Long Term Disability - Do You Have To Try Meds??

[AllAboutPeace]

For those of you that have gone through this...I'm just wondering...

Since there are no meds specifically designated for treatment of POTS (just meds for other medical problems that work for various symptoms, etc). Is it a requirement by LTD standards that you have to have tried those various meds that could potentially help a symptom or two or do you just have to have followed what your doc recommends? I'm in Canada, but my limited knowlege so far is that the process seems similar to US, so I'd be curious to know how it's worked in other places as well.

The only thing so far that my internist mentioned was trying a beta, but he didn't recommend it based on my low bp and brady. I agreed and I'm hesitant to experiment alot right now given that none of the docs I see have experience with POTS or autonomic testing facilities. I am traveling to see an EP/cardiologist soon, so she may recommend something, based on her knowledge and experience. But, in the event that she doesn't have a wonder drug in her top drawer, I'm trying to prepare for the next step...

Thanks

[Anoj]

i have always wondered about this; i think it's an excellent question!

[Frugalmama]

I'm at the reconsideration stage with CPP, as I was turned down the first time through. I had been diagnosed with POTS, and 10 months later the diagnostic criteria changed so I didn't fit the criteria any more (which I found out through CPP - my doctor didn't even bother to tell me). I was told that I was turned down because I didn't have a diagnosis and therefore hadn't had treatment. So, from that, I would guess that you have to try all reasonable remedies. But like you said, there is nothing proven, so if your specialist is willing to say that you've done all you can, that might be sufficient. Good luck - it's a long process (I applied March 2011) and most people are turned down the first time through.

[AllAboutPeace]

I'm at the reconsideration stage with CPP, as I was turned down the first time through. I had been diagnosed with POTS, and 10 months later the diagnostic criteria changed so I didn't fit the criteria any more (which I found out through CPP - my doctor didn't even bother to tell me). I was told that I was turned down because I didn't have a diagnosis and therefore hadn't had treatment. So, from that, I would guess that you have to try all reasonable remedies. But like you said, there is nothing proven, so if your specialist is willing to say that you've done all you can, that might be sufficient. Good luck - it's a long process (I applied March 2011) and most people are turned down the first time through.

Thanks for responding. Is the diagnostic criteria something different than the 30 bpm increase with standing? It's so ridiculous that they can turn you down without an official diagnosis. The label or lack of doesn't make you any more able to work...argh! I've heard some awful stories about situations from those who have applied in the past, for other well understood illnesses, so I can't even imagine how they will deal with POTS. I'm hoping that the minimal exercising I can do will count towards treatment.

I hope that you are able to have some success with your appeal. If you have any tips on the whole process I would be grateful

[brethor9]

I live in Canada and was approved for CPP the first time. I was diagnosed in Hamilton with POTS/OI and autonomic dysfunction......I think the real reason why I was approved was my specialists in their consult notes and in the CPP documents were very clear and concise that I was severely disabled by my illness and severe chronic fatigue and could not work. We also sent over 65 pages of documentation from the onset of my illness (you can never send too much information ) and information about the illness (because its rare and most medical working for CPP probably hadnt heard of it ...) basically you have to be very black and white and leave no doubt that you are disabled by it....at the time I applied I was just started on my first medication. Just dont take no for an answer....... good luck!

Bren

[AllAboutPeace]

Oh, thanks so much, Bren! Wow, very impressive that you were able to get approved the first time!!

I did send some different studies and Pots info along, but I really think my doc support will be lacking - partly because they know very limited about Pots and truthfully I find it really hard to convey the full scope of this illness to them in a doc visit (even though they are typically 45 mins to an hour).

[brethor9]

Peace

I think the big thing for me that won it was the absolute chronic exhaustion and the fact I could not maintain homeostasis at times. Ask your doctors to not sugar coat anything....there is part of the documents where you explain the impact on your life....dont be afraid to really slam the point home that you are unable to function period (I know now when I see my GP I tend to down play how craptacular I really feel because she doesnt understand the illness itself...she keeps asking when I will return to work lol!.so I understand you on that point....luckily I have a specialist in Hamilton that just looks at me and knows )) not sure where you live but is there any way you can get in to see an actual POTS specialist?

duh just reread your first post and you are going to see an EP....good....when you see her be sure to be very clear with her that you cannot function and that you are disabled enough to not be able to keep working....ask her to make sure she writes that in her consult note so you can apply for disability

[AllAboutPeace]

Bren, I think I filled out every square inch of paper available to write my various impairments and symptoms on in my forms!!lol. I just hope my doc notes will support all of that. It is my family doc who filled out the forms - but it is my internist who deals with my pots - so my family doc was filling it out based on the internists notes. Seems like a bit of a stretch... My doc did ask me some questions before he filled it out about what I am able to do, so I hope that helped him to get a sense of how things are.

....luckily I have a specialist in Hamilton that just looks at me and knows )) not sure where you live but is there any way you can get in to see an actual POTS specialist?

That is my dream to have a doc like that I will reassess things after I see the EP, but the next step would definitely be to travel further to see a specialist. Hopefully she (EP) has some POTS experience because she's in a larger center, but from what I've heard it's not promising. Unfortunately I'm meeting with her immediately following my TTT so I know my brain is going to be useless at that point! I'm in Atlantic Canada, so it would be a bit of a trek to get to a pots specialist in either Montreal or Hamilton, but if I need to I will.

Thanks for the tips!

[Frugalmama]

A lot of the research had 30 bpm or over 130. On the day of my TTT,I mistakenly went to the wrong hospital and we had to rush to a different one. After speed walking through the hospital, my HR stayed at 105 for 45+ minutes while they set up, waited for the DR, did a baseline, etc., and my HR stayed up around 126-128. The doctor diagnosed me with POTS (and sent that same info to me GP), so I applied for disability last March. In November they asked the cardiologist for more info, and she wrote back that based on the new consensus document, the criteria was 30 bpm so I didn't have it. So frustrating, since my resting HR is normally in the low 80s, and my typically symptomology is that it jumps to around 126. So I was turned dowm because I "didn't have POTS" and therefore hadn't had treatment. Sigh. The funny thing is that they turned me down the day I was in Hamilton at the autonomic lab. They wouldn't wait to make the decision until I had the info back from Hamilton, they based it solely on the cardio's letter from here (and even though that same cardio is the one who got me provincial funding to travel for the appointment). I will say too, though, that the adjudicator I had was quite hostile (rude?) to me, and the new one I have now seems much more kind. I think a lot of it really does have to do with who you have, unfortunately.

Anyways, sorry for the tangent . If you do end up traveling to Hamilton, please ensure that you know who you will be seeing. It was a very long trip for me (flying, then driving), and I saw a resident who knew far less than I did about this illness. He told me a number of things that I know were completely untrue, and looked slightly panicked when I asked more in-depth questions. For me, it was a huge waste of time to go, because we didn't learn anything new.

Oh, and since you had your GP fill out the forms, they will most likely come back to you and require information from your internist as well, especially if the Gp is referencing test results/observations from the internist!

[AllAboutPeace]

Frugalmama,

I can definitely relate to what you said happened with your hr when you had to change hospitals. It's soo frustrating!!! The same thing happened to me when I went in to qualify for the Levine exercise program. My resting hr is 50's/low 60's, but when I went in that day it was 95, so I didn't get the 30 rise in hr. I couldn't believe it! That had never happened before and hasn't happened since. I was devastated at the time, but In the end I think it was a blessing because there is no way I would have been physically able to do that program anyway...

I think you should have qualified anyway because I thought it was anything over 120 (http://circ.ahajournals.org/content/117/21/2814.full ) or maybe the new consensus document doesn't state that anymore (??). I hope things go well for you this time

Thanks for the tip about Hamilton. That must have been disheartening after such a long journey. It's disappointing enough travelling 15 mins to talk to someone who doesn't get it!!