GardenGal

Ha! I love it! Sharp cheeze, seaweed, kefir, chocolate chips

So exciting! Wish i could sit with you and have a piece!! Wonderful!!!!

ANCY, Oh i'm so glad you get the beauty of the country. Such food for the soul! We live rurally, but on the outskirts of a small town and I so enjoy my perch by large glass doors to gaze at the trees :-). My cardio has not mentioned the feeding tube recently. I've been able to gain some weight and keep it on! The migrating balloon must be frustrating! Will you tell me more about your IgA deficiency? I have a slew of IgE and IgG food sensitivities, and wish I understood the autoimmune component to this better. I'm glad you've got a family fighting for you! I will say my husband putting on my compression hoes is a comedy of errors. So funny. And awful. You know how it is. After I wrote last pressures back into the 70s while sitting. Thankfully have had a week or so of improvement. So wish you didn't have to go so far for your infusions! Ug. When I started getting them at an infusion clinic years ago they helped so much, and am really thankful now to be able to do them at home. Though getting orders/supplies can be quite a frustration.

catlady, I'm sorry. Sounds so hard. Some of my symptoms seamed to precipitate after a concussion I had way back in high school. So though I think my underlying issues are familial, I can't help but wonder if there was some brain stem disruption that triggered/flared something that before that was pretty benign. IV fluids, desmopressin, and mitodrine have been helpful for me, but one of the only things I've found that helps when my neck and head are flared up is a hot bath with with rosemary and lavender essential oils. Though I come out dizzy and winded from the BP drop, it can bring my pain from pretty yucky to almost gone. Have you found things that help on the pain front? I'd be curious to know.

Yogini, yes the compression stockings are helpful, but I feel frighteningly awful when I take them off.. and so exhausted by the time I get them on, I'm afraid I'm not as consistent about wearing them as I should be. Thanks for the prod that direction :-). ANCY, thanks for sharing where you are at. Thankfully, when I black out i come right back. sounds like it's been quite rough for you. Praying as I write for internal fortitude and refreshment for you. The home IV fluids are so so helpful for me. I hope you find them so as well. Keeps me out of the ER when things go south. My cardio has threatened tube feedings, but recently have put on some pounds, so am glad for that. Thought on Florinef and immunity? How's it been for you? I was prescribed it but haven't taken it... as on my good days, my work brings me around a lot of ill people and was concerned about that aspect of it.

Have tried different kinds of beef wondering the same thing. I hadn't thought of the hormone/testosterone piece. Thanks for that insight.

Debbie, thank you. I'm sorry I'm just now seeing your post. Thank you for the reassurance and kind words. Things I need to remember. Thank you for sharing your journey.

I have general dysautonomia, diabetes insipidus (fluid wasting not blood sugar) and a small pituitary tumour. I've been relatively stable using IV Saline at home, scheduled desmopressin, and as needed I take mitodrine. Unfortunately, I'm struggling a bit keeping my blood pressure up. This weeks readings look something like 84/75, 83/68 etc... More irregular heart beats and chest pain than normal, and so tired with blurred vision. I guess I'm just wondering, how low is to low? My hunch is to just wait and see. My Doc. is amazing really, but don't know that he's actually going to be able to suggest good ideas for increasing pressure. I have a cardiac cocktail from my naturopath that usually helps with the irregular heart rhythm stuff, but it has niacin and am nervous to take it lest it tank my pressure more. I've also been having some trouble with my sodium balance so I'm nervous about IV fluids.. Feel a bit stuck. Ideas? My gut says to ride the wave and wait, but how low for how long is too low, and is there anything else I can/should be doing? FYI: I have had my blood pressure dip very low (like as in 70 systolically), and been hospitalised with a "TIA" that resulted in 8 months of right sided weakness, so this doesn't help with my nervousness about it - not to mention trying to manage 2 little kids (I want them to have a kind, engaged mommy, not one who lays on the couch, who can't see straight :-(. Any ideas? Advice?

"She's a Heart Stopper" -Dierks Bentley. An especially pertinent line reads: "Droppin' them dead on the dance floor Somebody better call a doctor She's a little heart stopper"

Thanks for 'hearing me' and offering helpful thoughts all. I think a lot of what scares me is that it feels SOOOO physical. Just these periods of time (lasting a couple hours or a couple days where I'm strangely hot (may run a fever), and feel this crazy rage... don't know how to sort it out. Ashc, thanks for the ideas :-). I often find praying in my flower garden, or when all else fails, locking myself in my room for some mommy time out so as not to lash out at the kids is helpful. p8d: May you be strong and courageous :-) - we'll do it together! May Monday be helpful. Don't know what you were seeing a gyn for, but my dysautonomia came to a head after a delivery 6 years ago. And though the symptoms are really hard, it was helpful to know more what was going on and begin to have tools to care for myself.

Thanks BuffRockChick. I'll start checking my pressure when it's going on. My BP is usually so low, it hadn't crossed my mind to do so, but now I'm curious. I'm happy for you that the leggings were helpful! Ug are they a pain or what! Your situation in the store sounds seriously frustrating (and familiar - shall we laugh or cry :-0). Brain fog leads to longer walking in circles in the store leads to curled up in a ball in the car until one can safely drive home without injuring the bouncing wound up exhausted children in the back seat.

Tonight I feel angry. Not over any particular thing. Overall I'm quite thankful for a beautiful family and loving friends and today have enjoyed the sun, been blessed with enough umph to take a short walk with my children and resting with a good book. However, I have periods of time when I feel like I can't control my emotions. Like out of nowhere there's a huge amount of anger. I'm lashing out, especially at my husband. And as I pray through it, and search my brain for a reason... I can't find anying particular... There's just this rage. Frankly, it's not my normal and it scares me. I'm wondering if it's related to eating beef (does that sound crazy?). It also appears that these bouts do not necessarily coincide with the times when my blacking out/GI issues, etc (you know the normal stuff) are flaring up. What happens? Ideas? Do others have this? Have you found any triggers? Any good ideas to changing it's course once it starts? Help!

Dear BuffRockChick :-). Love your name. Your concerns resonate with a lot of my closet fears, and I'd be very interested in any research you find. Though I've heard of reliable research documenting cerebral hypoperfusion, I have not found reliable studies outlining progressive cognitive decline secondary to it. That being said, it makes sense to me. As we know that other forms of restricted cerebral oxygenation (as in an extended code situation) or hypo perfusion (as with stroke) obviously cause cognitive impairment... why would hypo perfusion over time as with dysautonomia not cause the same outcome? Though the mechanism of poor blood flow (pooling in lower extremities causing cerebral hypertension, cranial vascular spasm, etc) are different, why wouldn't it be the same result? Anyway. I don't mean to be dower. On the same front, I will say that I lived for a long time with an incredible amount of brain fog and confusion that has now had significant improvement, for which I am extremely greatful! I probably have not said anything new to you here... just appreciate not being alone in my concern over this and value any input/resources you gather. Best of luck to you, Katie