I hate anxiety

[Jessica_]

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. 

[StayAtHomeMom]

Can you get a doctor to prescribe you a low dose Xanax to help? It may not help everything but it may help some of it. When they gave it to me when I first got sick it helped half my symptoms. Not all but it did keep me from going to the ER about a dozen times. 

[Jessica_]

39 minutes ago, StayAtHomeMom said:

Can you get a doctor to prescribe you a low dose Xanax to help? It may not help everything but it may help some of it. When they gave it to me when I first got sick it helped half my symptoms. Not all but it did keep me from going to the ER about a dozen times. 

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? 

[Pistol]

I am glad you are planning this for your family, I often feel why should they limit themselves because I am sick? But having said that - I would take several precautions. First of all: even if you do not normally use one - take a wheel chair! Walking, standing in line, noise, stress - this can all bring you to your knees. And I know that wheel chair people do not have to stand in line. Also - are you planning to go on any of the rides yourself? I would discourage that ( my own experience ). Then of course - hydration, hydration, hydration. And plan some rest periods - I am assuming you will not be the only adult? So - find a shady corner, use some ear plugs, close your eyes … or read … anything that feels relaxing to you. I myself - were I able to do a trip like that - would only spend a few hours in the park and then go lie down at the hotel. If you do a whole day you might not be able to do anything the next day! ---- Kudos to you that you are willing to do the trip, it will be so much fun! Enjoy your family time!!!!

[Lily]

Have you ever tried reframing the experience of anxiety?  Whenever I have felt that, not wanting to be anxious was as bad as being anxious, if not worse.  Perhaps you could tell yourself it is excitement, not anxiety (positive arousal instead of negative arousal).  Or that it is your body misbehaving, not a function of your thinking and feeling.  Or something like that.  

[StayAtHomeMom]

9 hours ago, Jessica_ said:

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? 

If I remember right they gave me 5mg. I would cut it in half and just take half. It would make me a little tired but it was better than the alternative. There is also an anti-histamine that can be used off-label for anxiety that didn't cause sleepiness. It didn't help me but it helps a friend of mind's daughter. 

[StayAtHomeMom]

When I was starting to get better I went to comic con with my family and I would take dramimine. The motion sickness medicine. I have noise sensitivity and half a pill would help the dizziness. That was before I started my medication I am currently on now. 

[Guest ScottS]

For an alternative to meds you could  try EFT Tapping - https://www.goodtherapy.org/learn-about-therapy/types/emotional-freedom-technique - and here's a useful introductory video - https://www.youtube.com/watch?time_continue=1&v=ZeYkItpMkoQ 

[Help4Me]

I would never be able to go to anything in this condition.....I wouldn't begin to know how to advise you because I can't even bear the thought to getting to my next doctors appointment let alone try to do a vacation...wow.....hope you are strong enough to try it.....I have many other things wrong besides the POTS...so that maybe why I couldn't handle it.....hope you find a way ....

[Jessica_]

7 hours ago, Pistol said:

I am glad you are planning this for your family, I often feel why should they limit themselves because I am sick? But having said that - I would take several precautions. First of all: even if you do not normally use one - take a wheel chair! Walking, standing in line, noise, stress - this can all bring you to your knees. And I know that wheel chair people do not have to stand in line. Also - are you planning to go on any of the rides yourself? I would discourage that ( my own experience ). Then of course - hydration, hydration, hydration. And plan some rest periods - I am assuming you will not be the only adult? So - find a shady corner, use some ear plugs, close your eyes … or read … anything that feels relaxing to you. I myself - were I able to do a trip like that - would only spend a few hours in the park and then go lie down at the hotel. If you do a whole day you might not be able to do anything the next day! ---- Kudos to you that you are willing to do the trip, it will be so much fun! Enjoy your family time!!!!

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!! 

[Jessica_]

4 hours ago, Lily said:

Have you ever tried reframing the experience of anxiety?  Whenever I have felt that, not wanting to be anxious was as bad as being anxious, if not worse.  Perhaps you could tell yourself it is excitement, not anxiety (positive arousal instead of negative arousal).  Or that it is your body misbehaving, not a function of your thinking and feeling.  Or something like that.  

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

[Jessica_]

2 hours ago, ScottS said:

For an alternative to meds you could  try EFT Tapping - https://www.goodtherapy.org/learn-about-therapy/types/emotional-freedom-technique - and here's a useful introductory video - https://www.youtube.com/watch?time_continue=1&v=ZeYkItpMkoQ 

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 

[Jessica_]

49 minutes ago, Help4Me said:

I would never be able to go to anything in this condition.....I wouldn't begin to know how to advise you because I can't even bear the thought to getting to my next doctors appointment let alone try to do a vacation...wow.....hope you are strong enough to try it.....I have many other things wrong besides the POTS...so that maybe why I couldn't handle it.....hope you find a way ....

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! 

[Guest ScottS]

5 hours ago, Jessica_ said:

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 

It does make sense. I approach EFT tapping in the same way I do meditation - as a preventative measure, not a quick fix or cure. My best advice (not that you asked for it) is to try to live in the moment and to try to prioritize your own self well care today, to hydrate as needed, to munch on that salty snack as needed, to get (or keep) your blood flowing by exercising. And etc. Tomorrow will come soon enough and who's to say you won't be (and feel) better equipped to face it when it does.

[StayAtHomeMom]

Beware of rides. I took my family to a local fair this past summer.  I rode the one that is a giant ship that sways back and forth. Wore me out. But I could do the kiddy rollar coaster that just goes in circles. the memories are great though. Wouldn't trade them for the world. 

[Jessica_]

19 minutes ago, StayAtHomeMom said:

Beware of rides. I took my family to a local fair this past summer.  I rode the one that is a giant ship that sways back and forth. Wore me out. But I could do the kiddy rollar coaster that just goes in circles. the memories are great though. Wouldn't trade them for the world. 

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! 

[Jessica_]

6 hours ago, ScottS said:

It does make sense. I approach EFT tapping in the same way I do meditation - as a preventative measure, not a quick fix or cure. My best advice (not that you asked for it) is to try to live in the moment and to try to prioritize your own self well care today, to hydrate as needed, to munch on that salty snack as needed, to get (or keep) your blood flowing by exercising. And etc. Tomorrow will come soon enough and who's to say you won't be (and feel) better equipped to face it when it does.

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. 

[potsiebarbie]

On 1/2/2019 at 9:14 PM, Jessica_ said:

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? 

I have Ativan, Klonopin, and Xanax (I only occasionally use them, and never at the same time obviously). Lol They all belong to the benzodiazepine drug class. Everybody is different, but this is how my system (lol) works... If I want something to just barely take the edge off, and is so subtle that I hardly notice then Ativan. Emergency, panic attack, needs to work now, then Xanax. For something almost as good as xanax, but more "balanced" (not quite as strong, but last longer, then Klonopin. Like I said everybody is different. But I wouldn't worry too too much. Maybe do a trial run of a small dose of Xanax and see how it goes. Good luck! 

[WinterSown]

I completely sympathize. I got separated from my husband while we were at the Cleveland Zoo and I had a panic attack -- I was so upset I didn't think to call him. He came back for me, he found me. This incident became part of my medical history and helped lead to my dysautonomia diagnosis. Last time we went on vacation we traveled in blue jeans with matching jackets and caps--we looked like twins which was the point. If we get separated we can easily describe what the other is wearing--the same exact outfit. We learned this from an elderly couple--the wife is not doing well and the matching outfits lower some of the stress in an accidental separation by the crowd or simply being unaware and wandering away from each other. 

There are some articles that might help, there are many people who feel the same as you with similar concerns.
Coping with Anxiety at Disneyland

Disneyland Services for guests with disabilities.

How to cope with a panic attack at Walt Disneyworld.

I do hope there's some information that can help with your trip--I also keep a vial of low-dose 2mg valium in my purse--I get vertigo from sensory overload. I bite the pill in half and take 1mg to start, and usually with a coffee or diet cola. I do fine, it takes the edge off of the environment. Mom's make a lot of sacrifices for their children--when you get to the gift store get yourself something extra meaningful because you earned it! 

Hugs.

[Jessica_]

12 hours ago, potsiebarbie said:

I have Ativan, Klonopin, and Xanax (I only occasionally use them, and never at the same time obviously). Lol They all belong to the benzodiazepine drug class. Everybody is different, but this is how my system (lol) works... If I want something to just barely take the edge off, and is so subtle that I hardly notice then Ativan. Emergency, panic attack, needs to work now, then Xanax. For something almost as good as xanax, but more "balanced" (not quite as strong, but last longer, then Klonopin. Like I said everybody is different. But I wouldn't worry too too much. Maybe do a trial run of a small dose of Xanax and see how it goes. Good luck! 

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! 

[Jessica_]

1 hour ago, WinterSown said:

I completely sympathize. I got separated from my husband while we were at the Cleveland Zoo and I had a panic attack -- I was so upset I didn't think to call him. He came back for me, he found me. This incident became part of my medical history and helped lead to my dysautonomia diagnosis. Last time we went on vacation we traveled in blue jeans with matching jackets and caps--we looked like twins which was the point. If we get separated we can easily describe what the other is wearing--the same exact outfit. We learned this from an elderly couple--the wife is not doing well and the matching outfits lower some of the stress in an accidental separation by the crowd or simply being unaware and wandering away from each other. 

There are some articles that might help, there are many people who feel the same as you with similar concerns.
Coping with Anxiety at Disneyland

Disneyland Services for guests with disabilities.

How to cope with a panic attack at Walt Disneyworld.

I do hope there's some information that can help with your trip--I also keep a vial of low-dose 2mg valium in my purse--I get vertigo from sensory overload. I bite the pill in half and take 1mg to start, and usually with a coffee or diet cola. I do fine, it takes the edge off of the environment. Mom's make a lot of sacrifices for their children--when you get to the gift store get yourself something extra meaningful because you earned it! 

Hugs.

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*

[Jessica_]

1 hour ago, WinterSown said:

I completely sympathize. I got separated from my husband while we were at the Cleveland Zoo and I had a panic attack -- I was so upset I didn't think to call him. He came back for me, he found me. This incident became part of my medical history and helped lead to my dysautonomia diagnosis. Last time we went on vacation we traveled in blue jeans with matching jackets and caps--we looked like twins which was the point. If we get separated we can easily describe what the other is wearing--the same exact outfit. We learned this from an elderly couple--the wife is not doing well and the matching outfits lower some of the stress in an accidental separation by the crowd or simply being unaware and wandering away from each other. 

There are some articles that might help, there are many people who feel the same as you with similar concerns.
Coping with Anxiety at Disneyland

Disneyland Services for guests with disabilities.

How to cope with a panic attack at Walt Disneyworld.

I do hope there's some information that can help with your trip--I also keep a vial of low-dose 2mg valium in my purse--I get vertigo from sensory overload. I bite the pill in half and take 1mg to start, and usually with a coffee or diet cola. I do fine, it takes the edge off of the environment. Mom's make a lot of sacrifices for their children--when you get to the gift store get yourself something extra meaningful because you earned it! 

Hugs.

I forgot to ask you about your vertigo. I have had vertigo briefly for the past 10 years or so. Except it was positional and would only occur when I would turn over from my left to my ride side and then objects would move or the room would spin. Now I am getting these episodes (I’m pretty sure it’s vertigo) where out of nowhere the world will start spinning and I feel like I’m going to pass out. It only lasts a few minutes and then goes away. I haven’t passed out from it and I checked my BP one of the times and it was high 140/99. Does that sound similar to your verigo? What are your spells like? What do you do for them?

More hugs lol 

[potsiebarbie]

1 hour ago, Jessica_ said:

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! 

I've always had anxiety (since I was a child). And eventually I started suffering from really bad panic attacks. So when I took them I felt normal. I've gone thru periods of taking them slot as needed, to periods of my psych having me take them on a schedule as preventative to not needing them at all. The worked great before pots, but oddly enough, not so effective with pots. Which totally sucks. So Idk. I've never had like an addiction issue with it, but I do know we build up tolerances which is why it was helpful to sometimes not need them at all, then when I go back I can start with a low dose. IDK if any of that makes sense. Lol Pots brain. 😵

[Jessica_]

6 hours ago, potsiebarbie said:

I've always had anxiety (since I was a child). And eventually I started suffering from really bad panic attacks. So when I took them I felt normal. I've gone thru periods of taking them slot as needed, to periods of my psych having me take them on a schedule as preventative to not needing them at all. The worked great before pots, but oddly enough, not so effective with pots. Which totally sucks. So Idk. I've never had like an addiction issue with it, but I do know we build up tolerances which is why it was helpful to sometimes not need them at all, then when I go back I can start with a low dose. IDK if any of that makes sense. Lol Pots brain. 😵

It totally made sense and I completely understand the pots brain! I try and convince my husband that brain fog is a real thing because he gets so frustrated with my memory lol! I’m definitely going to try the Xanax assuming my neuro will give them to me. I’m happy to hear you have been okay off of them even if you were taking them regularly that eases my anxiety (ha) about them! 

[WinterSown]

22 hours ago, Jessica_ said:

I forgot to ask you about your vertigo. I have had vertigo briefly for the past 10 years or so. Except it was positional and would only occur when I would turn over from my left to my ride side and then objects would move or the room would spin. Now I am getting these episodes (I’m pretty sure it’s vertigo) where out of nowhere the world will start spinning and I feel like I’m going to pass out. It only lasts a few minutes and then goes away. I haven’t passed out from it and I checked my BP one of the times and it was high 140/99. Does that sound similar to your verigo? What are your spells like? What do you do for them?

More hugs lol 

Without a comparison your numbers don't sound bad at all--some of us do that as a norm or want that for a goal. Initially I had the side to side whooshies and a sense like I was in the center or a 33rpm. My primary tested me with a Dix Hallpike Maneuver and in about three seconds I started freaking out and begging him to sit me back up. My first sessions for vestibular PT were in a dark room with a wonderful young doctor cradling my head and counting down as he re-positioned the crystals in my left ear. It took a few sessions but it's much better. I still see the same doctor now for all of my PT scripts from the doctors treating my other dysautonomia symptoms and he has combined them all into one program. 

I don't get vertigo from side to side movement anymore, I rarely get the spin. Yesterday, I was in traffic stopped waiting for a light to turn. The truck next to me started to slowly back up because he was well into the crosswalk--I thought I was going to hurl right there. I was still and he was moving backwards.  I do have problems with length--the sidewalk extends or ripples up ahead. Doorknobs are weird sometimes too because of the reaching. And, I sometimes think I am seeing out of a fisheye camera lens; the view is slightly extended and a bit circular at the edges. I do have some balance and gait problems, I am still in PT and likely will be for some time more, but it's been a while since my shin had a lump the size of an egg from tripping into anything in my way.  

A couple of years ago we were vacationing and took a short cut from Cincinnati to Pittsburgh that took us through a corner of West Virginia. We drove on this little itty bitty mountain road that was more twisty than a roller coaster. We had to stop and I had to get out and pray to live. There was no place to turn except at a farm gate in front of beautiful cows. At about the same place returning, on the other side of the road, I got out and retched. As I was clutching the grass in front of me I grabbed a small piece of stone. I still  have it in the junk drawer in the kitchen, my souvenir. Lesson learned, study the geography for road trips and take the roads you can handle, or plan to take frequent breaks to do more than go pee, you need to walk and improve your circulation. We like little parks or tiny museums--fun things to find along routes. Fresh air helps chase the whoozies away. And water. Plain water. sipped. slowly.

My cardiologist, whom I've been seeing since my first bad tripping incident, always reminds me to try to find balance. He isn't talking physical balance only, but balancing how much I let symptoms effect my life. Sometimes you can't avoid triggers. For me, seeing things spin horizontally--like a carousel or a top, can trigger an attack. I'm okay with ferris wheels but put it on it's side and I'm whoozy doozie in a heartbeat. I do better in museums than amusement parks. Vertigo is effected by sensory overload--vibrations from heavy noisy trucks rolling down the street can bother me. Ugh. This is how the low-dose valium helps. It is a muscle relaxant and tones down the movement of your eyes and takes the edge off of the sensations at the same time. It works like a charm but has the caution of making you so relaxed you're off your sharp edge. I make a coffee or drink a diet cola--my fallbacks for energy because I can't do energy drinks which make me feel like a hyper chipmunk. I start with half a pill, I can take up to two pills. I need only one to knock me out. If I have to take the second half of a pill I am done and it's nap time. I can't always avoid triggers because life happens all around me but I do have some control with limitations. Vertigo is awful but it can be minimized and its effect on your life reduced.