Friends with Advice - anyone got one!

Specific Illnesses & Conditions VM/MAV
1

Hi all, haven’t posted in a while. Met a very close friend for lunch today. She’s very caring and considerate OK but… I got some advice on how I could ‘fix’ my ‘problem’ today! Can you believe it, it’s that easy, wait for it … MASSAGE … Wow, do I sound wrapped, gee, how could I have missed that all along, to think I’ve gone 2 1/2 years with a head like a spinning top, nausea a woman with morning sickness would be proud of, head fog, ice pick headaches and eye aches and motion sickness that’s out of this world, phonophobia, photophobia, bla bla bla bla bla, we’ve all been there! :evil:

I actually quite like massages and think they’re calming and ease tension etc, but how the hell can you massage my vestibular area, oh my god am I dumb or something :?

I’ve tried all manner of meds and complimentary therapies, aren’t we all trying things all the time. Oh boy, I just don’t think people can understand in the slightest, just how debilitating and life robbing this condition is.

Sorry all…feel better now, just had to vent! I am actually on the road to recovery but that’s cause I’ve found two really good meds: klonopin and Dothep (tricyclic antidepressant) and many visits to a very good neurologist who specialises in migraine and MAV, so I think I’m going to place my faith with him and suppose I should just nodd to my friend and say I’ll try it cause I don’t think they’ll ever get it.

Anyone else who’s got friends like mine (who I really love, just not the advice, maybe I’m a bit ‘touchy’!)? :?

Judy
(PS: hope everyone has been on the slow road to recovery and have had some ‘good news stories’)

2

are you kidding?? Judy, you haven’t heard my Lyme disease story. i can’t wait to get through my morning - you will LOVE this one. i’ll be back in a little bit. :twisted:

3

I am not very found of going to visit my wife’s family for this reason. They are constantly giving me advice on how to treat my symptoms. The one that got to me the most was the throwing yourself onto your bed backwards with your head turned one way or the other. I believe that is the epley manuveur? Of course there has been the chiripractor has the cure all. Personally, they make your back feel great, but that’s about it.

Then there is my mother who still has problems realizing that I have made a lot of life stile changes, especially diet, and keeps asking when I started that. Worse of all, she is a nurse and according to her, none of the changes I have made should be doing a thing for me. That’s all just a bunch of quack stuff.

Can’t forget about my ex-friend who told me once that it was all in my head and to quit faking. I quit talking to him shortly after that.

Brian

4

Lol !!! Brian - I too have family members who at every function look at me sideways and ask the same question - “Why do do eat that way?” I look sideways back at them, and reply the same old way “Because I feel better when I do”. They just shake their heads. Clueless.

Judy, it gets tiresome doesn’t it? “Well-meaning” friends who just don’t get it. (I’m chuckling now, but most times it makes me want to scream!!! :evil: )

Julie- by the way - how is your lyme disease lately ? (grrrrrrrrrrrrrrr :wink: )

Kim

5

Hi Judy,

I certain sympathize with you. Years back when the Vertigo was giving me alot of difficulty…one friend said i should try Antivert. That medication is useless (atleast for me)! Another friend said i should ware one of those wrist bands that people use when they are on a Cruise. (but i wasn’t going on a cruise)…lol But to be honest …i generally receive the silent treatment like they don’t know what to tell me and they just don’t get it! Some friends in the past looked at me like i had lost it or something. Of course that was when things were worse…but presently this illness is still very challenging.

Joe

6

Hi Judy,
I’ve even let a friend perform and a preyer on me from her japanese **CULT **she’s from, because it made her feel better! :mrgreen:
she calls herself a high priestest! HA! give me a break.

God help us all!!!

jen

7

Hi guys,
thanks heaps for adding some ‘balance’ (lol) to the argument, I’ve heard it a hundred times before but just when you think you’re getting past it, someone throws something stupid at you again. Really… as if we don’t have enough to deal with! Thanks for all your stories, I know we all have had to deal with the same garbage and at least I know that on this forum there is only ever positive thoughtful contributions so thanks as always, I know where I take my advice from - you guys and my neuro!

Another very close friend who is actually my daughter’s godmother, has unfortunately been down the breast cancer road, mastectomy, chemo and the works. She’s now doing really well and loving her life which I’m ever greatful for. But even from those quarters, she told me when she found out what I was dealing with, that just before she was diagnosed with breast cancer, she had a few similar incidents and that “I’d better watch out” :evil: . She lives 12 hours drive away so we usually correspond by email or chat by phone. Funny thing, I can’t bring myself to ring her anymore, a friendship that I’ve had for 30 years!

Thanks for helping me put things into perspective again, it was lovely to hear from you all, Brian, Joe, Kim, Jen and Julie. :stuck_out_tongue:

wishing you all continued improvement and much good health
regards
judy

8

Sorry i’m so late, i had an incredibly busy Monday. I hope Judy takes another peak at this thread.

I have some ex-friends who insist that my MAV is caused by Lyme Disease (LD). We have been dueling about this for several years. Since I actually have a diagnosis, instead of searching for a diagnosis (that’s when they really had me by the (you fill in the blank) I thought they would give it up. But nooooooo! Now they’ve become desparate, they are losing me to conventional Lyme-illiterate doctors whom they literally demonize :evil: I must be saved! And until i cut them off about a month ago, they were taking every demeaning opportunity to try to draw me in. A typical conversation would be “But I have a diagnosis, I’m being treated by one of the best MAV doctors on the planet AND I’m about 80% better than I was a year ago!”

These two have an answer for EVERYTHING! There is nothing you could suggest that I say to them that they would not have an answer for. The answer to this was “You are treating symptoms, but we need to get to the underlying cause.”

I tell them that I’ve had migraines all my life, “well yes, LD manifests as migraine symptoms” I tell them that migraine, panic and dizziness runs in my family. “see, your entire family is suffering because the medical community is blind to Lyme Disease.” I tell them we grew up in the suburbs of Chicago! They believe LD is everywhere!

And here’s the really sad part. They have a schizophrenic daughter. Guess what hey blame it on. Yep, they believe it’s Lyme Disease and they treat it as Lyme Disease. It’s no wonder to me that the girl is crazy :shock: The girl never had a chance.

Julie

9

Julie, that’s just totally ludicrous isn’t it, as much as you don’t want to purge yourself of these friendships, sometimes it’s just inevitable. It’s like a dog with a bone, they simply won’t give up until their ‘cause’ has been accepted, even to the detriment of someone’s health! If that were me, I’d tread very lightly if a friend had an illness and no way would I push my own opinions on others, particularly since my very own experience.

Well it sure sounds like I’m in good company guys, even though I know it and accept that there will always be someone who knows better, I’m damn pleased that I’ve listened to my neuro and this community of MAV’ers who offer the best suggestions out of a greater understanding of the condition through their very own personal experiences.

thanks guys, I feel so much more at peace :wink:
regards
judy

Julie: I’ve been kinda ‘off-line’ since my new kittens arrived with all their illnesses, thank god they’ve improved. How are you doing, you say 80% improved on what you were, that is absolutely fabulous, I’m so pleased and excited for you. Tell me what you’re now capable of doing each day, I’d be really keen to know. How the hell are we all going to dance on that table??

10

This thread reminded me of these statistics: nsf.gov/statistics/seind04/c7/fig07-09.htm
Truly scary stuff. 25% believe in WITCHES?! Hello!!

11

I hope I am not going to be considered the wacko of the group but I do have an open mind when it comes to some of the things on this list (eg. astrolgy, haunted houses, UFOs). I’m not saying that I think they definately do exist but I don’t dismiss them as completely impossible either. Perhaps this has been where I have been going wrong, maybe I’ll get my cauldron out tonight and make a potion! :wink: If it works I’ll send you all some!

Judy - My much-loved Aunty and God-mother said to me the other day “Come on Becky, you’ve got to sort this illness out, you’re living like an old woman!”. This made me cry; I KNOW I am living like an old woman but I’m not choosing to do so, its out of my control. The comment made me feel like it was my fault because I am not doing enough about the situation, but I believe I have done absolutely everything I can to get better. I have calmed down now though and have decided not to take it to heart, I know its because she cares and doesn’t know what else to say.

Becky

12

— Begin quote from “Beech19”

I hope I am not going to be considered the wacko of the group but I do have an open mind when it comes to some of the things on this list (eg. astrolgy, haunted houses, UFOs). I’m not saying that I think they definately do exist but I don’t dismiss them as completely impossible either. Perhaps this has been where I have been going wrong, maybe I’ll get my cauldron out tonight and make a potion! :wink: If it works I’ll send you all some!

— End quote

And I hope I’m not coming off too offensive, as that wasn’t my intention. :oops:
Astrology usually comes down to two things: selective memory, and vague statements. If your read today’s horoscope, and it turns out to be right - you think “wow!”. If it turns out plain wrong, you don’t give it a second thought, do you? :slight_smile:
The vague statements are even worse and could apply to just about anything. If you read all the horoscopes then you’ll likely find that some other sign fits you better than your real one!

When in comes to haunted houses, I too (as a hardcore science-guy!) am undecided… because of a couple of strange things going on in dad’s old house that none of us can explain. (Sounds in the stairs when nobody is out there, for one!)
And, UFOs all depend on how you see it, I guess. I certainly believe there is at least some form of life out there, anything else is highly improbable. I don’t really believe all the alien abductee stories, though. :wink:

And, again, I hope I don’t come off as offensive! :slight_smile:

13

Tranquility

Of course you didn’t cause any offense, don’t worry! I agree with you entirely that with any of these “paranormal” things, a lot of it is due to individual interpretation. However I do believe that may be some truth in some of them.

I’ll let you know how my potion goes :wink:

Becky

14

*There are more things in heaven and earth, Horatio,
Than are dreamt of in your philosophy.

~Shakespeare*

I think today Shakespeare would have used the word “science” instead of “philosophy”

Unfortunately, things like astrology, clairvoyance, etc. have been diluted so as to be understood by the lowest common denominator.

Astrology isn’t about telling your daily fortune, it’s an extremely complex system that the ancients used to orient themselves to the universe. We can’t even begin to understand it, thus we dilute it into something that we can understand. Doesn’t speak too highly of us.

Clairvoyance isn’t about walking into a witches office and having her tell your fortune, although some practice it that way and some fall for it.

Psychiatrists ask patients regularly if they have episodes of clairvoyance or ESP. It’s to determine whether a certain part of their brain needs a certain medication.

Catholics travel to a handful of places in Europe for healing by Mary. A friend of mine did it last summer and had a real experience. I don’t know about anybody else, but i want real experiences in my life, not scientific ones.

Reincarnation is a cornerstone of Hinduism and Buddhism. Do you think they are all wackos?

Here are my own experiences and you can kick me off the board for being a wacko. I am clairvoyant and have prophetic dreams. I dreamed of my husband before I met him. I dreamed of my townhouse before I bought it. I dreamed of that my therapist was going to die before i knew she was sick. I even dreamed that it would take 18 months. One night i awoke in in the middle of the night in all this turmoil. all kinds of colors, it was chaotic, horrible. And then I saw this tall white woman, dressed in white and her skin was white. She was about to step into a white circle on the floor. As she put her foot into the white circle everything vanished - the colors, the chaos, the circle, the woman, everything was gone, replaced by a cloud of peace. In the dream i thought to myself, this is what it’s like to be in heaven. The next morning I found out that she had died.

And don’t forget about the dream i had before my crash - that I was going to live on a houseboat.

I have garden variety happenings like: I start thinking about somebody and the next thing I know they call me. I could also tell you a boatload of stories of some really cool stuff that has happened, but I don’t feel like doing it on this public forum where I most likely would be misunderstood.

The explanation is: My veil to the unconscious is thin, that’s it, not so mysterious. I consider it a gift.

This is why i knew i would be a good candidate for Topamax. Topamax hits the temporal lobes real hard. If you don’t have a “problem” (is it a problem or a gift?) in the temporal lobes, it can make you as dumb as a box of rocks. But if you have this “problem” of clairvoyance, de ja vu, as well as other paranormal type things, Topamax is your med.

To get back to Shakespeare’s quote. I’m not against science. I’m educated as a biochemist. I just know, as Hamlet did, that there are more things in heaven and earth - science cannot explain everything and the smartest of scientists, Einstein, Bohr - the new physicists, knew/know that. That’s what makes Shakespeare so amazing, he was so freakin’ timeless.

Julie