Stress, Panic, Anxiety

Medication 💊 Benzo's
21

I’ll second Judy’s comment about lecturing.
What Rich has done is restate much of the trigger avoidance from Buccholz’s book, and common knowledge of migraine trigger avoidance.
He states that imbalanced brain chemistry–the sole cause to which he attributes MAV–which is NOT proven, can usually be reversed. Tell that to treatment resistant depressed patients.
His comment about hormone balancing is not scientifically valid.
While vitamin D is useful, and you can read the review article in the NE Journal, or read info on the Vitamin D council on line, it is not a “cure” for MAV.

By his own admission: he suffered a severe bout of viral labrinthitis–was hospitalized initially. If he read my posting about viral labrinthitis citing the NE Journal article from 2004–this illness leaves permanent deficits.

12 days ago Rich entered this board searching for answers, describing a course that involved a hospitalization, a complete work up, multiple medication trials–which occurred over 2.5 months, and since then he has queried the board, and now proclaims to have THE answer.

As Judy said, the members of this board have consulted with national and international experts. Many of us, have researched the medical literature (I’m a medical professional and have access to the medical school’s extensive library, and because of my profession, I attend national and international lectures, and have spoken with many experts.) This board is not intended for us to give medical advice. It is to share our personal experiences, as even the experts in the field are still attempting to clarify the disease process and its treatment.

Vertigo and MAV are multifactoral–MAV is NOT simply caused by a reversible “chemical imbalance”.

Spreading misinformation, or simply restating common facts–like how to control migraines with lifestyle changes–as though this will always result in a cure, is lecturing, and it’s misleading. And it demeans those of us who have experienced MAV despite doing all of the above, and more.

Rich has posted misinformation that has been removed by the moderator. He has clearly stimulated conversation, but he has also violated the rules of this board.

Cured and a national expert in 12 days.

This forum will only function if we respect its rules. As Adam has written to me, there is another forum, “The Dizzy Lounge” where all sorts of misinformation is posted. He created this forum in an effort to avoid that kind of spreading of misinformation.

Sharing our experiences is highly valuable. Telling others that we’ve found the cause and cure in less than 2 weeks is not.
Kira

22

Theories are great, I suppose it’s just how it’s delivered and how it’s interpreted. Perhaps we’ll beg-to-differ on that one.
Regards, Judy

23

Kira, your post beat me to the board, I was just replying to Tranquility’s post. I can only reitterate your post, may we have many, many more **INFORMED **discussions…and personal experiences. Cheers, judy

24

— Begin quote from ____

If you don’t have a brain chemical imbalance, you can’t have MAV. I think of it like this…if you don’t have cartilage loss, you can’t have arthritis. If you don’t have bone loss, you can’t have osteoporosis. Well, if you don’t have a brain chemical imbalance, you can’t have MAV. I hope this helps :slight_smile:

— End quote

I find statements like this rather frightening. I shudder to imagine someone new to all this, stumbling across information like that. Its not correct, and its not fair.

Your presentation Rich, stinks. I also have a major problem with the way your posts are constantly edited and deleted by you (not the moderator) at your discretion. Also not fair.

Just my opinion.
Cheers

Kim

25

Kira - Thank you for your post. It must have been very tiresome having to re-read all those past posts and summarize them clearly. That alone would have made me dizzy. I wondered and was disappointed that you had left out Rich’s latest “CURE!!!” and then I saw that the moderator had, in fact, removed it. Thank you Adam, for doing that. I went to bed last night fearing that any new members to this board over the last two weeks would turn away. I know I would. The threads have been so outside of the typical reasonable discussions of this board. Kim - you are right, these crazy theories of Rich’s would SCARE people!

Rich, Tranquility - (and BTW, Tran, Rich removed at least two of his most hostile posts before many got to read them) why do you suppose the mod did that? Rich has been doing exactly what Kira outlined so clearly - spouting theories, causes and cures, largely of his own making and claiming that if others were not well, they must not be following his LATEST plan for “perfection” - at the same time, jumping from one course to the next. Rich, if you have credentials we don’t know about, please educate us. I’m no dummy but I’m also no “brain chemistry” specialist.

Rich - the first time you approached me in rudeness, I responded with compassion. The next time, I told you what I took issue with. Your response was at first hostile, and then when others agreed with me, you removed the post and said “okay, I get it” Rich, you don’t get it.

I’ve only been a member of this board for about 9 months, but i’ve read virtually every post for the last three years (in order to learn) and not once met with any poster so unempathic, rude and demeaning. I myself rightly assumed that the members of this board held invaluable experience and information, and i wanted to hear about it and learn, as well as support and commune. But as I write this i realize i am throwing pearls at swine.

My limited experience with Johns Hopkins tells me that they follow a very systematic program which takes month before even getting to preventatives, so as not to muddy the waters. You should fit in just fine with them.

P.S. Neuro Cranial Restructuring!? I think I’ll stick to my Neti pot :slight_smile:

P.P.S. Apologies to any new members - we are not usually like this. If you’ll look back at posts pre- the past two weeks, you will find lots of good info to get you started on your path to healing.

Julie

26

A couple of points,

First I’d like to reiterate the point that Kira made. Most of the people on this forum seem to be very well educated on vestibular disorders. I know that over the past 3 years I have read nearly everything available on every condition which could possibly fit my symptoms. Many article I’ve read multiple times. I’ve seen the best doctor’s in this field from all over the US - The House Clinic, U of U, Mayo, Johns Hopkins, just to name a few. I’ve had to give several general ENTs (not balance specialists) detailed briefs on various conditions because I knew way more about the conditions than they did.

I don’t hold myself out to be an expert. I’m just a patient that’s trying to get better and I’m trying to take responsibilty for educating myself about my condition and trying to find an answer. Whats more I’ve discovered that I’m not atypical. Most of the people on this forum are similarly motivated and VERY knowledgeable about this condition.

It is a bit frustrating Rich that you make unqualifed statements like “If you don’t have a brain chemistry imbalance you can’t have MAV”. The best researchers in this field don’t purport to understand what causes migraine or MAV.

Having said all that - there are a lot of people who do respond well to life style modification and/or medication. Perhaps Rich is one of them and perhaps he’s found the keys that will turn his condition around. I hope so.

I also hope that I will be as fortunate.

Best to everyone.

Chaz

27

One of the terrible frustrations with MAV–along with its tendency to remit/relapse and cause a hidden disability–is that if you get several national experts in a room and ask them the best way to treat it, you’ll get several different answers.

At Mass Eye and Ear, there are brochures in the waiting room asking you to donate your temporal bones when you die, so they can try and figure out vertigo through your donated bones.

For me, this forum and the experience of others has been remarkably helpful. I can gather all the available studies in the medical literature, but someone sharing their experience can be so validating, and useful.

In this disease, as in life, uncertainty and change are the reality.

Here’s what the Johns Hopkins site on vestibular migraine says:
As with all chronic or unpredictable vestibular disorders, attention to the psychological consequences of the disorder is necessary with appropriate medications and consultations.
hopkinsneuro.org/vestibular/ … r_Migraine

When you are desperately dizzy, as I know personally, you search for answer. There are answers and information, and people get better–and sometimes they relapse as well–when we share our knowledge in a helpful and respectful manner we are a tremendous resource for each other.
My initial trigger was a viral infection, and when I read the editorial about Dizzy in Donnegal–I felt so relieved, I was not alone.
I’ll repost it here: NEJM July 2004

"Ten years ago, while touring the west coast of Ireland, I had a sudden onset of vertigo without hearing loss, tinnitus, or fullness in an ear. As a neurologist, I did entertain fleeting dark thoughts of a fatal basilar occlusion or brain-stem tumor. But without accompanying neurologic symptoms, the obvious diagnosis was vestibular neuritis — a disorder then thought to have a “viral” cause and a benign course. Therefore, I took no medications, abdicated the driving to my wife, and leaned back for several days of unsteadiness. I had full confidence that central compensation would allow for my rapid adaptation to even complete vestibular paresis. I** was wrong about the natural course of the disease, and I may have been wrong about the treatmen**t.

Old textbooks incorrectly stated that the symptoms of vestibular neuritis resolve within a few days or weeks. Rapid central compensation or peripheral recovery does occur and is sufficient to cause patients to stop complaining to their doctors. But when asked directly about residual symptoms months or even years later, more than half of patients report minor symptoms such as vertigo with sudden movement of the head, imbalance in the dark, or as in my case, inability to walk across a log spanning a moving stream."

We’re always learning, and we can be a huge help to one another.
Kira

28

Sorry, I see I upset the resident experts here. I won’t be contributing here anymore. I know what I need to do. As for the rest of you, I do wish you the best of luck. I hope when I check back here in a year, it’s a whole set of new people, because the rest of you are out enjoying your newfound lives. I only wished to bring something NEW to the table. But “new” is apparently a sign of quackery. I think I took the stories here, information shared by those here, and put the connection together quite well. But, others don’t seem to think so. So, good luck to you all, and I hope you get well

Rich

29

Once again, Rich posted a horribly hostile diatribe, only to delete it before many could read it.

In case he deleted the following also, here is a useful portion of it:

— Begin quote from “Rich1975”

I won’t be contributing here anymore.
Rich

— End quote

Maybe we can get back to some reasonable, compassionate interactions. I value this board so much.

Julie

30

— Begin quote from “kira”

One of the terrible frustrations with MAV–along with its tendency to remit/relapse and cause a hidden disability–is that if you get several national experts in a room and ask them the best way to treat it, you’ll get several different answers.
Kira

— End quote

My doc and Tim Hain trained, together, at Hopkins, under Buccholz and even they treat differently - differently than each other and differently than they do at Hopkins. My doc and Hain both treat with benzos. I’m not sure what they do at Hopkins, but Buccholz, in his book, is against them.

My doc does not start out with verap and prop, he goes straight for the Zoloft and then Topamax. I’ve heard from Hain patients on this board that he has gone straight for Topamax, and then Effexor. One board member who is being treated by Carey at Hopkins says he does follow the Buccholz program strictly.

This was all very confusing to me when I first started this MAV treatment journey. I think the way I understand it now is that recognition of the ailment, along with treatment options, is relatively new - in a way, we’re all guinea pigs. In addition, there doesn’t seem to be one treatment that fits all, darn it! What’s great for me might be hell for another. I hope our medication trials will help us, as well as help future MAVers.

Julie

31

Hi Kim,
to answer your question, yes I did have a stressful time just prior to my symptoms,
However didn’t start having pannic attacks until after getting vertigo.
I also learned to control them after a few years.
To be honest , I’ve never been one to handle my stress very well, mum always said I took after my Dad and was a highly-strung.
I do believe these things go hand in hand genetically and depending on how many life stressors we come across, can be triggered, my estranged father has epilepsy and has Mal de debarquement symptoms, just like myself.
I’ve just been reading about vertiginous epilepsy.
Some people suffer from only the vertigo and often don’t have obvious fits.

Dr T. Hain has an article about psychogenetic dizziness and other reasons for vertigo, it seems they are very similar to each other and it’s sometimes hard to decipher the differences.
One lady from another site, had psychogenetic vertigo (masquerading as mal debarquement) and is having cognitive therapy and is in recovery
also they have found migraine gene, I wonder if this gene could be also found in people with neurological disorders as well , say like bipolar ect. People with bipolar have what they call short gene.
My brother has schizophrenia, bought on by drug use, after being molested at age 6, he used drugs to forget.
my cousin has schizophrenia,
and my 1st cousin has bipolar with migraine disease.
And my biological father has epilepsy,
my family are alcoholics, in the true sense.

Yes you might be saying oh my family was hit the whole neurological ugly stick, and yes it was.
my Great Grand mother (fathers side ) married her 1st cousin.
thank god they’ve out lawed this, the Royal families did this from the beginning of time, how discusting.

That’s was why I questioned myself so often during this illness and worried so much that this could be all in my mind.
Until one day I saw an aura.

here is Dr Hains site.
dizziness-and-balance.com/di … /psych.htm

Warm regards Jen.

32

Thanks Jen, (and thanks to everybody that responded to this topic), clearly I’m not the only one whos had some tough times.

Interesting with you Jen, that your panic attacks started after your vertigo, except it really isn’t… Had I never had a panic attack before, I surely would have after the vertigo set in… Who wouldn’t??? :smiley:

But to be serious, nowadays, when I’m hit with the dizzies (and they are just spells now, thankfully, not 24/7 anymore) I immediately grab an ibuprofen, and usually within an hour it lets up. Sometimes (seems like its happening more and more now) I end up with a headache. (never used to), but always it seems, I end up being just totally and completely “drained” , almost like I could sleep for days.
But, 20 years ago, when I was battling just the panic attacks it was the same way. After the panic attack was over I was completely exhausted, and just wanted to sleep. The first time I had an “aura” (I had NO idea what it was - I thought I had a brain tumor or MS) but I remember telling my sister I was incredibly tired and sleepy, like after having a panic attack.

Anyway, I’m rambling, sorry. Thankfully I don’t have the panic attacks anymore, and its been two years since my last aura (right when the dizzies started). I can’t imagine whats up next!! LOL

Thanks again everyone-

Kim

33

Kim,

I think you’re headed in the right direction. The way I see it, and I sure don’t think I have it all figured out, my classical migraine state deepened into this chronic dizzy state. I would much prefer to go back to the cycle of aura, headache, hangover, than to be 24/7 miserable.

That’s interesting about the ibuprofen. I see it listed as a preventative. I’ve heard Kira’s daughter takes it when she feels things coming on and it sounds like it aborts it. I wonder if anybody has actually tried it daily as a preventative.

Remind me, Kim, are you taking any preventatives?

Julie

34

Jen,

My husband is a psychologist and treats people with psychogenic dizziness with great success. His cases have all been dizzy spells and clearly related to stress, even a stressful thought, or an emerging memory. Once brought into consciousness and processed, the dizziness subsides. If it comes back, then there’s more processing that needs to be done. For me, there’s more going on - therapy might be helpful in dealing with this, but it’s not going to make it go away.

However, coincidental to my big crash - my therapist died, my Dad entered Hospice, and I had just moved into a house - it was truly a move from hell. Everything that could go wrong, did go wrong. They’ll have to carry me out of this house in a wooden box.

Nice to see ya Jen,

julie

35

Julie is right about my daughter: she has experienced the migraine spectrum, with initial attacks of paroxysmal vertigo as a young child, migraine with aura in middle school, then a vague sense of “something wrong” at 15 on a daily basis, with a status migraine after a tonsilectomy–experienced as vertigo, then a hospitalization at 16 for an intractable migraine experienced as vertigo–and the pedi neurologist was stumped, while her ENT knew it was MAV immediately.
Ever since she was little and would wake with vertigo, timely motrin would cut short the attack.
Now she’s on daily nortritpyline, and if she gets a dizzy spell, some motrin and a nap (sometimes) take care of it.
Ironically, she saw my otologist, who asked her if imitrex helped with her dizziness–and when she answered “yes”, he told her that that made the diagnosis of MAV.
About a month ago, I had a set back, experienced as migraine stuff–light sensitive, motion sensitive, sound and smell sensitive–without much headache, but it brought on a lot dizziness and imbalance, that has lingered. I asked the otologist if taking some motrin/tylenol would help–and he said there was “no physiologic basis” for that approach.
I beg to differ. It works for my daughter. I have taken tylenol before I go to work, because that’s when it’s the worse, and it seems to help.
My husband gets migraines, and he gets briefly dizzy with them, and that’s when he knows to take the motrin or imitrex.
The many faces of migraine.
Chaz wrote about having your heart pound in the supermarket, when I had my big crash in 2003, I got acutely dizzy unloading the grocery chart–and called home and said, “I just had the weirdest panic attack for no reason in the supermarket.”–it was all vestibular stimulation and a preview of a crash that was brought on by a yoga move, that moved a rock of a crystal in my ear (BPPV) and then the maneuvers kicked up my MAV, and things were very rough for many months. The treatment–vestibular rehab, repositioning, made things worse.
Recently, I found myself reading old posts. And “Raven” talked about flares, where she would experience a lot of light sensitivity. Sounds familiar.
Kira

36

So why not take motrin or tylenol daily, as a preventative?

37

Hi guys, I posted yesterday, but I guess I hit “delete” instead of “submit”, so I’ll try it again.

Julie, yes I am on a preventative. I’ve been on Inderal (propanolol) for about 2 years. (This is where I get in trouble. Sorry Chaz, if you are reading this. You asked if anyone was having success with it, and I haven’t responded. I really meant to, but there was just so much going on around here. I will post under that thread later).

A while back, I think I read the post from Kira about her daughter taking ibuprofen, and around the same time while researching MSG, I came across that many people who are “msg sensitve” take it when they accidentally ingest it. So I figured “what the hey” and tried it with what I thought was pretty good results.

Julie, where did you see it listed as a preventative? I guess my fear is that it will quit working for me, or give me some kind of rebound, and I’m pretty careful about not taking it too much.

38

Plain acetaminophen, aspirin and anti-inflammatory drugs such as ibuprofen and naproxen do not cause rebound. But caffeine containing versions of them do. - Buccholz

Ibuprofen is also listed in a table of preventatives on page 112 of “heal your headaches” Ibuprofen: 400 mg tid initially. The table also states that it can be used intermittently for prevention, eg. around menses. And he lists as a vice: “not usually highly effective…”

I’ve seen it in numerous internet preventative lists, but can’t document them.

Julie

39

Thanks Julie! :smiley:

I’ll have to go pull my book out. When I read it a couple years ago, I devoured it - couldn’t get through it fast enough.

Thats good news for me. I can feel less guilty everytime I reach for that bottle now, and relax about it. I guess my only concern would be maybe it being hard on the stomach if taken daily???

Kim

40

Just FYI, many (most?) don’t agree with Buchholz that NSAIDs don’t cause rebound. In other words, most claim that they do.