#autonomicdysfunction

I was wondering if anyone might be willing to help me out to get a few things. We have been having alot of issues with mobility lately and other things and I am in need of some things.

1. A pillow for neck support, i have been having a very hard time holding my head up during my episodes which has led to me overstretching and hurting my neck. We have been attempting to use a rolled up towel behind my neck but it isnt the most comfortable and doesnt always stay so a pillow for neck support is important right now.

2. My Occupational therapist has recommended a white sensory brush. She has been using it in our sessions and it has been very heppful. Brushing myself with it when I am able or being brushed with it by someone else helps to calm the nervous system down when I am in sensory overload, calming me down in sensory overload attacks is very important as this can cause me to have seizures if we don't calm me down in time.

3. We are trying very hard to switch me over from disposable briefs to cloth briefs as they are more eco friendly, they will save us money in the long term as they can be reused and they are not as harsh on the skin, unfortunately I do not have a washer or dryer in home so we need enough briefs and inserts to last me roughly a 2 week period which is how often we make laundromat trips.

4. Disposable briefs are on the list as until we have enough washable ones we will have to use these in the mean time when we run out in between wash runs, i do have some but unfortunately due to my mobility issues increasing I have gained weight and no longer fit the Medium size briefs we have. We are using them to get us through at the moment as I cant afford more but they are digging in to my skin and causing alot of discomfort.

Thankyou in advance to anyone who is able to help, if you can't I understand. I have nothing to offer as a gesture of appreciation other than a thankyou and to offer my gratitude, thankyou all so much for always helping me out and trying to support me, I have shared a link to my list and anything helps!!!

I will try to keep everyone updated on my health as best I can, my paralysis episodes have become quite severe lately, I used to have movement in my hands and fingers during them which I no longer have, I also have been losing my ability to speak, swallow, use my tongue at all during the episodes but we are going to an appt tomorrow to discuss this with my doctor.

Apparently, I have a rare genetic connective tissue disorder called Hypermobile Ehlers Danlos Syndrome, he was able to diagnose this based off of a 30 minute physical evaluation and my medical history, that is literally all it would have taken for another doctor to figure it out, hEDS itself explains why I have been dislocating/subluxing joints hyperextending/spraining and tearing muscles and ligaments for literally as long as I can remember. But you don't just have connective tissue in your joints, there is connective tissue in the entire body!!!!! In your head (this is why I am so prone to concussions) in your organs (which causes them to sag and makes things like digesting food difficult) etc.

hEDS alone does not explain everything but when it was confirmed today that it was paired with Autonomic Dysfunction we finally got some insight into what is going on!!!!

First off, we learned recently that my seizure/paralysis episodes are triggered by cardiac events. That is, I go tachycardic prior to an episode, my heart rate jumps from resting to 170 in about 3 seconds.

This is because the Autonomic Nervous System (which controls involuntary body functions i.e:

dizziness and fainting upon standing up, or orthostatic hypotension

an inability to alter heart rate with exercise, or exercise intolerance

sweating abnormalities, which could alternate between sweating too much and not sweating enough

digestive difficulties, such as a loss of appetite, bloating, diarrhea, constipation, or difficulty swallowing

urinary problems, such as difficulty starting urination, incontinence, and incomplete emptying of the bladder, bladder retention

vision problems, such as blurry vision or an inability of the pupils to react to light quickly)

You can experience any or all of these symptoms depending on the cause, and the effects may be mild to severe. Symptoms such as tremors, shaking, and muscle weakness may occur due to certain types of autonomic dysfunction as well.

We also learned today that tranquilizers and nerve relaxers amplify these episodes of paralysis and shaking because it over relaxes the autonomic nervous system which explains why my episodes would last so long and become so severe because in the past doctors were treating me for "psychogenic Neurological symptoms" with anxiety meds, nerve relaxers and tranquilizers.

I was continously sent to PT and OT with no results and worsening symptoms, we learned this is because my body cannot regulate its temperature so I have an exercise intolerance, I work out, do strengthening exercises etc and get hot (as you do in a work out) but my body cant cool itself down so then the ANS freaks out and i have episodes. (We now have a recommendation and referral for hydro-therapy)

We also learned that I have NOT been having seizures this entire time, I have been having "shaking episodes" which is another more severe symptom of autonomic dysfunction.

Autonomic dysfunction is now also being investigated for the cause of my GI problems. My doctor believes I have autonomic esoughagial dysfunction with an R wave meaning my esoughagus is working in the wrong direction!!!! Testing for this has now also been recommended and ordered!!!!

Unfortunately we did also learn that there is not a cure BUT now that we know the problem we can work at preventing episodes and symptom management (trying to keep me cooled of for example) we also learned ways to get me out of an episode of paralysis by "shocking the nervous system" by using ice baths, smelling salts, pain stimulation etc.

We have in no way fixxed the issues at this point but today we actually got answers and validation and I consider that alone a blessing.

In an effort yo manage symptoms there are some things I need, ai get what I am able to when I have the money but I do not make much on disability so if anyone wants to help ojt woth items on my home health wishlist zi would very much appreciate it. I will link the list here. Thanks everyone for the continues support and encouragement.

I’m living with progressive MS and severe autonomic dysfunction driven by histamine reactions.

This isn’t just illness. It’s being ignored, delayed, and passed around a system that won’t act.