Doctors In The Ny Area, And Octreotide.

[username]

I was wondering if anyone here has positive experience with any pots knowledgeable doctors in the NY area? I'm frustrated with the lack of help (and interest) from the local cardiologists and neurologists I've been seeing in long island. There are a number of pots specialists in NYC listed on this site, but I've heard negative things about a couple of them, and I'm afraid of wasting a lot of time seeing another unhelpful doctor just randomly picking a name, especially since getting to and from the city will be difficult for me.

Julian Stewart seems like the most knowledgeable person in the area, but as far as I know he only treats children and young adults (I'm in my mid twenties). Nevertheless I've tried to contact him to see if he'd see me, or at least recommend another doctor if he wouldn't, but he hasn't responded to my phone calls or emails.

People seem to like Svetlana Blitshteyn, but she's on the other side of the state, and getting there isn't very realistic for me. I know she also does some kind of phone consult service, have people gotten their insurance to cover that?

And lastly, has anyone been prescribed octreotide in the NY area? From what I understand this medication has been extremely helpful to some pots people (more so those with abdominal pooling like I have?), but it seems not many pots specialists prescribe it (or know about it?).

Thank you for any information. If there's anything you'd like to say but don't want to post publicly please PM me.

[castronovo112587]

Hello I am not in the NY area but have taken octreotide before but for carcinoid. It helps with diarrhea and flushing. Do not believe it would do anything for tachycardia or blood pressure but it should help abdominal issues. From my understanding it's a relatively safe medicine and the best place to go to see about taking it would be some sort of dysautonomia specialist or an oncologist/hematologist. Maybe have your current doctor write a referral to a oncologist? As they often prescribe octreotide for cancer patients.

[username]

My understanding was that octreotide can increase blood pressure in people with abdominal pooling. From here: http://www.dinet.org/what_helps.htm

Octreotide is especially useful in preventing vasodilation in the gut, thereby reducing splanchnic pooling. Its actions help to prevent postprandial hypotension (low blood pressure after meals). Octreotide inhibits the release of a variety of gastrointestinal peptides and also may reduce postural and exercise induced hypotension (Mathias, 2003). Octreotide does not often appear to enhance supine nocturnal hypertension, however one study reports that it is a possible side effect (Hoeldtke, Bryner, Hoeldtke & Hobbs, 2007).

And I've seen a fare amount of positive feedback about it around these forums.

I absolutely have abdominal pooling, and my symptoms after eating are the same as when standing for a long period of time. And like some others around here, I have some bizarre issue with insulin resistance. Despite being underweight, and eating a low carbohydrate diet, my insulin levels just go up and up and up unless I stay on metformin(which I have plenty of side-effects from). Octreotide also suppresses insulin and increases increases insulin sensitivity, so I figured it could help me on both fronts.

Anyway, I got in touch with Dr. Stewarts office but they won't see me. I tried Mark Pecker next, but he doesn't take my insurance, althou referred me to a Horacio Kaufmann at NYU Lagone. Has anyone seen him before?

[SarahA33]

username,

I'm from upstate so I don't have much help with suggestions doctor wise other than I think there is Dr. Kaufmann at NYU I've read about.

Octreotide does raise your BP. I was given it when I went through neuroendocrine and they watched me like a hawk. (I have high BP). I didn't feel any relief during it but it was only injected twice.

Good luck with your search, sorry i couldnt have been of more help.

Sarah

[corina]

Octreotide is my best friend It's the treatment that works best for me. As it doesn't work on standing hr for me, I combine it with Paxil which does. Although my dysautonomia is acting up after having surgery in July, I'm sure I would be much worse of without the octreotide. Good luck on your appointment!

[castronovo112587]

Yeah I haven't researched it as much from a pots stand point but know it helps with diarrhea and flushing from the carcinoid standpoint. It didn't do anything to lower my heartrate and didn't affect my blood pressure at all either way. Like SarahA33 they use it alot when trying to detect and treat neuroendocrine tumors, which is what carcinoid is. Hope you get in touch with a doctor that can try it out for you.

[SarahA33]

username,

I just remembered something...... These cognitive delay's. Aye-yi-yi!

A while back I wanted to get into a clinical trial @ Vanderbilt but didn't meet the criteria. The Clinical Trial Coordinator, did offer the option of making an appointment for a consultation at a Sattelite Location in NYC. I know you expressed travel into the city is difficult, but i just wanted to mention it to you.

I had these 2 #'s written down in my notebook, 615 322 3000 and 615 343 6862

Any updates yet?

Best of luck,

Sarah

[username]

I called to make an appointment with Kaufmann last week, but they wanted my records and a letter from my doctor beforehand, waiting on that now.

[username]

Finally had someone call me back from doctor Kaufmanns office, just to tell me they won't see me because they don't think I have neurodegenerative or genetic pots (how they could even tell that before I'd even talked to them, let alone have any real testing done, I have no idea). The person I talked to recommended that I follow up my primary care doctor (who doesn't know anything about autonomic issues) and local cardiologists (which have been wholly unhelpful).

I really don't know what to do, I think I ran out of doctors to even try calling...

[username]

I found one more doctor on the list that takes my insurance, Louis H Weimer's, but his office won't talk to me without a referral for autonomic testing from another neurologist. The last two local neurologists I've seen were clueless about autonomic issues and just told me to see a cardiologist (which I already had of coarse...). I'm really at a loss of what to do at all.

[corina]

Would it be possible for you to contact your last neuro and ask him for a referral to the dr you mentioned? I'm sorry it's so difficult for you to find a physician to work with.

[Gemma]

Hi username. I am a patient of Dr. Weimer. I live in philadelphia but see him because not many docs here who deal with POTS.

Let me know if you were able to see him and how was the appointment.

[amyksmith]

I used to live in NYC and now live 2.5 hours north of the city, but in NY. My experience in NYC was that the only doctors working in POTS were more research-oriented than clinically oriented. As you mentioned with Dr Kaufmann (and there are two others I know of), they take patients with specific symptom sets or known causes of their POTS and only those types of patients. That's super frustrating for anyone who doesn't fit into one of their categories.

I saw Dr. Weimer solely for testing - ie, not as an on-going patient. I was sent to him by another neurologist who was theoretically treating me. Oddly, I ended up mis-diagnosed in spite of Dr. Weimer's specialty and his doing my autonomic testing, but I don't blame him in any way. I don't only have POTS; I have other systems affected by autonomic dysfunction so it's complicated.

I can highly recommed a cardiologist who is in New Jersey though -- if that helps. I used to take the train and a taxi out to see him when I lived in NYC (or bribe a friend to drive me when possible). He's listed here on DINET - Dr. Nicholas Tullo in West Orange definitely helped me with my POTS symptoms a lot. But I only knew to seek him out (and found him on this list) after I'd been diagnosed at the Mayo Clinic. Dr. Tullo is well worth the trip to Jersey if you're in need of a cardiologist who is very familiar with and treats a lot of POTS patients. Good luck.

[username]

I did end up seeing Dr. Weimer, (the only 'pots doctor' I could find inside the state that would see me), but he wasn't helpful in my case. The 'autonomic testing laboratory' he runs at Columbia was just a tilt table in a small room, nothing I hadn't already had done by local cardiologists. He put me on a variety of medications including midodrine, mestinon, a laundry list of beta blockers, and clonazepam, but none helped any of my symptoms, some just made them worse. I thought the beta-blockers would at least help with the anxiety side of things, but no.

I asked him about octreotide at a visit, since it seems to be the only medication helpful for abdominal pooling/postprandial symptoms, and he agreed to try it if the last couple of beta-blockers and clonazepam didn't help, but later changed his mind and told me he'd never actually prescribed octreotide before, didn't want to deal with it since it's only available as an injection, and to see a gastroenterologist or endocrinologist instead. Which is what I've been trying to do since with no progress.

I have medicaid now (don't have a choice), and very few doctors out here are willing to accept it, even the gastro/endos I've been to in the past won't see me anymore (despite being listed as taking medicaid). The ones I managed talk to so far wanted nothing to do with treating me for autonomic problems (that they know little to nothing about) with an offlabel medication. I called Dr. Weimers office, frustrated with the situation, but the answer from his staff was that Weimer wasn't going to prescribe it, and it 'probably wouldn't help anyway'.

Making appointments with random non-local endos/gastros, waiting months to see them, and simply hoping they'll be willing to prescribe octreotide is a crap shoot of the highest caliber. I mean, I'm basically going to these people and saying "Hey, I have an obscure presentation of an obscure disease outside of your specialty, want to prescribe me an offlabel, incredibly expensive, injectable medication for it? Here's my recommendation from a neurologist that doesn't even think it will work." It's completely absurd... and I have no idea how to proceed. I'm 27 already, and the only thing I've really done with my life in the past 9 years is wait for fruitless doctors appointments.

Sorry for the rant, and thanks to the above posters on the information about Dr. Tullo, I'll look into it and give them a call tomorrow. His office being named the "NJ Center for Fainting" when I don't actually faint kind of scares me thou lol.

[Tia Koul]

HI.. I am just reading your post. I don't know about your financial situation, and I know it gets costly. But here are 2 idea's. Dr. Richard Mueller in nyc is amazing. He is a cardiologist but will prescribe and be compassionate and try to help. I hated dr. Kaufman.. he was the first one I saw probably 10 years ago. My internist was Dr. Leo Galland, who is out of network and very expensive, but if he hasn't retired yet, I would go see him. THe guy is a genius. I'm sorry you are struggling so much. Don't give up!!! And if you can, see Dr. Mueller, he is a great guy. The office is a bit disorganized and they always run late, so say that you are coming in from the Island You never know. Good luck! Maybe don't pin your hopes on one medicine. You probably need some way more thorough blood work before anyone can know what to give you. Really, if you can save up, go see Dr. Galland. Hang in there!!