[Jennifer Blackstone]

 

I use the NeuPro patch 3 mg per day. In general, it sticks well if I’m on a place that doesn’t Bend much. my thighs and my butt are the best places. It itches and makes a red mark If I put it on my stomach or on the underside of my arm. I don’t use much though cuz it bends too much. I did not have to wean increase the patch because I was already on an agonist at about the same level. So it’s working for me and making my days more smooth. I don’t like the cost. C’est la vie!

Here is my back story if anybody wants to read it.

When diagnosed in 2011, age 53,
I started with a small amount of mirapex ER, <span;>0.375 mg,, an<span;> agonist,  After 9 years, I was taking 3 mg of mirapex ER and about five Sinamet 25-100 per day and not doing great. I learned the true meaning of off time.  I was still playing tennis four times a week, though.

2 years later and after a lot of anguish and anxiety, my doctor and I feel comfortable with balancing a few different meds and I’m feeling pretty good, i.e. I can function most days, for most of the day, without any major wearing off. But there’s no mistaking that Parkinson’s is now running my life.

Here’s where I am at the moment. I take meds seven times a day, at increments of 2.5 hours. I use 14 <span;>Sinamet, 2 at a time, 6x per day and 2 long acting at night. I switched from mirapex to the 3mg NeuPro for an agonist.  I tried the patch because I was so up and down during the day, I hoped it would make my days more even.  It seems to be working.

I also started amantadine this year 2022.
It is an extender drug and I was wearing off before the two and a half hour next dose. I was taking two per day and right away it made me dizzy and off balance. I fell and stumbled a few times , and eventually had 6 stitches fall with a lot of blood in May 2022. So I tried the ER version of amantadine which is called Osmolex ER. This drug is really expensive, but the balance issue is much better.

WARNING, you’ve all heard that PD drugs can act differently on each person.  Well, RYTARY took me down!  My prior doctor thought I would get used to it as she prescribed more and more . I felt horrible and ended up, after 5 weeks, in the ER. After that, I had panic/PD attacks, some lasting hours, about every other day for 1.5 years!  I had four more ER visits during that time due to hyperventilation . My advice: NEVER take a med for more than a few days if it makes you sick!

[Jennifer Blackstone]

My weirdest symptom ?!

 

The top of my head, my scalp, itches almost all the time. This started years before I was diagnosed, probably 5 years before, and I’ve been diagnosed for 11. My dermatologist, internist and beautician don’t see a thing on my scalp.  I don’t have dandruff. I looked into it being a pinched nerve somewhere in my back or neck but it’s always there.

[Jennifer Blackstone]

I do suffer from anxiety and depression but they came about in really different ways. I first started having motor symptoms in 2008, I was diagnosed in 2011.  Thinking back, my sense of smell preceded my physical symptoms by at least five years.   In 2008,I went on an antidepressant (cymbalta)  which I thought was stress-related. The rest of my life was good.  I think the depression was related to on-coming PD.

My real battle came in the form of near-daily PANIC ATTACKS!  In April 2020, I was starting to tail off.  I was taking a dopamine agonist and 4-5 Sinemet per day. My doctor prescribed Rytary and started with 3-4  a day, and then upping it every week. My agonist was tapered off in two weeks during April under the assumption it was interfering with Rytary.  Also, t he Rytary made me felt <span style=”text-decoration: underline;”>horrible</span> but was encouraged to ‘ride it out’, and it would get better.  After 4 wks, I ended up in the ER with my first ever panic attack.  I was hyerventilating, my arms and hands were like claws, My cell phone died about 1 h0ur into my 3.5 hr wait in a large, empty, concrete room that was there to hold many expected covid patiemra

[Jennifer Blackstone]

Bill,Thank you for your comments about PD research.So many articles look promising but are usually years away or never  pan out.

What do you think is the most promising area being tested now?  What do you think about the August 31 article about CDNF?

[Jennifer Blackstone]

My meds need to change to keep up with progression, as we all do.  Sometimes I go a year or more without an increase.  Now I am in a time where meds aren’t working as well and seem to leave me with breakthrough symptoms during the day. . . but not every day!  It is so tough to predict.

There was a gentleman who wrote on this site in Oct, I think, of a very fast rise in the amount of Sinamet he was taking.  I wondered why the other classes of PD meds were not in his regimen.  I think the different types of meds can complement each other (??)  I started 8 years ago with Azilect 1.0 and Mirapex ER at a really low dose — 0.75 mg and now up to 3.0 mg (4.5 mg is the highest).  I did not start any Sinamet for the first 5 years.  Then added 1/2 tablet 3x per day.  I’m now on 1 tablet of 25/100, 4x per day.  Sometimes I have to take a fifth at bedtime.

So, My doctor felt it was good that I have an amount of three different typ

es of meds that act differently and each contribute.

 

 

[Jennifer Blackstone]

Rob — that sounds a bit like my panic attacks that started when I tried Rytary.  Mine are not so severe but last longer.  It starts with a clamping feeling on my diaphragm, especially if I’m sitting.  An attack always starts at the end of a dose or just when I take my next dose of sinemet, i.e. I’m tailing off.

Following the diaphragm clamping, I start breathing heavily and cannot stand up due to dizziness.  If I don’t take an anxiety med by this point (within 15-30 min) it can really ramp up.  I feel my heart beating but the rate is ok.  I hear the ocean in my brain (blood pressure goes up).  , the rigidity/stiffness begins and pins/needles start in hands and feet and move up my limbs.  A bad one can last 2-3 hours and more anxiety med.  Twice in a year, I have had to go to the ER for stronger meds.

We’ve ruled out a regular panic attack.  Can’t figure it out.

[Jennifer Blackstone]

Eliz — I get hot flashes, too, and I am 12 yrs past menopause.  Thankfully, they are short and maybe only once a day.  Naturally, it happens right after I put on a sweater!

My strangest symptom:   the top of my head itches all the time!.   I’ve had my internist, dermatologist and salon person look at the top of my scalp and nothing is detectible.  The itchiness started maybe a year or two before my first symptoms (13 years ago).  The only other guess isa pinched nerve somewhere.

Does anyone have panic attacks that aren’t related to anxiety or worries?  The attacks started when I tried Rytary.  I had never had a panic attack prior.  After a month of using Rytary, I stopped — I could not tolerate it.  It is now a year later and I still get panic attacks every two or three days!!  I had more normal side effects like headaches, was hyperactive, overly-emotional and cried a lot, nauseous, and the constant smell of an electrical fire or tires burning.