How do you get over the initial fear?

[JenniferInOhio]

Well, I've now had the POTS diagnosis for about 4 months. We live near Cleveland so I feel safer knowing that doctors are around.

The problem is that I want to go and visit my mom, but she lives in a very small town in rural West Virginia. I know this is absurd, but I'm afraid to visit because I'm afraid I will die if I have some sort of POTS attack. The nearest hospital is about an hour away which wouldn't be much help because they wouldn't know anything anyway.

What's my problem? My mom has visited me several times over the past few months because I'm afraid to go there.

How do you get over this fear that your just going to drop dead?

[sally]

Hi Jennifer,

If you are heading out for a trip, make sure you have plenty of drinks, snacks and medications and are feeling well at the time and pace yourself. Depending on the severity of the orthostatic problems is how you should look at traveling. Maybe take small trips to build up your confidence so you won't be so nervous when you have to take a longer trip. Good luck and stay well.

[MomtoGiuliana]

It's not easy. I had problems with anxiety for the first several months after diagnosis--as well as before diagnosis. It sounds like you are too. Actually anxiety IS a POTS symptom.

I think the best thing is to educate yourself about the condition and about your own body's unique situation with POTS. Knowing what you can do to improve symptoms or relieve an attack will help with your feelings of anxiety. Also, understanding that POTS is not life-threatening helps.

If you continue to have challenges with anxiety, please mention this to a doctor!

Take Care,

Katherine

[JenniferInOhio]

Thank you for your replies. I know, I keep telling myself it's not life-threatening.

I've always had problems with anxiety. I started having panic/anxiety attacks about 7 years ago. I've never been on any meds for it. I have them a couple times per year.

In fact, when I first complained to my doctor about all my problems pre POTS diagnosis (chest pain, shortness of breath, tingling in my feet), she told me I was 30 years old, there wasn't anything wrong with me and wrote me a referral to a psychotherapist.

Thanks again.

[Dizzy Dame]

Jennifer, I can totally relate to how you feel. I'm also new in the POTS diagnosis (6 months), and I still have horrible anxiety. When my pressure starts to drop, and keeps dropping, I always worry it's never going to come up . I've been staying with my grandparents recently in rural North Georgia, and the nearest hospital is 20min away. I'm used to living in the city (I live three blocks from a hospital) so when I first came here, the thought of having to wait 20 min scared the **** out of me.

I had to get over my fear though, and I've been here a month and haven't died. Mostly I feel better since I got emergency meds from my doctor. For example, I don't take Midodrine, but my doc gave me a small prescription just in case my pressure gets deadly low, I also carry an epi-pen for my latex allergy.

My anxiety has gotten better, but only because I'm beginning to BELIEVE that POTS won't kill me. Before, I knew on some level that it wan't deadly, but I had a hard time trusting that I could feel as bad as I do without dying.

I hope you can go visit your family, and begin to overcome this anxiety and start to feel better

Cheers,

Lauren

[Traci]

Presently it feels like I'm living in fear with alot of anxiety now, 24 hours a day.

Some of my symptoms make me wonder if it is autonomic or something else is going on.

Than the symtom goes away and something else starts.

I can't seem to get out of this horrible cycle.

I guess I am going to have to gain some new coping skills.

I use to meditate and do alot of yoga, but my mind has been so bogged down with the symptoms, that I haven't had alot of focus.

Traci

[Ernie]

Hi,

I just ignore my fear and go ahead.

[taylortotmom]

Hi, Jennifer. Fear can be handled one of two ways- you can control it or it can control you. So I handled this problem by one, doing my research. And second, making a plan of action for all the "what if's". I went through a period of "death anxiety" but I definitely feel more in control now. Knowing the facts and having a plan of action have helped tremendously.

Carmen

[Gena]

I used to feel the same way when I was first dx'd. I had major anxiety and still get it back when I'm in a POTS hole. When I first had symptoms I was afraid to walk down the street in my neighborhood as I usually did after dinner b/c I thought I would get too far a away from home and something terrible would happen (pass out, heart attack, etc). I was the same way about going to the grocery store or driving any distance what so ever. But gradually I learned to get used to these crazy symtpoms (although they can still be scary from time to time) and eventually my symptoms improved.

I don't mind traveling by car for any distance now and I've gone on vacation a few times. It just takes extra planning and preparing. I haven't tried traveling by plane yet, that's my next hurdle!

Just be gentle with yourself and take baby steps. If you travel to your mom's house, you'll have the comfort of knowing that mom will certainly take care of you while you're there.

It does get better, I promise!

Hugs,

gena

[Evie]

Yes you can feel quite vulnerable in new environments (or away from your safety nets). I know i dont like travelling alone (on public transport especially as i have had bad experiences when someone was not there to help me). Now that my symptoms are alot better i am not so fearful. They only tend to come about when my symptoms are bad and i feel out of control.

Maybe if this fear is so strong you could seek help to overcome it? I have had a friend who had anxiety and thought he was going to die when he had attacks, CBT and medication helped him alot. He did not have POTS though so i realise thats another spanner in the works.

Im going overseas next year by myself for 6 months and i admit when i dont feel my best i really question how i will manage. So i have tried the whole CBT approach and have found it has helped me. I use to set up worst case senarios in my mind and although those fears may be rational (like being scared i will faint and noone will pick me up) i just work through it and think ... well what will i do if that happens .. or even think .. SO WHAT?!

[Ianankatie]

Hi Jenifer

Feeling anxious is completely normal- looks like we have all been trough it at some point! There are loads of great tips of how to cope with the journey on here, you'll be fine.

Remember there are alot of us who don't have good doctors around- I have suffered for several years and only been to hospital after an attack once-touch wood! I never bother to go as the doctors are so useless round here they don't know what to do with me anyway. It is scary but every time I have an attack I just work through it with me husband. You are much safer with your family than you are with most doctors!!! If you explain it well to them and tell them what to do when you feel it comming on believe me they will be much better for you than a doc who hasn't a clue and won't listen to what you have to say anyway!!

Good luck

Katie

[avais1]

I used to really struggle with this. It does get better. I finally realized this: when I had an attack, what did Mayo really do for me? Salt and fluid, and 5 mgs of Lexapro. That's it. My heart was racing at 150 sitting down, 113 lying down, but they sent me home and said "take it easy and have a good time (I was on vacation at the time)". I don't do well with Beta Blockers, so that was out. Basically, my attacks in an ER are treated no better than the ones I have at home, in fact, sometimes the ER is worse. So the way I figure it, I can be sick ANYWHERE, the treatment will still be the same - salt, fluids, rest. As long as you have access to these three basic things, it shouldn't matter where you are.

It is way too easy to get caught up in the "what if" line of thinking. All it does is drain you. I say, GO AND HAVE A GOOD TIME. Even if the worst case scenario happens, you'll make it through, as you have every day up until today. And you will continue to do so.

Take care. HAVE A GOOD TIME!

[DawnA]

Time and more time will help your fears. This illness takes getting used to. I had a lot of fears in the begining. Push yourself a little and you will be surprised and relieved that nothing happened. The more you do it the easier it gets. But if you just can not bring yourself to go to your moms it is OK. You need to give yourself more time to adjust to this disease. Take small steps..too much stress and anxiety just makes us worse...then our anxiety gets worse just a viscious cycle......

Dawn Anich

[KathyP]

Hi Jennifer;

Wow there are alot of great suggestions here! Speaking as someone with dysautonomia and suffering with anxiety for over 10 years I am here to tell you that you CAN do it. You have to visualize it, take it slow, breath deeply and most of all think positive. I have had to totally rethink the way I did things. For the first time in over 10 years I have gotten my anxiety under control.

You can do this!! If I can, anyone can. I know and fully understand that POTS symptoms make you feel so incredibly miserable. But think about it. Is your fear about not being able to have a hospital near by? What has your doctor advised you about?

Think about what you might be missing if you don't go. Hopefully the colors will be at their peek when you go. This can really be a great goal for you to conquer to beat anxiety. You will be going with someone, won't you? The one thing about POTS and Dysautonomia is that it makes your life miserable and puts limits on you. Stand up to that. Make it a challenge. Anxiety hasn't killed me off!! I hope this gives you some confidence. I have been where you are so many times and opted to stay home. I missed out on so many wonderful memories because of it. So breath in deeply and slowly in the count of 4 and out slowly in the count of 4. Think about yourself being there. Think about the wonderful things you can do, even if it is little things. And conquer your fears. That is all they are is fears. If you are OK in your own home, think of this, "make yourself your safety zone" no matter where you go you will be OK.

Take care!

KathyP

[JenniferInOhio]

Wow ~ thank you SO much for your advice and support!!! I can't tell you how much this board has helped me in the past few months! I am also relieved to hear that it isn't just me who is anxious all the time. I AM going to get past this and go on with life.

Thanks again!!