Need Advice

[seaboardbc]

Hi

I was diagnosed with pots about 10 years ago at the age of 40. I am (if there is one) a typical POTS patient. My symptoms include tachycardia, angina, fatgue, Raynaud's, dizziness, fainting, heat intolerance, joint pain, GI stuff, brain fog, visual disturbances and probably some things that i have forgotten to mention. I have good days and bad days, but I never have the kind of good days I had pre-POTS. I look very healthy, which on days when I am feeling particularily awful, I find to be a disadvantage. When I asked Dr. Grubb if I would ever have a normal life again, he said yes but I would need to change my definition of what was normal for me, which I did. I have lost friends because they don't understand. I can't work in the career that I had pre-POTS. However, I am dealing with my condition very well. My positive attitude has been a lifesaver for me.

My 24 yr old daughter was recently diagnosed with POTS. She has an appointment with Dr. Thompson next week. Currently her symptoms aren't being managed at all. On top of it all she is very depressed about her condition (understandable). We have very different personalities. My glass is always half full where her's is half empty (she says she is realistic and that I don't deal with things-- of course I disagree). My question is, I am the only one that she will talk to about how she is dealing with the POTS diagnosis (which isn't good). Of course I never say the right thing, I don't understand, "she has it worse" etc. She refuses to go for counseling. It is very difficult for me physically to give her the time she would like not to mention draining and non-productive to listen to her. I don't know what to do. I feel awful seeing my daughter suffer, I feel responsible because of genetics (although she doesn't blame me because I wasn't diagnosed until she was 14 yrs old), and as someone sufferring from POTS, it's hard for me to listen to, especially on days when I am not feeling well.

I would love some feedback from anyone out there that would be willing to share it with me.

Thanks

[McBlonde]

Wow, Bren... so sorry to hear that!! I can totally relate in this way. My daughter is your daughter's age. She has her own health issues (but not an autonomic disorder thank goodness!)..... Anyway, I am her "go to person" also... I am the one she wants to express herself with. I am the one that she wants to be able to dump all her sadness and feelings on.... She doesn't want to talk to anyone else. She "wants her mom to listen." That was fine before I was so sick. I had the ability to handle it. I don't any more. My body over-responds (as usual) causing me to have a cascade of symptoms. This is the hardest thing, but for your own health, she needs to be dumping all this on a counselor who has the ability to help her. You're going to probably have to insist (I did) but the alternative was to keep spiraling downward myself. I am so sorry you are going through this!!

Edited to add.... Dr. Thompson will be the PERFECT person to talk to her about this, imo!!

[seaboardbc]

McBlonde

Thanks for your feedback. It is good to hear from someone else in my shoes. I have insisted that she talk to a counselor and I have also shared with her that physically it is too much when she dumps on me. Her reasons for refusing to go include: she doesn't feel well enough to go, it's bad enough having POTS that she doesn't need to spend time talking about it (but she is talking about it to me), it won't do any good because she is sick and she isn't going to get better. When I distance myself from her ( because I just don't feel well enough to deal with it) she becomes more depressed and eventually finds a way to dump on me again. She is actually living with my brother 1200 miles away from me because we all (including my daughter) thought a change of environment might do her good. Nothing has changed and most days she calls me several times a day and night. When she was a teen she was diagnosed with depression but she seemed to be doing better for awhile until all of the POTS stuff (i even wonder if some of the mental health diagnosis was really POTS). My husband is great and he has really taken on a lot more responsibility to try to make things easier for me. When he tries to talk to her she rarely talks about her health. If he brings it up, she changes the subject. I don't know what to do.

[McBlonde]

Goodness!! I know exactly what you mean... Sometimes I wonder what I did "wrong" to have her only want to talk to me, but I don't know. I think it's also a little something to do with this current generation who seem to tell us a whole lot more than we ever talked to our parents. (This is an observation even in perfectly health moms and daughters our age) So, it's probably a whole lot of circumstances that have gotten y'all to this point. I can already hear Dr. Randy in my head though.... of what this pattern will eventually do to YOU. He's great. He will deal with the depression, too. Have y'all seen him before?

[seaboardbc]

I am so happy I started this topic. It helps so much talking to someone who understands. I had to laugh when I read what you wrote about the current generation sharing so much more than we ever did. I know exactly what you mean. We haven't seen Dr. Randy before. I live in Minneapolis so I see Dr. Grubb in Ohio. My daughter moved down to Alabama about a month after her diagnosis ( she was diagnosed in Minneapolis). Although her doctor in Minneapolis was able to make the diagnosis (i think because he was aware of my diagnosis and he knew about the tilt table test) he really didn't know how to manage it. I found Dr. Randy from this site. I watched the POTS video and he was great! My daughter is excited to see him because she feels like she is finally seeing a doctor that "gets it". If I were closer I would go to the appointment with her. I hope it goes well. I am afraid that if she talks about me she will make me sound like someone who doesn't get it rather than someone with dysautonomia. When I was diagnosed I went through all the stages you go through( denial etc) i just went through them really quick. I have always lived my life with you play the cards you are dealt the best that you can.

[HopeSprings]

Goodness, I'm sorry. This is a tough one. I can't imagine one of my children having this awful illness. I know how helpless I've felt in my own situation - not knowing what to do, where to turn next. I wouldn't know what to do for someone else with this condition and as a mother, you want to fix your children's problems. I also know how hard it is to truly be there for other people when you don't feel well yourself. I think your daughter is reaching out to you because you're her mother (I'm 39 and still want my mom sometimes) and because you have the condition, she feels you can relate to her. Her father isn't going to truly understand what this is like, so maybe that's why she doesn't discuss it as much with him. People in general do not understand - I've found it typically useless to try and have conversations with others about this. It can leave you feeling so isolated and alone. I relate to your daughter - I've had a really hard time dealing with this emotionally and it's hard for me to find much to be positive about with this. I do feel better talking with others who have the same illness though, people who really, really get it. Have you suggested she try online support? At the end of the day though - while all this talking and relating is helpful, I'd rather just feel better! Let's hope the Dr. she is seeing will be able to get her some relief from the symptoms.

[roxie]

This is a really tough situation. 

Im guessing one of the reasons she dumps in you is bc she feels like you understand.

I'm 27 (oh gosh, that's the firs time I've said that since I've  turned it) ok, Ive been struggling with the whole being sick & feeling super behind in life. I wasn't excited for my b-day at all. 

Anyways, I've had pots since I was 12 & been pretty much homebound the entire time. The person i talk to the most about it is my mom. she's healthy though.

I talk to her bc she's been there for me all the time. And she's the one that goes through things with me like taking me to dr's appointments and stuff. 

I've never had a friend I felt connected with or grasped my illness. So I talk to my mom. 

The funny thing here is she's the realistic one, she tells me I have to accept the things the way they are & work with them.  Sometimes I just want a hug & to be told it's going to be ok. That makes me hold back in things. 

My mom tends to rant to me about things around her,  she says it's bc i let her without interrupting or telling her to be quiet.  I just sit or lay there, sometimes I don't listen bc I don't feel well.  I think she knows that but she likes that I let her talk. Do you think your daughter wants you to interact with you ? Or does she just want to get it out?

I know talking on the phone is hard for me so someone calling me a few times a day wouldn't be easy at all. I wonder if she just wants to get it out if some of the times she could write it out? Has she even tried it, like keeping a journal & let her thoughts flow. 

I'm sorry I don't have much advice. I know the mother/daughter dynamic is hard.  Maybe you can find out what it is she wants from you. Is it the interaction with you OR is it letting out?

[issie]

I was raised in Alabama and Pensacola was my weekend stopping grounds. I love Destin - it is even better now. When I was younger it was just a two lane road with nothing there. You could camp on the side of the road in a little park that had shells for the gravel. The camp grounds now is wonderful. By the way, for others that want to know - Ft. Pickens is back open. They lost a good many of the trees in the main camp area. So, they opened up more camping spots. It's still nice - but, I think Destin has them beat. They also closed up all the Forts except for the main one that they still do tours in. I used to play all in those forts and underground caves of barracades. So much fun. Now, has some steel doors coverin up the entrance and you can't crawl around on the walls or guns any more. Too bad, we did some major exploring when we were younger there. Saw it again a few months ago.

I still have family down there. Was wondering if when I visit - if I were to need a doc. How accessible is Dr. Randy to see? Is there a waiting list or would he be open to a fast pop in?

*****Edit - I should have put this under Dr. Thompson thread ----sorry. Had just read that one too.

Issie

[McBlonde]

Issie, I'll answer you on the Dr. Thompson thread!