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Deanna
- 41, Female
- Jacksonville,Florida
- United States
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Deanna's Discussions
Head 'pain'...not head ache
16 Replies
Started this discussion. Last reply by heykelley Nov 1.
Deanna's Page
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I am waiting for that diagnosis to be offical by the Neuro. I had that long 3 hour, $1,000 memory test. It showed my main part of my brain and two other parts are affected. I was being tested in plans for DBS. That's not going to happen with how b...
THAT is what marriage is about! You hit the nail on the head.You are blessed! Love has to be unconditonal. I was married the first time a week after turning 18, got on the pill and gained 30 lbs. To make a long story short, when it came to the end...
Tahoe, this is great information!! Thank you so much. I will look into the occipital nerve and try to find a doctor who will help me.
Yeah, apparently my doctor thought I had dystonia and then changed his mind. It was all very confusing for me, b...
Profile Information
- In the online health communities I participate in, I'm:
- a Mom/Mr. Mom (I’m here for you)
- Another place where I contribute is:
- http://travelpod.com/members/deannac7
- Which is:
- my blog
- It's:
- my personal website
- You can also find me at:
- http://facebook
- This is:
- my personal website
- More about me (my health interests and reasons for joining WEGO Health)
- I was diagnosed, finally, with dystonia. At least there is a name for my problems and a doctor acknowledges it.
I am a on the go person and this is going to slow me down enough, but I have alot of growing to do. Being so independent is what am I used to. Asking for help from even my hubby is a whole new world for me.
Deanna's Blog
To Botox or not?
Okay ladies and gents, I need some feedback.
I have Generalized Dystonia. It is some visible in my neck and also pain some same side in chest. My Neuro wants me to get the botox. Its tomorrow. I don't see why I need to waste money we don't have on something that is not twisting or turning and rarely hurts. He says you treat it before it gets that way.
Please give me feedback. I have been struggling inside as the days get closer to it.
I had gobs of blood work last week. I may have Mitrochondr… Continue
I have Generalized Dystonia. It is some visible in my neck and also pain some same side in chest. My Neuro wants me to get the botox. Its tomorrow. I don't see why I need to waste money we don't have on something that is not twisting or turning and rarely hurts. He says you treat it before it gets that way.
Please give me feedback. I have been struggling inside as the days get closer to it.
I had gobs of blood work last week. I may have Mitrochondr… Continue
Posted on November 17, 2009 at 1:34pm —
Another dystonia day
Headaches, one finally ends and another begins not far behind.
I did nothing big today other then get out of the house; had lunch with my son, went to the local college to get him set up for classes, bought much needed groceries and whosh, the headache I have been trying to get rid of.
Oh and the throat spasms are back...I hate them most of all. It hurt to even speak, makes them worse. Then feeling the spasms in my cheeks, so ridiculous!
My son says I keep repeating stuff I had just told him.… Continue
I did nothing big today other then get out of the house; had lunch with my son, went to the local college to get him set up for classes, bought much needed groceries and whosh, the headache I have been trying to get rid of.
Oh and the throat spasms are back...I hate them most of all. It hurt to even speak, makes them worse. Then feeling the spasms in my cheeks, so ridiculous!
My son says I keep repeating stuff I had just told him.… Continue
Posted on August 26, 2009 at 11:25pm —
Artane and drowsiness
I might have asked this before and if so, I apologies. I don't remember if I did.
Does Artane make people extremely drowsy, out of it, drugged or is it the Dystonia? I can't figure if I need a different med or is its the disorder.
Deanna--offical General Dystonia..head to toe...really bad throat spasms!
Does Artane make people extremely drowsy, out of it, drugged or is it the Dystonia? I can't figure if I need a different med or is its the disorder.
Deanna--offical General Dystonia..head to toe...really bad throat spasms!
Posted on August 12, 2009 at 10:42pm —
Throat spasms?
Can throat spasms cause a very sore throat feeling? I have had them increasingly and my throat is so sore. I have also discovered if I get upset about something, it starts spasming also. Other then never being upset, is there any thing to calm the spasms in my throat?
Deanna
Deanna
Posted on August 10, 2009 at 7:10pm —
Forgetting Normal
Today, I felt normal. Normal? Yes, ok, my old normal. The normal I used to be, before Dystonia. The normal I'd love to be again. I have heard that your health is priceless. Oh how true that statement is.
My mom has said,"A degree is something nobody can take away from you." But, health, well, I wish it were true about my health.
I was never driven to be a career woman or do anything in the work arena. But, I was looking forward to a career once my kids were raised....but, God has another plan… Continue
My mom has said,"A degree is something nobody can take away from you." But, health, well, I wish it were true about my health.
I was never driven to be a career woman or do anything in the work arena. But, I was looking forward to a career once my kids were raised....but, God has another plan… Continue
Posted on August 7, 2009 at 12:34am — 1 Comment
Comment Wall (17 comments)
- At 6:50pm on September 29, 2009,
Dee said… - Deanna,
Are you having tremors since you started taking Lyrica?
- At 1:20pm on August 19, 2009,
asburyparkangel said… - My dear sister, I will be praying for you! I'm so glad to meet you. Please check out Andrew Wommacks website. He's given an amazing month of teaching on divine healing & I learned alot of things I was doing wrong as I pray for my healing recovery.It's God will for us to be well. He also has a great DVD about a young woman who had horrific seizures & toxic overload, NIKKI O'Shinsky, who is Healed , recovered and a living testimony! Check it out & feel free to email me. Hugs,angel
- At 10:38am on August 12, 2009,
karen said… - oops..sorry about that deanna..took off the comment that to sue that i accidently put on you page..one of those brain meeting the fingers things!! ;0)
- At 3:32am on August 5, 2009,
Lisa Bratcher Carley said… - Hey Deanna,
I know this is a long time coming. I am so sorry I had not looked at my page sooner. You are right about being a people please-her or him. I think of it this way, we can only give so much. So imagine a beautiful pitcher of water on the table (the pitcher is full...the pitcher full with water represents you), around the pitcher are glasses, some small and some big....well now you need to fill all the glasses (all the glasses represents the people that you have given to each day). After you fill all the glasses you have now given all of yourself to others and you have nothing left for yourself. When this happens (you giving all the water away...the water is a metaphor of you) everyone gets a piece of you EXCEPT YOU!!! This will lead to being angry, sad, mad, alone, and every other emotion that does not feel good. It also leads to you snapping at others even when they didn't deserve it.
SO THE BOTTOM LINE: the next time a person wants something from you and YOU KNOW YOU EITHER DON'T WANT TO DO IT, OR CAN'T.....A Great thing to tell them is 'to thank them of thinking of you, but, at this point I have to many things right now and cant take anymore on, but perhaps next time' If you go in a direction like that there will be fewer and fewer glasses to fill (metaphor of people taking to much of you). I find that helps. Also about our hubbies...sometimes they get the brunt of things. There is a great book out there from Dr. Laura Schlessinger, I would pick it as either my favorite or 2nd favorite. The books name is "The Proper Care and Feeding of husbands." I know that sounds strange but it truly does empower woman in the relationship, the reviews on it are wonderful and well worth it. There is also another one called, "The Proper Care and feeding of a relationship." Just thought that might help/reduce stress!!;)
As far as who will get the most of you, of course YOU and then your family,(if you don't take care of yourself, no one else will) if there is nothing left over then we just have to be kind with saying no to things .BY THE WAY YES IT IS HARD THE FIRST TIME TO SAY NO, but it gives you a big release!
Also as you put it, you are an empty nester, it is hard, but now you can make sure you have time for yourself, make a spa date or do a mani/pedi with a friend during the day.
As a woman, we really bring things together in life and our families and that is a large responsibility!!! Take things a step at a time. Also the books by Dr. Laura Schlessinger are great in this area where we can do little things that will help peoples relationships and it truly can change your relationship with your hubbie for the better and reduce stress.
I hope things are going better
hope to hear from you
liz
- At 9:07pm on July 27, 2009,
Quirina said…
- Thank you for the welcome Deanna! By the way I'm doing great, as my neurologist says "I'm kind of a miracle" but it was a "long" road I had to walk. For 95% I function normal, meaning I need Botox every 4 months. If I can help anyone it would be a huge honer!
- At 10:37am on July 25, 2009,
Deanna said…
- I think you already are since I am writing you from the Dystonia site, as far as logging in.
- At 11:06pm on July 24, 2009,
Jodes said… - Nope, 'bout 7 years ago. (I sent you a message with the details) Would you happen to know how to log on to the forum with the info on Dystonia? That's what hooked me. :)
- At 10:47pm on July 24, 2009,
Jodes said…
- Thanks for the welcome, Deanna! I havent' joined in any support groups or blogs before, so this is nice... at least good to know that I am not alone. :)
- At 10:57am on June 17, 2009,
Thorns said… - Hi Deanna;
Dystonia is a movement disorder not a disease, if you were to look at your brain there is no sign of disease like parkinson's or huntington's. If they ever come out with a cure for dystonia, your body would go back to normal without the movements, where the other two would still have the damage to their brain even after a cure . Thorns
- At 3:06am on June 14, 2009,
Canary3 said… - Hi Deanna,Google myoclonus then you will find NINDS. info there concerning stim-sensitive myoclonus and others. Says researchers spec. that there is an abnormality in the receptors for serotonin and GABA which helps the brain maintain muscle control. Have not heard of staging of myoclonus just diff. forms. Just learning how to blog ect. really neat. Getting carpel tunnel in wrists from typing along with dystonia. But using this computer will open a whole new world. I now know I am one of many dystonians trying to mainain a somewhat norm. life. But boy it's so hard. Sometimes taking a step forward is like treading water at the same time. Have to push and push. I dream of everything I want to accomp. in a day, but then it's only a dream. I wish so much to turn back the clock, 6-12months ago. I have a will that is strong but get fustrated trying to find new ways to do everything. Energy is so precious,must use it wisely. Do you sleep well? There is not enough hours in a day. It takes so much time just to shower and floss my teeth. Very diff. when you have dystonia in hands and mouth. Hair is another prob. Can't lift lft arm
diff to style with one hand. Hair becoming thinner due to Rx. Taking SeptraDS for a couple of bladder infect. Hair is everywhere sad because daughter getting married in Dec. Have been consid. DBS. Trying to find neurosurg to agree. Just had blood drawn for DNA testing to rule out
Dopamine Responsive Dystonia. Results should be back,but Dr. in Italy.
Treated last two years with DRD,GEN.dystonia. But all of a sudden lft shoulder and arm started to contract. If test is Neg. I should be a better candidate for DBS. This is a big decision,don't want to be in a w/chair but afraid of dying during oper. I'm 52,have asthma,and some A.heart disease. I know dystonia can effect my breathing and heartrythm. As for Botox, had injec. in neck every 3 months for last 2 yrs. Cancell last tx. Dr. not happy, one side of face perm drooping compar to other side. Wierd looking wrinkles appearing. Dr. will never use leftover Botox already paid for in wrinkles that he is creating. I feel like an alien @ times. No wonder
dystonians hide from public view. You stated you have some cramping in your feet,prob. due to dystonia. Also medication can cause edema,swelling of ankle area, My feet burn and ache wnen swollen.
Hope I could answer a few of your ques. Take Care.
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