tachyfor50years Posted April 18, 2012 Report Share Posted April 18, 2012 Hi everyone,I just wonder if any of you guys has a prscription bottle written on it ( take one tablet by mouth at bed time or every day..bla bla bla for POTS?I have been asked a lot of times by doctors, nurses and techs what is my Tenormin or Inderal or.....for, is it for high blood pressure? usually I say: NO, I have low blood pressure! and that is where I get all the strange looks from them!My point is, I may ask my Dr. next time when he puts the refills in, to write: (For POTS).I would like to see your opinions guys.Gentle hugs for all of you! Quote Link to comment Share on other sites More sharing options...
Chaos Posted April 18, 2012 Report Share Posted April 18, 2012 Since there are no meds for POTS, I'd be kind of surprised if a doc would write that on the script. All these meds are being used "off label" for POTS treatment.Let us know if you get someone to do this. It's an interesting idea. Quote Link to comment Share on other sites More sharing options...
corina Posted April 18, 2012 Report Share Posted April 18, 2012 Lately my doctor told me that all doctors in my country (the Netherlands) have been told by insurance companies to write diagnoses on their scripts. So far they (doctors) haven't done that but it seems it won't take long before they'll have to. That would mean POTS would be on my scripts. As there are no meds specifically for POTS (and I doubt many people diagnosed) I'm afraid my ins. comp. will stop paying for my meds (they've already started questioning Octreotide). I'm very worried about all of this. Quote Link to comment Share on other sites More sharing options...
tachyfor50years Posted April 18, 2012 Author Report Share Posted April 18, 2012 Long time a go, I was on one of the (Antidepressants) for POTS then one day my boss told me: (I know that you have Depression ! ! ! ) man! I was so mad and replied: (NO I don't have Depression, I am taking this med for my rare condition); I never mentioned POTS or Desautonomia for many reasons. I wished if I had a label on my med stating (POTS) would have made the issue so much easier for me.I just wonder if our illness has a code recognized by Health Care Professionals. Quote Link to comment Share on other sites More sharing options...
corina Posted April 18, 2012 Report Share Posted April 18, 2012 Tachy I lately read that there is no code in the USA for POTS (can't remember where I read it sorry). My pill boxes (I'm on an SSRI) also say Depression, I've once asked the Pharmacy to get rid of that but later it came back on. To me it isn't that important as I can't hold a job, it was just that I didn't like it. Sorry it caused you trouble though! Quote Link to comment Share on other sites More sharing options...
tachyfor50years Posted April 18, 2012 Author Report Share Posted April 18, 2012 Dear Corina,Yes you are right, there is no code for POTS yet.I found this interesting link for searching codes for illnesses, diseases and syndromes:http://www.findacode.com/icd-9/796-3-nonspecific-low-blood-pressure-reading-icd-9-code.htmlThank you for your kindness. Quote Link to comment Share on other sites More sharing options...
jenglynn Posted April 18, 2012 Report Share Posted April 18, 2012 Oh this is perfect timing for a question like this!!!! I'm on Long Term Disability and had to apply for SSI. I knew it would happen sooner or later, but after not working since Sept. my employer fired me due to inability to work. Like I said: expected. I guess I didn't REALLY think it through- how much would change. I'm now on Badgercare (Medicaid for Wisconsin) and not only did I have to cancel all my Mayo appts, and testing... I have to find new doctors for many specialists that I see. It took MONTHS to get all the pre-auths done for Mayo now I start over???? On the the point- four of my drugs are not covered my Badgercare- Adderall. I take this with Paxil and I know it's controversial but it has made the difference in a huge way in my cognitive functioning. Not covered because I don't have an ADD or ADHD diagnosis. I take a pretty low dose but we've tried other things but nothing else helps. My RX ran out last week but I had several really bad days o ER the past couple weeks so I didn't take it so I took my last dose today. Drugs can be used for other purposes! I swear, it's one thing after the next. They also don't cover my pain medication- cant remember the name- I had just started it- but it was working really well at managing my neuropathy, knee, EDS, and head (10 concussions) pain all together which doesn't happen. The other 2 are minor and I'm not so worried- but it seems like as soon as I finish one battle the next one shows up. I know- not positive and probably inaccurate- and I'm tired and crabby but I just what a level playing field. I do have some other "news" that doesn't at all go with this- I will put in a different thread.Jen Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted April 19, 2012 Report Share Posted April 19, 2012 Wow, I've never thought about this before. Really, no code for POTS? I think we deserve one! I wonder what our Doctors put down for diagnosis when submitting to insurance co's? Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted April 19, 2012 Report Share Posted April 19, 2012 My endocrinologist was very irritated when he could not find the code for POTS the other day. I did not know to tell him there is not one.That is terrible they would not allow for these drugs Jen. There are many, many medications used for off label purposes. It just means the company that makes the med does not feel like spending the money for the series of studies required for approval. This is often true of a medicine used for another purpose that has been around for a while, now being used in a new market, as the company feels they will not turn enough profit to be worth it. Many medications can be used for multiple purposes and the doctor is the one who makes that decision. It is sad that insurance might dictate that only medicines approved for a specific use will be used for that, not what the doctor thinks is best. ( I do not know about the how the system in the Netherlands works either, as I know nothing this. ) Quote Link to comment Share on other sites More sharing options...
corina Posted April 19, 2012 Report Share Posted April 19, 2012 We don't have a code for POTS/dysautonomia either in the Netherlands. Health ins. comp. are trying to dictate more and more and have started questioning the Octreotide I'm on. When they would decide to longer pay for the Octreotide I'd be back at square one and back in bed/powerchair. My gp assured me that he will fight (with neuro and cardio) them for what he's worth, for them to keep paying.It's very frustrating but I try not to think about it as right now there's nothing I can do. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted April 19, 2012 Report Share Posted April 19, 2012 Oh Corina, I'm saying a prayer that it will work out for you to stay on the octreotide. I know it's been such a life-changing medication for you. Sorry you have to go through the anxiety of wondering what your prescription coverage will look like. Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted April 20, 2012 Report Share Posted April 20, 2012 Having a primary and 2 specialists plus evidence of it working may help a lot. Your own advice not to worry is the best but sometimes for me the hardest. Quote Link to comment Share on other sites More sharing options...
tachyfor50years Posted April 21, 2012 Author Report Share Posted April 21, 2012 By the way, my Tenormin was not prescribed for POTS neither for high BP, I have been taking it for preventing migraines. Quote Link to comment Share on other sites More sharing options...
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