RichGotsPots

In 2006 I started to have breathing issues when I was too hot and exerting myself. I went to the ER, they gave me my 1st Albuterol Nebulizer. I had used it on my son for his pneumonia wheezing and it worked, but in the ER it didn't help much and gave me bad palpitations. That's the 1st time I saw my heart rate at 155 bpm just laying down. I checked out my heart, it was fine so I went to a pulmonologist and he said the techy was because of the albuterol. That was a relief but my tachy lasted months not hours. I took some asthma inhaled steriod meds and ignored the tachy. Looking back it was POTS and it just went into remission after 4-5 months. Now that its back the breathing is even worse and so I use Xopanex which is slightly better for tachyness but still only works 10% I've seen people have the tremors on it but I'm used to it. But still I dont take it unless I'm a step away from ER. Taking it longterm is associated with higher death from asthma.. I want to try magnesuim sulfate nebulized

If you go to an autonomic specialist try to go to a Neurological one because they might be able to further rule out neuro-muscular issues too..

I'm really tired of doctors and my family thinking that I'm ill because of anxiety. I think I do have anxiety but it because I'm ill not the other way around. Just like a heart attack patient would have anxiety or anyone else with a major illness would feel. There is a 1 difference between POTS and other illnesses, in that this illness affect our Panic response system (our ANS). So to everyone else it seems like I'm having some kind of panic attack. Frustrating to say the least ugh. I don't make panic expressions on my face though and my sysmptoms all happen progressively, but no one listens.. I was looking up beta-adrenergic hypersensitivity that I saw on one forum members signature and it lead me to a book on Anxiety http://books.google.com/books?id=Lx9hf-3ZJCQC&pg=PA150&lpg=PA150&dq=beta-adrenergic+hypersensitivity&source=bl&ots=WfurAvhM9g&sig=T8sP1FedlZNSyUk67eDCeVNWFnw&hl=en&sa=X&ei=U5wZT8qlG8T00gHpg6DOCw&ved=0CE0Q6AEwBA#v=onepage&q=beta-adrenergic%20hypersensitivity&f=false It's an interesting book, because to summarize, when they talk about beta-adrenegic hypersensitivity they say they tested lowering this hypersensitivity with a beta-blocker before they provoke the panic attack. What they found was that even when they lowered the heart rate with the beta-blocker all of the patients still reported panic attacks. So they concluded that heart rate doesn't seem to regulate the attack and so beta blockers were not helping. For me personally I don't think my heart rate peed would help all of my symptoms if it was lowered to a normal rate. So far I haven't tried any beta-blockers or any other heart lowering meds because of my breathing issues.. But my heart rate usually does lower at night (for example during the day laying I could be 95-105 bpm but at night I can be 80-85 bpm laying), but my symptoms actually seem worse at night, I get very fatigued and have trouble eating a normal meal especially flour based foods ( I only eat salad at night)... Has any panic attack meds helped anyone with their POTS symptoms? I've see that a bunch of people are on some anxiety or SSRI meds. I'm worried to try them because they have a laundry list of side effects and all I need is more symptoms right now :-/ I will say this, when my breathing issues are bad, like ER bad, I do panic and that can make things worse. But the breathing issues never come after a panic, always before. But also I think my POTS makes me more sensitive than I already am and when I'm really ill it's hard to hole back the emotions...

Don't sweat it. I suggest you look for a good specialist even it's a 90 minute drive (make sure they see a lot of Dysautonomia people).

I feel ya. The first thing to do is find POTS specialist in your area. Unfortunately even my POTS specialist is not a Dr Grubb or Mayo clinic, but he does know about Dysautonomia and that helps. He kind of things it's all one illness which isn't great, but better than nothing. I went to on Dr. who sees Dysautonomia patients and can do a Tilt Table Test but he wasn't that knowledgeable. I feel like outside any major autonomic lab setting doctors are just not as informed as we'd wish them to be :-/ So what I do is research all the test I hear about on her and that are listed in some clinical studies and I try to go to different specialist to test for them. So far I have about 6 specialist. And what i do is print out the info on the Dinet.org pages and give it to them and talk to them about how a lot of people with Dysautonomia could have issues with their specialty. Then I list a bunch of test that some people on here have mentioned or that I read about and hope they will understand and test for things... I've been through the same thing with work. I've had major flares since Dec 2010. I lost a good job I had for two years. I was dumb and didn't even think of FMLA, then I finally got a new job after 6 months, that was even better than the last but then had my biggest flare yet and lost that one too Now I'm starting to apply for disability. It doesn't cover anything close to 60% of my salary, more like 10%. I hope you recover soon, but we are all with you so don't feel alone..

my total IgG was 600. Right now I have a Staph infection, probably from being in the hospital or going to the dr. offices. My ENT discovered it, thank God, while he was deep inside my nose looking to see if my polyps are bad. He has me on Levaquin. I had awful mucus, that I've never had before, for about a week prior to him finding it. After 3 days it started to help, it's the fifth day and the mucus comes and goes but is overall, better. So check on the infections. But I've never gotten a lung infection before that I know of. My endo thinks it's low because on prednisone.. I wish I was getting answers that helped my breathing, but I don't have any yet Can this bad of breathing really just be POTS? It's scary not having a rescue medicine that would help what's the point of me going to the ER if they can't help? Tonight my breathing is so bad i probably wont sleep, all because i walked to far down a long hallway.

Hi everyone, I've been MIA for awhile so I wanted to do an update on some test and dr. visits I've had. Hard to know where to begin. I have a dream team of Doctors now, but I'm moving very soon will have to find a new team soon but worth it because it'll be a 1st floor no stairs 1. Immunologist/Allergist- Old but very smart- testing me for allergies, so far no food allergies at all not even gluten. Is testing me for environmental allergies this week. Has done the most blood testing out of all the doctors and so far it came back that I have low IgG subclass 1 and 3. I looked it up and that means I'm prone to lung infection type of things. Also my CD8 was high which means my immune system over reacts. I still have to discuss it further with him and maybe do more testing. Maybe Mast Cell testing.. 2. Endocronologist- Thyroid normal, says she can't do testing for adrenals because I'm on Prednisone and since I'm on it so long I might have adrenal insufficiency now She is going to test for some minor hormonal gland stuff nothing major 3. Nephrologist- just gave blood for him and he ordered a kidney ultrasound but haven't done it yet, will soon. So we'll see what his blood tests show, I now I'm slightly low on creatine. 4. Pulmonologist- On my 3rd doc here. Don't ask lol But so far I got good news, I did a high resolution CT scan and it came back good, no scarring. Phew! Tomorrow I have a VQ/Perfusion lung scan to test for clotting in my lungs. My current Pulm. is stepping me down from prednisone to get an accurate pulmonary function test. He tried me on Spiriva but it didn't help at all. So far nothings helped for breathing 5. Cardiologist/POTS doc- Yesterday I went in for tons of testing- I did a full 1 hour tilt table test, it was awful!!!!!! I never faint of get dizzy. I was fine during all of the tilt then they gave me Nitro Glycerin and it made me feel so dizzy and sick (( Did anyone else take this medicine during a tilt? Yuck, 1st it made my chest warm then my face then I felt so dizzy and nauseous. When they tilted me back down I had a big headache and felt so weak. Before the TTT they did a venous duplex of my legs that found nothing. He also did a BioZ test- that showed a decrease in cardiac output when I was standing, but I don't think they stood me long enough to see the full difference. He did an Echo that showed pericardio effusion. And I forced them to do an upright echo while I was slightly tilted, haven't heard the result yet... He is referring me to a Pulmonary Hypertension specialist... That's it for now

adding salt didn't help me at all, actually cutting back on salt has help a little...

My veins look fine but last time I was in the hospital the IV was painful and clotting and when they tried to move it they couldn't get a good vein. After several tries I was feeling like a pincushion ouch..They said a had weird vein valves. I get a lot of aching in my legs and feet, all I've noticed is I have tiny spider veins near my ankles.. I did a venous duplex doppler of my legs today and they came back fine...

anyone every use one of these, I want one! http://nmtinc.org/products_zoe.html

I've never been tested low yet. Last time I was in the ER: 1st day 160/120, 2nd day 148/110, 3rd day 128/90. I'm was on high dose prednisone and that cause a spike, I was just getting off it in the hospital.. I should invest in a wrist BP monitor though

"It's effects on increasing Na+ levels, and therefore blood volume, make it useful as an off label treatment for postural orthostatic tachycardia syndrome (POTS)" They list these side effects can cause hypertension and pressure in the brain. Read the side effects list: http://en.wikipedia.org/wiki/Fludrocortisone

Anna, sounds just like mine. I also get tons of relief by drinking half a gallon of water. People with connective tissue disorders (i.e EDS) also can get Pulmonary Hypertension..http://www.phassociation.org/page.aspx?pid=3145

B5 is found in most foods, has anyone tested deficient in it? Could be our bodies aren't absorbing it and vitamins supplements wouldn't help. Natural sources are usually the best way. Even if our bodies have enough maybe they aren't using it correctly, maybe something is blocking the natural use of it..?

Are they waste high, knee high or thigh high stockings and can you estimate how much relief they give you, like and extra 10 minutes to stand or something like that. My pooling is def getting worse every day and affects my breathing. Instead of getting dizzy from the pooling, I can't breath

I looked up the most selective Beta Blockers for example and they say they still constrict in the lungs 20-30%. I don't know about you but when you can't breathe any constricting of the lung is very very bad. Also the main medicine that Pulmonary Hypertension suffers are advised to avoid are, yup you guessed it Beta Blockers. Even though PH patients have tachycardia because of blockage in the pumping from the heart to the lung blood vessels. By the grace of God, many doctors when I was in the ER, every time wanted to try to slow down my pulse using Beta Blockers and each and every time for some reason I refused. Thank you God!!

That's great news! What a fighter! Thank you God and I hope she has a complete and speedy recovery!

What are your top 4 symptoms?

I want to for sure try it. I'm an aries and always compulsive, I think it's going to help curb that too

Rachel, anything help, like compression stockings? I have this same issue but haven't noticed the color change yet. I think its because I've very hypovolemic still lately..

Cfmartin78, Thanks, please update us as soon as you find out what tests he order, then maybe I'll make my local doc order them...

Could be related to renal hypertension (kidneys) symptoms one of which is frequent urination and water retention. Again I think the "tension" issues we have flare and are not constant like people with a normal chronic issue.

Here is a research article about Pulmonary Hypertension and you can see the similarities between Dysautonomia and PH especially in theories of mechanisms and causes http://circ.ahajournals.org/content/114/13/1417.full

Here is a study that says BB are contradictory in pulmonary hypertension, even though BB are given for systemic hypertension http://thorax.bmj.com/content/65/5/454.abstract

Nope, my friend tried it right after me. It's a normal analogue scale