Activity vs. symptoms

[Tranquillity]

Hey everybody,
I have a bit of a problem. I talked to a counsellor recently, who thought it’d be a good idea for me to start getting out again (I’m housebound thanks to MAV if you didn’t know). My parents* agreed, of course. The problem is twofold… First, I’m almost completely sure that it will make me feel like crap, like any activity does right now… Second, since I don’t do it myself (again, right now), they want to add some kind of “contact person” to help/force me to it. They figure my parents can’t, because they would feel bad when I feel I’ve had too much (i.e. feel sick). I know their intentions are basically good, but I don’t think I’ve seen one MAVer who has gotten better by simply forcing through it! Given how extremely sensitive I am to visual input and motion, I just don’t see how this could work as long as things are this bad.
My parents, at least mom, figure something like this: The more I do, the better I will feel. Eventually I’ll either be getting close to feeling (and being) normal, OR, I will feel only slightly better but still “able” to do more things.
I disagree, and say that the more I do, the WORSE I feel! (This is pretty much fact as it is.) The only way out I can see right now is to get this under control by treating it (mostly by finding the right meds, I guess). When the symptoms allow, I do more and more. That I can see happening and working - it’s not as if I prefer sitting here alone day in, day out… If I felt better, I would absolutely start doing more, no doubt about it.

So, in short…
Their way: Force me to do stuff, with increasing difficulty, to make the symptoms lessen more and more.
My way: Get this under control, and when I feel better, do more and more as the symptoms (hopefully) lessen.

What do you think? And, what, if anything, has your docs said about this?
The Spontaneous vertigo and headache: endolymphatic hydrops or migraine? - PubMed I’ve talked to, says that when migraine is uncontrolled (which it no doubt is in my case), any kind of VRT/excessive stimulation often make patients feel worse for no benefit at all. He’s a ENG technician who talks to a lot of dizzy people, so I do trust what he says.

• I’m probably the youngest member around here; 21 and living at home, much because of the disease.

[system]

Tran,

you must have talked to a counselor over the phone, yes?

Do you have an MAV doc? If so, have you brought this up with him/her?

Let me tell you what a Hain patient recently told me. When he asked Hain what would happen if he pushed himself to do more, Hain said, you won’t hurt yourself, or send yourself deeper into your illness, you’ll just exhaust yourself. The way that statement makes sense to me, in my layman’s terms is that my brain is already trying to deal with it’s over-excitable state (according to Hain’s ppt. slides) and pushing myself would naturally lead to exhaustion.

So, Tran, if you don’t have an MAV doc to bring into this intervention you’re up against a bunch of people who are trying to treat something they don’t know squat about, good intentions, i’m sure.

I’m with you on every point you made.

THE MORE I DO THE WORSE I FEEL by alot!! the only reason I’m doing more is because i’m medicated, not because my brain is adapting. not because i’m pushing myself and getting positive feedback from it - i tried that - UGH!!!

Tran, you know your body, you know what you’re going through, you’ve been sick long enough to know whether doing more is helping you or not.

I also know that you had a real bad experience with Lyrica, but there are other meds out there. I’m doing great with Topamax because I went real real slow. Klonopin helps a great deal.

Don’t give up Tran.

Julie

[Tranquillity]

Thanks
I knew you’d agree with most of that.

— Begin quote from “Julie”

Do you have an MAV doc? If so, have you brought this up with him/her?

— End quote

No, and that’s a really bad thing. I’m trying to change it
Although, a “real” MAV doc I don’t know… Not even sure there IS one in the entire country. I know of a couple docs really specialized on dizziness, but pretty far from here and the article an MAV on their site only talks about rotary vertigo… Except a one-liner that says some people have a unsteadyness lasting weeks. (They do however note that we’re sensitive and get motion sick easily.)
In any case, any neuro would probably be a lot better than a GP when it comes to migraine!

— Begin quote from “Julie”

So, Tran, if you don’t have an MAV doc to bring into this intervention you’re up against a bunch of people who are trying to treat something they don’t know squat about, good intentions, i’m sure.

— End quote

Exactly how I feel! I’ve tried telling them that, too. Hopefully this will give something more to throw on the fire.
Actually, I think I told them at some point, “what I need isn’t a counsellor, it’s a neurotologist!”. I should probably repeat that…

— Begin quote from “Julie”

Don’t give up Tran.

— End quote

Not giving up yet
The bad part is that I need to get off my current meds to try the next. Well, with some meds (topamax, verapamil) I don’t have to, but there’s little doubt that I did get worse around the same time I started one of them… so there could be some benefit in it anyway.

[system]

Tran,

you’re not in the US?

i feel for you. I’m married to a psychologist and when I had my crash I also went into a major depression. Of course, he focused on the depression. He was convinced that my symptoms were psychogenic. I knew it was more than that, but I didn’t know what. I finally made it out to a neurologist and my husband asked him **out in the hallway **if my symptoms could be psychogenic :evil: Since the neurologist didn’t know what to make of me, he said “well, you may be onto something.” The neurologist wanted me to seek psychiatric care! We were at odds over it for a full year when i finally found this forum and KNEW this is what I had and went after an MAV doc to get treatment. I’m still furious over the whole thing. it was real demeaning. I felt like picking up and leaving, but I was too sick and dependent - bad place to be, as i’m sure you know.

I’m reminded of another story of some friends who still insist that i’ve got Lyme disease, but i’ll leave it at that, i don’t want to take over this thread.

Julie

[system]

Yeah, bottom-line - we’re not talking pyschological stuff here. That would be a different story for sure. I went through that in my 20’s when they diagnosed me with anxiety/panic attacks. They said it was all psychological, and avoidance of certain things/places was the worst thing I could do. MAV is NOT psychological. Julie, you said it, you KNEW there was more to it, as well as I did, and Tranquility you know it too. People don’t get it.

Keep seeking a Doctor who gets it, start with treatment, and once you begin to improve - THEN push yourself to do stuff you’ve been unable to do for so long.

Its the most frustrating thing - so few get it - I agree with Jul - don’t give up Tranquility. I still have people close to me that don’t get it, but thats ok now, because I’m so much better now. You’ll get there!!!

[Brian_B]

Tran,

I am not trying to play the devils advocate here, but I have found that getting out does help.

Don’t get me wrong, I do have to be very selective as to where and when I go. Places with lots of people or noises, or open areas are no-no’s for me. I have found that I have to do most of my shopping later in the evening past rush hour. My mother just put in wooden floors and the bad acuoustics wooden floors creates will keep me from visiting her. She doesn’t believe me, but I won’t be going over to her house. When I take my kids to the park, I try to take them someplace with lots of trees, partially so that everything isn’t so open, partially for sound absorbsation.

My point is maybe getting out isn’t such a bad idea, just be selective as to where and when you go.

Brian

[MarciM]

Tranquility,

I’m sorry about your circumstances. It’s a real bummer to feel pressure from others who don’t understand the way you are feeling. Since you asked, I am going to give you some advice based on my own life experience. Obviously, you can take it or leave it. Only you know yourself well enough to decide your course of action.

I see two issues here. The MAV isn’t going to improve by getting out and being more active. However, by remaining housebound, you risk serious depression. I am pushing myself to continue working and staying active in my kids’ lives. Every morning I feel like crap and would prefer to stay home in bed or on the couch. Most days I make myself get out the door. Some days I feel better after getting moving and going to work. I think if I stayed home on those days, I would have wasted my day. Other days, I get to work and struggle through the day wishing I were home in bed.

My suggestion to you is to try to get out of the house when you can on your terms. Continue counseling, maybe with someone new if you don’t feel supported by your current counselor. Depression as a result of living with MAV and being stuck at home without normal human interactions is a real issue. That is one of the primary reasons I continue to push myself. Years ago, I got out of the military and started a home childcare business. Going from daily interaction with other adults to being stuck at home with only toddlers to talk to threw me into a major depression. Lesson learned.

Even more importantly, I suggest you find a medical specialist who understands MAV and how to treat it. As we all have found, it takes a lot of trial and error to find a treatment that works for each of us as individuals. My personal experience with the two drugs you mentioned is the Verapamil helped with vertigo and the Topamax made me feel like brain-dead zombie.

In summary, I fall somewhere in the middle with my advice. I don’t believe others should dictate how much you get out of the house. However, I do believe you may see at least some emotional benefit from getting out on occasions on your terms. I also believe you could find the most benefit from both a good medical doctor and a supportive counselor.

Good luck! I truly hope you feel better soon. At this time in your life you should be out living it up, not stuck at home with this awful ailment.

Take care,

Marci

[system]

Marci brings up an issue that is important and that is one’s personality style. Being at home has not been a burden to me emotionally at all and did not cause or add to my depression, (my depression was a Major Depression, not a situational depression which is what i believe Marci is talking about, if you had a dx of MD, i apologize, but the difference is enormous) as I’m introverted by nature. So Tran, if you think that being shut-in is causing you to be depressed, and that being situationally depressed is a big problem, i don’t need to tell you whether you need to consider that, you’ll know.

The other issue that Marci brings up is how serious one’s MAV symptoms are as compared to those you are asking the input of (us ). When i hear Marci talk about staying involved with her kids and keeping a job - there is no way Marci’s symptoms are as bad as mine, even with the improvements I’ve had. I have no idea how bad Tranquility’s are, but if he is as bad as I was a year ago, i could barely get to the bathroom, let alone to a forest preserve or out to a job. So a year ago it would have been insane for someone to suggest that I push myself to get out a little bit. Even today, with all the improvement I’ve had, when I HAVE to go out, i still have to load up with 20-30 mg of Valium and I STILL pay a price in terms of symptoms. So it would still be insane for somebody to suggest that i push myself to get out a little bit.

As you guys have all figured out for yourselves, we know ourselves, we know our bodies, we know our symptoms and what makes them wax and wane. after a year of treatment, i can do one thing outside of the house, walk down the road, that’s it.

Tran, you’ve been housebound for quite awhile - CAN you get out without paying a big price in terms of symptoms? Another question: Do you NEED to get out of the house for sanity’s sake? Only you know that.

Thanks for the lively interesting thread Tranquility, I hope it’s helpful to you. Sometimes i think it helps to see the differences between us.

Julie

[MarciM]

Julie is correct in that we are all different, so you have to determine on your own what you are capable of doing. Case in point, I can ride in a car and function at work at my desk job (although at a much lower level than before MAV) and Julie says she cannot go out in a car without Valium. A car ride actually makes me feel better as long as the car is moving. On the other hand, Julie can walk three miles, while for me the effort of just walking into the building and up the stairs at work makes my head spin and causes my visual auras to worsen temporarily. I’ve learned to allow time to rest and acclimate when I get to my desk. I’ve tried walking around the block, but exercise is too much for me right now. I am just too stubborn and determined to get through this without giving up the things that are important to me, even if that means I am miserable and sick at work. Maybe I’m being foolish.

Julie is also correct when she says one’s personality style is an important component to this decision. I have experienced and been diagnosed with both major depression and situational depression in my lifetime. I have a significant history of depression in my family. Both can be dangerous if you do not have the tools and experience to cope. I’m sure those of you doing research have come across the commonality of patients who suffer from depression and migraine. I honestly think I would become suicidal if I chose not to leave my house.

Others like Julie are perfectly content to stay at home with or without a medical condition. There is no judgment here. Being an introvert or extrovert does not make one better than the other. The point is you have to decide whether remaining housebound is beneficial or detrimental to your health. Believe me, staying home would be easier and less stressful to me and there are days that I fantasize about it. But I know myself, and after a temporary period of decompression I would fall into a deep depression. And, my family would suffer. I refuse to let that happen! (Like I said, I’m a stubborn gal! )

Bottom line, Tranquility, what is your personality type? Do your parents and counselor know you well enough that they are concerned because remaining housebound does not fit your normal mode of operation? Or, are you more of an introvert who will do better staying home?

[system]

Marci:

— Begin quote from ____

A car ride actually makes me feel better as long as the car is moving. On the other hand, Julie can walk three miles, while for me the effort of just walking into the building and up the stairs at work makes my head spin and causes my visual auras to worsen temporarily. I’ve learned to allow time to rest and acclimate when I get to my desk.

— End quote

That’s classic, isn’t it? Before I got too sick to even drive i felt much better while driving, until i quit. then i would get slammed with symptoms and would have to let them settle down. I can’t even fatham how i would feel now, so i won’t. Even with 30 mg under my belt, when we go out to a doc’s appt, when the car stops, i have to lie there for at least 15-20 minutes to let the symptoms die down enough to get into the building. I feel great while I’m walking but when i get back home and stop i feel symptoms stirred up, which I need to let settle down. When I talk about paying a big price in terms of symptoms I mean something very different - i mean violent symptoms that do not settle down, even with 20-30 mg of V under my belt. And the walking, I don’t push. I found one day i could walk to the mailbox. Then i found i could walk down the road, etc. i never push past the point where it would stir symptoms up so much that it would drive me to bed for the rest of the day in living hell. I believe Tranquility was being loud and clear in his first post that being out would make him worse than it was worth being out would be, am i wrong Tranquility?

— Begin quote from ____

I have experienced and been diagnosed with both major depression and situational depression in my lifetime.

— End quote

my apologies for making an assumption based on nothing. I’m sorry you’ve had to suffer through MD - so you’ve been to hell and back? I was suicidally depressed and couldn’t get out of bed to save my life. So is the following correct? you drive yourself to get out so you don’t slip back into a depression?

— Begin quote from ____

Others like Julie are perfectly content to stay at home with or without a medical condition.

— End quote

I am FAR from being perfectly content to stay at home !!! Being introverted does not = hermit! It means my psychic energy flows inward. I am vividly aware of my inner life. It stimulates and satisfies me. And to me that is a great gift. I will resist giving you the list of things I long to do once I am well enough to get out. I started a thread on that very topic not long ago. If you think introverts sit around in the house all day, go take a look at it, you’ll be quite surprised.

Marci, we’re all “determined,” even those of us who are housebound and bedridden. We’re not home for no good reason. Not because we’re “perfectly fine with it,” or less “stubborn/determined.” It’s because we’re that sick. I guess I never thought I would have to explain that to a fellow MAVer - but even we have great differences between us. I learned during my crash the profundity of the wisdom to resist the human failing of judging others whose shoes we have not walked in. And the truth is, we can’t really walk in anyone’s shoes but our own - so we can distill that down to an aphorism: don’t judge others, period.

Tranquility you asked us two questions, clearly: “What do we think?” and “What have our docs said?”

So far, a handful of us have given answers to both. Hain says it will just exhaust us. The other question can only be answered subjectively and so we will differ.

I’m sure I’ve said as much as I have to say regarding Tranquilities original post.

Julie

P.S. Brian, sounds like you’ve hit on some reasonable activities for yourself

[jennyd]

Hi Tran,
As Julie has said mavers are in a Different class to other vestibuler patients,
Until the migraines are under control, we aren’t out of the woods.
Depending on what YOUR personal threshold of stress is.
And determining that for YOURSELF, may I add?
Will help you understand which external stressors will affect YOU.
For some maver’s too much visual input can send SOME maver’s reeling back into stress,therefore a
Migraine, and wammo! Back to where you started,As you well know!
For SOME, flung into bed swimming in a state of violent vertigo, with vomiting, or others not able to sit up. Or walk to the kitchen.
This alone eventually causes SOME of us not to be able to cope, with or without DEPRESSION.
I believe whole-heartedly in my own Dr with in. the one we were born with.
Our intuition!
I think Heather and Julie have mentioned this once before, when heather mentioned, she had always referred to her Migraine onset as BAM!!! And does believe in her heart it COULD be BAM.
You know, your own limits Tranquility, trust yourself.
No one knows what’s inside our heads, its proven time and time again, vestibular therapy dose not help mavers until the migraine is under control!!!
My physical therapist told me so herself.
She cancelled my sessions, after finding out I Was diagnosed with mav.
Walking is fab for DEPRESSION it helps get that serotonin and dopa levels rising in the brain, depression patients use it as therapy.
Maybe your family are thinking in these terms, but your therapist and family need to be made aware that the migraine has to be under control, before you can be put under too many stressors.
Maybe they need to do some research on migraines and how they work? :twisted:

Thinking of you Tranquility,
jen

[Tranquillity]

Thanks a lot for the replies guys! I didn’t except so much input.
I’ll answer a few, but there might be more answers/replies coming in a while.

— Begin quote from “Julie”

So Tran, if you think that being shut-in is causing you to be depressed, and that being situationally depressed is a big problem, i don’t need to tell you whether you need to consider that, you’ll know.

— End quote

I think I’m doing better with this (mentally) than most would, actually. I never was the ultra-social outgoing kind of person anyway (mostly the opposite), so even though I obviously feel lonely and all, and I do feel a bit down… who wouldn’t?! I don’t consider myself down enough to be depressed, though. I can definitely still be happy and have fun, although not too often since I’m so darn limited in what I can do.

— Begin quote from “Julie”

Tran, you’ve been housebound for quite awhile - CAN you get out without paying a big price in terms of symptoms? Another question: Do you NEED to get out of the house for sanity’s sake? Only you know that.

— End quote

No, I can’t, and that’s the whole problem. They are of course as sure as one can be that I’ll get used to it. UGH. I know my body doesn’t get used to this, it’s not as if I never try things! On the second question, both yes and no. At the moment, no - I can stand it for a while more, but needless to say not forever.

— Begin quote from “Julie”

Thanks for the lively interesting thread Tranquility, I hope it’s helpful to you. Sometimes i think it helps to see the differences between us.

— End quote

Hey, the thanks are supposed to come from me, not the other way around.

— Begin quote from “AZdizzy”

Yeah, bottom-line - we’re not talking pyschological stuff here. That would be a different story for sure. I went through that in my 20’s when they diagnosed me with anxiety/panic attacks. They said it was all psychological, and avoidance of certain things/places was the worst thing I could do. MAV is NOT psychological. Julie, you said it, you KNEW there was more to it, as well as I did, and Tranquility you know it too. People don’t get it.

— End quote

Heh, that’s very(!) similar to my story, actually. Although, they were right in my case; I certainly did have a lot of anxiety problems - and pushing myself DID help a lot. However, that was before, and this time it’s MAV - NOT anxiety, and pushing myself does NOT help this time around!
That’s a big part of the problem, they think it’s the same all over and thus think the same things will help. Well, it’s not, and they won’t!

I don’t have many other comments, except for thanks everyone (and I do mean everyone, even though I didn’t have comments for everyone)!

[Tranquillity]

Regarding the migraine diet… Do any of you have some links (or experiences!) that pretty much proves that it exists and WORKS? Mom simply CAN NOT accept that! Why? Well, a couple of people at her workplace has migraine, and they sure eat like “normal people”, so that pretty much proves that there is no such thing as a migraine diet, right?
She’s always on about how picky I am, etc. Well, I admit that I was a bit picky before all this, but that is NOT why I’m not eating pork/bacon/[insert all foods that exist here]. I’ve gotten my bad headaches down from 2-5 a WEEK to 1-3 a MONTH, and I keep telling her that… But the only reply I ever get is “well, you’re still not getting out, are you?”. Arrgh! If the only measure of how bad I am is how much I get out, I guess I’m still as bad as I was back when I was in bed more than half the days… but I’m not!

A bit of a rant, and I even held back so the post isn’t filled with :evil:

[MarciM]

Not everyone has food triggers, but many do. I have confirmed the following foods/additives are migraine triggers for me: caffeine, MSG, aspartame, and nitrates (processed meats typically contain nitrates). I’m still working on testing other foods on the migraine diet. There is a lot of information on the Internet and in books supporting the fact that following the migraine diet helps some migraine sufferers. If you see a difference by following the diet, then stick with it. The diet is not a cure-all, but it helps. Hopefully, your mom will come to understand this. Good luck!

[system]

Tranquility-

Absolutely get the book “Heal your Headache” By David Bucholz. Make your Mom read it, and then make her read it again!!!
(Its a great book- really). I think it will help you tremendously. It explains most everything in layman’s terms - very easy to read, and I think most here who have read it will agree. Wish I would have thought to mention it earlier. Really - go out and get it - you won’t regret it.

Kim

[system]

and if you can’t get your hands on the book, let me know, I’ll PM you a watered down version of the diet. It does exist, and it does work

[Tranquillity]

— Begin quote from “Julie”

and if you can’t get your hands on the book, let me know, I’ll PM you a watered down version of the diet. It does exist, and it does work

— End quote

It does work indeed, my problem isn’t knowing what to remove… it’s knowing what to eat! My diet is really tiny these days, I mostly repeat the same 3-4 dishes over and over. It gets boring very fast, but I’m not sure what to add back. :?
I have no trouble finding the book (so don’t worry :)), the problem lies in reading it (guess why, heh). I especially dislike paperbacks. Now that I think about it, I’ll order it anyway and read the important parts and/or read when I can.

[system]

yea, i used to have to pick choice times to read it - like five minutes a day, when i knew i was at my best, which wasn’t great, but i got through it. And the diet, all you have to really look at is the table portion of it, unless you want to go further.

and as far as adding things back - you’ll know i added a couple of things back last weekend and then wondered why i was feeling worse last week. like I said, you’ll know. just add something back and wait a couple of days.

make a list or like me, you’ll forget

keep in touch tranquility, we’re here to help you.

Julie

[dizzzyupthegirl]

Hi tranquility,

I’m 19, I understand what its like being young, sick and having parents who dont quite understand. Heres the deal with parents, or my parents at least, I think deep down subconsciously parents don’t want to feel like there is something is seriously wrong with their child so they push because they feel helpless and its all they know how to do. Also it makes sense that they would want to push you because as you know, most traditional problems are responsive to physical therapy, I personally have never found this to be helpful.

Are you on any meds? Take the benzo plunge if you haven’t already, you can sedate your central nervous system while experimenting with different migraine drugs if that is indeed your problem.

Good luck, I hope my experience is somewhat applicable to yours.
Selena

[jennyd]

Selena, I just wanted to say ,
Your parents are trully lucky to have such an brite understanding daughter.
your only 19 with the wisdom of a very old soul.
parents do snap into a flurry of fear when anything happens to their babies,
even if their babies are in their 40’s.
good on you honey.
jen