New Concepts in Neurological and Immunological Recovery

Meet Dr. Kendal Stewart, an ENT who specializes in the treatment of Autism. You may ask yourself why on earth I would share videos about Autism on a blog that specializes in connective tissues diseases, but it’s not nearly as much of a stretch as you might think. This is because Ehlers-Danlos Syndrome (EDS), Myalgic Ecephalomyelitis (ME/CFS), Fibromyalgia Syndrome (FMS), Myasthinia Gravis (MG) and other common “spoonie” syndromes all have autonomic and neurological components that are shared with Autism. As you watch through these videos (and I strongly encourage you to watch all four), you’ll see exactly what I mean. In fact, Dr. Stewart himself states that the methods he discusses in treating the problems he’s talking about addressing, are the same exact problems across all diseases with autonomic and neurological factors and they will work for them all.  That’s why he’s not talking just to Autism patients, but to all those with neurological disorders.

While I’ve been aware that nutrient deficiencies are partly responsible for some of these symptoms, it wasn’t until I watched these videos that I understood that some vitamins and minerals can be methylated. Methylated vitamins are fat soluble and can be absorbed through the skin. In some cases, methylation is the only way we can get them into our diets because of common gastrointestinal problems that make it difficult for us to ingest them. He covers this in much greater detail, but he of course also covers exactly what nutrients we commonly lack along with what symptoms they cause. I’ve included all five videos below for you to watch.

Next I’m going to share some links to a few of the products he discusses. I haven’t tried any of them, but I am interested in doing so if I can manage to afford them now that I’m working. However, I want to get my levels tested on whatever I can first. I feel it’s important, though. I recently started taking Epsom salt baths for the extra magnesium and it’s no big surprise, my migraines dropped from 5-7 a week to 1-2, despite the fact that I’ve been taking magnesium orally for over a year. I also take D3 orally, but I have to take 10,000 IU a day just to keep myself in the low normal range. That’s an outrageous amount to have to take orally to get to the low range. These things tell me that I’m probably the perfect candidate for methylated vitamins and minerals and I’m sure many spoonies with IBS, gastroparesis and other common stomach problems are too.

I’m only sharing a few of the products that I feel would be most effective for our populations, but if you poke around a bit, you may find others, too:

  • Neurobiologix Calming Cream– This cream contains a number of calming nutrients perfect for dysautonomia patients, anxiety disorders and insomnia.
  • Neuro-Immune Stabilizer Topical Cream– This cream may be of particular interest to anyone with the MTHFR mutation, as it contains 5-MTHF in methylated form. It would also be great for dysautonomia and migraine sufferers deficient in D and B vitamins
  • Mitochondrial Restore– Packed with antioxidants and minerals, this pill will bolster the immune system, improve cognitive deficits and energy.

Notice that many of these have the same ingredients listed in the above compounds are also listed on my protocol. I know they work because they’re already helping me. Some I take in much higher doses (likely because I’m not getting them methylated and have to in order to try to force my digestive system to absorb as much as possible). It would probably make sense to switch those I’m taking in oral form to these methylated compounds, while I’m not so sure that taking a pill, such as the Mitochondrial Restore, would be the best option when I’m taking the powder version of some of what’s in it. However, it does give me some ideas on other substances I can try to add on in the even that I begin to struggle in these areas again. Really, what the Mitochondria Restore affects is where I need the least help these days. I can say it probably works though, since I’m on much of what it contains, or have been. For more information on my current protocol, click here.

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Try These Apps for Glare Sensitivity

sunglasses-emoji-png-transparent-imagef.lux and Twilight are apps that allow you to adjust the brightness of your computer or cellphone screens, not only by dimming them, but by giving them a rosy glow; effectively taking the sting out of any screen by eliminating the painful bright whites that are so glaring. After installing f.lux on my computer, I’ve been able to significantly increase my computer time without increasing any of my symptoms or disturbing my sleep patterns.

That’s not all these apps are good for. f.lux and Twilight were created to dim your computer or smartphone at night to prevent the disruption of your natural circadian rhythms. f.lux, which I’m using on my computer now, can even dim it gradually with sunset so it happens naturally. I’m not certain about twilight as I haven’t tried it out, yet. What this function does is to help you return to your natural circadian rhythms, which can easily be upset by bright light, possibly aiding in better, more restorative sleep and a calmer nervous system.

You can also adjust your daytime screen to any level of softness that works for you. I use a slightly rosy glow for daytime and let it dim significantly at night, sometimes making adjustments when working on images to ensure I have full resolution. It’s easy to make adjustments or disable it temporarily.

With both the reduction in migraine inducing glare and the added benefit of working to enhance circadian rhythms rather than the usual disruption screen glare can cause, programs like these could be a big win for any spoonie who suffers from migraines, glare sensitivity, and sleep issues. Both of these apps are free. You can find Twilight here or in the app store on your android phone and f.lux offers free downloads here for your computer. Upon searching there appear to be others, as well. If one doesn’t work well for your needs, you can always try another. It definitely beats turning your brightness all the way down and wearing sunglasses!

 

 

Allodynia or Allergies?

For the last three days I’ve been trying to scratch the hide right off my bones. It’s not an itch I can ignore. It’s deep, somehow under the skin and so intense I could no sooner ignore it than I could ignore an alarm clock blaring Sweet Home Alabama in my ear at 5 am and my nails are in great shape, primed for the job for which they were created. If I could, I’d go rub my bare body against a naked oak, but I doubt I’d get anymore satisfaction. In fact, giving in to scratching only seems to encourage it.

Absent are all signs of allergen exposure. I have no hives, no welts, no bumps, no signs of skin irritation. My skin is well lubricated with the only lotion I ever use. Currently, I have psoriasis plaque on exactly zero percent of my body. If I were having an MCAS reaction to an allergen, I’d have a welt on my neck. I like to call it my “Uneasy button” because it usually helps me identify quickly when I’m being exposed to a new allergen, usual chemical. I’ve been having nasal symptoms on and off, but no welt.

I’ve been taking my allergy medication and I haven’t ingested or applied anything new to my body, yet I am hit again and again with the sensation of itching in varied swaths of skin along my side, a shoulder, a finger, an elbow, my neck, my chest. It moves from one area of my body to another, a traveling salesman determined to sell me its bevy of bad mojo. I want so much to brush it off and say it’s all in my head, it isn’t real. If I just ignore it, it’ll go away. Then it becomes that alarm clock, waking me from my sleep scratching my right shoulder with the intent of a dog with fleas.

At this point, I have no choice but to assume that what I’m dealing with is another bout of allodynia. My first clue should have been the feel of the itching. It feels so “deep,” like it’s below the surface of the skin and the itch is intense and immediate, almost buzzing in its strength.

What is allodynia?

Allodynia is a common comorbid condition among spoonies that is believed to be a malfunction of the neurological system linked to chronic migraine. The messages between the sensing organ and the brain are getting mixed up in translation due to damaged neurological tissue (see diagram).

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It is described as extreme sensitivity of the sense being affected. Generally, the result is a pain sensation, but it can also be a sensation of itching or some other irritation like what I’m experiencing now. In this instance, it is tactile; my skin is reacting to all contact as an irritant and my body is sending signals to take care of it, in the form of itching.

I’m sure some people who learn about allodynia think “Who cares?  So you’re a little itchy? It isn’t even real.” It is real. Your body perceives it as real and that makes it so, just as the pain we suffer of which no source can be identified is equally as real. It’s also extremely disruptive to one’s life. Spending days to weeks stuck dealing with allodynia can be hell. Not only can it keep you from getting a good nights’ sleep, it can become so severe that even wearing clothing or feeling the bed on your back can become unbearable. The first time I had allodynia, it focused on my head, face and neck. In an act of sheer desperation I took the clippers to my head in order to get some relief from the torture that was my hair. It imbues a desperation that few things can.

What helps Allodynia?

One article suggests controlling and preventing migraines is the best way to avoid allodynia, but so far that’s been elusive for me and I know it’s difficult for many others, too. I experience migraines and allodynia (most especially auditory and visual) on a regular basis, but rarely to the extent that I’m experiencing it right now in the tactile form and I have no idea what brought it on, though it could be due to the increase in migraines I’ve been having.

During an attack of allodynia, whether it seems to be accompanied by migraine or not, I go directly for Benadryl. Why it works is unclear as allodynia is definitely not an allergic reaction, but Benadryl actually has a number of useful neurological applications, which really makes me wonder if they completely understand the drug. It works great to give migraine medication an added boost and has long been used as an ingredient in sleep aids. Since the only side effect I’ve ever suffered from it is drowsiness, I use it for all these purposes when necessary.

After being on the Benadryl for a couple days, it often seems to reset the body and things go back to normal. Since I have so many allergies and often develop new ones, I do wait a couple of days to make sure I don’t develop allergy symptoms. It sucks to suffer, but I want to make sure of what it is that I’m treating before I do so. That way I won’t expose myself to an allergen again unwittingly if that’s indeed what it turns out to be. If you have a similar profile, you may want to take the same precautions, but know that if you too suffer from allodynia, Benadryl might be a solution for you.

Discovered strategies of your own that work for your allodynia symptoms? Please share them in the comments below!