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Didi

Extreme Anxiety

31 posts in this topic

Do any of you suffer from extreme anxiety with your PD? My husband is 52 and Dx for 2 years. We held off on meds until this month, and began levodopa a few weeks ago, we never got past 1/2 tablet of 25/100 carbidopa/levodopa when he suffered from extreme anxiety. insomnia, claustrophobia and restlessness. We thought it was the meds and called MDS office they had us stop them until we could get back from our vacation (we were visiting our sons in Florida -- we are from the northeast). Now we are back and he is still having difficulty -- he hasn't had any levodopa for 13 days so I believe it was a coincidence and this severe anxiety has nothing to do with the levodopa. We are going to PCP tomorrow to rule out any other physiological issue that may be causing this. On hindsight -- I see that this anxiety has been building for a while but he was able to cope with it. Why did it take this sudden turn to the extreme? -- I don't understand. He has trouble sleeping, lost his appetite- - is so claustrophobic he doesn't want to even get in a car let alone drive. He has episodes where even his clothes make him claustrophobic -- he wants them all off. This extreme behavior all of a sudden is shocking. Thankfully he works for his brother who is understanding while we sort this out - - but I sure  hope we can sort it out soon. This seems too early in the road for this to happen.

 

Anyone experience anything similar?

 

After our visit to the PCP we will be heading back to the MDS. Those of you who deal with anxiety and depression, does your MDS handle that or do you see a psychiatrist?

Thank you for any words of wisdom.

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From what I understand, anxiety's source is often different than what the symptoms might make one think the anxiety is from.

A good therapist (psychologist or psychiatrist or MSW) may be able to help him through talk therapy and medications (which may be just temporary).

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From what I understand, anxiety's source is often different than what the symptoms might make one think the anxiety is from.

A good therapist (psychologist or psychiatrist or MSW) may be able to help him through talk therapy and medications (which may be just temporary).

 

And yes, I've worked through extreme, extreme anxiety from when I was very young until I found help from an MSW and meds through my workplace when I was in my thirties.  The meds were taken just to help me as I worked on the issue (social anxiety).   I'm also on a wonderfully helpful combination of antidepressants--Cymbalta and Wellbutrin.  I highly recommend them.  My journey was long--very long--because it started way before therapy was offered.  And it wasn't understood that my body just did not have the biochemical balance it needed. My life is completely different now, and I approach it with so much freedom and happiness and enjoy it so much more. It was very hard to go through anxiety and depression back when society felt it was not to be talked about, and so little was known about it, and those of us who suffered from it were ashamed and embarrassed. 

Edited by Linda Garren

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My husband has possible Parkinsonism and memory deficits. He was admitted to the hospital recently for severe stomach pain from Gastoparesis and overnight he developed extreme anxiety and panic attacks. He was so claustrophobic he begged me to get him out of the hospital at once. While hospitalized he started tremors and his short term memory was just gone. Talk about bewildered! They gave him drugs for the attacks and they did go away and haven't returned.Hoping you can find something to help him.

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I was diagnosed about a year ago ,had symptom's longer . Recently I had to see a psychiatrist at the VA as part of my claim . he asked questions from my child hood to the present ,about a half hour . I told him I had severe anxiety at times mild depression at times . Anyway without giving you the questions and answers to about 250  questions ,he diagnosed me as having an Adjustment disorder with a depressed mood . I asked what that meant and he explained  That I am not adjusting to the diagnoses of Parkinson's and that it is what makes me feel anxious and depressed . My response was that PD has changed what I do and effects everything from my work to my home life .Almost nothing has been untouched . He said it takes time to adjust to something that life changing . But every time I think I  have a grip on my world something else changes .so I am not sure how or when it will subside . hope that helps a bit .

                Dan

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Didi, is your husband on ANY other meds? Klonopin for example...?

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Nope, not on any meds at all. At 52 he's been extremely healthy other than PD -- Dx 2 years ago (had symptoms for maybe a year before that).  He didn't even have a doctor before he got Dx -- hadn't been to a doctor in 30 years. Doesn't even take over the counter drugs for anything ever. That's why this is so strange. We tend to be people who avoid drugs so that's why we waited so long to start PD drugs.  We've done exercise and PT (LVST BIG).  But things were progressing so that he was not being able to do his job -- his brother would never lay him off -- but he was not being useful to the company and his quality of life was going downhill and so we felt we had no choice but to start levodopa.

 

But why this dramatic downhill in his emotions and behavior -- I just can't understand. I thought PD was slowly progressive. Why these severe psych issues so early on. I think a lot of it stems from an inability to sleep -- but at 52 the thought of needing sleep meds for the rest of his life is scary too. I'm an RN and know there really are no great long term sleep meds.

 

Well we are off to the PCP this afternoon to see if he has any ideas of what might be causing this.

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It is a very big adjustment for someone who went from no drugs to needing drugs forever.  Just when he was finally willing to accept the fact that he needs to take something that will help him yet instead makes him sick is extremely frustrating.  Anxiety will most definitely come into the picture now.  All kinds of thoughts pop up in his head I'm sure about your future.  When sleep is disturbed it makes it even worse.  I know it doesn't help to read this as a possible reason for his progression but at least you know that it's completely understandable and this is your reality now.  Please do support him and reassure him that you are not going anywhere and that you guys will figure this out and take it one day at a time.  Be strong.  I know it is easy to say but I tell myself that every day. 

 

I am a caregiver to a mom with advanced PD/Dementia.  I take Xanax daily for my anxiety.

Edited by miracleseeker
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My husband has possible Parkinsonism and memory deficits. He was admitted to the hospital recently for severe stomach pain from Gastoparesis and overnight he developed extreme anxiety and panic attacks. He was so claustrophobic he begged me to get him out of the hospital at once. While hospitalized he started tremors and his short term memory was just gone. Talk about bewildered! They gave him drugs for the attacks and they did go away and haven't returned.Hoping you can find something to help him.

 

One big thing I forgot to mention:  Information from research is coming out about how much our gut health affects our brain. 

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I was diagnosed about a year ago ,had symptom's longer . Recently I had to see a psychiatrist at the VA as part of my claim . he asked questions from my child hood to the present ,about a half hour . I told him I had severe anxiety at times mild depression at times . Anyway without giving you the questions and answers to about 250  questions ,he diagnosed me as having an Adjustment disorder with a depressed mood . I asked what that meant and he explained  That I am not adjusting to the diagnoses of Parkinson's and that it is what makes me feel anxious and depressed . My response was that PD has changed what I do and effects everything from my work to my home life .Almost nothing has been untouched . He said it takes time to adjust to something that life changing . But every time I think I  have a grip on my world something else changes .so I am not sure how or when it will subside . hope that helps a bit .

                Dan

 

Dan, have you considered getting a second opinion?  Just to be sure?  Perhaps one who specializes in Parkinson's?

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Interestingly, my husband has never and still does not have any GI symptoms at all. My son has Celiac disease and so we had him go on a trial of a gluten free diet for 1 year and it did not help his symptoms at all. Only now, with this anxiety, is the first time I have ever in his life heard him complain of nausea, abdominal discomfort and lack of appetite during his episodes of claustrophobia and anxiety.

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Dan, have you considered getting a second opinion?  Just to be sure?  Perhaps one who specializes in Parkinson's?

Linda - Why do you think Dan needs a second opinion?  I think what his doc said sounds pretty accurate to what's happening to him.  Is there a shrink that specializes in PD??  If so why?  Would there be one for MS or ALS too?   Acceptance is hard to deal with when it's not positive.  Dan doesn't sound like he disagree with what the doctor said.

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I thought the doctor made sense, too.  And time may tell.  

 

There are MDS's who specialize in the psychiatric aspects of Parkinson's, yes.  My concern is whether this psychiatrist has had any training in PD.  Think about how many neurologists know zip about PD, yet we would assume that they do and might trust in their diagnosis as being correct.  Some have posted here about such experiences--finding out that their neurologist did not know much about PD at all.  So my concern is whether Dan's psychiatrist is PD knowledgeable or not. 

 

My intent was not to disagree with Dan's psychiatrist, but to perhaps see a psychiatrist trained in PD.  It could be that the first psychiatrist's diagnosis is a part of what Dan is going through, but there could be more to it than that since this is concerning PD. There could be biological issues as well. 

 

Sorry I was not clear in what I had written.
 

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Thank you for the clarification.  Insurance plays a big role in finding  the "right" doctor.  In my experience specialized MD's do not take just any kind of insurance.  Hopefully Dan is receiving the right diagnoses from his doctor and in time his worries will lessen in his mind and he can concentrate on the physical aspect of the disease.   Ali probably had the best doctor $ can buy but the disease still progressed anyways.   We all do what we can.

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Hi Didi,

 

What other PD symptoms does your husband suffer from? Does he have tremor?  Rigidity?

 

Regards,

Richard

 

 

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Bradykinesia, Rigidity, Shuffling gait, no arm swing, flexed knees and flexed arms, masked face, some voice changes -- softer voice- sometimes breathy, hoarse voice. He does have some atypical symptoms in that his tremor is not a resting tremor --  but an action tremor -- involving large muscle groups. His symptoms were also very bilateral from the onset. Very poor hand coordination, which is a big problem as  he works with his hands - -a plumber.

 

He complains of a tightness in his abdominal muscles -- around his diaphragm when sitting and feels this is causing his anxiety/claustrophobic symptoms. I am wondering if he could have dystonia happening in his trunk?

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Didi,

 

Being that your husband hasn't been to a doctor in thirty years, maybe has more issues than just Parkinson's.  The tightness in his abdominal muscles might indicate a problem with his back if he's compensating.  It seems like once your diagnosed with PD, everyone wants to blame everything on it.  As we get older, the body breaks down.

 

Just some food for thought.

 

Dave

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DiDi - I have heard of dystonia happening in the diaphramm. I can see how this feeling could elevate anxiety and make someone feel as though they want to "shed" any restrictions on their body, almost like the feeling of a tight girdle around them.

 

I also believe Nausea can be caused by Levadopa, maybe the MDS can prescribe something to help with that.

 

Maybe a few separate issues going on, all of which would greatly increase anxiety and depression.

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Dave,

 

I just want to clarify- - I meant my husband had not been to a Dr. for 30 years until his PD symptoms became evident. He has been going faithfully to his PCP every 6 months for the past 3 years  and has has checkups and bloodwork every 6 months. He had a pretty full workup during the diagnostic process 2 1/2 years ago.

We went to PCP today. He really had no answers for us. Did some bloodwork to check things like thyroid, etc..  I asked for a referral for a sleep study and he gave me one but they can't get him in until Sept. 13. I just emailed his MDS office to tell them we went to PCP for a workup, and asked for an appt. with them as soon as possible.

 

His MDS is actually an expert on Depression in PD but our visit with her isn't until Aug. 25. When you get some of these national expert MDS it is hard to get an appointment with them on short notice. But I know they will get us in with one of the NPs so I'm just waiting to hear back. 

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There are some videos on youtube from monk Ajahn Brahm that could really help these issues. Not all PD symptomps can be solved with a pill.

Edited by waruna01

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Bradykinesia, Rigidity, Shuffling gait, no arm swing, flexed knees and flexed arms, masked face, some voice changes -- softer voice- sometimes breathy, hoarse voice. He does have some atypical symptoms in that his tremor is not a resting tremor --  but an action tremor -- involving large muscle groups. His symptoms were also very bilateral from the onset. Very poor hand coordination, which is a big problem as  he works with his hands - -a plumber.

 

He complains of a tightness in his abdominal muscles -- around his diaphragm when sitting and feels this is causing his anxiety/claustrophobic symptoms. I am wondering if he could have dystonia happening in his trunk?

Well, that is a LOT of heavy PD symptoms for a dx of only 2 years or so. It sounds like a pretty fast progression, which I'm sure WOULD promote some anxiety. For example, I have been dx'd for about 2 years with symptoms several years before that (sleep problems, some unexplained stiffness and rigidity), but at this point I pretty much just exhibit a right hand tremor. Most people would never guess I even have PD. So, since anxiety and depression is a typical symptom of PD, AND he is progressing rather quickly, then it's probably not too surprising that he has this anxiety. I'm sure that his dr will be suggesting some anti-depressants, which might be a good thing for him.

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Didi -- Boy oh boy does this sound familiar.  (with exception of bilateralism).  It sounds like non-tremor dominant PD.  If that's the case, most of the destruction in the substansia nigra is not affecting the motor system as much.  Which can mean the damage can be elsewhere.

 

Call the PCP again and get them to prescribe a mild anti-anxiety and or anti depression pill.  My DH is on bupropion (milder than most).  He had symptoms of PD for years, but as no resting tremor, no one could see it.  If I had to guess, I would say a decade before DX.  So, if this is also true of your DH, this may not be 'fast' progression, it's been creeping up for years.  One thing that PD does is makes a person more sensitive to release of stress neurotransmitters.  From what little I understand (Do NOT use this as valid opinion, only as something to investigate) the deficit of normal amounts of dopamine means that the normal amounts of adrenal transmittors outnumber the dopamine.  Hence adrenaline is picked up more than necessary.  So, higher stress reactions.  DH, before Dx, was so filled with anxiety, that our PCP gave him an anti-anxiety agent for really bad times.  He used it before going to work.  It helped a lot.  Then he had a heart attack, and was put on Beta Blockers (which have some anti-anxiety properties).  He stopped taking the anti-anxiety pills without missing them.  We talked it over, and he went on the anti-depressant to see if it also would help.  It certainly did.

 

Anxiety and depression can be physically caused by a lack of dopamine, and PD can cause anxiety and depression.  So talk to your DH, and your PCP, see if a short trial of really mild junk helps while you wait for the MDS.

btw you might cross post to caregivers for more suggestions, as I rarely read these boards other than checking the CG thread.  Good luck.

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Didi,

 

I don't have any depression but I do have a lot of difficulty with sleep. About 5 years ago my wife was with me at one one of my appointments with my pain management doctor. She told him due to my lack of sleep that I was becoming very agitated and basically a pain in the ass. This was long before I ever exhibited Parkinson's symptoms. I have nerve damage in my lower back and as the day progresses my symptoms get worse. It's difficult trying to fall a sleep when your legs look like bugs are crawling under skin. He prescribed me Trazodone to help with my issues. It helps on multiple levels, first it makes me sleepy. Second it acts similar to the nerve drugs that are usually prescribed by calming my nerves down. Third, it's an anti depressant so I'm sure it helps in that department also. Couldn't hurt to see if something like Trazodone could help.

 

Dave

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He complains of a tightness in his abdominal muscles -- around his diaphragm when sitting and feels this is causing his anxiety/claustrophobic symptoms. I am wondering if he could have dystonia happening in his trunk?

If it were me I'd definitely mention the connection to his doctor. For me it took two years to figure out that my panic attacks were actually asthma attacks. Now I take my inhaler when it starts to feel like the world is closing in on me and within a few minutes I start to feel much calmer. As for the sleep, if you want to go with a non-prescription solution, I always recommend catnip, it's worked wonders for me.

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