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Topic Autonomic symptoms Go to previous topic Go to next topic Go to higher level

By mylove On 2016.10.22 21:01
Is anyone else struggling with dysautonomia? Specifically, the things like temperature regulation? Ben is really having issues with hot flashes and flushing. His temperature actually goes up a couple of degrees, he feels sick and worn out and flulike, and wants to sleep a lot. This is happening more and more frequently and really wearing on him. Everything else that could be ruled out has been, and in combination with other symptoms has become clear that it's a progression issue. I just don't know how to cope with it.

It's not a matter of taking off clothes or standing by a fan or going outside, either...he says he just feels like he's burning up inside. And if you feel his face, he is. We understand why it's happening, but I just don't know how to help him feel any better when it happens or cope with it.

To complicate matters, the hot flashes seem to cycle with periods of absolutely freezing, where nothing he can do gets him warm. So far we have been using the heated bed pad for that piece, but odds are an hour after the freezing comes the hot flashes, and his pillow, etc are just soaked.

By Sheridan On 2016.10.22 22:55
My husband has also started having problems with temperature regulation. He is frequently cold especially at night but the heating pad does help. He has not had the severe flashes or sweats yet. He has also started having breathing difficulty at seems to be positional and he sometimes wakes in a panic trying to catch his breath. Sleeps more and more. Will be bringing up all issues at next Neuro appointment. He was diagnosed 17 years ago and is now 62 and so tired from the fight. Hate this disease.

By mylove On 2016.10.23 09:15
YES. The breathing problems also! I thought it was just us. Plus he's having a lot of issues with overactive sinuses. Please share what you find out.

Sounds like your husband and mine are in the same boat. Same age/interval since diagnosis. Ben has been napping more and sleeping in in the mornings as well. He used to get up earlier than I and run all day long. All things that have changed in the past year. He says he feels like he's "winding down". That scares me.

By flowers12 On 2016.10.23 12:43
My hubby was diagnosed in 2008 and he's now 75. Just these past 2 years have been bad. He's had the drippy nose for years which we were told was a PD symptom. He's had shortness of breath off and on day and night where he panics and says he can't get a breath. This past 6 months or so he's had a lot of mucousy coughing off and on day and night with a lot of nose blowing.

I've had him to the doctor several times and we've had chest x-rays, a lung capacity test and a heart scan to rule out any problems. All tests came out okay and the cardiologist says it's PD related and so does the neurologist. He can still get around, sometimes pretty well sometimes needing assistance. Always needs help in and out of bed and out of chairs. He sleeps a lot too but somedays not so much. It's all so hard to get a handle on. I just don't know what to expect from one day to the next except that he wakes me up every night every two hours to pee. I get worried and scared too. When I hear of someone passing on this sight it just makes me so sad to know the struggles and sadness to come. I pray that I can cherish each day I have my hubby and have patience and compassion to make our days together loving.

By LOHENGR1N On 2016.10.23 16:06
The only way I know to cope with it is keeping hydrated. For years and years I been drawing strange looks from people who I'm talking to and all of a sudden I'm sweating copiously. I mean sweat literally is dripping off my beard. Some mornings and even during the night I'll waken to sheets soaking wet. And then being chilled. It'll drive you nuts if you let it. I have read several years ago it can be caused by our bodies trying to assimilate our medication. Although at times it seems to defy that cause and effect scenario. So if it can be trying to assimilate medication might it also be the extra effort exerted to move and live between doses when the medication has ebbed in our system? I don't know.....but I'm not going to say we get used to it because we don't at least I haven't. That's another one of the many unknown or little known effects of this disease. If people only knew how much more Parkinson's Disease is other than tremor and slow movement!

By Sheridan On 2016.10.23 21:35
Al it certainly does seem like temperature regulation problems are worse when meds are"off"and those times fluctuate during the day but are worse at night.
MyLove we have been using Flomax nasal spray at bedtime and that seems to help a lot with my husbands sinus issues.
Flowers I wonder if your husband would consider using a condom catheter at night so you both would not have to get up so much? I am still working and could not function with so many interruptions at night. The Caths turned out to be a God send for us!
Thanks to you all for sharing...

By flowers12 On 2016.10.23 22:07
Sheridan, I've often thought about hooking him up to a catheter, a condom catheter. I was told that they did slip off easily though. Have you seen that to be an issue? My hubby sleeps on his back and doesn't move around much at night other than his arms, sometimes he kicks in his dreams. I also wonder if because they just pee at night would they do the same during the day. He does wear depends so I guess it wouldn't be that bad. Thank you for the information.

By Sheridan On 2016.10.24 04:50
My love, sorry meant Flonase nasal spray!

Flowers the condom Caths work well once you find right fit and they are so worth it. My husband moves very little during the night but we also use Caths during the day when we will be out for any length of time

By mylove On 2016.10.24 10:31
Sheridan, we are using Flonase too! But he's still going through a box of tissues every few days. (I need stock in Kleenex!). :). He says it's due to nasal polyps, but I'm suspicious that it's another symptom of PD. It's most troubling for him when the sneezing wakes him up early in the morning and he has to get up to deal with it. I'm wondering if that's all the fluid which keeps being produced all night pooling so that it irritates his sinuses enough to start the sneezing fits. No clue, but it's sure gotten frustrating.

Al, I'm not sure about his hydration level. When I met him, I was astounded by the quantities of water (and other fluids) that he drank. Think: a pot of coffee, gallons of water, etc. Easily 2-3 times what I consume. I think that's tapered off a bit in the last few years, so it's possible that his body isn't at what was hydrated for him. In doing some reading there's studies that suggest autonomic symptoms are related to mitochondrial dysfunction. Folks who have a hereditary form of that issue are incurable, but treated by increasing hydration (because dehydration exacerbates all of the symptoms) and increasing their salt consumption. I can say THAT'S not an issue for us to do - we love our salt, and neither of us have hypertension to contend with!

If you're interested, google "mitochondrial disease" and check out their list of symptoms. It's strikingly close to PD's list of autonomic symptoms....which makes sense if they share the same issue. The sources I found also stated that in addition to the hereditary version one could develop it in adulthood as part of things like PD and Alzheimer's. All the things we never knew were connected....

For the record, at least we don't have POTS, though the neuro keeps a close eye on that.

Edited to say - just concurring with those who said the temp issues are worse during off times and at night - yes, absolutely!!! Also striking during my reading on mitochondrial issues was that those folks can have "thermostats" that are set differently than other people. For years and years and years we have been arguing with doctors that Bens normal temp is 96...which means that 99 is running a fever for him. We've never gotten anyone to acknowledge that. They think we are crazy. It was gratifying to read that we are not the only ones!

By DBKinNC On 2016.10.24 23:17
Mylove: My husband has had a runny nose for 15+ years, even before we knew he had PD 11 years ago. It is so much worse now. We, like you, mylove, should own stock in kleenex. He goes through a box every couple of days. We have boxes of kleenex everywhere he is, sits or lays down. I put him to bed with a couple stuffed up the sleeve of his night shirt. Our Neurologist said for sure it is a PD symptom.

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