Need Advice From Vt

[RHODEO]

Hi. I have some questions. I am 31 and I think I have POTS. I haven't been diagnosed (long story) BUT I have been feeling like crap for a year longer actually and I feel so depressed.

To make a long story short, they don't do TTT here in VT. Very incompetent. I have been bounced around from docs and meds. I have been diagnosed having syncope, PAC's, PVC's, SVT's, IST's, small fiber neuropathy, IBS, GERD, Fibromyalgia, incomplete badder emptying, fasciculations, low b pressure, neuritis in ear, vascular constriction, Raynauds, polyp on gallbladder, migraines, fibroids, arthritis, and more.

I feel like my docs are not helping.

I am feeling very lonely and scared.

Docs have given me so many drugs and I haven't taken any.

Should I try Prednisone? Zofran? Florinef? Hydroychloroquine? Valium? SSRI's? Pain med?

Thanks.

[Priscilla Gilman]

Hi. I am in VT too. There are not a lot of options here, and I have started seeing a neuro in Massachusettes. But I did have a TTT at Dartmouth Hitchcock years ago and that may be a place for you to start. I have a cardio at DHMC. He is lovely and has helped me, but he doesn't actually know that much about this stuff. I can give you his name if you want. I believe there is someone else on the forum who sees a neuro at Dartmouth; so that might be an option too. To really get someone who knows dysautonomia stuff you will have to go to Mass. or NY.

best,

Priscilla

[runningshoe]

Have you been to the hospital associated with Dartmouth? Can you come to Boston for some treatment?

Hang in there!

[RHODEO]

I'd love to come to Bo! I lived there for 7 years while I studied in college. I am desperate for help. I need a neurologist who understands POTS. I have said POTS to docs here in VT and I receive looks like I am crazy. I don't think they have ever heard about anyone having it. It is very strange. I guess because I live in a small state the medical care is not as up to speed?

Can you give me recommendations on who I should call?

Thanks so much.

I really feel lonely.

I haven't been able to work in 7 mo's. I am in bad shape. I am not sure if I should take meds they give me.

[Rachel]

You can check the physicians list on the main DINET site. There is a doctor listed who is in the state of Vermont. You might also find a doctor in a nearby state who could treat you.

I went to Johns Hopkins back in the 90s and I saw Dr. Robert Shapiro. He was very kind, knowledgeable, and thorough. He is now at the University of Vermont College of Medicine. He specializes in migraines and autonomic dysfunction. Here's a link to his bio if you're interested. Dr. Shapiro

All the best,

Rachel

[dsdmom]

I see a neuro at UMASS Worcester who knows all about this stuff - Dr. Peter Novak. I know others on here see Dr. Freeman at Beth Israel in Boston. Dr. Novak may be easier to get in with than Dr. Freeman since he only recently moved his practice to Worcester so is building it back up (he used to be at Boston Medical Center). But they'd both be worth looking into for sure.

[ajw4790]

Hi,

I know that some areas may be harder than others to find a good dr. close by. But, a good (or great dr ) a little further away is better than a not very helpful dr.

I hope that with some of the suggestions of others and the DINET list of physicians you can find a dr. reasonably close to you to help you out.

I would say work to find some good drs. that listen and are on your side and weed out those that are not helping things. But, definitly make sure you are under good dr. supervision, especially if on any meds.

I would think that somewhere they would do TTT, but if they don't then maybe just go a little further out. Also, the TTT isn't everything, many drs. even say it can be a waste of time, especially if they already know it will be positive.

For the PAC's and PVC's- how many and how frequent? Just a few (not abnormal) or many?

Are you under the care of an electophysiologist? (cardiologist)

How are your drs. not helping? As in not listening or believing, or not having found the right treatment?

You said drs. have given you meds, but you haven't taken any. So, I understand through my fog ... Did the prescribe all the meds you listed on your original post? You haven't tried any of them yet? Or they didn't work?

If you haven't tried them, is it because you feel you are misdiagnosed or are uncomfortable taking the meds? (or something else?)

Currently what are the major symptoms that you experience?

Are you taking any meds?

What testing have you had done? Are you just looking for a neurologist or other drs as well?

Also, it may help to look over the DINET website to see more info on what works for some people and why it may help. Also, reviewing old posts on the board may be helpful to learn more about peoples experience with meds or symptoms like yours by using the search engine at the bottom of the forum's web page.

Many can be helped by the right medications, so try and not dismiss it as an option if you have it suggested to you by a helpful dr. that knows about what you are experiencing.

If you do have all those meds and are not currently taking them, DO NOT (please!) start taking them without discussing it with a dr. that is familiar with you. Also, make sure that you don't start or try to many things at once.

It is a VERY slow process!!!

I hope that helps at least somewhat! Welcome! I hope you find help soon!!!

[Priscilla Gilman]

A while back I looked into Dr. Shapiro at UVM and I think he is only doing headaches now. Boo hoo, he looked great.

(Rachel wrote: "I went to Johns Hopkins back in the 90s and I saw Dr. Robert Shapiro. He was very kind, knowledgeable, and thorough. He is now at the University of Vermont College of Medicine. He specializes in migraines and autonomic dysfunction.")

[RHODEO]

Thanks for your responses

To answer AJW4055,

For the PAC's and PVC's- how many and how frequent?

The PVC's and PAC's happen several times everyday.

Are you under the care of an erlectophysiologist? (cardiologist)

Yes. He said TTT's are unnecessary and should never be given. :/ Argh. This is not correct.

How are your drs. not helping? As in not listening or believing, or not having found the right treatment?

They have never heard about POTS.

Did the prescribe all the meds you listed on your original post? You haven't tried any of them yet? Or they didn't work?

Yes. They prescribed those meds and I haven't taken them since I don't trust my docs. They have never heard about POTS.

Currently what are the major symptoms that you experience?

Nausea, Arrhythmia's, Tachycardia on standing, Stomach sensitivities, Acid reflu, Syncope, Lo b pressure, Muscle pain, Fasciculations, Fatigue, Dizziness, Lightheadedness, Incontinence, Unable to tolerate hot and cold, Pain, Arthritis, Ringing in ears, and much more.

Are you taking any meds?

Not currently

What testing have you had done? Are you just looking for a neurologist or other drs as well?

I have had an EMG and NCS, colonoscopy, Echo, EKG. Hlter monitors, ENG, Brain MRI, Utrasound upper right quadrant, labs, Stress tst,.

I am looking for a doc team. Docs understanding autonomic problems.

Thanks again. If you have any advice I'd be happy to hear.

[RHODEO]

Has anyone ever tried Pindolol?

[RHODEO]

Does anyone have recommendations on a SSRI?

[Tammy]

Hi! Yes, I've tried Pindolol and also SSRI's... Um, took a few years but found Atenolol to work best for me and I need to avoid SSRI's. We are all so different in what works and what doesn't. After years of learning, when you do decide on a med to try, start off on a lower dose than what your doctor is giving you, split or even quarter the dosage down and slowly work your way up over weeks time, this is the only way I've found I can give any new med a try, otherwise I can't tolerate anything. Hope you find some meds that work to help control your symptoms a bit.