GardenGal

So hard. So scary and yucky. I"m sorry. I get bigeminy, SVT and PVCs/PACs... It used to be a LOT worse. It's icky. And while, yes, people live with frequent PVCs on an ongoing basis, I think it still probably indicates all is not as it should be, and not helpful for your body. I think what's made the difference for me is managing food intolerances. Especially milk, though gluten sets me off too. So while I still have them when I choose to have milk, I am so so thankful that it's so much rarer now rather than all the time. By the way, for me I have still been able to eat milk fats (butter, cream, sour cream), but have to avoid milk proteins... I do tolerate some hard cheeses (like parmesan and hard cheddar). I think it might be the stability of the casens. Anyway, I don't know if trying some diet things would help for you or not, but for me it's been such a relief! I feel so much better I hardly even want those things any more because of how I know I'll feel. So while it was hard up front, am so relieved to have a normal heart rate and rhythm a lot of the time.

Oh, Dancer65 those times lost in the view are life giving are they not:-). As my world shrinks in some ways, I am often so thankful, renewed and finding joy in things that I would have just overlooked and been to harried to appreciate in another season in my life. What is an upside down house? WinterSnow I like your vinegar idea! And am inspired to do some purging of my own. Especially my closet. Those precious seconds standing up just after waking are best spent making a delicious french press of joy then gasping for breath looking for something presentable to wear tucked under the piles of old clothes that I never put on and never get rid of. Pistol, I grieve with you and relate keenly to trying to explain/respond to why I can't do (fill-in the blank) with my sweet children after doing something like sweeping or cleaning out the car. Today I rested most of the morning, but then enjoyed a beautiful dinner with my family and a game of SORRY. Am thankful to be able to choose and do these small things that mean so much!

So, I do some funny things to try to clean around here.... crawling around with baby wipes on the bathroom floor, using a mini dust buster in the living room.... AAaaaaaaand, what other secrets should I disclose of the odd positions and tools I've tried in my desperation to maintain some kind of control and sanitation around this place? And as I fight to make home a refuge not a prison, I find it's the small things that make such a difference in my day. The mint growing on my windowsill, the pretty broken tea cup my first grader uses when we have tea parties, and my blue easy chair by the french doors where I can gaze at the pine trees and humming birds. Would love to hear from you all. What are the funny and beautiful ways that you battle to create peace/cleanliness/joy in your home space?

OOO!!!!!! It came!!! So sorry was not as helpful as last time, but ya, sure sounds like you were quite dehydrated. Glad you were able to eat some. Terrible isn't it. Sometimes I feel like I've gotta eat or everything is worse, but eating makes it worse... sigh. I'm pretty sure I would starve to death without cheese toast. Sooooo, I don't know that this is a 'good' way to do it, but in the third world, they nuke a bag in the microwave 1minute each side, and give it a good shake. Obviously the whole microwaving plastic around something I'm putting into veins is suboptimal, but it works and I've been known to do so when needed. Does the heating pack work? Hadn't thought of that. Good idea! Maybe I'll try it! Hey, question, you don't take desmopressin do you? Having some symptoms I'm trying to figure out with fluids/sodium, etc....

yaaaaaay!!!! Did you get it? How you feeling?

Anybody have eye problems with licorice? Trying to determine if it's related to any of my supplements/meds, or if it's just me.

WHAT!!!!! Are you SERIOUS! I am so so sorry. Wonderful that your husband can do it for you!!!

Oh my that sounds super frustrating. Just sent you a message, before I saw this note :-)

I used to take 7.5-10 mg 3 times a day. Now use 2.5 as needed, like if I need to go to the store.... but can go a week or two between times taking it... For me that's working for now, and I don't miss all the side effects. My cardio said it was fine to use it as needed.

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I do hydration at home that is sent to me by mail through CVS Corum. I've had them mail to me in various states, from various branches. Though getting orders through has really been a pain, it has worked and been a life saver! If you want to continue by private message I can tell you the supplies I use, etc. (yes, getting the right catheters in the right gauge, etc has not always been smooth). Do you have a port? Doing peripheral lines? I'm working on getting orders etc transferred to a providence distributer... we'll see how that goes. So far, so good. Hope it works for you. Has been SO SO helpful to just run a litter at home over the last several years if I need to rather than relying on on an infusion centre. Hope it works out for you!

I have cardiac chest pain and with it feeling like I can't catch my breath. NTG helps a lot with the breathing when this happens, but my cardio thought it may make my systemic symptoms worse??? The gastroporesis used to be terrible, but am thankful to have a lot of improvement in that area. I'm sorry you are dealing with it.

OK, thanks for the recommendation. I find myself snapping at my kids, etc when they are making a little bit of noise (normal kids stuff) when I'm feeling overwhelmed, and we all may be more peaceful if I got some.

Well, not a lot of input, but certainly commiseration and my own trial and error! Thanks for confirming that I am not crazy :-)! The buzzing, panic feeling when I can't handle any more sensory input is frankly terrifying... And for me, If I ignore it, it leads to inability to control muscles, and muscle spasm on the right side of my body and weakness in the muscles of the L side of my face and neck. There have been some times that this has lead to months of trouble swallowing and limping, etc. (like a stroke almost???). All that to say, when I start to feel the overwhelmed and inability to manage sensory input, I take it seriously. When I start to feel it, I retreat to a silent dark room, usually in bed curled up with my kindle. I've started to do this a to quicker than I used to. For me, 'toughing it out' just doesn't work... it gets worse,and then physically effects my body in the long run (weather or not my neurologist etc. understand this)... I have noted that since I've realised some food sensitivities and eliminated these things, I've had drastic improvement. For me, eggs are my biggest trigger. I had IgE and IgG testing done - I think these are a lot more likely to precipitate neurological responses (often days after even), than classic IgA allergies (like what causes rash, hives, etc). I also had a nutrition response therapist do muscle testing, both the blood testing and the response therapist identified the eggs, and I thought... well sounds a bit wacky, but it's worth a try, so I've done, well like 5 trials. And it's quite drastic actually. I also find that when I don't take my desmopressin and am flushing fluids and nutrients the sensory overload is worse, and that when I do my IV saline, it improves... Don't know if that's just general improvement that causes a cascade effect, or if there's something more direct, it's just my experience. How was the grocery store? Hope you were able to enjoy getting out. PS: What kind of earphones do you use? Been thinking of getting some, but haven't tried any.

Can you tell me more about this?? Or how to get more info on it? I had terrifying nerve problems on a mestanon trial, and some of the symptoms have continued. Have been curious about it ever since. I have wondered if it was an indication that the underlying issues for my autonomic neuropathy were neurotransmitter driven... but perhaps it's something like this instead??

When my sodium feels wonky I call my doc for labs. When things get real sketchy I do home infusion, atlas then I know the volume I'm getting is Isotonic. That's been a life saver!!! So thankful for the infusions. Have you wondered if you reflux and constipation stuff is autonomically driven? Were you having some more testing this month? I feel like I remember that from another post? best of luck! PS: I'm trying a combo of licorice and the desmopressin at lower doses now. When I was doing both I had a lot of frontal head pressure, blurred vision, etc. So... we'll see...

Missy M, thank you! I want to try that! Makes sense!

Yuuuuup. An inch behind my left eye

I realised my fluid volume was crazy when I did a couple 24 hour urine collections also and was peeing like 8 litres in 24 hours. That was several years ago, and i think it's improved some....But my Cardio started me on the desmopressin for the OI. It does help the winded/tachy stuff for me, and over all has helped a lot with the feeling of being nutritionally depleted. I did the fluid challenge test for DI and my numbers were right along the boarder for central DI, though my vasopressin was undetectable (I hear that can be 'normal' however)..... I don't remember having renin aldosterone levels done, so that's an angle that I should probably consider. Thanks for that. I'd be interested to hear how you do with the fludrocortisone. I've avoided it because of the immune component, but perhaps should reconsider if it does turn out the headaches are from the desmopressin :-(. What other autonomic symptoms do you have?

thanks guys. Appreciate the feedback. I do get headaches from the mitodrine, and am sorry to hear others have had such bad experiences KiminOrlando and Jan, and DizzyGirl's daughter. For me the mitodrine headaches are migraine-like. My cardio said it was OK to use it intermittently so I use it when I go shopping or something to make it through the standing, not taking it all the time. The postural headaches are happening when I'm not taking it actually and I wonder if it's rebound??/. Yes, I've wondered about the desmopressin and ICP stuff too, but my doc kinda scratched his head when I tried to talk to him about it (thanks for affirming that this concept is not nuts Bombsh3ll :-). The postural element of it really scares me, so the last week or so I've backed off on the desmopressin, but my other symptoms have gotten worse. hmmmmmm what to do? On a brighter note, it was SUNNY and warm today, and I had a blast watching my kids ride their bikes!

Do others have postural headaches? Mine start if I sleep in to late or lay down in the day: excruciating headache when sitting or laying down and goings away or is much improved within a minute of standing up... Well those of you with OI know how well that goes over. I'm jumping up and sitting down like a jack-in-the-box. Can't breathe and pre-syncopal on my feet, terrible pain sitting down. Anyway, I've been messing with my medications to see if any of them are contributing, especially the mitodrine and desmopressin. Thoughts? Have others not here found them contributing to these types of headaches?

Hi bombshell. How you doing? We'll I haven't done licorice/florinef, but am doing a similar thing with licorice and desmopressin. Lots of issues with fluid volume, mine may be more vasopressin rather than renin driven however (not sure). I imagine you have times when your urine volumes are really high? Can I ask how/if this effects muscle weakness or cramping for you? I've cut my desmopressin down to about a third of my normal dose... and am struggling with theses. Not sure if they're related or not. thoughts?

Good idea, over all the muscle problems (weakness and pain) when the doses were wearing off (arms and back also not just throat), that I weaned off of it after several weeks even though it was helping with orthostatic intolerance... I'm glad it's been helpful for you however

I have the same question. Mine is different from generalised weakness however, it's like something 'runs out' or a nerve impulse doesn't travel.. It's hard to explain. Waking up gagging, inability to control muscles for breathing (as in watching my oxygen saturation go down on my home oximeter).... usually happens at night first arms then throat and chest muscles become involved. The first I remember it was when I was on a trial of mestanon. Whenever the dose would begin to wear off I would get this terrifying weakness. Though over all the mestanon made me more functional (able to stand/walk).. it wasn't worth the inability to control my breathing, etc that started an hour or two before my next dose was due, and I quit taking it, but the weakness symptoms have remained. My specialists have kinda waved this off as the beginnings of 'cholinergic crisis'... but I don't think that's it because it was when the mestanon would wear off not when it peaked... It does make me wonder however, if it's neurotransmitter driven. Honestly I don't know, and it's one of my most confusing/terrifying symptoms. Ideas all? It's like I can't move that body part... Like my husband putting my PJs on and laying me down, and then waking up two hours later from a dead sleep gagging cuz my throat muscles aren't working right.

perhaps it depends on your own body? And you might ask the place your getting it for an ingredient list and do some research. I avoid getting the flu shot because my neurological symptoms feel so autoimmune driven. They all include some ingredients that irritate the immune system intentionally so that there's sufficient antigen response to build antibody immunity. Common additives (depending on company producing it) include: 1. thimerisol - an organoMERCURY compound. There was huge public concern that this ingredient was causing neurological adverse effects for kids in the MMR vaccine, and so today, paediatric MMR vaccines generally no longer contain it. 2. Formaldehyde (for preservative - scary) 3. Aluminium (because of the huge immune response it causes). 4. Chicken Egg protein (personally I avoid eggs like the plague because of the issues they cause me - I think it's the lysosomes that are in the egg white. The white is meant to protect the yoke from infection - a beautiful thing in nature - and harmless to a normal body, but for someone like me with autoimmune problems, it's BAAAAD news. I don't know if I'm actually doing the right thing or not, but muddling through to try to stay on top of this illusive thing we call 'health'. With all that being said, I do sometimes get the flu shot, because as many of you have expressed so well, influenza with dysautonomia is disaster! So, the post is not to minimise that reality. Personally, I wait a little bit into the season and see what it's like. If it's a year with lots of cases, then you can always get it (it takes 2 weeks to work well after the shot). But if it's a light year or there are other factors, you might think twice. For instance, last year people in our region were getting Influenza A, almost no Influenza B, and a lot of the people who tested positive for it had received the flu shot... so I opted not to get it. Good luck, great question and one I wrestle with every year