Dysthymia

[cberau]

Does anyone have any suggestions about how to get over depression stemming from this condition. Mostly because I have lost so much because of it as I'm sure you all have, but I just can't see any light at the end of the tunnel, I get no reward from anything I do, ever. I've gotten to the point where people tell me I just have to think positive, which to me are just useless words. I'm not religious, I never could be. I'm a very scientific person who operates on logic. If you were to compare my life against Maszlow's hierarchy of needs, I'm getting none of them. I have extensive education in social psychology and abnormal psychology, and have sought help with these mental issues, and even therapists after looking at my entire life situation tell me that my depression is rational given the facts of my situation and therefore couldn't really offer any help. This mainly makes it almost impossible to make it through every day because I don't see myself getting anything out of it. It's hard to think of anything that I could occupy my time with to take my mind off the situation because I feel so physically miserable all the time, therefore I attach a negative feeling to everything I do. I can't imagine anything I would want to do with myself after irreparably losing my career of flying with an absolute lifetime ban on flying due to any form of dysautonomia. After all the different types of treatment I have tried since being diagnosed, drug and non drug, I do not have any net improvement, and since I have severely hyperadrenergic pots, taking into account the gradual onset of it, I really don't have any hope of the condition improving outside of hopefully finding different treatment that manages it better. But the underlying condition as far as I can tell with the evidence I have will only get worse. Where do I go from here?

[angelloz]

Fair questions! But since you are asking these questions it shows you are hoping for answers. Without going into details I am in a similar situation. Some days are somewhat better than others. Do you have any days that are better than others? As you pointed out research occurs daily so there may be a new treatment on the horizon. Is there anything that you enjoy? Even a bit??? It is interesting because there are still things I think I should enjoy or look forward to I just don't feel the same joy. This is leading me to wonder if the feeling stem from physical issues that could be treated with medication. Have you tried anything in that arena? Do you feel worse than at the beginning?? Has anything improved?? Do you believe that your body could heal somewhat even if the odds are against it. I remember reading the Last Lecture, and Randy Pauch seems about as logical as anyone I know. He said , I keep hoping that I am the one in a million person that beats this illness because even if I am not , it is a better mindset to live each day. ( no quotations as this is not exact ). This makes me think that a logical person can still be very optimistic. I think this is where I fall short, I am not a naturally optimistic person so I think it would help me to work on this area. That is my two cents.

[dmjl27]

I wish I could talk with you face to face! I could hear your heart come through your message. I understand and can feel your desperation in each word.

I feel like I can relate to you probably more than most, because I've lost everything, too! I'm completely home-bound, bed-bound, and so sick I can barely lift my head off of the pillow on most days. My entire life (or at least the life I had made for myself) is gone. I'm a wife and mom of 3 children who need me. I cannot drive, leave my house, or even cook my own food. I guess you can agree, my life *****. Just 2 years ago I was an extremely, physically active mom who was even training for a tennis competition 5 times a week. Now, I can barely make it to the bathroom. I am telling you all of that...not for you to feel sorry for me, but so that you know I can RELATE..my words are not words of someone who has never walked a day in your shoes. (nothing is more difficult to me than to hear advice from those who have never taken a step in my world).

I will tell you, however, you and I are riddled with the memory of what our lives used to be. We are filled with limitations and surely nothing we planned on for our futures. This in itself, could literally eat us alive! It will...if we let it. However, my friend, I won't let this be 'my end story'. I can control at least that much. My disease has taken away all my control in life....but it cannot control my heart, my mind, or my will. I stopped focusing on all the things I can longer do, or all the things that I'm missing out on...and starting finding the things I CAN DO! I am forever stuck in a position where my legs must be elevated at all time. That means, I cannot even be in a normal wheel chair or ever sit in a chair like a normal person. However, I have worked very, very hard to focus on the things that I can still do! You'd be SHOCKED at what I've come up with! These are the things that have flooded my thought process day in and day out. I'd be lying if I said I don't sometimes fall into a self-pity...but it's only for a moment. I quickly change that mind set...because I have to! I won't let this cruel life take away my heart! Live or die, I will go out swinging! I have a progressive, degenerative form of autonomic failure. There is no 'getting better' in my new world. But you wouldn't know it to hear me talk. You can physically see what life has left me with, but you won't hear the defeat in my voice. I do know how hard this is...I do understand...but don't let this defeat you. With your education, intellect, and knowledge, you probably have so much you can offer right from where you are! You may find your mental focus will slowly begin to change. Mine did! Every time I give back to someone else in the smallest way, my disease becomes just a little smaller mentally each time. Be careful who you let speak into your life. I had to 'clean house' of all the well intentioned yet very misinformed people around me.

I encourage you, because I know how this mind set can ruin you completely. You still have so much 'living' you can do! And remember, this is coming from someone who is ACTUALLY walking in your shoes. You are in my thoughts today! My heart breaks with you! But just for a moment...because we have LIFE to LIVE!

[Joann]

I totally understand how awful it feels to not be able to do what you want and to feel like their is no hope. I battle this too. Like Melanie I was super active and athletic just two years ago and now I cannot do much of anything. But I do think we have to never say never. Have hope that you will be able to fly again.

I am not a normally optimistic nor pessimistic person, I would say I am a realist. One would have never thought we would be where we are today, we have to keep even a sliver of hope, that just as easily we could get better. I am hyper pots also, along with some other issues I am trying to get help with.

Someone said something to me that has made a huge difference. Think about that person you love the most (for me it is my little girl), now think if that person was battling what you are battling. Would you accept the care that you are receiving for them? For me it was no. I would have been calling and knocking down doors for her. That person said that is how you have to fight for yourself. You fight for yourself and for all of the loved ones who need you. If my daughter was sick I wouldn't care if I made the doctors mad for arguing or calling non stop, so now I have to try and do this for myself. My insurance restarts next week and I have to try and do this.

Also, my undergrad was in psychology and sociology. And I have to say that I don't think you have had very good therapists. Yes, they could agree with you that you have every right to be depressed but they shouldn't leave it at that. They should be helping you find a way to work thru it. I have seen a therapist and she agreed my problems are because of my physical problems and my reactions are normal for what I am having to deal with. But... then she said I am here to help you deal with this and just having someone to talk to can help at least a little. I know everyone says don't focus on what you can't do but on what you can do and honestly I am not especially good at this. Because really most of the things I want to do I can't. But if I think about what I can't do constantly I do find that it is worse. For me I try to spend some time not thinking about it and I know that is hard when you are feeling miserable and not able to do what you used to do to take you mind off your worries (for me I would run, clean or do errands when I had problems) but sometimes talking to someone about their day, watching a ball game with a friend, or even watching Ellen can at least get your mind/spirit a break. And if there is any way to help another it makes you feel great. And it can be something really simple. Maybe someone needs help creating a document on the computer? I helped someone create a document/chart and they were so happy and I felt great and it took my mind off my problems.

Any way, I hope you are feeling a little better. Maybe just knowing that many of us struggle with this too. OH, and my suggestions might not work for you everyone is different, I don't want you to feel I am telling you what to do, just suggestions that I am trying to use.

[cberau]

Thank you guys for your words. I just don't seem to have any fight left in me. I have felt absolutely miserable for at least 10 years now, didn't even search for treatment, but tried to hide it as best I could because I was a pilot and I couldn't let the FAA gestapo find out what was going on with me. I was forced into flying by my father who has an absolutely toxic personality, and I've been living alone for 4 years now for school, more than a thousand miles away from any family, which is kind of a good thing. But now I've gotten so bad, all my friends here want nothing to do with me, some have forgotten I'm even in town, and the rest have left town. I probably need to start discussing disability but it's just so ridiculous for me to comprehend that I need it at 23 years old. I have no idea what's going to happen to me after I get off my dad's insurance when I turn 26. I can't have a job right now, and government healthcare is absolute garbage (I have experience with it, I'm from New Zealand, the healthcare system there blows and it's supposed to be the best free-healthcare in the world). However, I am thinking about trying to get down to New Zealand simply because it is a welfare state and it would be easier to get help from the government (but healthcare is slow, more often than not too slow for cancer patients that don't have cash on hand). I can't stand the idea of living off taxpayers though, it just makes me feel icky inside. I mean after 10 years of hiding my pretty severe symptoms of the vomiting and flushing, sick all the time, I started getting a reputation with the flight training department that I was a very unreliable, unhealthy person, and that alone is enough to ruin your career. My career was doomed before I even got diagnosed. I have spent the last 4 years with no one immediately near me that is any more than an acquaintance, I have absolutely no one to call on. I live in a rather isolated town 100 miles north of Phoenix. I'm sure, being hyper pots, the amount of stress, dealing with such unforgiving people (aviation people are not my favorite), having to hide my illness (like really really hide it because aviation people watch) has just damaged me beyond repair. I went from never having a cavity until 3 years ago, and now almost all my teeth are rotted out because I vomit over 10 times a week. I haven't had any sort of romantic relationship since high school, nothing even remotely close. And I can't envision ever finding someone again in my wretched condition, especially as a male. And I really don't do well single. I still do function and get groceries, and housework etc, but only at the very last minute when I absolutely have to. I just want to have something to be excited about.

[Joann]

It really sounds like you need someone in your corner.Someone you can talk to. Honestly, I am seeing a therapist when I am physically able to get there and just having someone to even cry and complain to is a help.Also after I am able to get out some of my fears and frustrations, we then try to think of some things I can do that make a difference in my life. For instance, I listed the next 4 or 5 things I need to do in my medical search for answers and we gave me a time line to do them. For me this helps hold me accountable. Because when I get really bad, I also avoid things, like today, I need to get my papers ready for my appt for next week and I am on this site instead LOL. But I have given my self a timer when I must work on it for a set amount of time. Usually once I start, then I want to continue, it is just starting it!

It also sounds like the environment you are in is not good for you. What is keeping you there?

[cberau]

Well I did just find something positive about all this. My short term memory has seriously gotten horrible, and I just woke up thinking I had nothing in the house to eat for breakfast because I couldn't get myself to go grocery shopping. Well, actually I did last night, so I was surprised with breakfast stuff.

[cberau]

I'm leaving here soon, I had a job at the airport, but I recently got asked to resign. I'm living in a house my dad owns here, but we listed it for sale last week, and I am probably moving back to Chicago. I really don't want to go live with my dad, but I'll be closer to Dr. Barboi at Rush University, who so far I prefer to mayo.

[davecom]

Ya know there's a saying from a Beatles song... "The memories we have together are longer than the road ahead." That's how I think about me and the things I liked to do (tennis, traveling, world cuisines, romance, etc). Our situations ****. There's no sugar coating it. The depression from not being able to... function normally... that you're having IS normal. The comparisons of how it "could be worse" are not especially helpful.

BUT, I think the one thing everyone can agree on is in spite of how dire things seems you have to stay optimistic. And I see you don't think you have reason to, but I'm going to suggest to you that you do.

I can relate to you. I had a high flying career, a very serious relationship, independence, excitement, and everything a year ago. I'm just a few years older, but my downfall was more sudden. In the end we are relatively young. Research is advancing. New drugs are in clinical trials. Miracle recoveries (however un-logical that seems) do happen in almost all diseases - surely they have logical explanations, and yes they're 1 in a million, but the important part is they are real. It should give you something to grasp onto to keep you going if nothing else does.

I think we need to be realists too. I know I won't be in a boardroom tomorrow morning. And you know you won't be in a cockpit. But there is something productive you can do tomorrow morning, even if that's just working towards your recovery. Unless you've gone into the future and seen yourself in 5 years, I think you have a reason to have hope.

[cberau]

Ya know there's a saying from a Beatles song... "The memories we have together are longer than the road ahead." That's how I think about me and the things I liked to do (tennis, traveling, world cuisines, romance, etc). Our situations ****. There's no sugar coating it. The depression from not being able to... function normally... that you're having IS normal. The comparisons of how it "could be worse" are not especially helpful.

BUT, I think the one thing everyone can agree on is in spite of how dire things seems you have to stay optimistic. And I see you don't think you have reason to, but I'm going to suggest to you that you do.

I can relate to you. I had a high flying career, a very serious relationship, independence, excitement, and everything a year ago. I'm just a few years older, but my downfall was more sudden. In the end we are relatively young. Research is advancing. New drugs are in clinical trials. Miracle recoveries (however un-logical that seems) do happen in almost all diseases - surely they have logical explanations, and yes they're 1 in a million, but the important part is they are real. It should give you something to grasp onto to keep you going if nothing else does.

I think we need to be realists too. I know I won't be in a boardroom tomorrow morning. And you know you won't be in a cockpit. But there is something productive you can do tomorrow morning, even if that's just working towards your recovery. Unless you've gone into the future and seen yourself in 5 years, I think you have a reason to have hope.

Thanks. I just don't know how I'm going to get out of this debt from going to stupid ERAU (which was a bad decision, that I was pushed into, in and of itself). I'm so worried about health insurance come 3 years from now when I'm off my dad's insurance. Today, I did get requested for an interview at a Tesla dealership in Chicago, which could be a nice job for me, similar to selling stuff in an Apple store I guess (given the target customer), and I would probably be able to sit down enough. Well, I'm about to get started on my 2 hour drive to mayo to see Dr. Goodman again, thank you everyone, I am trying as hard as I can.

[Chaos]

While you have real reasons to be feeling down and depressed, there may also be a biochemical reason behind it as well. Since inflammatory cytokines keep coming up in the research as potential causes for a lot of the symptoms we have, I think it's interesting that inflammation is also coming up as a cause of some types of depression. http://blog.healclick.com/inflammation-chemical-depression/?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+HealClickBlog+%28Putting+Chronically+Ill+Patients+First%29%C2'>

That said, the reality is you still have to deal with what's going on for you today. The only way I can keep from going into a deep dark funk is to just keep focusing on the "right now". Can't worry too much about 3 years ahead. The only thing you have any control over is what you are doing in this moment. You can't change the past, you can't control what's going to happen in the future. The only part you can do anything about is to be aware of what's going on right now and make the best decisions you can at this moment. That will affect what happens in the future, sure, but in the long run, what happens in the future is out of any of our control. However, if you are truly aware "in the moment", I think you tend to make better decisions and the future ends up coming out better. Otherwise, you tend to make decisions on the fly, or get forced into things that you don't really want or aren't in your best interest and then the future isn't what you want at all.

Sounds like you are doing this by making decisions that will work better with your current limitations, moving to where you will have more support, etc. Those all sound like they'll be good ideas and will probably help with the feelings of depression you're having. When you don't feel so powerless to control things it certainly helps.

Sending you hugs!

[corina]

Good luck both on your trip as on your interview cbakl! Hope both will work out well for you!

[cberau]

Thanks, everyone. The trip went pretty well, got a lot more than I thought I would have covered with Dr. Goodman. He basically said to stop worrying about my paroxysmal hypertension, that it really isn't an issue. I'm fine with that. He took me off propranolol and onto nadolol. Other things I didn't expect, put me on mestinon during the day and clonidine at night time also. I hadn't thought of that combination, but it would make sense to get rid of my hot flashes and high pulse pressure supine, as I didn't do well with clonidine during the daytime. Plus 2 mg xanax which I already use to get to sleep, and he had no opposition to it, and I was out like a light last night, got a full 8 hours sleep. Only on my first dose of mestinon right now, certainly not feeling any ill effects, and body temperature is ok. Told me to stay on my double doses of H1 and H2 blockers, he didn't see any signs of mastocytosis, but said maybe MCAD is still an issue, we will evaluate MC stabilizers at a later date, lets just try and get me stabilized on a good cocktail of meds for now, but said yeah I will likely end up on gastrocrom, I agreed it's not my highest priority looking at the big picture, the chronic symptoms of hyper pots are the biggest issues for me right now. Apparently all my vitamin levels are healthy now, so I guess my prescription of D did the trick, I've never had any other deficiencies. He was concerned about my horribly low cortisol, even though I told him I was awake for 60 hours when I had my AM cortisol pulled, so he told me to get another test with a full night's rest. Still said I need a crapload more sodium, so I'll just keep popping those thermotabs like candy, they don't do anything bad to my stomach like regular salt tablets. He also allowed me back on a PPI prilosec in addition to H2 blocker because I have such horrid nausea and GERD, and I said the prilosec definitely worked for me, but for some reason some doctor wanted me off it but I can't remember who or why. He said my use of domperidone, and why I use it when I do (when I feel like I have motility issues) and the fact that it works could point to some GP happening, but he will see what the mestinon does for me in that area, and if I'm still needing my domperidone, then we can see a GI. Told me to buy compression gear, try elevating head of my bed again, when I went to buy bed risers last night I also got a gel cooling pillow, and I slept very well. I'm satisfied with the progress so far, definitely better than I was expecting given how my first consultation went with him. I think he definitely just waits to get as much information as he can before he starts talking.

[Chaos]

Glad your appointment went well. Glad you are getting some help. He has always been a very thoughtful practitioner in my experience.

[corina]

Happy for you cbakl! Mestinon really helped me temp wise, hope it will work for you too (on both the temp and GI issues)!

[kayjay]

I also went to mayo clinic (Rochester). When I do what they told me to do-I do better.

Nadolol took some adjustment but I think it's been a great medication. Compression and salt are important as well. My gi issues have resolved but I took myself completely off of gluten, I take a specific probiotic that helps me. If I can give you some advice (sorry I know you didn't ask) it would to be patient. I do sometimes forget to follow their advice. I don't have to take salt tabs but I do have to keep my sodium up. Dr. Fealey recommended V8 in the morning and keeping my water drinking in check. I'm always thirsty and drink too much water. When I limit my water and increase Gatorade, V8, and pedialyte (which I still don't know how to spell).

To encourage you, I am much better than I was when I was diagnosed. At that time I couldn't sleep without waking up in a puddle of sweat, to use the bathroom, and often in panic.

I still take sleep meds, but last night I didn't wake up at all. Usually these days I'm only up once or twice. I have gotten rammy and messed myself up. I read here about Wellbutrin for example (apparently dr. Grubb uses it) and got a pa at my ob/GYN's office to let me try it. It was pretty horrible. I'd like to be a hare- but in terms of my recovery I'm a tortoise.

Obviously we are not the same but it's seems like my nervous system heals very slowly.

[dmjl27]

glad your appointment went well...had u in my thoughts this week!