New arrival, another question :)

[Mira]

Hello everyone and please forgive yet another new arrival with perhaps an issue that has been dealt with before.

About 20 years ago whilst working in PR for a busy hotel, I suddenly developed a speech problem, not so much a stutter as in pppplease but more of a spasm of my mouth whilst speaking and the words would come out all malformed. At the same time, my mind would go blank for a second or two and I wouldn’t know what it was that I wanted to say. This would always be aggravated by lack of sleep. But I didn’t even need to be speaking to someone, I could be at home alone watching TV or reading and my mouth would just suddenly twitch. After getting all sorts of tests for suspected anxiety disorder, I was prescribed Rivotril (for epilepsy), which, whilst not getting at the root cause, at least alleviates the symptoms. I’m still taking this drug today and if I ever run out, which has happened on occasion, I dread having to interact with people, especially over the phone.

Long essay! Sorry! Is this some form of epilepsy as I cannot believe that I have been suffering from anxiety for so long and also during extended periods where I have been feeling relaxed and enjoying myself. Has anyone else experienced this?

I must add, that nano-seconds before I start "speaking funny", I feel it coming and know what will happen.

Thank you very much for your input.
Mira

 

[huskymom]

Hi Mira, and welcome to the site. While I really don't have any input to your problem, I am sure that someone will be able to help you out.

 

[Nakamova]

Hi Mira, welcome to CWE!

Were you ever given an EEG test? If you were, and if the results indicated epilepsy, then that would tend to confirm an epilepsy diagnosis. (If you had a negative EEG, that wouldn't necessarily rule it out though.) Another roundabout way to test for epilepsy is to prescribe anti-seizure drugs and see if they work. Since that's been the case for you, that suggests that some sort of seizure activity is going on, or possibly migraines (a close cousin of epilepsy).

Best,
Nakamova

 

[Mira]

Thank you huskymom & Nakamova

No, I've never had an EEG test. I don't suffer from migraines so an EEG test is something I may enquire about when I go see a neurologist later this month. I don't mind taking this medecin if it helps me but I would like to know what is at the root of my problem and if there is perhaps some other way of handling it.
Thank you both for your welcome and your replies!
regards,
Mira

 

[qtowngirl]

Welcome Mira!
My thought is a similarity to 'simple partial' seizures; good to hear you have an appt with a neurologist coming up. Some info:

Simple Partial seizures are usually put into categories depending on the type of symptoms the person experiences:

MOTOR seizures:
These cause a change in muscle activity. For example, a person may have abnormal movements such as jerking of a finger or stiffening of part of the body. These movements may spread, either staying on one side of the body (opposite the affected area of the brain) or extending to both sides. Other examples are weakness, which can even affect speech, and coordinated actions such as laughter or hand movements.

SENSORY seizures:
These cause changes in any one of the senses. People with sensory seizures may smell or taste things that aren't there; hear clicking, ringing, or a person's voice when there is no actual sound; or feel a sensation of "pins and needles" or numbness. Seizures may even be painful for some patients. They may feel as if they are floating or spinning in space. They may have visual hallucinations, seeing things that aren't there (a spot of light, a scene with people). They also may experience illusions—distortions of true sensations. For instance, they may believe that a parked car is moving farther away, or that a person's voice is muffled when it's actually clear.

AUTONOMIC seizures:
These cause changes in the part of the nervous system that automatically controls bodily functions. These common seizures may include strange or unpleasant sensations in the stomach, chest, or head; changes in the heart rate or breathing; goose bumps.

PSYCHIC seizures:
These seizures change how people think, feel, or experience things. They may have problems with memory, garbled speech, an inability to find the right word, or trouble understanding spoken or written language. They may suddenly feel emotions like fear, depression, or happiness with no outside reason. Some may feel as though they are outside their body or may have feelings of déja vu ("I've been through this before") or jamais vu ("This is new to me"— even though the setting is really familiar).

It sounds with the twitching you could be experiencing motor and with your mind going blank it could be psychic. Some people experience just one, others have to go through them all.
Again, this is just a thought, but I give it because not only do I know partials WELL but I also agree with you about not experiencing anxiety like that for 20 years, esp. at times when you're relaxed and feel good. It just doesn't make sense, added to the fact that the aed's are helping, AND that when you're underslept your symptoms get worse. Lack of sleep is one of the main triggers for a seizure.
Good luck with your appointment, hopefully they can figure some things out with the right tests (and no worries, eeg's, mri's, ct scans... if you have to do them, none of them hurt, they just take a bit of time out of your day).

 

[RobinN]

Hi Mira - your post spoke my language. I was quite frustrated with the approach I was receiving when my daughter began having seizures. I followed the "rules" for a while, but I was not pleased (putting it mildly) that the symptoms were being addressed but not the root cause.

The meds were not helping my daughter, in fact she was experiencing more side effects and more seizures on meds. But yet I was told and believed I had to leave it up to the "experts". They knew their textbook information, but did not take an individualized approach with my daughter. They attempted to peg her into a round hole, and most things just did not fit. I knew her better than they did, and watched her spiral into a dark place. I wish I had know about alternatives from the beginning, as it would have saved a lot of heartache. Conventional medicine has one approach and that is to stop seizures, not finding causes. Alternatives are not a quick fix, and most patients want it fixed NOW.

I then learned how nutrition play such a profound role in the health of the brain. I have been on a steep learning curve here, as well as dealing with a teen that wants to eat like her peers do. She has not been on meds for over 4 yrs, and is now seizure free for the past year. Purely by managing nutritional choices. No "diet", just wise, healthy choices. She is an athlete so her body demands were a lot greater than the average, and her hormones were also out of balance. Nutrition plays a huge role with both. Working to make sure all organs healthy, (liver, bowel, kidneys, etc) have helped in her success.

I have to also add that she did neurofeedback treatment for about a year. Of course I don't have a blind study to prove that this was helpful, but I do have a mother's instinct to believe that it did. (and never underestimate the power of a mother's instinct).

I was not willing to let a rock go unturned when it came to finding answers. I have shared my daughters (and my story) which is linked in my signature. It is quite a few years of "two steps forward, one step back" that I know has helped others in their search for answers. Let me know if I can support you in any way.

 

[Mira]

I'm afraid that my answers will not go to the right people! Am a bit bumbling trying to figure out if this will go to one or both people who replied...
to gtowngirl:
Thank you very much for your informative reply. I find that I actually have several of the symptoms you mentioned. Motor: speech disfunction / Sensory: weird smells which I thought must have been sinus-related, frequent ringing in the ears and nearly every night waking up several times with pins and needles in the arms / Autonomic: accelerated heart beat for which I take another prescription and maybe Psychic: that lost feeling for a couple of seconds when I don't know what I'm supposed to be talking about. Wow. And all these years it was supposed to be anxiety and I have had to visit a Psychiatrist only for the prescription! It may well be anxiety but I now have a better basis for discussion. Thank you very much for this.
Mira

 

[Mira]

I'm afraid that my answers will not go to the right people! Am a bit bumbling trying to figure out if this will go to one or both people who replied...
to RobinN:
Thank you SuperMom for sharing your experience about not letting the "experts" have the last word. As I mentioned before, my medication works most of the time and I'm very relieved about that but maybe I could be doing something else instead or as well? Nutrition is another issue I could discuss with the neurologist later this month. Thank you very much for suggesting this. Visiting Psychiatrists for my medication is not much fun, I mean I feel as if I'm mentally challenged in some way and I kind of try to slink off into corners so nobody will notice me Thanks for the input!
Mira

 

[qtowngirl]

You're welcome... any of us will try and help on anything that we can! I know I sure don't know everything there is to know about e but Simple Partials would definately be my area. I HATE THEM! Mine are (every time) of the psychic state, which instantly bring on fear for no reason. I will be in an absolutely fine mood (or stressed out of my mind - it comes whenever the hell it wants), and bam! Terrified! I also experience autonomic (stomach rolls over and my face flushes).
I read a post one time (can't remember which e site) in which a woman described her simple partials as like a quick clip of a dvd playing in her head, and they were the same every time. BINGO! In my mind is the same person (which over the last couple years has become a few people) every time and they are always doing/saying the same thing. Too hard to explain tho-I'll stop there.
However, as a few others have put on here earlier today in other posts and I have to agree... our epilepsy has shaped who we've become, whether we like it or not that's who we are now. I shake my head at the idea that if I end up going through with surgery and it was to work I don't think I would know who I was anymore.

Mira... if it turns out this is actually the beginning of e for you, I say 'welcome' again. It's a tough road hun but women can handle anything, plain and simple.

 

[valeriedl]

I know alot of times during a seizure I'll have slured speach or I'll know what I'm saying isn't what's actually coming out of my mouth. Sometimes my lips will start to tingle before a seizure too.

It took me a several different meds and dosages before I stopped having seizures 3 times a week. I am still having seizures but they aren't as bad as at first.

As said having an EEG could help you get things figured out.

 

[Mira]

Thank you valeried!

I know alot of times during a seizure I'll have slured speach or I'll know what I'm saying isn't what's actually coming out of my mouth. Sometimes my lips will start to tingle before a seizure too.

It took me a several different meds and dosages before I stopped having seizures 3 times a week. I am still having seizures but they aren't as bad as at first.

As said having an EEG could help you get things figured out.

It's an agonizing thing not to be able to speak properly at times, i.e. the thoughts just don't get translated into the proper words or they get mispronounced... it really helps me to know that there are others out there with similar problems although i wouldn't wish upon anyone...
thank you for your reply, much appreciated!
Mira

 

[valeriedl]

Joining this site was one of the best things I did. It's really nice to know that I'm not the only one who does things during a seizure, certain meds don't work for me and a whole lot of other things. It's good to know that you can help people with the things that they are going through too.