I was diagnosed with dys about 6 weeks ago and went through autonomic testing, completely neurological work-up, etc. I won't have my followup appointment until September sometime, so in the meantime I'm not clear as to what type of dys I have. I believe it's either pure autonomic failure, autonomic neuropathy, or familial dys, because those are some terms he threw out over the phone after my autonomic testing results came back, but I do know it's not POTS. I think that's part of it because I have low blood pressure and I'm on meds for it, but I think it's a bit more than that. It's very confusing. I have problems with dizziness, which come and go, but the worst is muscle weakness and muscle fatigue/heaviness in arms, hands, and legs. Also pins and needles everywhere plus GI problems.

I had been waiting for some blood test results, hoping that they would find an underlying cause for this, but they all turned up fine, except for one a.m. cortisol level which was off. They repeated it and it was fine, but then the p.m. cortisol was low. So I guess it's still a possibility that something is awry with the adrenals, causing or exacerbating the dys.

I feel like my life has come to a standstill. The simplest things I used to enjoy or take for granted are very difficult now, and I am constantly weighing, "can I do this"? "if I do this, will I pay for it tomorrow?" I have three young children and as much as I try to act normal, they know something is wrong. My 8-year-old daughter asked me this morning if I was going to die.

I am an elementary music teacher and I don't know how I will manage at work starting on Aug. 19th. I fear that even if I can make it through the days, I will come home totally depleted with nothing left for my family. However, my husband is self-employed and we need the insurance benefits. I am so depressed, and frankly, I'm angry.

Yesterday and today I had these episodes where I totally flipped out and got really upset with my brother and my husband. Granted, my brother was being a jerk, and husband was being insensitive, but never in my life have I become so emotional. My whole body started shaking and I couldn't stop crying. I thought I was having a seizure or that I was going to have a heart attack. Then I felt so awful for becoming so upset, but I felt like I couldn't control myself. Has anyone else been through this?

I just need someone who understands.

Thanks.
Heidi

Hi Heidi - I understand and so do the other kind people on this site. Living with this is scary and it really stinks. It's very hard to accept limitations when we have lived such full lives. Especially when we are struck out of the blue.

There is hope but sometimes there is alot of trial and error in figuring out what will work for you. Each of us is different. It's really important to start recognizing what your triggers are and how you respond. I know it's super frustrating because you are on a time restriction because you are about to start school. Did you have a tilt test during your autonomic testing? That is the most definitive way to diagnose dysautonomia and help determine what is going on. In my case, a electrophysiologist cardiologist (EP cardio) was who helped me the most. For others, it may be a neurologist. What type of Dr. are you seeing? It sounds like you are dealing with someone who knows something about dys.

I too have gone through all the emotions you mentioned (anger, fear, depression) and still do at times. It's a roller coaster ride for all of us - good days and bad days. We are all just working towards a time when the good are far more than the bad. I know I haven't really given you any great words of advice but just wanted you to know that I understand and you are not alone at all. I am fortunate to have a wonderful husband but even he cannot completely get it as hard as he tries. The people on this forum do. All the best to you.....

heidianne,
I was a teacher too, and just had my boys gather all of my things out of my classroom. I am on disability retirement. I miss having all of that energy to teach all day and try new things. Now, I have a hard time just doing little things at home. Grocery shopping takes days of planning, because I have to make sure nothing is going on for at least 2-3 days. One day to rest, one to shop, and then rest afterwards. I have learned to accept this new "normal", but I still have hope that the quality of my life will improve. I get depressed when I can't do certain things for my family. I used to cook gourmet meals, now we eat frozen foods.

I tried to get my principal to take some of the burden off of me my last year of teaching, but he wouldn't. Now, I'm burned out.

I believe when we find out we have dysautonomia we immediately need to begin a TEACHING process for our family and friends. At least the ones who care and will listen. We can't blame them for what they don't know. We need to explain that we don't know everything about this either, nobody does. However, give them periodic updates and introduce more and more infomation to them.

Most of our loved ones are not going to seek out information on their own. We have to make it easy (and it's not) for them to understand. I agree that it is scary for a child to see a parent change before their eyes. And the only answer I know is open, honest communication about our health. Neuro science for kids has a paper on the ANS that's easy to understsand. I'll try to send a link later, or you can do a search and look for it.

At times, I've made promises to my family that I can't keep. I've also made lots of plans that could not be kept. Now when I say I'm going to do something, my husband says, "Well, we'll wait and see what happens. If you can do it, fine, and if not we'll make other arrangements." I'm not used to living with "what ifs," and now my whole life has become a "what if." My motto has always been, PLAN, PLAN, PLAN! That's impossible now!

Heidianne, you're a Teacher (and I'm sure a very good one). TEACH your family about your health conditions and the effects that it will have on those you love. Design a LESSON PLAN for them, which may lessen this burden for them and you. Schedule a family meeting now! Above all, make sure your family know it's not going to be easy for you to be able to work, and they will have to help you through this so you can be there for them.

I think we need a good GROUP THERAPIST for addressing all these issues that we encounter!
Oh, I forgot, that's what the forum is for!

hi and welcome.
so sorry to hear about your diagnosis. as you can see, we all completely understand the depression and anger you are experiencing. like most have said, it is important to learn your triggers and what helps to alleviate them. though i wish i could say this will restore you to be able to continue on with your previous life, i can't. i have made a lot of changes to my life, and am now trying to appreciate the good things that have come from them.
i am sorry to hear that your children and other members of your family are having a difficult time understanding your condition. what is especially hard is that we can appear exactly the same physically. i am 24 years old, and so appear capable of doing the things that i once loved, like hiking and biking. my friends and family don't understand when i decline in participating in these kinds of activities, and i often feel like a "debbie downer." but, at the same time, i am grateful to not appear sickly, so i can really appreciate the times that i feel decently.
welcome to the board. you will find a ton of support here.

welcome - the great thing about the people on this forum is that we all understand and support each other. anything you are going through, it is most likely that others are going through similar issues.

i would recommend you talk with your kids honestly about what is wrong so they understand and can alleviate the fear of the unknown.

the emotional rollercoaster is one of the worst things with these illnesses. especially if your adrenals are off, they could be messing up your ability to manage your emotions.

my biggest issues are the exhaustion, easy shortness of breath, and the brain fog. I don't get lightheaded or dizzy often and have never fainted. but the exhaustion and shortness of breath and brain fog are a huge negative impact on my life, which then leads to the emotional frustrations, etc.

again - welcome - we are here to listen and understand

Thanks so much to both of you. It's helpful to know that others are experiencing similar things. Nicole - was it difficult getting retirement? Do you have the health insurance benefits too?

Heidi

Hi heidianne,

Welcome. This is going to be a huge adjustment for you and I also found that I have to 'adjust' on a daily basis. I have gone past crying on one occasion. I actually howled like a wounded animal a couple of times about this bloody 'junk.'

At other times I do better emotionally. Everyone has posted good advice already and said most of the things I would have said. Stick with us. This can be a real rollercoaster ride (but not necessarily all the time) and we are great therapy for each other.

Just wish we could all meet face to face.

Hi and welcome.

I'm in Wisconsin too and there is a good hospital here in the Milwaukee area. Maybe this is where you were diagnosed? Anyway Dr. Barboi is the Neurologist who is specializing in autonomic dysfunction if you need/want a second opinion. Here's the link:
http://www.froedtert.com/home.aspx
There is also a support group that meets every other month (next oneis in Sept). It is listed on the same website.

Shoot me a private email if you ever need to chat.

Thank you to everyone for your responses. It helps SO much to know there are others out there, although I find it so sad.

Mary Daly - I do see Dr. Barboi, and not only is he supposed to be "THE MAN" in this area but he is so kind and approachable. My only frustration is that I had autonomic testing on June 19th, and I won't see him for a follow-up until September sometime. They won't even give me an appointment date until August - Kathy his secretary told me that I am on his list for followups and she will call me to give me my appointment date. It's a long time to wait to go over everything so that I have a clear picture of what is going on. I think not really understanding is also adding to my frustrations.

When we spoke on the phone he told me my tilt table test was positive (almost fainted after 15 minutes so they stopped), my sweat test was positive (didn't sweat from the waist down), and he explained how this relates to my symptoms. He also said the only thing I can do for the muscle weakness/fatigue is strict rest following periods of activity. I have learned from experience that even an hour on the couch can recharge my batteries, but I just don't understand why there isn't more I can do. I am facing the possibility of going on disability and I HATE it. I love teaching, and the kids, and my own 3 kids go to the same school, so I got to see them all the time. It's very hard. Anyway, I was thinking of calling Cedric and seeing if there is any way they can get me in before I have to go back to work so that we can talk about my options/treatment plan, etc. Do you think they will be accommodating?

Thanks for the information about the support group. I may go to the next meeting. Where do you live?

Heidi

Heidianne, may I suggest (if you haven't already done so) that you request all copies of your test results and reports on all testing and procedures for you to use to do some research on your own while waiting for your long-in-the-future appt?

One thing I find that helps me is to stay on top of all the findings of my tests (and I research any abnormal findings extensively) so I can actually ask informed questions of my drs when I go in to see them. Often the doc is rushed and there is usually very little time allotted for each pt. If you can get your questions/concerns written down in a concise matter it will help a lot, cause if you're like me you'll experience an immediate brain f**t as soon as you walk into his office. (I try to bring my husband who is medically trained with me on every appt so he can talk medical-ese with the doc as well but I just happen to be very fortunate to have this at my disposal --kind of like having a lawyer in the family if you're a career criminal ).

Anyway, I hope you can get your feet back under you again soon after being blindsided by this difficult (and that's putting pretty nicely) syndrome. Hanginthere and keep coming back to this forum with your questions or concerns.

Hi Heidianne,

I am sorry you are feeling so poorly and only have half an answer so far. I think Mcaimless has a great idea about you getting records and so on. I agree with the others that you need to educate your family as you learn, also. Educating yourself and your family will help you to deal better, too.

Do they have a cancellation list that maybe they can put you on? It's worth finding out.

I am glad to hear you got a great dr. I hope your treatment will make a real improvement.

hugs

Thanks again to all of you for your words of encouragement. Mcaimless, what a great idea, I always feel better when I have a cognitive grasp on things, so I think I shall call tomorrow and request that information.

Also I did think of calling about the waiting list. Thanks for the reminder. yes, I do feel fortunate to have a good neurologist, albeit a busy one.

Take care everyone,
Heidianne

Heidianne,
I taught for 15 years and then had to my accumulated days and took a sabbatical, which both still counted as my 16th year of teaching. I knew I couldn't work anymore, so my only option was disability retirement. My principal, two doctors (one had to be a specialist), and I had to fill out some forms and give that, my medical records (3 inches thick), and copies of personal things to the school board. I was told I may have to see one of their doctors and it could take months. It took a few weeks with no questions. They take my insurance out of that check which is great because I couldn't get the help I needed without it.

Nicolep,
I'm not sure how it would work for me with disability, if I have to do that. I'm in a private school and haven't been there very long. That is one of my goals this week - finding out what I can about my benefits.

Part of me thinks I should try to go back and just see what happens. Another part of me says, "are you crazy?" At times I can barely walk up the stairs.

I've been reading so many of these posts and it's amazing how devastating this illness is. Why isn't more known about it? In some ways, I think it's worse than MS because at least the general public understands what that is, there is treatment for it, and although it can be very debilitating if you have the serious type, many people with MS live pretty healthy, productive lives. I know someone who has MS and does a triathalon every summer (she walks the running portion). Sometimes I think if I have to change professions (because I'm not the kind of person who can do nothing), I could make it my work to make this disease known to the general public. To put it out there. I don't know, I'm just thinking out loud. I just STILL can't get over how this completely "obscure" disease can be so devastating. Even many internists have never heard of it. CRAZY! All that is also part of the stress of the disease. When no one understands it, or has heard of it, it makes it even more frustrating. When you tell someone, "I have autonomic dysfunction", and you explain it to them as best you can, and they look at you like a deer in the headlights, it's hard and makes you feel even more alienated.

Anyway, time for bed, thank you again. Take care,

Heidianne