Has anyone tried antidepressants for psp?

[easterncedar]

Our GP suggests trying something like Prozac, since, he says, sometimes that helps stroke victims regain motor function and we've tried everything else to no effect - and perhaps my sweetheart could use some antidepressant treatment anyway. I am generally reluctant to throw chemicals at a problem, but am tempted to support this. Does anyone have any experience with this? Thanks.

[dorothy-thompson]

Dear easterncedar

All that I have read about PSP and all that I have learned through this site, anti-

depressants seem to be the only help for sufferers and their carers. I have no experience of them, the falls nurse at our local hospital suggested the anti-psychotic drug Queitapine, half a tablet a day, for my husband to control his aggressive and abusive behaviour, it works most of the time. Family discussions seemed to agree that rather than my husband taking an anti-depressant, I take one instead, the rationale behind this seems to be that he will not or cannot control his behaviour but me taking an anti-depressants could mean that I could cope with his behaviour more easily.

Interesting thought, what do others think?

Regards

Dorothy T

[easterncedar]

Thanks for replying, Dorothy T. I am so sorry you have had to deal with aggression and abusive behavior while trying to care for your husband. That's just awful. I have thought about anti-depressants for myself, but expect I'll try counseling first, pretty soon now. I am getting rather frayed about the edges! I do appreciate this forum. It really helps to know I'm not alone.

[goldcap in reply to easterncedar]

Dorothy, I am sorry but that is a horrendous suggestion that he be allowed to continue his behavior but that you should just learn to curtail your reactions. I understand all of this because I have lived it. Not to say there is anything wrong with taking something for depression and anxiety. Whatever helps you cope. But my husband took so may mood altering medication and most were not very helpful at best and making him more angry and agitated at worst.

Eastern Cedar I have one word for you-LEXAPRO. It works really well. How is your shoulder doing?

Take care GC

[deew]

Dear easterncedar

Our Dr had suggested anti-depressants and my husband tried them for 10 days and it was terrible for him,So confused and it made him more unstable then before.

I like him better without them.

Hope it help's, every is person is different.

Dee in BC

[easterncedar in reply to deew]

Thanks, Dee. Every bit of information helps, although it certainly does seem this disease affects everyone differently. I would hate to do anything that made my guy even more confused or unstable, especially since he is on his own so much of the day.

[Pram]

My hubby was put on prozac.. stopped it after a few days since he was getting dizzy spells -- would tell me that he feels the room is going around him

padma

[snapper]

Hi all

My wife was prescribed first Citalopram for the emotional incontinence side effect of PSP. No Help. then prescribed amitriptyline just more side effects from this no improvement. Are now controlling the emotional incontinence with Dextromethorphan, this seems to be working.

[DougK]

My wife was on Nortriptylene as well as electro Convulsive Therapy which may have prolonged the progression of the disease.

[easterncedar in reply to DougK]

I've never heard of ECT for psp. What symptoms were they trying to control with that, I wonder, and did it help?

[DougK in reply to easterncedar]

We learned about ECT for PSP at the Mayo Clinic in Minnesota. It was for depression & apathy as well as to enhance motivation. It did help to stimulate the brain & therefore diminish apathy & inactivity. It was bi-lateral ECT every other week. It did help but could not stop aspiration pneumonia !!!

[easterncedar]

Thanks, everyone. I appreciate all the information. Still new to this forum, I started reading back and saw how many of you have been living with this for years, and how many of you have suffered caring for spouses or parents who perhaps did not deserve your sacrifice, or who could not understand what was being done for them. I admire you all. I do feel fortunate that so far my sweetheart is still his good, kind and patient self. Really, thank you all for being here.

[jimandsharynp]

My wife must be a special case of PSP No unusual emotional changes (anger, apathy, etc.). If she did it would have to be very bad before I would medicate her. I would think that some meds would make things worse. PSP being a brain disease where normal brain transmitters stop, or partially stop, working a med to the brain might mess things up even more. Perhaps Strelly would give us his opinion, which I always value.

jimbo

[Hidden]

My wife is also never aggressive, she is actually a model patient. She was also put on Citalopram, but we stopped very quickly as it did not bring any benefits. Actually my wife is not depressed, which is remarkable. the only 'medication' I give her is two tablets of melatonin before she goes to bed. Melatonin is also a kind of antidepressant that naturally occurs in your body and works quite different from medications such as Prozac, which are pretty nasty. Melatonin helps you to sleep better and using it as a supplement may have beneficial effects. Aggression is often a symptom of frustration and I can very well understand that. Obviously a real problem for the carer. The only suggestion I have is to get psychiatric help.

[JudyJ]

I've been diagnosed with PSP since 8-12 but my Doc and I agree it started during 2010 or earlier.

What came before the PSP symptoms and subsequent diagnosis was the most profound depression and apathy I'd ever experienced for about 3 years. Totally debilitated by it.

I've struggled with depression/anxiety all of my life. Strong family history as well as lengthy personal stressors.

So I had been on antidepressants for many years; those considered in the 'old class', meaning the Prozacs, Selecsas, Zolofts, etc. Probably spelled those wrong but you get the gist. None of them made a difference or barely a difference. 'Old class' simply means they treat one form of depression.

I started on a new class, Pristique, a few years ago. It treats more than one kind of depression, and many people do have more than one type of depression. Taking it has made a positive difference however I do not believe in a 'magic' pill. I consider it a tool. Lots of tools to treat depression, like nutrition, spiritualism, exercise, etc., but I couldn't seem to punch a hole in my depression as it was on the old class. The Pristique has helped with that. It helps me help myself.

The drawback is it's not been on the market long enough to go generic so it's expensive. My co-pay is $80. But it's worth it because I can't imagine where I'd be without it. Also, it's not the type of med in which you can run out for a few days and be without it. It has almost immediate and severe withdrawl side-effects.

All things considered for my various issues I keep my daily medications to a minimum. I know what works for me and what doesn't-they get discarded. I do believe w/o the Pristique. I'd be in a heck of a spot right now. Anxious, angry, and hard to get along with.

Whether it is a person with PSP or a caregiver, both are very demanding situations to be in. I think there is no shame in taking an anti-depressant if it prompts keeping-it-together better, increased productivity, improved sleep, and at least some peace of mind.

Side note-my Physciatrist who's been treating me for 12 years now and ran the gamut of prescribing various anti-depressants for a year or two at a time w/o any significant improvements, told me I should never go back to the 'old class' of the meds that only treat one form of depression. She said time and experience says otherwise.

Hope this helps and best of luck.

Judy

[easterncedar in reply to JudyJ]

Thanks, Judy. (I thought I replied to you earlier, but it seems to have been lost. Excuse me if this is a repeat somehow.) I especially appreciate your generous and informative answer. Depression is such an awful thing to deal with - to have PSP too is just terribly unfair. We had a hard time getting the PSP diagnosis sorted out from other things - lipitor, Guillain-Barre, migraines - which is a very common problem, I know - I wonder how they arrived at your PSP diagnosis, if you don't mind my asking?

[easterncedar in reply to JudyJ]

This reply is out of order now, wrote it after I asked about your diagnosis below - but I just saw your post giving some of your history. It amazing to read something so upbeat from someone who has gone through so much. You're amazing. Thanks again for taking the time with my question. Sleep well!

[Hidden]

Yes. My wife uses paroxetine. It is not high dose. It was given to her by her GP before she was diagnosed with PSP. It is the only drug that has had any type of effect on her. I believe it helps simulate the neural pathways. It is not a cure and her condition has continue to deteriorate. It did help with some symptoms, but not all. She tried another antidepressant before that which did not suit her and higher doses just sent her to sleep a lot.

[easterncedar in reply to Hidden]

Thanks, John. It's such a complicated subject, I appreciate the information. As you see, there aren't many positive experiences discussed here. What symptoms did the paroxetine help with? His GP was citing some data that suggested a type of antidepressant did act as a neural stimulant, and that, rather than depression per se is what he was going to talk to the neurologist about prescribing something for. I'm glad to have paroxetine and pristique, which Judy, above, mentioned, to do some research on.

[lancjack]

My Husband has been on Fluoxetine (generic for Prozac) 20 mg which is a low dosage for several years. I notice a big difference in him if I am late giving him his pill. He takes it in the morning and afternoon. He is on Temazepam for sleep in the evening. I am not sure I am satisfied with this drug as he really doesn't sleep that well during the night. Does anyone have a better suggestion?.

[easterncedar in reply to lancjack]

Dear lancjack, Thanks for writing. Maybe you could ask this question as a new thread or post, where I think you're more likely to get the attention of someone who could help. This thread is old. My guy has now been on generic zoloft for a couple of months. It doesn't seem to be making any difference. I'd be interested in what others might offer about the sleeplessness. It seems our loved ones either sleep too much or not at all, and never at the "right" times! All the best, Easterncedar

[lancjack in reply to easterncedar]

Easterncedar thank you for your suggestion of a new thread or post. It has been suggested to me to purchase Melatonin for sleep. It is a supplement that can be purchased through my supplement supplier. I am new to this blog but have learned so much already. Thanks to everyone who takes time to answer questions. None of us has a lot of spare time but caring about one another as you all do is so comforting. Thank You again

[Kelly55]

Hi EasternCedar. It really is a minefield of what drug treatments or care pathways to take for PSP. My mother was diagnosed last February/April but we believe she has had the condition for 3 years. Mums mood was very low prior to diagnosis and she was on generic anti depressants. Since diagnosis mum was prescribed amitryptyline which is meant to have the bonus of helping sleep and mood at slightly higher doses as well as stiffness. This seemed to help mums mood for a while but you must be careful with not missing tablets or taking too many as its a strong drug. Mum used to sporadically skip tablets and this caused withdrawal issues. Now she is given her drugs rather than being independently taking them. Mum then dropped her dose to one tablet at night time as it can make you groggy (a real hazard with psp) and causes constipation (another big problem). As her mood was still low her gp prescribed her half a sertraline a day. This seems sufficient and as I have recently returned to the UK from Australia to be my mums primary carer this has helped her mood considerably. Mum takes an average of 14 tablets a day (excluding pain killers and laxatives!) as she unfortunately also has high blood pressure, diabetes and osteoporosis. Mum obviously hates taking tablets so whenever medications can be avoided its always best to. Mum stopped taking cholesterol tablets to reduce her meds and now has a cholesterol reducing yogurt drink instead which she takes her meds with. Swallowing is an issue with psp too as you know so tablets can be a nightmare. As long as mums pain is managed and I try to be positive then I find her mood is generally pretty good. She does get emotional and frustrated at times obviously and hates the condition but she's happier she has me to help her. I try to always get her good she enjoys and treats occasionally despite her diabetes as she deserves those pleasures. Talk to your wife and gp for advice on how to proceed. If your wife is sleeping okay then I think that makes a big difference. Mum recently bought an expensive Hypnos mattress as she hated the ones from OT. This seems to help and she also wears tena underwear to bed to minise the need to get up during the night. We want to avoid any additional meds for such things. If mum sleeps, I sleep, if I sleep I'm more patient, if I'm patient I joke more and this makes mum happier Good luck! Always great reading everyone's stories on here. Sorry this was war & peace haha

[peterjones]

hi matey easterncedar and mr c how are you going you two I hope mr c is doing just fine and yourself of course I have not been on here a great deal lately had a lotof probs with new puter etc but I hope ok now it comes and goes well as you csan seded I'm like the bad penny it always shows up someime I just wanted you to know I have not kicked the bucket yet mates ihave to go out now but while ther puter is warmed upi thought I would say hello there pleasé dont proof rea d this I am in a hurry mate see you anne and Charles peter jones queensland Australia

psp merchant

[Heady in reply to peterjones]

Hey Peter Jones, lovely to hear from you. I was wondering why you were so quiet. These blasted computers, although we can't live without them anymore, were put on this planet to try us!!!! I have had a month without a reliable internet connection, drove me mental. Not being able to assess this site and talk to everyone, was very hard!!!

Glad to hear that you are still upright. We are still plodding along.

Lots of love

Heady

[peterjones]

HI ECAND BIG C THIS WSILL BE A SHOCK TO YOUR SYSTEM 2 MAILS IN ONE DAMATEY WELLI TAKE 10 MG OF CIPRIMIL THEY\ ARE SUPPOSSED TO CALM YOU DOWN WHEN I FIRST STARTED TAKING THEM I FELT REALLY GOOD

IN FACT MY DR THOUGHT HE HAD FOUND THE ANSWER TO PSP CURE BUJT DID NOT LAST UNFORTUNATELY SEDED YER CEDARS HVE TI O GO DOWN THE ROAD BOSSES ORDERS SEDE YER PETER JONES Q.L.D.AUSTRALIA PSP BLOKE

[Birdman34265]

Hi my wife has psp, she is on amitriptyline 10mg tablet, i have been cutting in half to start slowly, take it at dinner time.there has been improved walking, not dragging left foot so much,she is still unbalanced but can walk quicker .When she plays indoor bowls she can bowl twice as fast after taking amitriptyline also her emotions are more stable, swallowing and speech no worse .There has been benefits since she been on it,will increase it to 10mg later, other psp patients have been on it and found it promising. one word of caution it can become toxic in higher doses, be strong in mind and positive, dont be afraid to try different things, read the post, Google what you read to check if its safe,have a good doctor who will back in your decisions,good luck ,Peter

[Flemingc]

Mike's neurologist prescribed Prozac for him about a year ago. Small dose, only 10 mg. Hard to know how much it helped, but didn't seem to hurt. This past week he started taking Trazadone, so quit taking Prozac. And yesterday was the best day he's had in a long time. Coincidence? Maybe, but anxious to see what happens going forward.

[Flemingc]

Just read that you're thinking about seeing a counselor. I've been seeing a psychiatrist (that also treats Mike) since last summer, and those appointments have been my salvation! Not only is he well-informed about PSP, he also "gets" Mike, so he's able to be a huge help. I will confess, too, that's it's nice to have an hour a month that's focused on me and how I'm doing.

[Christine47 in reply to Flemingc]

Has your psychiatrist ever mentioned SAMe? I understand that it also helps with depression among other things.

[Stevewithpsp]

Hello EC, sorry to be so conspicuous by my absence since Easter. Have tried to get six replies through this week but site keeps kicking me out.

About a decade ago, when it was obvious that there was something horribly wrong with my brain, I was shunted from medical care to psychiatric care. Everyone had the answer: stop taking all medications except what they were being paid to promote. The unanimous diagnosis was major depression (recurrent).

I was placed on every antidepressant medication known to the chicken doctors, which is what we referred to psychiatridts when I was a prosecutor.

My particular cross to bear was enamored of Effexor, and I am still ingesting it to this day. Needless to say, neither it, Prozac, Wellbutrin, Elavil, Topamax, or several other antidepressant medications made any difference whatsoever.

On one of what seemed like innumerable psych hospital admissions the head honcho decided I needed ECT to solve my problems. I underwent twenty-four treatments over eight weeks. There was no change in my physical or emotional symptoms, so they parked me back on Effexor.

This has been my experience with antidepressant treatments and IT. I hope these treatments work to some extent for others, but warn all that they should carefully manage their expectations so they will not become too disappointed should their treatments are not what they are promoted to be.

Hope you and your fellow are doing well as can be under the circumstances.

Love and hugs,

Steve.

[Marie_14]

Steve

This string is all over the place! Problems with the site I think as I have had trouble twice in about 3 weeks. Some posts are quite old and yours is just a few hours old.

My husband had PSP/MSA although the month before he died was told it was MSA.

He was on a Sertralin tablet once a day. It didn't seem to harm him but not really sure it did any good either.

I get the feeling that patients and even their carers are bring used as guinea pigs?

Not a nice thought is it?

Marie

[Stevewithpsp in reply to Marie_14]

No. But that is what the all powerful doctors do when they are beyond their competency...Experiment. Their patients are going to die anyway, so who is going to complain? We don't have the clout to really change much.

With best regards,

Steve

[easterncedar in reply to Stevewithpsp]

Our doctors have always been clear that they didn't know if what they were recommending would help or hurt, but that since there is no general treatment and some patients respond well to one thing or another, we might as well try. I guess we were luckier in our doctors than I knew. So sorry about your trials, Steve. You really have been put through the mill. Love, ec

[Marie_14 in reply to Stevewithpsp]

Steve we are all going to die sooner or later? Therefore we all have a vested interest in seeing people get the right treatment for whatever is wrong with them?

I have complained about the treatment at our local hospital whenever I wasn't happy. Since my husband died I haven't had the energy to complain yet again but I will. It's the only thing people can do?

Do not let them put you through ECT again! I have heard of only two people who have had it one being you. For the life of me I can't see how it can do you any good! Read up on all you can or ask someone else to do it. Have you got someone to attend appointments with you? That's important. Make notes or get someone to make them for you. Contact PSPA if you haven't done so already. Stay on this site...it is great!

Marie

[Stevewithpsp in reply to Marie_14]

Thanks Marie. I am holding my own and believe I am getting stronger. I will not question this gift, but there is a long way to go.

[Marie_14 in reply to Stevewithpsp]

Take care of yourself and whatever you are doing must be right? It can be a bumpy road so enjoy the good times.

Marie