RichGotsPots

I will probably end up seeing Dr Tullo, because he is literally the only specialist in the state.. But someone on here wrote me a PM saying "I did see Dr. Tullo, I was diagnosed at the Mayo clinic and he didn't seem to be the most up on things for POTS...." so not too confident about him yet. Unfortunately all the specialist in NYC don't take my insurance, I'd really like to see a POTS neuro..

Rama, you make a great point "what were those negatives?" This poll was great and informative, wish we could take it a few steps further. For example, polling all the individual beta blockers that were taken and what the immediate vs. long-term affects were. Of course I could look up each on and their use and side effects but I think seeing it here would be more useful for me. I feel like POTS people may be more sensitive then the general population to certain meds (Parasympatholytic" and sympathomimetic agents, that affect the ANS) and I'd also like to hear about a side effect that a POTS sensitive person has then a regular person had.... 1 step further and I hope for a day when we can all get definitive sub DXs of POTS and get a list for our particular sub-class... For me personally it's nerve-raking knowing that the top 3 treatments that helped were also among the least tolerable. For example goldicedance ended up in the hospital for 10 days after Florinef is pretty worrisome. I've heard similar stories from people on here with other meds. I took a Poll on here about what doctors help the most with treatment and it's clear people are seeing many different types of doctors not just dysautonomia specialist. Are all these doctors really poring through the POTS studies to come up with the best treatments or are they just piecing together treatments based on symptoms? So many questions I have are unanswered and I think your poll highlights that..

Did u try for breathing issues or just pots issues?

why are you tapering?

I know what you are talking about. I have a salt room in NJ near me. They say it helps with breathing just like salt mines our the salty ocean air. It's really interesting they cover the walls with salt and dump it on the floor like sand, then they use a special machine to funnel it into the air and cycle clean air into the room. On the website there were some great testimonials. Please let me know how you like it. Do you have breathing issues? I recently ordered Saline nebulizer to try to breath, but all the article I read said it causes some broncoconstriction and the best thing is to take albuterol first so that's why I'm not sure I'll try it..

Stewart wont take me, he is a pediatric cardio only and his studies only go up to 29, I'm almost 34... Only doc there is in NJ is Dr Tullo but he specializes in Fainting his website is www.njfaint.com and I don't faint. I once saw a Dr. Riley in Princeton, NJ but he only comes 1-2x a month otherwise he is in Philly. Dr. Riley basically wanted to do a 30 day holter and I didn't see the point. I thought he was good just not really doing any special testing or treatment that could help me. I'm looking for some lab-type of testing and someone that could point to some autonomic problem causing my breathing issues. Fatigue doctors seem like a good option but the only list I found so far has really holistic doctors treating fatigue...

If I left any out then please add below and if it's a specialist please put a link to a list. I'm looking for a list of Chronic Fatigue Specialist in NJ Thanks, Rich

thank you! I feel extra potsie for sure and just weak and tired

i think there are a lot of people with pots who are sensitive to meds and eveything else lol That's half the fun/torture of figuring out what works for us. Anything you know doesn't work, cross off the list and make sure to look at for links to other meds that might cause similar reactions. Honestly TILT tables help docs evaluate us but it's not the only thing. I know I'm not doing another one if they give me a med to try to cause a reaction. What's the point?? If tradition meds don't work a lot of people try alternative meds or docs who prescribe off label meds.. Don't give up or get down, we are all here for support because we all need it.

Had nasal polyps removed in 2009 under general. Woke up with high tachy, that's about it...

Thank you everyone, you're prayers helped enormously!!!

Done with Tamiflu, on my 2nd zpack 7th day, doing much better!! phewww. Thanks to everyone for their prayers!!!

getting better

My children have all been on Tamiflu. They did fine on it. My oldest son got H1N1 and nearly died (he was out of town with his dad in the beginning, so it was too late to start Tamiflu when he got back), so when the next kid got that type of flu the doctor put him on it quickly and it was amazing. My youngest son was just on it again a couple of weeks ago and it cut his symptoms from a week to a day and a half and the coughing and the bronchitis didn't happen. (That's the bug that is going around here, high fever, headache, back pain, coughing, bronchitis) I have heard that Tamiflu only works if you catch it in the first 24 hours of a virus... It sounds like you've had this longer than that. If that's the case it may not do much for you. Hope you feel better All the info I read on Tamiflu is that is supposed to be taken the right away 24-48 hours. I took it at 80 hours.. From what i read it only helps with Flu A or B and not with avian or other types of viruses (SARS, etc...) The good this is I didn't have a bad reaction..

Amazingly I kept myself out of the hospital, I almost caved in about 100x . Today I'm starting to finally feel better. My lungs are still aching but not as bad. I finished the z-pack but my doc gave me another one that I'll start tomorrow. I'll be finished with Tamiflu in 2 days. Don't know if it helped but doesn't feel like it hurt... Keep praying, if you were, not out of the woods just yet. Thank you everyone! Rich

Amazingly I kept myself out of the hospital, I almost caved in about 100x . Today I'm starting to finally feel better. My lungs are still aching but not as bad. I finished the z-pack but my doc gave me another one that I'll start tomorrow. I'll be finished with Tamiflu in 2 days. Don't know if it helped but doesn't feel like it hurt... Keep praying, if you were, not out of the woods just yet. Thank you everyone! Rich

Anyone ever try Tamiflu?

Anyone use Tamiflu before?

I've been using Musinex and coughing up bloody yucky mucus Thank you for your prayers!

The temp problem was a one time thing from whatever I have... My mucus has blood in it, not coughing up straight blood alone.. I do want to get tested for TB, never been before...

Update: Finally went to bed at 6am until 11:30am, woke up in the same lousy condition only thing is now I have more blood in my mucus. i spoke to the dr and asked if he tested me for virus, he said not really, but he decided to presc Tamiflu too. Any every use Tamiflu or both antibiotics at the same time?

Another sleepless night, it looks like. maybe i'll sleep in the morning lol

Thank you Anna

I don't think hormonal/neurol can cause pneumonia, but the infection sure is affecting everything so wouldn't be surprised if it hit there. It just happened tonight so will tell doc tomorrow..

did a mist come out of it that you breathed in. When my son had Pneumonia at 2 years old I remember they had me give him Albuterol Nebulizer treatments, but he was wheezing, were you?