Why do we get this

(*I’m so DIZZZZY my head is spinnnin’ like a whirlpool it never ends and it’s yeww girl(???) makin it spinnn *… if I’d known Topamax was going to be this much fun I would have picked it over Bourbon back in the 70’s.)

Okay … Somebody give me a somewhat moderately easy to understand reason why this MAV thing happens to us. I have all these "I used to be able to… " and “Only a few years ago I could…” and “My ears NEVER bothered me before…” Now I have bowling-ball head & concrete neck muscles & raging tinnitus & whooshing inside my brain & this goofy-zombie thing goin on. What happened?

Yeah, I’m with Joy, What the Bleep happened to us!!???

I have a theory, but it’s just my own. I want to know what really happened, dang it!

Some of us are Blessed! I don’t know where you are spiritually? But myself I gave my heart to my Lord and Savior a little over 9 years ago. I don’t know how I could get through this without Him to lean on and sometimes to carry me. I don’t want to sound all preachy but He tells to be thankful for all things, when I came down with this spinning, sometimes spinning like I just got off a bad carnival ride and sometimes worse, I had to remember to thank him :slight_smile: . It made all the difference in this world, because He cares for me. Some would argue that it not fair, well it was not fair what He had to do to save us from our sins.

I’ll just hope and pray that He puts us all in contact with a great healer.

Earl,

Einstein said “God does not play dice with the Universe” I also believe the Universe is exactly as it should be (even this circus going on regarding the upcoming U.S. Presidential election - God help us! - and even my husband’s bad habits).

MAV is a piece of the cross I need to bare in this life in order to transform. Illness is always an opportunity to grow - Jung is quoted as saying what the psyche can’t hold falls into the body.

So if i need to spend the rest of my days rocking, so be it. I may have an inkling for what happens during the death transition, but nobody knows what lies beyond that - but i’ll bet there is no rocking!

In the meantime, i do thank God for all you good people,

Julie

You know what I bet there is no rocking, no spinning, no fill in the blaks for all the bad things you can think of.

One there thing is I’m color blind, do you realize all the different colors I will see and Know :smiley: one day.

Earl,

I had a dream the night my therapist was dying. I saw all colors - more than we can see as humans. The were radiant, unbelievably vivid, colors i couldn’t even imagine. then I saw the image of a white woman. The woman was about to step into a perfectly round circle on the floor. The second she stepped into the circle everything went away, for me, all the colors went away, the woman went away, the circle went away. I was left in a cloud-like feeling of total peace. In the dream, a voice said to me. “This is what it is like to be in heaven” (I was sick at the time, believe me, there was no rocking)

I woke up the next morning to find out that she had died in the middle of the night, at the time i was dreaming that wonderful dream.

That story reminds me of one other, other members of the forum know better than to get me going, you’ll learn :slight_smile:

My husband is a psychologist and one of his patients was a cop who was in one of the Trade Center buildings as it was collapsing. He saw the bodies falling and making those horrible noises you hear about. Saw the body parts flying across the street you hear about. the first building had fallen and he knew his building was falling and he knew he was going to die. He was so terrified! and then he was filled with the most peaceful feeling one could ever imagine. total peace - everything was right with the universe Then the moment he knew he was not going to die, he became terrified again.

He lived and could never return to work. He was a pretty macho guy, as you’d think he would have to be to do that kind of job, so he wasn’t the type to do well in therapy, especially the kind my husband does. But he took a real liking to my husband. He left him with three gifts: An Eva Cassidy CD which he listened to to help him through his hard times, an NYPD cap with 9/11/01 written on the back of it, and a police fraternity card - he said if you ever get pulled over all you have to do is show this card and they’ll wave you on :slight_smile:

Sorry for going off on a tangent, just thought it was an interesting story, beginning to end :slight_smile:

Julie

You know Julie, I maybe wrong but I think we have more in common than just MAV.

Just a one question. What does your husband think about MAV?

Earl,

My husband is one unconventional psychologist. Not only does he see patients in private practice but he teaches at a University. He does not teach conventional “scientific/biologic” psychology. He teaches what he believes is the most fundamental thing in understanding how human beings work - love. He believes if you don’t understand love you are lost in understanding yourself and in understanding relationships. Thus, most of us are lost, including, he knows, is he himself, because,

Of all the worn, smudged, dog-eared words in our vocabulary “love” is surely the grubbiest, smelliest, slimiest. Bawled from a million pulpits, lasciviously crooned through hundreds of millions of loudspeakers. It has become an outrage to good taste and decent feeling, an obscenity which one hesitates to pronounce. And yet it has to be pronounced, for, after all, love is the last word.

~ Aldous Huxley

What does he think of MAV? It truly humbled him. He thought he knew how to be a loving husband, he taught it everyday, he was the expert. After over a year with me bedridden, not know what the heck had happened, not know how to get to out to see anybody, i thought I was dying, because nobody could possibly be this dizzy and still exist. Daily, i made preparations, so that he would know how to close my business, we got the house ready to sell, I gave up my biggest client and were preparing to give up others - i was just getting worse and worse, at an increasingly fast rate. I don’t like to even think about how bad i would have gotten if i hadn’t finally doped myself up with Valium and got out the door to start seeing one doctor after another. Truth is, my dizziness was so bad, i could have actually starved for not being able to feed myself. I was almost totally disoriented 24/7. And my loving husband broke under the pressure. he’s 65 and he started waking up in the middle of the night in terror. He spent the entire year taking care of everything around the house, the dog, the shopping, the laundry. Late at night i would lie in bed and hear him doing the dishes, it broke my heart. And we had no relationship at all. I was so sick I couldn’t even converse. The movement of my own breath on the bed sent me swinging. I looked suicide in the face and decided against it - what an ugly face that was! That was another burden on him.

As I began to get better, i felt his distance. So we started talking about how hard it was on him. I couldn’t believe how much he had pent up inside. and it took a LOT of talking and ranting for him to get it out, which was really hard because, I’m still so sick. But i listened and listened and listened. And this spring i started taking walks. Pretty soon we were walking together and talking the entire time. And I was also well enough to cook. We were eating together and talking the entire time. I don’t remember us ever having so much to talk about, but we do. And that’s where we’re at now. It’s like a relationship renewed, and it’s good.

Before MAV we thought we were the best couple on the face of the earth, then we got humbled, we are flawed just like everybody else, but we’re a great couple and love each other madly!

How did your illness effect your family?

Julie

jules,
I know we’ve talked about this many times, family , husbands, friends, just not getting it.
walk in my shoes, boy I’d like to see that.

I’m just now going through a similar time with my husband, our lives together started to break down during my topa trial.
things got bad , REAL BAD.
to the point where , I truly wondered if my husband could take another day or it.

I did a stupid thing, I told him he could leave me and have a better life,
away from all this sickness, and I wouldnt hold him back.
when I said this , for a fleeting moment,I looked into his eyes and his silent contemplation,It said it all,
I saw him actual thinking about a life without this sick wife holding him back, and making his life uncomfortable, My heart just snapped in two.

It’s been a hard 4 months, I became sicker than ever, and my husband who is normally the Mr fix it man, broke at the sheer agaony of watching me, decintergrateing and not cope anymore.
now, I cant help but look at him , with a feeling of loss, a loss of what we had together years before all this mav happend.

I want his respect back, I had it when I worked side by side with him , for all those years, now I feel , his distance, and it hurts so bad.
I know he loves me, but is that only if I’m smilling, and pretend to be not sick. :frowning:

yes , we need to walk in peoples shoes to really GET IT!
jen from oz

Hi Jenny :!:

Yes, i felt like i lost his respect. I used to feel so special. I was so smart, so competent, took care of everything, organized. I understood things that most people don’t. and all of a sudden i’m stupid, withering away, can’t even stand from a squat, God help me to smile without crying, can’t even figure out how to pay a bill. The way he looked at me sometimes, i saw the pity, it made me sick.

But Jen that seems like eons ago. We are so much better now. In fact we’re better now than before the MAV, because we’re more real with each other. Carlton is conflict avoidant. I know how to fight, but he doesn’t. He has learned to come into the room, emotionally, he is really present now.

I know you are still struggling, but you’ll get there, and you know Mike will be there with you - he adores you :!: He’s just waiting for you to come back.

They can’t walk in our shoes, but neither can we walk in theirs. the best we can do is create opportunities where we can open up and really listen to each other and i mean shut up and listen. That alone can heal so many wounds.

I don’t believe in coincidence. It just so happened, in the days when Carlton and I were fighting, my sister who is a 10 year colon cancer survivor, called me up and during the conversation, she happened to mention “I think it was harder on Gus than it was on me.” you should have seen my eyes light up. I thought to myself, who sent that message from her lips to my ears?

Love ya, Jen,

Julie

P.S. Maggie was doing so well that i put her on maintenance (one dose a day) but she started coughing again, so i put her back up to TID. I guess one week was just too soon to cure her of her heart murmur :slight_smile: After one day of full dose she’s not coughing anymore. She’s 15 years old and she may only be around another year, but at least she’ll be comfortable.

Julie and Jen,

Thanks for sharing. I can relate. This past year has been difficult for my entire family. About a month ago, we had a big blow-up at my house. My husband and I have been married for over 16 years and rarely argue. On this day, however, I had come home feeling MAV miserable after a “good spell” when I once again fooled myself into believing I had this thing beat. My husband was tired too after his first day back teaching. A small spat turned into a heated argument where my husband told me our kids think I am crazy! That crushed me. I found out later that what they actually said was that I am different since I have been sick. Admittedly, I have been melancholy and irritable for much of the past year. In his frustration, my husband turned his words into a weapon. A very effective one. It turns out that my attempts to hide how sick I am at times to spare my family the emotional distress actually caused more distress because they just thought they were losing me emotionally. After that argument, I finally opened up about just how crazy and miserable this illness is. Things are getting better now. My family can better empathize with me and I am more conscious of how my moods and my illness impact my family. I’ve learned that open communication is critical when it comes to a family surviving this illness.

By the way, Jen, have you discontinued the Topamax? You mentioned how bad things were during your trial. I would say things were much worse during my Topamax trial, for me personally, for my family, and my workplace. Topamax nearly did me in. It still amazes me how a med can work miracles for one person and destroy the next.

Anyway, thanks again for sharing.

Marci

Hi Marci and Jules,
Our stories are so very much the same, I don’t think it hurts to talk openly about it, lets face it if we can’t be honest with our fellow mav’ers then something’s wrong!
Talking about how debilitating this illness is, in every facet of our daily lives, the most important being our precious family and loved ones, I don’t feel upset about talking to you all about all this, we are anonymous to a degree, nobody is immune to mav’s powers to crush the spirit.

Marci,
My topa trial, started way back on June the 10th, at first things went swimmingly,I felt I could dance on tables, my dizziness was slowing, My double vision went away for weeks, I had clarity of mind, some memories coming back that I thought I’d lost forever, I’ve always had trouble with long and short term memory due to my migraines so things were good for a short time, I truly thought I was in recovery, until all hell broke lose during that time of the month.

I made a few mistakes in my trial of topa, My first mistake was an impression I got from all over the internet, from reputable migraine sites and Dr’s literature, that 100mg Is the therapeutic dose for migraine. (if tolerated) that you could go as high as 100mg if needed.

I always took my time with topa, I never experienced cognitive SE’s for more than a day or so, even after gong up to 80mg a day, but many other SE’s started to creep in and take over my life.
The small SE’s didn’t faze me at all, pins and needles stopping and starting at each titration.
Taste perversions ect,

Unfortunately at 80 mg , I broke out in weeping rash all over my chest, chronic wheezing, and with in days, I was in the ER having Stroke like symptoms, No body knew what to think, not the ER or my neurologist.

my blood pressure was through the roof, so my neurologist told me to get the hell off it today TODAY, which I was reticent to do , after hearing nightmare stories of people that had gone off topa too quickly.
Believing that going higher or lower could stop these nasty SE’s, and being that my migraine hadn’t stopped, I proceeded to slowly taper back to 50mg where the symptoms weren’t near as bad.

I had to have 4 day’s completely free of the topa, and during that time,clarity of mind crept in, it was then that I slowly realized what damage it had done to my nervous system and felt an instant relief of all SE’s,then I took 25mg for about 2 days, but noticed every time I took it became sicker, I new I had to stop it completely and chose to trust my neurologist word, and stop it all together, I had no choice.

To be honest Marci,
I know now, my stubbornness about wanting to give meds a true trial, and wanting it to work so badly, that I could have killed myself.

Early in my topa trial,
I couldn’t put up with the insomnia that my Zoloft was giving me, which was a shame as the Zoloft gave me much needed strength and energy during the day,and softend the aches and pains from the constand migraines.
So I slowly withdraw from it at the same time as titrating on topa, I believe now this also contributed to my problems with topa for a while, I was in severe withdrawal syndrome for weeks on end.

But hey at least I tried topa,
It’s just one more med I can wipe off my list.
We are all different us migraineurs, and I hate to poo poo a med that could definitely work for others.

I’ve heard some people say it’s a marvelous med.
But for me it pushed me to the edge of insanity and has left some scars in my husbands and my relationship. Which hopefully will heal as well.

My migraines have now settled a tiny bit, back to where I can tolerate them.
I still can’t speak during a migraine, and I can’t walk properly for hours after having one, but at least I’m not feeling as if I’m dying now, head bobbing and falling to the floor.

Yuck!
What a year it’s been, my worst in the 15 years of my mav or whatever the hell, this so called migraine is.
Oh and yes Marci, I can now go back to pretending , I’m not a sick as I truly am, my family can be happier. :frowning:

Jen from oz.

(The following has nothing to do with Jen’s story)

I know some of you guys are probably sick of hearing me say this, but for those of you new to the forum, i’ll repeat. I know Topamax isn’t for everybody, but for those of you out there who it IS for, titration is key. And unless you have a doctor who knows Topamax inside and out like Hain does, you won’t have as good a chance of having a good titration and a good experience with a potentially great med. It’s given so much of my life back to me.

With Topamax, it’s not necessarily a linear titration. You need to **care **about those tingles; you need to care about those cognitives - even if they don’t bother you much. They are what guide you in terms of when to go up and when to go down.

In a nutshell: If you are experiencing tingling, you hold until it goes away completely. Then continue your titration. If you experience cognitives, to any extent, you go down and stay there until they go away. Then continue your titration. there are other variables which may come up, but they didn’t for me, so i can’t comment on them.

the last time I talked to Hain we talked about more Topamax for me. He asked if I had any tingling. I told him only when i was cooking. He said, no increase in Topamax for you. Just because of a little tingling when I cook. My cognitives had subsided completely, but that little tingling was enough for him to say no.

I’m real strict with myself, probably overly. i’m strict with the diet, and i was strict with Topamax and i think that’s why i had no problem with it, plus the fact that it was the right med for me.

Julie

Another thing that bothers me about this mav is,
I used to be a planner, going on a holiday, or even a night with friends.
Everything was planned perfectly.

My hubby prefers thing’s spontaneous, which used to bother me, I suppose it’s part of my migraine type personality or so I’ve read. HA!

Perfectionism!

These days planning is out of the question, I plan something and then BANG!
Jen’s down and out.
I’ve just learned in the last month to go with the flow, and just snatch the good moments, in between my
Every other day migraine, and stop planning ahead.

Learning always learning! :shock:

Gasp!..…

God really dose have some strange lessons for me doesn’t he?

Joy…i have asked myself this question many times over the years. I recall the very stressfull time (work related) that i was going thru right before the motion/vertigo began. I took some disappointments at work very personally…and taking my anger home and thinking about it way too much. Then the dizzy thing began to begin. If i could go back in time i would not have taken it so seriously and maybe even leave the job and try something else. Then again it could be a combination of stressors over my life time?? So i believe Stress could have triggered it.

Joe

Yes, Joe, when I got classical migraines, not one of them was other than stress-induced, not one.

One more thing Jen’s story reminded me about Topamax, for anybody thinking about starting it. Hain will go to 100 if needed but that’s the highest he will consider going without very good reason. He would rather see people around 50-75 mg. And he would rather see them well at the starting dose. He is a “go slow, stay low” guy.

Don’t think of 100 mg as a target dose.

JJ

Now Earl comes on the forum and tells me that he needed to go to 125 mg to make the difference. 100 wasn’t enough. 125 is what did it for him. That’s why you need a doctor to make the call.

— Begin quote from “stop spinning”

Some of us are Blessed! I don’t know where you are spiritually? But myself I gave my heart to my Lord and Savior a little over 9 years ago. I don’t know how I could get through this without Him to lean on and sometimes to carry me. I don’t want to sound all preachy but He tells to be thankful for all things, when I came down with this spinning, sometimes spinning like I just got off a bad carnival ride and sometimes worse, I had to remember to thank him :slight_smile: . It made all the difference in this world, because He cares for me. Some would argue that it not fair, well it was not fair what He had to do to save us from our sins.

I’ll just hope and pray that He puts us all in contact with a great healer.

— End quote

Yeah, Earl, it is hard to thank Him for this stuff, but I know first hand I need to. My husb has an inherited kidney disease & we’ve been down the road of kidney problems, dialysis, transplant, anti-rejection … years of yuck … I’ve always been able to see the good from that / the people husb & I have been able to witness to because of his situation. Now my dtr has it & she’s only 13. Can’t say I’m happy about it, but … I suppose we’ll cope with it & when I can’t seem to cope anymore, I’ll remember to let Christ grab onto my collar & drag me back up until I can cope some more.