So sad - any advice?

I find myself so incredibly sad all the time. I am always asking questions - “Why me?,” and I desperately miss my old life when I was healthy. After 2 years, the walking on a boat feeling is getting harder and harder to cope with. i just want to scream sometimes. This illness is luckily not life-threatening, but it is so life-altering. I just feel so sad, as I felt like I had my whole life ahead of me (I’m 32). I worked incredibly hard to earn my doctorate in psychology,and now I cannot even work. I know my negative thinking only makes things worse, but I just cannot help it. I’m also so angry and feel so jealous when I see people walking around with no effort - some ladies in high heals. I know those emotions are only hurting me and it is not good to be angry and jealous, but I am just so upset by this. I just really want a medication to work already. I am trying steroids for 1 week which are making me feel extremely weird. And, then next week I start Effexor, and will stay on the Verapamil. Tonight I am supposed to go to a dinner with my husband and his entire extended family, and I decided that I am not going. Besides having such difficulty walking, I feel so out of it when sitting at a table with a group of people. And, mostly, I just feel too sad. All I think about when I go to such occasions was that in years past, I was healthy. And, I look around and see everyone laughing and talking about how much they did in the past year, and I just feel sad. I just cannot get myself to go this year. I hate all of this. I can’t believe that in the past 2 years all I have done is go to doctors. I have not had one happy day. Sorry - I don’t want to get others down. I just wish i had a little bit more hope. do others feel this way, or are you just able to be thankful that this is not life-threatening?

We all have reasons to feel down im sure. The whole “think of the children in Africa” thing isnt really helping lol

I felt like you the first couple of months with this; thankfully Im able to do a lot of stuff now, but theres of course a great fear that it will get worse again without warning. I am 21 and have had trouble after trouble over the past 4 years; first I had to give up my dream of becoming a guitarist because I got serious inflammation in my lower-arms; couldnt use computer and not play guitar. Then my voice failed me as well, and the doctors still don’t know why that was, only that I was (and still am) zore and irritated in my throat for some reason. Now my brain seems to have failed me somewhat lol; so I know about all those feelings you describe. This last thing has also severed my connection with my parents and we will probably never see each other again (they abandoned me pretty much as far as Im concerned, and even though at least my mother realised what they were doing was wrong its too little, much too late).

But what can you do, life is tough…

I know that studies have been done in the ER, and the group that has the highest anxiety by a LONG SHOT, compared to very serious things like bleeding in the brain, broken back, etc. etc., is suprise suprise dizzy people. I know that no matter how I feel mentally, I will still have that lump of anxiety as I go to bed; its like my body just hates the motion.

What youre saying is true, jelaousy, overwhelming sadness and perhaps even a sense of doom(?), those are not constructive at all; but I guess not even a professor in psychology is immune to emotions. Its a very different thing to feel something and grasp it intellectually.

I think for those who are religious these challenges may be somewhat easier to handle. I believe this life is all you get and Ive already lost my youth to one illness after another; that for me is a wound that just wont heal. Then again, just imagine what it would feel like if one was paralysed; what horror… As you say, this isn’t life-threatening, just try not to extinguish hope, its very much needed.

I feel very much the same. I’m part-depressed, but not completely (mostly because I FORCE myself not to be - with my med cocktail, there is NO antidepressant I can take, NONE, and I can’t take therapy either - I just can’t go deeper or I’m screwed!). Music and web browsing is what keeps me going. Days when I can’t listen to music plain suck. Days where I don’t feel crap and can listen to music can certainly be livable. I just wish SO much that I could resume my guitar playing - yet another thing I can’t do because of MAV. It’s very literally easier for me to list what I can do than can’t.

Hi Lisa

I know exactly what you mean, I go through the same emotions regularly. In fact earlier this week I was feeling despair and couldn’t stop crying for about 4 days. But then I started to feel a bit better again and it lifted a little. In my darkest times, I allow myself some crying time and have a good sob to let it all out. Then I try and distract myself. I take it one day at a time and split the days into morning, afternoon and evening, marked out with my favourite TV programs (God how sad do I sound :slight_smile: ). If all else fails I get out my Pride and Prejudice DVD for a bit of “Mr Darcy action”, it always makes me forget my current predicament (even sadder I know!)

Be kind to yourself, its completely understandable you are feeling like this so don’t beat yourself up or try force yourself to feel better. You will get there eventually. You have loads to be hopeful about - you are trying a hugely successful drug next - Effexor, which will hopefully also ease these horrible feelings of despair.

Big hug

Becky x

Hi Lisa,

I’m so sorry you are feeling so sad. It is completely understandable. This is a very depressing condition. Losing so much of the control over your life is overwhelming. I think you should give the Effexor a shot. I was talking to my neurologist about it just the other day. He likes to use it with his patients who have both migraine and depression, obviously since it is an antidepressant. Maybe it will help you to feel better emotionally which in turn may help you to work your way out of this mess, or at least the worst of it. It sounds like you are at a low point with the disease. My thoughts are with you.

Take care,

Marci

Watching a mom run after her toddler, seeing a couple of women laughing and browsing through clothing at the mall, seeing a mom carrying one child and holding the hand of anolther so effortlessly while walking through the playground… these are the people I see everyday and I do stop and think how lucky they are. I do feel sad and as soon as I do I feel guilty as well. As bad as things can be at times for me I know that it could be worse and I need to count my blessings. Everytime I go to a place that I have not been to since becoming dizzy, I feel an overwhelming sense of loss for the healthy person I once was.

What has helped me through some of these thoughts and feelings - something you may be familiar with - ACT, acceptance and committment therapy, a form of cognitive behavioral therapy. It has helped me alot. I have learned, in a sense, to LIVE with the dizziness rather then just be dizzy and let life pass me by. I have had alot of therapy since getting sick and this is the only type that has actually helped me. Good luck with the combination of Effexor and Verapamil. I hope it is a winner for you.

Lisa,
I am really sorry that things are so rough right now. It’s hard to keep the faith when every day is a struggle. I really hope that the Effexor works for you. Cymbalta (also an SNRI) is really helping me. I am feeling better every day. It has also really helped with the anxiety part of this. I am way less scared and feel much more hopeful. I hope that once you start Effexor, you’ll start to see some gradual improvement. You’re a really strong person for having to go through this for two years. I always try to tell myself to look forward…not back. We do have our whole lives ahead of us and no matter what…things will be okay. I know that soon you will be feeling better too. Hang in there!!

Hi Lisa,

I’m currently on Effexor after seeing Dr. Hain and I feel hopeful that it’s going to help me. I feel the same way you do but we have to just try this drug and wish for the best. They say it helps in 80% of these cases.
I hope you are feeling better today and if you want to write me and ask me anything about my experience with Effexor you can.

Best,

Emma

Lisa -

Your post sounds exactly how I felt. I was so jealous and envious of others that were living their lives. I used to think, “How can all these moms take for granted being able to pick their children up at school!” I took that for granted once along with all the little daily things I used to do. I really think I was at the bottom as far down as I could possibly go. I started posting my feelings and everyone started bringing me back up. They made me realize these things -

  1. Don’t punish or be too hard on yourself for having this condition.
  2. **Certain adjustments can lessen this condition **- proper sleep, diet, less stress, proper med that works for you.
  3. ** It is okay to feel this way, everyone envies others who feel “normal”.**
  4. ** This too shall pass**. It may seem as if there is no light at the end of the tunnel, but there is. You will have good days again. I know you have had a terrible two years, but it can’t and won’t last forever.
  5. Do not push yourself. If you can’t go to that dinner, it is okay not too. I couldn’t sit at tables for a long time with people to eat dinner and such. You will be able to again. Trust me.
  6. I never ever thought I could get where I am today. i am not 100% everyday, but I am better and you will get there too.
  7. Never give up! Have faith and hope.

I feel so down sometimes yet. I went to the mall the other day and felt “spongewalking”. I felt so angry and frustrated. I thought to myself - do not go there with these negative emotions because it feeds the mav. Instead, I thought this too shall pass. I long for my “old” days too but unfortunately, i can’t go back and I can’t zoom forward. There is only the here and now. Try taking long warm baths and drinking herbal caffeine free warm teas. Allow yourself to relax and free your mind. I used to imagine myself doing the things I longed to do. I’d picture myself being “whole” again.

I hope this doesn’t sound like a bunch of crap. I just know exactly how you feel and I really want to help you. I am here for you, we all are. You are going to be okay. These medicines are going to work. You will gradually get better and this will all be behind you one day.

Nance

Hang in, Lisa. I am having a very bad day on vacation in Florida. We had company join us the past two days and I think the excitement and lack of sleep put me under. They all went into Key West this afternoon and I stayed back and tried to nap to no avail. The thing that keeps me going on days like this is that I know that I have had good days also and they will come back. I have also learned that I need to check my guilt at the door and not worry about disappointing others if I can do certain things - it is very tough and doesnt always work but I try. I am really hoping that your med regime brings some relief and there is a good day or two around the corner and hopefully many thereafter.

Hi Lisa,

I know what your feeling. In the first 5-10 years or so i felt very blue and sorry fory myself. I did not go out nearly as much…even lost a couple of friends. But as time goes on you begin to receive baby steps of improvement here and there so that is the positive part that things do get better. The question is…how much will we get better? Since 1992…i’ve made about 50-60% improvement but still far from 100%. But i’m thankful for the improvement that i have made.

Keep your chin up…things will improve but it certainly tests your patience. I hope you will be one of the lucky ones who receives a 100% improvement in a short time.

Joe

Thank you so very much for everyone’s kind words. It means the world to me that all of you understand. I wish we would all get better, though. Today is one of my worst days. I am assuming that the steroids are just making me feel strange on top of the usual dizzies, so I feel worse. I hate that I haven’t had one good day in 2 years. when we are better, we will greatly appreciate life!

Joe - glad to see that you made some improvement. I’m sorry you’ve been sick for so long.

Ben - Thank you. I hope you get some better days in FL.

MikaelHS - thank you for your kind words.

Tranquility - music sounds like a good distraction.

Becky - thanks so much. Yes, let’s chat tomorrow.

Marci - thanks. I sure hope this next drug helps

Kritlyn - ACT - hmmmm I actually haven’t heard of that, but sounds like it could be quite beneficial

Colleen - great to hear that you’re doing well on Cymbalta

Emma - thanks so much Emma. I would love if you can keep me posted about the Effexor. how long have you been on it? have you tried any drugs previously?

Nance - great list!

Hi Lisa,

I been on Topamax but couldn’t stand the side effects so I stopped taking it after two days. I been on Effexor for 3 weeks today.
I feel alright, no huge improvements but I’m still at a really low dose. I take 1/3 of 37.5 mg and it took me 3 weeks to get there.
I started out taking a 1/4 until I was ready to increase…But everyone is different you might be fine to start on a 1/3 right away.
Good luck. Keep me posted.

Best,

Emma

THanks for writing, Emma. I am planning on starting with 1/3 of 37.5. I am extremely drug sensitive. Glad you are tolerating it well. Hopefully, you will start seeing improvements on a higher dose.

Hi Lisa,

I just sat down here at the computer after a long talk with my husband and a lot of sobbing and saw your post …

I too am 32, and I have two months to finish my dissertation before the department has to let me go (the university’s cracking down on ABDs past their “reasonable years to graduation”). I’m not going to make it (I have 3 more chapters to turn in, and all of them are only half-finished). 3 years ago, I could totally have done it, even as behind as I am, and I desperately wish I hadn’t fooled around so much after my exams (I’m on year 5, so this is all my fault). Now I sit down to write and I can’t think straight, can’t remember what I was doing at the beginning of a sentence, can’t put together a cohesive argument… heck, I can barely finish any of the secondary literature articles I’m reading to get my brain back on track. I feel like such a horrible failure. If only I hadn’t taken so much “me” time after my exams, I’d have been done before this balance crap hit, and while my job options would still be crap, at least I would have finished this one thing… And yes, I should be trying to write right now instead of posting on forums. What’s worse is that my husband actually did push through and finish his PhD last year, go out on the job market and get a good job. So now he’s counting on me to hold up my half of things, and I’m stumbling around like a stupid drunk person, feeling sorry for myself and getting next to no work done. A friend is selling her house, but we can’t afford it because of me and my stupidity.

Anyhow, I understand that deep sadness and despair, and all I can say is to be proud of what you did achieve. So many people never make it that far, even those who try. You did. Yes, it’s unfair that you labored so hard and so long on your doctorate and may not even end up able to work, but… You know what? No ‘but’. That is really, really frustrating, and it’s part of what’s making me despair, too. So go ahead and feel sad if you need to. I wouldnt’ have gone to that dinner, either. Just don’t give up hope, because you’ve obviously overcome much more before this. Your life is not over, and I’m betting at some point you’ll be able to practice again. Cheers to you on finishing, and heck, if you did that, you’ll beat this too.

(and sorry for the rambling nature of this post – my head is throbbing from all the crying on my husband)

Hi Lisa,

Sorry I didn’t get to your post until now. Just wanted you to know that I’ve felt all of the things you described. What really hit me was when you said you look around and see others living their lives in a seemingly effortless manner (as an aside, I think that’s not as true as it seems … you soon find out that a lot of people have some issue that weighs them down). What used to drive me nuts and still does sometimes is when I walk past a pub full of people having beers and good laughs. I just can’t do that these days. Drinking beer in a loud pub would be a real killer. However, when I was on a higher dose of Cipramil I was sometimes able to get away with doing just that which shows that when you find a suitable med, you’ll reclaim much of what you feel you have lost. I’m also thinking that you probably have some low level depression happening what with the chronic nature of this garbage and the feelings of loss you have at the moment. I really think you’ll see some dramatic improvements on Effexor. My fingers are crossed for you that it will both stop the lousy symptoms plus lift you out of the hole.

Hang in there … we’re all here to help any time.

Scott :slight_smile:

WobblyJEss - thank you so much for your post. I am so sorry about being unable to finish your dissertation. I couldn’t imagine doing anything like that feeling as we do. That is such a shame. Hindsight certainly is 20/20, but you would never have known any of this when you decided to take a little break. I’m sure it was well deserved. I, too, cry to my husband incessantly. He feels like crying is very unproductive and just makes me worst, but I cannot help it because I am so sad. I wish you all the best. Are you on any meds now?

Scott- thanks so much. You’re right. If anything i should have learned that you NEVER know what others have going on. I also hope the Effexor works.

Hey Lisa -

I am so sorry you are down in the dumps. Like all the others who have posted here, I will also say, “We’ve all been there.” I am 40 and have had this 19 months now and had no diagnosis until I’d had it for 11 months. I went on a far fetched ride trying to treat this which ended in a terrible emotional crash in January. I was put on Paxil (a med usually not given much credit for treating MAV) and at 25mg I started feeling better and better. I even had days where I felt 95% and was outside enjoying the sunshine and my children. I was running with amazing energy and chasing them and laughing. It was amazing to feel that way. Unfortunately, I cannot tolerate the GI side effects that I experienced (I have always had IBS with constipation and this worsened it for me), so now I’m on 5mg Paxil and 5mg Lexapro and doing the switchover to Lexapro by the end of next week. I am holding out hope that Lexapro will help my Mav as well. If it does not do enough, I will probably add Propranolol or Verapamil. We’ll see what happens.

But what this has given me is hope. Hope that I will get well. Scott said to me all fall, “You will feel better - you just haven’t found the right combo for you.” i DID NOT believe him. But he was right. I can feel better. I had, up until Paxil and finding Nance on here, believed all the bad stories. All the worst case scenarios. Julie’s story was going to be my story. I was going to have this for 12 years and end up house bound and bed ridden. I DO NOT believe that anymore. I have spoken to a woman here in Nashville TN where I live, and she got it around the same age as me. She had it for 2 or 2 and a half years, during which time she barely left her house for 6 months, and she had to quit her job. But it just went away. She’s fine now. Nance knows 2 women to whom this also happened. When I saw Dr. Hain and Dr. Cherchi, they made it sound like this too was a condition that goes away. I have hope that this could happen to me too. I also just have hope that I will find a way to manage this.

I also try to be proud of all that I have been able to do during this period. I was in the habit for a while where, before bed, I would make a list of all that I did that day no matter how insignificant it might be to someone else. I would write, “Got out of bed; made breakfast for my kids; dressed them for school; took a shower and dressed myself; got kids to school; did a load of laundry; enjoyed reading the kids a book; got the kids a snack; really listened to my husband…etc.” I just had to celebrate the small stuff and when I did, I found more little moments. “I was able to receive compassion for someone else. I was able to appreciate a beautiful flower or a piece of music.” I had to cling to the moments.

Something Mikael said about being religious… I have always been a seeker. I go to church and ask a lot of questions. I’ve always thought of myself as a Buddhist Christian in a way. This illness has given me a longing to know God in a different way because the “why have you done this to me” was getting me nowhere. But I DO NOT have this, “This is God’s will so I need to accept it,” attitude. That wouldn’t help me at all. What gift has come out of this though for me, has been witnessing the compassion and love that others are capable of giving. I’ve had people reach out to me on this forum. People who have written comforting and encouraging words to me late in the night when I really thought I just couldn’t hang on anymore. I have had friends listen when I cried. I have had strangers tell me they were praying for me. And while I haven’t had the miracle performed on me (one of those fantasy “poof you are well moments” that I would like to have performed, the miracle to me has been being able to feel and receive love from others. To see the value of a supportive community. To me that is God working in the world. That to me has been the gift - learning to be open to other’s love and compassion. I also have reached out to others I know with chronic conditions and listened to how they live. I took a woman from church who has had MS for 19 years during which time she raised a son, and I asked her about her life. I was able to understand her in a way that I never could have prior to having this challenge in my life.

Hope that wasn’t a crazy tangent. Just thoughts I have been having lately. Trying to find what I’m being given during a time when it feels like I’ve lost so much. If nothing else comes from this, I know how lucky a person is to have their health and I will never take it for granted again.

I hope for all of us here. I pray for all people who are suffering from something chronic. It’s a bitch isn’t it? And it’s sure isn’t how I thought life would be. But is life ever???

Molly

Lisa, I can so relate to what you are saying. I wish there were magic words to make it all go away. I trust and hope the effexor will help with both the MAV and depression. I am on no meds other than diuretic and I so wish I could get a doctor to prescribe effexor or some other anti-d for me so I could kill two birds with one stone.

This is truly one of the most disabling diseases there is and people don’t understand how bad it is unless they have experienced it. We look “normal” but sure don’t feel normal. I also miss so much the days I could just hop into a car with friends and go out to eat or go shopping or just riding around. It makes me feel so sad to know I can’t do that any more and can’t even explain to people why I can’t. And the uncertainty of when or where is my next vertigo attack going to happen is on my mind all the time. I had a haircut appt this morning and had to take a meclizine before going so I wouldn’t get sick when he raised my chair 3 inches.

I read the MM boards a lot and most everyone there seems so accepting of this. I don’t see how I will ever get to that point. (I hope I haven’t depressed you even more.)

Molly - what you said wasn’t tangential at all. It makes so much sense. It really lifted my spirits. I do believe that I am a much better person for this. That being said, I just want it to go already. I have learned lessons that I would have never have learned otherwise. I will never take life for granted again. I do, though, feel like I learned important lessons and am ready to be better and move on now. I am not religious. But, I can certainly see how religion can help a great deal.

Bookworm - you didn’t depress me more at all. thanks for your kind words!!! means a lot to me…