Going NUTS

It is truly a wonder I have not yet lost my mind! I have no idea if I will be approved to see this specialist I really doubt it and after a year and 3 months I am still suffering. Although the dizzies arent terrible my symptoms are ALWAYS changing…lately and one of the worst ones yet is if I am resting on the couch I have this disconnection far way inside myself feeling and it is profoundly disturbing! It scares me! I no longer have ANY idea what is wrong with me and I believe now more than ever that I will be dealign with this forever and I so hate the people with drug addictions that are ruining their lives and the lives of those around them when they have something that is so preventable and treatable while I suffer with something there is no treatment for when I want so much to enjoy the little tiny things people take for granted!! Has anyone else had this horrible disconnected thing and do you think it will pass soon? I went to a wedidng and took valium before and the whole day was great no real symptoms apart from a wierd twitch thing with my left hand but ever since i have felt crappy. I have been on the MAV diet for 3 months now and Nortiptyline for a little over a month and if it is migraines WTH why do I still feel this way…Is it still VN?? Is it menieres?? Anyone know the statistic chances of me being ill for life?? I just need some hope to get through this wretched life…someday I wanted another baby but I refuse to do that to another child if I cant ever get well…at 26 is this what I am looking at for quality of life…inability to drive…work…play with my kids…enjoy life??

Okay, first I think you’re describing “disassociation”. I don’t have it but it is a symptom of migraine.

Second, I’d never tell you “I know what you’re going through”. I don’t think any of us can really know what another is going through. But I can certainly relate to the “this can’t be the rest of my life!!!” feeling. I’ve had that alot myself. Try to hang in there.

When I get discouraged I try to remember Alan Shepherd. First american astronaut to orbit the earth. Then came down with a horrible balance disorder. Diagnosed with Meniere but MAV wasn’t even on the map back then so who knows what he really had? Grounded for 8 years. Regained his health (he had an operation which is now generally believed to have no value, so most likely he just got better) and went to the moon. He’s fine now by the way other than the fact that he’s like 80.

My point is these things usually do get better. Sometimes it takes years but the natural course for balance disorders is usually improvement. Oh, and difficult as it can be - try to stay positive. I really believe attitude can have alot to do with how we fair long term.

Just the things I tell my self when I get bummed. Hope it helps.

Chaz

Hi D.Dizzy,
Hang in there, there are good times around the corner. Sorry I can’t help about the “disassociation” stuff, but have had lots of other creepy, scary stuff since I came down with MAV. You mentioned that you’re 1 year and 3 months down the track, all I can say is that I’m 2 years & 3 months down the track and starting to make headway so I’m sure you will too. My neuro said exactly what Chaz is saying, things do take their natural course and improvement is often so slow we hardly notice, but with the right meds and time improvement will come for you.

Chaz, your words of support for D.Dizzy were ‘spot on’, I hope you’re feeling improved with your battle too. I actually found them very comforting too, because we’re all living in the ‘here and now’, it’s so difficult to understand that our bodies do somehow recover slowly. My neuro said that all I should be doing is what I just felt capable of doing and don’t beat myself up about it, because slowly but surely I’ll find myself doing more and more as time passes. And you know what, he’s been absolutely right! I was very sceptical of those comments particularly when I felt so bad, but am now starting to believe that he may just be right. :stuck_out_tongue:

Much good health to both D.Dizzy and Chaz

regards
Judy

— Begin quote from "Chaz"

When I get discouraged I try to remember Alan Shepherd. First american astronaut to orbit the earth. Then came down with a horrible balance disorder. Diagnosed with Meniere but MAV wasn’t even on the map back then so who knows what he really had? Grounded for 8 years. Regained his health (he had an operation which is now generally believed to have no value, so most likely he just got better) and went to the moon. He’s fine now by the way other than the fact that he’s like 80.

— End quote

Heh, actually this is as off topic but it gets, but he died 10 years ago :oops:
Needless to say this is completely unrelated to his disorder - and thus very off topic.

DD - i could not have put it better myself. The insanity of this illness, the fuzzy lines regarding what’s what (meniere’s versus MAV versus MDD, versus …), the disagreement among the top docs in the field as to how to treat, and these crazy, crazy disabling symptoms. And you’re so young. I’ve posted many times how bad I feel for young people who have families to raise, and their entire lives ahead of them. And to not have another child - not that you need my permission, but i totally support your decision. And the anger at people who have NO IDEA and live life as if health were another entitlement and will continue to be so. the frustration - will this ever end?!

About the dissociation - yea I’ve had that - made me feel like I was going mad. Let me tell you what Buchholz says: “dissociations or disconnection, otherwordly experiences, altered self-perceptions, vague premonitions, or mood changes - especially depression. Depression and migraine often cycle hand in hand, as if arising from a common origin in the brain” DD - I’ve had pretty much all those symptoms, and i was also deeply depressed, which is one of the reasons it took me so long to get a Dx. My husband is a psychologist, so of course, he thought this was psychologically based, which really pissed me off!

Chaz - I can’t say it any better than you did, but i’ll add a few words of my own.

I’ve been at this for 6+ years. I only got my Dx last August and since treatment have had steady improvement and pray to God that Topamax will continue to give me results. But it may not. And my life may be, at least, limited, forever. I remember watching one of Rauch’s videos. He said that, for most people with MAV, who do well on a preventative, a vestibular suppressant is also necessary for them to lead a normal life - enter benzos (although there are other suppressants, just none for me).

Julie

A few years ago I had the disconnected feeling. It came after I had completed preparation for a colonoscopy. I had a fever for a few days but otherwise felt okay so they wanted me to have the procedure. Later that night, I started having that jdisconnected feeling. I thought the first one was just a fluke, but then I had another. I remember “floating” to my bedroom to wake my husband. It felt like I was not attached to earth and I thought I was dying.
Anyway, I ended up with bacterial pneumonia, IV antibiotics and stayed in hospital for 5 days. I was also severely dehydrated.

It was only after I started reading up on MAV that I made the connection.
I am sorry that you have to deal with this so young. My odyssey stated when I was in my early 20’s also. There have been long stretches of good or manageable years so don’t give up hope for that. Cleaning up your diet is a good thing no matter what. Dealing with stress in a healthy way is a must.
Exercise is a good thing for me, I must walk every day with my dogs. I also have a good psychologist, if you haven’t thought of that as a tool, please give it some consideration. My reason for saying this is MAV, MM or any of the silent diseases are devastating. Friends and family cannot deal with this pressure because they are too close to us. So having a professional that can give guidance, allow healthy venting, help us navigate treatment options, support us through the depression that often accompanies this disease, is really important.
Wishing you better days, Janine

Wikipedia

“Shepard died of leukemia near his home in Pebble Beach, California on July 21, 1998, two years after being diagnosed with that disease. His wife of 53 years, the former Louise Brewer, died five weeks afterward. Both were cremated, and their ashes were committed to the sea.”

Hmmm…guess he’s not fine…or even 80

The balance disorder didn’t get him though - he apparently completely overcame that.

I’ll try to research better next time. Thanks for keeping me honest.

Chaz

Aw Chaz, go easy on yourself, this isn’t a Jeopardy show :slight_smile:

— Begin quote from "amberini"

I also have a good psychologist, if you haven’t thought of that as a tool, please give it some consideration. My reason for saying this is MAV, MM or any of the silent diseases are devastating. Friends and family cannot deal with this pressure because they are too close to us. So having a professional that can give guidance, allow healthy venting, help us navigate treatment options, support us through the depression that often accompanies this disease, is really important.
Wishing you better days, Janine

— End quote

I actually read in Buchholz, while looking something up for another thread, that he thinks depression and migraine go hand in hand.

I think therapy is a great idea, and for the first time in a long time I feel up to talk about this horrific experience. I couldn’t have even thought about it while bedridden. And i can see now why it’s so hard to get a depressed person to say a word. But now I really feel like talking about it, spilling my guts, you know? (And my husband got overloaded a year ago) Problem is, I still can’t drive, and my worst, by far, position, in terms of comfort level, is sitting. I’d have to be in a swivel chair - would probably drive the therapist nuts.

All the same, i think it’s a great idea, especially with this crazy-making illness of ours.

Julie

D-Dizzy-

I also have quite a bit of experience with the “depersonalization” / “derealization” thing. (23 years to be exact). When I was 20 years old, I had my first episode, and was told it was "anxiety/panic attacks. Back then I said “No way. Whatever is causing this to happen to me is CAUSING me to panic !!!” (Who wouldn’t panic?) It’s a horrifying feeling. Actually, I didn’t care ***what ***they called it, they gave me a beta blocker, and I started doing breathing exercises when one would hit. (Don’t laugh, it actually seemed to help. Maybe it was all in my mind, I don’t know, but I did them anyway, and it kind of a gave me a little control over the situation.)

Anyway, it wasn’t until I was diagnosed with Migraine and found this board that I actually figured out my “panic attacks” were related to migraine.

I still get them by the way, just not like I used to (way back when). Thankfully, I don’t live each waking moment, dreading and fearing the next one, like I used to. :smiley: )

I’m a firm believer that we all come to find the right combo of things that eventually give us our lives back. (Meds, diet, excercise, whatever it takes).

Hang in there!

Kim

Hi all,
here is some info,
this is one about meniers similar to our disorder.
and depersonalization , from what I hear it happens with most vertigo patients.
jen

Depersonalization, vertigo and Ménière’s disease.
Psychol Rep. 1989 Apr;64(2):527-34.
Ménière’s disease is generally accepted to be a consequence of distention of the endolymphatic sac of the inner ear. Although the exact etiology is unclear, there is a body of research suggesting that Ménière’s disease is of psychosomatic origin. While we do not intend to review the literature exhaustively, we briefly review several frequently cited studies. Even though this literature is so severely flawed that no solid conclusions may be drawn from it, certain questions about the psychological aspect of this disorder continue to surface. Our limited access to patients with vertigo has not allowed us to undertake a carefully designed study. However, in clinical practice we have noted that many persons who complain of vertigo (whether due to Ménière’s disease or other causes) also report symptoms of depersonalization and derealization. In this paper we present the cases of two women with Ménière’s disease who also experienced concurrent feelings of unreality. It appears likely that feelings of unreality may occur regularly in association with syndromes causing vertigo, presumably as a consequence of vestibular dysfunction. We argue that emotional disturbances previously identified as predisposing causes of Ménière’s disease are more likely effects of the disease. Although the discussion of two uncontrolled cases can do little to help solve nagging questions about a psychosomatic component to this disorder, we believe it may suggest a different perspective from which to investigate these complex phenomena. [Abstract]

more on the subject.here. :shock:

neurotransmitter.net/depersonalization.html

Here’s another potential “spin” on this.

This study was dated 1989. I’m not sure if MAV was even recognized in '89. If it was you can be sure that most balance specialist probably hadn’t heard of it. So what exactly was happening to all the folks with MAV back then? A large precentage of them were being mis-diagnosed with the “classic” idiopathic balance disorder - Meniere’s disease. It is very possible, perhaps even likely, that the individuals cited in this study as experiencing depersonalization and derealization were actually suffering from MAV.

I also find this line of reasoning encouraging for another reason. Numerous studies dating back many years indicate that the “natural course” of Meniere’s disease is improvement and ultimately resolution of vestibular symptoms. If MAV is as common as they now believe, you can bet that many of the patients in these older studies actually had MAV as opposed to true Meniere’s. So it’s logical to think that, based on these studies, MAV should have an improving trend over time.

Chaz

When I saw my doc he told me nobody recognized MAV as a diagnosis until 1992.