I am happy to say that Michael has answered some or all of the same questions that Todd has. I think this will give you a good idea as to how each case of CPM/EPM is unique, but also has similarities, especially with movement, speech, cognitive issues, etc. There is a lot more research that needs to be done, and this is by no means a detailed explanation of everything that they experience, but it gives a general idea of what a person lives with.
I hope you’re ready for a great Christmas break. I hope you have a safe trip to Canada.
I’m hoping you can help me by answering the following questions. I’m trying to organize a list of symptoms that people have with this or how their injury has progressed over time. Feel free to add comments and additional comments about how the injury has impacted you. Take your time. I feel this is going to be one of the only ways to get doctors to understand how it impacts us long term.
Do you have issues with understanding with verbal directions or written directions compared to what might have happened prior to the injury?
Do you forget stories or movies or articles or recognize faces but forget the plot? – Yes all the time
Do you have jerks and twitches? – Yes in my hands, feet, head, and legs…
Do you have issues sleeping? – No I am so tired by the time I get there I pass out.
Do you find yourself easily distracted?- I use to pride my self on how focused I was on being able to complete the task at hand, now if I can sit for ten minutes and stay on one topic I am doing good.
Have you had issues with managing your finances, forgetting to pay bills or paying them more than once? – I only have four bills to pay and my wife has had to take over that because I would always forget to mail them and would wonder why why they would call the house.
Do you need help doing any daily activities, like grocery shopping?- No but I should, I can be in the store for an hour if I go by myself and only need 3 things. I will constantly forget what I am there for.
Have you had irregular heart rates?- No
Have you had hallucinations?- Yes, in the beginning i had a lot of them and it scared the crap out of me. I would be driving on the Highway and I would see people standing in the middle of the road. But now it has calmed down. Only once or twice a week i will see different thing.
Have you had any blackout periods? No
Have you had any weight gain?- No
Have you had any issues with visual problems with blurriness?- Yes, some days are better then others, but my vision is getting really bad. I don’t drive often at night unless I really have to.
(Ringing of the ears does happen with CPM/EPM. It’s a form of tinnitus. I have it in my left ear. It’s not daily. It comes and goes, but it can be rather painful when it does happen).- No
Have you had issues with smelling?- No
Fatigue? – Yes,
Any hormonal changes, like low thyroid? No
Issues with making impulsive decisions?– No
Issues with writing (typing or handwritten) such as cramping in hands, tremors, etc?- Yes can’t write anymore, my fine motor skills are shot. When typing I have to type slow because my hand twitch and jump all over the place so that can be an adventure. This is not 7 days a week, usually about 5 days.
Any issues with swallowing?-No
Any issues with understanding what someone is saying to you? – Yes, sometimes I have no idea what someone is saying and I just say ok or give them the answer I think that they are looking for.
Depression?- Yes, some days I say why me,
Sleep disturbances?- No
Sleep Apnea?- No
Numbness and tingling? – Yes, in my hands, back of my head and feet.
Balance or coordination issues?- Yes, some days / most days I walk like I am drunk.
Do you have any ongoing issues with movements? like cramping, spasms, jerks, etc. Do you have any ongoing issues with memory, concentration or learning? Do your symptoms remain constant or do they come and go?– Yes, Cramps, spasms,jerks, stuttering and drooling come and go on a daily basis. Memory, concentration, learning, numbness of the back of the head, eye sight issues, hand tremors, feet tremors are 24/7
Do you do any therapy or did you do so after being released from the hospital? – No
Have you met any doctors that have helped with your condition, neurologists/ GP? Yes, finally after going to 7 different neurologist I found one that took the time to listen and figure out how to help with my issue.
Have you experienced new symptoms or have you had continuous improvements? – Yes new symptoms sense it first started. But the doctors say it is not progressive.
Have you met any new people with CPM/EPM? – Yes on Inspire a web based forum for people to talk about their medical issues and concerns. Meet a new one this week.
Did you have any treatments immediately following the injury? Like, hyperbariatric treatments, plasmaphoresis, anti inflammatory meds? – No
What are your current medications that are helping? – Carbidopa-levodopa, Baclofen, Ropinirole, Topiramate, and Tramadol. I take these three times a day. Many many pills………….
Please feel free to leave questions or comments for me or Michael, and we can try to elaborate on anything listed.
- Understanding the Spread of Parkinsonâs (belmarrahealth.com)
- Does tinnitus go away on its own (slideshare.net)