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Side Effets Taking Over Our Lives


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#1 loveofmylife

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Posted 14 August 2014 - 09:17 AM

I have just discovered this forum a few days ago, and discovered a wealth of information.  Let me introduce myself and our situation.  I am hoping for some insight or suggestions.  I do not have PD.  My husband does.  I saw another Member "Spousewhocares" that came forward, so I am hoping that I am not overstepping the boundries here but rather seeing if your own experiences can help my husband. 

 

He was diagonsed with PD almost two years ago. He Is 53 now. He was placed on Requip (the lowest dose possible) and Azilect.  Over the course of the two years, he has increased the Requip to max dose of 24 mg per day.  He was doing very well, and we saw really good results.  The only major side effect was his obssesion with playing his guitar 8 plus hours a day.  I figured if that is the obssesion to have, than all is good.

 

1st week of July, I go out of town for 9 days.  He is home alone. The Last 3 days out of town, I am unable to reach him.   I come home, and find that he has not eaten in 4 days, and stopped taking his meds for a week.  I took him to the doctor immediatly.  He suggested starting him back on 12 mg a day for several days, and then back to his regular dose.  So that is what we did.  That is when the paranoia began. It started slowly, but then got so bad with in a week that there was no reasoning with him.  He was so sure that all people were robots, and we had all been computer chipped, and were being controlled by others.  He was hiding kitchen knives under the bed as he thought someone was after him.  He began talking about how he had died three times and come back to life.  He would ask me if we were alive or dead.  He removed pictures from the walls, and destroyed the pictures.  And so much more. This is just a few examples.

 

I called the doctor from work, and he suggested a psychiatrist, or take him to the ER to be evaluated. I thought to myself, we have to find a new doctor right away.  When I got home that day, my husband was gone.  They only thing he took with him was his wallet.  I filed a missing persons report, began searching for him, and he was found five days later by the police at the bus station.  He said he had called me over and over again to come and get him.  He truly never had called me.  He then told me he was reaching out to me telepathically to come and bring him home.

 

I got him home.  The doctor suggested to drop his requip dose to 6 to 12 mg a day with no Azilect to see how he does.  Some of the paranoia has gone, But other things are now occuring that never did before. He will hear a song, see something on TV, hear a conversation, and then he will come up with these wild stories of things he belives have happened to him in the past.  Bad things...  But none of the things he thinks have happened every truly did.   Example,  thinks he drove a car and hit a person, and left them to die. He now has become obsessive/compulsive about sex. The actions associated with this have been very disturbing, and rather hard to deal with as this actions are not him. There seems to be no voice of reason in his head anymore. He even went as far as asking a neighbor to come join he and myself in a sexual manner, as he said he knew that is what I wanted, and that we had dicussed it.  There was never any such conversation, and definetly something I would not participate in. We will be watching TV, and he will just stand up with no thought what so ever, and undress himself.  I tell him this is not appropriate behavior, and he will get dressed, only to do the same thing 15 minutes later.

 

I could go on and on about all of things that have occured in the last month. It has been a month of hell for both of us.  But more so for him.  He knows something is wrong, but he can't figure out what it is.  He doubts me a lot.  And what I mean by that is he is always asking am I going to leave, or do you love me, or are you real or a robot taking my wifes' place......No matter how many times I try to reassure him that I love him, that I am not going anywhere, that we will get through this together, it doesn't seem to get through to him. 

 

I have since taken him to a new doctor. He is a movement disorder specialist, and we both liked him right away. So last week, he was put on Amantadine 100mg once a day, and Requip 12 mg once a day. We are to do this for two weeks.  If he does well, then increase the Amantadine to twice a day.  If he is not doing better, we are to drop the Requip dose to 8 mg once a day, and the Amantadine to twice a day. 

 

But so far, I have not seen much change, except the Amantadine has now added new side effects such as increased anxiety, restlessness, anger, and lose of appetite.

 

He is home alone everyday as I have to work full time to support us.  I worry all day long.  I call and check on him at least 3 times a day.  I feel he shouldn't be left alone at this time, but don't have the resources to get someone to stay with him during the day. I have discovered that he has been taking additional doses of Requip when I have been at work. He thought he sould take it because his freezing episodes, and walking have been dramatically worsened by the lowering of the doseage of Requip, He had also been trying my perscriptions because he thought they would help him as well. He took allergy medicine because his throat hurt.  He said he tried my nose spray because his nose was stuffy, but in fact he had used my eye drops for his nose.   I have since removed all medications from the house.  I take them with me each morning.  I place his dose on the counter every morning so that he can't take anything other than what he is supposed to.  I keep telling him we are trying to regulate his meds, so that we can find what will help him, and what won't.

 

I know I have been going on and on.... These things are so personal and we are noramally very private people.  I just feel so helpless.  I am hoping by putting this out there, that some of you may be able to give us some suggestions as to what may work medicine wise or a combo of medicine for any type of simular situations. 

 

He is the love of my life, my soul mate and best friend.  I have to keep reminding myself everyday, that this is not him.  That it is out of his control when he says hurtful things, or suggests things that would never have occured prior to all of this.  I need to find him some peace.  He is so lost and suffering right now.  We both are.


Edited by loveofmylife, 15 August 2014 - 08:09 AM.


#2 christie

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Posted 14 August 2014 - 09:31 AM

God, some docs are truly unbelievable !!! "Loveofmylife" your hubby needs to get off this damn drug (Requip) and start taking levodopa!!!

 

Caution: he should NOT stop Requip cold-turkey, but slowly and gradually while up-titrating levodopa, and under a doctor's supervision.

 

Find a neurologist with some common sense and understanding. Sinemet is the best drug choice there is, especially when a patient suffers such devastating side effects from any dopamine agonist drug.


Edited by christie, 14 August 2014 - 09:32 AM.

-English is not my first language !

-Aged 39. Diagnosed at 35. On levodopa monotherapy (500mg daily).


#3 loveofmylife

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Posted 14 August 2014 - 09:40 AM

I truly am thankful for your suggestions.  I am hoping this new Movement specialist will be able to help. But if you don't personally know someone that can point you to a great doctor, you are left to trial and error. 

 

I will definitely ask him about the Levodpoa.  I have been trying to study up on all of the drugs out there, but of course this is all new to me.  I knew there could be side effects, but I was not prepared for all of this.



#4 TeresaJ

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Posted 14 August 2014 - 09:48 AM

Loveofmylife,
You already got the best advice in the world from christie. Please don't feel because you don't have PD you don't belong here. You are in this just as deep as the rest of us are. Bless you for all you are doing for your husband. I promise you that when you get him off that requip your husband will be able to see clearly enough to see you for you again. You are so amazing, andI wish I could give you a big hug!
You are going to meet a lot of great people here. Please ask anything, and post anything you are feeling.
Seriously, you warm my heart!
Age 47
Dx 9-14
Rigidity in shoulders and back. Left foot/toe cramps, but right at times too.
Primary left tremor in thumb index finger (wrist intermittent)
Spasmodic Disphonia with tremor
Jaw and tongue tremor
REM Behavior Disorder
Mirapex ER 0.375 nightly
Zonisamide 300mg nightly
Clonazepam 1mg nightly
Sinemet 25-100 (3× daily)

#5 PatriotM

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Posted 14 August 2014 - 09:50 AM

Straightforward and to the point Christie!  I agree 100% with Christie, you need to get him off the drugs that are causing these side effects ASAP, before something truly bad happens.  Doctors and drug reactions kill 783,000 people each year.  Doctors are more dangerous than drunk drivers, Parkinson's Disease, and terrorists combined.  Many doctors are complete morons.  You need to find a competent doctor now.  Any doctor that is continuing drugs that are causing these severe side effects should be fired immediately in my opinion.


Edited by PatriotM, 18 August 2014 - 05:33 AM.


#6 loveofmylife

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Posted 14 August 2014 - 10:07 AM

Bless you all for making me feel welcome, and for your suggestions a words of wisdom.  I knew there would be answers and help.  I just didn't know where to look.  I am so thankful that I have found all of you!



#7 RNwithPD

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Posted 14 August 2014 - 10:08 AM

I agree....get him off Requip (dopamine agonists) ASAP! 


Currently age 42.  Symptomatic at age 36.  Diagnosed at age 39.  Sinemet 2-tabs every 4 hrs (800-1000mg levodopa daily); Amantadine 100 mg 3 times/day; Primidone 50 mg 3 times/day; gabapentin 200 mg 3 times/day; Klonopin 1 mg at bedtime; Seroquel 50 mg at bedtime; Effexor 75 mg daily; Vit-D3 5000 IU daily;Vit-B Complex daily; Melatonin 3 mg at bedtime


#8 coacht

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Posted 14 August 2014 - 11:20 AM

Love of My Life,
I agree, get him off the Requip. Also have him checked for a urinary infection as infections are common causes of a lot of
breakdowns from what other caregivers have said. Also, at his age it might not be apparent on a urinalysis and only diagnosed by
culture of the urine. My DW was a different person the day she came off the agonists.

Coach T

#9 Beau's Mom

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Posted 14 August 2014 - 11:21 AM

loveofmylife,

 

As a mental health professional, I feel the need to point out that your description leads me to believe your husband has had a psychotic break due to the Requip, and continues to show psychotic features. It would be very good for him to see a psychiatrist because there are medications safe to use with PD that can help him control his behavior until he is weaned off the Requip and started safely on levodopa. Had you taken him to the Emergency Room, they would probably have admitted him to the psych unit and started him on Seroquel to level him out. It usually works quite quickly. He clearly was a danger to himself, and probably still is. If he decides to undress outside, he could be arrested!

 

I also speak from personal experience. I had a psychotic break due to a medication transcription error that led to a five week long double overdose of Extended Release carbidopa/levodopa. I was hospitalized twice during that time. It took several months to readjust my meds, which didn't truly happen until I had a suicide attempt.  It was no fun for me, and scared my family. I urge you to seek help right away for the apparent psychosis.

 

Dianne


Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#10 elle

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Posted 14 August 2014 - 11:40 AM

We lost our BELOVED neuro two weeks ago...he passed away.  I have been on pins and needles about seeing the new one which his ofc recommended yesterday. 

 

I was correct to be anxious!  the first thing he suggested was Mirapex or Requip.  Thanks to this forum I was able to say categorically NO!  of course not like that but I wouldn't even consider it.  My dh already has some OC tendencies.  So he raised his Stalevo.  He also refuses to prescribe the perfect combination of drugs that makes my dh sleep and gives me the sleep and and time I have to have to deal with him.  What is it about neuros...they just play with people lives!!

 

Please get help asap.  And read these pages...you will learn something every day!

 

Best to you!

 

Edit to say I would also be careful with the Amantadine.  When my dh was on 300 mg he was getting up every night cooking for imaginary people or dressing and packing for imaginary trips.  He did this about three times a night so I could not go to sleep until he wore himself out.  Finally at 100 mg I can see it helps with his stiffness but he no longer hallucinates.


Edited by elle, 14 August 2014 - 02:02 PM.


#11 New normal

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Posted 14 August 2014 - 11:43 AM

Welcome to the forum, loveofmylife...

You are doing the right thing by coming here....the forum people will tell you the truth...there is a huge disparity among doctors ..and their understanding of PD (Parkinson's disease)

PLEASE TRUST THE ADVICE YOU HAVE BEEN GIVEN...Christie is an MD...others have vast experience with this disease for decades...

I TOTALLY agree with the others...titrate him OFF the meds with a doctors supervision....try to get him on l dopa.....do not stop til you find a doctor who will do this....do not be intimidated by ill informed physicians...trust the advice here....quickly search for a qualified physician ...look at the web page and call the help line for PD...they might be able to help you find a doctor who can best help you


Continue to have faith in your own instinct...you are right...hundreds if people here have their own stories of hell....trust them...
Dx'd 6/13 @ 66. Symptoms 10 years prior.
carbidopa/l dopa 50/200 5x daily
Normal DaT scan, normal MRI. Dx'd w/l dopa challenge by MDS
Symptoms: break thru tremors rt side, rt leg drag when fatigued, balance, cognitive/ speech issues, apathy

#12 loveofmylife

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Posted 14 August 2014 - 12:09 PM

I just can't believe that I have found so much help and insight in one place.  I have felt so alone through all of this.  I am going to begin quick action to get treatments into place that will help him!  I have been so desperate. You have shown me that there is hope and things will be better with the right Dr. and right drugs.  Is anyone familiar with Southern CA as far as a wonderful Doctor?



#13 Mihai

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Posted 14 August 2014 - 12:27 PM

Hi loveofmylife,

 

That is the right response...the right combination of meds will make all of the difference in the world!  It may take some time, but ask questions and seek information...this is a very treatable disease, but the best benefit hinges on the right meds.  I will be praying that you find the right combination for your husband.  As all have said, start with L-dopa and go from there! 

 

Peace and blessings,

Mihai (Michael)


Diagnosed in 2001 at 33 years of age

#14 JaneS

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Posted 14 August 2014 - 12:59 PM

Loveofmylife,

 

My husband had some of the same serious reactions to Mirapex that your husband had with Requip.  My husband was put in a psych hospital using the Baker Act because the police thought he was a danger to himself and others.  He had a hammer that he was prepared to use on house invaders that did not exist.  My husband would never hurt anyone.  Please do not let this happen to your husband.  It was extremely damaging to both of us.  The psych hospital came within an hour of prescribing Haldol, until I cried an screamed that he couldn't have it.  Amantadine was also prescribed for my husband, instead of eliminating the Mirapex.  After visiting 3 docs, I finally found a great MDS who totally eliminated Mirapex and Amantadine and prescribed only carp/levodopa.  His tremors are not as controlled as I would like them to be, but everything else is much better.  Please take everyone's advice immediately.  



#15 alanjaso3

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Posted 14 August 2014 - 01:27 PM

Loveofmylife,

 

I have not seen this question asked yet.  Did your husband before treatment seem to have any type of anxiety, depression, or any other type of problems?  The reason I ask is that is my problem that I had a underlining mental health problem that just makes all of this worst.  I agree with Beau's mom about seeing about a psychatrist and possibly put on Seroquel.  It has worked wonders for me and unfortunately for me with my pre-existing mental problems I am on Seroquel, celexa and a mood enhancer.  Plus seeing a therapist helps. 

 

He might of tried to hide the mental issues from you which I was doing.  It took till my movement specialist started prying and saying how I was acting and movements I was performing looked like they were caused from something else that is making my Parkinson's worse.


38 yrs old On Sinemet 25/100 4 times a day.  Officially diagnosed with Datscan 12/31/13 showing Abnormal Type 2.  I am also type1 Diabetic, Diagnosed with Major Depression since my early 20s, Have a 4mm aneurysm in my left internal Carotid artery. 


#16 loveofmylife

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Posted 14 August 2014 - 03:29 PM

Before treatment he did not show any signs of mental health issues.  If he was hiding it, he was really good at it.  However, there is history of mental health issues with his mother, and younger brother.  So I don't know if that would make him more susceptible than others. 

 

Yesterday I had no information, and today I have so much that it over flows! I am starting my list of questions and requests to present to our Doctor.  Everyone, I can't thank you enough. There may be light at the end of this dark tunnel yet! 

 

Bless you all!



#17 AB-Normal

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Posted 14 August 2014 - 05:38 PM

Loveofmylife:

 

You asked about a Dr in SoCal. I don't know about SoCal, but if you don't mind the drive, I would recommend the Parkinson's Institute in Sunnyvale (near San Jose). I was there for an appointment a couple weeks ago and had an excellent experience. You might also give them a call, explain the problems thus far, and ask if they might be able to recommend a MDS near you that could help.

 

Please let us know how things work out, and remember, We're here to help

 

also, if you need the contact info for the Parkinson's Institute, let me know, and I'll send it to you


Michael

Current age= 54

Symptom Onset- 1991 (31)

 

Current meds

Sinemet 6X/day (700mg L-Dopa) 

Azilect 1mg 1X/day

 

 

To quote Cowboy, (a former regular forum member)..........Parkinson's brings us all together. With our many differences and emotions. We have something in common here. It is progressive, dangerous and has adversely affected our lives. We come together here looking for knowledge and comfort from one another.

-- Thank you Cowboy-- wherever you may be......................

 

<Remember, Reality is still optional>

 

<Love shared, Is Love increased........ Pain shared, is Pain decreased.>


#18 old+slow

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Posted 14 August 2014 - 05:42 PM

This is def the place to get any info you need. Even though PD effects us all differently, most of us all share similar symptoms. Fine tuning our med's is where it gets tricky and this is where having a good doctor is very important. You also have to be very careful about mixing different med's. Again... this is where having a good neuro is a must. Many of us with PD are also being treated for depression and anxiety, as they go hand and hand with PD and this is where you have to be careful mixing med's.

 

Some of the anti depression and anxiety drugs do not mix well with PD med's. Make sure whoever you wind up seeing takes the time to research this. I'm no doctor, but can tell you from my own experience that extreme side effects from mixing the wrong meds can turn you into a different person.

 

I was lucky and found a local neuro who took the time to listen to me and research all the different med's I had been prescribed. After switching up a few and deleting a few, he found the right combo for me. This can take time because it's basically trial and error to find the right med's and the right amounts of each. However once you do...it's well worth the effort .

 

IMHO you need to find a new neuro and start back at square one

 

Vic


So what were we talking about?


#19 loveofmylife

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Posted 14 August 2014 - 06:59 PM

Thanks for the info on the institute.  A great place to start. Parkinson's Institute in Sunnyvale (near San Jose).



#20 Drummergirl

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Posted 14 August 2014 - 07:53 PM

Loveofmylife,
Sorry you have been through so much horror.... I agree with the others and applaude all your doing for your hubby.


I'm so glad I was started on L/dopa right from the get go and not all these other "agonists"..... And seriously thinking of weaning myself from the other two I started well after L/dopa.
I have not had any of these side effects,,,, YET.

All these drugs just pad the pockets of the pharmacutical companies. We continue to make them money and they continue to keep us on the mouse wheel..

Tough day for Parkies....
Karen

Dx in 95' at 35- Normal MRI, Abnormal Da t Scan- Resting tremor- right foot, leg tremors. RX- 25/100 Carb/ l =600 mg,
0.5 Azilect 1 daily Comtan 200mg 2 day, 0.5 mg Clonazepam 1 daily.




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