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StephenNTx

3 1/2 months in... And more questions

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ay some back story:

 

I am 45 and work as a facilities maintenance director. My job is full body contact, physical and I walk 5-10 miles daily, usually carrying tools or parts. I am on call 24/7.

 

5 years ago I was diagnosed with blephartis (dry eyes). Could not afford Restasis, so my ophthalmologist recommended eye duct massage and careful eyelid cleaning. Moderate relief at best. Never occurred I wasn't blinking enough. Sleeping 4-5 hours a night. I have never slept more than six.

 

3 years ago I was excessively tired and becoming more heat intolerant. Chalked it up to age. Sleeping 3-4 hours a night.

 

Two years ago I fainted after standing at work and hit my head hard enough to get earn a hospital stay and imaging tests. Noticed balance problems walking but especially on ladders. More fatigue, more heat intolerance. Pain in ankles, knees, and hips. Sleeping 2-3 hours a night. Began taking naps during lunch break.

 

One year ago I had an episode while driving. I could not remember what I was doing or why, for about 30 minutes . Wound up back in the hospital. 2nd MRI among other things. (Mis)diagnosed with First Adult Seizure, given anti-seizure meds. Quit meds after 2 weeks, because I could not stay awake. Sleeping 1-2 hours a night. Lunch nap almost daily. Frustrated and getting more and more angry.

 

Eight months ago I told my family doctor (FD) that I thought something was very wrong. Tested for everything. One neurologist blew me off (previously diagnosed me with FAS), Rheumatologist said I need to see a MDS. Waited four months to see one in Houston. He reviewed previous test, did a physical assessment, sinemet challenge. Then we knew. Parkinsons.

 

The sinemet has reduced visible symptoms greatly. Reduced muscle tension, balance issues, gait abnormalities, tremor and pain.

 

It has not helped fatigue, insomnia, or heat intolerance

 

I have never felt stressed in my life. Never had depression. After two months (on sinemet), I began to have near daily anxiety attacks, severe emotional distress, and depression. Two weeks ago, I cut back to 1/2 sinemet. That seems to make emotional problems less severe, but physical symptoms are not well controlled.

 

Seeing my FD on Friday. I have got to get this managed or I am going to start dropping balls. I fear I will anyway soon enough. I'll post follow up questions tomorrow. Sorry for the long rant...

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Sorry for all your struggles Stephen. I hope things improve soon.

 

I don't have any ideas on your other issues but as for insomnia I have used catnip (in tea or extract form) for years with great success.

 

And no need to apologize for the rant, sometimes what we need more than ideas or advice is to be heard.

 

Hang in there.

 

-Fiesty

Edited by Feisty Folder
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Thanks for sharing.

It must be very hard to continue working with the tools when you have PD. As a ex plumber/pipfitter, I can't imagine how I would be able to function on the job. My current IT job is tough enough just sitting at a desk.

 

I am still able to sleep 4-5 hrs a night and I have begun taking extended lunch hour so I can get some sleep

If you happen to live in a state that has legalized medical marijuana, you might consider it to help with sleep.

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Hi Stephen.  I'm Steven and also in North Texas (Dallas).  Thanks for sharing your PD story.  I can identify.  My first symptoms of PD started when I was in my early 50's.  I noticed I was tired all the time.  Sleep became a major problem and I started dozing off while driving to work.  Like you, I napped during lunch.  I got sluffed off by my doctor over and over.  It was frustrating.  Never a thought about Parkinson's until I noticed a slight tremor in my left hand.  Finally, at last, got to the bottom of what was going on.  I'm now 67 and retired; yet deal with PD.  The meds help with tremors.  A major PD symptom, for me is balance.  I fall a lot.

 

Best of luck to you.  PD isn't a terminal disease, merely a complication.

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Hi StephenNtx,

 

Hear hear to Feisty Folder's comment, don't worry about "ranting" - remember, no one on this forum is required to read any posting so rant away.

 

I know for a fact it helps to organize one's thoughts in writing and it I find it helps to relieve some stress to share those writings with others who might be able to relate even if there's no question to answer or advice to give.

 

I can relate to the frustration of seeking causes for symptoms without resolution and when the "cause" is finally determined to be PD there's a whole new set of frustrations and concerns.   For many of us, this is "not our first rodeo", it's "just" the "toughest bull we've ever had to ride" - (so far).

 

It appears from your back story info. that you have a "habit" of not sleeping more than 6 hours a night and now this is most likely exacerbated by PD-related sleep complications.  Although I'm a newbie to the revised reality of PLWP, everything I read highlights exercise and sleep as critical therapies that we must "persist to pursue".

 

It's "very hard" to change "adult habits" that have been (unintentionally) developed over the years - like not vigorously exercising at least 30-60 minutes a day, or not sleeping 7-8 hours a night, or not eating a diet that promotes healthy gut bacteria, etc.  Add to this the complications brought on by a neurodegenerative disease that makes these habits even harder to develop AND by the fact that many PLWP are trying to balance managing this "complication" while successfully navigating the world of work and raising families and living a full and fulfilling life and it's no wonder there's stress and sleeplessness involved.

 

I hope you are working with specialists that are trained to the nuances of PD related symptoms.  It sounds like you probably get plenty of exercise "just" doing your job each day and I think if Medical Marijuana is legally available for you it's worth considering.  What does your MDS think?  If your MDS doesn't provide you with satisfactory options, maybe there's a "sleep specialist" that could help?  I know my DH (dear husband) has facial masking and now we think his swallowing "problems" may also be PD-related and we're considering a Speech Language Pathologist (SLP) in addition to an MDS - who we won't see for months due to the "appointment wait time".  In the meantime, we are sifting through all the useful information we can find and following up with the dx'ing neurologist in a month.  Ah the joys of managing one's health!

 

Thank you for sharing; I wish you the best of luck, please keep posting or "ranting" whenever you feel the need or desire.  :P

 

Namaste

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Hi StepheninTx,

 

Sleep difficulties, anxiety, and depression preceded my diagnosis by several years. They worsened after diagnosis for quite awhile as I adjusted to my new status as a PWP.  I was diagnosed in Texas and even went to my first MDS in Houston at Baylor. It wasn't until I moved home to Seattle that I was evaluated by a full team of PD professionals. This included PT, OT, Speech and Language Therapist, and a neuropsychologist. They are all in the same building as my MDS. 

 

I suggest you ask for a referral from your MDS to get baseline function assessments in all four areas. If you are not being seen at a Parkinson's center that offers all these services in one place, perhaps your family doctor could arrange them for you. It takes full team to teach us what we need to know to stay healthy as long as we possibly can.

 

Best wishes.

 

Dianne

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The published symptoms for PD and sinemet side effects seem to be mostly the same.

 

I sweat more than ever. It literally pours off of me. I'm soaking wet from 10am until I get home. I feel like I'm on fire inside.

 

Two months after starting sinemet I started having daily anxiety attacks, emotional distress, and depression. Sometimes at the same time.

 

Two weeks ago, with the blessing of my MDS, I cut the sinemet dose in half until I can get in to my PCP. These symptoms seem to be less severe, but the physical symptoms have come back some.

 

What are your experiences starting treatment and dosage adjustments? Thanks in advance.

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Do you use "cat nip" or "cat mint? tea?

 

 

 

Sorry for all your struggles Stephen. I hope things improve soon.

I don't have any ideas on your other issues but as for insomnia I have used catnip (in tea or extract form) for years with great success.

And no need to apologize for the rant, sometimes what we need more than ideas or advice is to be heard.

Hang in there.

-Fiesty

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Catnip. When I used it as a tea, I would take the dried plant (I purchased it at the bulk food section of Fred Meyer, grown specifically for human consumption) and then brew it like a tea. Now I use a catnip extract from a company called herb-pharm, I get it through Amazon. It has never had me feeling drowsy the next day, even when used just a few hours before I needed to wake up. It is however a diuretic, so the key to successfully using catnip is finding an amount that helps you sleep but doesn't have you going to the bathroom all night. It didn't take me very long to find the sweet spot, but still my advice is start slow. When I first started using it I would lie down feeling like it wasn't doing anything and then next thing I knew it would be morning. I think it less makes you sleepy then it makes you calm which makes it easier to sleep. I hope you get a good nights rest soon.

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I'm fine getting to sleep, the problem is staying there for long enough. My fit bit sleep tracker is so bad,bits actually kind of funny. I know I don't kick or yellow at night, it's just poor quality.

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Sorry to jump in, but thought I would again state that PD is a brain disease.  Lack of dopamine causes some interesting effects on the brain.  Some effects people are comfortable acknowledging (tremors), others are not easily discussed.  Anxiety and depression are a very common side-effect of the loss of dopamine.  It can be alleviated (not got rid of) through some medications or therapy.  Talk to your family doctor about anxiety.  see the MJ Fox site: https://www.michaeljfox.org/understanding-parkinsons/living-with-pd/topic.php?emotions-depression

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FWIW, I had a few anxiety attacks before starting levodopa. Since then just 1 and it was much less severe than the others.

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The published symptoms for PD and sinemet side effects seem to be mostly the same.

I sweat more than ever. It literally pours off of me. I'm soaking wet from 10am until I get home. I feel like I'm on fire inside.

Two months after starting sinemet I started having daily anxiety attacks, emotional distress, and depression. Sometimes at the same time.

Two weeks ago, with the blessing of my MDS, I cut the sinemet dose in half until I can get in to my PCP. These symptoms seem to be less severe, but the physical symptoms have come back some.

What are your experiences starting treatment and dosage adjustments? Thanks in advance.

I have the heat intolerance issue as well. Its gotten alot worse over the last few years. I just stay inside on hot days and keep the AC cranked in the car.

 

I had the opposite experience with Sinemet, though, really calmed to the anxiety issue.

 

Have you tried any antidepressants? Depression is really common with Parkinson's. They also work pretty well for anxiety.

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Stephen,

You could try changing your sinemet manufacturer.

 

On Activas Elizabeth, I am a hot mess. Its almost anaphalactic. Mylan or Teva are totally different. I prefer the Mylan, smoother on and off.

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