NeedHelpWithMom Asked March 2023
So many people have had adverse reactions to treatment, from mild reactions to severe. How have you dealt with this situation?
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So many people are struggling to find the right treatment for their medical condition.
My mother suffered with Parkinson’s disease and dementia. My father had heart disease, high blood pressure, bladder cancer and a stroke.
My brothers have dealt with serious heart issues and diabetes.
My mom was a patient at a teaching hospital at one point in time and she often felt like she was being used as a guinea pig for experimental purposes.
What do you feel is the best way of communicating with our doctors about adverse reactions to medications?
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It is truly sad that people don’t speak up when they need to.
Mom told me about things but wouldn’t always tell the doctors. That generation felt intimidated by their doctors.
Mom had Parkinson’s disease and Parkinson’s patients can struggle with low blood pressure.
I took her to the ER one Saturday morning because she wasn’t feeling right. She was on BP medication due to having high BP earlier in her life.
After she was diagnosed with Parkinson’s disease she was still taking the medication and her BP dropped too low. The hospitalist took her off the BP meds and she improved.
I went to a teaching hospital for my allergies. The tech was supposed to give me injections in one arm one week and the other arm the next week and then both arms the following week.
I caught him messing up my dosage and did speak up. First, he argued with me. I politely asked him to check his chart. Then he saw that I was correct.
Well, one day I was leaving the hospital after getting my injection and I decided to stop by my parents house to say hello. It’s a good thing that I did. I had a systematic reaction and nearly died. My dad took me to the nearest hospital and they treated me immediately but it’s so frightening to have adverse reactions to treatments.
Trust me, they appreciate that type of communication instead of you waiting until the next appointment to tell them something isn't right.
Most of my life I have been pill sensitive, turn out my Mom had the same issue.... never knew that until she was in her 90's as my parents were always hush hush when it came to personal health matters.
With pills, it could be the filler that makes the pill large enough to pick up.... or it could be the binder that holds the pill together.... or the coating that makes the pill easier to swallow.
Currently, I am searching for a vitamin pill used for Macual Degeneration that I can tolerate. I tried the over the counter ones, nope. Recently an eye specialist had recommended Focus chewable, nope as the citrus flavoring messed with my Gerd. Now I am trying the regular Focus pills, so far so good... we might have a winner here.
In the past, I remember when doctors would hand out sample packets. Haven't seen samples in a long time. My eye vitamin try outs were around $50 a bottle. Expensive experiment. Sig-other is just starting with Macual D, so I will save those unused bottles for him. He never has any side effects.
I don’t think most of us pay attention to fillers being an issue. Thanks for pointing this out as being a potential problem.
It's all too big. (I could say the same of government. Education. You name it. Almost everything and anything. Even the grocery store.)
Add to this that our MDs used to be the Marcus Welbys. No, they couldn't save us from much of ANYTHING but it was a comfort that there was only ONE KIND of dementia then and it was called senility, and a comfort that only one man (yes, usually a man) followed us from cradle to the nursing home.
If Marcus couldn't help us as much as the specialists of today to whom we are tossed like so many bones, he was at least THERE, seeing us in the office, in hospital, and even at home. It was a comfort. Because that young Hospitalist with his or her head stuck up the computer????? He or she doesn't know us from ADAM, right?
Between our EXPECTATIONS and REALITY is where STRESS lives. And I am afraid it is now about 60% stress in anything at all these days.
I never have the answers to your complex questions, Need. And I surely don't now.
I have severe allergies. When I was tested by Tulane Medical Center years ago, the results were that I was allergic to everything except for two things.
My brother with serious heart problems has an allergy to bees. His allergist prescribed an EPIPEN for him to use. When he told his cardiologist about the EPIPEN, the cardiologist said that he couldn’t use it due to interfering with his heart condition.
All sorts of circumstances can complicate things when taking meds.
One day when Mom was walking with me, I was probably 5 years old, the doctor was out in his yard and he noticed I was walking pigeon-toed. He called out my Mom and I guess had her buy me a pair of "corrected shoes" which I wore for many years, which looked like regular shoes. Just thinking, today's doctor probably would never have noticed that because the nurse leads us into a room, the doctor never sees the child walking.
For decades, doctors have observed a link between PD and melanoma, studies consistently show that having either Parkinson's disease or melanoma more than doubles risk of developing the other disease.
Now he was diagnosed with that as well.
Either taking levodopa and cancer is going to get worse or not taking it and motor skills get worse.
I am so sorry that this has happened to your husband.
My mom also took levodopa for her Parkinson’s disease. She lived to be 95. It was so disheartening to watch her health deteriorate over the years.
My heart goes out to you and your husband.
Read about your Mom dying last year I believe, still she lived long life, but the suffering with PD and all symptoms and susceptibilities to many conditions are better understood now. The sad thing neurologist cannot offer much more than levodopa.
I agree. Your husband’s situation is very, very sad. I will keep him and you in my thoughts and prayers.
We live fairly normal life as my husband is very independent type and he has no dementia at all, so lots of things he can do and enjoys learning and maintaining interest in many things which takes him away from pain, which is more and more a problem, his back and neck even with 2 surgeries last year.
We used to do lots of things and traveling was big thing, more than 40 trips together in less than 20 years, we managed to go to Mexico this winter for one month, however, sad to say I know it was our last trip together.
It is good thing when he was diagnosed 7 years ago, (probably had it before for at least 2 years), but, we lived and enjoyed a lot, did not pay too much attention to this cruel disease, as it would not change anything.
Sometimes I think a quick trajectory of disease is so much better than suffering forever, yet, we all want LOs to live longer. It is a struggle.
I do agree with you that lingering with a disease or illness is extremely difficult. I hope that will not be the case for him or you.
I wish you peace as you continue to care for your dear husband.
Medical treatments all have side effects, many of which are unknown to doctors themselves. We can get 15 different opinions on what's going wrong with any given treatment at any given time by speaking w 15 different doctors. Spin the wheel and take a chance that treatment 1 will work and not cause more side effects than it cures. Or try treatment 2 and cross your fingers. Or watch treatment 3 give you brain damage but perhaps prolong your life by a year.
It's all a crap shoot, no matter how we "communicate with our doctor" on the subject! Half the time they have NO CLUE what your side effects will be or even how to treat it. It's rare so who knows? How's that for an medically educated guess? 😑
Advocate for yourself. Get another opinion. Throw the meds in the trash if they disagree with you. Take them if they don't. Make the sign of the cross and hope for the best, basically. That's where I'm at these days with doctors not communicating properly between THEMSELVES on our behalf.
I agree that it’s a crap shoot. I sometimes believe that it’s all trial and error.
I understood why my mom felt like she was a guinea pig when she was being treated for her Parkinson’s disease. They would try this or that, adding a drug, taking away a drug, and trying to find the correct dosages.
Yeah, it is true that every medical treatment will have some sort of side effects. It may help in some ways but be harmful in other areas.
The entire thing becomes a roller coaster ride for many that are patiently waiting for their ride to end successfully.
I also list all of my allergies/reactions to all meds I’ve tried and quit.
The third section lists meds that I’ve taken in the past, and what they were for.
I keep a copy of this list in my purse, and hand a copy to the med tech that begins each appt. They are usually VERY thankful.
The spreadsheet is really helpful in stressful situations,
We can’t rely on our apps that we install from our portal. My daughter has found errors on her app that she had to inform her doctor of.
Need to advocate for yourself, for loved ones.
If you do not get the answer that you are looking for or are not satisfied with the response then you ask for another opinion.
If you have adverse side effects you put your foot down and make it clear that you need to change the medication. Everyone is different and not all side effects are listed and someone may have a reaction that no one else has had. These should be reported.
You need to be completely honest with your doctors. If you are taking OTC medications, supplements they need to know. If you are using drugs not prescribed you need to let them know. If you drink you need to let them know and how much.
As to your mom...being in a teaching hospital. That is what a teaching hospital does., They teach medical students. Going into a teaching hospital you expect that a certain level of instruction is going to occur.
And lastly if you are not happy with your doctor you can go to another.
*I heard what might be a funny comment last week...
What do you call a Medical Student that graduated at the top of his class?...Doctor.
What do you call a Medical Student that graduated at the bottom of his class?... Doctor.
Love your response.
After more than a 15 years of taking Donepezil (Aricept) my husband started to hoard feces. I wasn't aware that it was a result of this medicine, who would, but I mentioned it during a dementia caregivers' support group meeting and one of the members told me to ask my husband's neurologist to take him off this medication. The neurologist and his nurse corroborated this side effect and added that it was of no help at this point anyway to continue his daily dose. He was eased off Donepezil and this nasty behavior ceased.
My husband still takes Memantine (Namenda). It's been more than a month that he complains about headaches and he's experiencing psychosis (he tells me that other people are in the house and I've observed him having whispered conversations to several "ghosts"). While writing this I wondered about Namenda and just now read that these are two of the side-effects. Oh man.
Thanks to reading your inquiry I don't believe I would've associated that behavior with a med either. Tomorrow I'll call the neurologist and ask to stop Memantine as well. What remains is Sertraline.
In my opinion most dementia drugs are to prolong…what?
Beside an endless succession of more drugs to combat the side-effects of previous drugs we are spending more and more money and Pharma has a good cash cow business going on. Before my parents died they were taking 16 meds a piece and the grand finale was that my mother live 4 months, instead of 3 months, tortured terribly with chemo. The doctor would make his daily rounds sweetly smiling, nodding, patting hands and raking it in.
I take nothing except sleep aids from vitamin shops and the occasional alprazolam to help me sleep. Mostly I work myself into a coma.
Medications to give comfort is important. Hospice is a blessing.
I am so sorry that you and your husband have been affected by not only his health conditions but from the issues that arise from treatment.
It’s true what you say about prolonging our lives with meds. I suppose that we do have to weigh the pros and cons and decide what is best. There may come a point in time where we decide against doing anything else.
Many people decide that it isn’t worth it anymore to live in agony if meds aren’t helping them in any way.
I agree with you on hospice. If we are able to find a good hospice provider then we will be able to receive comfort care during our final days of life.
Wishing you peace as you continue to care for your husband. It’s a challenging process and I am sure that you are exhausted.