Doctor in Sacramento/San Francisco area for PoTS

[Abarber90]

Hi, 

I’m new here but I was hoping maybe to get some recommendations. I was unofficially (the doctors in the ER here aren’t allowed to make diagnosis but she told me to find a doctor that knew what it was and to get tested for it) diagnosed with PoTS.

I am not sure much about it just what I’ve found on google and my general doctor said that he will not test me for it. I’ve had several hospital visits over “bouncing heart rate” (my words to describe it lol) and syncope. While in the ER I generally receive 3-4 bags of IV fluids and then I’m better but my heart rate never drops below 110. However when this happens and I don’t go in it lasts days sometimes. It jumps within 30 seconds as soon as I stand or sit upright. However it drops low if I sit or fall. I’ve also had several ekg and holter monitor tests that show tachycardia but was told they didn’t see anything they could do. 

I should note I wear a heart rate monitor because I’ve had so many problems with syncope and heart rate. Last fall I got an Apple Watch (not the most accurate I know) and started to notice that my heart rate directly affected my syncope episodes so I try to keep an eye on it if I start to feel off. 

Currently upon waking my heart rate is 140-150 and I cannot stand for around an hour or I will fall because it jumps from there and I get dizzy and my legs just go to jello. But it doesn’t stay high at a constant it sort of bounces down around 65-75 range and sometimes lower. But it bounces around like this for about an hour when I wake up now. Usually it only happens later in the day. 

I’m really sorry for writing such a rambling long message I guess I was also hoping someone who has actually been diagnosed could tell me if this is even similar to what the symptoms are. I know that ER doctors have medical degrees I guess I just am not sure if I’m going to waste my time as well as another doctors trying to diagnose a disease that I don’t actually have. 

Thanks for reading my book and thank you for any information you may decide to share. 

[Shannoncr]

not sure how far you are from Palo Alto but Stanford university has an autonomic disorders clinic. 

https://stanfordhealthcare.org/medical-clinics/autonomic-disorders-program.html

[Pistol]

Why will your genera; doc not test you for it - is it because he does not how to diagnose it or because he does not believe you have it? The symptoms you describe sound exactly like some sort of dysautonomia with orthostatic intolerance, most likely POTS. @Shannoncr has a very good suggestion. Even if you have to travel - I need to travel 8 hours one way to my autonomic specialist - it is absolutely worth it, even if they do not think you have POTS. Apparently you currently do not have docs that can recognize or treat dysautonomia. Please seek specialist care as soon as it can be arranged ( they always have long waiting lists. 

[Abarber90]

@Shannoncr thank you I am willing to drive there I had seen that but on their website it says referral only. So I have to find a general doc willing to write a referral. But I so appreciate the suggestion.

@Pistol he does not believe that my symptoms warrant further testing. He told me I should possibly see a therapist. I’m currently trying to find a new doctor I have two different insurances so I have a wide range of options I’m just afraid of being marked as some sort of attention seeker or something if I see too many doctors. I don’t know if that’s even a thing but I had started to doubt that anything was even really happening until the ER doctor told me to get checked. Unfortunately they aren’t allowed to make referrals to anyone but my general doctor and they can make suggestions (which she did but it wasn’t received well.) 

[DizzyGirls]

Hi there!  Welcome to DINET!  We live in the SF Bay Area and go to Stanford's Autonomic Clinic.  We saw Dr. Jaradeh there.  He's fantastic for diagnosing as he's willing to actually make a diagnosis, follow up is a little challenging, can be done, though.  BUT, it's really, really important to have the diagnosis, especially from a place like Stanford.  So, that being said, yes, you do have to have a fantastic referral and the wait is long.  We have had doctors look at us and say 'you have Ehlers Danlos? It's really rare, and POTS, too?  Who diagnosed you?"  Then I can say "Stanford" (and you say it with a little, "how dare you question their diagnosis!").   My suggestion would be to find a cardiologist that would be willing to assess your symptoms and do as much as they could locally, then, send you that referral to the Autonomic Clinic.  A neurologist, too, would work.  Are you anywhere near Fairfield?  If so, there is a great neurologist named Dr. Ameer Almullahassani.  He is so nice, but good, too.  He sent a referral for my daughter to get in to her neurosurgeon at LPCH.  Normally I hear it takes months to get in to him, but she got in in two weeks!  I don't know what was on that referral, but it must have been good!  You can PM me if you want more information or suggestions!  Until you can get someone to listen, make sure you stay well hydrated and lots of salt.  Hang in there!