Cental Pain Syndrome resources

I consider myself very lucky to not be affected by the "pain monster" that is CPS. One of my dear friends is afflicted with this monster and she has put together a number of resources that she has come across. I am passing them along to you in hopes that if you have CPS, you can connect with others and benefit from this list Patti has assembled. If you know of any additional resources, please post them in the comments so that others may benefit from your wisdom.

CENTRAL PAIN SYNDROME (CPS) RESOURCES



Patients Like Me: Central Pain Syndrome
http://www.patientslikeme.com/condition ... n-syndrome

CPS UK (Central Pain Syndrome) Blog
http://centralpainsyndromeblog.wordpress.com/

Weeks after Stroke, Some Patients Develop Chronic Debilitating Pain

http://oc1dean.blogspot.com/2013/05/weeks-after-stroke-some-patients.html

Central Pain Syndrome Alliance
http://www.centralpain.org/

Fluoxetine Reduces Central Post-Stroke Pain: A Comparitive Pilot Study 
http://en.cnki.com.cn/Article_en/CJFDTOTAL-ZTYZ200405006.htm

I Have Central Pain Syndrome
http://www.experienceproject.com/groups ... rome/97371

Central Pain / Facebook
https://www.facebook.com/pages/Central- ... &filter=12

The Fires of Hell Blog
http://thefiresofhelldotwordpressdotcom ... com/about/

Central Pain Syndrome Foundation
http://centralpainsyndromefoundation.com/

Central Pain Foundation / Facebook
https://www.facebook.com/CentralPainSyndromeFoundation

What Central Pain Syndrome is Like
http://www.youtube.com/watch?v=vEV6FompwZg

CPS Sufferers Not Alone
http://www.youtube.com/watch?v=Y1TRXgW5jcw

Central Pain Syndrome "Message from Hell #1: How Are You?"
http://www.youtube.com/watch?v=h54Q5AQJ-Ss

A Day in the Life of Central Pain Syndrome
http://www.youtube.com/watch?v=8ed6hazqNYU

Central Pain Syndrome: lives in constant pain
http://www.youtube.com/watch?v=NIG0KywCwIY

Central Pain Syndrome: I am one among 100,000
http://www.youtube.com/watch?v=JD26ZAYh9Ck

Central Pain Syndrome: lifestyle changes
http://www.youtube.com/watch?v=aJQkfUrm ... tube_gdata

 
Patti's Ongoing Journey @ http://www.youtube.com/watch?v=gvtkxDFICO0


Patti's Story @ http://www.aans.org/Patient%20Informati ... strap.aspx



The power of Hope

I came across a blog that is new to me a few days ago, and I need to share it. I just LOVE, LOVE stories of hope, love, and commitment conquering the "impossible". Never let anyone steal your hope, dreams, and desire to achieve that which is labeled impossible. Doctors, especially neurologists, in my opinion, love to rain on your parade. It seems as if most of them take pride in sharing the doom and gloom in every situation. No matter what they tell you, your recovery does not have a deadline...it's never over until you say it is. If you want to get better,... do different, new, intense therapies, stay positive, and keep working. With hope....all is possible. The blog I found is called Hope Heals @ www.hopeheals.com  I love the name, the premise, and their story. It's a love story of a new mother and wife that suffered a massive brainstem bleed due to an AVM, and a loving devoted husband that supported and continues to support his wife every step of the way! In many ways it reminded me of our story, except her condition was much more severe than mine. They have put together a video telling their story, and it's very well done. Enjoy! 

All clear!!!!

Back in December, around my 2 year anniversary I had what will hopefully be my last MRI for a long time. We were elated to finally receive an all clear from 2 of the known cavernous angioma experts(Dr. Spetzler and Dr. Steinberg). I have had several "scary" reads in the past few years so finally getting the news we wanted to hear was almost unbelievable...but sooo good!! :) YAAY!!! My journey with cavernous angioma is finally over....hopefully forever!!! It makes it all worth it. All the stress, heartache, worry, frustration, and hard rehab work. It's all just part of the price we paid and I know how lucky I am. Not a day goes by that I am not filled with gratitude and appreciation for how lucky I am to be here and be as good as I am. 

Last year my report came in clear at the surgical site, but with a possible new angioma forming in my brainstem. At the time, I chose to just ignore the possibility...it was such an overwhelming miserable possibility. So the relief I felt when they changed their tune this year was unexplainable. Turns out what they are seeing on my brainstem is extensive brain damage, as evidenced by Wallerian Degeneration on the scans which can continue to evolve in the images for a long time. Lucky again! I have a ton of brain damage and really do very well anyway. They have said that individuals that exhibit this type of damage on MRIs typically experience poor recoveries which has not been my experience at all. Yes, I am still dealing with pretty severe fatigue, but when I get the crazy amount of sleep I require, I do pretty well. Thank God!!

The real significance in the all clear is that it allows us to move forward on "the next step" in our lives which will be detailed in my next post whenever I get a chance to write more.  Additionally, with cavernous angioma resections it is critical that the angioma be removed entirely because if even a single cell remains the angioma can and often does grow back and bleed again....Oh please....never again!!! At my 3 month MRI they called my resection a "partial resection" meaning only some was removed. I had hoped they were wrong, and as of the latest scan it looks as if the "entire angioma" was removed! Thank you, Dr. Spetzler and team!!!

As always, thank you to everyone that has offered support, advise, and kindness along our journey. We really appreciate all the love we received!!

2 Years

I missed my two year anniversary of my surgery/stroke on December 10th. That is a very good thing and is only possible because I am doing spectacular. I could have never imagined "forgetting" that date after only two years have passed since that very significant life changing event. I woke up from my surgery a complete mess, and not a day goes by that I do not feel eternally grateful for my current life and existence. I have spent the better part of the past two years working on my recovery. I still have a bunch of things that are "not right", but I know I am lucky. I worked crazy hard and I saw equally crazy good results. Even this past year, my recovery has slowed but I am greatly improved over last year. I'm going to list my current complaints as a point of reference for next year. These are the things that I am still working on:

Fatigue. This is the monster I fight everyday. I am soo darn tired all the time. I used to sleep a lot before my brain injury but I was also had lots and lots of energy and I could accomplish anything I desired. Now I get tired so easily and it actually feels painful I'm so tired. It's not normal, but it is becoming my new normal. This past year I saw some improvement in this, but it's still very far from normal. I am now awake twice a day for 5 hours...the rest of the time I'm sleeping. I have tried every single treatment option with little to no success...maybe this one is just time??

Left leg/calf/foot? I'm not sure what's wrong exactly, but my left shoe always falls off. Last year I struggled through still wearing my regular old shoes. They fall off with every alternating step (only the left foot...my affected side). My thought was that as I continued to wear them...my muscles would strengthen and it would stop. It didn't and so this year I bought new shoes with straps and a few pairs of boots. I asked my neurologist to send me back to PT to work on this because I would love to be all better...and she said no because well...I'm pretty darn good. No AFO, no cane, just a shoe that falls off. Grrr.Whatever...I know I'm lucky...just picky I guess.

Fine motor in left hand is not great, but I am right handed so it's not much of an issue. I can use my hand to carry something, open a door, etc, but small things are tough. Zippers, buttons, opening mail, those are reminders of where I have been because they still provide a challenge. John is often reminding me to "use" my left arm because it's mostly just hanging around. I should concentrate on using it more. I would probably get better; I usually just "forget" to use it.

Hyperacusis(crazy intense super hearing) This one is very annoying. My hearing is turned up way too much. Small sounds sound loud and loud sounds are painfully unnerving. This makes social situations more difficult. Restaurants are too loud. Parties and get togethers are draining. Music/TV background noise is like nails on a chalk board. Tiny sounds wake me up constantly even though I wear ear plugs and have a fan to drown out noise. This has improved some but is still a pretty big issue.

That is mostly it....lucky!!! I am certainly not complaining...just explaining where I'm at. I have some cognitive issues like slower than normal thinking, some difficulty with auditory processing, difficulty multitasking. I am also easily overstimulated visually usually while shopping, and by too much noise often. I'm so much better than I was and I'm getting better all the time. The cognitive issues are reminders to me, but nobody else would probably notice. I try to be patient with myself. Patience is a HUGE lesson for me and just one of the main take aways from all of this.

 

Acceptance?

*****I actually started this post in October....just getting around to posting it now****

I have had a sort of shift in my thought process in the past few weeks. You hear about "acceptance" in the stroke world and it always carried such a negative sort of connotation for me. As if accepting any of these deficits means I've surrendered, quit, or given up....and that is NOT what I'm about. I am persistent like crazy so how could it possibly be that I am coming to place of acceptance. Perhaps it's a different kind of acceptance, my own kind...that means I only accept certain parts of this for the moment...for now. I still hope and pray I will get better but I need to be cautious to not allow my not fully recovered state to limit me. Rebecca, from Home After A Stroke blog wrote a short line that has really sat with me and helped me move more towards acceptance than ever before. "Waiting for my real life to begin." That's exactly how I have felt. Once I'm all better I could do x, y, or z. Well guess what....this is my real life...I'm not all better. I'm lucky to be here and be as good as I am. I need to move forward and stop waiting for my real life begin. Coming to that revelation was very emotional. My life is far from the way it was, I'm not sure when or if I will ever get where I want to be. It doesn't mean I'm giving up on getting better ever...it just means that I'm going to continue to live in gratitude where I'm at today. Living with my current deficits means I need to make some changes. I'm going to need to ask for help sometimes...even though I hate asking for or needing help. This fatigue is consuming at times. It's frustrating for me to want to do so much only to find my self NEEDING to sleep a few hours after I woke up. I have spent the better part of 2 years trying to find a solution...to which nothing much has helped. I remain optimistic because I am way better than I was immediately post-op, but I still have a long way to go. So far there has been no great explanation for why my fatigue is so intense. Some of the doctors have called it "post stroke fatigue" PSF and they said I could deal with this forever. I hope they are wrong. There is little research focused on PSF, although it is a very common occurrence after stroke. This is my most limiting deficit today, and yet I am comfortable accepting it and moving forward. If I was left with a leg/hand that didn't work, I would have to use an AFO or brace to help me...I need massive amounts of sleep, breaks, naps. That's just how it is and I am LUCKY! I'm not waiting for my real life to begin anymore and that makes me happy! :)

Tackling fatigue

I am now a year and a half out of deep brain surgery and stroke. Fatigue is a deficit that I can not yet escape. My recovery has been excellent except for this fatigue. I HATE it!! I am constantly reading, researching, trying to figure out how to fix it...a mostly fruitless effort. But I never give up HOPE that it will get better. When? How? I have no idea, but the following outlines my latest effort.
I saw an endocrinologist to make sure there are no other medical explanations for the crippling fatigue I deal with daily. It seemed like a good idea because after brain surgery one can never be sure that something else didn't go wrong while they were in there. I also have hypothyroid (onset 4 years ago during my pregnancy) which is often a cause of fatigue, but supposedly my thyroid has remained stable according to my PCP. My opinion is that my thyroid is at least part of my fatigue problem, but I can't be sure. So, I had a full work up with the endocrinologist and there were a few issues identified. According to the tests, my thyroid was within the "normal" range and my blood sugar is low frequently. The doctor changed my thyroid to Armour and doubled the dose despite the "normal range". What do you know? I got two more hours out of the day. Previously I was awake for 4 hours twice a day, now I'm awake about 5 hours twice a day. So I think I'm heading in the right direction. My assessment is that I need more thyroid, and I need to do something about my diet to regulate my blood sugar better. I probably need to eat more frequently. Since my surgery I am less hungry, my body just doesn't seem to send the hungry message, so now I'm trying to eat at least every few hours even when I'm not hungry.

Next, I saw a naturopath. She did an assessment and made a ton of recommendations both dietary and supplements. I went home and started to look up all the supplements and was completely freaked out. I don't like taking any mediation and supplements are even more scary to me since they are not regulated at all. There is no guarantee that what they say is in the bottle is actually in there and sometimes they don't even know the active ingredient so there is no chance of "dosing" the unknown. You can not easily look up interactions, contraindications, adverse reactions, and such like prescription medications. The research on supplements is largely anecdotal and rarely includes double blind, controlled, peer reviewed, published studies. SCARY!!! I like evidence based medicine. But I want to feel better so badly and maybe this stuff just might work, but at what risk? Oh, what to do? I did a quick look up of all the supplements she had recommended and most of them contained ingredients that had the potential to lower the seizure threshold and figuring out which could be blood thinners was close to impossible(anyone with cavernous angiomas must avoid anything that thins blood)..YIKES!! and no thank you! I'm trying to get better not worse. My risk for seizures is high since I have "persistent hemosiderin" "remnants of old blood from my bleeding angioma" (they were not able to remove all of my blood stained brain during my surgery because there was just too much.), and now I also have scar tissue that can create seizures. I am also off anticonvulsants by choice, risk known to me, which puts me at an even greater risk. So  anything that can potentate seizures is out for me. To me that is what is frightening about alternative medicine. Some people think, "It's natural...it must be safe." No way!! Supplements can be more dangerous than pharmaceuticals, even though it's pharma that gets a bad rap.

The diet recommendations were a whole other story. The purposed diet was: no dairy, no caffeine, no gluten, no corn, no beans, no white rice, no soy, no nightshades(potato, tomato, etc.), no mushrooms, no eggplant, no carrots, exchange regular sugar for stevia when possible, no soda, and no alcohol. So what's left exactly? Not much. As much as I was less than thrilled with the purposed restrictions...I thought I had to at least give it a try. For one week...I did. I lost 5 lbs that week and felt like I was starving...still completely exhausted. No different in the energy dept.

Needless to say, the whole thing was a waste of time and money. The lady did refund my money for all the scary supplements she recommended, after arguing with me(which was completely annoying to me). Especially since she told me that I was "lucky" she was not charging me for the time that she spent arguing with me on the phone. Please, I already spent $300 on the office visit that was a complete waste I think if you are in the professional business of recommending supplements you should be completely informed of the risks involved. As a nurse, it was my responsibility to make sure that each and every drug, prescription, intervention, was appropriate for my patient. Sometimes the doctors made mistakes and it was my job to make sure the drug, dose, etc. was right for the patient. If you are in healthcare it is your duty and responsibility to not cause harm at the very least. I expect the same level of responsibility and accountability from members of my healthcare team that I provided for my patients and I think it's complete crap when my expectations are not met. 

As for my fighting fatigue plan, I'm starting to run out of ideas, but I will never give up hope.

Learning to just BE

Many parts of this whole "brain thing" have been difficult...and I have faced many challenges along the way...but one thing that I have gained is priceless. Previously, I was borderline OCD....type A personality....a "perfectionist" of sorts. I was also always on the move, going, doing, busy, very busy. I held several jobs at once while in college. I was always taking a class, earning a certification, maintaining a licence, on and on. I was going in a million directions all the time. A brain problem and major fatigue is a sure way to put an end to all that chaos. It's coming up on three years since my initial diagnosis and my life is completely different. While my new attitude would likely make me "less employable" it doesn't matter today and I am finally enjoying my new found ability to just be. There are days...sometimes weeks that I don't actually do anything or go anywhere, and I'm ok with that. Doing nothing, or going no where would have made me crazy before. Prior to all this if I didn't have my car for a day, I would feel claustrophobic. I guess not being able to drive at all for almost 2 years is a sure way to fix that. I can drive now, but I rarely do. Accepting and embracing my new lifestyle was a slow process for me and quite an adjustment. I certainly shed many tears along the way, frustrated when I "couldn't" do this or that. Now, I'm completely content to just be...as long as I get a nap. ;) Even as I improve I hope to never fall back into my old ways. We recently went on a vacation to Kauai. It was a fantastic trip, and I spent most of my free time just taking it all in...from my lounge chair overlooking the ocean. I didn't need to be snorkeling, going, or doing anything. I was content just hanging out. With a very busy three year old, the opportunity to just be is far and few between, so I am glad to be able to sit back and enjoy the few fleeting moments in time when nothing is happening. I'm so thankful that I am now able to really capture the moment and I have learned how to truly savor it.