Hi - My husband has had a rapid deterioration and has been hospitalized as of 12/21. the docs didn't know much about HD and his normal MRI suggested to them that HD wasn't playing a role. They said he was severely depressed (which is true) and recommended ECT. he has been doing very poorly and the doc called the neurologist back for another look. This time he said he thinks it is HD related and is now unsure whether ECT will help if the depression is HD related. This doesn't sound right to me because I know that psychological symptoms are treated essentially the same way whether or not there is HD .

Does anyone have experience with ECT in a PHD?

Thanks very much!!

This is just my personal opinion but I would not allow ECT to be used. I don't like it for anyone and especially not for people with vulnerable brains.

What medication is he on for depression?

We have been through the ringer. We had a good doc that weaned him off all but fish oil and thyroid (for depression). Then he stopped seeing that doc because he was too expensive and found another doc who put him on abilify/paxil and a sleep aid (name escapes me at the moment). this is what he was taking when he went into the hospital because of depression with suicidal thoughts. they raised the paxil and he became unable to think and speak- they blamed it on depression but then realized that it was not working. then they took down the paxil and brought in effexor. he is doing horribly. can't think, says he has trouble speaking but it is really that he has trouble thinking - he can answer questions but can't come up with anything on his own. He has been in-patient since 12/21 - and has deteriorated tremendously. now they are saying it is the HD - but these docs know nothing about HD. He had a "normal" MRI so they said HD had no role in it - just severe depression. Now everyone is pointing to ECT as a last ditch effort and I have no idea what to do. In 1 months time he went from going to work and functioning to being completely incapacitated.

We are in the process of a divorce - he had moved out on 12/1 and seemed to be functioning OK but as the weeks past he became difficult to communicate with on the phone - not really sure what was going on. Until he told his therapist on the 21st that he had thoughts of suicide and was told to go to the ER. And here we are.

Any thoughts? Advice? Experience? I just don't know what is the right thing to do now.

The following is my non-medical opinion....

The problem is that that they added three drugs at once and we don't know which drug he is reacting badly towards. Can't they wean him off all of them and add new drugs slowly, one by one? Paxil, Abilify, and a sleep aid aren't a bad strategy and would work well for some but with HD everyone is different. Maybe they could start with a different antidepressant, then if one works, start him on a neuroleptic like resperidone or Zyprexa (no Haldol). Most of the time, an SSRI like Paxil is the first drug a person with HD takes and it usually works well. It may be that he needs a different SSRI (such as Lexapro) that works slightly differently or it may be that he is one of the minority of HD patients that just don't do well on an SSRI.

Effexor is another drug I am not fond of because too many people have vivid dreams with Effexor that seem to go right into their memories as real events.

I would get him back on the fish oil because there is some evidence that it helps with intractable depression.

Of course he's affected by the HD, it isn't diagnosed clinically by the MRI. And he may have declined because of the disease since it is often experienced as a series of plateaus punctuated by declines. But it sounds to me like a good part of this is that they haven't come up with the right combination of medications. It's too early for them to be panicking and wanting to use ECT, it can take a while to get medication right with HD.

The doctors can call a doctor at a Center of Excellence for HD and get some advice about medications. All of the doctors at the COEs that I know are good about this. They won't consult with patients and their families over the phone but they will with other doctors.

Thanks so much Marsha! That was very helpful. I think when they upped the paxil the first time he started to do a bit better... not sure why it was upped again right away. I am confused because the docs know that he is sensitive to meds yet kept doubling the dosages rather than stopping to see the progress.

Thanks again for your input it is very valuable to us!

Hope2, I'm very very sorry to hear about this. What a shock to have things happen so fast. This has got to be extremely stressful and frustrating. Marsha, THANK GOD for you and your wonderful ideas. Hopefully something can be figured out. I'm also posting because I'm wondering what ECT is?