Nymph

Love epigenetics! It will eventually be a huge source for therapeutic options for many different diseases caused by a combination of genetic traits and environmental triggers. I am glad to see that this is happening with POTS.... impressive progress for a "new" disorder! (relatively speaking)

I'm getting an MRI next week to check out possible seizure activity and autoimmune damage.

Thanks, Don and Corina! So far this has only happened the one time, and the more I think about it the more I think I may be having partial seizures, most of which are either olfactory hallucinations or deja-vu types. But if this is happening in different parts of my brain with different incidents then anything could happen! I wore a pad today because we were taking the kids on a field trip. Ironically the field trip was to a self-contained special education school where all of the students are probably incontinent! I fit right in.   But today I was fine other than some usual POTS symptoms and fatigue from a crazy week. I guess I am about to launch into a new diagnostic journey and trying to psych myself up for it. I need to start a new job search at the same time and feeling totally overwhelmed by that. Good to know about the herbs, Don. I have a friend with a colostomy... I guess I could ask her about that. I always wondered how they deal with the odors!

Sorry this is happening to you, too. I have not had any particular bladder problems, except maybe stopping before fully emptying and I have to push to start up again. I haven't even noticed that lately. Not sure. Honestly, I hope I am not having seizures and that there is some other explanation. But what can be done? I know that this is frustrating! I sure hope we find answers. I am seeing a neuro and getting a workup. Will share when I find out anything.

Good to know! Maybe I'll give that a try this summer.

Talked to my dad (who's a neuro) and we think maybe a partial seizure. Actually I have a lot of symptoms that could be chalked up to partial seizure, but it's hard to dx. I don't think that he has ever tried to dx it because he doesn't want to ruin my life. I'd lose my driving license. But now I have a neuro appt about this so we'll see,

Katie, thanks for your reply! Yes, it really does something to your sense of self, right? I had about a day of straight-up denial and then I decided to post about it on my Sjogren's forum, tell my sister, tell my doctor, and post here. Just doing that helps, because it's out there and I am doing something about it.

Thanks for mentioning MCAD. I have that too and didn't even think of it as a possible cause. Went straight to autoimmune spinal lesions, lol. Guess I should call that doc, too. 

Hi all,

Well, I haven't been here in so long since I've been doing so "well..."

Actually it's amazing. I have been able to teach full time and have only greyed out/ seen stars a handful of times.

And then I got into a little Sjogren's flare, caught a virus, was home, off of work, watching Netflix in bed, when I went to the bathroom and there was a small but significant piece of stool in my underwear! I had no idea!!!

Now, I have frequent diarrhea coinciding with POTS and a couple of times THAT has happened... but never solid! And what's up with not even knowing?!?!? Now I'm really paranoid.

Kinda freaking out here. 

I searched and know that a few of you have experienced this. Can you tell me whether you think it was a weird dysautonomia fluke or is my spinal cord slowly disintegrating or something? Apparently you can get lesions with Sjogren's. So I am freaking about adult diapers and very expensive immunosuppresants in my future. A future that also happens to include a search for a new job since I'm leaving my school. 

Help?

Nymph

I used to take peppermint Altoids daily for an almost constant low grade nausea. When I stopped eating gluten it went away. Now I only use the Altoids for motion sickness. Amazing stuff.

I was given a Lifestyler Cardiofit from an assisted living center.   It it not quite a classic rowing machine because you sit up higher, so not the best for more extreme dysautonomia but fine for me. I find that I develop nerve entraptment issues in the shoulders, however, from the repetitive motion. So I have rigged a strap around my back as a work-around to using my arms. In other words, I think it's just the basic motion that is necessary and the exact machine is probably not that important. If I had not gotten mine for free, I would have looked for a used model on Craigslist.

Wow, Dizzy, I am so sorry that your daughter, and you, are going through this. It sounds like a total nightmare! It can take so long to diagnose these things. A good doc will start to treat with the more general treatments regardless, and it sounds like that is what your is doing. I am not sure about scleroderma. I know it has some crossover symptoms with Sjogren's but that's about all I know. From years of being on Sjogren's forums I have never heard of anything like your daughter's case. I really hope that you find effective treatments for her soon. I know that IVIG can be very hard to obtain, but it sounds like it may be warranted in her case. 

hugs,

Nymph

Have you made any diagnosis progress yet?

I have POTS and Sjogren's, which is closely related to lupus. Also mast cell (MCAD). I likely also have EDS-H but have not pursued a diagnosis. Getting your daughter's autoimmunity under control, if that is her issue, should help significantly. For me, any immune activation triggers my POTS, so keeping that under control is key.

Good luck!

Melatonin + Sentra PM. The Sentra PM was recommended to me by my allergist/immunologist to counteract excessive histamine in my body due to MCAD keeping me awake. I also have Flux installed on my computer to protect me from blue light in the evenings. These things have helped a lot and I now only have insomnia when I am particularly anxious about something.

Hope it helps! I am very impressed with it so far (2 mo). To me, just getting better sleep makes the difference between barely functional and mostly functional - and I enjoy life more, too!

I decided against the Mestinon for now. Doing pretty well generally, adn better since I found a more effective method for my quercetin and started the Sentra PM. THink I won't need anything else for awhile. Finger crossed! Glad it seems to be helping you all!

Kaitlyn, thanks so much for the GREAT advice! I will have to do that.

It is so expensive! I just get frustrated sometimes. Before the price of my anti-rheumatic med went up again it was not much more expensive than the salt tabs! To me that is ridiculous. It really adds up. I just need to train myself to drink salt water.

Thanks, Dizzy. I think that those are cheaper per pill, but each pill is only half a gram or so. I will check on it.

Does anyone know a cheaper source of salt tabs? I take at least four a day. The 1000 count, 1 g tabas that I buy have gone up to $113! This for essentially a kilo of salt! I am considering just learning to down plain old table salt in H2O, but the thought of a teaspoon at a time makes me gag. With the tabs I can take 2 g in the am, 2 in the pm, and just take as needed during the day. Anyone have a cheaper source?

I used to bruise all the time just from getting in and out of my car. I started taking Vit K2 and it resolved. I don't think it was directly related to pooling but started around the same times that various symptoms were either starting or worsening.

My pupils were totally normal during my migraine. I guess I'll bring it up to my opthalmologist when I see him.

I had a different problem with Adderall. It made me extremely sleepy - struggling to keep my eyes open. I quit taking taking it, as that was the opposite of what I needed! Isn't it funny how vastly different our reactions can be!

I drink licorice tea daily and find that has an effect. If I miss a day I feel it.

Katie, please let us know about your mestinon trial! I am on the fence about it presently but need to decide soon whether to do it.

I did not feel like I had any visual effects the day it was observed. I actually have a migraine right now (wearing sunglasses and ear plugs indoors) so I will go check it out in a little bit. I have blurred vision sometimes but again had no problem the day it was happening. 

Thanks for your replies!

Dizzy, I have never been tested for mito, but my symptoms tend to be mild and/or episodic and I have been told that does not fit the profile, although my brother-in-law thought that might be my issue.

Mat, no, I don't think that physical exertion increases those particular symptoms. It does sometimes bring on joint pain for me. I actually have no idea how often my pupils do their weird thing. I would have to check them constantly, and that sounds like something I would have done when I was first Dx'ed but now not interested! That's just me. If it meant anything in particular I would consider monitoring it. Weird. It seems like that sort of thing would be constant, not episodic.

Katy, I wanted to follow up on this because I discovered something new! A friend of mine told me that quercetin is much more effective in an oil-based formula, because it's oil-soluble. Apparently there is a brand that comes this way but it's really expensive. So she said that she just breaks open the capsule and dissolves it in oil. Well, I tried this just mixing it with a little olive oil. I have done this for my last three doses (day and a half) and I am noticing a big difference! My neck has almost stopped itching and my nasal congestion is much better, and this in a week where my pollen allergies have been uncontrolled with even an extra dose of my antihistamine. Thought I'd let you know, since it's an easy fix.