Melissa here back from lala land. Some may remember me from a few months back?? I had to take time off for a mental breakdown. I'm 36 HD+, I have a grandmother with HD and a mother showing alot of symptoms, and I have 5 children at risk.
My husband and I are noticing a big change in me, personality totally changed, over reacting emotionally, depression, apathy, memory problems, some cognative signs. This has really become worse over the last year.
My husband says I should not look at any HD information as he does not. He says I am obsessing about HD. How can I not when it is taking over my life? I need someone to understand what I am going through, though I often don't know. I am afraid this disease will tear my family apart. My husbands says I always speak about the negative things the children do so he always takes their side, I think he thinks its all in my head?????? I would like to know the truth but I'm scared it is just me Melissa and that I am a horrible person, I try not to overreact but even when I know I shouldn't be doing it I do....... Any insight would be great. I want to deal with this disease honestly! My husband has never read anything about HD, that bothers me.

Ranting I guess,
Melissa

Here's a couple of links he should see.
[www.hcnr.med.harvard.edu]

[www.davidson.edu]

The pictures may help.

Good to see you back... have you gotten your insurance yet and been to a good neuro? Last I remember you were using a free clinic...is that right? A good nuero might be able to help a lot Melissa. Have you been to a COE? They may be able to tell you you are not symptomatic yet and calm you some in that regard. Kind of unusual for three generations of females to all be symptomatic all at the same time but it is possible. I would really try and get to the best HD doc you can get to.

Hi Melissa - welcome back. Are you on medication? Do you have any close friends that you can talk to if your husband cannot deal right now. Maybe he just cannot deal with what is going on. Have you tried speaking to him about it?

I am married with 3 boys at risk. I was the one in denial for about 3 years after my test results. I am now in depression and am on medication. I can understand your fears. I am afraid every day that the next thing I forget could be the start. Or the next time I have a tremor or what ever it is. I know there is some mild short term memory issues for me. I still live a full life and work every day and push myself to do more things to keep my brain engaged.

Whether your husband understand what you are doing or now doing - you need to do what is best for you.

Stacy-NJ

THanks for the link Fred!
Eric,
I haven't been to a neurologist yet, I can't find one in my area with HD experience(Asheville,NC) Don't know of a COE around. I do go to John Hopkins every year for the predict study.
I'm not sure but I think stress can make onset early? I have been through PTSD from childhood abuses, took a few years to recover, could that make it possible to have symptoms at this age? If it is not HD I am in big trouble cause something has taken me over. I used to be so social and fun to be around, not anymore I just want to stay at home and when I am out like at church, I pretty much stay to myself. That is not me 1 year ago. My husband agrees that something is happening to me and when I tell him the early signs of HD he says thats me. I guess I assumed it to be HD??? If this is just who I am all of the sudden I don't want to be here anymore.
Stacy,
Hello again, My current medications are Prozac 80mg, Trazadone 100mg,and ativan as needed, my husband says I need to go to the Doc for my mood swings and easily angered issue. I don't know why I am afraid to go???? I just want the old me back for my kids for my husband.
Thanks for responding and listening!!!
Melissa

Melissa,

Rant at us all you want. Two thoughts. First, we all know that stress worsens symptoms. It sounds like you've got a pile of it right now. Is there something you can do just for yourself on a regular basis that might relieve some stress? Gardening, music, reading?

Second, does your husband have a friend that he might listen to if he won't talk to you? Speaking from personal experience, sometimes we men need a figurative slap up side the head.

Will

The side effects of Trazodone sound like HD.

Common

Behavioral

Drowsiness, fatigue, lethargy, psychomotor retardation, lightheadedness, dizziness, difficulty in concentration, confusion, uncontrollable laughter, sex drive increase

Neurologic

Tremor, headache, ataxia, akathisia, muscle stiffness, slurred speech, slowed speech, vertigo, tinnitus, tingling of extremities, paresthesia, weakness, complex partial seizures, and, rarely impaired speech, muscle twitching, numbness, dystonia, euphoria, and involuntary movements.



Edited 1 time(s). Last edit at 05/30/2007 01:24PM by Eric.

Trazadone may be the culprite???? But I can't sleep without it. Does it change your whole personality?? No my husband doesn't have anyone he can talk to I am going to suggest he become part of the chat here.
Ya'll are great! And to relax I like to do nothing, but I do what is required of a mother of 5 and wife.
Melissa

Melissa, soooooooo good to see you again! Was worried about you hon. Why don't you try seroquel instead? It is really good for sleep, and as a mild mood stabilizer too. Glad to see you back! (((hugs)))

Barb I saw that you were wondering about me on a December thread, thanks the last year has brought 4 visits to the funny farm. Not to fun but necessary. I think I just need us all to find a way of coping with this. But its not HD then something is VERY wrong with me! My sister commited suicide before we knew about the HD as I look back she had alot of the signs and movements but she was only 31.
I don't know what I am asking of everyone?? I think I would rather believe this is HD rather than believe Melissa is turning into a selfish, angry, irritable, hateful person! I think that is one reality I couldn't take. OK so do you all think I am TOTALLY nuts yet??

Thank you all for your responses and information!!!
Melissa

Is there anyone one out there that is in the early stages that I could talk to?
Melissa

Melissa,

I think what people here are softly saying (Will saying more forcefully) is that your hubby needs to become involved. He can be a vital part of your support, help you find doctors, etc. He is affected as much as everyone, and he can help become part of the solution. I do not see how you can address these issues really effectively unless he is involved/supportive. Long before I ever heard of HD, I was attending doctor visits with my wife to describe what I was seeing, helping her ask questions, and generally showing support.

By the way, the COE at Hopkins is primarily research focused and generally will not address your issues. The COE at charlottesville, VA, (Univ of VA) is fantastic and has a HD clinic with neurologist, genetic counselor, psychiatrist, physical therapist, speech therapist, social worker--the works. If you wish, I can give the phone number of the Univ of VA genetic counselor. She is great and will spend lots of time with you on the phone, discussing all of your concerns. Charlottesville should be as close to you as Baltimore, MD.

Melissa - do you know what your CAG is?

I agree that your husband needs to be more involved. Or at least if you have any closed friends or pastor or priest that you can rely on that might be a start.

I highly doubt that you are just losing it. Even if you are in early stages, your stress levels will make whatever is happening worse. I know that when I am really stressed or not feeling well I just feel like I am a bit more off balance.

There are several people who are in their early stages and I am sure will chime in when they have a chance.

Hang in there - you are not alone.

Stacy-NJ

I realize that my hubby needs to be involved!! It is getting him to a place where he can... My CAG is 40, I know, low to be experiencing sym. but it is what my husband and I see when we look at "Physicians guide to HD" I had really taken a break from looking at anything HD realted for a few months, we moved and as I was unpacking I came across the book and began to look to see where my grandmother is in all this but instead it was like reading my life I waited a few days being scared and then told my husband about what I read, he said, thats it, it is HD sym. I know most people are in denail like my mother but for some reason I want and am able to take an honest look at where I am.
Barb,
Seroquel makes me gain weight, I think like this, I may have to lose alot of things from HD but my husband deserves a decent looking wife. Zyprexa does the same thing. I am TERRIBLY scared to mess with my meds because without them I am so depressed I am way suicidal. I've been on Prozac for 3 years or better and they added Trazadone plus shock treatments after about 4 months I was ok again. I am not experiencing depression now And I couldn't imagine going back in that dark hole.
Dave,
I would love to have the phone numbers!! Thanks

Hi Melissa,
It is so good to hear from you again,sounds like you have been having a very hard time of it.I am sorry that I am not able to give you any great words of advice,all I can say is that I am thinking of you and I hope that things get better.
Take good care my friend,
Gordon

Melissa-
What a wonderful support group I have found here and you have as well.
Everyone cares about you so much.
You have got so much on your plate. Just having 5 children, although a blessing from God, could make a person go off to lala land without a break. I had two beautiful wonderful children but even then a person needs a break.
Maybe your husband is afraid and feels if he doesn't delve into it, it will go away or he will not have to face it. I speak from experience.
If he will look at this site I think it could help, otherwise, maybe try finding a few minutes of quiet time to tell him how much you love him and how afraid you are and that you know he must feel the same way but that together you can get through it. Communicating goes a long way.
You have had some excellent advice in these replies and never give up hope. They are working on so many medications to help people with HD and I feel one will come down the pipe soon, if nothing else, to help.
Also, your children need you so much. Never forget that.
Take care and God Bless you Melissa
Sharon

Melissa,
Welcome back!!
Sandy

Melissa,

Welcome Back. I'm sorry to hear about your difficulties. I was experiencing some of the same difficulties and went to my HD clinic for a checkup. My neurological exam had only one atypical finding (slow saccadic eye movements, which I've had for 17 years) and my neuropsychological assessment was normal. I added Yoga and relaxation to my daily schedule and I am feeling mych better. For me, the optomistic results of my neurological and neuropsychological assements assured me that I was not having HD symptoms.You may also want to find a good psychotherapist.

Gordon,
So good to hear from you again!!
Shar,
I do get breaks from the kids they are older now (18,17,15,11,8) ,4 boys one girl,and not hard except when I think they are doing something they shouldn't and then its up to my hubby to figure out if it is me or they have really done something wrong. Kids I think have the idea that their parents are overreacting more than they really are but when my hubby agrees with them it is hard for me to hold any authority or respect in the house. I do have those quiet crying talks with my hubby, so far it has produced nothing but him being more convinced that I should never think about HD. He tends to be a person who tries to run from conflict, in our marriage I have usually taken care of the finances, the kids........ He was content to have a job and love his family. But for 1 year he has had to do the finances and more kid stuff, applying for food stamps, calls that need to be made on our behalf, he gets stressed by having to take all this on, but he is doing better as he sees I can't do it anymore.
Sandy,
Thanks for the welcome back!
Paula,
I am not really looking for someone to say that these sym are not HD, whatever it is, it sure looks like HD and I thought this was the right place to come.
Everyone,
Thanks for the incredible support and advice!!!! You know what it feels like to have people who can relate to what you are going through!
Melissa

Melissa you did come to the right place for HD issues. The problem is we can't diagnose what's happening. That's why getting to a COE or good nuero who can treat you properly is really what your next move should be. Electroshock and Trazodone aren't standard HD treatments. You really need a proper diagnosis from the proper doctor, and if you are symptomatic, receive proper treatment which can make life much more manageable. Here is the NC chapter of HDSA and they should be able to lead you to a doctor there.

North Carolina Chapter
P.O. Box 240353
Charlotte N.C. 28224-0353
phone: 704 - 525-1835



Edited 1 time(s). Last edit at 05/30/2007 09:45PM by Eric.