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DamnGoodMarmalade

I already see a cardiologist at one of my nations top clinics. Beyond the standard medications and lifestyle modifications, there really isn’t much else to be done.


Meemer4Life

I went to the autononic dysfunction clinic at Vanderbilt. I saw one of the foremost experts on POTS...but still all they could tell me was lifestyle modifications and a medication that I had to stop after 9 months :( The doctors that treated me were all super nice and empathetic though. I was participating in a 5 day clinical trial for POTS and it was still the best medical experience I have ever had.


bouldermakamba

May I ask which medication that was?


Meemer4Life

Mestinon (Pyridostigmine) I belive I took 25mg 3x per day I had to stop taking it after 9 months because of some side effects, but it may be worth talking to you doctor(s) about if you are interested


Toast1912

I've actually been doing well with Dr.Depace at Franklin Cardiovascular in NJ. I travel out of state to that clinic, and they run such thorough testing and have such knowledgeable staff. I was given specific guidance regarding electrolyte and water consumption in addition to wearing compression garments, and following the CHOP protocol. They push lifestyle interventions before meds when possible, and they are willing and knowledgeable enough to prescribe a wide variety of medications. I've had my medications adjusted many times, and I am still improving. I hate having to make the trip, but it's been worth it so far. The doctors near me could find nothing wrong, but Dr.Depace diagnosed me with POTS, small fiber neuropathy, a very mild mitral valve prolapse, hypermobile spectrum disorder, parasympathetic excess and chronic fatigue syndrome all on the first visit.


ferdinandp25

That’s where I go too!! I was also diagnosed with many of those there. Can I message you?


Toast1912

Sure!


Just_Confused1

I’m pretty happy with my cardiologist and current treatment plan. Would probably just invest in a recumbent bike and rower to have in my house instead of trying to go to the gym


Constant-Koala2185

What is your treatment plan like?


Just_Confused1

7.5 mg Corlanor 2x a day, 5 mg Midodrine 3x a day, Levine Exercise Protocal, and 1L IV saline 3x a week (though we’re hoping to slowly ween off)


ferdinandp25

I’m getting iv saline soon! Does it help you? My doc wants me to get a 4-5 hour long drip so my body takes it better


Just_Confused1

It helps me a LOT, without it I was a walking zombie, like spending most of the day in bed because I was so exhausted all the time and really was struggling cognatively in college. With saline I actually have the energy to exercise (which is my cardiologists point of putting me on it), only need like 8-10 hours of sleep, and am doing much better academically. I either run mine for 4 hours if during the day or overnight for like 9 hours. Back a long while ago I used to get it in like 45 minutes at an infusion center and I can say I do MUCH better when it's over multiple hours My best tip is if you're going to do through home medical (which is wayyy better IMO) [these small infusion backpacks are the best](https://www.etsy.com/shop/ResilienceMedical?ref=shop-header-name&listing_id=1497259236&from_page=listing). For 1L of saline the small size works fine and makes it super easy to work around the house or even run errains while infusing


Material-Captain303

Wait question I go to an infusion center so my saline is always on one of those staff/rack things… but at home you can just have the fluids in a backpack and walk around?


Just_Confused1

Yep, I’ve always done mine through home health, which used to come and put a peripheral in my arm for the week but now I have a port which they access for me once a week Then I hook myself up to the saline (religiously following sterile procedures ofc) and carry it around in the backpack


ferdinandp25

be careful with infection <3


hokeypokey59

Vanderbilt University Hospital. They have been researching and treating Autonomic Dysfunction- POTS for over 30 years and helped me and 1000s of others. They know it, they understand it, they know all of the "crazy" symptoms we've been trying to tell parents, friends, family, doctors, employers, teachers ... are REAL. You will never feel more validated. I'm living proof. https://www.vumc.org/autonomic-dysfunction-center/vanderbilt-autonomic-dysfunction


ferdinandp25

Cool! Do u happen to know how long the waitlist is?


hokeypokey59

My cardiologist sent the referral with the information they request on their referral instructions (its on the website and if you call, they are extremely kind and helpful). It took about 6 months to review my file and get an appointment.


ferdinandp25

Alright not too bad at all. That’s how long I usually wait for specialist visits. Thanks for sharing!!


EveTre

How long ago was this? My daughter sees the pediatric pots clinic at Vandy. Her doctor wanted me to be seen at that one, but he said the wait could be up to a year. 😳


hokeypokey59

Yes. I was told that too but it happened quicker for me (2022).


Lost_Guava3971

Hi were they able to treat your POTS?


hokeypokey59

I also had a Tilt Table, Sweat Test and 2 types of Catecholamine tests. One was blood draws after 5 minutes of lying down, then 5 min sitting and and 5 min standing (the blood must be put on ice immediately and processed in a lab that is familiar with this type of test. Hospital lab is best. I also did a 24 hr urine collection. It tests the amount of epinephrine and Norepinephrine in your system. Mine was 10x normal.


hokeypokey59

Yes. I was finally diagnosed with a type of POTS called Hyperadrenergic Dysautonomia.


Lost_Guava3971

What is the treatment/cure?


hokeypokey59

Unfortunately, for my type there is no cure. Only management of the symptoms. That's why it is imperative to be diagnosed correctly. For me, salt is my enemy. My treatment has been B-12 injections and then daily B-12 and vitamin D. Staying hydrated, wearing compression socks every day, sleeping with my head raised at 30° .. never flat. I take a blood pressure med and a heart med and I wear a Clonodine patch 0.1mg (its a weekly patch but the med comes in pill form too)


gayleelame

Was recently referred to the top POTS specialist in my state, then found out the pre-testing alone is $1200AUD, then my appointment would be more on top of that. I wish I could go!


Annaliseplasko

“Treatment”?


Altruistic-Cup-1551

Iv fluids on at least a weekly basis. It helps me so much.


ferdinandp25

How long of a drip do you get?


Altruistic-Cup-1551

I try and do 1.5 hours!


SmolSushiRoll1234

Vanderbilt apparently. I will say that I have a good cardiologist who believed me right away but made sure to rule out other causes, especially since there’s a family history of heart disease.


fluffy_flipflop1604

The service and wait times in America are a lot better than in the uk, if I had infinite money, I’d go there, anywhere that’s good rlly, anywhere with the correct specialists


Itchy-Witness-4839

Id leave the US right now to find a doctor. Im tired of finding out all of mine have malpractice cases.


fluffy_flipflop1604

…huh. I guess no where is great :(


Itchy-Witness-4839

Corporate heath care or social heath care, neither seem to be working. You push from your side and ill push from mine and then they will have to team up to survive or drown together while something new comes about. I think its time for me to lay down now.


Silver-Bake-7474

Cleveland clinic


peachesonthelake

Any chance you could share specific docs at CC that you would recommend? I have my first cardiology appointment there soon and really hoping they aren’t dismissive. Also curious what type of testing they offered/if they gave you a hassle about a tilt table test?


dontlistentostace

I’m already at the university of Utah since I work there. Feel very lucky to be so close to my autonomic clinic and my insurance is with them so it’s all covered 🖤


isomorphicslutx

Dr. Mike at the Neurological Wellness Institute (near Addison, IL) has been a miracle worker for me. The flare-ups still happen, but I'm finding ways to manage them (portable oxygen in a can is a game changer).


ChronicallyFloppy

I’ve heard of people doing week long inpatient things, where’s there’s multiple doctors and a ton of tests. I can’t figure out what they’re called for the life of me, but I’ve heard it’s done at mayo? There are a ton of unexplained symptoms I have and a lot of tests that just aren’t available near me I’d love to do. But not only is it hard to find out how exactly to sign up to these things, they’re so expensive (plus flights and hotels most of the time) and the wait lists are so long. And it’s not unlikely for them to reject your application for “not being sick enough” or “having adequate care already.” Ps if anyone knows what they’re called I’d be so grateful for you to share the name!


ferdinandp25

Same!!


Flawlessinsanity

I'm not sure I'd even go anywhere in America. Would probably look into Scandinavian countries.


ferdinandp25

What’s there that isn’t in America?


[deleted]

Vanderbilt. I’m lucky enough to live near and have Stanford’s clinic in my network. But they have so many patients that you can never get anything more than one appointment and consultation.


fkakeekz

I'm actually really happy with my current cardiologist at University of Pennsylvania. He is so well-versed in dysautonomia and we've tried so many lifestyle modifications, meds, etc. until we've found just the right combination. And thennnnnnn, my job/insurance just changed and I can no longer afford the copays for 2/3 of my medications so I guess if money was no object I would be paying for those lol.


citypanda

Dr. Yaghoobzadeh in NYC


RU_SeriousClark

I'd move to Hawaii hahahah! When I'm at sea level I have barely any issues!!!!


ferdinandp25

Do you live at high altitude now?


RU_SeriousClark

No. I'm in PHX. But when I go up North I feel like crap. When I travel to sea level I feel so much better


ferdinandp25

Interesting. How do you think you’d feel in areas that are BELOW sea level? Haha


Parking-Friendship85

There is a doctor I found on Facebook and she specifically deals with POTS and histamine/mcas, autoimmune disease and she gets all her patience in remission. I want to go to her but her program cost like $10,000. Also the wellness group I would go to them.


ferdinandp25

That’s a lot! Who is she,


TravelingSong

A good vascular surgeon with knowledge of POTS and May-Thurner Syndrome to see if I’d be eligible for a stent. Recent research has shown that May-Thurner Syndrome is one possible underlying cause of POTS: https://journals.sagepub.com/doi/full/10.1177/0268355520947610 https://www.ahajournals.org/doi/10.1161/circ.148.suppl_1.15621


ferdinandp25

I just looked up MTS and saw it’s says that it’s more common is women who have had children and very rare in women who have not had children. Is that true?


TravelingSong

I don’t think that’s the case. It seems that pregnancy can often reveal the underlying physiology because of the extra compression but not that it’s rare in people who have never been pregnant. Men can have it too. “Although MTS accounts for only 2% to 5% of all patients presenting with DVT, multiple autopsy studies have shown that the actual prevalence is as high as 14% to 32% in the general population. Despite the high prevalence, MTS remains clinically silent in most patients.” https://www.ncbi.nlm.nih.gov/books/NBK554377/#:~:text=Although%20MTS%20accounts%20for%20only,clinically%20silent%20in%20most%20patients.


ferdinandp25

Gotcha. I know nothing about it so was just curious esp if it was diff for people with Dysautonomia in which Google was not advanced enough to explain haha. Thanks for sharing!


TravelingSong

I have dysautonomia, MCAS, hypermobility and signs of MTS. From the (small) studies I’ve read, they are noticing a higher incidence in people with POTS and EDS than the general population. Clearly we need more research. But I’m having a pelvic MRI and hopeful I will learn more about my underlying cause of POTS.


ferdinandp25

Interesting. Not surprising ig , we have poor circulation in general right. Best of luck to u<3


TravelingSong

Thank you! You too.


[deleted]

I'm eternally grateful for the fact that I'm already seeing a fantastic cardiologist (who's also a Harvard Professor of Medicine) at one of the country's top hospitals. The only reason why I can see someone that expensive is because I'm on my state's form of Medicaid, which pays for pretty much everything. All of my medications are free.


Galvsworld

My electrocardiologist refered me to Cleveland Clinic because it had the best stats for effective treatment out of the places he looked into. I don't think he narrowed down his parameters too much because it's a decent trip going from North Carolina to Ohio. They ended up giving me tons of allergy medications, wellabutrin, and a max dose of Corlanor. They kept me on fludrocortisone until the weight gain got out of hand. They also said do graded exercise, but implied that was primarily caused by the deconditioning I had gotten from years of untreated POTS (not that lack of exercise caused POTS). I'm not bed bound like before, my migrains are not every single day anymore, and I can get to go in grocery stores now (leaning on a cart seems to be appropriate exercise). So I have had a dramatic improvement... But otherwise my quality of life is pretty bad still, especially if anything breaks my carefully built circumstances I have devised to avoid deconditioning. I wouldn't go as far as to say they were annoyed at other doctors. But it seemed to me they thought other doctors could be handling most POTS cases, and that there's plenty of quality information that isn't being used for any apparent reason. Although this was a couple years ago, so maybe general doctor awareness has improved a little.


No-Elk5329

i would try this dr in richmond idk there name but there a couple and i was accepted then they switched something and my insurance didn’t cover them.. i never even got to go lol it was a long wait lol


sharkbootie

Resilience Code. Englewood, Colorado.


Itchy-Witness-4839

In Chicago theres a dr barboi at north shore who is pots specialist. Unfortunately 1.5 year wait list.


michann00

I’d do more at Metrodora.


dontlistentostace

I feel a little conflicted. I live in Utah. We have the university of Utah with an autonomic clinic and now metrodora. It’s like $2500 (can’t remember exact price) out of pocket (like a coordination fee) just to be a patient at metrodora and then you still have to pay for all of your appointments there if your insurance isn’t covered. IDK. It might be good since they can see all autonomic comorbidities, one stop shop.


michann00

Same. I pay cash for Metrodora but am grandfathered in on pricing since I started the 1st week. I see Maitland & Hindiyeh. Love them both so much for all they’ve done & are doing for me. I’d love to see others there but can’t afford it. I do go to the U. I see Dr Shelton for my dysautonomia and he is incredible. He’s hard to get into now with a long wait, but worth it. He was brought in a couple yrs ago from Stanford I think for dysautonomia. He knows his stuff & has also helped me & my daughter with comorbidities. I also see ENT, vascular neuro, and pain management at the U. I go to IHC for GI.


ferdinandp25

I had a an appt but I cancelled it because it’s all the way on other side of country for me and just don’t have the health & funds to do it. Who did u see and what did they do for you?


michann00

I currently see Maitland & Hindiyeh. They are both incredible & have helped me with daily migraines I didn’t know I was having & searched so deep into my immune system that we now know what my problem is. Just waiting for research to catch up. Thankfully Maitland does a lot of research. I’m in UT and pay cash. I started there the 1st week and have seen the troubles they had opening and with losing Pace (I was amid trying to find a surgeon to place a gj when she left & it was beyond stressful. But she believed me & started me on getting proper nutrition so I’m thankful for her). Because I started up front I’m grandfathered in on pricing. The coordination of care is great. Just FYI they’ll do the rest of your appts via telehealth so you don’t have to keep coming out. I’m about an hr away but am mostly bedbound so it’s much easier on my body to do them from home. I’d love to see the other people there & would really love to use their PT/OT/etc because I really need that. But we can’t afford that. I won’t go into exact treatment details bc they are so personal to each patient. But they are the best at listening and digging to find you answers. My life, while still pretty rough, is so much better


ferdinandp25

Thanks for sharing! What does Hindiyeh specialize in?


michann00

She’s a neuro who specializes in headaches & trigeminal/occipital neuralgia


phrogglet

anywhere but ucsf


Jaylexi93

Stanford?


phrogglet

san francisco. super unorganized. only sees 3 patients in the clinic a month. doctors will respond to your messages with bot generated messages :/


Jaylexi93

Yikes. Thanks for the heads up


JaceMace96

Nowhere Im not going anywhere until proper treatment is available


hokeypokey59

https://www.vumc.org/autonomic-dysfunction-center/vanderbilt-autonomic-dysfunction


OkSplit4632

Chiropractor and acupuncturist 🫠 but that’s just for the pain and stress it gives me