Dr Appt On Wed. What Should I Ask?

[PackersFan]

I have my month follow up with my electrophysiologist this week. I saw him last month after my TTT and he said I had dysautonomia. (he's actually the one that pulled up this web-site on his laptop in the office and introduced me to it). He started me on Florinef. Not sure it's made much of a difference the last month. I'm gonna go over all my symptoms again and see what he says. I'm wondering if there's anything specifically I could/should be asking him. Fire away any questions that I should bring up.

Definitely plan on asking him about the muscle tension and feeling of 'adrenaline dumps' and see if we can check my cortisol levels. My GP doctor wants to send me to Cleveland Clinic because we haven't found anything for years and he's not sure what else he can do. But he said to see what the electrophysiologist says. I'd like for him to confirm its for sure dysautonomia and not something else. Any medications I should ask him about that could help with symptoms? (Dizziness, fatigue, weakness, twitching, anxiety)

Thanks all

[arizona girl]

Love to help you out, but would really need more details. Dysautonomia is the umbrella term covering all the different subsets. What exactly happened to you during your tilt table, hr, bp, fainting? Florinef is usually prescribed to those who get hypotension and or syncopes.

Autonomic symptoms can also cover other functions then heart rate and blood pressure, from temperature control, sweating and gi issues. Do you have muscle weakness or get a lot of infections, are you hypermobile or have allergy like flushing reactions.

An ep cardio is really only going to focus on the heart and if it's functioning right. They ruled out any other heart dysfunction, correct? A diagnosis of dysautonomia may be just the start of the diagnostic process. It is often secondary to other causes. An attempt to rule out other illnesses should be considered. Many times a cause can not be found and it is considered idiopathic. Treatment plans will be different depending on what you find out.

Good luck tomorrow!

[MomtoGiuliana]

Hmm, I am not sure I agree that an EP will only look at the heart function. My EP is a specialist in autonomic dysfunction. People with POTS and other dysautonomias from all over the region go to him for treatment. Hopefully this EP will be knowledgeable about dysautonomia and be able to pinpoint a diagnosis and work with you on treatment, if that is what the problem is.

I do agree that an EP will not likely be able to pinpoint the CAUSE of your dysautonomia (eg, EDS, autoimmune, etc). Not all specialists agree as to whether it is useful to know the cause, or if it even can be determined. My EP discouraged me from any further testing, although in my case, my symptoms are generally well controlled.

Florinef is a common treatment that helps by expanding blood volume.

This is a bit dated, but you could review this list of possible treatments:

http://www.dinet.org/what_helps.htm

I would definitely bring a list of symptoms to the doctor. If you have been measuring your bp and pulse, I would bring that data.

Hope it goes well tomorrow.

[PackersFan]

Love to help you out, but would really need more details. Dysautonomia is the umbrella term covering all the different subsets. What exactly happened to you during your tilt table, hr, bp, fainting? Florinef is usually prescribed to those who get hypotension and or syncopes.

Autonomic symptoms can also cover other functions then heart rate and blood pressure, from temperature control, sweating and gi issues. Do you have muscle weakness or get a lot of infections, are you hypermobile or have allergy like flushing reactions.

An ep cardio is really only going to focus on the heart and if it's functioning right. They ruled out any other heart dysfunction, correct? A diagnosis of dysautonomia may be just the start of the diagnostic process. It is often secondary to other causes. An attempt to rule out other illnesses should be considered. Many times a cause can not be found and it is considered idiopathic. Treatment plans will be different depending on what you find out.

Good luck tomorrow!

During the TTT, the first part was pretty normal. Nothing really happened from the laying down, to the upright position. It was when he put the nitro under my tongue that my heart rate jumped up, blood pressure dropped, and then i passed out.

I'm a little confused now though. The Dr. said that dysautonomia can be a primary issue and not just secondary to something else. I've been going to Dr.'s for the past 3 years to try and figure out what's going on. All tests have come back normal except for the TTT. I've been to a neuro the past couple years for fatigue/wekness feelings that come and go. Plus the twitching, (i was convinced of ALS for a bit). But MRI's, EEG's, NCS' all came back fine.

I don't get a lot of infections. I do feel like this all really started about 3 years ago after some serious GI issues in which nausea and stomach pain was around for a month and they couldn't find anything wrong. I finally went to a naturopath and he treated me for a parasite and it cleared the issue up.

I will say this though. At the tail end of the GI issues i had an upper endosocpy and after that procedure from a couple years ago the heady, off balance feeling has come. I wonder if something happened during that procedure or if the drugs they gave me messed something up.

I have no hyper mobility. Every once in a while the GI issues flare back up, but for the most part it's pretty good. The symptoms are mostly feeling off balance and a little dizzy/lightheaded feelings. I also get issues in the morning right when i wake up where it feels like i'm going to die. Feels like my heart is racing but i check my bp and hr and they're both fine. Wondering if cortisol levels are off or something.

Thoughts? Thanks for the response!

[arizona girl]

That helps, but I can see why your having questions and not sure where to go. I also don't disagree with what Mom G has said either, except ruling out a primary cause. Seeking a primary cause really depends on how your presenting over all and whether the cardio medications and volume expanding treatments stop symptoms. If first line treatment works and controls symptoms and you stay stable then you might not want to look further. In my case, first line treatment did not work and I continued to decline. I turned out to have a combination of several serious immune illnesses that damaged my small fiber autonomic nerves. Treating those has improved my symptoms, however with what I have and with the treatments currently available, my doc said there would be no cure, but we could manage it. If I would stop my treatment plan, I would revert back and start declining again. Even with treatment though I still have my ups and downs, but i think the ups are starting to gain over the downs.

It sounds like you have looked into a variety of causes. It is interesting about the gi issues and the symptoms starting after the scope. If you haven't already disclosed that to your docs, that info might help them. Did they ever run you through vestibular testing? They do move your head around in some peculiar ways when doing those scopes. It could be possible that those meds were a factor. Would vertigo describe what your experiencing? Trust what your gut and instincts are telling you, they are usually right. Also, did your neuro check you for small fiber neuropathy? That could explain some of the other autonomic and sensory symptoms. A neuro that specializes in autoimmue neuromuscular disease is the subspecialty to see for that. There have been several members who also started with dysautonomia symptoms after an infection or viral attack. If you read Chaos's posts, she talks some about it.

If you haven't already I'd ask to look at the actual TTT test sheet they wrote up during the test. You are allowed to have a copy of it. Mine was crazy looking. BP and HR both went up, but I also did not pass out until the nitro. The nitro did duplicate what happens to me in real life however. I understand nitro can sometimes lead to a false positive result.

Take care and let us know how it goes.