple of weeks, but it appears to be loosening up some of my joints - just a tiny degree at the moment - but progress in the right direction! It's just frustrating that it's not helping my hip. Medication wise I'm now on Ketamine, Oxycontin, Oxynorm, Baclofen, Trihexyphenidryl, Diazipam, Tizanidine, Paracetemol and Arcoxia. I'm hoping that increasing the Tizanidine can give me some pain relief and improve my movement, so please all keep your fingers crossed - and I'd be really interested if any of you have experience with it. I'm currently on 8mg a day but am trying to increase to 36mg a day.

However, I've just realised I've only given you a medical update. Otherwise.. I'm missing uni and my friends from there. It's been lovely coming back to mum's as it's quieter and far less stressful - but it can still be lonely sometimes, especially as Jimmy-Jo is now working part time (he's training a new carer of mine and him going to work is a huge step towards our independence as a couple.

How do you all cope with your partners? and them going out to work, or staying as a carer or what?

I don't want Jimmy-Jo to feel that he has to be with me all the time as, especially when I'm ill or bed bound, he can be stuck by side for weeks. I want him to not be tied down by my RSD and I don't want him to miss out on life, just because my body won't let me live mine sometimes). What I mean by "independence" is that I am not totally reliant on him and he is not my full time carer. This should hopefully mean that we can spend more quality time together and appreciate each other and our time together instead of spending time together doing my personal care or dealing with pain/ spasms/ storms. I don't think I've expressed that terribly well, but I hope you can understand what I'm trying to say. Jimmy-Jo is working in our local village pub/ restaurant as a server and is loving it, especially as almost all the produce used is grown or reared in the village. Locals also go mushrooming, berry picking, fishing and cray fish fishing (langoustine fishing), amongst other foraging, to sell to the pub. Jimmy -Jo has really taken to foraging and fishing. I'm really pleased he enjoys it so much, but it can sometimes be hard not to get resentful that he can go out and do what I used to do in the places where I used to do it.

Anyway, that's it for now as this has taken me hours to complete. I hope I haven't forgotten anything too major. I'm also very sorry it's such a long email. Please let me know how you're all getting along.

All my love and pain free hugs

Rosie xxxxx

[smae]

Unfortunately, I don't have any wonderful advice for you. I have not been diagnosed with RSD, but my family doctor wants me to ask the pain management doctor I see next week if he thinks I may have it. I do have 5 different things wrong with my back as well as peripheral neuropathy (which causes the majority of my pain) and a bunch of other medical problems. I have had chronic pain since I was 8 years old and am now 24. I've been bedridden for 4 1/2 months now. I am on tizandine and that is the only medicine that has done any good for me--it doesn't take away any pain or spasms, but it does help me sleep. I've been on a whole bunch of different pain medicines, from tylenol with codeine 3 and 4 to vicodin to oxycodone... just yesterday I started the 72 hour fentanyl patch. I haven't responded to any pain medicine (it doesn't touch the pain at all), so I can't work at all. Right now I'm just being bounced from doctor to doctor... I've been told by countless doctors "we can't do anything for you"... they have all given up. So like I said--I don't have any advice, because I'm kind of in a similar situation. But, I just felt like I needed to reply because we sound like we are in similar situations, and I wanted to let you know that I am always up for talking if you want to chat. I haven't found many yet on this site who are bedridden or seem to have the amount of pain I have (theirs seems to be much less or much worse)... so it is always nice to find someone that seems to be able to relate a bit. Feel free to message me any time. I do hope you are able to either study some more or work soon--it is hard to not be able to do either! I am also living with my mom right now and missing my friends, and while it is hard, it's nice to have mothers who care so much and are willing to take care of us, right? =) I don't know what I'd do without my mom right now!

[Imahotep]

I take 6 mg of tizanidine and it helps stop the tremors.


It makes a big difference with being able to sleep.

[frogga]

Hiya,

Thanks for the replies. Strangely the one thing I haven't experienced with Tizanidine is tiredness/ helping sleep - but I'm still increasing the dose. It would be great if it helped with sleep. James complains that sharing a bed with me is like having a vibrating bed as I go through stages of just shaking continually and he gets fed up with me not sleeping at night - especially as I can't move on my own/ roll over/ sit up etc and have to wake him up if I need to be repositioned. So, he's very pleased to hear that the Tizanidine might help with sleep!

Nice to meet you Sarah Mae - Sorry that you have so much pain and that you also have had the joy of moving back in with your mum as well! I will try and PM you soon..

Love and pain free hugs

Rosie xxxxx

[ali12]

Hi Rosie,

Wow, I am so so sorry to hear about everything that you have been through lately! I can't imagine to begin how scary it must be for you and really do hope that you feel better soon and that the DBS helps you should you be able to go down that route.

I wanted to say a massive Congratulations to you on graduating. I am so proud of you! Your an inspiration to all of us here - most people would have given up if they were in the same situation as you but you persevered! It definitiely gives me hope that I could go to Uni / College and do a course in Psychology as that is something I am wanting to do also.

I am SO glad that you have James looking after you - I know how much that can help and it just goes to show that there are caring people out there!

I know it isn't the same because I am quite a bit younger than you (15) but i have got a boyfriend also and he has been a huge support. Weve been together nearly 6 months now and he hasn't left my side when I have been ill despite constand pleas from my mum and I telling him that if things get too much for him to deal with then he doesn't have to stick around. He comes and looks after me whilst my mum has to work and it has helped a lot. I guess he kinda relates to what I am going through as he has very mild Cerable Palsy (it only affects his right arm to a small degree) and Cystic Fibrosis so he understands just how frustrating it is when people aren't always there for you.

Simon (boyfriend) has been so supportive that my mum has put in for carers allowance for him. He gets Ł54 a week ... it's a small ammount but he says he wants to look after me.

Like you, I always let him know that he can go out with his friends and family whenever he wants as I am sure my health can get him down at times. He always says he'd sooner stay wih me though

I do hope you feel better soon, you don't deserve to be dealing with all of this.

Take care of yourself,
Ali xxxx

[allentgamer]

Hi Rosie!!!

I too want to congratulate you on graduating too

It has been a while and it is real good to hear from you. So sorry about all your going through, but isnt it great to have people around you that love and care about you.

This coming week I start classes to finish a degree I started way back in 1988. Only 3 more classes LOL! When I start thinking negative thoughts, like can I do this, is when I think about what you go through and still carry on. You have always, and always will be a great inspiration!

So glad you posted up!

[fmichael]

Dear frogga, Sarah Mae, Ali and Allen -

Once more, I bow my head to true heroes who have for too long endured the horrors of the worst of RSD or just plain old neuropathic pain (NPP). And congratulations to one and all that retain the intellectual faculties and discipline to get a degree through all of this! (For me, I seem to be “parallel processing” a myriad of tasks into simultaneous incompletion.)

But frogga's reference to DBS brings to mind the most important article I've read in years, 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, Epub 2010 Mar 24 FULL TEXT @ http://www.rsds.org/2/library/articl..._Pain_2010.pdf:

Dept. of Physiology & Neuroscience, New York University School of Medicine, 550 First Ave., New York, NY 10016, USA.

Abstract
Complex Regional Pain Syndrome (CRPS) is a neuropathic disease that presents a continuing challenge in terms of pathophysiology, diagnosis, and treatment. Recent studies of neuropathic pain, in both animals and patients, have established a direct relationship between abnormal thalamic rhythmicity related to Thalamo-cortical Dysrhythmia (TCD) and the occurrence of central pain. Here, this relationship has been examined using magneto-encephalographic (MEG) imaging in CRPS Type I, characterized by the absence of nerve lesions. The study addresses spontaneous MEG activity from 13 awake, adult patients (2 men, 11 women; age 15-62), with CRPS Type I of one extremity (duration range: 3months to 10years) and from 13 control subjects. All CRPS I patients demonstrated peaks in power spectrum in the delta (<4Hz) and/or theta (4-9Hz) frequency ranges resulting in a characteristically increased spectral power in those ranges when compared to control subjects. The localization of such abnormal activity, implemented using independent component analysis (ICA) of the sensor data, showed delta and/or theta range activity localized to the somatosensory cortex corresponding to the pain localization, and to orbitofrontal-temporal cortices related to the affective pain perception. Indeed, CRPS Type I patients presented abnormal brain activity typical of TCD, which has both diagnostic value indicating a central origin for this ailment and a potential treatment interest involving pharmacological and electrical stimulation therapies. Copyright © 2010 International Association for the Study of Pain. Published by Elsevier B.V. All rights reserved.

PMID: 20338687 [PubMed - as supplied by publisher]

http://www.ncbi.nlm.nih.gov/pubmed/20338687

Before going further, I should note that Rodolfo Llinás, the senior and corresponding author, Department Chairman and Professor of Physiology and Neuroscience at the New York University School of Medicine, is widely regarded ''one of the great neuroscientists of the age.'' Listening to the Conversation of Neurons (Scientist at Work: Dr. Rodolfo Llinas), Philip J. Hilts, New York Times, May 27, 1997 http://www.nytimes.com/1997/05/27/sc...f-neurons.html:

''We think about the brain differently as a result of him,'' Dr. [Roger] Traub , a neuroscientist at I.B.M.'s laboratories in Yorktown Heights, N.Y., said. ''Some people do beautiful cell work in the laboratory. Others are great thinker-types. There are not many people who do both, and Llinas is one.''

And that was before Dr. Llinás delivered his seminal paper on thalamo-cortical oscillations before the annual meeting of The Society for Neuroscience in October, 1999. New Way Of Looking At Diseases Of the Brain, Sandra Blakeslee, New York Times, October 26, 1999 http://www.nytimes.com/1999/10/26/sc...the-brain.html Because of the beautiful manner in which the theory is explained in lay terms, I cannot recommend the article highly enough, where “Abnormal thalamocortical activity in patients with Complex Regional Pain Syndrome (CRPS) Type I” can be tough sledding in places. And A Pro Pos of frogga’s wait-list for DBS, the NYT article concludes with the following:

All these disorders might be treated by implanting electrodes into the thalamus to break the abnormal oscillation patterns, Dr. Llinas said. In fact, the most effective treatment for Parkinson's patients who do not respond to drug therapy involves putting electrodes directly into the thalamus. ''This breaks the abnormal disconnection and the person immediately gets better,'' Dr. Llinas said. ''But you have to keep the electrode in. It's like a pacemaker.'' Similar surgeries have been tried successfully for chronic pain and depression. In each case, the electrode is targeted on only a few thousand cells.

Presumably, the NY Times article was based upon the October 21, 1999 paper published (with a considerable amount of math) as 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 FULL TEXT @ http://www.pnas.org/content/96/26/15222.full.pdf

Department of Physiology, New York University School of Medicine, 550 First Avenue, New York, NY 10016, USA.

Abstract
Spontaneous magnetoencephalographic activity was recorded in awake, healthy human controls and in patients suffering from neurogenic pain, tinnitus, Parkinson's disease, or depression. Compared with controls, patients showed increased low-frequency theta rhythmicity, in conjunction with a widespread and marked increase of coherence among high- and low-frequency oscillations. These data indicate the presence of a thalamocortical dysrhythmia, which we propose is responsible for all the above mentioned conditions. This coherent theta activity, the result of a resonant interaction between thalamus and cortex, is due to the generation of low-threshold calcium spike bursts by thalamic cells. The presence of these bursts is directly related to thalamic cell hyperpolarization, brought about by either excess inhibition or disfacilitation. The emergence of positive clinical symptoms is viewed as resulting from ectopic gamma-band activation, which we refer to as the "edge effect." This effect is observable as increased coherence between low- and high-frequency oscillations, probably resulting from inhibitory asymmetry between high- and low-frequency thalamocortical modules at the cortical level.

PMID: 10611366 [PubMed - indexed for MEDLINE] PMCID: PMC24801

http://www.ncbi.nlm.nih.gov/pubmed/10611366 (Cited by an astoundingly high 35 PubMed Central articles.)

But where it gets cool, is that Dr. Llinás isn’t necessarily speaking in terms of the implantation of electrodes through conventional neurosurgery. See, Transcript, “Enter the 'i of the vortex'” with neuroscientist Rodolfo - Llinás [The Science Studio] April 17, 2007, from the apparently uncopyrighted transcript of an interview which is itself designed to be freely linked to any website, http://thesciencenetwork.org/program...-of-the-vortex:

BINGHAM: What about this new work you’ve been doing, using… Can you explain this new work you’ve been doing using nanowires? “Nano” of course is very much a buzz phrase and perhaps you could explain that we’re just talking about extremely small technology here and how it works and so on?

LLINÁS: It is something that is the obvious next step in the conversation we’ve been having. We were saying look, the nervous system evolved to move, intelligent language, and all the things are pre-motor events that allow you to then move intelligently. Moving intelligence is what we do at this point and we extend that. We also know these things can be modulated by electrical means. You can stimulate, you can move your foot, you can stimulate and get someone who has a disease to not have the disease anymore and so on. So the system is amenable to direct interaction with the external world by means other than nerves. Comma oh my god, closed parentheses, really. And I say yeah. The problem is that the brain is guarded by bone.

I say in the book we have an exoskeleton when we talk about the brain. The rest, the muscles are out and so on, so ok. If a) the brain were to, if the cranium were to be transparent, we could see the activity of the brain, instead of looking at people’s faces, you would look at people’s brains and say don’t think that. You could see the patterns and say no, no, don’t take it like that. The same thing happens when somebody tells you that they’re not agreeing with you.

Imagine that in addition to doing like that, you could say well what if I actually communicate with you directly so we don’t have to go through all this blabbering or this talking and I’ll tell you exactly how I feel. How could I do it in principle? Well I could go directly to the brain. The problem is, oh my god, but you have to then penetrate this bone. So thinking about how could we do it, is well, the brain is full of holes, don’t make any new ones. And what are the holes I’m thinking about? The vascular system. So imagine. The blood vessels, right. Imagine yourself becoming very small in this beautiful whole film- science fiction, into the vessels and you go into the brain. Where can you go? Anywhere. The brain is completely vascularized. It’s full of these vessels and they occur every 15 microns, it’s a 3-dimensional scaffolding that goes everywhere. And then the question is, don’t go to the brain through the outside, go to the brain through the inside. Why not put a wire up to anywhere you want in the brain and try to record or stimulate or both. But it has to be a very thin wire because you don’t want it to bother circulation. It has to be of such material that it’s not recognized by the body as being there. Can this be done? The answer is yeah, there are ways to protect the wire from being…

BINGHAM: You’re right, this does sound like science fiction and the utility would be what?

LLINÁS: The utility would be…. The utility would be as follows. At this moment we are getting to about a 30 nanometer wire. It is a third of a micron- a micron being very small- thousandths of a millimeter. You can put several hundred in the diameter of a single hair. Ok so you float this thing, say you want to do more than one, you want to do ten or a hundred or a thousand or ten thousand or however many, so you can wire the brain from the inside. What can you do? Two things, you can record and you can stimulate. Ok so you have something in front of you about your brain or in front of you about somebody else’s brain, heaven forbid, with the ability to address the brain. What is the first thing you do? Well you probably instead of doing electrical stimulation of the top, you’ll do it to the vessel.

Now is this done? The answer is, it is done every day in neurosurgery for other
reasons. The people who do that are called interventional neuroradiologists and they put in things that go around and let go little objects that would close a vessel that has an aneurysm or something. You correct, this is things that people know how to do very well and I have many friends who are neuroradiologists. You say, ok can you put this thing and please I’d like to have my visual cortex wired. Yeah sure. Put it in. You put a little ball of these wires which then on touching fluid begin to slowly move out and of course you wire part of the brain. They are so small they are not going to impede circulation; they are not going to produce coagulation. They are simply not going to be recognized as being there.

http://thesciencenetwork.org/media/v...Transcript.pdf

Side note to Rosie: I strongly recommend that you watch the full 1 hr. 12 min. interview. Llinás begins with a central thesis ”If our cells [acting as effectors] don’t feel, then we won’t,” before launching into this wonderful description of the fourth year of his life, spent upon invitation in the home of his widowed Columbian grandfather, a professor of psychiatry-neurology, which remembered “every millisecond of it. Really.” It was not for nothing that the introduction to the Colombian edition of I of the Vortex: From Neurons to Self (2002) was written by Gabriel Garcia Marquez! In fact, immediately after noting how lucky he was to have attended a high school where members if the faculty were among the leading European academics of their time – who had fled WWII – and who taught concepts instead of facts. He ticks off a number of salient points, how electrical stimulation removes dystonia and that “the mind is soluble in local anesthetic.”

Then too, the interview is just so filled with so much brilliant stuff I would be a bore in trying to repeat it. Viz., volition is what is already happening somewhere else in the brain and taking possession of it; “free will is knowing what you are going to do, that’s all. Not necessarily willing it.” (A point further developed in The 'prediction imperative' as the basis for self-awareness, Llinás RR, Roy S, Philos Trans R Soc Lond B Biol Sci. 2009 May 12; 364(1521):1301-7, FULL TEXT @ http://www.ncbi.nlm.nih.gov/pmc/arti...tb20080309.pdf) And, the more we learn about what we are, the more we will find others interesting and likeable. Trust me: there is amazing stuff in there.


The central thrust of “Abnormal thalamocortical activity in patients with Complex Regional Pain Syndrome (CRPS) Type I” http://www.rsds.org/2/library/articl..._Pain_2010.pdf is captured for our purpose in the “Discussion” at pp. 8 – 10 of the Epub. For anyone who is at all familiar with the current medical literature on CRPS, it is disappointing to realize how little if any of the EEG literature is apparently followed by those academic neuroscientists and neurologists specializing in either CRPS or NPP. A point made in the opening sentences to the accompanying Commentary, Thalamocortical dysrhythmia and chronic pain, Jones EG, Pain 2010 Jul; 150(1):4-5. Epub 2010 Apr 14:

The paper by Walton et al. [13] in this issue of Pain brings a new perspective to the problem of central pain, in this case complex regional pain syndrome without peripheral nerve injury (CRPSI). It is a perspective that may have escaped the notice of many pain scientists and sensory physiologists.

(See, e.g., Brief, low frequency stimulation of rat peripheral C-fibres evokes prolonged microglial-induced central sensitization in adults but not in neonates, Hathway GJ, Vega-Avelaira D, Moss A, Ingram R, Fitzgerald M, Pain 2009;110-118, FULL TEXT @ http://www.rsds.org/2/library/articl...J_Pain2009.pdf and Treatment of CRPS with ECT, Wolanin MW, Gulevski V, Schwartzman R, Pain Phys. 2007; 10:573-578, FULL TEXT @ http://www.rsds.org/2/library/articl...chwartzman.pdf) Check out the following excerpts from the Discussion section of “Abnormal thalamocortical activity in patients with Complex Regional Pain Syndrome (CRPS) Type I” and their associated footnotes, which among other things, make the heretofore “unknown mechanism” by which electrical stimulation alleviates chronic pain all too apparent:

Our finding of somatosensory activity corresponding to the reported region of spontaneous pain is consistent with such localization in evoked pain studies (see [71]). However, domination by low frequency activity (Figs. 3A and 4) suggests that these neurons do not participate directly in pain localization. Rather, these neurons induce increased activity in adjacent cortical regions through an edge effect [37,39]. A reduction in the normal lateral inhibition would force adjacent cortical areas into spontaneous and protracted high frequency oscillations resulting in a constantly present sensation. This interpretation is consistent with MEG [30,43] and EEG [60] studies of patients with unilateral CRPS I showing that the CNS signal evoked by sensory stimulation of the affected limb is greater than that evoked by simulation of the unaffected limb. Changes of S1 are also seen in other types of NPP [13,14,45,74]. Pain localization is provided by such somatosensory activation while the emotional component is provided by activity in limbic regions.

* * *

An attractive interpretation of these data is that CRPS I reflects a neurological ‘‘disconnection syndrome” resulting in a disturbance in thalamocortical interplay and a chronic dynamically recurrent TCD. Electrophysiologically, TCD is characterized by hyperpolarization of thalamic neurons, low frequency resonant recurrent interaction between thalamic and cortical neurons [35], and the presence of an edge effect. Thalamic neuronal hyperpolarization occurs by excess inhibition [34], disfacilitation from thalamic deafferentation [35,76], or block of excitatory ligand-gated channels [72]. Low frequency rhythmic MEG activity as seen here is, we propose, the result of a functional channelopathy. Thus, a chronic deinactivation of thalamic Cav3.1 channels [7,40] results in low frequency spontaneous thalamic rhythmicity. Indeed, low frequency thalamic bursts have been recorded from NPP patients [26].

* * *

Thalamic neuron hyperpolarization is consistent with the finding that somatosensory cortical neurons in CRPS I patients have a reduced sensitivity to tactile perception [58] and a reduced cortical representation of the affected body region when evoked by natural or electrical stimulation [30,43,58,60]. Thus, this reduction may result not only from an impoverished input but also from a reduced responsiveness of the remaining cells to the small natural inputs they might receive. There is an emerging theme of TCD in NPP. Low frequency oscillations and shift of the power spectra toward lower frequencies have consistently been found in other NPP states as recorded from cortex [6,10,69,70,73] and thalamus [20,25–27,33,69]. A study of patients with chronic, severe NPP reported a high temporal coherence between central lateral thalamic field potentials and cortical EEG oscillations at 4–9 Hz [68]. Such high thalamocortical coherence supports the role of the thalamus in synchronizing the cortical oscillations seen in animal studies [40]. An edge effect has been observed in other types of NPP as increased beta activity [28,69,73] and as increased gamma activity in tinnitus [9,39,63,77] and migraineurs [8]. This edge effect has been proposed to generate the positive symptoms in pain and allodynia [27,36,70], in movement [53,67], and in psychiatric disorders [36,38,39,77]. Thus, a common neuronal mechanism may underlie these disorders. TCD in various disorders is distinguished by the region of thalamic nucleus with low frequency oscillations [26]. The presence of high frequency activity is a subject of interest for future MEG studies of CRPS I.

* * *

Concerning stimulation, any stimulus resulting in thalamic neuron depolarization, and thus normal rhythmicity and responsiveness, will be beneficial in CRPS I patients. The effects of spinal cord and brain stimulation in phantom pain [62] probably result from thalamic depolarization by collateral afferent activity and possible sprouting-type plasticity. Also based on TCD circuitry, a therapeutic microlesion of the Field of Forel† may provide lasting pain relief in CRPS I as in other types of NPP [27,28]. Following campectomy‡, abnormal low and high frequency activity and reported pain level gradually decrease together [68,69].

† Fields of Forel is an area in a deep part of the brain known as the diencephalon. It is below the thalamus and consists of three defined, white matter areas of the subthalamus. These three regions are named "H fields" (for Haubenfelder). The first, field H1, is the thalamic fasciculus, a horizontal white matter tract between the subthalamus and the thalamus. These fibers are projections to the thalamus from the basal ganglia (globus pallidus) and the cerebellum. H1 is separated from H2 by the zona incerta. Field H2 is also made up of projections from the pallidum to the thalamus, but these course the subthalamic nucleus (dorsal). Field H3 (aka the prerubral field), is a large zone of mixed gray and white matter located just rostral (In front) of the red nucleus. http://en.wikipedia.org/wiki/Fields_of_forel

‡ Limited neocortical removal. Presurgical strategies and epilepsy surgery in children: comparison of literature and personal experiences, Munari C, Lo Russo G, Minotti L, et al, Childs Nerv Syst. 1999 Apr;15(4):149-57

Notes
[7] Chemin J, Monteil A, Perez-Reyes E, Bourinet E, Nargeot J, Lory P. Specific contribution of human T-type calcium channel isotypes (alpha(1G), alpha(1H) and alpha(1I)) to neuronal excitability. J Physiol 2002; 540:3–14.

[8] Coppola G, Ambrosini A, Di Clemente L, Magis D, Fumal A, Gerard P, Pierelli F, Schoenen J. Interictal abnormalities of gamma band activity in visual evoked responses in migraine: an indication of thalamocortical dysrhythmia? Cephalalgia 2007; 27:1360–7.

[9] De Ridder D, De Mulder G, Verstraeten E, Seidman M, Elisevich K, Sunaert S, Kovacs S, Van der Kelen K, Van de Heyning P, Moller A. Auditory cortex stimulation for tinnitus. Acta Neurochir Suppl 2007; 97:451–62.

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If anyone wants to acknowledge some frustration that two sides of the same “Dept. of Neurology brain” have not been communicating for the last two decades or so, this may be the time to do so.

Mike

[frogga]

Hi Allen,

Congratulations on going back to complete your degree - I'll be rooting for you the whole way.. you know you can do it! What degree are you completing? It's hard work balancing studying with pain, not overdoing it, and of course living with "real - life" too but I'm certain you'll succeed.

Personally I need to do something such as studying or reading as a distraction to the pain. I'm sure you expect your body to rebel at the beginning, but stick with it and you'll get there.

Please let me know how it goes

Love etc

Rosie xxxxx

[allentgamer]

I sure will keep you posted. The actual experience already started on of all days friday the 13th LOL!! Right off the bat having trouble with financial aid, but it is just a hiccup. Nothing a good starbucks couldnt smooth over

Mike you are blessed bro. Even if you lost a bazillion brain cells you still have a great mind, and are light years ahead of most folks
The information you posted is very good stuff!! Kinda helps to explain why some of my closer friends say they are mourning my loss of brain function, even though I really dont notice that much loss. It is only frustrating to me that at one time I didnt need an assistant to run 3 departments in a casino, but now cant even remember my own phone number of which I have had for several years LOL!

I believe we will see some great advances in this particular field in the coming years. Maybe one day everything could be manipulated by vibrations, where you would be able to adjust and aim the vibrations to the area needing stimulation. Totally avoiding any need for surgery, or probes into the brain. Kinda like star trek LOL!!

[frogga]

Allen,

I fully agree..

Mike does have a fantastic brain!! (and insatiable research skills.. how about a Phd in neuroscience specialising in RSD Mike? I'm sure we'd all chip in to give you a grant if you don't want to work for a uni - and then you can give dr's the cure for us all! )

Eugh - hate the memory problems. My worst is names.. it gets embarrassing when someone who's introduced themselves 10+ times and I STILL don't get their names!

Also, a small bit of random information.. TMS (Trans magnetic stimulation) has been used by an Australian physicist to induce savant skills (exceptional ability within a domain, typically art, music (perfect pitch), hyperlexia (reading), calender calculation or maths (mental maths). Savantism is generally seen in people who have an autistic spectrum disorder, e.g. the movie the rainman). The results were really impressive - people who could only draw averagely drew extremely well, people became expert proofreaders etc for around 40 minutes after stimulation of the left parietal lobe with TMS. Snyder reckons that when TMS is used on the left parietal lobe it allows the person to tap into innate abilities through reducing the executive function of information processing. Oops, sorry, realised this might not be very comprehensible, I studied it in cognitive neuroscience and it really fascinated me

What course are you doing?

Love and best wishes

Rosie xxxx