andybonse

Thanks , I guess I'll let it go and not follow it up worrying myself lol, my echocardiogram was perfect anyways touch wood lol! I went in the first place for horrible shortness of breath at rest, which started last year and now a year later its A LOT BETTER! weird eh? I guess our bodies can adapt

Hey All, Had my repeat 24 hour ecg after 2 years and it showed: 2 PVCS, 6 Supraventricular Ectopics. Episodes of High Take Off, Sagging ST Segements Conclusion said: No Significant Cardiac Pathologies, No follow up required. No Idea what these Sagging ST Segements mean lol

Hey all, Has anyone had their cerebral flood flow tested laying down vs standing at all? I have come to the conslucion my light headedness I experience is due to excessive cerebral / central vasoconstrction, - My HR is generall always normal, or slowish. Especially when I feel bad - BP Normal, sometimes systolic a little higher, but nothing major - Midodrine(vasoconstrictor) makes lightheadedness WORSE and tingles in my arms, which is highly suggestive of reduced blood flow. - Pulse feels smaller, in whole of body including lower body when feeling bad, but very strong when feeling great - Not sure if Florinef helps or makes worse. - Going to do 2 tests, 4 weeks, no florinef, 4 weeks florinef. (I did up the dose to 1 full pill and felt AMAZING for 2 days then back to square 1). - I do drink alcohol 2 times a week, so think that may be actually working against the florinef, depelting the salt thus reducing the blood volume, so I will be holding off of this to see. It seems to happen when I first get up after around 1-2 hours and then off and on all day, If I lay down my BP comes down a little and my brain starts to feel warm and feels nice lol, like in winter when you come in and your hands fill back with blood! Anyone else looked into this, had tests, opinions etc?

I get this, as angina. Not enough blood gets back to the heart when upright, but not due to coronary artery disease. I can exercise stood up get my HR to about 134-150 get angina. Lay down and exercise, HR 150-190 no problems. *****, makes walking places hard because as soon as my HR is up and I vasodilate due to getting hot boom angina woo!!! I get the typical arm pain, jaw, horrible sensation in chest etc and PVC,s I just sit down or lay down and it resolves.

To Add - I do find when I get a common cold, or upper respiratory infection, my breathing is GREAT!?!? LOL? weird!

Hey, I posted a while back about a shortness of breath I get and at rest. I recently had a Lung CT Scan, Pulmonary function tests and a echocardiogram. All Perfect. Which leads me to believe it is my dysautonomia causing the issue. Recently it has improved as have all my symptoms a lot, compared to how I was last year and am going out pretty much everyday. I am also driving again which is pretty cool!!! I have been able to up my florinef which has helped the tachycardia and my head symptoms dramatically. It does drop my potassium so I am going to find out how much potassium supplements I need to hold me on this dose. Last time I thought florinef made me breathing worse, but will soon see, so far so good. So maybe being upright all day everyday has helped symptoms and some sort of adaptation.

I got this years ago when my dysautonomia started and sometimes rarely now, I thought I had MS or something bad. I believe its the tiny blood vessels constricting.

I get angina, yep from lack of blood to my heart, im 23 and I've had Cardiac MRI & MRA, Echocardiogram, ECG, 24 hours ECG, 24 hour bp monitor, Stress ECG, all perfectly normal. Here's the thing, I get it at HR 130-140 standing up exercise or walking particularly when I get hot. When I lay down, I can exercise, get my HR to 190, no angina. It's all POTS with me, my hearts fine just POTS stopping the correct distribution of blood flow as per usual, *****.

I get this when hot, after showers mainly chest and arms, maybe side of abdomen. I also get it if I sit without a top on and get quite cold. It's probably some sort of mast cell issue or vasoconstriction / dilation issues, probable options ?

Hello, I need a filling my tooth is killing lol. I asked if they have the Lidocaine without adrenalin and they do, anyone else had it without adrenalin? Any issues? Work okay?

Thanks guys, I actually find alcohol really helps my symptoms, lol. I can walk with alcohol at heart rate 160bpm but without alcohol at 160bpm I get angina....whaaaat?! haha. I need something for my acid reflux as it makes it sore and makes me feel sick, PPI probably not good for me as it seemed omeprazole made me worse, might re-try zantac again. No tick bites etc, was also tested for Lyme. I will keep getting diff tests I guess!!!

Hey all, I have had shortness of breath at rest on and off, that doesn't really get worse with exercise. It's horrible and can get worse after meals. Sometimes is doesn't though it depends... It has improved lately, omeprazole makes it worse(I've read omeprazole can cause 30% vasoconstrction on the lungs, heart etc.) So I am thinking, central vasoconstriction restricts blood to the lungs to keep blood pressure normal because of the peripheral dilation. This would explain why Midodrine makes me worse as even more constriction etc. I went to see a pulmonologist, and agreed to have the following: High resolution CT Scan without contrast Echocardiogram to make sure the estimated pulmonary arterial pressure is within range to exclude pulmonary hypertension(we don't think its this but have to check) Lung Function tests in a glass box lol She wanted to do a CT Pulmonary Angiogram, but I am not too keen as the contrast dye etc not sure if I'll be allergic or not, so we are either doing this last or not at all. If all tests are normal, we are going to presume its down to the Dysautonomia, which it seems it is anyways. What tests did you have? Anything helped your shortness of breath?

I kind of tried cetirizine and zantac when my symptoms weren't so bad, so going to retry!

Hey James, 23 male here , I have had it since like 18, could still work and do most things didn't know I had it, thought I was just unfit and had heart problems lol. Now it got worse at 21, was house bound in and out of hospital, couldn't sit up. Now I am able to drive again, go out, exercise, go out for meals. I cant walk long distances though. I went to a bonfire last night stood up for a while, but it was pretty cold so the blood will of been taken from my skin increasing the blood pressure aha! I am no where near normal, I still feel light headed going out, and short of breath on and off, but its all improved and I believe its because: Being upright longer, the human body is designed to adapt, more blood, more red blood cells, better heart function etc etc especially a long side the drugs available and exercise. I am no where near how I was when I was 18, but I guess there's the good thing it doesn't kill you. Just think, there are people out there a lot worse, it helps. Only advice I can give it, try exercise regular and build it up more intense as you get fitter, lay down to exercise makes life easier. Try learn to stand up longer and longer. Try the various drugs with your doctor, see what works. Not much for me so far, so trying Octreotide soon, might be the push I need.

I get the same thing with my breathing, all the time its horrible, needing that deep breath, and then sometimes it feels like too much air is in the lungs. Its my main symptom! I think it could be linked to mcas too.

So does this mean, it typically creates a more effective sympathetic nervous system, so rather than like Midodrine an all over vasoconstrictor effect, it would be more selected as the brain would try to constrict the legs as such as a normal person and would have more of an effect doing that job as the Northera is doing what it does? rubbish way for me to ask this just in a slow mood today lol

Hey all, Since I have had bad shortness of breath since florinef .1mg and went down to 0.05mg-0.0.75mg per day...its improved but there still. I have been reading and my bicarbonate levels were 32, which is too high and causes alkalosis which is what is causing my breathing problems! think i may have an answer for it at last we will see!!

I do feel very much clearer and better the next day, thats interesting

Its not a seizure far from it maybe I explained it wrong but I find it difficult to explain my symptoms in even speaking to a doctor! My breathings getting worse again!! I stopped exercising as I got lazy as started to feel better so started again 2 days ago! Man this really does suck :/

One of my worst symptoms, ill be sat there then it will feel like I need a deep breath, cant get it and then it gets tighter inside and I feel weird. Sometimes I get a funny smell in my nose and head feels funny. Its improved significantly since lowering my florinef and exercising, but its still there and its horrible, I cant bare it.

""And you make enough at this to live on? Or is this supplementary to Disability or welfare? Good thread, OP! I've been wondering about this topic myself!"" I make a lot more than I did working full time

Basically, you take items from amazon, put them on ebay copy and paste and up the price to make a profit, minus the fees etc. Eventually you have hundreds on items listed and make an income. Its easy and I find it fun Theres a bit to it which is why theres a course and a team but its not hard to do!!

I work online dropshipping from amazon on ebay, I am part of a course and team which costs me $20 per month and it provides full training its awesome!

Thanks guys, Does Wellbutrin help with light-headedness?

Hello, In bed in the morning my vitals are 120/60 HR 46, movements will send it up such as turning over in bed or moving legs. How do you know if its meant to be this low or not? Cardiologists don't make nothing of it? I dont like the feeling of it been too slow!!! When I sit up its then in the 50's, standing even low like 60-70's. The only time my HR is higher like 100-120 is after a lot of food or very hot...... Don't know what to do really! I feel like my head is constricted and tight so not enough blood flow up there.