Low Blood Pressure

[GardenGal]

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?

[yogini]

Have you tried compression stockings?

[Guest ANCY]

Mine goes that low and lower frequently. Although other times I have issues with hypertension, my body is wacky lol! On days I am sitting at 80s/40s laying down then I tend to bounce around more drastically with my blood pressure when I'm sitting or standing, which causes me to loose consciousness. When I'm unconscious a typical reading is around 50/30. My cardiologist does not like to see me that sitting that low, or unconscious with it at 50s/30s but... I still have trouble despite using Florinef, midodrine at 20mg 5 x a day, IV fluids, pacemaker and of course salt and as much fluid as I can through my feeding tube. So there's not a whole lot more we can do at this point... He has told me that as long as I'm not out for a long period of time it's not super risky in terms of a stroke but of course it's not good either. Recently though times have been longer, some greater than 10 minutes unconscious. We have only recently started the IV fluids as a treatment for my blood pressure and it does look promising however still does not fix 100% of the problem. Obviously each person is Diffrent and then there are changes throughout a life that make it difficult to always come to a good treatment plan. I don't really have an answer, obviously still pursuing options myself, just wanted you to know you're not alone! Hang in there and hope you find answers soon.

[GardenGal]

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. 

[Guest ANCY]

Thanks Kate for the prayers! I'm glad you are able to do IV fluids and find them helpful. It's nice when you can do them at home, at least it doesn't interrupt your day quite as much lol! We live 55 minutes away from the hospital where we do my infusions so getting fluids is a 4 hour ordeal most days. Because of my history of infection another PICC or Port is not a good option for me. I do love living in the country though, especially the peace and beauty we are surrounded with at our house, makes it worth it, most of the time anyway lol!

Why is your cardio wanting a feeding tube? Is it for fluid's sake? I have a love hate relationship with mine, really couldn't do without it right now though. The balloon that holds the tube in place is always migrating to the surface and I only get about 6 weeks until it's trying to push through the stoma, and then I have to go in to IR and get it replaced. They did try and pull it before when I had a short period of doing better but a year later they had to place another one. My current GI does not want it pulled until I'm stable for a year without needing it at all.

  I'm not sure on the florinef... I have been on it for years and don't think I'd do well without it. I do have trouble catching things going around, I'm probably not exposed to as much as you though. My family, especially my mom, guard over me to protect from exposure when I'm at church and my family is super careful not to pass germs on to me when they are sick. Doctor's offices and hospitals are probably where I get exposed the most as my outings are limited to appointments and church. I still do get sick frequently unfortunately, but I also have an IgA deficiency and an undetermined autoimmune something going on. So I am not sure that the florinef is really the culprit of my getting sick. It is, after all, a pretty minute dose comparatively. 

I hope you start feeling a little better soon and find some answers too. Good luck with the stockings! I find they help but I don't put them on myself, I have to have my sister help me because of my back infection.

[GardenGal]

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. 

[Guest ANCY]

My IgA deficiency is a new diagnosis, my GI Dr is actually the one who ordered it because he wanted to get to the bottom of my frequent infections. IgA is one of your first defenses and is found in the mucosal linings of the body. Making more frequent infections in sinuses, respiratory, gut, eyes and so on. My neuro would like me to see an imunologist about it but haven't gotten to one yet. Already have so many appointments so kind of waiting for a few things to settle down first.

I hope you are feeling a little better and your blood pressure has come up!