Dad Behaving Badly!

[Hippycrip]

I'm new to Dinet,having been finally diagnosed with Disautonomia in January of this year.I've had the symptoms since 2003.Needless to say I've been through the gambit of doctors and specialist.My symptoms have steadily gotten worse over the last 6 months.Wednesday my daughter came home from school to find me unresponsive in my wheelchair.She was able to get me inside and called my sister.By the time she got there I had regained consciousness.This in itself is not unusual as I pass quit often when my heart rate goes down in the low 30's. What made this day unusual is that it kept happening,one right after the other.After an hour of this they called the ambulance and off I go to the hospital for the 7th time this year.3 times for bradycardia and 4 times for injuries from bradycardia falls.I gave the doctor at the ER my file that I keep with me and he did all the usual stuff.After about 4 hours he came back and told me that because I had Disautonomia(which he had never heard of),that there was nothing he could do for me.This was the same hospital that I had been admitted to twice before for symptoms nowhere near as severe as I was having that day. That's when dad started behaving badly.I'm passing out four or five times in a row and having anxiety attacks from air hunger due to a partially paralyzed diaphragm.I readily admit I lost my temper when I just took everything off(IV,heart monitor,and O2)and rolled outside.Now my family is mad at me because they think I've given up somehow. Nothing could be farther from the truth. I'm just fed up with the ********I honestly don't see any sense in going to the ER any more. I don't know what to do when this happens again.Has anyone been at this point before? Does anyone have any suggestions or similar history?

[Bigskyfam]

Newly diagnosed . Maybe a cardiologist or internal med guy since you have a diagnosis. Someone you don't have to resell your story to every time.

[gjensen]

I am not in your shoes, so I can only relate in a sense. I can understand your frustration, and your family's concern.

I also get the emergency room docs that can only deal with conventional things.

Is there someone that would be on call for the ER? Can information be put in your file about how to handle certain situations. I know that you have your file, but maybe they are scared to go that route. Maybe something that they have on file? I am grasping at straws trying to be helpful.

I have an idea what it feels like to be in your situation and be a Dad.

Keep plugging at it. We have to do all that we can do, and that is all that we can do.

[Bigskyfam]

Oh my. Spell check got me... Retell your story not resell. Gjensen glad you posted

[kitt]

Have you been tested for NCS? (Neurocardiogenic Syncope)? Your bradycardia suggests that to me. It is sometimes seen in patients with pots. NCS is another form of dysautonomia.

You would need to see a cardiologist or neurologist who understands dysautonomia and can do a cardio TTT, (not a pots TTT).

Good luck with this. You might benefit from a pacemaker if you have NCS. It would keep your heart rate from dropping to 30 and keep you from passing out. This is not medical advice, but simply a suggestion that you have your doctor look into this.

I have both pots and NCS, so I can't help but suggest you speak to your autonomic doctor about this.

Best,

K

[Alison]

Sorry you are having such a bad time. My symptoms are a lot milder than yours, but I have also reached the point of feeling that the doctors just aren't/can't help. I live in the UK and I think we have less access to doctors who might 'get it' here (depending on whereabouts we live). I think my husband was somewhat frustrated with me yesterday. I was driving and my husband (sat beside me) commented that he was wondering if I was ok to drive given all the jerking I was doing (I too wondered that when the jerking first started, but I seem to be ok). He asked me what the doctor said about the jerking. I had to confess that I had never mentioned it to the doctor.

[corina]

Welcome to the forum Hippycrip! Reading through your post I thought you may need to see a cardiologist to figure that low heart rate out. Have you been able to see one who knows about dysautonomia? We have a list of physicians on our main website, in case you're intereste, here's a link: http://www.dinet.org/index.php/physician-list

[MightyMouse]

I feel for you dude... personally I think going to the ER is a complete gamble b/c you never know if you're going to get someone as your lead doctor who is great or someone who is dismissive, or even worse, thinks you're either faking or a mental case. In all my years of ER visits (I had 3 this month), I've had exactly ONE ER doc who knew about my disorder and was super helpful...it was the very last visit I had two weeks ago and I almost cried with happiness when the doctor said to me "you know, sometimes with autonomic problems you can have serious gut motility problems, and you can also have a much longer recovery from the gi flu that any typical person would get over in a few days could take you weeks." I literally started laughing when he said that! and he gave me a quirky look, so I said, "you're the first ER doc I've ever had who "gets" it!" Big smile. and I said thank you too...

Nina

[Hippycrip]

Thanks for all the encouragement and suggestions. I see Dr.Chemali and his PA Grace Jordan in Norfolk Va for the Disautonomia. I had a positive TTT but I'm not sure if they tested me for NCS. My cardiologist is Dr.Martin Goldberg of Newport News Va.He has suggested a pacemaker when I was hospitalized earlier this year,but he wanted to try non surgical remedies first.At first the Fludrocortison and high salt diet seemed to be working,but then the syncope came roaring back with a vengeance. Thanks again for all the info.I will investigate these and keep you all posted.

[kitt]

Dr Chemali should be able to help you sort this out without a problem.

One of the problems for patients wit NCS is that studies have shown that pacemakers don't always work and some patients continue to pass out. You can Google NCS and pacemaker studies or ask Dr. C about it. All dysautonomia doctors are very familiar with these studies.

My sense on the reason for this is that pacemakers can't stop blood from pooling so the problem persists.

Generally though dysautonomia experts recommend a pacemaker with a situation such as you describe. It was recommended to me at Mayo MN recently when my heart rate went to 30 at 13 minutes on a cardio TTT and my heart stopped beating for 7.5 seconds. Obviously I passed out....

My cardiologist here at home is very familiar with these studies and he's also a surgeon who puts pacemakers in people. In my case we decided together to 'wait and see'...

In your case though it seems you're passing out on a regular basis and it's keeping you from driving? Generally driving is one of the biggest issues. If you pass out when driving due to bradycardia a pacemaker is pretty much the only option. It may be a god send for you.

Am wishing you the best and glad you have good doctors to help with this. Keep us posted.

Best,

K

[masumeh]

If ur going to Newport, VA, u might be able to head up a few hours to Fairfax/Sterling and see Dr. Abdullah's clinic. He and his team of cardiology doctors and nurses are almost exclusively treating Dysautonimia (esp POTS), and they rock in terms of understanding, empathizing, and keeping on the latest edge of what really works. At my last visit, my doctor told me that a recent review following up POTS patients who had pacemakers found they are not helpful for that group (don't know if ur problem would br different though, since it's brady rather than tachy for u). I had brady episodes that knocked me unconscious and unable to be roused (basically the definition of a comma, btw) when I was on Midodrine, until we cut my dose in half, then those episodes subsided for the most part. I never went to the ER bc there's nothing they can change about it and the drama is stressful, let alone the physical stress of the trip, the testing, the lights and the disturbance to my schedule (sleep, eating, etc.). Really useless. No, actually detrimental. For me, I only go to specialists who know my disease and can help me. Dr. Abdullah's office takes my calls all the way from another country (I live in KSA now), and gives me advice or tells me when it's time to come in. When I lived in VA,before i found my POTS doc, I found ER visits terribly futile. Even though my family freaked when I started refusing to go, they knew it was pointless to go too, just felt they "had to DO Something". now, if I know I need an IV, I bring a nurse to my home from a private clinic. If I don't know what to do, I start looking online for a specialist and make the nearest appt I can.

Your case seems more severe though. Do these hospital admissions result in a good outcome for u? I mean, u get the right treatment?

If u know u need hospitalization, u should advocate for urself, and is ur family is with u so should they.

Maybe next time, bc u r sure to encounter plenty of ignorance about dysautonomia so I'm sure, unfortunately there will be a next time, try to stay cool and request to talk to another doctor, one who is familiar with Dysautonomia, or suggest they allow the neuro on call to evaluate. Self-advocacy is really important. U r also advocating for others with similar conditions when u insist u have the right to appropriate and timely care, which is simply the duty of any physician to comply.