posted
Hello everyone, I hope there's still someone awake here.. The time here is in the night but the time is always different.. Well, I don't know what to do just now. I've been self medicated with alcohol for a time now, not every day.. but very often. I don't want to shake any more, I can't take it!! And I don't show family when I shake, or when it's as worst.. or so. But I should, but at the same time I think.. "What good should it do?" but I guess it's better to show it than not.. but I can't, but now I have the thoughts to do it anyway, because I need help.. And I'm the only one that knows that.. Well, wanted to write down it with tears in my eyes. I can shake, but not this much anymore
-------------------- Undiagnosed, possible ET Posts: 26 | From: Sweden | Registered: Aug 2009
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posted
HI SWEDEN, PLEASE DON'T BE AFRAID TO TALK TO FAMILY ABOUT THIS PROBLEM, YOU MAY BE SURPRISED TO FIND THAT OTHERS IN YOUR FAMILY WERE AFFECTED WITH ET. I WAS ABLE TO HIDE MINE FOR YEARS, BUT NOW I EXPLAIN TO EVERYONE THE PROBLEM, TO PUT US BOTH AT EASE. GET DIAGNOSED AND THERE MAY BE SOMETHING THAT WILL REALLY HELP YOU. REMEMBER THERE ARE MANY MILLIONS OF US WITH THIS, SO YOU ARE NOT ALONE. HELEN/FL
Posts: 159 | From: florida | Registered: Feb 2008
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posted
Shad0w, you mentioned that your ET is undiagnosed at this time. My suggestion is that you, first, ask your family doctor for a referral to a neurologist. The neurologist should be able to give you a diagnosis, and if he can't, he can refer you to someone who can do so.
That's the first step. Then, they can begin to search for a method to bring your tremor under control. I've been told that alcohol does work on a temporary basis, but as you've no doubt discovered, it can be a dangerous way to control your tremor.
I've found that most people, when told the truth about my tremor, accept it in a matter of fact manner. Once they know, they go out of there way to help me whenever possible. Even kids will do their best to help you.
Get that diagnosis first. Then, you'll know what you're dealing with, and you'll have an idea of what your alternatives are.
posted
If you can have 2, maybe one, weeks of alone time with no need to do tasks where you must be as steady as possible, drink no alcohol during that time THEN see a neurologist to be diagnosed, afterwhich it should be easier to let your family see & learn you have E T.
That way they can't blame your shaking on drinking alcohol. They shouldn't anyway.
A couple of my family members still questioned my shaking as not due to alcohol--even though, if they had thought about it, they would have remembered that I told them I was 8-9 years old when I first noticed that my head & hands would shake--when I was stressed. Sheesh. (I now shake all the time)
Posts: 478 | From: Wisconsin | Registered: Oct 2005
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posted
Shadow, Many people have to deal with depression along with their ET.
I was treated for depression before I developed ET. It only added to my problems.
I currently shake. It is mostly my head with a "yes-yes" motion, but I also have some in my hands, especially my right. I am right handed.
I was treated for a week in hospital for my severe depression and then went to intensive outpatient therapy for 3 days a week for 6 weeks. I was then followed monthly and now I only go to the psychiatrist every 3 months for medication review.
ET is a life altering illness. I went from working full time (with lots of overtime) to only getting relief from my tremors when lying or resting back in a recliner.
See a neurologist and a psychiatrist if necessary. There are ways to treat ET. Treatment itself can be a difficult issue to deal with. It is usually try one medication and if it doesn't work, try another.
Some people with severe ET have had gamma knife or DBS (deep brain stimulation). Everyone is different and no one treatment works for everyone.
Talk with your family, they can be some of your best supporters. They may remember some else in your family that had tremors.
Sometimes people with ET isolate themselves. At times this can increase your anxiety and depression. I don't think humans are designed to be alone. My family makes sure I go places.
I am a Christian and God has helped me tremendously. I fought giving up the life that I had. I cried for months about my tremors and not being able to go back to work. After I finally told God that I would accept whatever path that He chose for me, I have begun to accept what will be a part of me until I die.
Dealing with newly diagnosed ET is like a part of you dying. You may have to deal with denial, bargaining, anger, and at some point acceptance.
I hope this helps you. Know always that you have people to talk (type) with on this forum. It may take a day or two for someone to answer, but I don't think anyone is left hanging.
You may find some comfort in some of the older postings on this site.
posted
First of all, thanks for your answers. I was just sitting drunk last night and waited for someone to answer but it's not very common with ET and so on.. So I figured it out that it would take more than a couple of minutes to get response. But I did, and I'm glad that I got respons in this thread.
I am going to see a neurologist, my doctor that I went to see in June saw that I need this and so on. He didn't listen very much when I was trying to tell about my medical history but he did what I wanted.. To let me see a neuroligist. And the wait time is just.. ohh, can't find words. Very long, the wait list to go there would be up to a half year from June.
I am waiting and waiting, I know you can't do much more when you need help and the help is on it's way. But I feel I'm loosing it, lossing it all. Drinking and drinking more and more, actually I am drinking right now too. It help me works as a normal person, not 100%.. not even 80% if I have to tell. I still shake, but not that much as I do without it.
I don't know what to do, I really don't know.. I've been having many bad thoughts lately, of ending my life etc. And I'm afraid it's getting to long, I don't want to die, I'm afraid of dying. But this.. it makes me wanna die more than anything else. I'm sure many of you out there that reads this know what I mean, I'm happy to not be alone. But it doesn't help at this time, so.. yeah
And I should add that my family isn't that "understanding" family or support, either my dad or my mum is someone I can get help from, in any way. It's sad, but it's the truth. :\
I'm suffering with all of you out there!
-------------------- Undiagnosed, possible ET Posts: 26 | From: Sweden | Registered: Aug 2009
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posted
HOW ABOUT TALKING TO AN AUNT, UNCLE, GRANDPARENTS, OR OLDER FRIEND, WE ALL NEED EACH OTHER, PLEASE TAKE GOOD CARE OF YOURSELF, LIFE IS WORTH LIVING, EVEN WITH ET. HELEN/FL
Posts: 159 | From: florida | Registered: Feb 2008
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posted
I want to do that, talk to someone about all this but I can't, because I'm in to much shame and I don't want to be that person that needs help, but I do.. But I really can't ;/
-------------------- Undiagnosed, possible ET Posts: 26 | From: Sweden | Registered: Aug 2009
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posted
THERE IS NO SHAME ABOUT HAVING ET. IT IS NOTHING YOU CAN HELP. HOWEVER, YOU MUST BE BRAVE AND TALK TO SOMEONE YOU TRUST. NOW WOULD BE BETTER THAN LATER TO DO THAT. YOU SOUND LIKE A YOUNG PERSON, THAT MAKES IT HARDER FOR YOU, BUT YOU CAN DO IT. WE'RE ALL COUNTING ON YOU. HELEN/FL
Posts: 159 | From: florida | Registered: Feb 2008
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posted
Shadow, There can be a good life with ET. Please wait until you see a Neurologist and he tells you that you have ET.
I think if you told your regular doctor about your depression, he might be able to help with some antidepressive medications or put a rush on your visit to the Neurologist.
Alcohol can help with the tremors, but it is just a temporary fix. Sometimes alcohol make make your tremors worse the next day. Alcohol is also a depressant. You need to stay away from it as much as you can.
I don't know about your health care system, but here, if you are in the hospital, your doctor can order a consultation while you are in the hospital and get a Neurologist to see you right away.
I am NOT saying to do anything to yourself to be put in the hospital. I would hope that your regular doctor would help you with the depression.
There no shame in having ET. If you know who Katherine Hepburn is, try to watch one of her movies. She co-starred a lot with Spencer Tracy. She had ET, but didn't let it stop her.
Just about every time I go somewhere, I now notice people with ET. I did not notice the shaking before I had ET. People without ET notice it less than you think.
There is nothing to be ashamed about with ET. People have illnesses like diabetes, Parkinson's Disease, tics, tourette's syndrome, and lung disease. ET is just another illness. If people do look at me when I am out, I either stare them down or explain about ET.
I was a Registered Nurse before ET stopped me from working. I am 60 years old and had been working with patients since I was 17, first as a nurse's aide, then as a LPN, then as a RN. It was devastating to give up something that had been a part of my life for 43 years. My point is don't give up just because life isn't what you want at the moment. Give it time. I cried from July 2008 until January 2009. Crying can be good for you.
Hang in there and write. Some people keep a journal of their day and difficulties with ET.
There is another poster by the name of Elsie. Go back and see if you can find any of here postings. She writes poems making fun of the bloopers we make with ET. She is funny, but you can see that we can make fun of ourselves.
posted
i hate to be abrupt...but... it is painful to say the least to read of a young person's plight with ET...if that's what it is... and it is interesting but distressing to read about another country's health care system and delays of your treatment.
i think it's very important for other readers to investigate ...for example Sweden's health care system to evaluate what treatment/meds/evaluation they are receiving (or should be/could be).
with that said..Shad0w you need to 1.hang on..you are not alone in your plight 2.you have more than one thing you're working with 3.what a great honor to say your oldest is 4...your child wants nothing more than you..even if you shake... 4.your family will support you...they will.....give yourself a chance...sounds like you're the one beating yourself up...
we all shake...it's taken me years to get used to it...no family support (ok...no family)...i'm still not used to it...but it is....
i don't know about Sweden...but get to the Emergency room if your depression starts grabbing you to the point of no return....think of how selfish suicide is compared to your 4 year old that wants their parent, no matter if you shake or not.
i wish you only the best...let us know...WE do care and YOU are not alone.
cj
Posts: 99 | From: florida | Registered: Oct 2008
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posted
took me forever to write my previous post...while i was writing lilred wrote an excellent post...please reread hers
Posts: 99 | From: florida | Registered: Oct 2008
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I didn't know you had a child. A mother is what a child needs! She might be showing her independence that goes along with growing up. But just think, who does she coming running to when she is hurt or afraid? I bet it is her Mommy. She needs you in her life to care for her, love, play with her, give her guidance. If you are not there, who will take care of her.
Children are very sensitive to their surroundings. If you are upset, then she will upset, too. Children like to do what an adult does.
How do you think she would feel if you were gone from her forever? How would she feel if you haaaaarmed yourself?
Children usually blame themselves. I don't think you can persuade them to think differently. They can think things like: If I hadn't gone to the movie, everything would have been okay.
Think of your daughter. We as mothers can do things that help them grow. Or we as mothers can do something that the child takes the blame and shame.
I am going off the computer for tonight. I try to check this forum twice daily.
posted
Shad0w, i'm sure it is difficult to be a 24 year old male in your prime and to be a father and affected by a combination of issues...hang in there and let us know what's going on. thanks, cj
Posts: 99 | From: florida | Registered: Oct 2008
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