Musings About Relapses

[MomtoGiuliana]

I wish I understood why I get relapses. I am not sure I see any connection to increases in stress or activity as a trigger for me. My last relapse was in September after a very busy and stressful month. However, I am now in another relapse and I don?t see a clear connection?change in weather? I do see patterns in the course of my relapses, now that I have gone through so many, after initially getting better in 2003. It starts with a few days of more frequent heart palpitations and faster standing heart rate. Then progresses to episodes of feeling off-balance and a little light-headed. Then I start having trouble sleeping and feel wired and tired. Then I get heavy feelings in my chest when standing or walking. Then the muscle weakness, heaviness, pains and malaise kicks in. Generally after about a week-10 days of feeling badly with all these symptoms, I spring back to my ?normal? low level symptoms. I know I am very fortunate so far with this. I find this spiraling effect (symptom progression) interesting and wonder what it is that is going on in my body!

I have to give a seminar at a local university today. Ugh.

As always, I am thinking of everyone here at DINET, and deeply appreciate the support we can give each other.

[yogini]

Katherine,

I can totally relate to how you are feeling. Actually I think my relapses are usually related to a specific cause. But when you're doing "relatively well" for someone with POTS, a relapse is a scary reminder. It always brings me back to how I felt when I first got sick and brings back fears of getting worse. Anyway, hang in there, rest up and hopefully you'll be back to "normal" soon...

-Rita

[pat57]

You mentioned that you start having trouble sleeping. I think a good nights sleep is necessary for us.

It is for me.

[MomtoGiuliana]

Thanks for your thoughts...this afternoon I had to walk across campus carrying a very heavy lap top and projector and wasn't sure I would make it! But I managed.

Yes, sleep is essential and for some reason I get insomnia when I get a flare up, or at least do not sleep well.

Exactly, a relapse is a scary reminder and always in the back of my mind I am wondering--what will happen this time--will I get better? when?

Now I need to get in bed!

[Guest tearose]

Dear one, I hear you. If only we knew what the triggers were, we could try to avoid or minimize the spiral effect.

It seems to me, once I realize I am sliding into a danger zone it is better to try to drastically cut back on activities and to slow down and get my footing first. Rather than using my energy to figure out how I got there, first I try to get stable.

I hope you are having a better day.

Are you able to sit when you speak at a seminar? Can you use a tote with wheels to carry some of your heavy things?

Warm healing wishes for better days very soon.

best regards,

tearose

[MomtoGiuliana]

Hi Tea...thanks for responding. I need to get a tote with wheels. Every time I go through this I realize I need to set things up to make my life easier. I'm not good at making my needs known. Since most of the time I can either appear or actually be functional, I feel very uncomfortable admitting I need accomodations made. I have not told most people at work that I have this condition or how it can affect me; the people who do know only have a vague idea. How do you explain to a classroom of people you don't know that you need to sit down?

I feel better today.

[morgan617]

I really think I am just much worse at certain times of the year. Spring, and late fall into winter, but I can't say why. If mine was related to just stress, I'd be in bed and never get out. Last year was bad and this one has started out awful. I do really well through the strss, it's after that I collapse. Really, I'm not sure I've had a rhyme or reason to mine...but I muse about it a lot...actually I tend to sulk about it..LOL morgan

[MomtoGiuliana]

Stress doesn't seem to be a trigger for me either as I can be under major stress and not have a significant change in symptoms. Maybe it is a delayed response for me tho...It definitely does not help. I'm sorry things have been so stressful in the past year+ for you morgan.

[mom4cem]

It is a horrible reminder that we can go back to where we started, even if only for a short time. I find many of my relapses are delayed responses. I can handle stress and be doing many many things, and coping well, and when it all ends, and things go back to my kind of normal for here, then I notice the symptoms start.

Keep on chugging through, you'll get through this relapse too!!

[Maxine]

Maybe it has something to do with your hashemotos and hormone fluctuations.

Stress can still affect you, even though you may not feel it at the time.

I agree with the delayed response, as my response to stress is usually delayed also.

Morgan, I also do OK DURING the stress---then major crash after. Sometimes I get lucky, and it's a milder short living crash.

Hopefully, you'll be back to your normal soon.

HUGS,

Maxine :0)

[Megan]

My mom and I use the phrase "maybe it's just time" a lot. As in, it's been a while since I've had a relapse, and maybe it's just one of those things that has to happen every so often, to get it out of my system. Usually there's a trigger that only actually triggers something half of the time. But anyway...while that may not be a good medical explanation, it's one I do believe. Even if I do everything I'm supposed to do perfectly, I'm still going to have symptoms. You're in my thoughts.

Meg