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Still looking for dyautonomia doctor.... Jacksonville, FL.


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So I've got a: PCP, Oncology, Endocrinology but still can't find dysautonomia. My PCP doesn't understand it and keeps saying she'll find an endocrinologist to help and she really downed the idea of saline iv's and talked about all these risks and my mom told her the alternative was having no quality of life. I do have appointment at UAB autonomic testing lab but they send the results to a doctor, that I don't have. I've seen all the lists but they aren't very extensive and some on the list have already denied seeing me... Just curious is somebody knew of some Jax cardio that happens to understand the medications really well and can interpret the potential results? 

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I agree with @TCP - not all autonomic specialists ( actually a lot !!! ) are cardiologists. I assume you tried all of the autonomic clinics in the US?

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Yes some are cardiologists and some neurologists but I can't find anyone. She already asked Baptist Health neurology and nobody responded. I have an appointment to UAB autonomic lab but they just do the testing, so I need somebody local. I'm getting sicker and sicker and traveling is too hard, it's really nearly impossible as it leaves me crashed, fatigued, sleepless, incapacitated, and with horrible post exertional malaise (I just returned from Jax Mayo oncology and endocrinology and I'm in dread of traveling again). Just thought I'd ask in case somebody knew of someone. 

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@CallieAndToby22 - I know what you mean about being too sick to see the doctor ( haha! ). When I was at my worst travelling out of state to see my specialists 8 hours one way, staying in a hotel and then travel back 8 hours would land me in bed for weeks each time. But I did it because there was no other way for me to get proper treatment. I hope when you go to UAB for testing they will provide you with a contact of someone who will treat you after their diagnosis. 

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On 7/27/2021 at 6:44 AM, Pistol said:

@CallieAndToby22 - I know what you mean about being too sick to see the doctor ( haha! ). When I was at my worst travelling out of state to see my specialists 8 hours one way, staying in a hotel and then travel back 8 hours would land me in bed for weeks each time. But I did it because there was no other way for me to get proper treatment. I hope when you go to UAB for testing they will provide you with a contact of someone who will treat you after their diagnosis. 

Thanks, yes it's horrible and I'm not recovering these days. My beds are uncomfortable, so much adrenaline, bladder. I was just hoping for relief now. It's been horrific since October and I asked my doctors then to refer me. 

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I saw Dr Cheshire in Jax Mayo's Neuro department.   He deals with dysautonomia but couldn't help me.  He wants me to see their cardiologist because I had an abnormal exercise tolerance stress test. I haven't gone yet because I just lost my insurance since my employer let me go over all this.  Once I figure out getting insurance again I will let you know who they send me to.

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10 hours ago, POTSie78 said:

I saw Dr Cheshire in Jax Mayo's Neuro department.   He deals with dysautonomia but couldn't help me.  He wants me to see their cardiologist because I had an abnormal exercise tolerance stress test. I haven't gone yet because I just lost my insurance since my employer let me go over all this.  Once I figure out getting insurance again I will let you know who they send me to.

Thank you. I am already at Mayo for oncology and endocrinology. I tried to make an appt with a local cardiologist who had a review that said he was great with POTS and they set me up with someone else and couldn't tell me if he treated POTS, they had no idea what I was talking about with "dysautonomia", "orthostatic intolerance", etc. Edit: And so sorry you lost your insurance. 

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2 hours ago, POTSie78 said:

@CallieAndToby22Thank you.  Hope you find a good Dr close by soon.  I don't know Jax very well.  My EP is in Daytona.  He's been the only one that has helped me get some relief but so far it's been limited to the usual.  Propranolol,  salt and fluid and an ILR.  

Yea I'm having great difficult finding anyone and most have horrible reviews online and in a FB florida dysautonomia group my mother is in. There is a Jacksonville Jaguars football player whose wife has POTS and I watched a video and he is a big supporter for awareness etc. but the neurologist they had on the news just talked about fluid intake and salt and it's like um no, my case is so severe I can't even sit up or stand for more than 5 minutes without passing out. So frustrating. 

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7 hours ago, CallieAndToby22 said:

but the neurologist they had on the news just talked about fluid intake and salt

yep.-, that's what dysautonomia treatment boils down to for the general medical community, no matter what the specialty is. In their mind all POTS patients ( NCS, OH etc all the same ) need to do is drink water and eat salt, and maybe take a BB. If that does not work it's on the patient, or maybe in the patient's head. Nobody but an experienced and well informed autonomic specialist wants to look further. IMO this is b/c if they DID look into it they would have to acknowledge that everything they learned up until the 1990's was only half baked. And which doctor would want to admit THAT?

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@MikeO You always need to check with your doctor first, but in general with people suffering from neurogenic cardiogenic problems ( I have neuro-cardiogenic syncope as well as hyperadrenergic POTS ) increased salt intake along with increased fluids is recommended because this increases blood volume and BP. If you retain fluid you may have additional problems other than dysautonomia. 

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41 minutes ago, Pistol said:

If you retain fluid you may have additional problems other than dysautonomia. 

Oh i do. Just pointing out to be careful with salt. By all means i do understand the blood volume and BP. I am just doing the same a different way.

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1 hour ago, MikeO said:

Oh i do. Just pointing out to be careful with salt. By all means i do understand the blood volume and BP. I am just doing the same a different way.

I can't retain fluid just urinate it out so I have to drink filtered Walter with salt tablets dissolved in it. Still I'm going to the bathroom constantly. If I get saline iv's that is the best treatment for me thus far. For me it's never enough salt, my blood pressure is still desperately low. My ex boyfriend used to urinate a lot as well and I told him to increase salt intake and it helped, we both have the same rare blood cancer. Edit: Also there is a thing called "low blood volume POTS" and I read about a guy getting saline infusions every week and after a year with continued infusions he recovered. 

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3 hours ago, Pistol said:

yep.-, that's what dysautonomia treatment boils down to for the general medical community, no matter what the specialty is. In their mind all POTS patients ( NCS, OH etc all the same ) need to do is drink water and eat salt, and maybe take a BB. If that does not work it's on the patient, or maybe in the patient's head. Nobody but an experienced and well informed autonomic specialist wants to look further. IMO this is b/c if they DID look into it they would have to acknowledge that everything they learned up until the 1990's was only half baked. And which doctor would want to admit THAT?

So ridiculous!!!!!! These doctors need to become informed and do some research!!!!?????? 

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27 minutes ago, CallieAndToby22 said:

I can't retain fluid just urinate it out so I have to drink filtered Walter with salt tablets dissolved in it. Still I'm going to the bathroom constantly. If I get saline iv's that is the best treatment for me thus far. For me it's never enough salt, my blood pressure is still desperately low. My ex boyfriend used to urinate a lot as well and I told him to increase salt intake and it helped, we both have the same rare blood cancer. Edit: Also there is a thing called "low blood volume POTS" and I read about a guy getting saline infusions every week and after a year with continued infusions he recovered. 

I know never an easy solution. I am just glad i don't need the IV's. As to peeing i do it a lot but have found a balance between taking water and other drinks and the color of the urine. I don't take salt tablets because of my heart too much and i pump to hard. I do drink electrolytes which help. Vitaminwater works for me. no sugar or salt and plenty of B vitamins to help the nervous systems maybe?. Sleeping at a 30 degree angle at night helps as well. and as usual when in the mood will drink a hot V8 cause i can ;)

 

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12 hours ago, MikeO said:

I know never an easy solution. I am just glad i don't need the IV's. As to peeing i do it a lot but have found a balance between taking water and other drinks and the color of the urine. I don't take salt tablets because of my heart too much and i pump to hard. I do drink electrolytes which help. Vitaminwater works for me. no sugar or salt and plenty of B vitamins to help the nervous systems maybe?. Sleeping at a 30 degree angle at night helps as well. and as usual when in the mood will drink a hot V8 cause i can ;)

 

Well the problem is I have severe Interstitial Cystitis and I can't drink anything with acidity, citric acid, potassium, cabonation, caffeine, etc. So I can't drink electrolyte drinks or anything flavored with fruit and V8 is tomato based and all would flare my bladder for weeks then I would be urinating every 5 minutes. Unfortunately I am limited to water, salt water, and vanilla almond milk and that's it. I also have bladder problems from the dysautonomia like bladder outlet obstruction so it's been a mess for me trying to get any rest or sleep since I was very young. 

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5 minutes ago, CallieAndToby22 said:

I have severe Interstitial Cystitis

So sorry you have to go thru this. I did not know. Yes the electrolyte drinks can be harsh on the stomach i do have days where i can not tolerate them.

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3 hours ago, MikeO said:

So sorry you have to go thru this. I did not know. Yes the electrolyte drinks can be harsh on the stomach i do have days where i can not tolerate them.

I have stopped doing the salt tablets in water for now because I've done it for years and it just makes me nauseous. The cardiologists always tell me to drink loads of fluid and I can't because of my bladder which already keeps me from rest, sleep, and I am in constant horrific bladder pain. I wish I could drink all the gatorade in the world because it does help but it's not an option. When I was at Mayo getting ready for scan I had to have full bladder and drank about 4 bottles of water that morning and I was flared for a few days because with IC our bladders are so sensitive. I wouldn't complain but it has cost me so much sleep and simple things like not being able to go to the movies or concerts b/c of going to the bathroom so much. In my state they won't give any pain medication for this condition they want to do amitriptyline, a tri-cyclic anti depressant, but when I asked a group of IC patients about weight gain they collectively said they gained about 50lbs and it didn't help that much plus it interfered with my other medications; so I think it's sad that people are left in pain so often. The good news is the saline iv's help so much and my body retains it and it actually helps my bladder and I actually don't go to the bathroom so much and overall it helps tremendously with getting more cerebral blood flow, the bad news is the doctors won't do it for me and I need a port. Everything I've read said hey it's just saline the side effects are minimal but they are just worried about ports.... In regards to IC there isn't much treatment because they don't know what causes it and the one FDA approved medication for it called "elm iron" was recalled because it made long term patients start having terrible vision and eye problems and I took it for years without any benefit, glad I quit it when I did. 

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14 minutes ago, CallieAndToby22 said:

but they are just worried about ports

I would be concerned about getting an infection with a port just not sure what other concerns are?. I go a lot even seems at times after peeing i go and pee again. even with my latest trip to the ER for a fall the fluids they pumped in went right thru me. So only thing i can do is to replace the fluids i get rid of. if i don't i get really fatigued and feel ill

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1 hour ago, CallieAndToby22 said:

they want to do amitriptyline, a tri-cyclic anti depressant,

I was offered this for my hEDS pain - I took it for a couple of months and it did help but I had to stop as it made my POTS much worse.  It gradually raised my resting heart rate quite a bit - from 60ish to 90ish - I was still getting the same 80-90 BPM rises in HR after being upright for a few minutes though so as you can imagine at 180 BPM it was not pleasant!   My mum takes it and thinks it is really helpful but then she doesn't have POTS... 

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4 hours ago, MikeO said:

I would be concerned about getting an infection with a port just not sure what other concerns are?. I go a lot even seems at times after peeing i go and pee again. even with my latest trip to the ER for a fall the fluids they pumped in went right thru me. So only thing i can do is to replace the fluids i get rid of. if i don't i get really fatigued and feel ill

https://www.healthrising.org/blog/2017/04/15/saline-pots-chronic-fatigue-syndrome/

 

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