At the end of year my husband had me put in a pshyc ward, I was in a deep depression and as we have no family near he wanted to shield my state from our child. I believe I have been showing symptons of Huntington's for some time. When I was in hospital they put me on exfexor xr which I had taken a year and half earlier .....this time however I was given the generic brand. I felt like my head and body were on fire. I wanted someone to unzip my brain and pour a glass of ice cold milk over it. I felt like I had electricity running through my body. i Espcially felt a tingling prickly sensation through my arms and upper back. I told the doctor but he said to give it some time. After being released I started seeing a phyciatrist, he took me off it only because I had started to lower the dose and but me on lamictal which I continualy vomitted on about three times a day.. I took the liberty to take myself off that too. Then he started on Cymbilta.....and I felt terrible. I know I have to face reality but I am so scared. I am first of 9 others in my generation at risk of this disease. My Grandmother had it and was diagnoised at 50. My family are all really upset with me because my father is in ok health and in general don't want to discuss it. I am so emotionallly drained and tired and at a loss of what to do..........Honestly don't know how I'll handle a positive diagnosis.

I'm sorry you're having such bad depression. Whether you have hd or not isn't known, but what you do know is you do have depression, and you really need to get help for that. You need to not just for your sake, but for the sake of your husband and child too. Depression is not something that anyone has to live with, and it is so disabling, but, with perseverence, you can beat this. There are so many meds for moods, that it can take a lot of trial and error, but it is well worth it to not give up until you find the right meds for you. Can i ask why they released you from the hospital when you still weren't feeling well? I hope you will stick with this and get some help, it will help you and your husband. Welcome to the forum, and hang in there

Welcome to HDAC, Maree. I am so sorry that you are suffering in this way and I am also sorry that your family of origin are being such inconsiderate, head in the sand, pains in the butt!

I think what has happened is that you are buying into their fear. I don't want to minimize the difficulties of having HD, if indeed you do have it. But if you do, your experience will not be the same as your grandmother's. I know it's hard to believe since your doctors have not yet found that right medications for you (and that's because there are so many individual differences in how people respond to psychoactive drugs), but the medications are much better these days. In addition, there is a whole online community of people with HD, at risk for HD or who have loved ones with HD. We support each other and share information and we talk about our concerns. We also have great hope for the future. There are a number of drugs in clinical trials right now with two dozen more in the pipeline. We are getting very close to therapeutics to silence the HD gene which could turn out to be a virtual cure. We can't know how soon treatments will arrive but all the possibilities mean that even with a positive gene test, we no longer can predict our future; it just might be a lot healthier than a positive test has meant in the past.

That said, you may very well not have Huntington's Disease. In the years that I have been active online I have heard from many friends who were in the process of testing that they were absolutely sure they have the disease and more than half the time, they have tested negative. Depression and anxiety can mimic the symptoms of HD. As Barb said, you need to get that depression treated. I'm surprised that you haven't been prescribed an SSRI antidepressant such as Lexapro. I'm not a doctor, but people with HD tend to do very well on SSRIs and they have the advantage of boosting brain derived neurotrophic factor (BDNF), a protective protein which is reduced in HD brains. Of course you may not have HD, but SSRIs are still very helpful for many people. I personally take Lexapro whenever I get depressed. If the SSRI doesn't do enough to lift the depression, some people also take Abilify.

I know you feel really bad right now, but I know you can feel better and once you do, you can consider whether it's a good time to test. If you do test positive or get a clinical diagnosis of HD, you will have the energy needed to fight it. And you'll be in very good company. Keep posting and let us know how you are doing.

Barb and Marsha have excellent advice for you. I can imagine how terrified you are which provokes high levels of anxiety for you as well.

There are so many antidepressants out there and you need to find the one that works for you. Many people have depression whether or
not they have HD. An antidepressant can make your life so positively different.

On the HD - you may and may not have it. Even if you were to test positive it doesn't mean that the symptoms you are now exhibiting are HD.

I hope you find an antidepressant that works for you soon and I think you will see a huge positive change in your life.

Thank you all for responding.Even as a little girl and I was unaware of Huntingtons I always sensed the fear through my parents who had their children not knowing. I was a teenager and would often sleep in my parents room shaking in fear till I fell asleep not knowing exactly I was afraid of. I was told at seventeen years old.. So I wonder how I change a mind set I have had my whole life. Where does that strength that you have come from??????? I went to a couple of support meetings and the man in charge just went on about how they have been saying a cure is just round the corner but in his long period of working with the disease he doesn't see a cure soon. I didn' t feel too supported. (Barb, they only had me on a 72 hour hold in hospital and then released me as an out patient.)

Fear is normally due to the unknown.

Strength comes in many ways - through self, through God, through help, through friends as you will have here, through time, etc.
Something to remember is "take one day at a time". Enjoy each day for what it is regardless of whether a person has or does not have HD.

I do not have HD but my husband does and my children are at risk. I have a beautiful family in them and wouldn't trade my family for the world.

I also look at the glass as "half full" rather than "half empty". We can choose to live enjoying and appreciating each day or living in fear of each
day and the "what ifs".

A mind set can be changed but it takes time and want to which I think you already have. A good first step would be to find a good antidepressant
for you. Next, you might write down or look at all the blessings you have and dwell on those rather than the things that are the more negatives
in your life. If you don't already do so - get out more often especially outside. Find things that make you and your family laugh. Laughter is
so very important. Keep busy so not as to have the time to think about things that may make you more depressed or negative. I am not
a "Polyanna" but I try to look at things in a more positive light - we all have bad days including myself - but fewer with a positive mindset. Everyone has bad days with or without HD - that is just life - but there are many more good days than bad and alot of it comes from mindset.
Don't dwell on HD. Be knowledgable and aware but don't make it your life. You may not even have it. Those who do - they are people first
who happen to have HD just as people who have MS, Parkinsons, cancer, are paralyzed, etc.

You have found a good site here as well. People who have cared for those with HD, people who are caring for people with HD, people who have
HD - people just like yourself and everyone is so willing to help each other. This is a wonderful website for support and an awesome website
for questions. I have found a wealth of information from people on medications to use that an average dr is not aware of which have helped us
alot, however, as with any medications you have to "trial" them. Some work for others while some do not - just need to find a right combination
and it is possible.

Good luck to you - you will get through this and life will be better.

Wow, I didnt think that there was anyone else out there going through what i am right now. I can relate to what you are feeling. My grandmother died of this when i was young maybe 18 or so. My father and sisters have never been tested. My father is showing obvious signs of HD and over the past year has uncontrollable movements and everyone in my family thinks he has it but no one wants to say anything. He refused to get tested all those years ago and instead everyone thought he had tested neg. Now it comes out that he has never been tested. He also says that he is making those movements himself, there is just no way and if he is making them how come he cant stop them? I am the oldest (36) of my siblings and have 2 brothers. I am insistent upon getting tested and everyone in my family objects, and if mine comes back positive then my dad will know etc. He is going to know either way because he has the disease if he accepts that or not is a different case. But i have to know. I would have been tested when my grandmother died if i didnt think that he had already done it.

I am about to get married and hoping to have more children, i have children from a previous marriage that could be at risk. I am planning to start law school in the fall, if i can get this depression under control. I have big plans for the next 20 years. In the past few years i have lost energy become very depressed, forget a lot of things, i can only focus on one things at a time and i get irritable in situations when there are lots of things i need to pay attention too. I have noticed these changes and more and always assume they were caused by the depression. Now Im not so sure.

I feel like everyone is putting their head in the sand. I am so freaked out about this test. I have all these plans for the future and Im about to start a whole new chapter in my life, but my future might not even be mine at all.

When I met my father-in-law I noticed the movements but nobody said anything. The first time my parents met my husband's parents my folks said to me afterwards "what is wrong with his dad?" I said I don't know and no one says anything about it... One of my in-laws friends suggested that he get some medical attention. When he was diagnosed with HD my mother-in-law was furious at her friends for having them seek medical attention! Unfortunately I bought into their denial and didn't face reality. Now I have to (unbelieveably wonderful) kids who are at-risk. I am writing this because it obviously wasn't just my husbands family that wanted to look the other way and not face the reality. But if you are on these boards you are already breaking that pattern. We are now facing it head-on and being as proactive as possible and optimistic regarding the future. We can ensure that future children aren't at risk. Good luck Maree and Dreams... as Marsha said, if you do have HD there really is a lot to be hopeful for right now.

I am going to the hospital today to find out what is wrong with me, I have a daughter that needs me and I can't be there for her in this state. Love my family but I can't keep living like this. Please pray for me..... For the strength to get through the day and the days that lie ahead.

I think your my new best friend...... ! Thank you for posting! We have so much in common!

Oh i'm glad you're going to the hospital, hang in there, and will be thinking of you (((big hugs)))



Edited 1 time(s). Last edit at 04/11/2011 03:36PM by Barb.

Thank you Shar. You gave me strength today. I hope it helped Maree.

Thank you Shauna. I hope it does help Maree as well
Have a great day!

Sharon

MAREE,

there is alot to be freaked out about... but even if you have hd...
THERE IS LIFE AFTER HD....
this forum talks about alot of 'quality of life' things you can do
for yourself now... food, exercise, supplements, ect ect ect...
you know your family may be freaking out more than you are,
and if they are, they can be projecting onto you...
if you have been having temper issues around your child,
if you have been doing weird obsessive behaviors, than
perhaps they have some reason to think psychiatric ware,
but if this is not so, than get a grip girl and hold your own...

if you have hd,there is time enough to cry about it for many long
years.... but you wont, cry, forever... once it sinks
in, you will learn to live with it, and you will find you can
enjoy life still for along time... there is joy in everyday
you have if you play your cards right...

WOMAN ARE STRONG... FIND THAT INNER STRENGTH,
YOU CAN DEAL WITH ANYTHING...

and i absolutely agree with marsha, there are alot of
things being tested that are farther along than years ago,
SO IF YOU GO TO A MEETING, AND THE DUDE SAYS,
HE'S BEEN HEARING THAT FOR YEARS, TELL HIM,
MAYBE NOW THAT WE HAVE BETTER TECHNOLOGY,
NOW THAT WE HAVE UNLOCKED MORE MYSTERIES
ABOUT DNA, AND NOW THAT WE HAVE SPENT
YEARS OF RESEARCH, WE MAY JUST GET SOMEWHERE...

also i am so with marsha, i mean, you may just be under
panick mode, and if not, you have to know, people live with
hd everyday, and if its you, you will do it well...