My wife has been suffering from PSP-RS for 7.5 years.
Two days ago, after having breakfast with the usual ingredients: Coffee with milk and whole-grain biscuits soaked in coffee, kiwi and fresh cheese. After 90 minutes of having finished breakfast, the following symptoms occur simultaneously:
1) Intense flush on the face.
2) Abundant salivation that overflows through the mouth.
3) Fluid deposition but not liquid in the WC.
Symptoms disappear after 10 minutes and have not been repeated.
Has anyone had a similar experience? What could be the cause? Is it advisable to take any precautions?
Thank you.
Luis
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LuisRodicioRodicio
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My husband, who I believe has had PSP for about 4 years has flushing of face in relation to food as well. I'm assuming it is a reduced immune system and food sensitivity. Caffiene, dairy and gluten are all known issues. He has bloating after meals. He has apnea which is worse if he eats after 5pm. We can't use a sleeping mask but can use nasal breathing strips at night. His eyes are seriously worse within last 6 months. Very drippy wet. He also has freezing open eye stare.
Since aspiration is also common in later PSP, I notice his coughing with certain foods, and insist he has water with meals. We tried carbidopa/levodopa just to see if they had any positive effects, and for a while in addition to cannabis vaping, CBD oil orally, he seemed to do better. Hoe this helps
Could you tell me a little more about the CBD oil you use. Where do you buy it ? How much do you give him? Since these oils are not well regulated, I’d like some guidance.
Charlottes Web Original formula CBD oil (in droppers) you can purchase online at charlottesweb in the states and Canada I believe. The cannabis is a high THC we get in vape pen from the local dispensary-which requires doctors approval and state approval and a fee for each years renewal. Works best taken together. The dispensary has educated staff who can tell you what properties the blends have such as alertness, sleep, creativity, endurance, etc.
It almost sounds like normal body actions just prior to vomiting. Is it possible something at breakfast didn't sit well with her and she was trying vomit it up?
Hi Luis, it has been awhile old friend. I do think of you often and wonder how you and your lovely wife are doing. Unfortunately I do not have any suggestions for you. Isn't it amazing how many different symptoms this crazy disease can produce? John is in hospice now and for the most part is holding his own. John's eyes really give him so much trouble; double vision, watering, pain, sensitivity & etc. You just never know from day to day what symptom will appear and then sometimes go away as fast as it came, like when John was having those black out seizures. He hasn't had one in over a year and he's in a wheelchair now so he's just simply safer.
Good luck. I hope these episodes do not return.
The merriest of holiday wishes and blessings to you and your family.
Thank you very much for your message and support. I wish you the best for these Christmas Holidays and may the New Year bring hope and relief to the PSP sufferers and their caregivers.
Chris had excessive saliver several weeks ago, it was just pouring from his mouth and I came to the conclusion that he had an underlying infection. Doc put him on antibiotics and it improved.
Do hope things improve for your dear wife and that it doesn't recur.
It does sound as though it is a separate infection, Luis. Ian often has a bout of vomiting and low BP but that is just a few minutes after eating. Occasionally he passes out. We don't eat out much now, so it is just part of the mealtime routine!
Hope the weather in the north is not causing too many problems. It is cold on our mountain, but no snow yet. We've had some amazing sunrises and sunsets recently, though.
I often think of you both - it is a comfort to know someone in Spain understands.
If you are having trouble at all with saliva and secreations get a hyocine patch from gp this helps greatly when they have any trouble swallowing due to build up of fluid in throat. Make sur all fluids and food are puried and thickened xx
Thank you very much for your information and help. Among the possible causes and at this time we are thinking of a timely allergic reaction. So far it has not been repeated.
We have changing weather along the north coast of the peninsula. Today we expect almost clear skies in Bilbao and 16ºC but we have had days of quite cold, rain and wind.
The big waves crashing against the docks of the ports are a great show.
I'm curious to know, how long from the diagnosis did your wife start going downhill. I currently take carbidopa levidopa and 1000 mg of vitamin b1. Most days I feel okay. I walk with a Walker inside and use a scooter outside...
My wife has been diagnosed with PSP-RS. The first specific symptoms showed up in March 2012: difficulty with speaking as if she had a stone in her mouth and a slight tremor in the ring finger. The definitive diagnosis was done in June 2015 (after troubles in eye movements were detected, which was the specific symptom that - added to the difficulty in speech and walking instability - guided towards the PSP-RS diagnosis). DATscan between 2012 and 2015 did not confirm the suspicions about PD, PSP-RS, PSP-P, PSP-CBD, etc.
At this moment most of the types of PSP disease have not a scientifically proven pharmacological treatment which even slows progression but there are several experiences in progress in different hospitals that have not yet reached definitive conclusions.
Only some patients, type PSP-P (PSP-Parkinsonism) and during a variable time on the early stages (4 to 8 years), improve their bradykinesia and rigidity by taking Carbidopa/Levadopa/Sinemet.
Perhaps your case is PSP-P that evolves more slowly than any other PSP variant. The possibilities that researchers give with some solution increase.
Yes my movement disorder dr. First said I had atypical Parkinson's since I had no tremors,but would freeze when I tried to take my first step. He now says I have PSP. I was first diagnosed with slonm in 2014 and have had walking issues ever since. Then was diagnosed with psp in 2017.
Hi Luis, sorry I can't add to other comments on here, Ben didn't ever suffer with that symptom. It seems to be a lottery as to what symptoms will strike, a truly horrible set of diseases. I hope you manage to have some joy at Christmas time although I know it's hard to do that when you are caring for someone with PSP or it's cousins. I hope this is just a blip with your dear wife and things return to wherecthey were prior to this.
I attend a course of caregivers organized by our town hall. Your phrase: "Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!" This phrase is very popular on the course and is being very beneficial among the participants.
Thank you for being there and giving us your experience, friendship. and solidarity.
The saliva we controlled with a suction machine. Sometimes before eating. Also saline in the albuterol machine to moisten
But all food was puréed always!! At this stage she should have no other food to have to work at swallowing. Too difficult. Perhaps that’s why the drooling. She is trying to chew?
Bless you for all you’re doing for her. May your Christmas be peaceful, calm and filled with love.
We have not yet entered the stage of making all meals pure.
Chop the food with a fork or cut it into small pieces that she chews slowly. Any of the three daily meals takes between 45´and 75´. We try to vary the flavors a lot so that she do not lose the pleasure of the food.
We also wish you peaceful Chritmas full of friendship and hope.
Hi Luis, I suffer from PSP and I have the same sympton of flushing of face, neck, and upper arms. I can burn-up in a room over 18 degrees. My doctor is currently investigating the flushing and today he visited me and he almost sure it is a blood sugar condition. He says what is happening when I am flushing alot it is because my blood sugar levels are low therefore I need a sugary snack of something like biscuits mashed up with tea and a cup of tea with a little sugar to bring my blood sugars back to normal. It is due to your adrenaline glands not working properly. He suggests that I graze all day eating small portions of food which I can manage as my swallowing is a big problem now and have a sugary snack in between breakfast, lunch and tea and mid evening. He is referring me to our local hospital to see a specialist in this condition ? When my carer comes back tonight I will ask her what the condition is called and let you know tomorrow. It has worked for me all day so far. Have a lovely Christmas and all the best for the New Year.
Evening Luis, my carer has just come to put me to bed etc. and the condition is called HYPOGLYCEMIA which can occur to people suffering a rare condition ie in my case PSP. I don't know where you live but I live in England. All the best and remember where there is hope there is life. Take one day at a time and don't worry today what tomorrow will bring🎄😁
It sounds like an upset stomach to me. I have constant acid reflux that I currently take OTC medicine for. I find that if I skip taking it for 2 or more days that the symptoms you describe come pretty hard. Sometimes I also have a slight fever with the flushing. Some things that help me are: A cold compress or cool wet cloth laid on the left side on top of where my stomach actually is. I don't lie back and remain sitting upright for at least 30 minutes after my last bite. When I sleep at night, I elevate my head. I don't have an adjustable bed yet, so I use a foam bed wedge about 7 inches (17 cm to18 cm) thick at its high point.
Thank you very much for sharing your experiences that are very interesting. If the episode described above occurs again, we will measure the tension and apply a little sugar.
Luis, I agree with what everyone said .just want you to know that you are in my prayers and thoughts .May your Christmas be filled with love and peace of mind knowing you have done the best you can do for your wife .God ble
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