goodnuff77

It started for me in 2008, One day I was working the next I was a mess. It seems like new symptoms keep popping up daily. Then some of the healthproblems I thought were fixed or under controll are all comming back full steam. Hasn't let up at all since my first symptoms started

Good luck getting the job. I'm sure it would feel good to get back to the world and see what you've been missing. Hope the 8 hour shift isn't too much for you.

Goldice my dr and I where talking about the biotronic. I just dont understand how the exercise feature works. Do you still have to take beta blockers or anything with it or does it controll the heart rate completely?

Bella and Brye like I said the pacemaker was talked about in the begining but we decided to go with the med route. I've become very sensitive to the meds and the one's I'm on now aren't working. I'm torn because life is becoming very tough to keep going like this and even harder as my kids get older. I get short of breath very easy with severe chest pai with my tachycardia along with syncope. But on the othe side theres days I cant function due to the hypotension. Since 2008 I have over 300 pages worth of dr notes and test results stating my condition is getting worse. (That was a big help for SSDI) I think I'm just feeling hopeless and ready to try anything that might give any kind of relief. But as I found with my Port A Cath surgery Dr's dont always tell you all the facts. They told me the port was good for 5000 needle insertions. But I found out the hard way when it's in use 24/7 I was lucky to make it a year before it needed to be replaced. So I'm just looking for people like you guy's that have more realistic experienses than the dr's seem to have.

Brye :I forgot to mention my biggest question and that was the syncope. I dont know if it's from the hypotension or the heart rate. The other thing that confuses me is they set a high and low for the rate and some have the exersise setting. Does your heart rate go high or is it always brady and do you faint? Wondering if the pace make can tell the difference between exercise and pots.

My Dr decided that it's time to think about a pacemaker and he sent in the referal to the cardio. The cardio wanted to put one in 3 years ago. So I have until wednesday to come up with questions. I was wondering if those of you that have pace makers does it help with any of the other pots related symptoms or just level off the heart rate. I ask because I have hypotension and pooling in hands and feet. Stomach problems, migrains, daily head aches. Brain fog etc... I've been told I cant take antiarythmia drugs because of the neuro side and it can cause heart failure. So does the pacemaker function right with the neuro side of things? Confused and having trouble waiting till wednesday to find out anything.

Katybug my wife and I both do counsling. But Now we are looking into something for my kids. Maybe a counsler can explain my health issues to them better than I can and take away some of their fears. My counsler does specialize in cronic illness. But even she is confused by the complexity of pots. I think my wifes biggest problem is because I owned my own construction company and she was a stay at home mom. Now there's financial strain plus all of my limitations. I'm not the same person she married.

This may be a silly question but are people with low B/P more app to have syncope than high B/P? I have low b/p and have syncope spells alot. I could be wrong but it seems high B/P people dont pass out as much. Just asking for own knowledge.

I try to be as positive as I can. But I'm sure many of us on the forum realize it's not always easy.

I sometimes get warning' and sometimes not. My first episode was while sitting in a car, began sweating, disorinted and chest pain

With the psudoephrine like I said it feels like I'm only on it because my body could tollerate without bad side effects. I'm always tacky so I dont know. But my blood presure is ramining low while on it. Seems like my tacky is getting worse and I've been on the psudoephrine for about 2 years. Ohh and going back to compression socks. I cant wear them. They make my feet even colder to the point of being painful.

Issie The port does help alot but only in the morning. Due to being hooked up to it for 8 hous at a time I try to save my day time and do it at night. to see my faimly. But it tends to wear off quickly after I start using urinating ( which is alot) Ramma I tried Florinef but had lots of side effects and was taking off of it. I had My Dr appointment yesturday and talked to him about licorice root but he said it would affect my b/p to much. I take the saline for blood volume and to help b/p mixed with psudeophrine to raise b/p. Seem s to be the only things so far my body could handle. Midodrine was horriable on my body.

I am a fainter and have had so many head injury's I'm labled with Tramitic brain injury. I tend to fall hard. I've woken up in a pool of blood on the floor several times. Fallen down stairs and have scars and my fore head and back of head. The rest of me looks like I'm a skateboarder or something. Scars on arms and legs. I have on my hospital records no more exrays unless absoulotely neccessery. I've also bumped my temple and it sweeled out like a base ball and turned in to a large pecentage of my face bruising like I was in a bar fight.

So been dealing with pots for about 3/12 years with increasing symptoms. Been to nuerolists, Cardiologist, Autoamunine specialist, gastro, ent. and luckly a faimly Doctor who has stuck by my side trying to do everything he can(though he's limited only being faimly practice). I'm now to a point where none of the meds are helping and the Dr's are unsure what to try next. I haven't been able to tollerate most meds and it seem's the meds I'm on now are the ones that dont give me side effects.( even though I get no relife from them) I have a wife of 13 years and two kids ages 4 and 7. My 7 year old is caliing me lazy because I'm unable to do certain activity's with her and my son told me yesturday That I'm going to die before he gets big because I'm at the Dr's to much. My wife is talking about leaving me because she cant handle the up's and downs of the illness. Also from my health I get frustrated so she say's she cant handle my moods. So my Dr put my on low dose anxiety meds to try to help. My wife says it mellows me out to much and makes me zombie like. So now she wants me to stop taking them. So I'm 34 cant drive or work due to the condition of my pots. Stuck in the house daily by myself mostly in bed. I cant exercise do to the OI and syncope and severe pooling in legs. My hands also swell and turn purple and give me limited mobility in them There's days I cant unscrew the tooth paste cap. Have trouble doing hobbies due to the shakes hand problems and effects from certain positions. I have syncope while sitting and laying down. Just at a complete loss. And so tired of hearing certain aillments cant be helped because it's pots related. It makes me really nervous with warm weather comming( symptoms worsen for me) I'm sure there are others in the same boat as me. Just curious if anyone has any idea's that would be helpful.

Lemons it seems the only thing the beta blocker is doing for me is dropping my already low b/p. I wanted him to try a diffrent med that might help with the tach but not the b/p. The blocker isn't doing anything for my heart rate. My question to him was why am I on med that isn't help the heart rate and working against the meds I'm taking for my b/p. It dosen't make sense to me. I would like to get my b/p up to at least normal range once in awhile. Maybe I wont be so tired and cold and shakey all the time.

Rubytuesday If I had the Iv done at the hospital it would be covered, But They just upped me to 2 bags aday. So the problem is I dont drive and to get to the hospital everyday for 8 hours ( 250 ml's an hour) would be a little much. I have a wife and 2 kids and want to see them. I dont know what to do... Seems like everything lately is going wrong

Well went to the Doctors to go over results of moniter. The results wern't in so after not being able to make him understand the propanolol wasn't working he had me put on a finger pulse oximeter and walk around for a litttle bit. I made it walking for about 30 seconds before he made me lay down and sent me to er by ambulance. 5 bags of saline later I was able to go home. Now they want to add 30mg more propranolol later in the day. How do I make the Dr understand this is already dropping my b/p and I'm not willing to take more. It seems after 3 1/2 years with this Dr and know he's afraid to change meds. So frustrated!! Why is it easier to get pain meds if I wanted them, than it is to get something to help my heart rate. Makes no sense!

I didn't know I had this test done but was told that some point in my life I had mono. So I think they know that from this test. Maybe?

I was wondering if anyone else found their beta blocker to stop working. I went through a list of beta blockers over the past 3 years or so finally finding Propranolol to be the only one to help lower heart rate. Over the past six months or so my heart rate has been jumping up. Now my blood pressure is even lower than normal and the heart rate is all the place. I'm on 120mg a day and have been for awhile. I take it in the am but have no help from it at all. Like I said my b/p is lower and my resting heart rate is running over 100 now in am and pm. But the weird thing is some points in the day my heart rate will go in the 40's then later go back up to the 100's while laying down. I've been complaining to my doctor who finally is listening to me and ordered a holter this past monday. I guess he dosen't belive me and wants tests. Anyone else find a beta blocker to just stop working?

Sorry I'm just venting. So my insurance paid for the surgery to have a Port a Cath put in, they pay for a visiting home nurse to change the needles in the port. But today I got a letter after a year saying they wont cover the supply cost to use the port anymore. So I got a bill for $1,221.48 and their saying I have to pay $103.68 a week for the needed supplies. How are they able to do this all of a sudden, and why pay for everything else?

Potsgirl I would recomend you asking them about Emla cream. It's a lidocaine/prilocaine cream. It's used to numb the area before they access the port. Getting acessed isn't the most comfortable thing and the cream helps alot.

I think it's been 6 weeks since I had my port replaced. Still sensitive at times but mostly healed. I dont think surgens are very gentle when it comes to making the pocket for the port or running the tube up your chest. Hope it starts feeling better for you.

Thanks nowwhat. Find out more on wenesday I'm being positive in that it will help.

nowwhat: I agree with you about the questions before having the tube put in. As far as how long the tube will be in. Not sure it depends on my body. This is pretty much a procedure to try to give me a better daily outcome. The problems have been ongoing. The Dr's have tried all the meds they think would work. I've switched my diet many times and nothing has been helpful. I didn't take notes at last appointment but this is pretty much what I was told. My delayed stomache emptying is causing stomach pain and bloating also putting pressure on lungs giving me chest pressure and breathing issues. Even though I had the nissan it appears that acid is still making it's way to the esophagus. Then the muscles in my throat arn't working in the churning of the food to the stomach. I deal with pneumonia on a regular basis. Something was said about aspiration causing the pneumonia. The Dr is concerned with increasing problems like not being able to swallow more breathing problems. So the j tube is being looked at to bypass my whole system pretty much to try to allow healing. Then hopfully Things will heal. But there unsure if it will be short or long term.

Thank you katie