Forty Days Later

 This post might ramble.  Bear with me.  

I am 40 days into taking activated folate (I actually take an activated B-Complex).  It is not a cure, nor did I ever expect it to be.  (There can only ever be a treatment when a disease is genetic.)  I'm not "Ehlers-Danlos-free".  And my quality of life has not been so high since 2008.  

Firstly, I can think.  Clearly.  About abstract stuff as well as making decisions and carrying out tasks.  I can drive, shop, manage finances, all of that stuff  for which I need a clear head.  I have not lost that ability for one second in these 40 days.  

Secondly, I'm rarely in any pain at all.   And during these 40 days, when I have felt physical discomfort, reminding me that I still have a "thing", it has been low on the pain scale, only up to a 4.  Only twice in 40 days have I reached for a brace or supportive sleeve for a joint.  My assistive devices, canes, rollator, wheelchairs, are piled in the guest room closet.

Thirdly, and with the MOST IMPACT on my life, I don't get migraines like I did before.  Here is some data from my MigraneBuddy app.    In the last 40 days, I have opted to use a triptan for migraine only 5 times.  Intensity of those headaches averaged 3.1/10.   Duration averaged 2 hours.  On 6 other days, I had minor headaches which Advil cured quickly.  A total of 11 attack days.   VERSUS  the 40 days before I began treating with activated folate:    In the 40 days pre-folate treatment, I had 28 attack days.  I used triptans 17 times.   Intensity of those headaches was averaged 6.8/10.    Duration of attacks lasted average of 14 hours.  

This last paragraph is the powerful one.  Read it again and see if you don't feel like you've been set free from prison too!  

I think I have a decent grasp of English vocabulary yet, I stagger to try to find words to express the depth of relief I have.  Not only physical relief from not having my sweet body exist in pain, but mental relief that I don't need to be on constant guard, and emotional relief that I can breathe deeply and know that I am ok.  Relief that my life is not about daily survival anymore.  There are options and choices open to me now which weren't in the picture 41 days ago.  I wake up smiling.  Yeah.  Imagine.  

While I know that at any time, my issues could express themselves newly and differently, I live with no anxiety about that.  I am FEARLESS.  Whatever comes, I can handle.  That has been proven and will be again.  

Here are some practical changes that I've been able to undertake.   I don't have to have a hat on every time I'm under open sky.  I don't have to double-up on sunglasses.  I don't have a thick gigantic piece of black felt over my "blackout curtains" in my bedroom.  I don't need to take at least half of the prescriptions I'm on, and I'm currently reducing dosages on several (medical professionals involved, no worries).  I'm strong enough to pick up my 55 lb dog and carry him outside safely.  I can choose to go to the church service with music and heavy attendance without worry that the loud organ or generous perfumes will send me into a migraine and/or tailspin.  I can help others.  I can remember things.  I can learn.  I am reliable.  My physical body and my mind are RELIABLE.  

Here is some backstory as to what happened in 2008, and why I felt this good that year.  In Dec '07, I was still very much undiagnosed and without a doctor who was interested in helping more medically.  It was up to me to figure things out.  I discovered that I might have a vitamin B-12 deficiency so, I started taking activated B-12 called methylcobalmanin.  (Some genetic testing revealed that I have MTHFR mutation which means I don't have the necessary enzyme to break the cyanide molecule off of the standard B-12, cyanocobalmanin. ) In 3 days, I was free of every kind of discomfort.  For 14 months, I LIVED.  I went back to college finishing my Bachelors degree and moving on to the PhD program.  I did an internship. I got married.   I taught as a GTA.    And, the day after Spring Break in '09, every single kind of pain and problem returned.  I returned from the break, our honeymoon in Gatlinburg, to teaching my classes from my wheelchair with a very foggy head.  My solution, or what I'd thought I'd figured out, was defeated.  I had to leave school and live in a constant state of pain once again.  But, for a little while, I had a blissful reprieve.   This is the reason I bought in to the news of methylated folate right away.  I'd been using the sister B, B-12 in a methylated form and had fantastic, drastic results.  Now, I take a B-complex wherein each B vitamin is activated for me.    

I want to urge any who have migraines, not just fellow EDS patients, to try methylated B vitamins.  There is little danger.  There is little to lose.  If a MTHFR mutation is known, this is a gigantic tool in your toolbox.  If the mutation is not present and methylated B is taken, you could feel side-effects.  Personally, I recommend doing the inexpensive 23andme test to find out if you have that particular mutation.  That way you can treat it definitively, or not.  There is an upper limit to how much methly-folate is appropriate.  Manufacturers make sure those of us who need it don't overdo the dosage.  

I never thought there'd be an appropriate treatment for my particular disease available in my lifetime.  And it never occured to me once that it would be so readily available and inexpensive as vitamins on Amazon.  

Hope Springs Eternal.  

Blessings are EVERYWHERE.  Be open.  Look for them.  

UPDATE:  The research indicates that the MTHFR mutation may be only 1 possible cause of HEDS out of a variety.  So, not definitively the only cause.  But one that can be treated.  

Treatment for Hypermobile EDS

In April 2023, Tulane Medical School released the news that the genetic marker for hypermobile Ehlers-Danlos Syndrome has been identified.  The cause is now known.  Which also means the treatment is now known.    I didn't stumble across this information until August 2023.  I hadn't gone looking for new research into my illness.  I hadn't held any hope that there might be a treatment for it in my lifetime.  I stumbled upon the article.  

I believe in the treatment because I've had a personal experience with a "sister" treatment.  In 2008, during my long stint as undiagnosed, I thought I'd figured out that I had a B-12 deficiency.  I took methylated B-12 for 14 months.  I was WELL for those months.  I finished college.  I got married.  Many, many joyful memories.  But, a flare brought everything crashing down and soon I had to drop out of the PhD program and allow for my illness.  I was left thinking I must've been wrong about the vitamin after all.  

Now, the treatment identified for HEDS is methylated B-9.  Which makes so much sense to me.  And I have so much gratitude that the answer doesn't need a prior authorization, or an office visit.  It's not an experimental drug or an expensive test.  It's an over-the-counter, readily-available vitamin.   In the research, it is still being labeled as a "possible cause and possible treatment", of course.  But, I have memories of how well I was on methylcobalmanim.  I know this will help me.  How much?  Who knows?  If it can reduce the number of days I have to have a migraine, I win.  If it can reduce some dosages or even some medications altogether, I win.   Even if the hope of improvement positively affects my quality of life, I win.  I just WIN.  And keep winning.   

I do have the MTHFR genetic mutation.  I have been taking the methylated folate for 9 days now.  I've had only 1 migraine in that time, which did respond to meds and only lasted a few hours.  I feel WELL.  I feel like MYSELF.  

I don't have any way of knowing if a flare of symptoms will break through my new-found wellness.  It certainly could, at any time.  But also, it might not.  That right there changes life.  It might not.  If it does, I'll be able to handle it as I've been living with the disease untreated for 18.5 years.  But what if there's not another flare?  What if this nutrient does everything it could??  What if?  

I have felt zero pain in the 9 days on the vitamin.  None.  I can think clearly.  I can digest food more easily.  No anxiety.  Just the one migraine that was only a 5 on the scale and lasted only a few hours.  

Fellow Zebras, there is no reason not to hope.  We're being studied.  We're being helped.  

Blessings are EVERYWHERE.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10122021/

https://www.painnewsnetwork.org/stories/2023/4/12/researchers-find-cause-and-possible-treatment-for-hypermobile-ehlers-danlos?fbclid=IwAR3sU-xGgzgRvAuIaUNmTo7mUu_jsKjdQ8e3E4dymp2OcWnuZI8LyXKfpb8