How did you know? Aphasia

TY Colleen, I wish I could see instead of depend on spell check

I was prescribed this medication by a doctor at a University headache clinic in Kentucky for a continuous headache I had had for over a year. It's been probably 14 or 15 years ago but although the headache did not go away, my IQ lowered significantly. What I experienced was the inability to understand language at normal level. I would have to try to dissect that a person was telling me. Like one word at a time until I understood. Also I have a friend whose son who has a seizures disorder took this medication when he was five and he said he could not think or find words. This is my experience with this drug.

New here, I never had a seizure until I was in late 20s. Later diagnosed with epilepsy. Was put on Topamax and I swore up and down it was making me worse. I did finally get off it but what I and my family/close friends call my 'word thing' is getting worse daily. I have to describe things bc I don't know the word, I go mute bc I can't speak correctly, I'll feel like the missing word is on the tip of my tongue yet can't say it, write, or describe it. I was never like this until that med. Mentioned it to multiple specialists and they all keep saying the Topamax is out of my system (after 5 yrs) and that I should see a psychologist. A friend is fearing its aphasia and now I am too. I'm wondering if I should request another EEG. Would it even show up?

@marie03 I can see how frightened and frustrated you are feeling. Word finding problems (expressive aphasia) is real and there are many reasons why people experience this. Are the words you have trouble with mostly nouns such as names of people? Places?

What is your age now? I couldn't quite figure that out from what you wrote.

Are you taking any other medications? There are medications for hypertension (high blood pressure), for instance, that can cause the type of word finding problems (expressive aphasia) that you describe. Also, some of the older antidepressants such as amitriptyline that are rarely prescribed for depression these days but are prescribed for migraines can cause word finding problems.

Do you have any difficulty with speech comprehension - understanding what is said to you (receptive aphasia)?

Do you still have epilepsy? Seizures? I don't know if an EEG would give you the information you are after but you can ask your doctor that question.

I know, lots and lots of questions from me! I'm trying to do some problem solving here to help you figure out where to go next.

If you'd like to be evaluated for aphasia in the context of brain-related disorders I suggest that you ask for a referral to a clinical neuropsychologist. Clinical neuropsychology is a speciality within psychology that evaluates for memory, language, and thinking skills.

-- https://www.apa.org/ed/graduate/specialize/neuropsychology

Can you provide me with more information so I can support and help you?

I feel like the word thing is a daily word. Used in every day conversation. Person to person, on TV, in songs...yet when I try to rewind or have a person repeat what they say I don't notice it. I honestly can't say if it's a noun. I know it's not a name or place. I don't think it's even an object. I can be cooking and suddenly it crosses through but I don't know it. It actually happened at the beginning of typing this.

I'm 34, 35 on the 3rd. Still have epilepsy but the tonic clonics have lowered tremendously. I've been diagnosed with tonic clonic, Complex partial, and simple partial. All starting on left side of brain.

I also have Lupus, sjogrens, and Raynauds, and horrible anxiety due to seizures and my husband's motorcycle accident. I take Trileptal, amlodipine, alprazalam, cellcept, hydroxyzine, and gabapentin (which is new).

I sometimes have trouble understanding what's being said. I know there's been tons of times where ppl will be talking to me and I'll just be standing there obvious. Or there will be times where I seriously have to have something repeated more than 4x and even then I'm trying to figure out if I heard it correctly.

I use to write, read, honors English in hs. I was that annoying person who corrected others and now...I feel like an idiot. It's so embarrassing.

My friend who is worried sometimes wonders if im having a seizure when I go mute.

I have been taking a high dose of Topamax for many years now. It’s been a great life-saver for migraines, but definitely some “word loss” has happened for sure. My neurologist was on top of it early and prescribed Namenda for me (usually used for dementia). I’m 48 now and have been taking Namenda for probably 10 years. My 78 y/o dad takes Namenda too. 🙂 I get weird looks from any new doctors when they see Namenda on my med list until I explain it is to counteract the Topamax side effects. I think it is kept them manageable. Plus, w a parent w dementia, I will gladly do whatever I can to prevent it happening to me as I age to the extent I can.

Best of luck to you all- and if you have an option to discuss Namenda or something similar, I would say it is worth it. I tend to have side effects from almost every med and haven’t seen any from this one.

@marie03

We aren't medical professionals here on Mayo Clinic Connect so we cannot provide medical advice. I just wanted to make sure you know that. I asked you all those questions because I was trying to help you figure out where to go and who to see to get some answers to your word finding (aphasia) problems.

Thank you for all the information in your reply. You provided a good description of what happens when you have that tip-of-the-tongue phenomenon but can't quite say the word. That tells me a lot in getting a word out because it means that you can retrieve the word (it's on the tip of your tongue) but it gets stuck during the very last stage of actually saying the word.

I can imagine how terrible it feels to have these word finding problems when you were so fluent with all things English not long ago. Would it help to let the person you are talking to know that your difficulty in speaking is due to a medical condition? I know someone at work who speaks slowly and pauses often to find a word. She let us know from the very beginning that she had a serious TBI many years ago and that this affected her speaking ability. So no one interrupts her or tries to fill in words for her and we give her plenty of time to talk. She's a valued colleague and a lovely person to work with.

When your doctor suggested you see a psychologist, did you get the impression that this mean the aphasia is due to anxiety? I wondered about that because I saw that some of your medications are for anxiety. I'm going to tell you that it really irks me when a doctor hasn't problem solved with a patient and leaps to the conclusion that it's "psychological". You are being treated for other medical conditions and take medications. It only makes sense to tease this apart and figure out where the aphasia is coming from. The aphasia could be from years of taking topomax or from the seizure activity itself or from something else. Only a doctor can answer those questions and a neuropsychologist can figure out what's anxiety/depression vs. actual changes in the brain.

Will you talk with your doctor about where to go next to get this figured out?

I understand yall arent professionals but i will say its nice and rather comforting to know theres others to speak with.

I will be seeing the nuero within 2 weeks. Thanksgiving evening I ended up having another grand mal. I felt it coming and once again, my word thing started right before it happened. Had one early Sept. Been free from them for over 2 yrs then suddenly. Just seems like as my word finding issue gets worse, the Seizures increase.

Also wanted to make it clear that my word finding isn't to where I can even pinpoint the 1st letter. I know it's a word but being that it's a daily conversation word, I can pick it out. Most ppl I speak with including kids teachers know that I have this issue. Thata why we call it my 'word thing'

hi! i really hope you dont mind me asking , but my sister is currently struggling with her speech , mostly stuttering, since taking the drug and I noticed that you said 'had', so I was wondering if you could tell me whether you know if the speech impairments are short term effects that'll wear off or can be something long term. no worries if not 🙂 x

Hopefully you won't have to ask much but that you're dr will give you a good explanation and maybe answer questions you didn't know you had. My husband, who has dementia, was shown the pictures of his MRI and it was determined he needed to see an alzheimers neurologist. What she was explaning was confusing and I didn't understand alot of the terminology, but I was glad she was thorough. I'm hoping good things for you.