I am at the point...

[MTRJ75]

This is a rant post. No need to reply. 

Had a very bad physical day yesterday. My worst in a while. The good news is that I've been able to gently nudge the neuro in a direction I've been wanting to go with medications for awhile since nothing else we've done has worked to this point. Lots of physical cramping last night, but I was able to sleep eventually without excessively medicating myself. Minor victory. 

Woke up feeling tolerable today, which is as good as it gets. I spent 10 minutes outside with the dog on a nice day and now I can barely hold myself up to type. 

EVERY SINGLE TIME I feel like I can do something very minor and physically normal, I nearly end up in the ER. EVERY SINGLE TIME! 

I'm at the point (not even getting to anymore...AT the point) where I'm so sick of being stuck on this couch that either I'm going to overcome some of these challenges soon or this condition is going to have to kill me trying. 

There are things that need to be done and nobody else is going to do them. I'm depending on my mother (now entering her late 70s) for most of my needs including food preparation. There's a life outside the solitude of this couch that needs to be lived. 

Oh, and the insurance is denying Ivabradine and Clarinex prescriptions. That's another fight I'm going to have to store up energy for. 

Yet, with all of this, I can't even convince disability that I can't function normally. Second hearing scheduled for next month where they're going to call in a "medical expert" that very likely knows nothing about dysautonomia and I'll probably react in a way that will be detrimental to my case due to the frustration. Expert just doesn't mean what it used to anymore. Now days, anyone with an opinion is an "expert". 

What would happen if I just decided to keep pushing and refused to let this disease keep me on my back? I've never actually passed out yet. If I can no longer stand, I'll collapse on the floor and then get back up. My hands and arms are in agony just typing this. But what if I just choose to ignore it all and do until my body just stops doing? What's the worst that happens? My heart decides to stop and then nobody has to hear me complain anymore? 

That's it. End of rant. Feel free to add your own, ignore or respond with the secret cure to all ills. 

[Pistol]

1 hour ago, MTRJ75 said:

What would happen if I just decided to keep pushing and refused to let this disease keep me on my back? I've never actually passed out yet. If I can no longer stand, I'll collapse on the floor and then get back up. My hands and arms are in agony just typing this. But what if I just choose to ignore it all and do until my body just stops doing? What's the worst that happens? My heart decides to stop and then nobody has to hear me complain anymore? 

@MTRJ75 when I first became ill I pushed through all of the ( very obvious ) symptoms and ended up fainting all of the time at work and then , when that did not stop me, started taking seizures. All of these caused by HPOTS. At the time I fought like heck to remain able to work and tried power through these episodes, my HR and BP through the roof most of the time. Doing this definitely worsened POTS for me. But don;t worry - your heart will not top beating!--- I can really relate to how you feel, I have been there many times. And having to fight with insurance and SSDI at the same time that you are trying to just sum up enough energy to stand up and go to the bathroom just feels like you get pushed over the edge. The exact same thing happened to me. But know this: eventually things do get better. I am happy to hear that your doc is willing to try new meds with you. POTS meds often do not get approved b/c there are no FDA approved drugs for POTS. If needed talk to a case manager at your insurance - they often can help with these issues. And in the end it is up to your doctor's ability to document that decides whether or not a drug gets approved. And regarding SSDI: most of us have to fight all the way to the hearing with the ALJ. But once you get to talk to human and let them hear and see what it's like for you most of us get a[roved for SSDI. The problem is that POTS is so misunderstood and little known. 

Hang in there, and don't push yourself!!! We don;t die from POTS but we can make things worse. 

[MTRJ75]

This little rant must have activated something in my brain because I temporarily felt a bit better afterward. 

1 hour ago, Pistol said:

@MTRJ75 when I first became ill I pushed through all of the ( very obvious ) symptoms and ended up fainting all of the time at work and then , when that did not stop me, started taking seizures. All of these caused by HPOTS. At the time I fought like heck to remain able to work and tried power through these episodes, my HR and BP through the roof most of the time. Doing this definitely worsened POTS for me. But don;t worry - your heart will not top beating!--- I can really relate to how you feel, I have been there many times. And having to fight with insurance and SSDI at the same time that you are trying to just sum up enough energy to stand up and go to the bathroom just feels like you get pushed over the edge. The exact same thing happened to me. But know this: eventually things do get better. I am happy to hear that your doc is willing to try new meds with you. POTS meds often do not get approved b/c there are no FDA approved drugs for POTS. If needed talk to a case manager at your insurance - they often can help with these issues. And in the end it is up to your doctor's ability to document that decides whether or not a drug gets approved. And regarding SSDI: most of us have to fight all the way to the hearing with the ALJ. But once you get to talk to human and let them hear and see what it's like for you most of us get a[roved for SSDI. The problem is that POTS is so misunderstood and little known. 

Hang in there, and don't push yourself!!! We don;t die from POTS but we can make things worse. 

I felt like having the hearing over the phone was a blessing because it meant I didn't have to travel. The downside was that the judge wasn't able to see me physically and I couldn't collapse right in front of her in the court room. I fail to see what additional information we can provide her. If the so called medical expert answers questions like most doctors I've encountered and undermines the physical seriousness of my condition, I may lose it in court. I'm going to request that my lawyer really attempts to discredit them via their likely lack of understanding regarding dysautonomia. 

 

[RecipeForDisaster]

I’m working with a case manager and it’s helping! She’s from my insurance. She fights for me... getting orders, making doctors and pharmacies do what they’re supposed to, getting authorization. I wish I got her involved much earlier!

 

If I remember right, you’re seeing people in Boston? Feel free to PM me about that. 

[p8d]

I am so sorry that you are going through this. I tried powering through in the beginning and ended up very, very much worse. When I hit the point where I prayed to die every single night and my body wouldn’t (I was extremely ill, just out of hospital with severe malnutrition) I finally *decided* that I had to do everything within my power to get better and never go backwards again. That meant getting home physical therapy for 2 years followed by 2 years in person, trying every drug available, compression stockings every waking moment, 3 liters of oral rehydration solution and after 18 months finding a med that helps me sleep. Flash forward 6 years and many, many meds and setbacks later and I am a normal weight, exercise most days and while still housebound, even before the pandemic, I don’t pray to die every night. I have made peace with my body and the extremely limited life I now have. It’s all down to acceptance and being extremely stubborn. I just won’t willingly go back to that state again. Most importantly I learned my limits and usually pace myself but it’s always a moving target. I am very lucky that I have great Drs who fought  for SCIG, and are open to new medications and extremely knowledgeable in dys. Specialists are definitely worth getting to.

I won SSDI in 6 weeks on first application without a lawyer if that gives you an idea of my condition. This video has extremely useful advice https://vimeo.com/434576980 on getting SSDI with dysautonomia. I was honest in my answers and focused on “activities of daily living”. I was, and am, completely dependent on my husband. Pistol is correct, the decision is very much based on what your Drs put in your chart.

 

[MTRJ75]

5 hours ago, RecipeForDisaster said:

I’m working with a case manager and it’s helping! She’s from my insurance. She fights for me... getting orders, making doctors and pharmacies do what they’re supposed to, getting authorization. I wish I got her involved much earlier!

 

If I remember right, you’re seeing people in Boston? Feel free to PM me about that. 

NJ 

Does everyone have a case manager or do you have to request one? How does that work? 

[MTRJ75]

3 hours ago, p8d said:

I am so sorry that you are going through this. I tried powering through in the beginning and ended up very, very much worse. When I hit the point where I prayed to die every single night and my body wouldn’t (I was extremely ill, just out of hospital with severe malnutrition) I finally *decided* that I had to do everything within my power to get better and never go backwards again. That meant getting home physical therapy for 2 years followed by 2 years in person, trying every drug available, compression stockings every waking moment, 3 liters of oral rehydration solution and after 18 months finding a med that helps me sleep. Flash forward 6 years and many, many meds and setbacks later and I am a normal weight, exercise most days and while still housebound, even before the pandemic, I don’t pray to die every night. I have made peace with my body and the extremely limited life I now have. It’s all down to acceptance and being extremely stubborn. I just won’t willingly go back to that state again. Most importantly I learned my limits and usually pace myself but it’s always a moving target. I am very lucky that I have great Drs who fought  for SCIG, and are open to new medications and extremely knowledgeable in dys. Specialists are definitely worth getting to.

I won SSDI in 6 weeks on first application without a lawyer if that gives you an idea of my condition. This video has extremely useful advice https://vimeo.com/434576980 on getting SSDI with dysautonomia. I was honest in my answers and focused on “activities of daily living”. I was, and am, completely dependent on my husband. Pistol is correct, the decision is very much based on what your Drs put in your chart.

 

My lawyer had my neurologist fill out a form. This was done right in front of me. I thought that his answers would get me an easy decision. He basically said that I can't even sit up for very long on most days. Wasn't enough. 

I haven't gotten to the point of praying for death, but I've certainly reached the point where I don't care and want this to end one way or the other. 

On the one hand, I'm thankful I don't have a family that I wouldn't be able to support. On the other hand, I really only have help with meals (thank God!), which makes things a whole lot harder. If I can't drive, I don't get there. If I can't clean it, it doesn't get clean. If I can't do it, it doesn't get done. 

[cmep37]

I really sympathise with you but I'm another person who had mild to moderate POTS, followed the advice of doctors who all thought I was depressed/stressed to exercise more and ignore how I was feeling and ended up with a really severe case.  I do sometimes wonder if I hadn't pushed myself whether my POTS would be as bad as it is but that way lies madness! I was bedbound for 2 years and I still am in no way able to lead an independent life.  I can only make food like sandwiches or things that just need reheating and even then I often burn/cut myself when I tremor or have a dizzy spell!  My parents are slightly younger than yours (late 60s rather than 70s) and I can just about cope when they go on holidays for a fortnight but I crash badly when they return.  I do worry about what will happen in a few years time if I still need care and they do too...  On the whole I have made my peace with POTS - I have had enough of a cycle of overdoing things and then taking weeks to recover before doing the exact same thing again except every time it takes a little longer to recover and the recovery isn't to quite the same level as before.  That's not to say I don't still overdo things at times but I do think about it and decide if it is worth the inevitable recovery period! 

[kwiggins1158]

I've been there too! Though I'm still homebound, my PoTS is fairly well controlled with meds and salt water. My daughter was bedridden with PoTS all through high school but now she's 21 and off all PoTS meds. Ivabradine was a game changer for her! Don't give up! Since she was under 18 at the time, insurance wouldn't pay for it so we used a Canadian pharmacy.  Just have your doc fax them your prescription and they will mail to you. I don't recall the price but it was definitely affordable! Good luck!

[MTRJ75]

On 3/13/2021 at 4:30 PM, kwiggins1158 said:

I've been there too! Though I'm still homebound, my PoTS is fairly well controlled with meds and salt water. My daughter was bedridden with PoTS all through high school but now she's 21 and off all PoTS meds. Ivabradine was a game changer for her! Don't give up! Since she was under 18 at the time, insurance wouldn't pay for it so we used a Canadian pharmacy. Just have your doc fax them your prescription and they will mail to you. I don't recall the price but it was definitely affordable! Good luck!

TY. Looks to be about $80. Obviously, going to try the case manager with the Ins Co first. 

There must be an amazing appreciation for life to go from bed bound to freedom while still at a young age. 

[RecipeForDisaster]

On 3/13/2021 at 12:22 PM, MTRJ75 said:

you call your insurance company and request one. It took me about 5 days to get one. I’m not sure if all of them offer this, and I think you have to qualify by having a certain number of visits or specialists or whatever. Basically, be complicated. 
 

NJ 

Does everyone have a case manager or do you have to request one? How does that work? 

 

[MTRJ75]

On 3/12/2021 at 6:22 PM, MTRJ75 said:

 I can't even convince disability that I can't function normally. Second hearing scheduled for next month where they're going to call in a "medical expert" that very likely knows nothing about dysautonomia and I'll probably react in a way that will be detrimental to my case due to the frustration. Expert just doesn't mean what it used to anymore. Now days, anyone with an opinion is an "expert". 

 

After speaking to my lawyer, it turns out I don't have to really worry about this because he's found out that the medical expert is a MENTAL health expert. It seems like the judge is unwilling to grant physical disability and wants to treat the dysautonomia as a potential mental disability. If I continue to try and push the physical aspect of the disability, I likely won't get anything. Perhaps my best shot is to say "Yes, I have anxiety when my heart rate is sitting at 200 with skipped beats at rest and yes, it's extremely depressing being trapped on the couch all day." 

[cmep37]

I'm of the opinion that you say whatever you need to in order to get the money you're entitled to!  Will anything you say ever appear on your medical records?  If not then what have you got to lose by emphasising the mental effects of POTS - I can't believe anyone can be tachycardic at rest and not feel stressed and anxious or not feel depressed when they lose their independence and their previous lifestyle.  I'm in the UK and when filling in benefits forms I do mention physical and mental issues POTS causes - I get no points for mental issues though I do get plenty for POTS's physical effects and have always been awarded maximum benefits.  Good luck!

[MTRJ75]

2 hours ago, cmep37 said:

I'm of the opinion that you say whatever you need to in order to get the money you're entitled to!  Will anything you say ever appear on your medical records?  If not then what have you got to lose by emphasising the mental effects of POTS - I can't believe anyone can be tachycardic at rest and not feel stressed and anxious or not feel depressed when they lose their independence and their previous lifestyle.  I'm in the UK and when filling in benefits forms I do mention physical and mental issues POTS causes - I get no points for mental issues though I do get plenty for POTS's physical effects and have always been awarded maximum benefits.  Good luck!

The bolded part is my main concern with all of this. Otherwise I'm over even caring the hows and whys of it. Will it make it harder to convince future doctors I need more than psychological treatment? 

[E pots]

On 3/21/2021 at 3:15 PM, MTRJ75 said:

After speaking to my lawyer, it turns out I don't have to really worry about this because he's found out that the medical expert is a MENTAL health expert. It seems like the judge is unwilling to grant physical disability and wants to treat the dysautonomia as a potential mental disability. If I continue to try and push the physical aspect of the disability, I likely won't get anything. Perhaps my best shot is to say "Yes, I have anxiety when my heart rate is sitting at 200 with skipped beats at rest and yes, it's extremely depressing being trapped on the couch all day." 

What was the result?

[E pots]

29 minutes ago, cmep37 said:

 

I do get where you are coming from - I'm 5 foot 10 and weigh 138 pounds on a good day -- over the last 17 years of POTS I've lost about 30 pounds and I really, really have to work at keeping weight on.  I lost 5 pounds with Covid and only managed to put 3 back on again and even that was a huge struggle.  I vomit about 5 days out of 7 as I retch until I'm sick when my HR rises quickly enough to stimulate my vagus nerve.  As standing for more than 5 minutes or walking more than about 500m makes my HR double you can see the problem!  The only thing the doctors have been able to do for me is give me Zofran/Ondansetron which gives me a couple of extra minutes before I start to gag.  It is so embarrassing when I'm out of the house/with people I don't know well as I can't move very quickly and it is impossible to hide that I'm throwing up....  

Are you on any meds or are you trying to manage solely with increased fluids and compression?  It definitely sounds like you might benefit from trying a BB or fludrocortisone or midodrine.  I've been on all 3 plus ivabradine without success but I know I'm very unlucky and that most people find something that helps control their HR.

 

On 3/12/2021 at 8:35 PM, Pistol said:

@MTRJ75 when I first became ill I pushed through all of the ( very obvious ) symptoms and ended up fainting all of the time at work and then , when that did not stop me, started taking seizures. All of these caused by HPOTS. At the time I fought like heck to remain able to work and tried power through these episodes, my HR and BP through the roof most of the time. Doing this definitely worsened POTS for me. But don;t worry - your heart will not top beating!--- I can really relate to how you feel, I have been there many times. And having to fight with insurance and SSDI at the same time that you are trying to just sum up enough energy to stand up and go to the bathroom just feels like you get pushed over the edge. The exact same thing happened to me. But know this: eventually things do get better. I am happy to hear that your doc is willing to try new meds with you. POTS meds often do not get approved b/c there are no FDA approved drugs for POTS. If needed talk to a case manager at your insurance - they often can help with these issues. And in the end it is up to your doctor's ability to document that decides whether or not a drug gets approved. And regarding SSDI: most of us have to fight all the way to the hearing with the ALJ. But once you get to talk to human and let them hear and see what it's like for you most of us get a[roved for SSDI. The problem is that POTS is so misunderstood and little known. 

Hang in there, and don't push yourself!!! We don;t die from POTS but we can make things worse. 

What is caseworker? I am applying for SSDI and there is a caseworker but is she really on my side?

[Pistol]

Hello @E pots - a case manager at a hospital or insurance company ( here in the US ) is a person thats familiar with your specific case. They usually ask a lot of questions about your situation, diagnoses etc, and then advise you what the ( hospital, insurance etc ) can do for you. An insurance case worker will be a liaison between you and the insurance. 

[KiminOrlando]

An SSDI case worker is the one that represents the government. They gather paperwork and may even make recommendations about approval. I don't know how much authority they have, but they have input. They are not on your side. Nobody from the government is on your side. 

[E pots]

39 minutes ago, Pistol said:

Hello @E pots - a case manager at a hospital or insurance company ( here in the US ) is a person thats familiar with your specific case. They usually ask a lot of questions about your situation, diagnoses etc, and then advise you what the ( hospital, insurance etc ) can do for you. An insurance case worker will be a liaison between you and the insurance. 

I got denied for long term disability through my private insurance. My caseworker documented only things that were negative to my case. Now with SSDI the case workers the same I would assume. How do I get a caseworker? Do I call my medical insurance company?

[E pots]

On 3/12/2021 at 6:22 PM, MTRJ75 said:

This is a rant post. No need to reply. 

Had a very bad physical day yesterday. My worst in a while. The good news is that I've been able to gently nudge the neuro in a direction I've been wanting to go with medications for awhile since nothing else we've done has worked to this point. Lots of physical cramping last night, but I was able to sleep eventually without excessively medicating myself. Minor victory. 

Woke up feeling tolerable today, which is as good as it gets. I spent 10 minutes outside with the dog on a nice day and now I can barely hold myself up to type. 

EVERY SINGLE TIME I feel like I can do something very minor and physically normal, I nearly end up in the ER. EVERY SINGLE TIME! 

I'm at the point (not even getting to anymore...AT the point) where I'm so sick of being stuck on this couch that either I'm going to overcome some of these challenges soon or this condition is going to have to kill me trying. 

There are things that need to be done and nobody else is going to do them. I'm depending on my mother (now entering her late 70s) for most of my needs including food preparation. There's a life outside the solitude of this couch that needs to be lived. 

Oh, and the insurance is denying Ivabradine and Clarinex prescriptions. That's another fight I'm going to have to store up energy for. 

Yet, with all of this, I can't even convince disability that I can't function normally. Second hearing scheduled for next month where they're going to call in a "medical expert" that very likely knows nothing about dysautonomia and I'll probably react in a way that will be detrimental to my case due to the frustration. Expert just doesn't mean what it used to anymore. Now days, anyone with an opinion is an "expert". 

What would happen if I just decided to keep pushing and refused to let this disease keep me on my back? I've never actually passed out yet. If I can no longer stand, I'll collapse on the floor and then get back up. My hands and arms are in agony just typing this. But what if I just choose to ignore it all and do until my body just stops doing? What's the worst that happens? My heart decides to stop and then nobody has to hear me complain anymore? 

That's it. End of rant. Feel free to add your own, ignore or respond with the secret cure to all ills. 

Ditto

[Pistol]

4 hours ago, E pots said:

How do I get a caseworker? Do I call my medical insurance company?

Normally you just call your insurance and ask to talk to a case manager. Then you simply ask them whatever question you have. 

 

4 hours ago, E pots said:

I got denied for long term disability through my private insurance. My caseworker documented only things that were negative to my case.

You can appeal that decision. In most long term disability insurances you must be unable to work for at least 6 months, depending on your company. You could request a review and ask for another case worker. There should be instructions on how to go about an appeal in your paper work. I am so sorry - it is hard enough to get through each day, now you have to deal with this! Do you have someone who can help you?

[Dystasysta]

I’m so sorry your going thru all this it brings back memories for me . I was declared disabled in2010 ish but was rejected first time no one even knew what an autonomic system was ( nor myself much and I was working on medical at that time in coding abd patient  advocacy a late in life change of career plan. What is that old saying I think it’s from the old testament Man plans and God smiles. I’m not sure where you live as far as country or state but I hear more and more people are learning about how debilitating autonomic dysfunction can be and the underlying conditionThe Cannes company yet can your doctors write it up differently sometimes a rose by any other name gets approved.

[E pots]

On 3/13/2021 at 7:05 AM, RecipeForDisaster said:

I’m working with a case manager and it’s helping! She’s from my insurance. She fights for me... getting orders, making doctors and pharmacies do what they’re supposed to, getting authorization. I wish I got her involved much earlier!

 

If I remember right, you’re seeing people in Boston? Feel free to PM me about that. 

How does that work?  Do you call your health insurance company and ask for a case worker?  Then what?  If I am really sick and can't get my neuro to see me does the case worker help?

[Pistol]

@E pots - my insurance ( and so do most ) offers a case manager that works with you, your providers and pharmacies etc to manage your health. They can advise you on most issues that arise regarding your healthcare and providers. I just called my insurance and asked for the case manager, they put me right through. Especially if you are too sick to manage everything on your own they will help you, and they can even help you get help with certain services if you are homebound ( this completely depends on your insurance though ).