Jessica_

Wow thank you so much for those articles, so helpful!! I definitely plan on using my lil scooter to get around since walking long distances is havoc for me. Thats a great idea to wear matching outfits! I would panic too if I were to loose my husband in such a crowded place. Even when we go see a movie if he leaves to go to the restroom I panic a little. It’s hard to have bodies than need such special care, thank goodness we are not alone in this! I would be lost without dinet. I have my klonopin as a preventative and I’m going to ask my neuro about Xanax. I think I’ve only taken Valium once when I had my wisdom teeth out and it made me a little out of it Lol it’s crazy how we all respond differently to meds and how sensitive our bodies are to certain medications. I will definitely treat myself for doing this, good idea!!! Thanks again! *hugs*

Thank you!! I will definitely ask my neurologist about it, I think I need something a tad stronger than the klonopin. How do you avoid the dependency? I’ve always heard your body builds a tolerance and then you can withdrawal from them. Which is why I only dare take the klonopin a couple of times a week. If I dared I would take it every day because it does help my anxiety a ton but I don’t want my body to build a tolerance!

Yikes! Is that the same as a CSF leak? I was checked for CSF leak with a brain MRI and it was normal. I have had this tingling since 2013 so it started before my Dysautonomia. It was after I gave birth to my daughter so maybe it has something to do with my epidural? Now you have me thinking....

Very good advice and greatly appreciated:) I am actually going to try and do the EFT daily and see how I feel! I could definitely step my hydration and salt game up too.

My feelings exactly! The memories my kids will have are priceless! I suppose I will just ride the rides my 3 year old can ride.. it he can handle it I should be able to right? Lol!

In the beginning of my illness I would have felt the same way. I was so much sicker and wouldn’t have been able to do this. My body is better and stronger than before so I feel up to the challenge. Crossing my fingers I make it through!

My therapist introduced me to this and it actually does help sometimes! It depends on if my body is reacting to just anxiety (then it works) or if I’m having a pots flare and it doesn’t if that makes sense

Hmmm I have never thought of that but it’s worth a try! Thank you!

THANK YOU! That was exactly my thought, I’m not going to make my kids miss out because of my illness. I know it’s going to be rough and propbably cause me to crash and burn but it will be worth it for my kids. Yes my husband will be there and we plan on taking my lil shop rider I bought on qvc. I plan on doing the rides my 3 year old can do so I YouTubed them to see how bad it will be, the only ride I’m sketchy about is space mountain! Thanks for all your tips I will definitely use them!!

I have been prescribed klonopin and I take it as needed when I know I will be in a over stimulated place but it doesn’t really work that great. I still feel anxious and have those doomy thoughts. I see my neurologist next week I will ask him about Xanax. I have always perceived Xanax as something that knocks you out and makes you forget what happens while your on it. How do you feel on it?

So I have planned a Disneyland trip for my little family in a few months and I was googling some of the rides my 3 year old could ride. I YouTubed some of them and it was if I was there already. I could feel the anxiety I will feel and the doom of death. I know how big of a struggle this trip will be for me. Now I am sitting here crying wishing I had my old body back. Back when I felt limitless and wasn’t scared of life. Had to come here to vent since nobody else seems to get that my illness caused all this anxiety and “panic” aka surges. Any of you went to Disneyland and survived? Lol now I’m dreading it.

Unfortunately no. I have mentioned it to a few doctors in the past and nobody knew what it could be. It must not be too serious since I have had a CT scan, lung X-ray and brain MRI in the past year and they were all normal. Us potsies are just unique 😉

Thank you all for your replies. The next morning my heart was racing as usual and it dawned on me that my Orthostatic Intolerance is usually way worse in the mornings and this doctors test was in the afternoon. Plus I agree, it probably wasn’t done correctly. His nurse did it very quickly. I think I am just flaring lately and like you all said, this illness is constantly waving and flowing. Thanks again, god bless us all.

So I have been feeling very on edge lately and I have been having more surges. I messaged my neurologist and his nurse instructed me to go to urgent care and get my electrolytes checked since my potassium and magnesium have been low previously. I went to urgent care and they did the poor mans tilt table and checked my HR & BP laying, sitting, and standing. Blood pressure didn’t budge and my HR went up to 130 for like 3 seconds and went back down to 80 and stayed there. Is my pots gone? Or can it fluctuate and you can have days where HR is relatively normal. I am not on any meds today so a beta blocker did not affect it at all. I still feel so off and have surges so can you still have Dysautonomia without Orthostatic Intolerance?

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!

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!

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!

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.

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!

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!

🙌🏻 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!

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.

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!

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!

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