It’s been over a year since my five ER visits and week-stay at the hospital. I am ready to be proactive again in regards to my health, even as I have lingering post-traumatic stress from the care I received while in hospital, e.g., not believing I was sick, accusing me of creating my symptoms, referring me to psychiatric care, insisting it was Fibromyalgia, refusing to do tests, refusing to keep my hospitalized for care, etc.
Turns out, after a two-hour tilt-table test at the University of Washington Hospital and conclusive evidence read by a specialist that indeed I do have a ‘real’ condition. A condition closely related to POTS Syndrome. The key for me is to keep up my potassium and sodium levels, stay hydrated, and not over-do it. I drink lots of coconut water and take pink Himalayan salt and a variety of supplements. I was also diagnosed with joint hyper-mobility syndrome (possibly EDS) which is a probable cause of my POTS-like Syndrome.
My symptoms prior to going to the ER last year were weight loss, hair loss, loss of appetite, neuropathy of all limbs, autonomic dysfunction (including digestive pain, not being able to sleep or sit up, heart rate of 160 standing/120 sitting), chest pain, mid-back pain, all over fatigue, weakness, shaking, and generalized pain. I’d spent a good month in bed before the symptoms worsened. Also, I had signs of dehydration—white tongue, etc.
It still amazes me the doctors thought I could control my heart rate, and literally make it go from 90 resting to 160 standing and back down to 90 resting. They must have thought I had super powers. Or they just didn’t want to face facts that I might have a RARE condition!
Anyhow, because of the stress of being in and out of hospitals and seeing multiple specialists, I never wanted to see a doctor again in my life. I have since, but not because I wanted to go.
However I am ready now to get some blood work done, after briefly reading about the MTHFR Gene. (Thanks to a reader for telling me about it.) I have been trying remedies for years to rid myself of depression, fatigue, pain, and the like, particularly related to PMDD. This gene could be another piece of the puzzle. And if so, folate treatment could be the answer. I have listed a few links, the first ones that I found that helped me to understand the gene’s role in our bodies.
PMDD, POTS, and EDS (Ehlers Danlos Syndrome) are common with people on the spectrum. I thought this gene was worth mentioning, as well.
I started going back into my far infrared sauna today, too.
Another reader said MTHFR looks like MOTHER F***ER… which made me giggle.
Okay, here are the links. Step-by-step we are finding answers.
If direct links aren’t working, copy and paste.
http://mthfr.net/mthfr-resources/
http://www.doctorbecky.net/mthfr.shtml
Much Love,
Sam
Everyday Asperger's 
Wow. We have a niece with POTS. It plays hell with her. And yes, she and her mom went through nightmares to get it diagnosed.
🙂
MTHFR does look like a truncated dirty word that made me giggle too!
I fully understand PTSD caused by moronic medical staff and the reluctance to be that mistreated again. I hope when you go to get bloodwork for this, you’ll have the elusive good doctors and nurses who’ll pinpoint your problem without giving you grief about it. Best of luck and kindness to you.
thank you very much 🙂
This is fascinating…and I thought the same thing about MTHFR standing for mother f*** Its how I remember it…I have never heard of this but I forwarded on to my therapist who is also a physician. This would make so much sense for many autistics if not myself…I have WEIRD things happen to me a lot and even if I do not carry the gene I know I am wired in a completely different way with unusual problems and reactions…This is DEF looking into ! ( oh and I also always feel better lying down and get easily depleted standing up…but that can also be Fibro related which I have….) hmmmmmm….
thanks for the info!
keep me posted
P.S. I also understand PTSD from medical care. I wonder if most Autistics experience it. I honestly believe if not for my therapist I would never see doctors again…and I have lots of scars from the journey…I wonder if Autistics do more than most…and not just because we are sensitive but because we actually do get treated with disrespect, disdain and general divisiveness…because of how we are and the fact that they usually can’t figures us out and we have unusual symptoms or conditions…
lol i meant dismissiveness….sorry I am taking over your comment section!
(but seriously we should maybe have a support group one day or a protocol written for Autistics FROM autistics that would be respected in the medical communities OR some sort of PTSD support for our specific sort of woes…because it is basically a violation of our essence…the one profession I have the hardest time with is nurses…even more then doctors because I have only ever had ONE good experience that gave me my full autonomy…the rest I had to fight for in one way or another and most never say the vindication that happened when it turned out the third time that there WAS a health concern or issue. For instance I had double pneumonia last summer and knew something was off but I had unusual symptoms – basically I can look healthy when Im not at times- and was sent home over a period of a week and a half and several ER visits. I MADE the one doc take X-rays and they were not happy about it…and then he read it wrong and said it was nothing…and the nurses were happy to tell me that…but they did not witness the call I got a full WEEK and a half later from the radiologists office saying I had double pneumonia and to get on antibiotics….and that was probably one of my lesser traumatic memories…birth being the worst with my first born… Oh the stories! Ok…I am done this time!:)
I appreciate you taking over the comments! You’ve made me feel better just knowing that somewhere out there is a woman who wouldn’t laugh at me for how awful hospital childbirth is. You’re more than welcome to come and vent to me about your issues with them. Er, if you’re able to talk about them. Some things I’ve been through I can’t even type about without freezing up. I wonder if there is a group for autistics coping with PTSD? Not that mine’s been diagnosed, I got stuck with the lazy nurse who thought if you don’t have depression it doesn’t matter if you match the whole freakin’ list for PTSD.
for me it’s hard because I am intuitive, empathic, and know my body, and when others don’t believe me I can feel their probing judgment and disbelief. 🙂
I have learnt a lot from this post, had never heard of MTHFR Gene or POTS syndrome. Enlightening! Thank you.
I wonder about the link between MTHFR and depression? I feel a tingling. I might be on the right track.
I will look for methyl folate and try to eat more romaine lettuce, spinach, asparagus, turnip greens, mustard greens, parsley, collard greens, broccoli, cauliflower, beets, and lentils. Chicken liver is excellent too. See if I feel any different.
🙂
http://kellybroganmd.com/resources/#environmental
Samantha, you are sounding healthy & informed! We are exploring health issues & information to keep us healthy as we age. I think we became FB friends about this time when you were struggling in the
hospital and I know how far you’ve come since that time. You are an amazing person & we love you. bcc & geo
thank you sunshine 🙂
Hi Samantha 🙂 Over the years I have been seen in ER at least a half dozen times for panic attacks, and each time I left wondering, “what the heck?!” Since then, though, I have learned so much about myself through your Everyday Aspergers site. I think I speak for so many, when I say, I cannot put into words my gratitude to you, for allowing me the opportunity to see myself more clearly through your expressive writings. I no longer feel quite as alone and lost, and I no longer have to wonder, “why?! Thank you! 🙂 Also, I wanted to mention, that just in the last year, I have been seen in ER twice, due to extremely low blood pressure and dehydration. Both times I was discharged with no explanation as to why that would have happened to me. My blood pressure readings are typically on the higher side and I am someone who pushes drinking water all day, every day! Interestingly though, both times I was definitely on an emotional/ physical overload. Then, I recalled reading somewhere in the midst of your writings/ comments, a discussion about the possibilities of low sodium and potassium levels. I have since found, that by drinking coconut water and, even though I hate to admit it, Gatorade, I am finally feeling, “stabilized”! I have also found that by eating a mostly raw food diet, with a concentration of foods especially rich in glutathione, that I feel much better overall. Samantha, once again, I would like to say thank you! 🙂
wonderful 🙂 what foods are high in glutathione?
i too have eds and pots. took me over twenty years for a correct diagnoses. after being diagnosed with numerous conditions, usually anxiety and depression I never seemed to get passed the doctors radar for a ‘real condition’ once they read on my notes anxiety and depression. 5 years down the line now, they think it might be muscular dystrophy, with eds and pots, or on its own. thanks for the links will check them out.
really enjoy reading your blog entries, you put into words what I think, yet don’t have the foggy ability to write. x
thank you for your comment 🙂 best wishes to you
Hello again Samantha 🙂 Here is a site that lists some good options rich in the ability to “boost” the body’s glutathione levels… http://blog.radiantlifecatalog.com/bid/62226/7-Ways-to-Boost-Your-Glutathione-raw-foods-vital-whey-and-more
I love turmeric That one I can do… raw milk…yuck… raw eggs … double yuck… meat… ick…. lol Thank you for thinking of me 🙂 I also try to eat mostly organic thanks again
I can well imagine the PTSD from the hospital visit. Awful. I hope you make some headway with all your distressing and unusual combination of symptoms as I have friends with either POTS or EDS who went through hell. I also thought you had abbreviated the M*TH*RF**K*R gene as soon as I read the title of the post! lol
PS. I believe medical personnel will treat you with more respect if you don’t mention the alternative stuff like Himalayan pink salt. And remember to count it as part of your sodium intake!! There are plenty of medical people who understand alternative remedies but you never know who they’re going to be, so tread carefully. [hugs]
thank you for your support Hugs back :0)
How did your testing come back? I was just given the lab slip to get the blood work piece done for MTHFr testing. It sounds like it really is a good possibility for me, but I am so tired of the pain and all the doctors.
I haven’t done it yet 🙂 Best wishes to you
You may know this, but I’ll mention it since I didn’t see it in the post or comments. The testing for MTHFR can be through 23 & Me as a saliva test for $99 and you can order it yourself rather than having a doctor order it. It will also give you the raw data that you can plug into other sites (Genetic Genie for free, LiveWello for $20) to learn about a lot of genes, not just MTHFR. There’s also a facebook page called MTHFR Gene Mutation that’s very helpful (there are others too).
thanks much 🙂