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For years before I was diagnosed with Parkinson’s I would get this sensation in my head like I was underwater— I guess it was kind of like a muffled sound it’s very hard to describe— it would not last long several minutes maybe—and I still get them. I still do not know what it means and won’t even bother asking the doctor about. As I don’t get tremors, it took a long time to be diagnosed. Just glad I persisted and didn’t resort to “talk therapy” as 2 doctors recommended.
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My weirdest symptom:
It’s been 8 years since I was “diagnosed” with Parkinsons (at age 68). A recent symptom that appears only when I am lying on my back going to sleep at night (and have taken my 9:00 pm dose of Rytary) is what I can best discribe as a tickling, cold numb feeling that starts in the middle of my back and radiates in a wave like fashion down to my feet at a speed similar to a scanner on a fax machine. This goes on for a minute or two and then goes away.
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Tiptoes. Sometimes I just go up on my tiptoes while I’m standing and sometimes after sitting for a while, I’ll get up and my right foot will be on tiptoe while my left foot will be mostly normal. Sometimes it only lasts a moment, but I’ve had it last almost an hour. Don’t know if it’s dystonia related, but I also have typical dystonia in my hands- both issues are PD related. I’ve met another PWP who does the tiptoe thing too.
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I get a toe cramp on the left foot for 15 minutes in the morning and then no cramping the remainder of the day. The most bothersome side affect is some dyskinesia in my legs. I call it my “stroke legs”. Anywhere from 30 minutes to several hours during the day. My right leg wants to go sideways.
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Hi Kim,
I’m not sure if ours is the same, but I get that sort of feeling as well, but mine is almost as if a hot “wind” was blowing through my head, and sounds became muffled and everything became blurred. I initially thought it was a symptom of migraines.
It was finally found to be a symptom of seizures. I have “complex partial seizures of the left temporal lobe”, yea, I know it’s a mouthful, but that’s the technical term.
It is not as bad as epilipsy but a sort of first cousin. B-) … Luckily it is and has been under control for some time now.
Of course, as soon as that gets under control, PD happens. Someone is out there to get me. I must start looking around for Voodoo dolls that look like me and have pins sticking in them. At least I can laugh about it.
Kim, perhaps let them look for that.
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Mary Beth, I have a very weird symptom, which is in all probability not related to PD, and everyone is going to think I’m nuts however as you will not be the first ones to totally believe so, I’m going to mention it anyway.
Ever since I was in my late teens, I used to enjoy coffee, which I drink black and with no sugar, usually espresso. I always had one first thing in the morning and another 2 or 3 during the day.
I have a Swiss Nivona, bean based coffee machine, which allows you to make espresso, latte, cappuccino, etc. The reason I mention the machine is because about 2 years ago, now that I think about it, just before I was diagnosed, I started disliking the taste of coffee. I tried all the varients to no avail.
After that lengthy and totally unnessary description , could this be a symptom of the PD?
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Hi Clive,
The same exact thing has happened to me WITH coffee; same year as diagnoses. I did chalk it up to PD because I have read of similar things happening to others (can’t remember if it was coffee). A coffee drinker my entire adult life, I now choke it down in the morning and then drink tea the rest of the day. There are other drinks/foods that I am passionate about that no longer interest me 🙁 Don’t know if it’s due to loss of smell, but I have lost 9 pounds over the past 6 months, so it’s quite noticeable.
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Hi Clive, it could be related! Check out this article for more information about changes to smell and taste.
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I can’t eat chocolate. I used to love it and I’m still tempted from time to time – but it just makes me feel sick. Also I seem to sneeze a lot. It’s a bit embarrassing in these Covid times.
PS I’ve just read further down and discovered a fellow ex chocaholic. My sense of smell is excellent and I enjoy the rest of my food.
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Hi Katherine, how did you make the connection between hiccups and your PD diagnosis? Has your care provider seen this in other patients or is it a hunch? Thanks for sharing!
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Hi Ally,
Thanks for the info, the article was interesting. The loss of taste, smell etc symptoms seems very like the symptoms experienced by those who contracted covid badly. I wonder if one or two of the receptors are affected the same way.
However my senses of taste and smell are still good, it’s simply that I just do not enjoy the taste of coffee at all any longer.
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Hi Troy,
Thank you for your reply, it fits with my coffee dislike perfectly.
However what annoys me even more is the fact that I have started disliking the taste of chocolate like Lindt, Toblerone, Ferrero Rocher, Lindt & Sprüngli, Toblerone, Cadbury .
At times I cry myself to sleep…………..
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Every day I get a pain in my right arm. Above my elbow and up into my shoulder. It is a constant pain, not intermittent.
Alan Berry
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Hi Troy,
That heightened creativity really is a plus.
Being able to sketch, or paint or create someting must give you an enormous sense of pleasure and achievement.
Unfortunately I have always had a problem even drawing a straight line with a ruler so that is a no go for me, but it does cause an inordinate sense of amusement to my so called nearest and dearest. Unfortunately there are no laughing icons on the site so you’ll just have to imagine me laughing.
As regards the crying myself to sleep, it is only because of the lack of chocolate, although I must admit I do occassionally grab a bite of one or two, just to find out if my taste buds have regained their sense of logic. Thus far no, but I shall not give up…………….
B-)
B-)
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Hi Clive!
🙂 I can’t draw either. I’d love to paint, but I just can’t. I do create music and I am a drummer (despite my lack of coordination). I can still drum, but I’m noticing that now my hands start to cramp/tighten up while doing so. But as long as I can push buttons on my computer, I will attempt to create! I may write a gut-wrenching ballad inspired by your love for chocolate…
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Almost very night, just before falling asleep, for a minute or two I suddenly feel overwhelmingly cold, even with the use of an electric mattress pad. I must cover myself completely, so not even my face and hands are exposed. This intense cold feeling lasts for several minutes then I shake and twitch two or three times before finally falling asleep. (I believe this is not simply restless leg syndrome because my entire body tremors.) In the early morning I awaken feeling hot and sweaty, as though with hot flashes, and must throw off the bedcovers and turn off the electric pad.
Does anyone else get these feelings? Are they Parkinson’s related? I cam’t discuss this with my doctor because I don’t have one at this time. ( I’m waiting for a new doctor to contact me with an appointment.) This has been occurring for the past several years, even before my diagnosis about five years ago. I’m 81 and female.
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Weird Symptom #1: I have a real feeling that when my wife goes to the store, that my daughter Kate, who lives in Berlin, Germany, is going with her. I have even called Beth (my wife) on her cell phone to tell my daughter something , and don’t realize until it’s ringing that my Daughter (and granddaughter) aren’t really with Beth, or even in this coountry . This effect began around the same time that I was diagnosed w/PD.
Weird Symptom #2: When I am typpping, I tend to hit doublwe and triple keystrokes, as well asnovel phonetic spellings of underlying words.
Weird Symptom #3: My ability to get sexually aroused will get triggered by something, I know not what, and I can get fully aroused in minutes. Other times, I could have an erotic image or video in front of me and I get no response at all.
Weird Symptom #4: I just can’t see something I’ve lost when I’m looking right at it. Beth could be working at her compputer, and I DO NOT SEE her. This started happening several years before I was diagnosed. My glasses get lost 3-4 times a day because I just don’t see them!
Thanks,
DrummerBob
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My husband leans to the right, especially when he is tired or during off times, even running into the curb when we are walking. His neurologist said not to worry about it if he wasn’t showing signs of stroke. I Googled leaning and Parkinsons’ and discovered something called “Pisa Syndrome” associated with PD and other neurological disorders. But I got conflicting info: caused by PD meds or improved with PD meds. Has anyone else had this symptom?
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My startle reflex is off the charts. I can not control it and it causes me much embarassment. I have had if for a long time, especially so since my PD diagnosis and it is getting much worse. It doesn’t matter if I am having a series of good days or bad days and I have no issues with my meds. I make startle like noises with varying degrees of loudness. The loudness of my screams and the body shakes that come with my reflex doesn’t seem to follow a pattern in that I can scream loudly at just dropping a pen and have a lesser noise response to someone coming up behind me.
If my husband comes into the room I let out a scream, if a gun goes off on television I scream, if someone gets off the elevator while I am waiting for it I scream, if someone comes up behind me I scream, if I drop something I scream. If I almost drop something I scream. Last night I yelled so loudly at a bomb going off on a tv show that my husband thought the neighbors below us would call the police LOL. Today I dropped a piece of paper and screamed loudly. It feels like my heart is beating a mile a minute when it happens.
I would greatly appreciate it if someone experiences this, or even remotely like this, if you could please reply to this thread. Thank you.
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Hi Toni,
Yes- I have developed the wild startle reflex as well. Crossing paths with people unexpectedly, dropped silverware, etc. The worst is any kind of “out of the ordinary” noise if I’m asleep or close to asleep on the couch. I jump and all four limbs reach for the sky, like babies do when they are awoken out of a deep sleep. It’s quite incredible and sometimes entertaining for the rest of the family (who feels bad, but can’t help but be amused). As long as my heart holds up!!!
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Hi Troy,
Please don’t keep today ballet to yourself.
Love to hear the wailing and gnashing of teeth.
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On the topic of strange symptoms, is anyone dealing with excessively oily skin? I started dealing with this last summer and found that it is indeed a common PD symptom (I have early onset). It’s mostly around my eyes and then gets in my eyes, which is awesome. I use witch hazel throughout the day and I’m trying a special soap which is drying out my skin, but not stopping the oil 🙂 In the immortal words of Cosmo Kramer: “Look away…I’m hideous.” Coincidentally, yesterday I spoke with a woman whose late husband had PD and the same exact symptom. He used witch hazel too. It’s all so strange.
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It is a pretty common symptom, and has been bothering me lately as well.
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Thought I would share an update with regard to this bothersome symptom: with excessive oil + flaking, mostly around my eyes/eyelids, I finally paired up with a dermatologist who is now treating me for the sebum and seborrheic dermatitis. She’s prescribed three topical solutions that I’ve just started using. If I see a drastic improvement, I’ll share the info. Keep up the good fight, everyone.
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My weirdest symptom is depression and reckless actions out of frustration. I keep awake until midnight involved in sexting with my boyfriend and do not fall asleep even though I might be sleepy. This happens because of the need for sexual arousal which is not getting fulfilled by my husband
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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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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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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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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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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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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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@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 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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