Drugs for Hallucinations

Discussion in 'ARCHIVE FORUM: Support discussions' started by suem, Oct 19, 2005.

  1. suem

    suem Registered User

    Jul 1, 2005
    61
    Worcestershire
    I know there are several threads on this but my husband & I are almost suicidal. He has Parkinson's and Lewy body. The hallucnitions dominate his life. They are not people he knows but there are all over the house, night and day. He won't sit down because they are there. Wake him up through out the night. We have furniture moved and he has taken to locking all doors and windows. He feels one in particual is taunting him. I've tried telling there is no one there. Talking to "them", all the things you are told to do and say. But nothing works. It is like living on a knife edge.
    Because he has Parkinson's any drugs he is given will efect the Parkinson's, we know that is the price we pay. The other option at the moment is suicide.
    All that aside has anyone had drugs that have cured it? He has been given a low dose of Haloperidol which our GP was very relucant to give because of the Parkinsons but it has'nt done much.
    Are we on a lost cause?
    thanks
     
  2. Finnian

    Finnian Registered User

    Sep 26, 2005
    60
    U.K.
    Suem,

    Hang in there. Parkinsons can make an individual very sensitive to the adverse effects of medications which is probably why your GP has only used a small dose. If your husband is tolerating this it might be possible to increase it. If not there are plenty of others out there to try that dampen down the unwanted visitors. Its a case of finding the one that suits your husband.

    With the interaction of Parkinsons you may need to be referred to the dementia team / older peoples psychiatric team / whatever specialist you have locally. Even the best GP can't be an expert in everything. Your GP is your first step - tell him how stressed you are AS SOON AS POSSIBLE. Both you and your husband need some action in this matter.

    Don't lose hope, I know how long and lonely the nights seem when you are in the middle of all this but there are other things to try and plenty of support here when it gets rough.

    Finnian
     
  3. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Dear Suem, you must try to get a referral to the consultant/CPN/or Mental health team.
    I know how bad things are for you, but there are drugs that can help, even with the Parkinson's diagnosis. You may have to SHOUT and Scream, but if that is what it takes please try. Suicide is really not the answer, and you should not have to be left feeling like this. Please try to access some more positive help, and of course, we are always hear to listen..
    Take care, god bless, Connie
     
  4. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Dear Suem
    Please don't talk about suicide,it may not be an answer who knows?
    Chase the GP tell him/her that you are going to walkout and leave home and that you cannot cope.(you won;t of course) but hopefully it will shake the GP into some action.
    Tell him that you need a referal to a consultant and his team and help from Social services.
    Don't despair better days will come go see your GP-now.
    Talk to us whenever you feel the need, day or night,someone will be here
    Thinking of you
    Norman
     
  5. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Dear Suem,

    I was really sorry to hear about your current situation.

    I would just echo what others have already said - you need to get an expert opinion as soon as possible. As Finnian said, even a good GP can't be an expert on everything.

    Doing a little bit of internet sleuthing has yielded some interesting results that I would like to pass on. Please note that I'm not medically qualified so the advice on these sites are just a general indication of the variety of drugs out there. It shows how complicated finding the right drug for the specific patient can be.

    1) Lewy Bodies - US National Institute of Health

    Note the following in the treatment paragraph:

    Similarly, neuroleptic drugs prescribed for psychiatric symptoms may in fact markedly worsen the movement symptoms. In general atypical antipsychotic medications are more successful than older drugs such as haloperidol.

    2) Lewy Bodies - Baylor College of Medicine

    Note in the fourth paragraph:

    The treatment of hallucinations, delusions, agitation and other psychiatric symptoms may be challenging. The traditional anti-psychotic drugs (also called typical neuroleptics), such as thioridazine (Mellaril) or haloperidol (Haldol), can worsen parkinsonian symptoms, and should not be used. The newer, atypical antipsychotic drugs, such as clozapine (Clozaril), olanzapine (Zyprexa), quetiapine (Seroquel), ziprasidone (Geodon), and aripiprazole (Abilify) can suppress hallucinations and treat other psychiatric problems without worsening parkinsonian symptoms. However, clozapine can cause loss of infection-fighting white blood cells in 1-2% of cases, a serious side effect which limits the usefulness of this drug. Also, medications used for dementia and behavioral problems associated Alzheimer’s disease, such as donepezil (Aricept), rivastigmine (Exelon), and memantine (Namenda), may be helpful in DLB.

    3) Postgraduate Medicine Online

    Second paragraph under Management:

    Truly problematic psychotic symptoms may be treated with low doses of atypical antipsychotics (16), such as quetiapine fumarate (Seroquel), 6.25 to 50 mg/day, or olanzapine (Zyprexa), 1.25 to 5 mg/day. The psychotic symptoms usually do not completely abate with treatment, but the patient's emotional and behavioral reactions improve. Again, risperidone generally is not well tolerated (14).

    Deep in the bowels of the Alzheimer's Society web site I found this comment about specialist advice:

    If the patient is experiencing hallucinations, treatment should be undertaken by a specialist. This is partly because of the complexity in the multi-agency intervention that is always needed in this situation and partly because dementia with Lewy bodies has a triad of fluctuating confusion, parkinsonianism and visual hallucinations. It is also important for people with dementia with Lewy bodies to be seen by a specialist because if you start to treat the Parkinsonian symptoms this can aggravate the visual hallucinations. The drugs used to treat hallucinations may also worsen the Parkinson's. In this instance, specialist referral is clearly indicated

    I hope you and your husband get the advice you need. Go back to your GP and let him know how badly this is affecting you and your husband.

    Take care,

    Sandy
     
  6. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Urgent that Suem Reads this

    Suem,

    I want to apologise, the advice given by me and probably by many others relates to hallucinations brought on by dementia's of the alzheimer's type.

    Llewy bodies as I hear is a whole other kettle of fish, so don't feel that it is your fault that you are not able to cope with these hallucinations, like others can. IT IS NOT YOUR FAULT!! I have a friend who has a father with Llewy bodies and his hallucinations are a heck of a lot more real than what my father suffers from. Far more confronting and far more difficult to deal with, not simple little annoyances but far more complex and variegated.

    And with the Parkinson's as well with medication combination problems, no wonder life is hell at the moment! Please forgive me for forgetting about the other types of dementias out there, I am very sorry if I contributed to any of your worries. I hope some of the advice offered here by others can help. There will be a way through this, my thoughts are with you.
     
  7. suem

    suem Registered User

    Jul 1, 2005
    61
    Worcestershire
    Thanks for replies---Sandy your info was great and most helpful. The problem is we are under CPN,social service, neurologist, Psychiatrist and great GP who is trying to do all she can but no one is coming up with a decision/soluction. I think they all think one of the others will deal with it and trouble is I don't which of them is the best --the neurologist or the psyciatrist because this falls in both camps.

    Thanks
    Sue
     
  8. Finnian

    Finnian Registered User

    Sep 26, 2005
    60
    U.K.
    Suem

    Speak to them all - ask that SOMEBODY takes a responsibility for co-ordinating your husbands care. They can easily pick up a phone to each other and avoid leaving you in this limbo. I think we must be very lucky, the specialists we've met do this automatically, maybe because we link in to a big teaching hospital.
    Keep going
    Finnian
     
  9. suem

    suem Registered User

    Jul 1, 2005
    61
    Worcestershire
    Thankyou--we have result

    After helpful info given here, especially Sandy. Husband has been given Seroquel. I know it might not work but at least we have some hope.

    WHY WHY is it that all medical people said to us,you cannot give anything for the hallucinations without effecting the Parkinson's ????????

    I would have been none the wiser without TP

    thanks
     
  10. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Sue,

    Well done! It must be so frustrating to have all the responsibility of caring whilst at the same time having to be an advocate for your husband's medical care.

    I'm glad the information was helpful in getting the medication changed - I hope it gives your husband some relief. At least you can feel better in knowing you've done your best for him.

    Take care,

    Sandy
     

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