Posted , 5 users are following.
Good to know I am not alone with this debilitating condition, but I do get frustrated when people say to me, "well can't you tell what sets it off?" I feel like I want to scream! I would just like it to STOP!
0 likes, 8 replies
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rich sharon17905
Posted
I was advised to start a diary, much like with migraine, to see if there was a pattern. I've gone over and over that, but to be honest I can't see any pattern emerging at all.
Still sticking to the low salt, little stress ( if that is possible, ha! ) healthy foods with no coffee or alchohol regime in the hope that that helps.
I absolutely understand what you mean about wanting it to stop...for me, if the tinnitus would stop I am sure I would feel ten times better.
You are right though, it is good to know we are not alone, and although it can be a struggle to work through all the varied advice on this forum, it's been a huge help to me.
Chin up. Rich ( NHS SW UK )
SoCal.T sharon17905
Posted
I feel your pain! There have been many days I have cried and felt helpless with this gray cloud that will be over my head for the rest of my life! My only comfort is talking to others here who can relate beacause no one can ever really understand how we feel. I have 2 kids and was wanting a 3rd until this diagnoses --- now it's all I can do to smile and drum up some energy to be the mom they need much less have any more ever! Keep in contact with these discussion groups SUPPORT and talking to others who relate is def helpful...
sharon17905 SoCal.T
Posted
It's so hard when others do not understand what I go through, the constant worry am I going to have another attack, why am I having them so often. I'm glad I have this discussion group, with those who truly know the full extent of this debilitating disease.
SoCal.T sharon17905
Posted
No matter how many details you give to people or even someone witnessing an episode does not even give them a clue to how we feel Day to Day. The anxiety the worry the uneasiness... never truly knowing what sets it off and driving ourselves mad trying to figure it out. Even our "good days" are foggy and not 100%.
sharon17905 SoCal.T
Posted
yolanda29073 sharon17905
Posted
I feel your pain, I feel so grateful that I found this forum because I just felt like I was going downhill fast. The negativity in my thoughts...the thinking that there is no light at the end of the tunnel, feeling like nobody gets it because it's not just a physical thing, the constant worry that you are going to have an attack. 😩😭. And because of that lack of understanding I keep having to have meetings with HR and explain what is going on so as not to lose my job.
sharon17905 yolanda29073
Posted
sharon17905
Posted