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Just Need Some Hope


mvdula
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I have an appt with Bev, Dr Grubb's RN in a couple weeks. I am looking forward to it because I have a tiny bit of hope they can help/diagnose me. My suspected diagnosis is POTS - I think brought on by pregnancy. Most of the time I feel fine, at least ok, sometimes totally normal - meaning I don't have many actual symptoms day-to-day, doing what I call 'normal' activities. The problem is because of the episodes (extremely scary) I have had from POTS, I also have anxiety and panic disorder. The physical symptoms I have mostly come on (these are the scary ones) from exertion or heat (occasionally emotional stress). I am so afraid of these things - and not sure where my threshold is, that I avoid a lot. I get up, take the kids to school, maybe run 1 small errand and come home (with my 17mo old). There I stay for the rest of the day. I makes dinner, etc with no problem. I don't often go to grocery store with baby, since I have felt somewhat bad just unloading the cart onto the belt (not sure if anxiety or POTS). I do go out by myself somewhat on wknds to grocery shop or errands - feel less anxious bc leave baby at home with husband and he can unload groceries when I get home. So, not exactly agoraphobic, but somewhat. If I have to go out for something out of the ordinary, say to pick up someone from airport, or - tonight - go to a class in the city (with my husband) - I am extremely anxious - on the edge of panic - all the way there - I tend to settle down a little bit after it starts. I don't know how to get out of this - please help me. I have been to therapy but stopped going after 3 months bc I didn't see much more benefit. I am crying as I write this because I feel like my life just suddenly changed and feels like it is ruined. Just not sure how I am ever going to get through this. Sometimes I think just the trauma of what has happened (I mean scary episodes, where I really felt like I was dying - yes, I have also had panic attacks - they aren't 1/2 as bad as what I call POTS attacks), has made me so traumatized. I cry when I am alone, and even though do share things with my friends, I don't tell the whole story - I don't tell them I wonder how I am going to go on and be the wife and mom I want to be when these things happen to me and I am so TERRIFIED. I don't tell them that sometimes I hope maybe one of these episodes would just kill me so I don't have to live like this anymore. My husband has only a certain amount of tolerance for listening to me talk about symptoms, etc. He is a good husband, sympathy is just not his best quality. So, I feel alone, terrified, and hopeless. Can anyone help me?

Thanks for reading...

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Literally feel like I am dying (the worst ones) or just wrong (not the worst ones). Tachycardia, shakiness, weakness, fatigue (extreme), hot, revved up feeling - some combo of these depending on attack. Words do not do this feeling justice - the overall feeling is just so wrong and awful. I have had it to a greater or lesser degree depending on trigger - heat, exertion, (extreme emotional stress). Can go on anywhere from a few minutes to 2 hours or so - sometimes with fatigue (to lesser degree) afterwards.

I also have chest pain and PVCs - but these symptoms are not generally part of these attacks - the chest pain and PVCs are independent of each other and any other symptoms - sometimes from anxiety, sometimes I have no idea.

I do not have dizziness, nor pass out.

My cardio ep did a poor man's TTT and pulse went up like 40 bpm after standing for 1-2 minutes - but I generally have no trouble with standing.

Bending over is one of the worst things for me though - can't keep doing it (like pick up toys) - feel bad afterwards - not one of these attacks, but just weird, not right.

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When I crashed with my POTS in late 2000, I started getting these spells, just like what your having. I had them before, a few months after my son was born in 1981, and again in 1990. In 1990 I was put on a beta blocker, and took xanax on occasion for a few months. In Dec. 2000 I was getting spells of tachycardia even on the beta blockers and it scared the you know what out of me.

How could I still get tachycardia while on a beta blocker? I ended up losing 25 pounds in 2 months because my body was so wound up/but fatigued at the same time if that makes any sense. My stomach just shut down. Everything felt tight as a snare drum, and it was hard to choke any food down. I know those attacks, and know how they make you want to crawl out of your own skin. No one knows what they are like unless they have them.

The good news is they seem to come and go--------------the going is the good part. But I dread it when they come back. You would think I would get used to them, but I don't think anyone can ever get used to this kind of feeling----even now when they are only half as bad as they used to be.

Cripes, sometimes when I got them everything wants to work at the same time----------I have to go #2, pee, shake, tachycardia-------then I start gagging ect. It's not a panic attack, it's an out of balance autonomic nervous system, and for some reason the sympathetic nervous system thinks it needs to turn on-------------usually at the most inappropriate time. When we are trying to do something we get overstimulated so easily, and then of course more prone to have these spells.

When we go out of town to see my other doctors I always fear getting these spells. Mostly, I just get overstimulated now, and just feel shaky, and my heart rate gets a little high from being overstimulated. I think the combination of my medications helps keep the full blown attacks from hitting me, and they are only half as bad. Sometimes they try to happen, and the fuse that tries to ignite the attack fizzles out. Thank God, because I used to have marathon attacks that would last 3-4 hours.

I hope Bev can help you find some long term relief from these nasty things.

Big hug to you...... I really feel for you, because I know how these feel........

Maxine :0)

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Hi!

I hope Bev is able to help you figure things out! What meds are you on? Have you seen any other drs for this besides your GP? Have you had many tests yet, or are you seeing Dr. Grubb for this?

With four children all of this must be hard, do you have anyone to help you out? You may be overdoing it, and this is your body's way of telling you this.

Also, because it sounds like you have a lot of stress etc. do you think it maybe helpful to see about trying a different therapist/psychologist that can help with relaxation techniques, biofeedback, and stress reduction to try and lessen some of your symptoms. I don't necessarily think it will "cure" anything, but I was wondering if it could help to just lessen the intensity of some of everything you are going through.

I have to go, but if I come up with more thoughts I will try and get back on. :)

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ajw and Maxine-

Thanks so much for the sympathy and encouragement. It does help me to get out and do things (like tonight) - since staying home not doing much makes me more depressed about all this. I have a good cardio ep - he is very good - very caring - very down-to-earth and knowledgeable about POTS - that's why he got me in with Bev - since Grubb's office told me his next appt is Dec 30th!!! (Also, have seen an endo, who did cortisol and thyroid testing - which came back fine except my initial a.m. cortisol was somewhat low for morning - 11.2 I think (range 8.5-22) - but ACTH test was fine they said - that was a few months ago when things were worse) Apparently, Bev could get me in sooner with Dr Grubb if she so decides (at least thats the impression I got) - but I don't think I am as bad off as many. It's just that the symptoms (mostly attacks) have been so scary that the trauma, anxiety and depression is hard to get out from under. I do have help - my husband does a lot - my kids help a lot - and we have a lot of good families we are friends with that would do anything if I needed it. I also have a carpool driving my kids home from school every day - they live on our block - and we help each other in any emergency too (I have been to their house at 2am so they could go to the ER and vice-versa). Even a great school that makes arrangements to provide meals (sent home with kids) when families need help. Oh, and an in-law family I can always call on. It doesn't get much better than that. So, I thank God for the good friends and help that I have. It is just hard to share my real feelings and emotions about what has happened because no one really understands how much it affects you unless they have experienced it. Thank you all for caring!

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Fear can be debilitating as you well know. Are you familiar with the self-fulfilling prophecy? It's the concept such as in this case, the fear of an attack makes one behave in a manner that induces the attack- if that makes sense. It goes back to control.

In my own situation, I have learned that while there is so much about this stinking disorder that is unpredictable, the more I learn about my body and how best to ward off situations that promote "attacks" the more in control I feel. The more in control I feel the less likely I am to have an attack.

I truly get what you are saying. Many, many times I have gotten afraid of having an event in line at stores, so I have to mentally calm myself down. I keep Gatorade in my purse and while I stand in line I shift my legs and drink Gatorade. Soon, I feel much better.

If you allow the fear of "what if" to dictate what you do, the disease wins. And I personally, REFUSE to let this thing win. Sometimes, it does. Yes, there are some things the best thought processes cannot undo- I get that. Trust me, I have been in the hospital enough to understand you can't "think your way out" of dysautonomia.

But I do think you can empower yourself with the ability to "calm down" in anxiety inducing situations and yes, as silly as it may sound, going to the store is very anxiety inducing for us. The lights, the crowds, the standing, the pushing carts- it is physically taxing- not to mention any driving that might be involved.

Another thing, I notice you are on Klonopin- occasionally. This might might be part of the issue. It might be more appropriate to have a steady low dose instead of on an as-needed basis. I know that my anxiety is much worse off Klonopin than before I ever starting taking it. I do not handle Klonopin well- "occassionally"- I need a more consisent dosage. Just a thought- so discuss it with your prescribing doctor if you feel it might be the case with you.

So good luck- I hope some of this makes sense. But you are certainly not alone in your fear but there are ways to manage it rather than it managing you.

Carmen

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Guest tearose

I am so sorry you are having this rough experience. I do not have the anxiety you experience but I understand the need for hope in rough times. It sounds like the hope you seek is the desire for a way out of the current situation. I am certainly confident you should have tons of hope!

You speak of being afraid of going out, of bad things happening, well, do they happen? If you know what brings these spells on, is there a way to control the situation so you are not put near a trigger? Of course, if you get triggered by a virus, you can't not go out and be exposed but you can prepare for stressful situations and take measures to bypass these. I have trouble lifting groceries because I have trouble with my arm, if I have a lot of heavy packages, I just ask the check out clerk to please send a helper out to my car with me. I give a little $1 tip and spare myself the pain and swelling.

Try to see what all those triggers are and one by one find a way to prepare for them and ultimately avoid them. I don't mean to make light of an anxiety issue, this may be something that is much much harder for you to do than others! Don't judge yourself by comparing yourself to others either. From my experience, POTS relapses eventually pass. I think with more work, you could also make the anxiety relapses be less frequent or prolonged! That is something I will hope for on your behalf.

Sending you healing thoughts and hope,

best regards,

tearose

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I feel like tearose, when she asks ,"You speak of being afraid of going out, of bad things happening, well, do they happen?"

If you are pushing yourself into risky situations its appropriate to have anxiety.

I have anxiety every time I stand still. I accept that ,and even find humor in it, but if I have anxiety when I stand still ,plus begin to lose mental clarity or feel sluggish then I start moving- sit or lay down. Standing still is a major trigger of NCS for me its no wonder it causes anxiety. And of course the anxiety may increase my HR which may kick in an NCS response. But in that case it is not a self fulfilling prophecy. Just to confuse things even further- I am not disputing the possibility of a self fulfilling prophecy. But it is a fact that emotions effect BP and HR. For me, what works is being realistic. Some days I need to accept that I should not do ................... Other days I can do it.

Also if I had a little one I would certainly show more caution. That also seems appropriate to me.

Take good care of yourself, tell your husband what you can do and what you can't do. He will respect your limitations if you respect them.

And when you take good care of yourself you won't need his sympathy.

Also you wrote "I don't tell them that sometimes I hope maybe one of these episodes would just kill me ." Don't minimize that. Find someone to tell that to, someone who knows where you live. A professional . Because I do think depression can open up under your feet and swallow you in an instant. THIS IS NOT TO SAY THAT IT WILL. This is to say BE SMART and have an escape route ready.

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