Most days I have to concentrate hard to hear what people are saying,
I’m so tired I can’t think.
Even the words I write are unfamiliar to me.
I feel like I have Alzheimer’s every day.
I decided to take the plunge and have a weekend away for my sisters birthday, I’m paying for it now, and I took xanax for the whole weekend and now I cant sleep.
My head is a mess, it was so hard trying to stay sane while people were talking over each other laughing and moving about.
Trying to make eye contact with every one in the room nearly did me in.
NOW Every time I drop off to sleep I jump as if I’m falling, and that’s just as I’m drifting off.
Not happy!!! Maybe it’s best I just don’t try to go out again.
I’ve given up everything due to this MAV and I’m bloody feeling all my losses in a big way. :twisted:
All you did was try to do something normal and fun and this MAV monster gave you a slap.
I sure am familiar with those symptoms and they are despicable, especially when all you’re trying to do is drift off to sleep when you haven’t had a full night of sleep in how long? It’s bad enough to have to deal with these symptoms, but to be sleep deprived on top of it is truly hellish - and crazy-making.
And I know you don’t want to hear this now, because right now all you want to do is sleep G damn it! But you will get there. You’ve found some meds that have given you some improvement and you at least ventured out, just too soon. The people at JH are so supportive of their patients when they call with problems with meds, or relapses, or other discouragements. They claim they have successfully treated thousands of people with MAV. I know you’ve got another med up your sleeve and I pray it will give you a little more improvement, just like the others. One step at a time.
BTW, thanks for the Pitty Party - The first four lines sounded like poetry - i thought maybe you had written a new song
They say that a good night’s sleep is Mother’s Nature’s gift to us and i pray that she has one in store for you…
Hi Jen…i have been where you are now and i have made some improvement so don’t give up! For some of us the condition decreases as slow as a snail’s pace while others folks are luckier and heal quicker. I have been dealing with this for 15 years…and the brain fog use to be much, much worse and now it still there but less and more manageable. I Also identify with trying to talk to more than one person at a time with your head going right and left, etc. That is still difficult for me so when i am talking to more than one co-worker i try to keep my head still and instead of making my head go left and right to say no…i just say the word…same for Yes,no more up and down. If your on a fair amount of medication…that can also make you feel very tired and interferes with concentration. Watching your diet and stress is also extremely important!!
You will get better…please be patient! In time you will find the right medication and hopefully a caring doctor.
Hi Jul and Joe, well my glass was half empty last night, as you can see I was angry, ok so I took another neurontin and eventually fell off into deep sleep
3 days of no sleep makes me very angry depressed girl
Today is a new day and I’m smiling again!
Tonight I start my topa. I’m sending out some good strong vibes into the universe.
I think avoiding doing normal stuff is a good idea, until I’m a little more stable.
The meds have helped so much I thought I could do more, wrong!
It’s all-good.
Baby steps today hehee!
Has anyone used this Vinpocetine for brain fog?
luv you guys thanks.
Jen
I started taking vinpocetine a few weeks ago, and the stuff has worked for me in a big way. It clears the ear pressure to a certain degree, and does reduce brain fog. This is somewhat curious to me because I had a bad reaction to gingko biloba 2 years ago, and stopped taking it almost immediately.
Vinpocetine has been used by Russian astronauts to combat vertigo.
Hi thats so good , I’m glad it’s working for you, hey I dont need it now ,
I Just started topa last week and My brain fog has lifted really well. I’m so happy!!!
I had to bite the bullet, and I’m glad I did.
jen
MSDXD- What kind of reaction did you have to gingko?
I took it for awhile, but I was taking so many supplements I didn’t know what was helping and what wasn’t, so it was one I stopped first, and didn’t notice a difference, so never bothered to re-start it again.
I have never tried vinpocentine, so I can’t help you there.
I can say that I feel for you regarding your weekend. My family is full of nurses and physical therapists, so they are very understanding to my plight. My wife’s family on the other hand think that I am a bad person because I am always trying to hide, sleep, or leave early, and get very tempermental when they refuse to let me do any of the above. I will not be talking to them ever again after my last visit when they said that I should divorce my wife because I am such a horrible person. If they could only be in my head when all of that chatter is going on in twenty different directions always in a room that is to small for everyone or if the room is big enough, it is acoustically terrible and makes everything worse for me. Maybe they would understand why I try to hide or leave early, or simply not go to their gatherings.
They are always giving me bad advice like “you know, such and such had a problem similar to yours and they took ___ for a few days and all their problems went away,” or “do you think that maybe it is all in your head and if you were to…,” or other totally unrelated magical cures. They all think they know the answer to my plight, and think that I am the reason that my wife never goes to any of their gatherings. They don’t stop to think that there is a family on my side that we have to gather with, not to mention our own family of four, or that we have a life of our own. No, everything is my fault, and my balance problem is all in my head.
OK, did I do enough pittying to join your party?
Brian
Dear Brian,
This is so typical isn’t it, It peeves me big time to hear this type of hurtful stuff over and over again, as Juls said, If they had to live in your shoes for a day, I’d like to see them handle working, looking after a family and trying to be a good husband, Kama!!! let’s wait for the kama. I don’t wish any bad for anyone, but when people have no heart and could dare to say that stuff, they need to cop something back.
I hope your wife stood her ground with them.
My mother won’t ever be saying anything bad about my hubby again or she will be a very very lonely old lady.
grrrrrrrrrrrrrrrrr
Brian , I was told by another person on another dizzy site , that her sister said, just eat a red apple a day and it should go away???
what tha
who was she snow whites mother.
geeesh!
jen
MSDXD- What kind of reaction did you have to gingko?
I took it for awhile, but I was taking so many supplements I didn’t know what was helping and what wasn’t, so it was one I stopped first, and didn’t notice a difference, so never bothered to re-start it again.
Just curious - thanks!!!
Kim
— End quote
Quick burst of pressure through both sides of the jaw and to the top of the head…followed by hours of migraine.
Pity Brian, no… I don’t think any of us on this board feel that. But we do feel EMPATHY cause we’ve lived it too, same as you and we UNDERSTAND you. And RAGE Brian cause we’ve all felt the IGNORANT, SELF APPOINTED PROFESSSIONALS THAT THEY ARE NOT!!! Come live in our skin for a while and spin around the room WITHOUT MOVING AN INCH!!!
I read your excellent post early this morning Brian and have been brewing my emotions all day, can you believe it!!! Must have hit a chord. What do these people think out there in the big wide world, that we are happy living in this state with all these restrictions?? As Jen said, Kama… none of us wish it on another soul because we’ve lived through such torture and still try to find the time to look at the bright side of life and have so much empathy for each other’s journey, but sometimes - just sometimes I think that Kama is exactly what these know-alls need a taste of. I don’t think they’d cope nearly as well as this bunch of fabulous people do on this forum. Do they honestly know how difficult our progress has been and continues to be. What we need is support from our loved ones, not judgement!!
And Jen, oh my god - an apple a day!!! It’s times like these (and I’m a very calm person) that I feel like committing a crime!!! (lol) (ps: not really cause I’m full of jello ). Well Brian, we hear you and we think you’re doin’ a great job managing your family and work, isn’t it hard to bite your tongue, particularly when it’s family who’s concerned.
Back to Jen… I’ve been there too and have undertaken a couple of weekends away with hubby, tried eating at restaurants and having romantic walks through the city. Dismall flops unfortunately cause I really wasn’t well enough at the time and became very disheartened so maybe it’s just a bit early yet and your time will come to shine. I’m on the verge of trying another weekend away as quite a few months have passed and I think I might be better up to the activities and might even just enjoy them, I’ll be sure to let you know when that happens. But improvement is all good, it’s just sometimes at a snail’s pace as Joe sais, which brings with it frustrations. Another lesson in life, my goodness, how many more do we need!! (yikes!)
It’s times like these (and I’m a very calm person) that I feel like committing a crime!!! (lol) Judy
— End quote
Good line - Especially since your father was a law enforcer He’d be proud of you, Jude
What can I say, people are stupid. And being sick brings the stupid out in them, doesn’t it? people sure have treated me differently with my illness. Some have demeaned me. some have walked away, not knowing how to deal with me. some have made the kind of ignorant suggestions that Brian talked about. Our best (well, former in my mind) friends INSIST that I have Lyme disease. They have Lyme disease and they are obsessed with it. And there is no arguing with them. I tell them I’m getting better on my meds, which are no Lyme disease meds - yes, but you’re only treating the symptoms. I could bore you with more arguments, but i won’t. it’s truly insulting.
I showed a number of people the ABC video that Jenny posted. This couple were the only ones who never responded to it at all. When I asked them if they watched it, they said, Oh yes, but those people are better when driving, you’re not better when driving. And your symptoms weren’t preceded by travel. And they don’t have a migraine. I wanted to rage and cry (i often have that combination of emotions) at the same time - i’m looking for empathy and what do i get - they blow me off. And these are our former best friends.
i’m gonna stop now because this is sounding stupid and making me mad.
All i really wanted to say is - what I’ve learned is (cause maybe i’ve done some of these stupid things myself in the past, after all, i’m no saint) - don’t ever judge somebody else until you’ve had a chance to walk in their shoes. And since you can’t actually walk in another’s shoes, let’s aphorism this into: “don’t ever judge others”
which leads to: don’t tell them “what your problem is…” don’t tell them what the solution is. How about just try to be a friend and be there with them, walk their path with them and let them walk your path with you. Think what you want about them, just know when to keep you mouth shut.
