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Jessica_

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About Jessica_

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  1. Jessica_

    POTS Treatment Center

    Wow thank you for all of that info! It is definitely a ton of money. If it actually worked it would be worth every penny but I don’t want to spend that much if it is just a scam. I will have to look into that device you mentioned, I would love to learn how to “control” my ANS and heart rate like they claim. Looks like I have some research to do!
  2. I am thinking about trying this place out, the one in Dallas Tx. Have any of you gone? Will you please share your experience and did it help you? Was it worth the $$? thank you!
  3. Jessica_

    Ativan vs Klonopin

    Thanks guys! I see my neuro in November so I will see what he thinks. I try to only take the klonopin 3-4 x a week so I don’t build a tolerance but maybe I have anyway. I wish there was a drug that would stop the surges. So bummed!
  4. Jessica_

    Ativan vs Klonopin

    So I have been taking 1/4 -1/2 of a clonazepam (klonopin) and I thought it was helping quite a bit. It just calms my body down. Now that my night surges are back the clonazepam doesn’t seem to help the surges. My HR still goes high. Do you think I just need to up my dose or try something else? I’ve heard Ativan is a little stronger but doesn’t last as long. Any suggestions? I need help with anxiety and surges and I don’t tolerate SSRI.
  5. Jessica_

    Surges

    Welp a lil update; I have had a surge in the middle of the night for the past 2 nights 😢 I was very hopeful that they were gone for good. The “attacks” or “surges” are definitely my WORST symptom. I am sad they are back. The hard part is not knowing if they will keep happening or when they will happen. I’m hoping tonight I can just sleep and not be woken up by the racing heart and fear feeling. Praying for all of us. We need a cure!
  6. Jessica_

    New diagnosis of hyperadrenergic POTS

    I have hyperpots and what has worked for me along with staying hydrated is clonazepam for the anxiety part and propranolol for the tachycardia. My adrenaline rushes have decreased quite a bit so hang in there hopefully with time your symptoms will improve too!
  7. 🙌🏻 I am right there with you! You are completely right that tachycardia is just ONE of the symptoms, and honestly not my worst one! I’m sorry to hear it took you 2 whole years of misery before you finally got the help you desperately needed. This is a complicated illness but we shouldn’t get punished for that. I still have a bad taste in my mouth from that neurologist. Who in my mind was going to be the one doctor that would understand what I am going thru and instead she treated me as if I didn’t matter. Because I didn’t meet her criteria. She wouldn’t even speak to me. She just did the TTT and then told her assistant to send me back to my EP. It was devastating. Since battling this illness I have lost my faith in our medical system. Granted, there are great doctors out there who will treat you like a human being and have compassion. But there seems to be more insensitive doctors who are after money and don’t have time to DO THEIR JOB and get to the bottom of things. Seems they have forgotten who they work for. Sure I might be steering off topic here but I’m frustrated and venting too! Lol thank god we have this forum, we are not alone!
  8. Great question! The first neurologist I saw who is the “pots specialist” in my area said I don’t meet the requirements for Pots because my heart relsolved itself on minute 7 or something like that. Even tho I went from 80 to 156. However every other doctor I have seen and my current neurologist says I have pots so I guess it’s a matter of opinion.
  9. Jessica_

    Adrenaline Rush

    I had this too! When my Pots first started I used to get this “surge” within 1-3 hours after falling asleep at night. My body would feel tingly and then my heart would just go rapid. Then I would get the shakes when it was all over. It does cause extreme anxiety and doom and my thought is that it’s from the epinephrine. Luckily my attacks started slowing down and I haven’t had one for almost 4 months *knock on wood*. My advice is to talk to your doctor about a beta blocker or clonazepam. Clonazepam has been a game changer for me with this illness. I know we don’t have true anxiety but I think our bodies are in a constant fight or flight mode and clonazepam just calms my body right down. Hang in there! I hope this gets better for you! You are not alone!
  10. Jessica_

    Nausea

    Thank you for the info @Pistol I will try a different diet first to see if I feel any changes. Milk has always gave me stomach aches but I usually ignore and drink anyway since I love it so much *sigh* more life altering for this illness. I have tried Zofran before and it aways gives me a headache! Phenegran knocks me out. WOW @WinterSown ! Thank you for the warning that sounds awful! Luckily I am SUPER cautious when trying a new medication and usually won’t take anything unless I do my research and it feels right. This didn’t feel right since my doctor is blindly giving it to me as a “maybe this will work”. Im glad you finally found relief with some medication @KiminOrlando I have looked into gastroparesis and I don’t think I have it but who knows. This illness likes to throw curve balls so maybe it’s just starting, either way I agree that I need testing! These doctors drive me crazy when they aren’t willing to dig deeper in our illnesses to figure out what the actual problem is. We sure have to advocate for ourselves!
  11. Jessica_

    Nausea

    Thanks everyone! I messaged my neurologist about it and he suggested Reglan? To help with stomach emptying. I’m reluctant to try it until I know if that is even the cause. I will try and get in with a GI doc to get some testing. My guess is it is GERD since I have had heart burn problems in the past
  12. I have hyper pots too and yes I shake/shiver uncontrollably with my surges. My shaking usually starts when the surge is almost over tho and then I shake for about 15-20 mins after my heart finally calms down. I HATE SURGES. Just know you are not alone!!
  13. Jessica_

    Nausea

    This is a new symptom for me. It started about a month or so ago with a episode of intense nausea that lasted all night. I woke up the next day and it was gone so I brushed it off as something I ate. Then a week or so later it happened again. This past week it’s happened 3 times. The nausea is intense and only happening at night, nothing seems to help. I haven’t thrown up with it but it makes me burp a lot (sorry TMI) Help!!! ???
  14. Jessica_

    Surges

    I’m sorry you have had a bad week these surges plague me and are definitely my worst symptom in all of this. They cause me such anxiety because I never know when one will come on so it makes me terrified to go anywhere. Just that feeling of doom and feeling like you are literally going to die is terrifying. I pray they stay away and also that yours go away and stay away too!
  15. Jessica_

    Surges

    Thank you @Bluebonnet08 my iron levels tend to be low as well. I’m keeping my fingers crossed that my surges are gone for good, I hope yours are too!
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