goodnuff77

I'm male, 6' 3" and weigh about 200lbs with a slim build. The dr's told me tall and thin are mostly affected with pots. But they also told me pots would go away in 6 months. So I think that shows how little they know about this illness.

I've been dealing with stomach issue's since the starts of Pots I've been diagnosed with delayed stomach emptying, severe GERD, Barrett's esophagus, and now being told losing muscle function in my throat. I have a ongoing sore throat worsened by eating and drinking, bad stomach pain's and bloating. Due to a nissan fundoplication I lost the ability to vomit but still dry heave which worsens the pain. It's being suggested to me a stomach feeding tube. It would be a J- tube to bypass the stomach completly. I was wondering if anyone has one or has been recomended for this. If this helps I think it would be a good idea for me but still a little nevous about it. Anyone info or expriences would be appreciated. Thanks

I have a port for my saline use and been using saline for over a year. It require's supervision to a point. I've been told to much saline can cause problems with lungs, kidney's , and liver. I have blood test's preformed on a regular basis to check these along with vital signs and inspection of the sight checked weekly by a visiting home nurse. I would think doing Iv's yourself would be very dangerous. You need to use heprain daily with to cut down chance of blood clot in line and blood stream. I dont belive you can get heprain without script. Plus even though I have a port regular checks and a nurse I still just recovered from blood infection and clot in port. I would stay away from doing it on your own due to the risks!

I had dysautonmia diagnosis about 3 years before I was diagnosed with lyme. Had normal antibiotic treatment for the lyme and been told it's under control. I question it though because still feeling same symptoms. Also have asthma but lately more lung and chest pressure being blamed on stomach issue's(gastroperisis, Gerd, Throat issues). Haven't found any treatment very helpful so far.

I also have hypotension. My body didn't handle the meds well either. They put me on psuedophrine 4 times a day. I guess that has low side effects but only help slightly. So now I do saline daily with the psuedophrine. helps sometimes maybe you should explore this with your Dr and see if he thinks this route may be helpful. But I still have daily headache's that often go to migrains.

I have hypotension so when standing my bp raises slightly then starts to drop as heartrate climbs. Sorry just started getting into a little research. I'm frustrated with the lack of help from meds and treatments. But I'm having problems with all the medical terms.

May be a dumb question but what do you mean hyperandrenergic only?

In the early day's of my illness this was my 1st dianosis. Then they tried an ablation and evrything went bad for me after that. Now it's being said the worsening of my symptoms could be connected with the ablation. So becareful if Dr's suggest the ablation for the IST.

I can say I'm a man with POTS and my wife that struggles with my illness. She dosen't understand everything that goes along with this illness and get's very frustrated. Sometimes she treats me like I'm making it up. The statement's about men not dealing with illness well is insulting. POTS affects both men and women as do most illnesses. I think it's hard for anyone, male or female to deal with their mate being ill.

As I've written before found iv helpful on ER visits. So having so many reactions to the normal meds my Dr's decided to have a port placed for me. Been doing Iv's daily for a little over a year. It helps somewhat but it's not a cure and I still deal with daily symptoms.

Brye: I dont know that I am getting a pacemaker. I just know meds dont seem to be helping and if in talking to my Dr. and he thinks it may be helpful in better my condition I'll take it from there. I'm lucky to have a Dr that is willing to research treatments then decide if it may be right for me. I've had him from the start and he's been more helpful than most if not all of the specialist I've seen. But what I read shows me having a low and high heart range the Biotronik would be helpful, plus I like how the Dr can get weekly reports from it. Once again this depends on my Dr.

So had trouble understanding this one. So is it saying Someone like me with hypotension and low and high heart rate may not see improvment with pace maker?

My Dr wanted to stay away from the Picc because it's not good for long term and the infection risks. But the Port wasn't that painful. To change the needles my nurse uses emla cream(Lidocaine). So even the change in needles is painless. I found it does help me some. But I'm sure others will have great luck with a port for Saline. My biggest complaint is it takes 4 hours per liter. So even if I was feeling better I'm still in bed for4 to 8 hours at a time on average. But like any treatment theres advantages and disadvantages.

I was on both and had really bad side effect from them.

I had the burning and discormfort to.

So I'm going to talk to my Dr about a pacemaker. My heart rate sometimes goes in the 40's while resting then can go up to 180 and sometimes higher just from standing up. And my Blood pressure drops way down. So my question is Does the pacemaker help with any of the POTS symptoms or is it the same as being on a beta blocker where it helps sometimes. I wonder this because my blood pressure runs so low. Will have a leveled off heart rate fix bp or will I still have hypotension. And what about the headaches , stomach problems and the pooling of the blood. Will it help at all with anything. I'm confused

This link tells prety much everything : http://www.ncbi.nlm....les/PMC3069946/ Table 3 breaks down the symptoms

Thought I'd post this link for people that dont know what a port or picc line is. http://www.norcalvascular.com/expertise/pid:305/id:455/

I was on city water for most of my life but well water for the past 10 years.

I have had a port and done at home infusions for a little over a year now. I couldn't tolerate meds so this was like that last helpful thing that could be done. There is a little money to be made off the supply's Dressing kits, needle's, heprain, flushes, rate flow etc then a nurse every week to change the needle. Plus I was just in the hospital for sepsis and had my port removed week of Iv antibiotics 7 days of oral antibiotics. Then had new port put in. In my case the infection was due to a nurses error. Took her three time's to place the needle properly and didn't clean the area correctly in between atemps. I was then told to be using my port every day for over a year I should have had problems sooner. Also back to the cost I have a Dr's appoinmet every three weeks and also regular lab work to check for kidney and liver functions because of the amount of saline I use. So I would say all that cost alot more than a pill. The research I found they say with all the risks of having the port isn't worth it. Plus they think the usefullness is short lived. But I still have some benifets from it.

My doctor is weaning me off citalopram right now. I've been in 60 mg for a few years and it dosn't seem to be helpful with anything for me pots or depression. Plus their saying it can be damaging to the heart.

For my migrains they gave me immitrex. It works some times but it's really expensive and my insurance only lets me have 7 a month.

Alex I got excited with the lyme disease diagnosis thinking I didn't have pots. But I guess my Dr has been testing me all along (every few month's with my other blood work). I got my Pots diagnosis in 2008 and the lyme diagnosis this past summer and I guess the levels of something to do with Lyme indicated I only had it for about month or so. They sent me to a infectious disease dr. They said it's under control with the 25 day's 3 times a day meds I had to take. I was told even though it's treated I will still get affects from it as its always in your system and I'll aleays get positives for the results.Weird! But thats what they say. Oh I guess I shouldn't say I got exicted but thru researce I saw that sometimes lyme is easly treated if caught soon enough. I also have low vitamin d levels and am on 5000 iu a day as well. But the levels aren't going up and my doctor is talking about a hat mounted light to help in production of the d. Throught out the years I've been to so many Dr's and had the test and it apperars I have a strange case of pots according to Dr. Roy Freeman in Boston. I guess he's supposed to be a good pots dr. He even pressured me into a 5 day study because of my symptoms and thought it would be good for research.

I think it's pots I have the same problem. To put my kids to bed in their upstairs bedroom takes some time then alot of resting before I can read to them. My Dr gave me handicap plates because of this then of coarse the dizzyness and syncope.

I've had the joint and muscle pain for awhile told it's a POTS thing. But I also tested positive for lyme disease this past summer. So who knows the cause in my cause could be either or something else too.