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Hello,  I just found out about your foot surgery.  I hope you have recovered well.  I am having extreme difficulty sleeping at night, but seem to fall into a paralytic type of sleep between 7am and noon.  Is it the PD, the meds or has my circadian clock gone wild?  I have Parkinson's with Dystonia.

Medication Schedule:  7:00am    5mg Rasagiline Mesylate x2 (previously took 1mg,but pharmacist changed for his convenience)

                                                          100 Carbodopa-Levodopa-Entcarpone

                                       7:30am    4mg Tizanidine

                                       9:30am     75 C_L_E

                                     12:00pm    75 C_L_E

                                      2:00pm     4mg Tizanidine

                                      2:30pm    75 C_L_E

                                     5:00pm     100 C_L_E

                                     7:30pm    75 C_L_E

                                    8:30 pm    .25mg Benztropine MES

                                  10:00pm    75 C_L_E

                                 10:30pm   25mg Zonisamide (Dr. scheduled at 7am, but I thought this contributed to deep sleep state in am.  I changed time to pm.  Does not help me sleep at night)

I also take Alprazolam  .25mg PRN and .5mg at 10:00pm.  I take turmeric, Omega red, calcium and Magnesium, if I can swallow pills.  The Zonisamide is a recent addition.  The first two weeks were an adjustment period with severe equilibrium issues and extreme double vision, along with other visual and auditory disturbances.  These issues have pretty much resolved and  now I just generally feel better.   Apparently, the Zonisamide , alone, does not put me in that deep paralytic sleep.  I have been up for four days with a total of six hours sleep and a mild panic attack about 4am this morning.  A crash should be coming soon.  What is the best time to take the Zonisamide?  May I have a occasional alcoholic beverage?

Any suggestions?  I appreciate your help.  Thank you for this forum.

   Deb                                        

Edited by dmCwolfe
incomplete info

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Deb,

I am going to break this down piece by piece to stream line it for us.

1) All of the over-the-counter products (turmeric, Omega red, calcium and Magnesium) should not be taken with the prescription medication. this is mainly due to them causing a decreased absorption of the prescription and not all of the interactions of the over-the-counter products are known because they are mandated by the FDA and not the DEA. You can take them all together, but I would recommend taking them with food, which would avoid them from interacting with the PD medication because most of that should be taken on an empty stomach.

2) I am concerned about the Pharmacist changing the Rasagiline. What strength and when did you take it before the change AND now what strength and how many times a day do you take it? Is it just 5mg at 7:00am?

3) There are some interactions that I will go over with you now:

     (a) Zonisamide and Benztropine: When these are taken together it can cause, mostly in younger patients, but the patient cannot produce sweat when these are taken together and can cause electrolyte imbalances. I don't think it should be an issue, but to avoid it those 2 medications should be separated as far apart as possible. Also, contact the physician if you notice the patient is not sweating.

     (b) Zonisamide and Xanax: These two when taken together can cause and EXTRA drowsiness effect. Since both of them can cause drowsiness, when taken together that effect can be intensified. I call it the 1+1=3 Effect. They can both cause respiratory depression, so the addition can also cause a 1+1=3 Effect.

     (c) Zonisamide and Tizanidine: These two when taken together can cause and EXTRA drowsiness effect. Since both of them can cause drowsiness, when taken together that effect can be intensified. I call it the 1+1=3 Effect. They can both cause respiratory depression, so the addition can also cause a 1+1=3 Effect.

     (d) Benztropine and Xanax: These two when taken together can cause and EXTRA drowsiness effect. Since both of them can cause drowsiness, when taken together that effect can be intensified. I call it the 1+1=3 Effect. They can both cause respiratory depression, so the addition can also cause a 1+1=3 Effect.

     (e) Benztropine and Rasagiline: These two when taken together can cause and EXTRA drowsiness effect. Since both of them can cause drowsiness, when taken together that effect can be intensified. I call it the 1+1=3 Effect. They can both cause respiratory depression, so the addition can also cause a 1+1=3 Effect.

     (f) Zonisamide and Rasagiline: These two when taken together can cause and EXTRA drowsiness effect. Since both of them can cause drowsiness, when taken together that effect can be intensified. I call it the 1+1=3 Effect. They can both cause respiratory depression, so the addition can also cause a 1+1=3 Effect.

     (g) Rasagiline and Xanax: These two when taken together can cause and EXTRA drowsiness effect. Since both of them can cause drowsiness, when taken together that effect can be intensified. I call it the 1+1=3 Effect. They can both cause respiratory depression, so the addition can also cause a 1+1=3 Effect.

     (h) Xanax and Entacapone: These two when taken together can cause and EXTRA drowsiness effect. Since both of them can cause drowsiness, when taken together that effect can be intensified. I call it the 1+1=3 Effect. They can both cause respiratory depression, so the addition can also cause a 1+1=3 Effect.

     (i) Xanax and Tizanidine: These two when taken together can cause and EXTRA drowsiness effect. Since both of them can cause drowsiness, when taken together that effect can be intensified. I call it the 1+1=3 Effect. They can both cause respiratory depression, so the addition can also cause a 1+1=3 Effect.

     (j) Benztropine and Tizanidine: These two when taken together can cause and EXTRA drowsiness effect. Since both of them can cause drowsiness, when taken together that effect can be intensified. I call it the 1+1=3 Effect. They can both cause respiratory depression, so the addition can also cause a 1+1=3 Effect.

     (i) Levodopa and Tizanidine: These two when taken together can cause and EXTRA drowsiness effect. Since both of them can cause drowsiness, when taken together that effect can be intensified. I call it the 1+1=3 Effect. They can both cause respiratory depression, so the addition can also cause a 1+1=3 Effect.

     (j) Tizanidine and Entacapone: These two when taken together can cause and EXTRA drowsiness effect. Since both of them can cause drowsiness, when taken together that effect can be intensified. I call it the 1+1=3 Effect. They can both cause respiratory depression, so the addition can also cause a 1+1=3 Effect.

     (k) Entacapone and Zonisamide: These two when taken together can cause and EXTRA drowsiness effect. Since both of them can cause drowsiness, when taken together that effect can be intensified. I call it the 1+1=3 Effect. They can both cause respiratory depression, so the addition can also cause a 1+1=3 Effect.

     (l) Benztropine and Entacapone: These two when taken together can cause and EXTRA drowsiness effect. Since both of them can cause drowsiness, when taken together that effect can be intensified. I call it the 1+1=3 Effect. They can both cause respiratory depression, so the addition can also cause a 1+1=3 Effect. To a lesser extent than above

** As you can see all of the medications listed under (3) can cause the same similar issue, which would cause the daytime drowsiness you have been experiences. 

(4) Benztropine and Levodopa: Benztropine can decrease the absorption of Levodopa. Which will decrease the amount of Levodopa there is to be used by your body.

(5) Xanax and Levodopa: Xanax can decrease the effects of Levodopa.

(6) Levodopa and Rasagiline: Rasagaline can increase the side effects of Levodopa and can worsen already present dyskensia.

From your list of medications and the many overlapping side effects that have to do with the CNS, such as drowsiness and respiratory depression, I am very surprised that you are not experiencing more drowsiness.

From the list of medications and side effects I would not add alcohol because it will case all of the drowsiness, breathing, and possible "zoning out" sleeping to become much worse.

In my opinion, I think you may want to speak with your doctor about these overlapping issues and try to correct them, or possibly seek a second opinion. Not a second opinion about the Parkinson's Disease but rather about a whole new medication regime.

As you can see from the side effects alone, there are many overlapping meds causing the same issues. Depending on how much Xanax you use during the day could also make this issue worse. 

Here are some of my concerns:

1- The paralytic sleep you speak you experience is because of the Rasagiline, Tizanidine, C/L/E, Benztropine, and maybe Xanax that you take first thing in the morning. All of these interact with each other to have the 1+1=3 EFFECT, but to a greater effect because you have around 7 different ingredients that have the same side effects.

2- I think that either a C/L/E should be used possibly at the 100 strength less times a day OR possibly make a change to Sinemet and Sinemet CR. This way you do not have the Entacapone there to interact with the other medications.

3- I am wondering why Tizanidine is only being used twice a day, in the early morning and early afternoon. Maybe a change to a lower strength more times a day could give better relief throughout the day and possibly help with the sleep issue.

4- If you are looking for something to help you sleep, a medication like Trazadone or certain antidepressants may help with that issue. I think if some of the other issues I mentianed were looked at then maybe your sleeping issue might be a little more stable.

5- I see why the Zonisamide is being used, but some of those symptoms that the doctor prescribed Zonisamide for could be side effects from the interaction of Levodopa and Rasagiline. One such interaction symptoms is hypotension, which can be caused by alcohol, Parkinson's Disease, low body weight, and being dehydrated (which can be caused by the interaction of Zonisamide and Benztropine). Some symptoms of Hypotension are anxiety, dizziness, lightheadedness,vision changes, and balance changes. So, I may look at aking that away and looking at changing times or dosages of Rasagiline.

I hope this helps and please keep me posted.

 

 

 

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I recently added a post, but am waiting for it to be approved.  I had so much trouble logging in, that I tried changing my user name to So Curious.  Did not help; still have trouble.  Will I be sent a notice of approval or disapproval?

 

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So curious,

I do not see a new post from you. If you would like to post it again I will be more than happy to help you.

For future reference, below your post you will see button that reads "Notify me of replies." By clicking this you will be alerted of my reply.

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Hello!  I know that I wrote an email, but I cannot locate it.  I'm not crazy; it must be in the Twilight Zone. My MDS made a few adjustments in my meds.  My circadian clock was out of order.  It is much better now, but what a difficult battle it was to get back on track.   I still have difficulty with cold sweats - after taking a shower and washing my hair and, also, frequently between 5am and 7am.   I believe the trigger is the difference in temperature between my chest and skull.  Where is the internal thermometer located?  Can you recommend any good articles on the effects of Parkinson's Disease on the autonomous nervous system?

Have you seen the recent commercials about Peyronie's Disease. They are using the tag PD.  I feel like they are invading our territory and will cause confusion.

Thaks so much for your help.

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So curious,

Our body temperature is controlled in the part of the brain called the Hypothalamus. Besides controlling body temperature it also controls hunger, thurst, and hormones.

Sweating, or excessive sweating, is unfortunately a part of PD. There is not much we can do about it, but I have attached one article specifically addressing that issue.

I have also attached several articles about the effects of the autonomic nervous system as it relates to people with PD.

I have seen the commercial talking about Peyronie's Disease. I know it may feel like they are aiming it people with PD, but it also affects people with other issues such as diabetes. For many patients this is difficult to talk about or they may not know it is related to PD. I think it is to raise the awareness of this issue and also sell some new medication or procedure. Yes, that is my inner pharmacist who does not agree with drug companies advertising prescription medication on television.

I hope this helps and please keep me posted.

 

Excessive Sweating In Parkinson’s Patients: by Dr. De Leon – defeatparkinsons
https://defeatparkinsons.com/2015/01/07/excessive-sweating-in-parkinsons-patients-by-dr-de-leon/

effect parkinson's on autonomic nervous system - Google Scholar
https://scholar.google.com/scholar?q=effect+parkinson's+on+autonomic+nervous+system&hl=en&as_sdt=0&as_vis=1&oi=scholart#d=gs_qabs&p=&u=%23p%3DXJEgprAnGq8J

effect parkinson's on autonomic nervous system - Google Scholar
https://scholar.google.com/scholar?q=effect+parkinson's+on+autonomic+nervous+system&hl=en&as_sdt=0&as_vis=1&oi=scholart#d=gs_qabs&p=&u=%23p%3DxXSq0Cr59eYJ

effect parkinson's on autonomic nervous system - Google Scholar
https://scholar.google.com/scholar?q=effect+parkinson's+on+autonomic+nervous+system&hl=en&as_sdt=0&as_vis=1&oi=scholart#d=gs_qabs&p=&u=%23p%3DtHDcGgK4F_EJ

Autonomic Nervous System Dysfunction in Parkinson's Disease. - PubMed - NCBI
https://www.ncbi.nlm.nih.gov/m/pubmed/12628063/

Autonomic nervous system dysfunction in Parkinson's disease: relationships with age, medication, duration, and severity. | Journal of Neurology, Neurosurgery & Psychiatry
https://jnnp.bmj.com/content/56/10/1090

Autonomic Issues in Parkinson's Disease
https://www.movementdisorders.org/MDS/Scientific-Issues-Committee-Blog/Autonomic-.htm

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Thank you for your reply.  I look forward to reading the articles you have provided.  As far as the Peyronie's Disease is concerned, I just don't want them calling it PD.  Those are our letters, they can use something else like PYD. Truly wish this was my biggest worry.  LOL

My last full-time job was a travel position, now I am scarred to take a trip.  My MDS vetos the idea, stating it takes me too long to recover.  One day of activity and the next day I am wiped out.   Do you or anyone else have any ticks for travel by car - 7hrs 1-way, 3 nights in hotel and 3hr plane ride plus airport time, 4 nights at relative's apartment. I seldomly leave this building.  I need a change of pace.  Fifteen years of Parkinson's and I am beginning to get despondent. Thank you and anyone else for suggestions.

You are much appreciated.

  m

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Curious,

I had a feeling you were talking about the "PD" initials too. I was trying to stay politically correct, but agree with you 100%. PD has always been synonymous with Parkinson's Disease.

As far as the traveling is concerned, I build in the recovery day. I to travel quit a bit and it has become more of an issue since the diagnosis. I now know that I need to recover and build in that time. If I am going for business, I make sure I plan out and do not overextend myself. I plan meetings over days, not hours. I schedule events later in the morning and try to end at a reasonable time, around 6:00pm to 7:00pm. I also try to keep the same bedtime routine on the road that I have at home.

I also apply these same rules for leisure travel. If I must drive, I break up the day in half. I leave a little later in the morning, plan a break for lunch, and make a plan how much I CAN drive. Not how much I want to drive. To some this can be more stressful. I rather enjoy it. I take my time and really absorb the adventure. 

Another trick I have is that I use Melatonin when I travel any great distance. Melatonin helps keep your carcadian rythem in check. It helps my internal clock adapt to where I am. I also, as much as possible, try to keep my medication schedule on my original time zone. This way I do not experience many adverse effects of trying to change my medication to a new time zone, only to change it back in a few days.

I leave the hustle and bustle to others. I work on my own schedule andmake plenty of time for breaks. I used to have to my schedule into my travels. Now I work my travels into the schedule. The best part about a trip sometimes is the travel and not the destination.

I hope this helps and please keep me posted.

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