Putting The Pieces To The Puzzle Together

[DizzyGirls]

I'm trying to put my daughter's symptoms together and was wondering if anyone had these kinds of reactions.

My 19-year-old daughter has a problem when she is stressed, excited, even just looking forward to doing something remotely exciting, her body goes into overdrive and then it crashes about the time of the event that she was looking forward to. I've noticed that her symptoms get so much worse each time something eventful things in her life happens (it doesn't have to be major). Her body cannot pace itself. It sprints marathons and then crashes. (She's the hare in the tortoise and the hare.) Her body cannot do slow and steady. She then ends up with worse then normal vertigo, more severe orthostatic issues, extreme fatigue, and unrelenting migraines. This crash can set her back months. She is still trying to recover from her sister being in the hospital a week before Christmas and then having Christmas at our house. It's been 5 months! Every time these crashes happen, she never recovers to quite where she was before and it is taking her longer and longer to recover. She is mostly housebound at the moment. She only gets out to go to the doctor's or a rare trip to church. What are these episodes and how do we control them? I am so hesitant to tell her anything exciting or that would cause her a little stress because I don't want her body to overreact. She knows it does this and is frustrated because she can't control it. Is this Dysautonomia at its finest?

[Sunshinegirl]

I would say! I used to get the same way and then melt down and go into an unrelenting fatigue. Now I am older and I have learned to not get excited about anything...almost to the point of being a very boring person. Also, years of living with this sometimes ***** the joy out of many things. On the flip side, I have learned to not let things anger me so I am easy to be around.

Hyper-arousal can come in many forms. I cant even watch a semi stressful TV show, go to the movies, etc.... I find that I get super hot and then end up with hives. Laughing can leave me crying and have to sleep for hours.

Another thing is that if you don't get out much, the act of just going somewhere can cause anxiety about possibly getting too anxious or hot or whatever sets one off. I had a time when going to the park for a walk was too much excitement.

Yoga, breathing, neurofeedback...can all help. Planning is also key. This way you can reduce surprises. I never go out in traffic or to a big store.

[Katybug]

Yes, unfortunately, this sounds very familiar. I experience it in a milder form than what you describe but with all the same symptoms. I would bet that my age and life experience do make it a little easier to control, than if I were a teen.

I agree that meditative breathing and meditation itself can be very helpful with this. I had learned these tools back in college and started to use the breathing to help settle my system when it gets into overdrive. It is imperfect but it does help.

I'm sorry your daughter's have to go through any of this. It's difficult as an adult. I can't imagine what it is like as a teen.

[gjensen]

First I am sorry that your daughter has to experience this. It is tough.

It is not unusual for this to wax and wane, flare and remit. Often the flares are triggered. Stress is a major trigger.

Judging by the latest research (and many of our experiences), it could be expected that our nervous system to go into overdrive when stimulated. It is that way for me. I work hard to avoid especially stimulating situations, and in particular, stressful situations. After being overstimulated, or stressed for a time, I do crash. Those crashes do last for different lengths of time.

When I do crash, I try to maintain a certain level of activity because I can get stuck in that rut. I have to manage my lows to, but be careful. I can sink myself deeper. Pushing us is not helpful. We have to figure these limits and boundaries for ourselves. Some times it is time to just crash.

I do everything this darned illness will let me do. There are periods of time where that is very little. Then there are times that it is a little more.

It is important that we manage both the highs and the lows, staying as level as we can. She may need help moderating these highs. It could be that managing them will help her manage the lows. I could use some help myself, and I do reasonably well "holding it together". The best that I can do anyways.

I would talk to her doctor about what you are saying here, and discuss whether or not there is some help for her to manage this. For now, that is all we are doing. Managing this. Each of us need help with different things.

It is an unfortunate condition for a young woman to have.

[DizzyGirls]

Thank you all for your very heartful responses. My daughter and I so greatly appreciate you all sharing your own personal experiences so that we might benefit. This "crash" for her has been the longest and most intense that she has had. I do hope she pulls out of it. She desires to do things, but her symptoms get worse when she tries...very discouraging for her. She has such an upbeat personality that when she is frustrated, she is really frustrated. We have to switch PCPs soon (insurance reasons) and I'm very leary of anyone else treating her. Although, her current PCP is at the end of his rope, could be a change is what we need. You never know. She is a planner, as someone recommended planning helps. She handles situations much better when she can plan all the details. She does not do well with surprises. No chance for her system to assimilate all the details. We also avoid congested places. Too much stimulation!!! Causes everything to ramp up greatly! She would love to be on the forum herself to meet some of the teens, but using her iphone or computer is making her very dizzy as of late.

Thanks for your help!!

[db2504]

I am so sorry to hear that ur daughtet is suffering. I can feel fir you bc i too have a daughter that is trying her best to continue working and maintain a social life. Mine is 23 and we think she has had it most of her life. Not sure what caused it, but she was very sick as a baby. Anyway thank God she has you to be her advocate. I research as mucjh as I can and hope to find something that could help. Hang in there and stay positive.

[dizzyallie]

Unfortunately dizzy girls I relate so closely to you all. For me, with the horrid dizzy head, I have ME/CFS. I am as you describe. In constant states of boom and bust. I do the smallest of things, and I react badly after. That's CFS. Or I'm just bad from the get go. Thinking of you and your girls.

[DizzyGirls]

Hi dizzyallie,

Thanks for your thoughts...I know you can relate too. Someday maybe there will be some help for us all. Hard to keep positive all of the time. I see so many mothers like myself pouring over these forums in hope of some answers. If we can see these things, why can't the doctors and how come they don't know how to fix them. I think I've given them too much credit over the years. They are, after all, only human (no matter how smart!)

db2504,

So sorry you have a daughter, too, with chronic illness also. It's tough...trying to live life when it's such an effort. Most people don't get it.

Best wishes to you all!