corina

Though I fully understand your hesitance re anxiety meds, I'd like to let you know they are on our "what helps"-list, here's a link for you to check out:

Selective Serotonin Reuptake Inhibitors (SSRI's) are sometimes used to treat those with autonomic disorders. SSRI's are used because serotonin is the principal neurotransmitter that the brain uses to govern autonomic control, in particular to govern blood pressure (Haran, 2004). Studies have shown that some patients with autonomic disorders may have disturbances in central serotonin production and regulation (Grubb & Karas, 1998). SSRI treatment can suppress the sympathetic nervous system (Shores, Pascualy, Lewis, Flatness & Veith, 2001). Venlafaxine is particularly effective, possibly due to its actions on norepinephrine as well as serotonin. It has been reported that SSRI's may be effective in treating the chest pain that is associated with dysautonomia (Low, 2000). However, the FDA has issued a public health advisory regarding antidepressants, and they should be used with caution.

I've been on them for years now and though I tried to get off several times, my body just can't do without them. They are my nr 1 med to keep hr in control. Good luck on your journey

Alarm clocks set my dys of too. I now have a wake up light which is SO much better. It comes with a tune you can choose yourself (piano, bird song etc) at your own chosen volume. I really love it!

Hi new members, welcome around!

Hi Melinda, welcome to DINET! I can't help answering your question re doctors as I'm not in the USA, just wanted to say hi!

Wow, welcome everyone! Glad you found us!

Hi DB, welcome to DINET! I use compression hose, drink salted water and wear an abdominal binder while flying, they help me get through! Enjoy your stay!

Hi azara, welcome to DINET. I would def mention the possible POTS and try to get a referral to a dysautonomia doctor! 

I'm so sorry this happened to you. My mom had the same procedure (ERCP) and developped pancreatitis. It's extremely painful. Sending healing thoughts your way!

I agree with contacting your insurance company directly! Good luck!

Welcome Davidinaz!
I'm on Paxil too, not that I'm anxious at ll but it does help with my POTS. Keeps hr kind of in control and helps against my body overreacting! Hope it will help you too!

Unless a doctor or patient contacts us that a Dr. has retired, we have no way of knowing.  Please let us know (via pm or e-mail) when you find out our list is different from what you experience. 

Marcus, I assume it works better to consult him directly instead of e-mailing. He's very busy as he's the dysautonomia doctor in the Netherlands. He doesn't always have all the answers ie he talked my case over with Dr Grubb in the US, which tells me he wants the best for his patients and doesn't think too much of himself than to ask colleagues their opinions. 

Hi Marcus! I'm from the Netherlands too and am working with a great neurologist who is very familiar with POTS and is on our Physician's list! You can find his info here:

http://www.dinet.org/physicians/?advanced_search_submitted=1&csrfKey=7e73563a7f0e643c61a7fe1691e946ad&content_field_7=Gert&content_field_5=van Dijk&content_field_9[1]=Neurology&content_field_17=&content_field_1000=&&&sortby=primary_id_field&sortdirection=asc&record_type=all&time_frame=show_all

Glad to hear he got diagnosed! He can now start treatment! Good luck!

Sending good thoughts your ways Lemons and BuffRockChick, hope things will work out for you!

Glad someone is checking it out Razzles! Good luck on your appointments, hope you will get some answers!

welcome everyone! Glad you found us!

I don't have experience with this lemons, just thought to say "welcome back"!

edriscoll, I've been having huge problems while under general anesthesia, due to dropping bp (0/0) leading to cardiac arrest and (in the longer run) severe dysautonomia. When I had to have my gall bladder out last december I was so very scared to end up in my power chair again. Fortunately the anesthesists were very well prepared and worked with a very strict protocol. Even when they had trouble putting in the artherial line (to measure bp via artery) they held on to the protocol (someone suggested to put me asleep first so I wouldn't hurt so much while they were trying to get the line in) as to not risc my heart getting into cardiac arrest. Everything went very well and I came out of anesthesia much better than ever before. Still quite sick (throwing up for days) and sleeping most of the days and other discomforts but still better than before and NO extreme bp drops nor cardiac arrest which was a huge relief. I don't know the roll of electrolytes in this but wanted to share my experiences as you better be safe than sorry. Take care! 

I don't have the experience getting off of Cymbalta, but I tried to get off of Paxil several times. It turned out that POTS-wise I can't do without it so my docytor and I decided that I should stay on it for the rest of my life. I'm very fine with that as I tried my best and it just didn't work. We recently discussed it again and came to the same conclusion. If I hád to get off it for some very specific reason (not that I can think of any haha) I would try by taking off a sliver per week, per 2 weeks or even per month and always under doctor's super vision. Good luck!

Hi Razzles, welcome to DINET! I'm not sure if you're problem is typical for POTS but wanted to ask if your uneven pupils have been checked by your doctor?

I used to wear an abdominal binder which I fund very helpful. Now that I'm on octreotide I don't need the binder any more

Hi Holly, welcome to DINET. Florinef is just one of the meds that could help your POTS. Here is a link to the "what helps" section of our website. There are more meds and adjustments that could help you get a better quality of life!

I use a stool on wheels in the kitchen, really useful!

Really interesting, thanks for sharing!