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Everything posted by goodnuff77

  1. I saw Roy Freeman at Beth Isreal Boston Mass in 2009 through 2010. He was actually behind the scenes in my diagnosis and treatment. He had a team of Drs that I dealt with but he over saw everything. I'll start by saying his team was outstanding in the investigation of my illness. They performed every test imaginable in order to get a accurate diagnosis. After that it became less impressive.For me they were great for testing but I had a negative experience re treatment. I no longer see them but my other doctors still talk to them before I start any new treatments. My opinion is that Beth Isreal is a teaching hospital so they are great for testing. I would highly recommend seeing him for testing for a official diagnosis. But have back up for treatment
  2. I've had 4 port a caths and many picc lines. I received 3 liters of normal saline daily. Due to sepsis on many occasions and long term hospital stays my Drs came up with a alternative. I can't tolerate many meds or even salt tabs without side effects but we needed something safer. I now get my 3 liters of saline through a g tube. ( stomach feeding tube). With a slow drip I can get my fluids without any side effects. The chance of is very low but very easy to treat if it does get infected. Usually just antibiotics and some ointment. Now it doesn't work as well as iv treatment but still works well with less risk. I a small pump that also had battery power and fits right in a backpack with a bag of saline. So your not stuck leashed to a iv pole for long periods of time. Even though it's a feeding tube I'm still able to eat and drink normally. Not sure if something like this is a interest to anyone. For me it was a great safer alternative. Also it's needs to less sterile so I mix my fluid as needed just using tap water and salt.
  3. I hope my post doesn't sound like I was rambling or sound desperate. Wasn't sure what to include or how exactly to say what I was looking for.
  4. So I've reached a point in my POTS based life where I think I could really benefit from reaching out to people that know exactly what I'm dealing with. For this I'll give a little background. I am a 37 year old married male from Maine USA. I have 2 children (ages 7 and 10). I first started becoming symptomatic in 2008 while working and running a small construction company. My illness came on out of nowhere's and became progressing quickly. In short time I had to close down my business and seemed my new job was traveling to multiple states for testing, treatment and diagnosis. I was quickly declared disabled and was unable to work due to overwhelming symptoms including syncope. By 2011 I was awarded SSDI benefits. I found dinets forum and began following and participating in the forums. Now I'm back feeling I need support. I was just hospitalized again due to complications with my POTS again and released yesterday. After another frustrating stay dealing with medical professionals that have no experience with my illness. So I left the hospital feeling the need to talk to people that understand what I'm going through. My family is great support for me and so is my new dr. But my illness destroyed my relationship with 99% of my friends. I'm not looking for a shoulder to cry on but people I can talk freely to that understand. So now a little about my condition. Once again I want to stress I'm male. I understand that most of us dealing with POTS are female and feel more comfortable talking to other females about this. Me personally don't mind talking to either sex. So Im not good with medical terms so my description of my symptoms will be in simple terms. Also I'm not trying to compete or exaggerate. I just want to list my condition to find people dealing with some of the same things. So I have a POTs diagnosis with low blood volume and low blood pressure. Suffer from migraines, digestive, problems, nerve pain in all my limbs. Due to the syncope have had many damaging falls (one being down stairs). Due to the falls I've had many concussions and been labeled with traumatic brain injury. So lots of problems that go along with that. Last week my dr put me in a wheelchair. I'm overly sensitive to meds so wasn't able to tolerate the normal prescribed meds to help. So I hade a total of 4 ports so I could do saline therapy.i received 3 liters daily. Due to multiple bouts of sepsis we had to do away with the port and now I use a g tube. For some reason I cant tolerate salt tabs but a can handle a slow drip of salt water through my tube.(still 3 liters broken up to 12 hours per day). Well that's probably a list of my major problems. The reason I'm try to reach out to you guys on the forum is my children are getting older and I'm able to do less with them and their still young enough they don't understand why. My wife is very supportive but it's hard for her watching me get worse as time goes by so she gets frustrated talking about my problems. Basically with the new wheelchair and recent hospital stay I'm having a really hard time. Its just so hard with all this going on and not having anyone that truly understands to talk to. Like I said before I'm not looking for a shoulder to cry on just people that can relate to talk to.
  5. I was put in a wheelchair for about a year and tended to use it more than I should of. I found the use of a rolling walker with a seat worked much better for me. I was still mobile and had the walker with a seat for when symptoms kicked in. I know some of us need a wheelchair to get out of the house so I'm not saying anything negative about it. But would definetly recommend trying a walker. Mine has a seat and hand breaks and I feel it's a great tool to stay walking.
  6. So a little confused. My doctors in the past put me on a exercise routine to retrain my heart as they call it. I was supposed to bring my heart rate to 130 for 10 minutes of exercise everyday. Well that didn't go well for me and they labeled me exercise intolerant. Now I have a new Doctor and he wants me to try again but this time bring my heart rate to 130 for 30 minutes twice a week. Nervous about this but going to give it a try. My question though. If my heart rate goes 130 and higher just from standing and just keeps going up while upright. How does doing the exercise differ? Just not sure if I can do it without increasing symptoms causing me to be in bed ill. Isn't the elevated heart rate all the same? I should mention I was in great physical health when I got sick and of coarse not so much anymore. Just don't want to do anything that's going to make dealing with this illness worse.
  7. All they said is that experiencing symptoms isn't common. They didn't really have any answers. But my specialist wasn't the greatest. For the most part all he wanted to do was push meds on me and not give to many answers. My cardiologist took me off my beta blocker about 1 1/2 years ago and told me they affected my bp to much. I got frustrated with one pill lowering my bp to help heart and one that affects heart rate to help bp and so on. Plus just had to many side effects to meds. So switched Dr's and now off all meds except saline by Iv daily.
  8. I have this problem also. They took me of my beta blocker because it dropped my bp too much. I experience POTS symptoms in the sitting position at times and have had syncope episode's while sitting. My bp tends to drop in sitting position mostly in the hot and humid days.
  9. My Dr tells me any time my heartrate goes above 130 I should go to the er. After about 12 visits and nothing being done I choose not to go any more. For me I get tachy laying sitting and standing. On average when standing my heartrate is 165 - 180 sometimes higher. When laying and tachy it's around 125. I've been acused of drug use at the er and they just dont know what to do for me. So now I pretty much just stay home unless the chest pain gets real bad. If I do go they just give me something for pain, anxiety, and iv and send me home. I do iv's at home so the hospital is last option for me.
  10. Potsgirl have they done a upper endosopy to check for hinatal hernia? I was having problems keeping food down for awhile and couldn't sleep do to discomfort. Then I began vomiting blood on a regular basis. During the endosopy they found I had barrets esphagus, gerd, and hinatal hernia, also delayed stomach emptying. They ended up doing a nissan fundleplacation on me. I still have stomach issues that they are working on but no longer vomit. Dont know if they have looked into this.
  11. Potsgirl I had the powerport placed in January It was my second port. The first one I had was really small and I had some pain after the surgey but went away after the first month. With the powerport I still continue to have pain. But as of now it's pretty much gone. I've talked to the surgeon that put the power port in and he told me that the powerport is pretty large in comparison to most of the other ports used, and he said the long term pain was normal due to the size of it on the body trying to heal and get used to it. I use my port 3 times a day and now the port pain is pretty much gone. For me having the needle always in is what makes mine more sensitive. When certain things touch it (like seatbelt strap) it gets irritated. So I was told the pain is normal and I would ignore everyone sharing their friends dying stories. Seems weird to me that people are saying that to you. You have a object in your chest that your body needs to get used to. I think people need to stop sharing Death stories as if being sick wasn't bad enough people feel the need to scare you? The Dr's and nurses are trained what to look for with the port and infections. I hope your pain gets better.
  12. fc3schick87 I do 3 liter's of saline through my port daily plus drink alot during the day. But my urine is hardly ever clear. So I spend 12 hours a day hooked up to an Iv so I would say I'm pretty well rested. I would think my urine would be clear but it's not.
  13. I haven't had that done. I'm seeing my Dr on Wednesday. I'm sure he'll want to do some test because the spike is something new for me and I'm not sure why my headache is still there. Day number 3. I get headaches alot but not for days at a time.
  14. I was wondering about bp spikes. Normally I have low bp around 90/60. On thursday when my visiting nurse came I was dealing with bad headache dizzy spells, etc.. When she took my bp it was 162/115 and my heart rate was 105 laying down. She said she was calling my Dr. The Dr's office called later and wanted me to go to er. I refused because about a hour after she left my bp went back down. They told me there's a chance I suffered a minor stroke and check my bp every hour or so. If it spikes again call 911. Well my bp has stayed low since then but I still have a headache, and my pulse is going higher than normal. Going to 160 quickly when standing. I dont think I had a stroke but they made worried about it. does anyone else thats hypotensive have high spikes at time's. I'm not on any new meds, under anymore stress, doing any new activity's. Just wondering
  15. Northerndarlene It cost me money for most of my reports. I dont know if it was the lawyer or the Dr's office charging. When my case was over I had to pay around $400 for all the reports I got.
  16. Naomi.... The judge said POTS wasn't in the list of illiness or diseases. None of their experts knew enough about it. So they went on my Dr's opinion's for their experts. I spent about 15 minutes with the judge. I did get SSDI after 2 denial's and meeting with the judge (2 1/2 years). I'm not sure if it's different from state to state.
  17. I learned with social security the more you can send them the better. My lawyer sent them over 300 pages of test results and Dr notes. He said it's better to flood them with information than to leave question marks for them. For my case though the most important paper work was the documents from the Dr's explaining the condition. The judge told me I didn't fit in a social security catagory illness. So it's important they know as much about your condition and limitations as possible.
  18. With my port I was told the only time to really get nervous is when you have sign's of infection or when your port stops working. I was at the er was about 2 months ago. I only had a fever at night time. Also I use my port daily at home, I wasn't able to get fluids into the port or blood return. I found out I had a blood infection and a clot in my port. I'm now told that is the problem with using a port full time. So just watch for the sign's of infection.
  19. Everything thing for SSDI is based on work history and how much you made in those years. I'm 34 but been working since I was 13. I have 2 kids and married. I was told I'm getting the max payment for the state I live in. It's well over $900. If you dont have enough credits for SSDI I belive you go to SSI. I know in maine the max SSI is $700 and no insurance.
  20. Goldice I was looking up the biotronic this mourning. Not alot of info but my Dr is familer with them and likes the fact of the weekly print outs to his office. I did see about the high and low range settings. Also the positive study Dr. Grubb did on them. Still have alot of questions to prepare for for wednesday I just wish I could find more anwsers before then so the Dr wont try to push me in any certain direction that may not be right for me.
  21. Ramakentesh It's acutally my primary dr that wont let me try the licorice because of the side effects. But it's him the cardio and someone from the clevland clinic that he's been talking that are recomending the pacemaker. They want to try to bring the heart rate under control. I dont know about the pots or NMH/NCS. I dont know all the med terms and dont understand most of what the Dr's say to me. All I know is when all the symptoms started the did a cath ablation and the tach has been out of control since then. As I'm feeling more helpless with the Dr's I'm trying to do more of the research on my own. I can honestly say I have no idea what 99% of your posts are about. Just trying too gather as much as I can, And hopefully something gets figured out.
  22. I am hoping that some people here with pacemakers could give me info. I cant seem to find any answers to my questions online. Lemonsin's I had to edit this.....I'm not sure if I'm being sensitive, stressed or just tired ( very anxious about all this) but I know surgery isn't a MAGICAL PROCEDURE. Look up and you'll see I'm asking qeustions about some of my concerns with people that have pacemakers. Like I said before Dr's dont always give you all the needed info about procedure's. I just know I'm at a loss. meds aren't working and what little lifestyle I have is suffering. Need to try something.
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