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What’s your weirdest symptom?
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Someone mentioned hiccups…me,too. My MDS says it is definitely PD related. Also sneezing.
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Sorry Troy, how I typed ‘today’ instead of ‘the’, is a mystery.
I can only put it down to old age. That’s my story and I’m sticking to it.
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Hello Everyone! I’m new to this forum. Was officially diagnosed with PD a few months ago although I’ve had shaking/tremors for about 5 years.
My unusual symptoms are I tightly clench my jaw and purse my lips…I look like Dr. Sardonicus! Also sometimes it feels like my tongue is too big for my mouth and I talk like I’m drunk. These symptoms do not occur all the time.
I also startle very easily.
Thanks for reading and your feedback!
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Hi Cynthia,
I also clench my jaw very tightly, to the point of giving myself a head ache but what I am really interested in is what you said about your tongue. I have that too. My tongue seems to fill my entire mouth and the sides of my tongue are often sore, some times bloody, due to my teeth biting it. My tongue is always in the way. If feels as if it is swollen. I very much appreciate your input as I thought I might be the only one. I am sorry about your recent diagnosis Cynthia. I hope you have loving support.
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Hi Toni! So nice to meet you! And thanks for letting me know I’m not alone with the teeth clenching. Yes, my tongue feels like it fills my entire mouth sometimes but not so severely as you experience.
Thanks for the kind words and I’m sure we’ll speak again soon. Please take good care!!
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When I get undressed at night and put on my pjs I get chills from my head to toes. My head also starts to itch for several seconds and then it’s over.
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My weirdest symptom is GERD which started about one year before I was diagnosed. I lost 30 lbs. in 4 months because of the GERD and have been unable to put any weight back on. At 5’9″ and 108 lbs., I am extremely thin to the point that I can easily see my ribs. I eat part of my meal and the GERD rises up and makes me stop eating. It doesn’t matter what I eat. It can be bland or even nuts and it will start up, mostly in the afternoons and evenings. I’ve tried Ensure and protein shakes to gain weight, but they immediately cause GERD. It’s always worse if I lie on my left side. The only thing that I’ve found that helps this is baking soda water, plus I take prescription Pepcid everyday. I haven’t seen anyone mention this and wonder if anyone else is bothered by GERD.
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It sounds like you might have Gastroparesis (GP). Shortly after being diagnosed two years ago, I developed GP, or paralyzed stomach that doesn’t digest and move food into the small intestines. I have lost over 30 pounds. 40% of all PD patients have some form of GP. Daily nausea, and the only approved medicine (Metoclopramide) increases tremors so the doctor won’t prescribe it.
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Hey John, I had a similar experience right before I was officially diagnosed with Parkinsons disease. I woke as usual in the morning, went to use the bathroom and all went well there. I came out of the bathroom to take my morning meds and boom the worse pain ever in the stomach area. It took me almost 14 minutes to yell loud enough for my husband to hear me as it was so bad I couldn’t move. After tests and 5 days in the hospital I was diagnosed with an Ileus which sounds very similar to what you had. Until the bowel moved and an MRI was done to assure there wasn’t anything there that shouldn’t be and to vonfitm the diagnosis. I have had digestional issues with motility issues with swallowing bit was ignored as GERD. I went to a nutritionalist and she has me drink warm lemon water twice a day or bitters that help create more saliva which helps breaks down your digestion and has stopped my constipation issue. STRESS is my number on issue that will put me in a tailspin and tantrums so I take a .25 twice a day of Valium to help control them .
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I am extremely talented person having multi-faceted personality. Singing, acting, dating, painting, teaching are to name a few. As I was detected with Parkinson at the age of 41, I could not pursue any of my hobby.
Now that I have been feeling much better with right medication and my super busy lifestyle …..
No one appreciates my talent. When I give my best at either painting, singing, recital of poetry, nobody cares a damn about me.
This is my *Weirdest system”.
To expect positive feedback for my talent.
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I am extremely talented person having multi-faceted personality. Singing,acting painting, teaching are to name a few. As I was detected with Parkinson at the age of 41, I could not pursue any of my hobby.
Now that I have been feeling much better with right medication and my super busy lifestyle …..
No one appreciates my talent. When I give my best at either painting, singing, recital of poetry, nobody cares a damn about me.
This is my *Weirdest system”.
To expect positive feedback for my talent.
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Hi Patricia,
I’m so sorry that is horrible, and usually chronic. Is there no medicatioon that your gastro can prescribe?
As far as I know it has nothing to do with PD, however as we know it affects different people in differing ways.
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My gastro prescribed Famotidine (prescription Pepcid) and that helps some, but doesn’t completely do the trick. Both my gastro and my neurologist (MDS) said it is being caused by PD. Very frustrating indeed.
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Hi Cynthia,
I have a similar situation, however I do know it is related to my migraines.
What I suggest, and it has worked for me, is to have your doctor/neuro give you botox into your jaw muscles.
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Patricia, I wonder if something like Liquid Hope would help? My husband used it when he was on a feeding tube, but some folks use this formula orally and say that it tastes good. It is completely plant based and very nutritious. You can google it or Functional Formularies, the company that makes it. I hope you find something that works for you.
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I have had migraines for almost 40 years, but the GERD started in 2019, the year before I was diagnosed. I haven’t heard of botox into the jaw muscles for GERD. I can see that possibly helping with migraines though. I had botox in my forehead for the migraines and didn’t help unfortunately.
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Thank you. I’ll check into liquid Hope and see if that’s something my system can tolerate without causing GERD. Any glimmer of hope helps!
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A recent post told of a remedy they had used for nightmares: GabaCalm and ? We are seeing the neurologist today and I wanted to ask him about these two remedies but I can’t find my note on it. Does anyone remember the other one?
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That was Gaba calm and taurine. It’s what my husband takes. It’s still handling his nightmares etc after 3 years. He will occasionally yell out in his sleep. That’s all
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Shortly after being diagnosed two years ago, I developed Gastroparesis (GP), or paralyzed stomach that doesn’t digest and move food into the small intestines. 40% of all PD patients have some form of GP. Daily nausea, and the only approved medicine increases tremors so the doctor won’t prescribe it.
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Hi Patricia,
Botox into the forehead would be totally useless for Migraines, although it will help with wrinkles. 🙂
One of the primary causations of migraines is muscle tension in the jaw, when you clench your teeth, perhaps while you are sleeping, I normally get hammered at about 03:00, and the muscle tension into the muscles of the back of neck and shoulders and surrounding area.
Of course I am not talking about chocolate/coffee/etc, although none of those affect me at all, different things affect different people.
Tell your neuro to inject the botox into your jaw lines and shoulder muscles.
I promise you it will make an enormous difference. Just remember it takes 2-3 days for the botox to work.
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Thank you Clive. Migraines aren’t my main concern. GERD is my biggest problem with PD, although I have many more non-movement disorders. My gastro doctor ran the full gamut of tests and was perplexed when nothing showed up. Once I got my diagnosis and told him about it, he said, “Well, that explains it.”
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Just before I was diagnosed with PD over two years ago, I had regular GERD which was a result of a hiatal hernia. They repaired the hernia, then it reoccurred again 18 months later, so they did another hiatal hernia repair (both surgeries were done orthoscopically, thank goodness), It got rid of the GERD, but immediately after the 2nd repair I developed Gastroparesis (GP) and have been dealing with daily bouts of nausea the past year.
To help food move out of the stomach, they shot botx into the sphincter (valve or hole from stomach to small intestines) last March which did not provide any relief from the nausea. Next month, a Gastro in Phoenix will do the G-POEM surgery where they actually slice around that sphincter to enlarge the opening for food to move through more easily.
There is a stomach emptying test they can do to determine if you have GP.
I am eager to get the GP resolved so I can get back to an exercise routine to help with the PD.
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Hi Patricia,
I have no doubt that your gastro has recommended the life style changes necessary as well as H2 blockers and Proton pump inhibitors, but a new study that has come out is Acupuncture.
“In one study, treatment with acupuncture stopped reflux in the test group better than PPIs, with results that lasted longer. We need more large studies to confirm this, but early results are promising.”
I must admit I am skeptical however they say it does work. I suppose there is no harm in trying.
Good luck.
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That’s always my thought process, too: “Why not give it a shot?” And sometimes I’m surprised at the results!
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Weirdest syptom 1 : Slow growth of hair on the top of the my head!
Weirdest syptom 2 : Slow growth of some of my nails
Weirdest and painfull syptom 3 :Excruciating pain and ache covering my entire right leg and inner part of my left arm
Weirdest syptom 4 : Excessive sweating ( I’m so helpless )
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I have chronic rhinitis – a box of tissues only lasts a day or two – and watering eyes, both symptoms of which have been attributed to PD.
But my weird symptom is a tingly sensation in my index finger when urinating! I cannot recall whether the sensation occurred before I was diagnosed about 8 years ago. -
RBD, hands down, no doubt. Just last night I was enjoying an RBD dream. I was walking along the railroad tracks with a friend, dragging my coat behind me. It caught on something and I was pulling at it, trying to get it loose as the train was coming. I tugged and tugged at it, until my wife said, “Sherman, are you awake?” I was sitting up in bed, tugging at the covers. Suddenly I was awake. I sighed and answered, “Yes,” laid back down and went to sleep.
Since starting melatonin a couple years ago the dreams have become less frequent and less violent, but they still happen once in a while, but it is still weird to wake up and find myself acting out a dream. My wife tells me I vocalize a lot, am usually angry and swearing. I rarely swear when awake, so that behavior is out of character.
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Hi Sherman,
My very first RBD dream involved me dreaming I was Bruce Lee, who, though extremely awesome, was well before my time. I knew of him, saw a movie or two on TV, and that was it. My wife and I both woke up to me kicking her in the ribs (I was dreaming I was doing a flying kick). This was prior to diagnoses and so we had no idea what was going on. I’ve since bought a t-shirt with Bruce Lee doing a flying kick to commemorate the occasion.
In my case, l-dopa + Mirapex and a weighted blanket has helped most. But if I don’t take enough l-dopa, the Mirapex isn’t as effective. I don’t respond well to melatonin, for some reason, though I wish I did and know many that do. It’s amazing the similarities that we all experience and for myself, so helpful to learn of different experiences and solutions, etc.
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Early on in my PD journey, before I was diagnosed, I clomped like a horse for a few days at home: my feet smacked against the bare floor. This happened before my balance grew worse.
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@Troy, or is it Bruce Lee? My neuro told me that only about 25% of his patients respond to melatonin. I had used it for a while years ago for sleeping problems and thought it was ineffective then, but RBD motivated me to dig for more info. The bottle dose is typically 3mg, but I read on a reputable site I could take as much as 12mg, so I started with 10mg. Later the neuro told me I could increase it to 15mg, which is my current dose.
In my dreams I have been a basketball player (wife’s pillow was the ball), dragon slayer, attacked by giant scorpions and an amorphous blob, and fought off bad guys countless times (wife is usually the bad guy). I never used to dream, or at least never remembered them. RBD has made bed time much more interesting. I cannot have a lamp on the nightstand nor a cane near the bed and recently relocated my pocket knives. Anything that could become a weapon needs to be far away at night.
Just one caution if you should go for a sleep study: Think very carefully how you answer questions dealing with kicking or punching in bed. In some states therapists are required by law to report it as “domestic violence” even if you are unaware and unable to control your actions.
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Hi Sherman! You have had some amazing dreams! Scorpion dream would have sent me off the deep end. I’ve been attacked by dogs and I think pushed out of a moving vehicle. Last week a friend and I were mocking the Los Angeles Angels (long story)! That one had no action but the passion alone woke me up, half off the bed. Haven’t fallen out yet and aside from the now controlled kicking, only punched head board thus far. Like you, no dreams or remembrance prior to PD.
Thanks for the helpful info and cheers!
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Hi everyone,
My strangest symptom is my eyelids always want to close. It drives my wife crazy because she thinks that I’m sleeping when she’s speaking to me. It also happens when I’m eating and watching TV. I’m not currently driving because of this. My Neurologist insists that it’s not a symptom of PD or caused by PD. However, it didn’t happen prior to my diagnosis. When I pressed him for what else it could be, he had me tested for <b> myasthenia gravis (MG)</b>. Thankfully, that came back negative. I did also ask my optometrist about it and she said I may have excess tissue around my eyelids that need to be removed. However, I still think it’s related to my PD.
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I too have problems with my left eye shutting. My Retinologist says it is definitely PD.
weirdest complaint is I will sit at desk for 1/2 hour, then I get pain in thigh and have to stand for 1/2 hour and repeat….Knees get into the act as well.
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I think I know the usual culprits and I’ve got my share of them. So this forum is a great place to uncover the low frequency, weird ones. I have a bump near my shoulder blade, right side. Any one else?
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Yakim, l have trouble with my trapezius muscles tightening up. They connect the shoulder blade to the neck and will feel like a hard bump at the top of the shoulder. A physical therapist can work them out. It took about 6 weeks of therapy to get mine to relax, but it is worth it. Untreated it can become very painful and lead to cervical radiculopathy. You don’t want that.
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Good morning, I have 2 weird symptoms, when I close my eyes in shower or at sink to wash hair/face I become imbalanced (wobbly) and need to hold onto handrail/sink. Other one is tingly feeling all over body all the time.
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Hi Mardi,
I’ve encountered the same exact experience in the shower with eyes closed. I slipped a few weeks ago and manged to catch myself with my elbow on the wall. I now use a shower chair to lean against so that I maintain my balance. It’s been very helpful. I also have standing low blood pressure, which I guess is common with EOPD and so I use an abdomen binder so that I don’t get lightheaded/dizzy throughout the day. I don’t know if the two issues are related.
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My symptom is an urge to run all of a sudden and run between rooms in the house falling down after hitting the wall or doors and door jams. If I am outside and I get the urge to run, I run until I fall. I have been to the emergency room and critical care place 4 times this year for stitches from falls.
- Has anyone one else had this urge to run and have fallen as a result of running?
- If so, any know of recommendations for alleviating this situation?
Thanks
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