I Was Told That I Am Too Old For....

[tachyfor50years]

Participating in a Dysautonomia research!

Since there is no POTS Dr in my state and having no hope to be seen in one of the autonomic centers (my insurance

won't approve it), I decided to take 2 weeks off from work and help my peers and researchers, but sadly, I did not meet

their age criteria.

I know very well that doing such thing will not be easy nor fun but I really wanted (before I die) to be seen by one of those

POTS experts here in the US beside the great feelings I could have had from serving humanity.

Now I am left with no other options and all a lone with my symptoms and sufferings.

Please help if you have any suggestion.

[jpjd59]

What state are you in? Was it a research center that said that you were too old for their study?

[bellgirl]

My center in Birmingham, Alabama told me last year, that if I had waited one more year, I wouldn't have made the cut off age of 55. I find this rather interesting...they may have to change this stipulation, if they get enough patients that they turn away. I find this rather sad, actually . This wasn't just for research purposes either, it was for treatment!! Don't get me wrong, I love my doctors, but I felt like I was going to die without treatment...I'm so glad I went when I did...this doesn't make any sense to me!! So just because we suffer longer, we don't qualify? What determines this criteria? Sounding a bit scary to me...just saying

[tachyfor50years]

Yes jpjd59, it was a research center that said that to me in an email! but it is not in my state.

Yes Kimbellgirl, it is very sad.

[Elegiamore]

I'm so sorry it didn't work out for you. It's so sad...for all of us without Cadillac insurance.

In my case, I have paid out of my pocket for a majority of my autonomic clinic treatment.

Here's what I did: I got the treatment I needed. I waited for the bill. I then called the financial depts. and asked for:

1. a big discount if I paid in full that day (only worked if I only owed $1000-2000, of course).

2. Usually I worked out a payment plan.

It took me eons to pay the Cleveland Clinic and Mayo off. But without the Cleveland Clinic, I would have been long gone by now. I had to pay for hotels for many weeks; over a seven year period, I "lived" in Cleveland for about five months while getting treatment. That, with room service, was VERY EXPENSIVE; I'm still paying that down on ccards since 1996.

(You cannot be sued for non-payment for medical bills (at least in the state of Georgia) if you make at least a $50 a month payment.)

Next I went through my IRA and my husband's IRA last. I ran up over $50,000 of credit card bills until I got approved for SSDI disability and paid them down.

For that matter, you could get a tilt table anywhere your insurance pays for it and then send all your medical records to the Syncope Dept. at the Cleveland Clinic; they will give you a paper consultation for $600 cash.

My point: THERE HAS TO BE A WAY. You MAY be wasting more money getting useless treatment from regular doctors with your insurance than paying out of pocket for the right care. Good luck.

[bellgirl]

Can you go to a cardiologist that is familiar with POTS? Where do you live? Are you on any medication? So sorry you are so sick

[tachyfor50years]

Elegiamore,

Thank you for your input.

Sorry, I can't pay those huge medical bills, travel expenses out of my pocket , I have a part time job.

[tachyfor50years]

Dear kim,

There are tons of cardiologists, a bunch of EPs and neurologists in my state, but most of them are interested in structural heart diseases and procedures or they are not interested in treating my condition for many reasons.

I have been to over 20 of them and have given up on them; I have tried to educate those local doctors but they blamed me for my devastating illness. They have treated a partial symptom by itself and they have missed or denied the whole picture (dysautonomia).

The last EP that I saw, did my 3rd TTT (not him but his PA) brushed me off the moment he realized that I already been through 3 heart cathterization (they wanted to do ablation).

Yes, I take few meds but the only one for POTS is Tenormin.

Thank you for your kindness.

[bellgirl]

I've read that ablation is NOT a good thing to do with POTS and only if you have Inappropriate tachycardia by itself. I tried atenolol (Tenormin), and it was too short acting for me, and made me feel like I was dying. I stayed on it for about a month, and I was crying all the time, for no apparent reason, and HR and BP were to low, too, so my doctor changed my beta blocker to Bystolic. It's half life is 12 hours, which is twice as long as atenolol, but it doesn't yet have a generic, so it is kind of expensive...It's made a world of difference for me, though.

I was so tachycardic with palpatations all the time, that it would wake me up in the middle of the night. So it didn't matter what position I was in, and I was exhausted!! I am so sorry you have had so much trouble with doctors. When I first had symptoms 14 years ago, I went to a neurologist first, then a cardiologist...neither of which picked up on my symptoms, being a nurse, I knew something was terribly wrong. I had high blood pressure at the time, and they put me on Lisinopril. I took that for a few years, then ended up with angioedema...could have been dysphagia from dysautonomia, who knows, and then was put on Micardis/Losartan, which I am still on with the Beta blocker. I'm also on a diuretic, but a small dose because of edema in my ankles...but of course, I still had hills and valley blood pressure, and was still sick with a lot of crazy symptoms, so I finally bit the bullet and traveled to Birmingham, where my ENT there, diagnosed me with autonomic vertigo. I had two episodes that had me in bed for days with vomiting, and I was dizzy all the time by that point.

That's when I was sent to the Autonomic Disorders Center of Alabama in Birmingham. I have a sleep apnea specialist, and a neurologist in Birmingham, also...I had already looked up dysautonomia, but thought I couldn't have it because of my hypertension, even though my other symptoms pointed to it. I thought I had MS. It's funny, my neurologist tells me now that my symptoms are similar to MS, and he tested me for it..., but I had no lesions. I have a family history of stroke and aneurysm, so I get a little concerned when I get neurological symptoms along with the cardiac issues. I have MVP, too...I'm a mixed bag

I hope you eventually get the help you need...I was desperate when I finally was able to get an answer!! I wish more doctors were aware of this disorder. There is a wonderful video that DINET put out on youtube that explains us very well. It is 45 minutes, but it is worth watching, and sending it to everyone you know, including your previous doctors. It will raise awareness, and help those who are struggling without knowing what is wrong with them. I have a friend whose brother in law has these symptoms, and she is sharing it with him. We need to raise awareness!!

[tachyfor50years]

You mentioned (Autonomic Disorders Center of Alabama in Birmingham), do they do all the tests for Dysautonomia? Did your insurance cover everything?

Thanks for the Youtube.

[CharmedLinz]

I can't really help with the frustration as I feel it myself most of the time.

My biggest anxiety is caused by waiting for bills to show up in the mail, knowing that I cannot pay them and will have to fight them..... long story but I've been on Medicare now since December and I'm not sure what to expect from where or who.... I hate going to the mailbox.

I see Watkins at the Birmingham clinic mentioned and will tell you what I can.

My Cousin was diagnosed there with POTS as a 14 year old on the verge of death, this was 15 years ago when even less was known than is known now about all of this.

When I started showing similar symptoms 3 years ago I called and they were more than willing to see a family member.

However at the time my insurance was covered by my state and I could not see out of state docs. So the Clinic told me what to have done locally which was, a TTT which I'd already had, a halter monitor for at least 48 hours, a stress test, and an echo.

They would just charge for the appointment which turned out to be cheaper than seeing my local cardio and the Doc spent 3 hours with us initially.

When we left we paid the bill which was between 2 and 3 hundred, but they also took my insurance info and said they would try and run it through.

Not sure how they got it done, probably because they were able to give me an actual diagnosis to go with the local testing but they got my insurance to cover it.

This was in 2010. I went back last year for a check up which included them doing their own echo and stress test. Asked them to try my insurance again and if not we would make payments. Again the bill was cheaper than here. The 2 tests and appointment were somewhere around $500 I think.

It took them a few tries but it got covered.

I love the staff and Dr. Watkins. There are 2 female Docs I beleive also.

They will do TTT's, Echo's, and Stress Tests right there in the office. As far as I know the do NOT do Qsart or sweat testing or any of the Valsalva testing.

I can't speak for the other Docs there but Watkins will only deal with the "heart" part of this..... period.

He follows Grubbs protocols and encourages endocrine support for thyroid testing because to date he quoted to me that nearly 70% of their patients end up having some type of Thyroid problem.

To remain under the clinic's treatment you have to be seen in their office once a year. This meaning if they need to give you prescriptions and be your treating physician.

The only other drawback is that the Doctor I see there, not sure about the others, has a strict rule about not verbally communicating with your other physicians, not enough time.

So you get your workup and notes.

You can contact the nurses as a patient as you need to and they respond quickly by phone or email.

Oh and while it is about 8 miles from the clinic there is a very good longterm "hotel" that's only around $60/night.

Though both times I've been to the Clinic everything has been done and scheduled in one day. But we travel from 2 days away so a little down time and visits with family are a must for us.

Hope this info helps somewhat.

Moderators if I've said anything not allowed feel free to edit, my brain was having trouble staying away from the no-no's.... not sure if I caught them all.

[corina]

Don't worry CharmedLinz, you did fine. Thanks for sharing all the info!

[bellgirl]

You mentioned (Autonomic Disorders Center of Alabama in Birmingham), do they do all the tests for Dysautonomia? Did your insurance cover everything?

Thanks for the Youtube.

Yes, all I had to do is pay a copay at the Center in Birmingham (affiliated with Trinity Baptist). My Dr. is female and her name is Dr. Phillips. I have seen her 3 times since my diagnosis in August. I've had to call three times, because of medication changes, change in some blood work that my internist did, and sent a picture of my unequal pupils. The nurse always calls me back. Dr. Phillips spends all the time I need with questions, checks my heart rate and blood pressure every time I go, and makes sure I'm doing Ok, and of course, writes prescriptions. She had my internist do a holter, since I live several hours away, but it became unplugged in the middle of the night, and I was already on a beta blocker, so I don't believe it was accurate, because I do still have palpitations and erratic heart rate on occasion, just not as often since being put on the medication. The first day I was there for about three hours and had stress test, tilt table, echocardiaogram and EKG, and was diagnosed the same day with MVP and dysautonomia. Then I was sent to the Sleep Disorders Clinic of Alabama in Birmingham, affilitated with UAB with Dr. Adams for sleep studies ( 2 nights ), and have a Cpap for sleep apnea, too. I also have a neurologist Dr. Riser (John), who is affiliated with Brookwood Medical Center in Birmingham, as well, where I had blood work for autoimmune diseases, MS, Lyme's, Sjogrens, etc., and had an MRI and MRA of my brain. I like all my doctor's in Birmingham. They are all very competent. If you want other tests done for other diseases, you need to go the the specialists for those issues. My internist is very good about doing tests for me when I ask, like my vitamin D levels and MG blood work that I asked for...I was deficient in D. Every year I have CBC, Chemistries, Cholesterol, Thyroid testing by my internist. My internist also gave me a smooth muscle relaxant for bladder spasms, that also works for my bowels, as well. She also prescribed my Losartan, asthma and allergy meds, when needed.

Thanks Charmed for answering, too

[tachyfor50years]

Kimbellgirl and CharmedLinz,

Thank you both for your kind replies, I especially appreciate all the time you spend to answer my question.

Kimbellgirl,

I am glad that you have good doctors, to know you have a great doctor is comforting.