Today was a better day because I didn’t take Keppra. With hindsight, I shouldn’t have let the doctor prescribe 2 500 mg tablets to start with. I knew better than to start an anticonvulsive drug at full therapeutic strength. In the past, doctors would give a “kit” that gave you a certain amount of pills at a low dose and then gradually increase the dosage until you reached therapeutic levels.
Because of my brain fog, I didn’t even check the new prescription. Blindly doing what a doctor says isn’t wise. Normally, I ask questions in his office and then read more about the drug when I get home. Doing this has saved me from a lot of grief. But, I wasn’t thinking straight and took the pills.
This morning I received a call from the neurology department. The nurse wanted to reply to my MyChart message. She wanted to make sure that she could get me to understand that I was crazy. She gaslighted me by telling me that although the doctor told me in person that he could easily switch me to another drug, it wouldn’t be as effective. She said the other drug he recommended might not help at all.
She also told me that I couldn’t possibly have felt the side effects in just one day. So she was letting me know that the way I felt was just all in my head or that I was lying. I was getting so mad. Then she offered to let me take the Keppra at a lower dose or to instead switch to Topamax. I told her I would take the Topamax.
It’s interesting that they want to start the Topamax at only a 25 mg pill daily. That is the correct way to start anticonvulsive medications. They need to be gradually increased to the level that is needed. The doctor made the mistake and I suffered the consequences.
You may ask, maybe it was in your head? My body doesn’t deal with medicine in a normal way. Nothing about my body is normal. For example: when my rheumatologist first prescribed Plaquenil, they gave me a therapeutic dose. I immediately became sick with nausea, diarrhea, and sleepiness. I stayed on it a month and was miserable.
I basically lost that month of my life. I called the doctor and told them what was going on. They backed me down to a tiny amount. I was to try that for 3 months. I didn’t notice any side effects. Then each month they increased it a tiny amount. When they reached 1/2 the regular dose, they had me stay on it for one year. Only after all that, did they give me the full therapeutic dose.
So, this shows how my body can’t always tolerate medicine unless I go through a very slow titration. Even if a doctor or nurse thinks that I’m just crazy, it doesn’t mean that I am. I have been medically gaslighted many times since I became chronically ill. It is very hurtful and mentally robs me of peace and comfort. I know that doctors aren’t there to be my mommy and hold my hand.
But, they are to “Do No Harm” and that’s not what this doctor did. I know we have to advocate for ourselves, but it isn’t always easy. Some days I just want to ease off all my medicines and just deal with my body. I swallow so many pills every day. They make me sleepy, fatigued, and fat. Normal people would never believe how much medicine we take.
Having entirely too many chronic illnesses makes me think I’m crazy some days. If I didn’t live in this body, I would never believe that I could have so many. I’ll go to my EMG testing and follow up appointments, but if the doctor is this unreasonable I’ll find a different neurologist.
I definitely miss the first neurologist I saw at the University of Virginia. He was brilliant and was eager and willing to try many things until we found what worked. When that stopped working, we moved on to a different thing. That’s what a good doctor does when he “practices” medicine.
I hope that as you walk your chronic journey, you’ll find good doctors and advocate for yourself. It’s helpful to take another person with you to recognize something that went over your head. If I had done this, I might not have had to go through this ordeal.
@2022, copyright Lisa Ehrman
Disclaimer: I’m not a medical expert. This post contains my experiences and opinions and is not meant to be taken as medical advice. If you have a medical concern, please consult your personal physician.
You always have to be your BEST patient advocate!
There is no one that is ever looking out for your best interest –but you.
I learned this when certain things have happened in my life.
Yes, that is true!!!
I had several doctors do this to me with thyroid meds and they almost killed me three times. They tried to say it was a mental issue even when my levels were never right. It wasn’t until I switched to a better one after doing my research that I got better. You know your body better than they do. Find a doctor or nurse that listens to you. The gaslighting can be awful with them.
Oh, that’s scary! Thyroid meds! Wow! I’m glad that you survived that awful time to get the right treatment.
Doctors know NOTHING about medication. They’ll gaslight you and gaslight you, sometimes literally to death. They refuse to believe that YOU know your own body better than they do. I always check with the pharmacist before taking anything that a “doctor” has prescribed.
That’s so true. Many times they prescribe something that has a clear strong contradiction.
Ran into this before, several times. Was on geodon and within a few days I lost most of the use of my left side. Burning, tingling, couldn’t hardly walk or close my hand. Doc was “unavailable” for talking to me. I stopped taking it. When I saw him 2 weeks later, he jumped me yelling that I was an idiot, and it was impossible for my to have had a reaction like that so soon. Didn’t I know I was crazy? Therefore I had to be wrong. I was 20. I’m 38 now. My left is still weaker, my last two fingers still partially numb.
And if you’re fat, it’s bad too. Went to several to be told my entire problem was I was fat… Nope, eventually finding the right one turns out I don’t handle certain needed vitamins well, at all, so heavy supplementation is needed. And it’s genetic, which explains things w/ my mama and grandmama. I was at such low levels it was downright dangerous, but it was all either in my head or because of my weight. (which, we found out, is linked to those problems, a low thyroid, and mental health meds. But it’s all in my head.)
It drives me insane. We live in these bodies. We know them better than anyone.
Oh, you really went through a lot. I’m so sad that you still are dealing with the effects of that doctor’s negligence. Women are treated worse, especially if we’re overweight or depressed. Goodness, I know how that is! When I tell the doctors that I had the same symptoms when I was thin, I can tell that they don’t believe me. But, you’re right – we know our own bodies. It would be really nice if they would listen to us and believe us.
Don’t quit fighting, my dear sweet lady. Question the doctors if they don’t seem right. They are still ” practicing” so they don’t always know everything. Prayers and hugs. My daughter has been misdiagnosed more times than I can remember and I had to fight for years to get my cancer diagnosed – stage 4 – stay strong, love yourself and feel free to try other things(while exploring other treatments). Doctors do not have the time to study Everything so they don’t always know everything. Don’t ignore the doctors!!! But sometimes they forget some of the older and occasionally effective non prescription remedies. A lot of doctors write you off as having ” mental or my favorite” conversion disorder ” when they just can’t figure out why you are having systems. My daughter has the worst latex allergy, and sadly, it’s in a ton of foods too, so she itches all over and gets mild rashes, but not until a day or two or longer after she eats. She found that high doses of vitamin c helps, but doesn’t cure. Not saying that is your case, but don’t give up. We love you 💗❤️ Again, don’t ignore the doctors, just be aware that they don’t have time to study everything and depending on if they are MDs or DOs, they are taught slightly different things. If your Doctors don’t believe you, try looking for other doctors. I went more 3 years with breast cancer and over 10 years seeing the stomach doctor just saying I had IBS-D, turns out stage 4 metastatic breast cancer that traveled to my abdomen. Just because doctors didn’t want to really listen to what I was telling them. We are women and if you have ANY mental health diagnosis, they seem to think you are faking or doing it for attention. If your Doctors don’t listen, FInd New Doctors!!! Some doctors don’t believe in side effects ( MDs, I am mostly talking to you) I ‘ve had several and the doctors don’t believe until you end up in the hospital almost dead. Educate yourself because the doctors do not have time to and a lot of them are not much smarter than you are, so don’t put them on a pedestal. The really good, caring ones will listen to you info and admit that they never had a chance to learn about things. Best of luck. Me and my daughter don’t metabolize certain vitamins right so we have to be careful with what we take. I get totally backwards reactions to some pills ( plug to Superior Source, no issues and great results) and even some other supplements. Doctors are just people, very few are real experts and even they don’t know everything.
Wow! You’ve been through some very bad mistreatment! Thank you for sharing your experiences, because it does give us all the spine we need to keep learning and finding doctors that are willing to learn. I’m thankful that although you had Stage 4 cancer, you are still with us. I appreciate all that doctors can do to help me and all that I can learn from others.