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What’s your most bizarre symptom?
It can be difficult to determine which symptoms are associated with medications and which ones are associated with Parkinson’s. And, in my Dad’s case, he has two illnesses, which complicates everything further. Sometimes he gets strange swelling. Other times he experiences nausea. What is your most bizarre symptom? When did you start noticing it? And have you found ways to manage it?
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37 Replies
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I understand about how two illnesses can complicate things. I have fibromyalgia as well as PD – there is always pain, but from which one? I gave up trying to match the symptoms with the illness and just look to treat the symptom as well as possible.
As for my most bizarre symptom, I call this my PD perk. I have lost my sense of smell, but not to good things like food. I can’t smell stuff like poop. I can clean out the worst smelling cat boxes if someone will just tell me they need to be done. Same with cleaning up after the dog. When we ride down the road and my husband says, “Wow, that is a really awful smell,” he knows that I have no idea about that. I have had PD for over nine years, and this symptom probably showed up early on in this journey. As long as good smells still reach me, I am very happy with how things are!
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Marlene, it is fascinating that you can still smell good aromas but can’t smell bad ones! I still have my full sense of smell, so I get to experience both good and bad smells.
It’s hard to pick just one bizarre symptom — they all are bizarre, aren’t they? Also, I have some that come and go. For example, I had a very annoying eyelid “tremor/twitch” for a couple of weeks, and now it’s gone. Then I developed shortness of breath, which I now experience occasionally but not constantly. I suppose the weirdest one is REM sleep disorder. I don’t physically lash out, but I do yell and scream some nights (terrorizing my husband).
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Jo, you struck a chord when you spoke of yelling and screaming some nights. I do that too on occasion. Usually it is in early morning, and often my husband is already up, so I don’t scare him, but he can hear me from the kitchen. I am invariably dreaming about teaching, something I did for about 33 years and loved doing. My dreams usually involve situations that I, thankfully, never really experienced. They are very stressful, and I wake up exhausted, after trying, in my dreams, to take care of situations that are out of my control.
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Hi,
Right now I am incredibly frustrated as I started this twice so far, writing quite a lot, only to have my catcher mit hands do something, I have no idea what, cause all my work to delete itself!!! Twice!! It takes so much time to try and redo things!! UGG!! This is not even my bizarre symptom lol
Like Jo S it’s hard to pick just one bizarre symptom. I have a lot of them. The one that causes me the most embarrassment is my way over the top startle reflex. I stand in front of an elevator waiting for it to open and if someone is a bit to the side inside the elevator and steps out…I scream! I lose balance and move backwards and my arms jump up in the air. Usually seeing my embarrassment people laugh and make light of it saying something like they never thought they were so scary looking. I do the same in my own condo that I share with my husband. He will just walk into a room I am in and I will scream, (and I really do mean scream), shaking me up to the point of losing balance and him saying, “I live here!”. It also happens watching a movie when some one gets shot, even though you can almost see it coming. The other day I was napping with only the screen in the door near my bedroom. A neighbour came to the screen and called my name and I jumped from my sleep screaming and so startled. (For years I have not been able to move my body that fast. Lol .) She was terrified something horrible had happened to me. That’s one of my bizarre symptoms. Drama Queen startle reflex!
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Marlene, I taught for 29 yeaes and anout once a weeek I am in some sort of classroom. Once, my students were trolls!
Becky
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Toni, I can SO relate to your post! I, too, have “catcher mitt” hands. Although I’m an excellent typist, and my tremor is in my left hand, my right hand “twitches” or “jumps” sometimes and hits keys that I don’t want it to. It’s unnerving, but since the hand is attached to me, there’s not much I can do to stop it. (Your comment about this not even being your most bizarre symptom made me literally laugh out loud!)
I also have an extreme startle reflex, although I thought it was just me. I can’t tell you how relieved I am to know I’m not the only one with this! I’ve had near conniption fits when my husband accidentally drops something or a film/TV show or music come on too loud. I knocked my glasses off the other day trying to get a fruit fly that flew into my face, as I was screaming and flinging my arms everywhere (I know I’d look like a lunatic to anyone watching me). I’ve actually jumped several inches out of my chair (a feat I didn’t know was possible) when I’ve been startled. I end up hyperventilating and my tremor goes crazy when these things happen. I never used to be this way, but now so many things literally make me “jumpy” (and screamy).
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Toni,
Your thoughts gave me a few laughs. It sounds like you’ve found ways to navigate the social situations you end up in. I give you props. I’ll have to come up with wittier responses to my own quirks. .
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I find this jumpiness very interesting. I’ve always been jumpy. Does it seem like it’s a reflex?
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Marlene,
My Dad has both PD and Ulcerative Colitis. He isn’t a complainer, so I don’t really know how the diseases impact him on a daily basis. But I’ve always been interested in the relationship between the two.
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Marlene, I have migraines,arthritis,sleep problems(Use a CPAP),asthma, a pacemaker,and several orthopedic issues,and PD. I have have screamed at my granddaughter that she was going to fall off the couch and hurt herself the problem is that she wasn’t at our house and was at school. I have seen people and heard things these people said at different times day and night and nobody is there. This problem also involves seeing things that are not there. these problems come and go.
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I often overheated without an elevated body temperature, like long lasting hot flashes. Worse during hot weather but occurs year round. I thought this might be a medication side effect but can find any correlation with timing. I asked my doctor if this might be a Parkinson’s symptom and he said maybe. Does anyone else experience this?
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Eliz — I get hot flashes, too, and I am 12 yrs past menopause. Thankfully, they are short and maybe only once a day. Naturally, it happens right after I put on a sweater!
My strangest symptom: the top of my head itches all the time!. I’ve had my internist, dermatologist and salon person look at the top of my scalp and nothing is detectible. The itchiness started maybe a year or two before my first symptoms (13 years ago). The only other guess isa pinched nerve somewhere.
Does anyone have panic attacks that aren’t related to anxiety or worries? The attacks started when I tried Rytary. I had never had a panic attack prior. After a month of using Rytary, I stopped — I could not tolerate it. It is now a year later and I still get panic attacks every two or three days!! I had more normal side effects like headaches, was hyperactive, overly-emotional and cried a lot, nauseous, and the constant smell of an electrical fire or tires burning.
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I don’t know if it’s bizarre but I don’t know anyone else who has it. When I am off I can’t urinate. But it’s difficult to do on 80 now I have to go very badly. So I have to in the night walk up and down three flights of stairs in our house to get drafted you help me do that and then I’m able to go. I wonder if anyone else has hesitant urination. It’s only bizarre because I don’t know if anyone else has it I’ve never seen it mentioned. When my meds are working, I can urinate regularly.
I can urinate regularly.
I’m wondering, if people describing his symptoms mean when they’re in an off state or also when they are in an on state ?
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Yes, I get terrible hot flashes. If it is hot it’s worse when it’s hot. I also get a feeling of being weak also. Just have to sit or lay down.
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I see that some people have TWO sets of symptoms. Is it possible to have two illnesses?
I was diagnosed in 2005 with Parkinsons. I had a slight vibration in the right arm, had trouble with writing and typing. Everything else seemed mostly okay. Most of the clinical tests supported the diagnosis, and I have accepted it as my issue.
But…. about 3 years ago, a new thing started to occur: In order of sequence it starts with a bizarre odour mostly, (but not always). That seems to be the trigger. Within seconds, I get a ringing in my ear, short shallow breaths, heart pulpitations and pain, watery eyes, stuffy nose, and then a stiff neck and an instant loss of all muscle strength, and I mean ALL. Even just sitting in a chair presents challenges with falling forward, and the rib cage pushes on the lungs, bladder drains. To finish, a feeling of being electricuted. I can literally see skin on the back of my hands vibrate, like there are 1,000 micro pins pushing from the inside. TOTAL TIME: 4 to 6 minutes from start to finish. That usually lingers for about an hour to 90 minutes, then I can feel it going away, which takes about 30 minutes.
At that point, I can stand up and walk away, as if nothing was wrong. I have had medical professionals say *What?? That’s not Parkinson’s”. While this occurs, I lose all strength but movement, gait and speech are all fine. I am able to do all clinical tasks with only muscle strength being the issue.
What I find weird is the way this thing just washes on and off with such vigor. One minute, I am fine. Then I am not. Then I get up and walk away. It is creating skeptics that are questioning my integrity, and I can not say I blame them. I have had people say that it is all in my head, if so, how can I get it out of my head?
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Rob — that sounds a bit like my panic attacks that started when I tried Rytary. Mine are not so severe but last longer. It starts with a clamping feeling on my diaphragm, especially if I’m sitting. An attack always starts at the end of a dose or just when I take my next dose of sinemet, i.e. I’m tailing off.
Following the diaphragm clamping, I start breathing heavily and cannot stand up due to dizziness. If I don’t take an anxiety med by this point (within 15-30 min) it can really ramp up. I feel my heart beating but the rate is ok. I hear the ocean in my brain (blood pressure goes up). , the rigidity/stiffness begins and pins/needles start in hands and feet and move up my limbs. A bad one can last 2-3 hours and more anxiety med. Twice in a year, I have had to go to the ER for stronger meds.
We’ve ruled out a regular panic attack. Can’t figure it out.
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I can not hand LevaDopa at all. My doctor gave me a bottle of Rytary. My anxiety got worse. I let her know and she said Rytary doesn’t cause anxiety, yet the pharmacy said it could, the written literature with it said it could, and my primary said it can cause anxiety. She got a little short and not to pleasant because I did not believe her. As she has really done nothing to help me, I see a new doctor next week. I want to ask him about a number of things people have tried that help. I am doing Mannital, 2 tsp, but started 3 today. On it about 3 months, so hoping to see something. I just started getting stiff neck so bad I can hardly lift my head up from my bad. I have osteoarthritis in my neck, hands, feet, etc but have been able to get it under control til this week. Could it be the Parkinson’s getting worse? I have had PD 2 yrs. I walk for exercise. I am 84. Hard to do a lot. Any suggestions appreciated. I have tried heat which usually helps, but not now.
Beth
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I make vocalizations that I can’t control.
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Overeating is a big problem since diagnosis. Also I wake up in the morning with very oily face especially around my nose. And I have this wired eye twitch from time to time.
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I have PIGD Parkinson’s disease – the nice thing is no tremor. I have trouble pivoting to the right. I mean I will go down everytime I try to picot to the right. It gets quite comical for my wife to watch me have to turn to the left even when turning to the right would be the logical choice. I also have primary Raynaud’s syndrome (it is idiopathic – caused by an idiot) and living in Iowa is COLD which means I am COLD all the time. Should move, but children and grandchildren are here. At any rate pivoting is a problem only to the right. Blurry vision is another symptom I could do without. Probably the strangest thing is my inability to gain weight. I have been at 170 pounds since my diagnosis 7 years ago. I guess I should feel lucky – but it is strange none the less.
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My most bizarre symptom is my ability to draw and paint as good as always, but my handwriting is totally unintelligible. Being an artist, i consider this a blessing but very mysterious. I don’t have any tremors but sometimes it feels like electric current throughout my body.
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Hi Mary Beth,
Beth here again. As I have mentioned, was diagnoised in July. However, may have had it a year possibly, and did not know.
Two weeks before Thanksgiving I lost my sense of taste. Can’t tell you how awful it has been, and I thought bizarre since I have not had this disease a long time, mostly tremors in my hands, and a little balance issues sometimes, but walking fairly well. I do sometimes have difficulty swallowing, and fighting constipation, but that has been an off and issue for years.
I only weight 98 when diagnosed and have been small all my life. Now down to 93 due to nausea with the common drug they give when you brain show no Dopamine. My movement doctor said otherwise, the brain was fine, but obviously not now, with this lost of taste, which she said is common with this disease. I was tested for COVID, although I wasn’t sick, and I am negative. This was right after Thanksgiving.
I can’t explain to my family why it is difficult to eat. I am constantly hungry, but when I try to eat, it taste so awful, I only take a few bites. I tried using various seasonings to no avail. I do drink some Ensure now, but can’t down an entire can in a day, or it sends me to the bathroom.
My daughter has me taking green veggie and fruit gummies by Juice plus. Hoping it give me things I am not getting in a diet.
I ask if anyone had any suggests a couple of weeks ago, I think it was, but heard nothing. Is this not a common thing with PD? Wish I understood why I am struggling with it and apparently there isn’t anything I can do.
Thanks for listening.
Beth
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I have chest tremors. They make it feel like I am shivering, as my entire torso vibrates. They often wake me up in the middle of the night, and are quite disconcerting.
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Shelly, I also have chest tremors on occasion. mine are not as bad as yours – my entire torso does not vibrate, and they have never woken me up – but they definitely are disconcerting, much more so than the tremors in my right hand.
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Beth, I can relate to your issue of not being able to eat like I should. My sense of taste and smell are working, and even if it is a food I like, a few bites and I just can’t eat any more. Unfortunately, this does not extend to sweets!
I do have digestive issues. Everything appears normal to the doctors, but my lower intestine hurts, I feel extremely sick and my body aches. Sudden and extreme diarrhea will hit, and even if I am at home, often I cannot make it to the toilet. If I am not at home, sometimes I can find, and/or get to a toilet in time, but not always. Once the attack has passed, I feel fine.
does anyone else have this symptom?
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I was diagnosed a month ago but it’s moved at lightning speed. I just began having a head and shoulders tremor at times. It just gets weirder.
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Here’s one nobody has mentioned. Not to be gross, but often I’ll have very wide and long stools. No problem passing them but a lot of problems flushing them down. My GI doctor said might be caused by my meds. I take 15 pills a day for diabetes, two cardiac issues, Gerd, depression, high cholesterol, to name some. My PD doctor, MDS, said might be because my autonomic nervous system is no longer rhythmic. Who knows?
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I never thought of this as a PD problem. Like you, Charles, I have many health issues and lots of daily medications. I was diagnosed with PD over 10 years ago, and for many years this was also part of my reality. Even had to have a plumber in on one occasion. The plumbing solution was to find a very long shoehorn and slice up the stool (of course then scrubbing the shoehorn squeaky clean!). Happily for me, my digestive system has changed and I no longer have this situation.
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I was diagnosed with PD in early 2018 and began taking carbidopa levodopa. For the first 12 months or so, I wasn’t sure if it was helping or not. And then I begin to notice something strange (to me a at least). About an hour or so after taking carbidopa levodopa, I become somewhat disoriented with slurred speech; this seems to last up to, two hours. And about three hours after taking the dosage, I get back to “normal”. I have found that if I take a nap for about an hour after I take the pills, I get back to normal sooner (i.e., after about two hours). Also, if I get on my stationary bike for about 30 minutes as soon as I take the pills, I can get back to normal sooner. What is puzzling is why would the carbidopa levodopa cause these symptoms that are more associated with the need to take more carbidopa levodopa? It is as if the pills cause me to an
“off” period before I can get back “on”.-
I’m new to this and I felt disoriented too after the med and thought it was a weird response. This whole thing is weird. But I take it every four hours so there I go again. Looking forward to people’s response. I really need help getting through this by experienced people.
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Jeanne, what I have been doing is to take my normal dosage at about 6 o’clock a.m.(2 CL pills). I then go back to sleep for about two hours. When I wake up, I feel pretty good; not wobbly. An ten o’clock, I take one tablet and do this every two hours until about 4 o’clock p.m. I’ve got a good doctor and he is okay with this approach. I try to maximize the amount of time between meals and taking CL using this schedule, but I don’t worry about the absorption. There are a lot of conflicting opinions on this and the most recent data I’ve seen suggests you do not have to worry about it. When I take my CL (it is an immediate release), I crunch tablets into a fine solution and then I swallow them with about 4-8 ounces of water. My doctor also suggested that I try Rytary as a substitute for CL. I have not done this yet. Well this strategy helps to minimize the wobbly feeling I get when I take two pills, it doesn’t always work out. When this happens, I skip a dosage and then get on my stationary bike for about 20 minutes or so. This seems to get me back on schedule (one pill every two hours). I am aware that the CL is benefiting me, particularly the slurring of my speech improves rather dramatically, but it certainly doesn’t do anything for my balance. On Some days, nothing seems to work, but the next day ‘ll have a good day?? Since there is so much variability in a Parky’s response to the different kinds of medication, I personally do not have any issues with a little experimenting.
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Blood pressure variations during course of the day. Often very high first up in the morning before taking any PD meds. Sometimes after taking meds – so low that cannot even get a reading. Cardiologist said it is a very complicated issue not easily controlled. Overall average during course of the day is usually normal to low.Here is one example.
152/101 @7:53 take first med at least 1/2 hour before breakfast
64/47 @ 9:41am take meds about an hour after breakfast
80/49 @ 1:29pm about an hour after lunch
121/68 @ 7:31pm about an hour after dinner
average of four readings is 88/52
Anyone else with such experience.
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