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Is excessive sweat a part of PD? I have always sweated a lot but now days I am like a faucet! Is it a symptom thing or a medicine thing? I am having to change shirts three and four times a day my head and trunk just pure sweat even in the a/c.

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I never used to sweat, and I live in Florida! Now I step outside for 30 seconds and I want to change clothes. I think in MY case, it's the sinemet or azilect.

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This summer I have begun to sweat at the drop of a hat. The slightest effort and as Grunt put it, a faucet. I have lived in Kentucky for 10 years and spent time in Vietnam, Alabama, Georgia, and the Mojave. So I have my share of 3 T-shirt days but nothing like this. I would like to know if it's symptom or a side effect 

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This summer I have begun to sweat at the drop of a hat. The slightest effort and as Grunt put it, a faucet. I have lived in Kentucky for 10 years and spent time in Vietnam, Alabama, Georgia, and the Mojave. So I have my share of 3 T-shirt days but nothing like this. I would like to know if it's symptom or a side effect

 

I did some more reading on this and found that it can be caused by both. In the later stages of PD this can be a symptom of the disease. The sweat glands of the hands and feet can stop sweating and is picked up by more sweating in the head and trunk sections of the body, but in the case of meds it can occur during off times. In both cases the sweat just starts like a switch being thrown one minute nothing the next you are dripping wet. I am not sure how you tell from which my case is I guess I will decuss it with the doc next week.

Grunt.

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Lots of things can be affected.   As I've gotten my sinemet dialed in I am doing much better.

 

Sweat, bladder, night time breathing are my three autonomic issues that seem to be helped by sinemet. Everyone is different!  Most people do no need sinemet at night, but it became obvious I did much better taking 10pm dose, and maybe a 2am supplement (yes, I need to try CR sinemet... but want three months of data before any changes in medication)

 

What is also interesting to note is some improvement in sleep breathing.     This is from my CPAP data, shows a typical  night. You can tell when I was up wondering (no data) Just a typical night, but the breathing shouldn't stop... but be more consistent.

 

gR03z7A.png

 

Doing better, the increase and decrease in volume is periodic breathing.  The body will regulate your CO2 by increasing/decreasing the volume of your breath.   This just confirms my internal CO2 regulator is a little off.   What is interesting is interesting if I do wake up and feel cramping (dystonia) I'll take 1/2 to 1 tablet.... and my breathing is back on track.  Dopamine level does affect my sleep & breathing. 

 

eyb6MDn.png

 

I feel great, moving much better, but Levadopa is part of my life at this point.    A lot of things are subjective, but it is interesting to look at my sleep patterns as I have much better data.    Sleep doc took one look at my sleep study data, had me repeat it as the findings didn't match typical patient.  Pretty much looked at it with "you have Parkinson's".  No surprise there!

 

If you do not have  oximeter, they are cheap and highly recommended.  Ideal is the datalogging unit you can sleep with, but if you are dropping O2 at night, it will cause other issues that are easily corrected by CPAP systems.

Edited by TexasTom

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My husband had a recent increase in Sinemet.  He started taking an ER along with his IR in the am.  He immediately started sweating profusely.  It got so bad that we bought him a cooling pad (actually made for pets) for him to put in his chair.  It cools him down immediately, but only works for a short period of time.

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Lots of things can be affected. As I've gotten my sinemet dialed in I am doing much better.

 

Sweat, bladder, night time breathing are my three autonomic issues that seem to be helped by sinemet. Everyone is different! Most people do no need sinemet at night, but it became obvious I did much better taking 10pm dose, and maybe a 2am supplement (yes, I need to try CR sinemet... but want three months of data before any changes in medication)

 

What is also interesting to note is some improvement in sleep breathing. This is from my CPAP data, shows a typical night. You can tell when I was up wondering (no data) Just a typical night, but the breathing shouldn't stop... but be more consistent.

 

gR03z7A.png

 

 

Doing better, the increase and decrease in volume is periodic breathing. The body will regulate your CO2 by increasing/decreasing the volume of your breath. This just confirms my internal CO2 regulator is a little off. What is interesting is interesting if I do wake up and feel cramping (dystonia) I'll take 1/2 to 1 tablet.... and my breathing is back on track. Dopamine level does affect my sleep & breathing.

 

eyb6MDn.png

 

I feel great, moving much better, but Levadopa is part of my life at this point. A lot of things are subjective, but it is interesting to look at my sleep patterns as I have much better data. Sleep doc took one look at my sleep study data, had me repeat it as the findings didn't match typical patient. Pretty much looked at it with "you have Parkinson's". No surprise there!

 

If you do not have oximeter, they are cheap and highly recommended. Ideal is the datalogging unit you can sleep with, but if you are dropping O2 at night, it will cause other issues that are easily corrected by CPAP systems.[/quote

 

I take my last dose at 9:00pm and head to bed at 10:00pm I do not use a cpap I wake up due pain and stiffness and of coarse after a siezure due to drop in blood pressure. It takes a full day to even start to recover from the siezure. I have never had a problem with my breathing or snoring during sleep but the same cannot be said about my DW who does ( thank god) use a Cpap.

Edited by grunt85

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". It takes a full day to even start to recover from the siezure. I have never had a problem with my breathing or snoring during slee" quote

 

Grunt: Will you tell me more about your seizures.....if docs have correlated them at all with PD? Do you lose consciousness during the seizure? Does it start with tremor? How long do they last...are they correlated with your medication? What part of your body is involved? Do you feel like an electric current is flowing and it has to escape someplace in your body? Is there an environment that increases your seizure?

 

NN

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". It takes a full day to even start to recover from the siezure. I have never had a problem with my breathing or snoring during slee" quote

Grunt: Will you tell me more about your seizures.....if docs have correlated them at all with PD? Do you lose consciousness during the seizure? Does it start with tremor? How long do they last...are they correlated with your medication? What part of your body is involved? Do you feel like an electric current is flowing and it has to escape someplace in your body? Is there an environment that increases your seizure?

NN

My siezures are due to extremely low blood pressure (70/35) for example so the brain does not get enough blood and oxygen. The siezure happen during sleep and evolve the whole body it is called Dysatonomia and one of the causes is PD it is an autonomic neuropathy. The siezure its self is like a really bad tonic,clonic siezure except you don't loss control of you bladder but you do stop breathing. They wake my wife but not me until it's over. My cardiologist is the one that final put two and two togather. I have been going to neurologist for 8-9 years for the siezure problem and most of the PD symptoms that I have today gait, tremor, no arm swing small writing and so on. But since I went in complaining of siezures that all they focussed on and checked me siezure disorder which I don't have. My cardiologist sent me to a new neurologist and told me don't mention the siezures are that's all they will look for. When he came in and talked to me and my wife and did he's exam he looked at me and said you have PD and have for a long time here's some senimet and I will see you in two weeks. At the next visit I told him about the siezures an he goes yes it's called soandso and its part of PD.

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Yowzwrs Grunt!!!

 

What a coincidence! Ok..allow me to begin from the start..it's confusing...

 

So when I rest or try to sleep I am getting full body "seizure like" episodes that last over an hour....and are indeed like a major dystonia storm...it will,vary from place to strength...I generally seizure about ten minutes..then abruptly stop for about ten minutes...then seizure. My DH has a lot of experience with this..and says it is not grand mal..I do not lose consciousness...and am able to talk throughout the time. Lately, I actually can kinda,go,to,sleep because,there,is,no,anxiety...since I know,they will,conclude,eventually.

 

I told my MDS who is well known in the field and been with the clinic over 20 years...he acted like it had nothing to,do,with PD...referred me to another Neuro....I showed them videos of the seizures...they said it was,stress related..I took a psych test..normal..

 

So I am going Wed to readdress this...but was,actually thinking of avoiding the whole,subject...I don't want to take more meds...I can tolerate the seizures...and I thought no one really knew anything anyway...but here is,the kicker...

 

I have major disparity with BP...at night I awaken to mass head ache...BP is 250/160....then it drops to 70/50 sometimes in the day...I think I took it one time at the seizure...and forget what it was...when I mention it to my PCP, I am ignored because strangely my BP is normal when I am there...twice, I have been major stressed...like running to get there stress...and my BP was normal....I knew that was wrong.

 

I have mentioned to a forum friend about,this ...and he agreed it was Pd related and an autonomic component....I mentioned that to my MDS...and was disregarded......I have an excellent cardiologist in WA state and I thought I might ignore the whole thing and talk with him...although he mentioned to me last time he knew little about PD...

 

But NOW you have me curious again.....I seem to always get it as I am going to,sleep...if I am in action mode...like get up and walk...it stops...I think...but it very scary when it first happened...and I marvel you can sleep through it.

 

Grunt, so you are reasonably in good shape right? So when you were dx'd no one wd suspect you had autonomic dysfunction, right? Talking with your doctors...did you learn WHEN autonomic dysfunction happens during the course of the disease? like I believe I had autonomic dysfunction way before more common symptoms appeared...in fact it was an internist who referred me for MS for bowel dysfunction...because there was no structural reason for the symptoms......

 

So I am curious.....when do the docs feel autonomic dysfunction is a possibility......I get frustrated with the medical profession sometimes, but I need to remember treating PD is like shooting at a moving target in the dark....there really are very few "knowns".....but that is what is frustrating when docs will make assumption or speak in absolutes....when there are no absolutes.....so many PWP have been traumatized by being told their symptoms are psychological...it is one reason people come to,the forums...because we all know how,weird Pd operates....

 

I am impressed with your doc....and I will research the names you specified in your post...thanks so much for,responding...the timing is incredible...but that's just it...we never know how communicating impacts others....I will have a basis of discussion on Wed..but, Grunt, if I bring it up...no one listens....just like you...they focus on the seizure...did you have tests? How do you suggest I approach this?

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Yowzwrs Grunt!!!

What a coincidence! Ok..allow me to begin from the start..it's confusing...

So when I rest or try to sleep I am getting full body "seizure like" episodes that last over an hour....and are indeed like a major dystonia storm...it will,vary from place to strength...I generally seizure about ten minutes..then abruptly stop for about ten minutes...then seizure. My DH has a lot of experience with this..and says it is not grand mal..I do not lose consciousness...and am able to talk throughout the time. Lately, I actually can kinda,go,to,sleep because,there,is,no,anxiety...since I know,they will,conclude,eventually.

I told my MDS who is well known in the field and been with the clinic over 20 years...he acted like it had nothing to,do,with PD...referred me to another Neuro....I showed them videos of the seizures...they said it was,stress related..I took a psych test..normal..

So I am going Wed to readdress this...but was,actually thinking of avoiding the whole,subject...I don't want to take more meds...I can tolerate the seizures...and I thought no one really knew anything anyway...but here is,the kicker...

I have major disparity with BP...at night I awaken to mass head ache...BP is 250/160....then it drops to 70/50 sometimes in the day...I think I took it one time at the seizure...and forget what it was...when I mention it to my PCP, I am ignored because strangely my BP is normal when I am there...twice, I have been major stressed...like running to get there stress...and my BP was normal....I knew that was wrong.

I have mentioned to a forum friend about,this ...and he agreed it was Pd related and an autonomic component....I mentioned that to my MDS...and was disregarded......I have an excellent cardiologist in WA state and I thought I might ignore the whole thing and talk with him...although he mentioned to me last time he knew little about PD...

But NOW you have me curious again.....I seem to always get it as I am going to,sleep...if I am in action mode...like get up and walk...it stops...I think...but it very scary when it first happened...and I marvel you can sleep through it.

Grunt, so you are reasonably in good shape right? So when you were dx'd no one wd suspect you had autonomic dysfunction, right? Talking with your doctors...did you learn WHEN autonomic dysfunction happens during the course of the disease? like I believe I had autonomic dysfunction way before more common symptoms appeared...in fact it was an internist who referred me for MS for bowel dysfunction...because there was no structural reason for the symptoms......

So I am curious.....when do the docs feel autonomic dysfunction is a possibility......I get frustrated with the medical profession sometimes, but I need to remember treating PD is like shooting at a moving target in the dark....there really are very few "knowns".....but that is what is frustrating when docs will make assumption or speak in absolutes....when there are no absolutes.....so many PWP have been traumatized by being told their symptoms are psychological...it is one reason people come to,the forums...because we all know how,weird Pd operates....

I am impressed with your doc....and I will research the names you specified in your post...thanks so much for,responding...the timing is incredible...but that's just it...we never know how communicating impacts others....I will have a basis of discussion on Wed..but, Grunt, if I bring it up...no one listens....just like you...they focus on the seizure...did you have tests? How do you suggest I approach this?

NN

Go to Wikipedia and print the hypotension page. One of the signs of low blood pressure is siezures as you read you will see that Dysautonomia is one of causes. Pull up and print the page on Dysautonomia under symptoms you will find many things that are happening to you including blood pressure fluctuations and udder causes you will find many movement disorders including MS and PD.

Print those pages and take them with you.

Be really carefull when your blood pressure goes up like that mine hit 210/145 and I had a stroke on the right side and spent six months learning to walk again but the same is true of low blood pressure. When your BP drops rapidly you can throw a clot and stroke out from this. I use a drug called minodrine which constricts your blood vessels and raises your blood pressure back to normal.

One more thing buy a BP checker that keeps a record of your readings and show it to your Doc. Good luck stay healthy.

Grunt

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Yowzwrs Grunt!!!

What a coincidence! Ok..allow me to begin from the start..it's confusing...

So when I rest or try to sleep I am getting full body "seizure like" episodes that last over an hour....and are indeed like a major dystonia storm...it will,vary from place to strength...I generally seizure about ten minutes..then abruptly stop for about ten minutes...then seizure. My DH has a lot of experience with this..and says it is not grand mal..I do not lose consciousness...and am able to talk throughout the time. Lately, I actually can kinda,go,to,sleep because,there,is,no,anxiety...since I know,they will,conclude,eventually.

I told my MDS who is well known in the field and been with the clinic over 20 years...he acted like it had nothing to,do,with PD...referred me to another Neuro....I showed them videos of the seizures...they said it was,stress related..I took a psych test..normal..

So I am going Wed to readdress this...but was,actually thinking of avoiding the whole,subject...I don't want to take more meds...I can tolerate the seizures...and I thought no one really knew anything anyway...but here is,the kicker...

I have major disparity with BP...at night I awaken to mass head ache...BP is 250/160....then it drops to 70/50 sometimes in the day...I think I took it one time at the seizure...and forget what it was...when I mention it to my PCP, I am ignored because strangely my BP is normal when I am there...twice, I have been major stressed...like running to get there stress...and my BP was normal....I knew that was wrong.

I have mentioned to a forum friend about,this ...and he agreed it was Pd related and an autonomic component....I mentioned that to my MDS...and was disregarded......I have an excellent cardiologist in WA state and I thought I might ignore the whole thing and talk with him...although he mentioned to me last time he knew little about PD...

But NOW you have me curious again.....I seem to always get it as I am going to,sleep...if I am in action mode...like get up and walk...it stops...I think...but it very scary when it first happened...and I marvel you can sleep through it.

Grunt, so you are reasonably in good shape right? So when you were dx'd no one wd suspect you had autonomic dysfunction, right? Talking with your doctors...did you learn WHEN autonomic dysfunction happens during the course of the disease? like I believe I had autonomic dysfunction way before more common symptoms appeared...in fact it was an internist who referred me for MS for bowel dysfunction...because there was no structural reason for the symptoms......

So I am curious.....when do the docs feel autonomic dysfunction is a possibility......I get frustrated with the medical profession sometimes, but I need to remember treating PD is like shooting at a moving target in the dark....there really are very few "knowns".....but that is what is frustrating when docs will make assumption or speak in absolutes....when there are no absolutes.....so many PWP have been traumatized by being told their symptoms are psychological...it is one reason people come to,the forums...because we all know how,weird Pd operates....

I am impressed with your doc....and I will research the names you specified in your post...thanks so much for,responding...the timing is incredible...but that's just it...we never know how communicating impacts others....I will have a basis of discussion on Wed..but, Grunt, if I bring it up...no one listens....just like you...they focus on the seizure...did you have tests? How do you suggest I approach this?

To finish answering you questions! I am in far health I have had three heart attacks the last one 10:30 Christmas morning 2015 and during this hospital stay my when they checked my BP it was 71/35 and they started freaking out. I informed them that that was pretty normal laying down. This was when the light when off in my cardiologist head about PD he had ask me for many years about the tremor and my gait and it just never clicked in his brain until that morning.

As far as autonomic dysfunction many types of brain injuries can cause it and isn't that what PD truly is?

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Wow...I cannot beIiebe the coincidence of,our conversation...serendipity or,divine intervention. BTW, did you mean to say you stop breathing?

 

Grunt...thank you for the detail....you see, I looked up the term...I have had all the symptoms...interstitial cystitis, fibromyalgia, IBS, and the other one...like I said, I was referred to MS specialist for bowel...and last year I was hospitalized for a week because I had bowel incontinence...and they found no reason...my BP was fluctuating the whole time...but I thought it was they reduced my PD RX dramatically...after surgery I hv had low BP.....I take my BP ..but not regularly...good point....when I have had near fainting spells...I thought it was I messed up my BP dosage..

 

How old are you? Cuz I wonder if the docs think autonomic dysfunction happens in advanced stage..kinda like not recognizing YOPD...they don't recognize the system dysfunction I healthy appearing adults... ...and then we live with all the symptoms..and you have a stroke and a heart attack.....I tell medics 235/160... There is no comment...because they don't know what to say cuz it is so bizarre...

 

Wow...it is all coming together...but the one article I read..by an excellent doctor...said there really is no cure or anything you can do but stabilize the underlying cause which is PD...no from the forum it appears stabilization is still a challenge..and often experiments...with drugs that cd exacerbate what is going on....I kinda a, confused...because I don't trust the system...it is like the blind leading the blind...my MDS did say I shd get a second opinion and referred me to the head guy at Mayo...but I canceled the appt..cuz I was frustrated..no was just going to ride it out....

 

Sorry this is so long...but my last bad experience was about six months ago.....after my seiUre stopped, I snuggled up to my husband...I suddenly felt half my face go numb.....and I couldn't talk...my jaw was paralyzed...it was all the symptoms of a stroke...but I had had it happen before went to ER...and I was fine ...lots of tests...so I thought it might be part of the seizure thing...my DH wanted to call 911..we waited it out...my BP was ok.. I slept. Next day...my extremities turned a deep purple....again I waited til afternoon...went to urgent care...and it was a result of Amantdine....so I stopped it completely....but the doc said always call 911....cuz u never know when it will happen....But in the last few years I have had similar episodes ...gone to ER?.nd nothing...it has bn attributed to stress...but when you talk of your cardio problems...maybe I should take this more seriously.

 

This has been my gut feeling all along....so I think I can prepare to have a serious discussion because you have validated me...grunt, I will need to process this....it is kinda overwhelming ...has the l dopa reduced your seizures? The REAL kicker is I have had two DaT scans ...no they are normal...but I m classic for PD...hmmmmmmm...how long have been dealing with this?

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BTW, I have begun snoring terribly....oxygen depletion ? It is all fitting together...but I don't think I like the picture....

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Wow...I cannot beIiebe the coincidence of,our conversation...serendipity or,divine intervention. BTW, did you mean to say you stop breathing?

Grunt...thank you for the detail....you see, I looked up the term...I have had all the symptoms...interstitial cystitis, fibromyalgia, IBS, and the other one...like I said, I was referred to MS specialist for bowel...and last year I was hospitalized for a week because I had bowel incontinence...and they found no reason...my BP was fluctuating the whole time...but I thought it was they reduced my PD RX dramatically...after surgery I hv had low BP.....I take my BP ..but not regularly...good point....when I have had near fainting spells...I thought it was I messed up my BP dosage..

How old are you? Cuz I wonder if the docs think autonomic dysfunction happens in advanced stage..kinda like not recognizing YOPD...they don't recognize the system dysfunction I healthy appearing adults... ...and then we live with all the symptoms..and you have a stroke and a heart attack.....I tell medics 235/160... There is no comment...because they don't know what to say cuz it is so bizarre...

Wow...it is all coming together...but the one article I read..by an excellent doctor...said there really is no cure or anything you can do but stabilize the underlying cause which is PD...no from the forum it appears stabilization is still a challenge..and often experiments...with drugs that cd exacerbate what is going on....I kinda a, confused...because I don't trust the system...it is like the blind leading the blind...my MDS did say I shd get a second opinion and referred me to the head guy at Mayo...but I canceled the appt..cuz I was frustrated..no was just going to ride it out....

Sorry this is so long...but my last bad experience was about six months ago.....after my seiUre stopped, I snuggled up to my husband...I suddenly felt half my face go numb.....and I couldn't talk...my jaw was paralyzed...it was all the symptoms of a stroke...but I had had it happen before went to ER...and I was fine ...lots of tests...so I thought it might be part of the seizure thing...my DH wanted to call 911..we waited it out...my BP was ok.. I slept. Next day...my extremities turned a deep purple....again I waited til afternoon...went to urgent care...and it was a result of Amantdine....so I stopped it completely....but the doc said always call 911....cuz u never know when it will happen....But in the last few years I have had similar episodes ...gone to ER?.nd nothing...it has bn attributed to stress...but when you talk of your cardio problems...maybe I should take this more seriously.

This has been my gut feeling all along....so I think I can prepare to have a serious discussion because you have validated me...grunt, I will need to process this....it is kinda overwhelming ...has the l dopa reduced your seizures? The REAL kicker is I have had two DaT scans ...no they are normal...but I m classic for PD...hmmmmmmm...how long have been dealing with this?

NN

Mine all started in 2005 I was a super healthy 43 year old and active duty military on a Friday morning I ran my guys on a 20k run (12-1/2miles) and the only wierd thing to happen that day was a nose bleed which I had never had. That evening when I got home I ate and had two drinks I bent over to get a smoke and had a strange feeling in my chest that just got worse I told my wife you need to take me to the ER i am having a heart attack. I walked to the truck sit down and passed out. During the clot busting drug treatment ( I think it is Heprine) is when I had my first siezure and they went on for the next three hours. They were so bad they sent the ER doc in the ambulance from the small town ER to the trama center with me the could not start the heart cath because no drug they gave me stopped them so it took 4 hours for them to cath and stent my RCA. Come to find out the Heprine had started a bleed in the brain and the siezures were so bad I hemmoraged my retinas from that day until know 10 years it has been a down hill slid. With in six months of that heart attack my PD symptoms started and I have had the siezures every since.

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Yowzwrs Grunt!!!

What a coincidence! Ok..allow me to begin from the start..it's confusing...

So when I rest or try to sleep I am getting full body "seizure like" episodes that last over an hour....and are indeed like a major dystonia storm...it will,vary from place to strength...I generally seizure about ten minutes..then abruptly stop for about ten minutes...then seizure. My DH has a lot of experience with this..and says it is not grand mal..I do not lose consciousness...and am able to talk throughout the time. Lately, I actually can kinda,go,to,sleep because,there,is,no,anxiety...since I know,they will,conclude,eventually.

I told my MDS who is well known in the field and been with the clinic over 20 years...he acted like it had nothing to,do,with PD...referred me to another Neuro....I showed them videos of the seizures...they said it was,stress related..I took a psych test..normal..

So I am going Wed to readdress this...but was,actually thinking of avoiding the whole,subject...I don't want to take more meds...I can tolerate the seizures...and I thought no one really knew anything anyway...but here is,the kicker...

I have major disparity with BP...at night I awaken to mass head ache...BP is 250/160....then it drops to 70/50 sometimes in the day...I think I took it one time at the seizure...and forget what it was...when I mention it to my PCP, I am ignored because strangely my BP is normal when I am there...twice, I have been major stressed...like running to get there stress...and my BP was normal....I knew that was wrong.

I have mentioned to a forum friend about,this ...and he agreed it was Pd related and an autonomic component....I mentioned that to my MDS...and was disregarded......I have an excellent cardiologist in WA state and I thought I might ignore the whole thing and talk with him...although he mentioned to me last time he knew little about PD...

But NOW you have me curious again.....I seem to always get it as I am going to,sleep...if I am in action mode...like get up and walk...it stops...I think...but it very scary when it first happened...and I marvel you can sleep through it.

Grunt, so you are reasonably in good shape right? So when you were dx'd no one wd suspect you had autonomic dysfunction, right? Talking with your doctors...did you learn WHEN autonomic dysfunction happens during the course of the disease? like I believe I had autonomic dysfunction way before more common symptoms appeared...in fact it was an internist who referred me for MS for bowel dysfunction...because there was no structural reason for the symptoms......

So I am curious.....when do the docs feel autonomic dysfunction is a possibility......I get frustrated with the medical profession sometimes, but I need to remember treating PD is like shooting at a moving target in the dark....there really are very few "knowns".....but that is what is frustrating when docs will make assumption or speak in absolutes....when there are no absolutes.....so many PWP have been traumatized by being told their symptoms are psychological...it is one reason people come to,the forums...because we all know how,weird Pd operates....

I am impressed with your doc....and I will research the names you specified in your post...thanks so much for,responding...the timing is incredible...but that's just it...we never know how communicating impacts others....I will have a basis of discussion on Wed..but, Grunt, if I bring it up...no one listens....just like you...they focus on the seizure...did you have tests? How do you suggest I approach this?

And yes to question I stop breathing during the siezure and sinemit has done nothing for the siezures if anything it has made my low BP worse. I have never had the datscan my symptoms are so type A PD I don't think they needed it. I have tremor both sides now, stooped over heal to toe gait, no arm swing, choking, masking, soft speech, jaw tremor, my eyes stop blinking and many of the non motor things I can't get up from a chair without pushing to the edge and using my arms to push me up then I stand there for a while holding on until my BP comes up are I would fall over. You would think me 70 years old by the way I move not the 53 that I am.

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NN -- Have you had a sleep study done? 

 

I would highly recommend getting a recording pulse O2 meter.  CMS50F or CMS50I (latest model you need to buy off eBay, it is shipped from China as it is still pending approval to sell in USA as a medical device).  Both allow data upload to the computer, so you can print out copies to review with your doc. 

 

Those two models have rubber cushion finger grips. They are meant to be used at rest, use finger grip on best fit finger. "Watch" is big, but at night not an issue.  Transferring data to computer can be a pain, but all said and done if you are in mid 90's all is good. Dropping below 90 -- you need to show data and discuss with your doctor.

 

I didn't have a clue about apnea.   Doc was concerned as I was down around 80 at night during the sleep study.  Titration study applies oxygen, modifies a CPAP pressure when sleeping.  Huge Sat O2 level improvement with the CPAP (I'm using that as a generic term, there are many different variations and therapy's).  

 

Bottom line, pulse-oximeter is great.  A recording one that keeps overnight data could be a life saver.   

 

If you snore.... CPAP might be a good addition to getting a good nights sleep.

 

COMMENT: Sinemet at night.  It is clear it helps me with apnea's, but that is a complete mystery to my MDS and Sleep Doc, but both agree I do better.  Talk with your Doc, but everything says I'm a "six sigma" PWP (well outside the typically seen range. No doubt I have PD, nor that levadopa has a huge impact on me, but Automic functions are typically only seen in later stages.... old saying you've seen on person with PD, you've seen on person with PD). 

Edited by TexasTom
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Non-contact sleep monitor.

 

Haven't used this, but it is very interesting to read the details. Lots of good sleep tips for an infomercial.

 

http://www.resmed.com/us/en/consumer/s-plus.html

 

Same product, great tips scroll past.

 

https://sleep.mysplus.com/

 

Forum issues this morning, making it hard to post and edit my typo's!

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NN -- Have you had a sleep study done? 

 

I would highly recommend getting a recording pulse O2 meter.  CMS50F or CMS50I (latest model you need to buy off eBay, it is shipped from China as it is still pending approval to sell in USA as a medical device).  Both allow data upload to the computer, so you can print out copies to review with your doc. 

 

Those two models have rubber cushion finger grips. They are meant to be used at rest, use finger grip on best fit finger. "Watch" is big, but at night not an issue.  Transferring data to computer can be a pain, but all said and done if you are in mid 90's all is good. Dropping below 90 -- you need to show data and discuss with your doctor.

 

I didn't have a clue about apnea.   Doc was concerned as I was down around 80 at night during the sleep study.  Titration study applies oxygen, modifies a CPAP pressure when sleeping.  Huge Sat O2 level improvement with the CPAP (I'm using that as a generic term, there are many different variations and therapy's).  

 

Bottom line, pulse-oximeter is great.  A recording one that keeps overnight data could be a life saver.   

 

If you snore.... CPAP might be a good addition to getting a good nights sleep.

 

COMMENT: Sinemet at night.  It is clear it helps me with apnea's, but that is a complete mystery to my MDS and Sleep Doc, but both agree I do better.  Talk with your Doc, but everything says I'm a "six sigma" PWP (well outside the typically seen range. No doubt I have PD, nor that levadopa has a huge impact on me, but Automic functions are typically only seen in later stages.... old saying you've seen on person with PD, you've seen on person with PD).

 

Had sleep study done a few years back and didn't stay a sleep ant one time for a good report.

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For myself, The excessive sweating is a PD issue, since it began before I started taking Sinemet.  Lately though, it has been getting much worse, so I'll have to talk to my Dr. about it, as it is becoming rather bothersome.

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For myself, The excessive sweating is a PD issue, since it began before I started taking Sinemet.  Lately though, it has been getting much worse, so I'll have to talk to my Dr. about it, as it is becoming rather bothersome.

Same here! I was at the airport picking my wife up and it was just pouring off of me in the air conditioned building. I keep waiting for the TSA guy to check out thinking I was up to something.

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Texas Tom

Your quote:

COMMENT: Sinemet at night. It is clear it helps me with apnea's, but that is a complete mystery to my MDS and Sleep Doc, but both agree I do better. Talk with your Doc, but everything says I'm a "six sigma" PWP (well outside the typically seen range. No doubt I have PD, nor that levadopa has a huge impact on me, but Automic functions are typically only seen in later stages.... old saying you've seen on person with PD, you've seen on person with PD).

 

I have been a champion of 24 hr RX since I started splitting my meds and taking,it throughout the night...50/200 CR 5 x a day ... I take it as exact on time as I can...that has proven helpful as well...the protocol has not changed among physicans to recommend dosing thought 24 hrs...but it sure helped me.

 

Thank you for all the information ...and taking the time to share...Grunts post...and then your dove tailing comments are,giving me the courage to approach this again....pardon the bluntness...but I now blame the ER doc who dramatically dropped my PD dosage by 2/3 while I was hospitalized for bowel incontinence...I just kept getting worse until they had to catherize me for four days...now I can see a correlation of dysautonomic intestinal function with levels of dopamine...and at the same time I was having the cycling BP measures.... All the while having every test possible and at the end...no dx....no explanation.....

 

Wow, Tom...this is all new territory...because if this proves to be true....that I have had dysfunctional autonomic systems for years before the PD symptoms emerged...then the protocol for dx of PD will be dramatically impacted....because as more of us are discovered with dysfunctional autonomic systems PRIOR to PD symptoms or dx...it puts a whole new spin on things......

 

Another component I see resurfacing frequently among PWP....is some dramatic change to,the system precedes the emergence of typical PD symptoms.....with me..I had all the autonomic stuff...but I had 2 parathyroid surgeries in 3 mos...and never walked straight after that...hmmmm. grunt had the heart attack and stroke....and as I,have seen newbies come on...a lot of,them have had several surgeries with anathesia...or dramatic health problems...and when you see so many who have had fibromyalgia..which wasn't even called a disease...it really makes one wonder if PD is more often than not....a young onset disease.....

 

According to Kimagain....I think I just started a new ladder to climb.....sigh......

 

 

Tom and Grunt....now that we have all hashed this over...I seek your advice...1. Disregard the seizures and wait til more is known (which is what I was going to do). 2. Keep my appt with present MDS...ask for a,sleep study etc. or....3. Agree with the present MDS that I need a second opinion...and go to Mayo clinic and start over. I am SO wanting to bury this whole,thing ...and just keep on keepin on....even my husband is frustrated and thinks we should just live our lives the best we can and not be totally consumed by PD...

 

Kudos to whoever said, "you've seen one person with PD, you've seen one person with PD "

 

Thanks Tom and Grunt...I am forever grateful for your time......

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