CPS is an insidious result of damage to the central nervous system. For a more in-depth description see: An Introduction to Dejerine–Roussy Syndrome AKA……………..
CPS Management Options
There is no cure and traditional medicine provides very little relief. The best we can do is to find ways to bring the pain down to a manageable level. Typical pain relievers such as Vicodin, Oxycontin, and other narcotics don’t touch the pain from CPS.
Anti seizure meds such as Gabapentin and Lyrica help a few people manage it. However, they come with many unpleasant side effects. For people like me, they don’t provide much relief plus the side effects are far worse than the non-relenting high-level pain. (see: Insanity Reigns)
It’s been suggested that narcotic analgesics such as morphine, methadone and heroin are very effective. You can also have a pump implanted in your body to dispense the drugs. Who wants to take those for the rest of their life? Not me, I’d like to enjoy the moments of clarity the stroke allowed me to keep.
Another option, if all else fails, is to have an electrode implanted in your brain that sends stimulation to the pain receptors. Another option that’s not for me.
Avoiding triggers is another way to lessen the pain but it’s difficult (there are so many unavoidable triggers) and avoidance only prevent extreme flare-ups……..sometimes.
I have discovered an odd but extremely helpful way to diminish the CPS fire without drugs or invasive treatments. It also takes extremely little effort and feels nice! Yay!
It’s not a cure but it has taken the pain from an unbearable constant level 9-10 to a livable consistent level 2-3 with some short-lived flares when triggers are unavoidable.
When I say discovered, I mean accidentally found. No doctor or therapist told me about it. I never came across this in my endless CPS & stroke research. To be honest, even after knowing what to look for, I can’t find much info at all.
I’m in the least bit concerned about the lack of formal studies. If it’s possible, I’m even less concerned after reading Editor In Chief Of World’s Best Known Medical Journal: Half Of All The Literature Is False.
The lack of formal studies does not take away from the fact that:
• I don’t take any medications
• I no longer say “Don’t touch me, it hurts”
• My bad (affected) side is the same temperature as my good side
• I’m no longer losing my mind from experiencing such high levels of constant pain
If you have CPS, you understand the way pain changes you and can affect your sanity. I’d try just about anything to stop the constant high-level pain. Well except the extreme options I’ve already mentioned.
I did not stumble upon this treatment as a solution to pain or anything else it works for. As I said, even after knowing what I was looking for, I still couldn’t find much information on it.
Pure Luck Led to Solution
It all started, of course, with my Acupuncturist/Chiropractor/Dear Friend , my savior since the stroke even when he’s not trying to be.
During treatments, he placed this heat lamp above me. Acupuncturists use it as a form of moxibustion.
As I previously mentioned, one of the stroke effects I experienced was feeling unbelievably cold. The 2 winters after the stroke, I not only had my heat set to 74, but I also used every extra blanket we owned (about 10 of them).
My left side was at least 10 degrees colder than my right. Even the color was different. Half of me looked like a ghost due to the lack of blood flow.
I don’t know why it took me so long but after 18 months, I mentioned that I needed one of the lamps at home to get a break from feeling so cold. The heat from the lamp was an awesome relief. It provided a deep warmth that felt amazing, internal warmth that 10 blankets and high house heat could not provide.
I knew nothing about the lamp except it felt nice.
A couple weeks after I mentioned I wanted one at home he surprisingly gave me one. I do love this man.
He had no idea what giving me this would do for me. We were both in for a huge surprise.
The “Magic” Lamp
Yes, the lamp is magical. Not like Aladdin’s. No rubbing, No genie. No wishes granted.
Well maybe, if your wishes (bearable pain) are similar to mine than you can have one granted too.
Magic because it just doesn’t make sense.
It’s actually called a TDP Far Infrared Mineral Lamp, although, it’s also called the ‘miracle lamp’ in China.
Originally, I used it to warm my freezing body. Just to feel warm for a short period on my affected side was magical in itself.
But the real results, the results that make this the most magical lamp in the world is that it stopped me from saying “don’t touch me, it hurts” 15-20 times a day and 50 times on Sundays. The variation is due to how much time I spend with Freddy.
He’s a toucher, especially in the car. Touches hurt. Touches would tell me that what I thought was completely intolerable and couldn’t get any worse, could get worse. Touch, especially light touch was one of my worst triggers. Touches took the pain to an entirely new level.
My pain plummeted to a consistent level 2-3. In extreme circumstances such as cold or high emotions, it increases but not for long.
If that’s not magical, I can’t imagine what magical could be.
Eventually because my silence only increased Freddy’s touching, I found myself saying, “Don’t touch me, it’s irritating”. (Just because it didn’t hurt, doesn’t mean it was pleasant.) Since then, I’ve come to actually enjoy being touched again (well, most of the time).
Completely unexpected! A year of drugs that took my sanity, 18 months of excruciating pain, yet only 2 weeks, an hour a night, for the pain to decrease! Such an easy solution.
My next realization was in the shower. The water no longer sent sharp electrical impulses through my body. After a couple months, I was actually able to use warmer water, not scalding hot like pre-stroke but warmer than body temperature. It felt amazing! Now if I could only stand up and use a real shower head…………
The improvements didn’t stop there. I ditched all the extra blankets. Much to my family’s happiness, my heat was turned down to a toasty 70 degrees. To many of you that’s still high heat but I like to wear lightweight clothes and no shoes. 70 is what I’ve always had my heat set at. Growing up my mother kept the house freezing in the winter, I vowed never to be cold like that again.
I was no longer a ghost; my left side was the same normal pinkish color as my right side.
I stopped self-medicating at night before bed. The year before, when I weaned off the meds, I began smoking a little marijuana before bed for a break from the pain. Acupuncture helped but the marijuana helped in a different way (eventual post about the benefits soon). After the lamp, I no longer needed it for the pain so I stopped.
Unfortunately, a month after quitting, my spasticity majorly increased so I started again. I wasn’t aware that it was helping with spasticity until I stopped.
Stroke recovery is a 1,000-piece puzzle, with 1,000 extra pieces thrown in the pile. The key is finding the right pieces for your puzzle.
Since there has been no research on the lamp for CPS pain, there is no official protocol. I fell into my own and luckily it worked.
The skin where I had a foot ulcer was still thin and sore even though it had been a year. Being that the lamp was reported to increase circulation and improve healing, and my foot was relentlessly ice cold – I started using it over my foot for an hour a night before I went to sleep.
It made sense that my entire body temperature changed since I’d always heard keeping your feet warm helps keep your body warm. Plus where I have it next to my bed, it’s just easier to position it above my foot. During acupuncture, he places it over the needles on my stomach.
I don’t know why, but I used it every night for an hour. Maybe because that’s the longest the timer could be set for and it felt nice.
In Asia, I understand they have protocols based on what it’s used for. The time and position varies. At the time, I wasn’t aware of any of that. Remember, I was using it for warmth.
I know the “magic” lamp has made all this possible because there have been times over the past 2 ½ years when I was lax about using the lamp and my pain became intolerable. When I started again, it diminished. I don’t have to use it every night anymore. Five nights a week seems sufficient for now.
It’s well worth the time every night. I do other things while I’m using it. I’ll read, write, catch up on Facebook, chat with people, watch TV, listen to a guided meditation or massage and dry brush (helps circulation) my leg & foot.
I still only use it over my feet. Using it over my feet works so why change. I had read somewhere that toxins accumulate in your feet and it’s said that the lamp removes toxins, so…………………….
Actually, occasionally I do use it over other body parts. I randomly stick my right hand under it when the joints get sore from overuse.
I’d love to see the research from Asia. I doubt there will ever be research in the US especially associated with CPS, there’s no money to be made from a onetime investment of $125 and CPS is rare.
Do not use one without reading the summary of what I’ve learned since I was introduced to the lamp: TDP Far Infrared Lamp – A Quick Overview as well as the included resources (Please follow all links for more information) and TALKING TO YOUR DOCTOR. There are some contraindications. You will need to provide your doctor with the information because I can almost guarantee that they’ll have no idea what it is. Well, unless they practice functional or alternative medicine. Where to purchase one is also included in the article.
By the way, 4 other non-strokies in my small circle bought one and have seen improvements for various ailments. The small investment may help others in your household too!
If you have any questions, please ask below or e-mail me. Preferably below so everyone can benefit from the additional info. If you try the lamp, please come back and share with us how it works for you.