goodnuff77

Sometimes sitting affects me as much as standing. It's a daily problem for me. The only time I get relief is right after doing IV if I dont get out of bed.

I have GERD and hinatal hernia, ulcers, slowed emptying. Had a Nissan fundleplication about 6 months ago. The surgery helped for a little bit. Now I'm back to pain and bloating. Stomach problems are now affecting lungs from the slowed emptying and bloating and now affecting throat. Dr say's i have athropy of throat with GERD causing acid to go back up into throat. Have constant sore throat worsened by eating, Stomach pain and chest pressure. Might be having 2nd surgery after I have my 6th endoscopy in 2 years.

My nose hasn't stopped running in years. Dr's tell me it's just allergy's. Is running nose something to do with symptoms of POTS?

My symptoms started in 2008, been getting worse since then. Seem to have hit a road block with meds that help and keep getting new symptoms with time. Doctors seem to be out of answers. With new symptoms keep getting same answers of it's POTS related and nothing we can do. That reply is getting old and because Dr reports say symptoms are under control my insurance wont allow me to see any new Specialist. But I've had multiple surgery's and treatments to try to help and there not. But they keep paying for that. Frustrated with illness, Dr's and Insurance company's. Keep thinking the new symptoms will stop eventually. Right?

When I went thru this luckly I had multiple Dr's working towards it. But my lawyer said plain and simple can you work 8 hours a day 5 days a week without any extra breaks or treatment required. Also it goes off of what line of work you have done for the past 10 years not a new job. So this includes missing work day's needing extra breaks, being allowed to consume fluids throughout the day without leaving your work station. Also my Dr's took away my right to drive. So the same as you how would you get there. Any report of your symptoms and Dr's findings work in your favor. I would talk to a lawyer or even request copy's of your med history from Dr's to see what they include This will cost 10 to 15 dollars per Dr. But if your primary care moniters all of your other visit's they would have copies. Those reports should help you see what this Dr feels about your health because of his notes.

I had multiple Dr's recomend me for Disability and filed at the ss office. But you can do it online. I would suggest getting a lawyer right in the beginning as I got denined twice and then had to go to court for final decision before I got approved this took 2 1/2 years. Also I wouldnt wait to long if your going to apply because it works off of earning and credits. The longer you go the less credits and then your better off with SSI. I was told if I got a lawyer sooner I probably wouldn't of had to wait so long. The lawyers no where and what to get for information and only get paid if you win. But then you have to pay office expenses and Dr report fee's. my fee's were $480 then percentage of back pay which the court mandates.

Corina I have not tried ivabradine but after looking it up I dont think my Dr's would try it where it only lowers heart rate. Espically where my heart rate gets so low. It seems that something like Norpace works to level off the rate with both high and low just didn't know if anyone has tried it. I'm trying to get as much information to talk to my Dr about and it seems my symptoms keep getting worse as time goes by. Redoctober my Dr's were trying to level me off on meds to help with the syncope before they would let me exercise. I've had syncope in both sitting and standing position so they were being careful with my activity's up to that point. The only thing they wanted me to do for exercise was swimming but then I got my Port a Cath last year and because its always accessed they tell me I cant swim due to bacteria and possible infection. But when I was working a few years back wearing a holter moniter my heart rate got up to 160's to 180's and stayed there for normal activity. Then due to presyncope I had to sit. As far as low heart rate it happens all thru out the day. Often when sitting and my bp is low so is my heart rate is very low making it hard to function. Just getting really frustrated with increased symptoms and it seems the Dr's are running out of things to try. Or for that matter what there willing to try because they feel they got me leveled off with current meds. For months I've been explaining new or increased symptoms but I'm told that the syncope is pretty much under control so they dont want to make any adjustments. But the syncope is only slightly under control because of fear to get up and do anything.

I did I couldn't tolerate the florinef or pretty much anything in that catagory. I've been on so many meds and had problems the pseudophedrine was the only one that my body could handle.

I've been reading posts here for awhile and I see what people are doing to try to help their symptoms. Most of the treatment drugs everyone seems to be on I've tried and had to many side effects from. I suffer from low blood pressure and a heart rate that is all over the place. It seems like the meds I've been on (propranolol for heart rate, pseudoephedrine for blood pressure, saline for blood volume and pressure, then a bunch more for stomach, migrains etc....)are almost working agaist each other. My blood pressure always runs low around 104/73 for average when sitting. But my heart rate is all over the place. Today I decided to record it from sitting to standing every minute till I couldn't take it it started at 61 sitting then to standing 116. 1 minute later 145, after that 158. I stopped there due to dizziness. and of coarse my blood pressure drops down so I didn't want to hit the floor. So back to my question my heart rate ranges from 40 to 130 in sitting or lying position. I saw the post about the pace maker and my mind started going. Doctors have talked to me before about having a pace maker but didn't want to because of my age (34 now) and the constant replacements. Which is good because I dont want a pace maker. But I was curious about the pace maker drugs like Norpace. I was wondering if anyone was on these and do they help or if there is danger in taking them. I just want to be able to do more with family and friends and maybe get out of the house. So if anyone has any ideas I would love to hear them. Thanks Added explanation of meds working agaist each other: Pseudoephrine raises bp but also heart rate....Propranolol lowers heart rate but also bp. So is there any point to still take them if there working against each other and not helping? I was just in the hospital for 6 days and they gave me 3 bags of saline a day but all the nurses where concered about my low blood pressure. Need to find out what lowers heart rate without affecting my bp.

I went to recovery just to get my things and quickly meet with the surgeon. Then they sent me home the whole thing takes about a 1 1/2 hours. Pre op is the longest part. I guess the stay in post op would depend on what type of anthesia. I was awake and alert as I came out of Operating room.

Throughout my time dealing with POTS Had many stomach problems. Dealing with GERD, vomiting stomach pain and lots more. But for the past few months I've been dealing with some new problems with my throat. I've had a ongoing sore throat and ear pain. These pains are worse when I eat and drink. Now my doctor is telling me it's athropy of the throat due to the POTS. He recomended a soft food diet and my normal dose of Omeprazole. Then said it's probably something else I'll have to deal with and it will probably get worse. I'm nervous because the last time I was on a soft food diet for my nissan fundoplication surgery about 6 months ago. I lost 20lbs in 3 weeks and had more poor health from the POTS with the weight loss. So my question is does anyone else have the throat problem and is there anyway to eat or drink without pain or weight loss. I tried all the shakes and other drinks, but the liquid is hard on my throat at this time and I still lost weight last time I tried them.

I had a port placed last year then had it removed last week due to infection then had another one placed on last week. They put me out for all 3 procedures but was able to leave right after the surgery. For me chest was sore and hurt to move arm for about 4 days. But it wasn't alot of pain I only used advil for pain and it worked pretty well. So I have a scar on both sides of my chest about 2 inches long and a small 1/4 inch one's by my neck. I had my newest port placed last friday and had the port needle inserted about a hour later. It's a pretty easy surgrey to go through in my mind. any questions just ask. and good luck. *Also if you can watch stuff like that you can see the whole surgery on youtube.

I do Iv's daily between 1000ml and 2000ml per day 7 days a week. So I see my doctor alot for blood work.

Kayjay I have a very big problem with sweating during the night. I dont take anything to help me sleep so when I do fall asleep I'm usually waking up all night very cold but drenched in sweat. My Doctor tells me this is due to drop in blood pressure. I have grown to accept this as another symptom that I cant get any help with. Also on average my blood pressure runs low usally around 90 over 60 with a heart rate of 110.

I to have the clogged ear problems. It some times feel like my ears are popping, or liquid in them, often pain. My hearing is affected at times and I get very disorinted. I find when my blood pressure is low it's worse. I've been sent to a ear nose and throught Doctor and been told there's nothing wrong. My primary doctor says it could be POTS related but unsure. Goes back to Doctors not knowing so it seems they tell me it's all in my head.

I did only to be given a email of someone in Vermont after a year. I dont think the meet others is used to much.

Does anyone know the best way to find and meet people in your area. I tried finding members using filters but it seems that people are active for a short time then leave. Just looking for people close to my state to maybe share experiences or find new Doctors etc.. Please let me know if anyone has any suggestions.

Through my many trips to the hospital and being hooked up to a iv. I saw the iv gave some help with symptoms. So I started talking to some of my Doctors about a PIC line. I had 2 Doctors agree that this could be helpful. But my primary care wanted to use the port a cath because of the lower chance of infection plus less trips to the hospital.(Doctors wont let me drive) The port is good for 5000 needle changes but the pic needs to be changed I think monthly with use of ultrasound for placement. So my advise is to keep on your doctor about how helpful the Iv is for you and pretty much pressure them into it. I've been using my Port for daily Saline use for a year now and I just want to tell you that even though it's been helpful with the syncope it doesn't really help with all symptoms of POTS. Also a negative to the bags is I do mine at 250ml drip which is the max for my age. So it takes 4 hours per bag. So it seems to feel a little better I spend more time in bed.

I owned and operated my own construction business up until I became ill. Due to the area I live I drove a average of 100 miles per day. I was a very active member of my crew and it became difficult to keep up with the demand of my job and crew between the symptoms and all the testing. About 5 months in I lost my ability to drive do to the syncope episodes. Then due to the nature of my job (plasterer) I was instructed by every Doctor that I saw that I could no longer continue with the work. So I had to fire my employee's and close up shop. That was a little more than 3 years ago and with the increasing symptoms and poor health the Doctors dont think I have a chance at returning to work or driving. I have been on Social security disability since june of 2011.

I applied on my own and got denied twice then I hired a lawyer. I met with the judge and was approved a year later. I would advise you to get a lawyer. The judge told me the process had to go they way it did because of my age (i'm 34 now was approved in June) and POTS isn't on the list of approved disability's used by social security. The lawyer is free until you win then they can only get a portion up to $6000 from your back pay The amount is decided by the court. Then I had to pay $480 out of pocket for office fee's. The lawyer explained everything to me and I think work hard to educate the judge about POTS. I would not want to try that by myself. Good luck to you and if you want to know anything about my Social Security experience feel free to ask.

No spinal tap or anything to do with my spine just a handful of surgery's on stomach and Cath Ablation. My Doctor did send me to a spine Dr. where I got the normal exam and some xrays and a mri. But the spine Dr. told me he had no clue about POTS and never heard of it. He agreed that it's probably related to the POTS. I've had to travel to 3 different states to meet with Doctors just to get to this point. And so far the only thing I found is that nobody really knows about POTS except people that actually have it.

I started getting my POTS symptoms back in 2009, since then it seems that new symptoms keep popping up. My Doctor blames everything on the POTS and says there's really nothing we can do. I've been on all the traditional meds for pots only to find my body couldn't take them. Had all the tests, moniters, a handful of operations and procedures. Now I pretty much just take Propranolol and take Saline via my Port a Cath. Then of course many other meds for some of the other problems. So I've been dealing with the problems the best I can. But back in July I started waking up at night with uncontrollable chills, severe spine pain from the base of my skull to just below my shoulder blades and I have a wicked brain fog. The fog, chills and pain are so bad I cant move out of a fetal position. This happens about 4 or 5 times a month and last about a hour. My Doctor says this is probably due to my blood pressure dropping and tells me it's because of the pots and nothing we can do. I'm curious if this happens to anyone else and if so does anything work.

I was unable to tolerate most of the meds that most people see some help from. My Doctor and I both noticed from my many hospital visits that 1-2000 MLs of normal saline helped with some symptoms. So last December I had a Port a Cath placed in my chest. The only outside help I need is a needle change every 7 days. Other than that I hook up to my iv and administer it daily at my home. There are companies that ship all of my supplies right to my house. I also had severe GERD. That was helped with a Nissen Fundeplication about 6 months ago and for migraines I use immitrex and advil. Helps a little.