How do you spend your days - so sad!

Specific Illnesses & Conditions VM/MAV
1

I am so very depressed from this illness. When people are depressed it is very helpful to motivate yourself to do things, etc., however, I am not able to do anything due to this condition. I have suffered from terrible disequilibrium for 2 years, which make it so difficult to walk. But, only during the last year, have my symptoms while sitting increased dramatically. I have tremendous “dizziness in my head.” It is almost like my brain cannot process visual information. This makes it VERY difficult to watch TV, look on the internet (although I’m doing it now w/ much trouble), read, etc. With being unable to go outside, socialize with anyone even inside (I cannot focus on conversations at all), inability to read, watch TV, etc., there leaves pretty much nothing for me to do. Are others this disabled? How do you spend your time?

Just to note, yesterday, my parents came over, and since I just moved they were helpful in putting some of our stuff away, etc. My husband and parents were doing all this work, and I couldn’t do anything at all. I even reached a point where sitting on the couch made me way too sick, and I ended up lying in bed. It is just so very depressing. When I thought things couldn’t get worse yesterday I experienced a migraine with aura, which only made me dizzies worse, and then I had terrible head pain. I sure, though, do miss the days when I just had head pain and none of these terrible MAV sxs. On Friday, my sister-in-law came over with my 4-year-old niece, and I couldn’t hold a conversation at all and of course couldn’t play with my niece. It was so nice of them to visit, but I felt so sad during and after the visit. When I am forced to interact with people it further highlights just how sick I am, and just makes me more sad. I am so sorry to complain. I just don’t know how much of this I can take. Day in and day out I feel like I have no joy whatsoever. I just want my life back. It was such a wonderful life. I am so sorry. Don’t mean to get others more down. Just thought I would write to people that I know understand.

2

Hi Lisa, I completely understand and feel for you. I have those horrible days for sure but at least I do have some days that I can function a lot better, still not near normal though. I am having a bad day today and my reactive hypoglycemia has been acting up the past several days, which makes me feel even worse. The toughest part for me is dealing with my job and my family with all of this. I miss so many functions and activities with my kids and I have become very short-tempered and not a whole lot of fun to be around. I think all we can do is continue to try the meds and otherwise make changes in our lives to improve our chances of feeling better. I re-started topamax on friday in an attempt to feel like I gave it a decent trial. I know you are seeing Dr. Rauch soon and I hope that he instills confidence that his plan will provide at least some relief. Ben

3

Thank you so much, Ben. I wish you lots of luck with restarting the med. Just hate the chronic nature of this illness. I keep on thinking that I have not felt healthy in over 2 years. I, unfortunately, just never get a break with this. Please let us know how the topamax goes for you. You deserve to enjoy your time with your family again and you WILL!!

4

Hey Lisa,

What are meds are you taking right now???I feel really bad for you.
I know how you feel. I have to say I feel a little better on Celexa. My headaches are more or less under control and I have much more energy.(it’s nice not to be so tired all the time) I’m still waiting for the dizziness to get better. I felt pretty ok yesterday though, the ground wasn’t moving as much and I felt fine when I was sitting down, however when I got tired towards the night I felt much more dizzy again… I guess it will take awhile for the Celexa to work. I’m trying to get to 30 mg, I’m now on 25 mg.
Maybe you should give it a try. It’s very mild in side effects…Just a thought. Maybe ask your doctor?

Best,

Emma

5

Lisa I also know just how you feel. I see others going out with friends, going to the beach, having a few drinks and I get very jealous. I used to be a spontaneous person and loved to keep busy, go anywhere, do anything. But now I hate making plans for the future because I don’t know how I will feel when the time comes. I just decided I was tired of sitting on the sidelines of life. I starting making plans and if I don’t feel up to going when the time comes, I cancel out. But at least making plans to move on with my life makes me feel less anxious. I think move than the dizziness of MAV is the anxiety it creates. I an nowhere near the person I was 3 years ago, but I refuse to sit on the couch and do nothing. The more I go out and do things the more I know I can do them. Actually my husband and I went away one weekend and we when to a restaurant for breakfast, all of a sudden the imbalance came over me. I couldn’t sit at the table without holding on to it with both hands but I survived. I ate as best I could went back to the hotel, laid down and took a nap and was ok when I woke up. The point is where ever you are, what ever you are doing, you will find a way to tolerate how you are feeling.
I hope Dr. Rauch gives you some encouraging news soon. But keep remembering you will get better and move on with your life. But MAV is a life time condition with flare ups and we all need to learn how to life with it and tolerate it.

6

Emma - I am not on meds now. I got very jaded after trying meds for so long, but I know that I will not get better without meds. I see Dr. Rauch on the 11. I am so glad to hear that the celexa is helping a little. I hope that it continues to help even more. I know I can tolerate an SSRI much better than other meds, but know that Dr. Rauch recommends nortriptyline. I am so confused about SSRIs. Dr. Newmam put me on Zoloft when I was seeing him, but I then saw Dr. Buchholtz who said that SSRIs do not help migraines and can make them worse. Subsequently, I found this website and discovered that several doctors do prescribe SSRIs. Unfortunately, I wasn’t on Zoloft long enough to see if it would be helpful.

Joanmac - I definitely understand what you mean about pushing yourself to do things. I try sometimes, but I end up feeling even more depressed as it is nearly impossible for me to do anything and I feel so very sick when I do. I wish getting out lifted my spirits, but it doesn’t at all since I cannot function. Maybe as I improve a bit in the future I can engage in more activities. During the first year with this I worked as a clinical psychologist, but I sadly had to take disability as my symptoms have just progressed since then and seem to be progressing with each passing day.

7

Hi Lisa,
My life is not so much different than yours, although I am able to exercise a bit, use the computer, and watch TV. I too always get so demoralized when I try a quick trip to a grocery store and miss my life terribly. I had a very full life, and now I find myself socializing basically never because it is just so hard to have people over (not that I could go anywhere). I have become quite isolated and I don’t even like to talk on the phone very much to friends because that too makes my symptoms worse. Try to hang in until Aug. 11th when you see Dr. Rauch. You definitely should be on a med at this point and maybe that can give you some hope that in time something will work. That’s basically how I get through each day… I am hoping the verapamil will work in time. It gives me a little bit of hope that I am at least taking something to help my symptoms. I wasn’t diagnosed with this for about 15 months, so I know for sure that doing nothing in terms of meds will not get me better.
I look forward to hearing about your appointment. I spoke to Dr. Rauch a few times on the phone and he is very nice. If you are more interested in taking an SSRI instead of a tri-cyclic, I would discuss this with him. I’m sure he would be open to helping you in any way he can.
Warmest,
Lisa

8

I get light-headed and occasional dizziness but it does not rule my life like the headaches do. I had gent injections and a labyrinthectomy on the right ear in '07 so I have no vestibular function on the right. That substantially decreased my dizziness.
I am still able to work part time although I can not walk or drive or tolerate florescant lights and other common migraine triggers. Once I am home for the day, I am on the couch with my head supported. Occasionally I can sit up for dinner. On bad nights, I am vomiting and need help with everything- getting undressed and basic hygiene. I am sure we have all been through that lovely aspect of this. I have not been able to do any evening activities for several years. I miss book clubs, meetings at church and going out to dinner with family & friends. I also miss biking & hiking. Last weekend, my husband & I decided we can no longer camp. I can’t get into the trailer by myself and it’s simply too much work for him to do by himself. Makes me sad to have another loss.
But I am lucky to have a great family and friends. We needed to sell our house to pay bills & my sister immediately asked us to move in with her. And her house is wheelchair accessible! My parents live nearby, as well as many highschool friends, so I condider myself blessed. I know I will conquer this. Dr Hain said he will not give up on me and I will keep doing whatever I need to do to get better.

Claudia

9

Lisa,

I am sorry that this illness forces you to basically be in bed. That must feel like torture when you were used to not only have an active body, but also an active mind. I often have difficulty reading books or the computer, but somehow, I can generally tolerate watching captions on TV. I hope you find some answers soon and can climb the path path to a healthy life again soon.

Claudia

10

Lisa: I think just seeing Dr. Rauch on 8/11 will make you feel much better. Just knowing there is hope kinda relieves some of the anxiety of this …

11

Yeah Rauch seems like such a nice guy. He also seems very smart, which is to my suprise not that common among doctors … I can’t remember how much/long nortriptyline did you take?

I was in your position over 6 months ago; I could do most things if I really pushed through, but everything felt horrible and there was no joy because of the magnets in my head + jumpy vision etc. etc.
I still remember lying on the porch looking up, and seeing things as if the clouds where not moving but instead me and the house was. Then every third second there would be a great “lag” and the cloud had chopped forward; very strange… I also wrote a very depressing poem about ones soul being ripped apart by this.

I am much better these days, and I don’t know why that is. I am on no medication and I don’t watch my diet. The things that used to trigger my symptoms like motion, lack of sleep + certain food is no longer a problem (most of the time). I feel 90% most days and that’s good enough to live a fairly full life so I’m quite happy about that.

So where am I going with this? You NEVER know where you are going to be tomorrow; I thought nothing ever would be okay again, that my life was over at 21 and that I would go on with this wretched existence till the day I died. Then by and by (didn’t spare a sigh!), I got better!

Don’t let hope leave you, remember the night is darkest before sunrise :]

ps. I’m probably not having MAV but Mdds I guess(?); it seemed the dizziness might be the trigger of migraines for me and not vice versa. Hope no one minds if I stick around this great forum though.

12

Thanks for your kind responses

mikaelhs - of course you can stick around here. so glad things improved naturally for you.

13

— Begin quote from “MikaelHS”

Yeah rauch seems like such a nice guy. He also seems very smart, which is to my suprise not that common among doctors…

— End quote

hey, watch it…lol… glad you are better!

14

Hey Lisa,

Hang in there. I too remember having those days where I just was so down b/c I didn’t feel like I had any kind of life. I had a two year old and I just felt so bad that I couldn’t do what I wanted to do with her. But, things did get better and now I feel like I am 95-100% better after 3-4 months on meds. I too, like to visit this forum just to give people support and encouragement. I know how much it helped me when I was feeling so crappy.

I agree with what others have said about Dr. Rauch. He seems like he really knows a lot about MAV and I’m sure that he will be able to help you. I was very reluctant to try Cymbalta and actually had the prescription for a few weeks before I filled it. It turned out to be the one medication that made a difference and got me on the road back to normal. I hope that during your visit you are able to discuss a medication that you are comfortable with so that you start to feel better.

:slight_smile: Colleen

15

— Begin quote from “MAVLisa”

I am so very depressed from this illness. When people are depressed it is very helpful to motivate yourself to do things, etc., however, I am not able to do anything due to this condition. I have suffered from terrible disequilibrium for 2 years, which make it so difficult to walk. But, only during the last year, have my symptoms while sitting increased dramatically. I have tremendous “dizziness in my head.” It is almost like my brain cannot process visual information. This makes it VERY difficult to watch TV, look on the internet (although I’m doing it now w/ much trouble), read, etc. With being unable to go outside, socialize with anyone even inside (I cannot focus on conversations at all), inability to read, watch TV, etc., there leaves pretty much nothing for me to do. Are others this disabled? How do you spend your time?

Just to note, yesterday, my parents came over, and since I just moved they were helpful in putting some of our stuff away, etc. My husband and parents were doing all this work, and I couldn’t do anything at all. I even reached a point where sitting on the couch made me way too sick, and I ended up lying in bed. It is just so very depressing. When I thought things couldn’t get worse yesterday I experienced a migraine with aura, which only made me dizzies worse, and then I had terrible head pain. I sure, though, do miss the days when I just had head pain and none of these terrible MAV sxs. On Friday, my sister-in-law came over with my 4-year-old niece, and I couldn’t hold a conversation at all and of course couldn’t play with my niece. It was so nice of them to visit, but I felt so sad during and after the visit. When I am forced to interact with people it further highlights just how sick I am, and just makes me more sad. I am so sorry to complain. I just don’t know how much of this I can take. Day in and day out I feel like I have no joy whatsoever. I just want my life back. It was such a wonderful life. I am so sorry. Don’t mean to get others more down. Just thought I would write to people that I know understand.

— End quote

I can SO relate to this… it’s as if you’re describing my life. I also cannot go outside (more than two years inside this damn apartment now) and also have huge problems with having people over, for multiple reasons (the dizziness while having people in my field of view, generally feeling crap anyway, and added extreme anxiety from the two previous - plus the extreme sensitivyt to smells etc).
I don’t have much problems with the 'net (as long as I block animations, ads, etc.), but I sure do with TV. I’ve actually managed to watch a bit in the last few weeks, but I watch in a small window and it does happen that I have to stop because I feel too crap. :frowning:

Right now, it feels as if I’d be “normal enough” if I could just get rid of this ridiculous visual sensitivity/nausea and watch TV and play guitar. Is that a life? No, but it’d be a LOT better than what I have right now. I honestly can’t imagine going back to normal right now, but I’m still hopeful on some level - it just feels unrealistic somehow.

16

Hi Tranquility and all

— Begin quote from ____

Right now, it feels as if I’d be “normal enough” if I could just get rid of this ridiculous visual sensitivity/nausea and watch TV and play guitar. Is that a life? No, but it’d be a LOT better than what I have right now. I honestly can’t imagine going back to normal right now, but I’m still hopeful on some level - it just feels unrealistic somehow.

— End quote

I’ve been debating with myself whether to write this reply or not. I hesitate because I’m not fully out of the woods myself yet although I’ve had MAV for many, many years and badly so since about fifteen years ago. To be honest I’ve felt like crying reading some of these posts. I really, really know how you feel, been there. I totally relate to so many of the symptoms and the accompanying depression and fear that things will never get better.

The reason I’m writing this is to say it IS realistic to be hopeful even after years of not seeing any change. It CAN and DOES happen. It happened to me. I honestly thought I was doomed to be like I was some years ago forever. I too had terrible visual problems, couldn’t do anything at all for a period of time, just had to keep lying on the bed away from any stimulation at all, scared stiff by what was happening to me. The sense of isolation was intense. I couldn’t go out, couldn’t read write, watch TV, listen to the radio, use the computer, the list was endless. I had to have the curtains shut all the time, wear dark glasses, felt as if my brain was going visually mad, it was a nightmare for me and my family.

BUT somehow I got through and out the other end. I hope I don’t come across as sounding patronising but I just wanted to encourage you that despite how bad it seems now, and how impossible recovery seems, hold onto that hope because symptoms CAN and DO get better, even against the odds.

Brenda

17

colleen - so glad to hear that you are so much better.

Tranquility - it is so hard for people to understand why it is difficult to have people over. Trying to focus on a person is dreadful. This is so tough, but it is our life NOW, not FOREVER. Now, I have to internalize that. are you on any meds now? i wish you all the very best.

18

I too can relate. I am currently FORCING myself to do little things a little at a time, but I’d rather sit and cry. The only people I have around though are close friends and my family that way I don’t get as anxious. The computer is at times friend and at other times foe. Tranquility do you have anyone to help you?? Are you taking any meds? My heart goes out to you! I know exactly how you feel.

19

I think you guys should just try preventatives one by one, try to push through the sideeffects and go extremely slow. Yes it may take time before the right one comes up but at least then you have some sort of plan… Transmagnetic stimulation is proposed as a possible future treatment of similar disorders, maybe it can work for mav too.

Tran, I know the situation here in sweden… It sucks and that’s why I just stopped going to the docs; I know that’s not really an option for you though.

20

Brenda - so great to read your post. I wish you luck in continuing to feel well. Did meds finally do the trick for you.

MikaelHS- I agree 100%. I know I am not getting better without meds. Unfortunately, I don’t have much of an option now because of my being pregnant. I have trialed many meds and will resume the trials once I can. The side effects are tough, but I know I have no choice but to let my body adjust.