Difficulties Articulating (speech)

General General TN & GPN (Old Site)
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New here. A little difficult to go through all past discussions and blogs so forgive me if this topic has been well covered.

Does anyone have trouble articulating their words?

For me it feels like I am tripping over my words. My thoughts are coming out of my mouth too fast for my mouth to keep up.

At times I have to concentrate very hard to speak every methodically and at a proper pace so I don't appear to be stuttering. It can be quite embarrasing.

Is this an early sign of TN associated paralysis? Should I be speaking with my physician about this?

2

Hi Elaine,

My first thoughts were, do you get migrines? This speech mangling happens to me when I have a migraine with aura. My speech goes quite loopy, words mixed up, I misidentify objects, it's quite bizarre.

I notice form your other post that you do get migraines, so it could be that, but it would be worth discussing this with your physician. It could just be mental fatigue as a result from the pain of TN and or migraines.

j0n

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What is TN paralysis?

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Hi Elaine, I do that think it is old age with me. My brain has always gone too fast for my mouth or my fingers when typing. Mention it to your physician. Don’t worry or think it is embarrasing, people who are family or friends accept it as part of you, you are as you are. Enjoy your Christmas. Margaret

5

I have the same issue, but I think its the medications I’m on. I agree…it is embarrrasing.

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I have always attributed this to the meds. However I do agree that sometimes the pain and numbness are so bad that I am unable to open my mouth.

7

I’ve always thought that at one point I may experience a bell’s palsy (sp?) type of paralysis when the TN condition gets worse. Am I wrong?

Jackie M said:

What is TN paralysis?
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I haven't associated migraines with troubled speech. I will start tracking that. Thanks Jon.


Jon Leonard said:

Hi Elaine,

My first thoughts were, do you get migrines? This speech mangling happens to me when I have a migraine with aura. My speech goes quite loopy, words mixed up, I misidentify objects, it's quite bizarre.

I notice form your other post that you do get migraines, so it could be that, but it would be worth discussing this with your physician. It could just be mental fatigue as a result from the pain of TN and or migraines.

j0n

9


Reading your post further...you indicated misidentifying objects. I have been having trouble getting words off the tip of my toungue. I know what I am looking at, I know what it is, but do you think I can spit out the word? This is real interesting.


Jon Leonard said:

Hi Elaine,

My first thoughts were, do you get migrines? This speech mangling happens to me when I have a migraine with aura. My speech goes quite loopy, words mixed up, I misidentify objects, it's quite bizarre.

I notice form your other post that you do get migraines, so it could be that, but it would be worth discussing this with your physician. It could just be mental fatigue as a result from the pain of TN and or migraines.

10

Hi Elaine,

I have that same problem, not being able to speak the word I want to use. I also can't retrieve the word from my memory, sometimes. I call it a result of taking "stupid" pills, aka neurontin and dilantin. I take 2,600 mg. neuronton daily, as well as 300 dilantin. As far as the bell's palsey, I'm already paralyzed on my left side, during MVD surgery, I had a "stroke-like event", so I can't answer to that. But, I was looking up bell's palsey earlier this week and they said it is not uncommon among trigeminal sufferers, but in talking to many fellow sufferers, I don't know too many this happened to. I wouldn't think it is all that common, unless someone else in your family has already suffered from bell's palsey.

Jackie

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Thanks Jackie. My family Doctor is constantly asking if I have experienced any temporary paralysis so I figured it was just something that would eventually come. That gives me some hope.

Jackie M said:

Hi Elaine,

I have that same problem, not being able to speak the word I want to use. I also can't retrieve the word from my memory, sometimes. I call it a result of taking "stupid" pills, aka neurontin and dilantin. I take 2,600 mg. neuronton daily, as well as 300 dilantin. As far as the bell's palsey, I'm already paralyzed on my left side, during MVD surgery, I had a "stroke-like event", so I can't answer to that. But, I was looking up bell's palsey earlier this week and they said it is not uncommon among trigeminal sufferers, but in talking to many fellow sufferers, I don't know too many this happened to. I wouldn't think it is all that common, unless someone else in your family has already suffered from bell's palsey.

Jackie

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Hi Elaine,

Firstly, nice to meet you! Brain fog is one phrase us old timers of TN use to describe the mish mash that happens with words, word recall and as Jon says - sometimes object misidentification. Thankfully for me, it doesn't happen when I'm typing, but verbally - words are always an annoyance for me. BTW, I'm 37.

My TN began almost 20 years ago, It was diagnosed 8 years ago, went bilateral 4 years ago and I too have never encountered anyone with any type of paralysis or palsy as a direct result of TN among the wonderful communities I belong to, so if this was something to happened "commonly" I've never met anyone it has happened to. I would take that as a positive sign and not a single one of my doctors has ever asked me about signs of paralysis.

During my worst attacks, I "feel" paralysed - my jaw hangs slack, I drool, so I am unable to speak, move my head or even feel like I can walk. I'll often just sit unmoving till that attack passes over. But I know this paralysis is not a physical thing, it's a direct mental reaction to the level of pain through that attack. The doctors pain scale only goes from 0 to 10 and that's SO ineffective for us, as I personally and others will agree here - have experienced inhuman amounts of pain in certain attacks. During those kind of attacks I find my brain tells me - if you move it'll hurt more. It is not a conscious decision, and I never think much on it till afterwards - but yes, I do find during those attacks that if I move my lips, scratch my nose, any movement of muscles on the face at all - will send further shooting pains along the trigeminal nerve.

Another word issue I have is word replacement for lack of a better term - speaking one word yet meaning another entirely. In similarity to Jon's object misidentification is a naming problem. Use the wrong name for things, oh thats a hard one to explain, umm ... People around me usually have a good giggle when I do these things.

I too had always been quite sure it is the medication that causes these things, along with some memory loss - some of which is short-term, some mid-term memorys. But anti-seizure medicines do actually make a person feel "dumber" and often thats a direct result of the action these meds play on in our brain - that of slowing down the firing of the nerve impulses. That usually has a direct action on other parts of our daily lives as well, so affecting speech, balance, hearing at times, and worst of all is the lack of energy. I am SO tired all the time. I switch between being an insomniac to sleeping up to 16 hours per day. I have to stop and take my meds now, so if I have forgotten something here (lol) then I will write back later.

Best wishes to all for a pain free Christmas!

Kerry xx

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This really interests me, Did your end up deaf in one ear as well due to the MVD, I had a stroke like event during my MVD my balance is now lousy, I am deaf in one ear and one side is very weak, I have to use a walking stick all the time. They would like to do another MVD, but I won’t agree due to what happened the first time. Thought I was the only person to have this Jackie, so I am glad to be able to talk to someone else. I was beginning to think it was my age that had gone against me. Margaret.

Jackie M said:

Hi Elaine,

I have that same problem, not being able to speak the word I want to use. I also can't retrieve the word from my memory, sometimes. I call it a result of taking "stupid" pills, aka neurontin and dilantin. I take 2,600 mg. neuronton daily, as well as 300 dilantin. As far as the bell's palsey, I'm already paralyzed on my left side, during MVD surgery, I had a "stroke-like event", so I can't answer to that. But, I was looking up bell's palsey earlier this week and they said it is not uncommon among trigeminal sufferers, but in talking to many fellow sufferers, I don't know too many this happened to. I wouldn't think it is all that common, unless someone else in your family has already suffered from bell's palsey.

Jackie

14

I have had TN for 3 years and recently last Aug. had MVD surgery. I have had problems with my speech since my TN started. I sometimes have trouble tripping over my words and I have a difficult problem with the letter J in particular. I have a John and a James in my family and I get there names crossed all the time. For some reason J seems to be my tongue twister word.

I am not sure if this is tongue paralysis are not caused from TN are if it is the medication causing it. It still take carbamazepine twice daily.

I do not get migraines. I did however get optical migraines with out the headache before my TN started. I was asked one time if I had maybe had a small stroke, because of the speech difficulty.

15

Migraine can present with a whole range of neurological symptoms, particularly Migraine with aura, including expressive dysphasia. It can also present without headache, so ocular migraines are a type of migraine as the name suggests. The pain of migraine is now thought to be due to irritation of trigeminal meningeal afferents (sensory fibers), which branch off from the opthalmic branch of the T. nerve.

There does seem to be some evidence that migraine can trigger TN (in those that already have TN - presumably) and visa-versa.

Of further interest is the study which suggests that triptan medication for migraine, can give significant relief for those with TN.

Subcutaneous Sumatriptan Treats Refractory Trigeminal Neuralgia

That aside, good ole 'brain fog', could well be to blame for the difficulty finding words.

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Hi Margaret,

I've had TN for almost 10 years and have had two MVD surgeries. I lost my hearing in the first surgery and I had the dreaded cerebrospinal fluid leak, as well. But, I had two and a half years pain free from that one.

I had the "stroke-like event" in the second MVD surgery, in spite of the fact that they computer mapped my brain to avoid complications.

After months of physical therapy, including swallowing therapy to learn how to drink "thin" liquids like water, I was released from therapy because there was no muscle to nerve connectivity and they said I would be paralyzed the rest of my life. They did a lot of electrical stimulation during the therapy.

Since then, I've had a lot of spontaneous nerve regeneration and my eye now opens and closes, mostly. My mouth works, mostly, although I still have to use a straw sometimes. My eyebrow doesn't move at all, my chin muscle atrophied and I have a new dimple, my cheek muscle has sagged and it plugs my left nostril all the time. My throat is still paralyzed on one side.

I have balance issues, but not severe enough to use a cane. My brother with MS has a beautiful mahogany cane and I always tease him that when I need one, I'm just going to steal his - I really like that one! If I walk down a long hallway, I have to use the wall for guidance because I'll get vertigo from looking at the length of the hall.

I use "Cowabunga Coconut" Suave shampoo for my hair because it's no more tears and my eye doesn't close all the way and I use a baby no more tears wash for my face wash. I really wish I could find a "grown-up" version of no more tears shampoo. I really don't want to use mango or strawberry or blueberry. I want gardenia or vanilla or something nice.

Dr. Mark Linsky, Dr. John Tew and Dr. Bruce Pollack were the "experts" at the TNA National Conference and they reviewed my case. They told me I should NEVER have another surgery because of my high risk of complications. I have TN bilaterally now - about 15 months - my hope lies in medication therapy and something that hasn't been invented yet.

It's good to meet you and I hope we chat again soon.

Jackie


Margaret Gladys Mills said:

This really interests me, Did your end up deaf in one ear as well due to the MVD, I had a stroke like event during my MVD my balance is now lousy, I am deaf in one ear and one side is very weak, I have to use a walking stick all the time. They would like to do another MVD, but I won't agree due to what happened the first time. Thought I was the only person to have this Jackie, so I am glad to be able to talk to someone else. I was beginning to think it was my age that had gone against me. Margaret.

Jackie M said:

Hi Elaine,

I have that same problem, not being able to speak the word I want to use. I also can't retrieve the word from my memory, sometimes. I call it a result of taking "stupid" pills, aka neurontin and dilantin. I take 2,600 mg. neuronton daily, as well as 300 dilantin. As far as the bell's palsey, I'm already paralyzed on my left side, during MVD surgery, I had a "stroke-like event", so I can't answer to that. But, I was looking up bell's palsey earlier this week and they said it is not uncommon among trigeminal sufferers, but in talking to many fellow sufferers, I don't know too many this happened to. I wouldn't think it is all that common, unless someone else in your family has already suffered from bell's palsey.

Jackie

17

Elaine,

This does happen. For some, it is the medication. For me, I think it is the pain. One of my friends tell me that she knows when I am in pain due to the fact that I am not as articulate as usual.

The medication, I believe, causes me to take longer than usual to search for the right words in arrange my sentence, when they used to just pour right out! Strange, that I can type and the words I am searching for come out correctly. Hmmm . . .

It is interesting to know that I am not the only one who experiences this. Thanks for sharing.

Wishing you and your a Merry Christams,

Stef

18

WOW! Being brand new to this group, blogging and support groups in general I am amazed at the thread that is going on. Some great feedback on what I thought might be a totally random topic.

You guys can count on hearing from me again. I have so many more questions. Being from a small town (<10,000) I am the only one I know with TN and I have a feeling this site is going to open up a whole new world for me.

Happy Holidays!

Elaine

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Merry Christmas to everyone! I wish you all pain light or pain free days!

Jackie

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Articulating while drooling. (Priceless) : ) bob