Tommyhoney

Hi there, Hope everyone who is dealing with this heatwave is hanging in okay....I have been "down" for almost a month now...Think I'll see about I.V. today. So...I call my Dys. Dr. office yesterday to make an appt for September (out of town) and was told he is no longer there. On top of being so very symptomatic, along with my new symptoms thrown in, now I'm really in a panic- out on a limb so to speak. While my primary, and others here where I live are wonderful and try to understand (read- do what I ask them to do) they, for the most part, know about Dysautonomia, only what I've taught them (along with my Dys Doc of course, not tooting my horn) I just need to know that "everything will be alright," my coping skills are not exactly up to par right now. Thanks for listening

Hi Blondie, I'm very sorry you're feeling like this. It can be overwhelming & frightening, I know. I am experiencing some of the same things myself- on the heels of a sinus, cold thing last month. I think Lieze is right about fluids & rest. I was on Florinef when first diag'd, and after about year could not tolerate it suddenly. Midodrine, I tried for a very short time, and couldn't tolerate either. I wish I had some miracle concoction to help you get through this....or help us all get rid of POTS for that matter....But truly all I can do is wish you gentle healing, and calm for today. Salts, fluids, and rest. Hang in there.

I just saw that I forgot to thank everyone for their help. How rude?! Thanks, everyone.

Hi Everyone, I had a procedure recently, and they had a hard time getting my bp up while in recovery. I have heard, since being dx'd with pots, that there may be problems with anesthesia, but hadn't had the occasion to test the theory. Now that I have I would like to add a paper concerning such to my bag of medical tricks that comes with me to all appointments. On the Dinet "front page" the articles date to 2006- is anyone aware of a new "Anesthesia in POTS Patients, for Dummies" type of write up? I find that a piece of paper goes further than me trying to explain. They usually disregard what I say....actually had a guy put me under while trying to explain what POTS is. Nice. Thanks for any help or direction...hope everyone's having a peaceful type day.

Gentle hugs for you, Firewatcher. Re: "My life has been amputated, but I can still feel it."- Very aptly put. Hope you're able to work through this (for now) very quickly, and peacefully.

Thank you to all of you who helped me with my sinus med questions yesterday. Got in to see primary Dr....who said there is no sign of infection, but here is a prescription for antibiotics if you don't start feeling better in a day or two. Ask my chrio today, on the off chance he may be of some assistance, I actually have more faith in him at this point....he just did a little adjustment and again no answer. Now I don't know, if it is because I have so many strange symptoms at any given time, that this out of wack head is bothering me so badly, but come on....my hearing is in and out, the pain is radiating down my neck a bit- not my throat, my neck....there's fever for me (99, but I'm usually around 95) can someone please tell me if this is a normal sinus thing? brain tumor blocking my ear canal? pasta stuck somewhere from not swallowing correctly? what? My logical brain knows that's it's probably just a cold settling in that side of my head, but I would for once, just like a straight answer from someone in the medical field. Just another minor aggravation with the whole situation, new MA at doc's office, trying to convince me that I did not have a fever- "No matter what your normal body temp is, it has to be over 100 to be considered a fever." What? Thanks for listening, ya'll. I figure at least those of you who read this will understand, having had some, if not all of these situations.

Hi When I was first dx'd (pots)I had this problem terribly....4 months pregnant, lots of pressure and pain after being on my feet all day. My Dys. Dr said it's due to splanic pooling, or blood pooling in the abdomen, as it does in the lower extremities. As I came along on the meds, treatments, lifestyle changes to prevent blood pooling, it seems that decreased in intensity. Last spring I started with gut problems,gastro said it was IBS which is not uncommon with my dx- said to take Align, a new kind of probiotic and I must say that helped me immensely. I have taken probiotics for years, but with this one I can tell a major difference in my gut if I don't take it for a week. Hope your tummy is better soon.

Thanks Ya'll so much. I was having a little meltdown, dealing with what we all normally do- I'm as used to that as you can get I suppose- but throw something like this on top, and I'm a mess. I have a neti pot, and don't use it like I should or I would not be in this situation, I'm sure- Firewatcher- you used it when you had an infection already? I was told not to use it if I was having sinus issues already, but of course a Dr. told me this so I'm always skeptical. ( sorry, I know there are good doctors in existence, I just haven't met many) Anyway, thanks again for being here, when I was in "critical" mode.

Hi Everyone, I hope you're having a "gentle" day. I have what seems to be a terrible sinus infection, and can't get into my PCP for a bit....I need to take something to relieve this pain & pressure, but I remember being told not to take regular otc cold meds, by my dys. dr, due to my tachycardia. Has anyone experienced this, and found something for relief. Sorry I am not new to this, but I can't think clearly enough right now to remember what I've done in the past... Thanks for any help. Tommy

Tearose- I am so sorry you had to endure this, and grateful that despite the pain, you shared your story. It just brings to light, even more, what we face trying to live with this illness. I hope for brighter days for you. Tommy

Hi Housewoea, I have had the vision disturbance that you describe. They are a little different than silent migraines, which I also get. At the onset of this POTS ride, when I was terribly ill, was when it started, and I could not figure out how this was happening when I was lying down. They got so severe, I couldn't sleep because of them. (strange to say, but they continue when I close my eyes) I have never over the years got a definitive answer as to the cause, but I do know that I'm more vulnerable to it when I am overtired. Hang in there, I hope you find some resolve. Tommy

Hi there, Sorry I have no information for you, but after being on the fence about it for quite some time, (my autonomic specialist went on med leave I wasn't sure what I wanted to do) I decided to go ahead. I just got the package, my appointment is in February. I've heard great things, and not so good things- so I'm a little apprehensive. Maybe some folks will chime in. (Am I hijacking your post? sorry) I will let you know how the admission process goes, at least...too overwhelmed to go through the packet right now, next time I feel "ok" I'll address it. Tommy

Hi There, I'm sorry you're having such a hard time. I have what may sound like a silly question....Do you have alot of GI issues? The reason I asked.... When I was first diagnosed, and for sometime after- I did not have GI involvement to speak of. A few months ago, I started having the same flutter you speak of, went to the Cardio, but ended up at the GI doc, it was my stomach, apparently...a few weeks later, it left (thank-you) as mysteriously as it showed up. Still happens every now and then, but not ongoing like it was for awhile. I don't know if that's what's going on with you, but it could be, maybe? Take care- hope you feel better sooner.

So sorry you have to deal with this, try to stay hydrated, the best you can....I too ended up needing an IV before it was over. Healing thoughts to you. Tommy