keep searching for a local doc, or just go to an autonomic lab?

[JuliettOscar]

At what point do you seek an appointment with a specialist autonomic lab? Is it commonly used for initial autonomic testing? Or reserved for more severe/debilitating cases? I'm trying to figure out where to go next. My symptoms are not debilitating but do affect my day to day living and I would like clarity to whats going on and hopefully, find ways to manage symptoms and get a little relief. I've already struck out with one cardiologist (not only did I disagree with his assessment and dx of VVS, but he was arrogant and condescending, I won't be going back). I have had recent tests & imaging to rule a lot of stuff out (holter, treadmill stress test, EKG, echo, xrays, chest ct, brain mri, labs) and everything is coming up normal. I'm thinking I could keep searching for a local doctor familiar with dysautonomia (there really aren't any in Las Vegas that I know of), or just get it done right from the start in an autonomic lab.  Is that jumping the gun if I haven't exhausted local resources? 

[Pistol]

I can answer that - I was EXACTLY in your shoes! --- When I started with POTS symptoms I first saw my - awesome - PCP. He had no clue why I was passing out and had tachycardia all of the time, so he reffered me to state university for TTT. I had stress echo and TTT and was told I have NCS ( same as VVS ) and "will just keep passing out". So I got on the computer and found info on POTS - it fit. Asked my PCP to be sent to major autonomic center - went there TWICE ( 9 hour drive each way ) and had autonomic testing. They told me I have nothing wrong with me. A Year later - after another 3 cardiologists at my state university - I had another TTT performed by an EP and ( although it was clearly positive for POTS ) was told I am "hysterical". My PCP was not happy with that because he personally saw me pass out all over the place and also witnessed my tachycardia upon standing. Went to another - highly recognized - autonomic specialist and was diagnosed with hyperadrenergic POTS based on both symptoms AND blood tests for catecholamines. I have been treated for POTS ever since. …. DO NOT go with ANYONE not familiar with - or properly trained in - the diagnosis and treatment of dysautonomia. They are confused and most likely will cause more harm than good. I was lucky - the "good" docs in my story realized that I was truly ill but that they did not know how to treat me. They are still my go-to docs and my life is richer because of them - but they were not the ones who diagnosed me. Unforunately it appears that we need a proper diagnosis to be taken serious by the medical community. Do not feel like you are jumping the gun - if you have valid concerns then make an appointment ASAP - the waiting lists are long!!!!! --- Best wishes - you are doing the right thing to get checked by a true professional!!!! 

[nik1980]

GO TO SPECIALIST ,although you may need to wait (I am still waiting for Mayo Clinic). Generally, doctors do not have any idea what dysautonomia is and what to do with it.  Not necessarily their fault, but it is what it is with this crazy disease.  I was lucky in that the neuro who ruled out MS had heard of dysautonomia and sent the referral to MAYO for me.  He freely admitted that it was not his speciality and wanted to get me to someone who specializes but he recognized the symptoms thankfully. The problem is is that the specialists are few and far between.  I was able to get into Dr. Grubb's APN, Bev, who was fantastic.   As Dr. Grubb has a year wait I did not hesitate to see Bev.  I am still on the wait list at Mayo to narrow down the diagnosis but Bev was able to diagnosis and start me on some meds.  

[StayAtHomeMom]

I think a clinic setting wouldn't be too bad, but you also need someone "local" to help manage you after your diagnosis too. My "local" specialist is 3 hours away so my PCP helps as well. I have plans to go to a clinic setting soon to try to find an underlying cause after my oldest son gets checked for POTS.

I am thinking there is a Mayo clinic in Arizona. So maybe go on that waiting list and still look locally while you wait. 

[yogini]

Dinet ad Dysautonomia International have lists of doctors experienced in Dysautonomia. I would check one of those lists and try to work with a Dr locally.  Clinics are not great with ongoing care so you will need to find a local dr anyway.  There is a lot of good information so you can read and direct your dr if you find a good local dr. It is a lot of trial and error with drs and medications. On the clinic if you can get an appointment and it’s covered by your insurance it doesn’t hurt to go, though.

[JuliettOscar]

Thanks everyone. You've eased my fears a bit. I have a great PCP! When I brought up my orthostatic issues, he was genuinely interested, knew a little and referred me to the cardiologist. There are no specialists in Las Vegas on the physician lists and every online local group has the same problem - looking for good docs. I went ahead and requested an appointment with Mayo myself. I see my PCP for a follow up next month, I'll talk to him about referring. 

During the first appointment with the cardiologist, he looked at the HR & BP data I brought with me and immediately said, "Oh, this is VVS. It could be orthostatic hypotension, maybe delayed OH. It doesn't matter. Salt, water & exercise". (I have never fainted, or even felt like fainting). He told me it couldn't be POTS because they usually have other things going on, but he never asked if I did and didn't really let me talk (he definitely wanted to lead the discussion with his questions, expecting only quick concise answers). So I figured I would at least get through the cardio workup with him (holter & treadmill test). The more I saw him though, the worse he got (he snickered a lot, at my choice of exercise, at the fact that I'm not already dedicating an hour a day to exercise anyway, etc). His staff wasn't much better, nice, but clueless lol As I was getting wired up for the stress test (standing still in one spot), my HR was hovering around 100 (resting is usually 55-65). She tried to soothe me and tell me not to be anxious and that she wouldn't start if I'm over 100 (better get moving quick then lady, because it only gets worse!).  The last appointment, he said my elevated heart rate is just an exaggerated response to exercise, even after seeing that a stand test has my HR climb to the 160s. "Salt, water & exercise and see me in 6 months". No thank you. 

[bombsh3ll]

18 hours ago, JuliettOscar said:

"Salt, water & exercise and see me in 6 months". No thank you. 

Quite right! 

I wholeheartedly agree with the advice to get on the waiting list for a specialist in dysautonomia. Yes there is a small chance you might strike lucky with a doctor in your local area but a much greater chance that you will get either poor care, no care, or treatment that harms you (including being dismissed and ridiculed not just the wrong meds).

I am not entirely sure how the insurance system works in the US, but perhaps you could get on a waiting list now and still try local doctors in the meantime. If you did get lucky you could always cancel the specialist appointment but if not then you know you have something in the pipeline. 

I live in the UK and I fought for 3 years to get a diagnosis. I was diagnosed with POTS but even now after more than 4 years have no treatment other than those I have been able to source myself (I am a GP so have had better resources for obtaining medication than most). 

At this point I too am looking at travelling to see one of the US specialists.

Best wishes whatever you decide on. 

B x

[StayAtHomeMom]

There are medications to try that can help but I feel like without the underlying cause I am fighting an uphill battle. 

My specialist recommended water, salt (I always already doing because I craved it), beta blocker from my cardiologist (which did wonders for my tachycardia and heart palpitations), and my specialist added midodrine. I am pretty stable at this point. I have my good and bad days. My good days outweigh the bad now though. It has been 3 years and counting. I hope you feel better soon

 

[Potsie1990]

Hi love, I’m based in Los Angeles. I can refer a network of doctors that I recently discovered and an autonomic testing clinic! It’s at UCLA cardiac arrhythmia center in Westwood. It’s a bit far but, still close enough it might be worth it. Let me know if you would like them. 

[gummi]

i do not have dysautonomia--my mom does. but it has turned both of our lives upside down this year.

when she was first diagnosed in august (after 8 months of insanity) i immediately made an appointment at mayo in rochester. appointments are only done 12 weeks out. i was pleasantly surprised. she's going in mid-december.

as others have said, a good PCP is essential to implement whatever the true experts come up with. even if you know you have POTS or whatever, i think the clinics would be a good call. they offer further insight into your diagnosis and its background. they lay out the best path forward.

btw, if you haven't seen it yet, PBS and the mayo clinic. it's a 2 hour special that aired recently. it's wonderful. if you're going, it's essential viewing.

good luck!

[jvherenow]

Specialist, specialist, specialist! And then add an integrative MD. Getting the diagnosis from the specialist was key but the prescriptions weren't really working for me (I have a genetic variation in my CYP450 hepatic system so I am a poor metabolizer of like 60% of pharmaceuticals). Anyway, I've been seeing the integrative MD since April and I take supplements/prescriptions 5 times/day but I am waaaay better. I can work at least a half day almost every day and I almost never need my wheelchair. The integrative MD discovered all kinds of things that contribute to SOB like low zinc, low protein, low T3 (TSH was fine), mild anemia, MCV too high (indicating a low B12 level even though direct B12 mesaurement was fine), anaplasmosis (a tick-borne infection), etc. All the amazing folks at Brigham & Women's missed all of this! So, don't overlook the power of getting your nutritional stuff sorted out...a lot of us have malabsorption issues and need way more vitamins than typical folks. Good luck and let us know how it goes!

[JuliettOscar]

Thank you everyone! I'm definitely feeling a lot better about making an appointment with a specialist. I've wondered if I was really sick enough, or if they'd wonder why I was even there, like I was making a big deal out of nothing. While my symptoms are not debilitating (I can still do housework, walk, exercise, etc), it is exhausting and I do way less than I used to. Standing in the kitchen making a cup of coffee shouldn't get my HR up to 150bpm, walking up the stairs and standing still to do a bit of laundry shouldn't push it to 170bpm. I'm still doing active stand tests to see if there's a pattern (as far as I can tell, there is no pattern to my good/bad days). Yesterday after standing still for 5 minutes, my HR was over 140 and the BP monitor had given up after a reading of 73/57 at about 2 minutes in. And I can't figure out if I'm actually exhausted or if it's just the chest pain/pressure, air hunger & headaches that keep me slumped in a chair all day. And the brain fog is the worst! I dropped the classes & program I was starting at the college because I can't seem to focus on reading. I'm preaching to the choir here I'm sure! 

It seems half the time my symptoms are very POTSy without significant BP changes, and other times I most definitely have OH (even though my drop yesterday still wasn't a 20mmHg drop....91/54 lying flat to 73/57, its been worse the last few days because I haven't been keeping up on salt & water and I've eaten my weight in Halloween candy ). It would be nice to have some clarity and a general path to follow (besides "go exercise for 6 months"....I was already taking in 8g of salt & 2.5-3L of water when I saw the cardiologist). 

I've contacted a neurologist in Phoenix that I've seen recommended and I think I'll look into the autonomic testing offered at UCLA as well. Maybe Stanford in Palo Alto too! I'll go to whoever is willing to see me. I'm thankful I have a great PCP, we've already covered a lot including sorting out the nutritional deficiencies. I'll have to see how he does working with a specialist, I'm cautiously optimistic!

[bombsh3ll]

3 hours ago, JuliettOscar said:

Standing in the kitchen making a cup of coffee shouldn't get my HR up to 150bpm, walking up the stairs and standing still to do a bit of laundry shouldn't push it to 170bpm.

I'm glad you've got a plan. It isn't worth paying to see someone whose only suggestions are water salt & exercise. Like anyone who can use google isn't already doing all of that. Just one more thought - was that coffee decaf or for someone else? 

Coffee always had a strong diuretic effect for me and I haven't been able to tolerate caffeine at all (even black tea) since developing POTS, so it might be worth cutting out caffeinated drinks and seeing if that helps even a little bit, although on the other hand some people report getting a boost from caffeine. 

B x

[JuliettOscar]

Nope, that was regular coffee for me. I had considered giving it up, but I read that the caffeine can actually help as a vasoconstrictor. I don't think the diuretic effect is very strong for me, it makes me feel about the same as if I drank water. I do take a couple of electrolyte capsules first thing in the morning though, so maybe that helps.  

[jvherenow]

While you wait, you might try adding some electrolytes to your boatloads of water intake. I like the nuun hydration tablets (watermelon tastes best I think) and the Vitassium tabs. Also, take a methylated vitamin like Emeral Labs (https://smile.amazon.com/gp/product/B005LQ973E/ref=oh_aui_detailpage_o01_s00?ie=UTF8&psc=1) in case you have the MTHFR bad variant (like me). It shouldn't hurt and it might help. I really recommend seeing an integrative MD in addition to the specialists. I have had a dramatic improvement since starting with one six months ago. She has me on boatloads of supplements but I'm not complaining because I am so much better than when I started! Good luck!

[JuliettOscar]

Nuun tablets are great. I'm a fan of the strawberry lemonade & lemon lime. I also take RapidRehydr8, it's cheaper than Vitassium but has a similar sodium content (200mg sodium, 99mg potassium & 50mg magnesium per capsule). I also eat a lot of parmesan cheese - one oz of cheese has 480mg sodium and I can easily eat 3-4 oz in a day.

I'll look into an integrative MD. I'm already trying to find a family practice doctor. My PCP is an internist and I need someone to treat the whole family (we've been on a strep merry go round for a year now, and having NEVER had issues with strep in the past, I'm not ready to have the ENT slice the whole family up!). Unfortunately, Las Vegas is a medical desert, good docs are hard to find. 

[potsiebarbie]

On 10/30/2018 at 7:03 PM, Potsie1990 said:

Hi love, I’m based in Los Angeles. I can refer a network of doctors that I recently discovered and an autonomic testing clinic! It’s at UCLA cardiac arrhythmia center in Westwood. It’s a bit far but, still close enough it might be worth it. Let me know if you would like them. 

I'm in the L.A. area too! I'm having an awful time with doctors. I would love some names! 

[MeganMN]

@JuliettOscar  This is an older post, but I agree that you have to push for what is in YOUR best interest.  I have had generally good care, but the Inpatient doctors at the hospital immediately diagnosed POTS and then the first Cardiologist agreed, but the second Cardiologist that I went to for follow-up said it was more VVS even though my blood pressure has never, ever dropped.  He did get me sorted out with a Beta Blocker that works, but only after he tried to taper me off and then my heart rate went right back up to the 150-160's.  He then tried to say it was just a rebound effect from being off the Metoprolol, but regardless, he still agreed to get me an appointment with the Electro-physiologist from Minneapolis.  I think that in medicine, we have to advocate for ourselves, because no one else is going to!  Good luck with getting in to the right people!  Keep at it. 

[Potsie1990]

On 12/22/2018 at 3:37 PM, potsiebarbie said:

I'm in the L.A. area too! I'm having an awful time with doctors. I would love some names! 

Please message me, and I’ll give you my list!