Jessica_

I have never tried a Benzo because like a lot of people on here I am terrified of meds! I don’t react to them like “normal” people do. I am on Propanolol right now which has helped with my night time attacks but it’s not helping with the on edge feeling and the sweating and body rushes.

I totally agree that the anxiety is physical however, sometimes I feel like my anxiety triggers the surges and I haven’t been able to figure out the off switch on that. I am really hoping to find a medication or something that can calm my body down so I am not in this constant state of fear.

So true! I never knew how faulty our medical system was until I desperately needed it. I am blown away how awful I have been treated by many of the doctors I have seen and the neglect I have felt.

Never heard of this one! Definitely worth looking into. Now i just need to find a doctor willing to help *sigh*

I would love to find one that worked. Did yours get rid of the surges? I think the surges are what plague me the most and cause the most anxiety.

Did the clonazepam make you sleepy? I have a 2 & 4 year old and I need a med that doesn’t cause drowsiness, it that’s even possible!

I feel like anxiety is one of the worst symptoms of my POTS. I hate to even admit that it has become a problem because since day 1 of this all of the doctors I have seen have tried to blame all of my symptoms on anxiety which is not true. I believe my hyper-pots has induced the anxiety. It has become so bad that i am having troubles driving and I won’t take the freeway anymore. Now let me get to my question! What anti-anxiety med helped you best for hyper-pots? I tried Zoloft and everytime I would take it within an hour I would have a huge attack and would have tremors. It was awful. I don’t react to medication normally so I just want something mild that will take the edge off. Any suggestions?

Thank you for response! I have actually been wanting to start doing yoga and meditation for quite some time and I can’t seem to find the time with my 2 & 4 year old. I know that sounds like a lame excuse for someone who is so desperately wanting to get better. I suppose i will try and figure a schedule out and start, i am sure it will be the best thing for my body right now since I seem to be stuck in the “fight or fight”. I am happy for you that you were able to get better that is amazing! I often think how ungrateful i was when i was healthy and active and I guess this experience has definitely opened my eyes to how much the little things matter.

THANK YOU! 🙌🏻 I was very upset when I learned she would not see me, i was actually crying. I had waited 4 months for my appointment and was so excited to see an actual POTS doctor. Apparently she’s “so busy” that she will only see severe cases. I might look like a mild case on paper but to me my everyday is anything but mild. I am still trying to fight the good fight and try and find a doctor who will take the time to help me. I called and got placed on Dr. Grubbs waiting list but im not sure I would even be able to make it to Ohio! Thank you for your response it is refreshing to hear from people who get it.

Thank you!!

Thank you for your response! It’s pretty crazy to me that a doctor can get to decide who’s “bad enough” to get the privilege of being treated by them. It’s beyond frustrating. I thought I was doing okay on my current regime until these last 2 weeks, I have completely crashed and burned. Trying to hang in there but it’s getting hard!

Hi my name is Jessica and for the past 10 months I have been a observer of this website desperately looking for answers. Googling all my symptoms before I knew what in the world was going on with my body and usually something on this site would pop up. I suppose I will start with my lil story; in January of this year I had a SVT attack. I have had SVT attacks since my early 20’s but never one like this one. This one lasted longer and almost made me pass out. I was also very sweaty. Once it was over my heart wouldn’t go below 170 so I ended up calling 911. The docs didn’t know what was happening and they kept me in ICU over night. The next day the cardiologist decided to blame my high heart rate on my thyroid and placed me on Atenolol and sent me on my way. Long story short this WASNT my Thyroid. After dozens of different doctors visits, ER visits, even a heart ablation to fix the SVT to see if that helped anything my symptoms remained. Constant heart rate 120-130. Attacks of sinus rythym of 170-180 with impending doom and feeling horrible. The constant sweating of my palms and my feet. I finally was convinced I had dysautonomia and POTS and I think the SVT induced this. I did the at home version of HR check going from sitting to standing and I would go from 70 to 140. I begged my EP to refer me to a neurologist and he did, I waited 4 months for my appt with Dr. Cortez and I was oh so excited to pick her brain about this condition since she was the POTS specialist in Utah and the only doctor that would know anything about what I am going thru. Little did I know I would never get the chance to meet this doctor. Anyhoo, she did a chatocolomine blood test and my norepinephrine levels are slightly elevated at 729. She also did a tilt table test and my HR and BP went thru the roof! But since on minute 7 my body started going down and my heart went from 150 to 99 she said I didn’t fully meet the criteria for POTS and she refused to see me. I guess I am here because I am still so lost. I am still struggling everyday and I cannot seem to find a doctor to help me. How can I not fit criteria for POTS when my HR goes 30-40 beats faster everytime I get up? My Diastolic BP is also high 85-100. My biggest symptom right now however that is plaguing me is the attacks. Most nights after 2-3 hours of sleep I wake up in a sweat and tingling and my HR goes thru the roof. Doesn’t matter if I do deep breathing or anything, it goes off until it’s done. These attacks are starting to happen during the day and it’s causing me the worst anxiety which in turn only makes the attacks worse. Has anybody had any relief with these and if so, HOW? Is there a medication that specifically calms the SNS? My honest opinion is that I am having adrenaline rushes and since my norepinephrine is already high it’s like a volcano. Someone help!! ps I am currently taking 10-20mg of Propanolol 2x a day and midodrine 5mg 2-3 x a day per my cardiologist. Thank you for reading my novel. I look forward to being apart of this lil community and actually communicating with people who can relate!