Doubting wife's diagnosis

[Raskolnikov]

I am writing on behalf of my wife, who was recently diagnosed with having partial seizures, and who hates writing on the Internet. Both of us are doubting the diagnosis, however, or at least the doctor's aggressive treatment (in our opinion) and we wanted to get a reality check from people who have lived through this. Thank you in advance for any advice.

My wife was having symptoms of tingling/numbness in her arms and face, and occasional smell hallucinations. She was concerned about MS, and was referred to a neurologist, who she has seen only once. The neurologist ordered an MRI and an EEG. The MRI showed nothing, but the EEG evidently had some sort of abnormality. The doctor's nurse called us up two weeks ago, told my wife she having partial seizures and the EEG showed a risk of, or a possibility that she has already had, a more serious seizure.

My wife was advised not to drive, use sharp knives, etc. for at least six months, and was given a prescription of Tegretol, and a meeting with a doctor is scheduled in three more weeks (two weeks from the initial phone call).

We have not yet been able to talk to the doctor, and havent been able to get an appointment earlier than three weeks from now.

The tegretol seems evil. Lethargy, weight gain, moodiness, bouts of depression. The behavioral restrictions are also adding to her depression, as she sees a significant loss of personal freedom, and being cut off from things that she loves to do.

This seems an awful lot to go through when my wife is unsure she has ever had a seizure, and has not been able to get a neurologist to even explain the diagnosis to her.

Is this sort of thing common? Diagnosing seizures from an EEG and occasional smell hallucinations (burnt toast)? If so, is it normal not to be able to even talk to a neurologist for 5 weeks and be given your diagnosis by a nurse over the phone? Is it normal to be prescribed AEDs without knowingly having had a seizure that has impaired her life in any way?

Mostly at this point, we are trying to figure out if our doctor is a quack, whether we are being badly treated, and whether we should seek a second opinion now or wait until after we see the doctor in three weeks.

If my wife is indeed at serious risk of seizures and aggressive drug therapy now can prevent it from becoming a problem, we will be on board with all of this, but right now it seems like a lot of pain for a non-problem.

Any advice?

 

[RobinN]

Considering the last two years for my daughter, it is my opinion that "aggressive" drug therapy actually caused more seizures for my daughter. For my daughter at the age of 14, Tegretol caused vision loss for mins to days at a time.

I must say one thing that I have learned.... there is nothing "normal" about this disorder.
Anything and everything is possible. It is your decision (and your wifes) to decided how you will approach her therapy. IMO it doesn't seem like a lot of symptoms to jump into the world of anti seizures drugs, but that is my approach. I am a bit of a rebel here, and like to look into the cause of the disorder rather than slapping a bandaid on it.

There are a multitude of alternative therapies that help with neurological disorders. The meds tend to cause additional problems, and they don't always eliminate the first reason that you began them.

There are some folks seeing a reduction in symptoms by taking magnesium. This is a mineral that the body needs.

http://www.coping-with-epilepsy.com/forums/f22/magnesium-1300/
http://www.coping-with-epilepsy.com/forums/f22/magnesium-cure-epilepsy-3439/
http://www.coping-with-epilepsy.com/forums/f22/thyroid-dysfunction-seizures-2738/

 

[kayakmom]

I am sorry that this is happening! I would not be comfortable start a medication before seeing the neurologist either. Since she is having side effects with the new medication I would contact the office again and ask if you can talk to a DOCTOR via phone call in the mean time. (politely)....I am assuming that she is going up slowly on the Tegretol as the typical case would be. I would ask if you can hold at the current dose since she is having such a hard time.

I would also look for a second opinion since you are not too happy with how this office is managing her care already. It is extremely important to find a doctor who works well with you and this can be highly personal and individual. It is stressful to have a new diagnosis.


I am NOT a doctor but what you DO describe does sound like it is possible for partial seizures. ( as it can be for other things as well). the abnormal EEG does make it more so for seizures, however. She might not realize she has been having seizures! I did not, even though I had dealt with my son's for many years. Doctors missed mine for over 12 years! Mine were thought to be part of Sinus disease!
Here is a good explanation of simple partial seizures. I can also have the Burning smell as well as tingling.

Best wishes! I hope that you get answers and help soon!
Ginny

 

[kayakmom]

Simple Partial Seizures from Epilepsy.com

From Epilepsy.com

Sensory seizures like mine
"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; sweating; or 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)."

Who gets them?

Anybody can get them. They may be more likely in people who have had a head injury, brain infection, stroke, or brain tumor but most of the time the cause is unknown.
What's the outlook?

These seizures often can be controlled by seizure medicines.

What else could it be?

Medical disorders such as, stomach disorders or a pinched nerve can cause some similar symptoms. Hallucinations can accompany psychiatric illness or the use of certain drugs. And some symptoms (such as déja vu) are experienced by almost everyone at some time. Whether the symptoms represent simple partial seizures depends on how often they occur and whether they are associated with other episodic changes or other seizure types.
How is the diagnosis made?

A complete medical history and physical examination can help to rule out other possible causes of the symptoms and assess the likelihood of epilepsy.

Who gets them?

Anybody can get them. They may be more likely in people who have had a head injury, brain infection, stroke, or brain tumor but most of the time the cause is unknown.

What's the outlook?

These seizures often can be controlled by seizure medicines.

What else could it be?

Medical disorders such as, stomach disorders or a pinched nerve can cause some similar symptoms. Hallucinations can accompany psychiatric illness or the use of certain drugs. And some symptoms (such as déja vu) are experienced by almost everyone at some time. Whether the symptoms represent simple partial seizures depends on how often they occur and whether they are associated with other episodic changes or other seizure types.

How is the diagnosis made?

A complete medical history and physical examination can help to rule out other possible causes of the symptoms and assess the likelihood of epilepsy.

ALL of these you can be aware and respond to people around you unless they go into a complex seizure (spread to a wider area of the brain)...


Here's another link to read up on:

Simple Partial Seizures - by eMed


I hope this helps!
Ginny
"

 

[brain]

I agree with Ginny's Post:

1) You shouldn't start any medication(s) without
having seen or going over with the Neurologist or
Epileptologist first.

2) I'm even more concerned to the fact as how
this "Doctor" is even putting her on the medication
in the first place?

WHY?

You just cannot SLAM a patient on AEDS!
You have to titrate them on to it; and they have
to be monitored during the progression - which it's
known as "honeymoon phase".

3) I'm a very strong advocate for 2nd Opinions; and
I recommend that you and your wife to go for one;
there are several ways you can do it:
a) via your Primary Care Physician's recommendation
b) Epilepsy Foundation's Center (if overseas, please
post on board, I have access to overseas Epilepsy
Chapters, Organizations, et cetera) - and just click
on the Epilepsy Foundation logo below and find a Local
Chapter or you can even find a Doctor in this manner
c) Contact the major Hospital and request for their
best Epileptologist (if available) or Neurologist that
specializes in Epilepsy & Seizure Disorders.

4) No - it is not unusual for one to have seizures and
not even realizing it; it must have been a shock to the
both of you! But I strongly recommend that if you cannot
get a better rapport with the current Neurologist you have
now ~ you need to find one that you can; for this is very
important!

 

[skillefer]

Hello! Welcome to CWE. I'm sorry to hear that you've had such a lousy experience with your neurologist. I totally agree with what Ginny and Sharon posted above. My advice would be, to get a second opinion if you can but most importantly, to find a neurologist that will take the time to talk with you and explain everything. As for the side effects, lethargy and weight gain...actually, they're pretty common when people start taking seizure meds. With tegretol, you might also find facial hair. I had a friend that took it and got 2 or 3 facial hairs that she would tweeze.

The doctor probably put your wife on seizure meds because with epilepsy, if you go uncontrolled (whether by alternative means or meds), the seizures can get worse. Also, not all seizures are the kind that are usually shown in the movies. Some people can carry on a conversation while having one. I had a friend that would rub his fingers together. That was the form his seizures took. Sometimes, it's just a staring off into space. Seizures can be really easy to miss.

Not driving, swimming, or taking a bath alone are normal restrictions that are placed on us until the docs can make sure the meds are working.
In the meantime, to help your wife take back some control over her life, I suggest that she start journaling. Write down everything she eats and drinks and how much. Also write down how much sleep she gets every night, as well as any stressful events during the day. And I don't just mean emotional stress...I mean physical stress too, like working out or getting overheated. Also write down any over the counter medications she takes, as well as any other prescription meds she takes, and how much. Also, write down any strange behaviors, the "burnt toast" smell , or blanking out (staring off into space) episodes. All of this information can help her doctor (whether you choose to stay with her current doctor or seek a second opinion. ) Also, in the process of writing all of this information down, you may find that there appears to be a pattern.. For example, some people here have seizures that are triggered when they get too warm. Others are photosensitive and need to stay away from strobe lights or flickering light effects. Stress and sleep deprivation tend to lower our seizure thresholds too. Also, for me, if my blood sugar gets too low, it will trigger a seizure. So I end up eating 5 small meals a day.

The thing to remember is that seizures do NOT have to end your life. Your wife is still the same person she was. She can still continue to have goals and aspirations for her life. E is not the end of the world. So stay strong. Tell her hello for us...and I hope the info you got here helps. Also, check out the Epilepsy 101 thread....it gives some good basic info.

 

[Raskolnikov]

A bit more info:

1) My wife was ramped up on the Tegretol, but it went pretty fast, up to her current dosage in 6 days. She has been there for about a week now.

2) The possibility that my wife is having simple partial seizures seems plausible, but what is frustrating us is the lack of understanding of how that diagnosis was arrived at. Is a seizure the only explanation for a smell hallucination? We have no clue, which results in us being forced to trust the opinion of a doctor we have met once. We have had enough experience with doctors to know they ain't always right.

3) We did request that the doctor call us. She attempted to once (27 hours after the request), left a message on our machine, with no number to return the call. As such, all of our communication has been done via her nurse.

I think what is really scaring me, other than the uncertainty, is the depression. If its a side effect of the drug, I am hoping it goes away soon or that they switch meds.

I will talk to my wife about tracking triggers, but its a challenge as she is not even sure when she is having a seizure. I get tingling in my arms too, but its carpal tunnel, and its hard to reliably tell the difference between a smell that isn't there and a smell that is just hard to locate. To make things worse, my wife has a very acute sense of smell. She once smelled that someone had left a gas stove on from outside their house, at a picnic, with no one else smelling anything. Could be she is just smelling the neighbor's burnt toast.

She hasn't had any tingling or weird smells since she started the meds, however, so that probably means something.

Thanks for all of the advice and information!

 

[kayakmom]

a very good and reliable drug resource is found at RXList. Go there to look up side effects for Tegretol. Yes, I am sure, between a possible diagnosis of seizures you did not expect and the new medication being brought up too quickly that depression is expected.

I would call the office again and insist on the doctor's call. This care is not typical or adequate when she has not had this explained. Say that she is feeling depressed on this medication with inadequate explanation of a powerful Antiepileptic medication with an FDA warning on it. (recent, do not be alarmed, it will just get them on board)....You have a right to be talked to by a doctor. Things CAN move very slowly to get into the doctor, but usually you are not placed on medication until you see the doctor. You could ask if she can have the dose slowly tapered down until she can see the doctor because of the side effects. DO NOT go off this medication without a doctor's consent because it can cause seizures doing that as well as other issues. (it is not a medication you can just stop all at once)

your pharmacy can also get you accurate information. Try asking her primary doctor for help either to get in faster or to find a secong opinion.

best wishes!
Ginny

 

[forward2007]

A bit more info:

1) My wife was ramped up on the Tegretol, but it went pretty fast, up to her current dosage in 6 days. She has been there for about a week now.

2) The possibility that my wife is having simple partial seizures seems plausible, but what is frustrating us is the lack of understanding of how that diagnosis was arrived at. Is a seizure the only explanation for a smell hallucination? We have no clue, which results in us being forced to trust the opinion of a doctor we have met once. We have had enough experience with doctors to know they ain't always right.

3) We did request that the doctor call us. She attempted to once (27 hours after the request), left a message on our machine, with no number to return the call. As such, all of our communication has been done via her nurse.

I think what is really scaring me, other than the uncertainty, is the depression. If its a side effect of the drug, I am hoping it goes away soon or that they switch meds.

I will talk to my wife about tracking triggers, but its a challenge as she is not even sure when she is having a seizure. I get tingling in my arms too, but its carpal tunnel, and its hard to reliably tell the difference between a smell that isn't there and a smell that is just hard to locate. To make things worse, my wife has a very acute sense of smell. She once smelled that someone had left a gas stove on from outside their house, at a picnic, with no one else smelling anything. Could be she is just smelling the neighbor's burnt toast.

She hasn't had any tingling or weird smells since she started the meds, however, so that probably means something.

Thanks for all of the advice and information!

Tegretol is actually also used to treat Bi-Polar Disorder.

 

[RobinN]

http://www.coping-with-epilepsy.com/forums/f22/suicide-risk-11-epilepsy-drugs-2416/

 

[Dain Bramage]

Tegretol is indeed a powerful medication with many potential side effects. However, it does have a positive side, at least in my case. I was on it for 14 years (800mg daily) and it did a great job of controlling my seizures, all without any noticeable side effects. The only reason I switched to another med is that I built up a tolerance and started having break-through seizures.
My advice:
1. Get a second opinion from a doctor that isn't affiliated with your first one in any way.
2. Educate yourselves as much as possible.

 

[Bernard]

Hi Raskolnikov, welcome to the forum. :hello:

My wife was having symptoms of tingling/numbness in her arms and face, and occasional smell hallucinations.

tingling/numbness -> could be a sign of neuropathy, strokes/TIAs or seizures

smell halucinations -> very likely these are simple partial seizures (aka auras). The burnt toast smell in particular seems to be very common.

The tegretol seems evil.

Most AEDs have "evil" side effects. They affect everyone differently though - everyone has different tolerances. There is a quality of life equation that must be balanced between seizure control and treatment side effects.

It can take a few days or weeks for the body to adjust or adapt to the drug and she may find that the side effects diminish in time. If not, she might talk to the neuro about trying something different.

Is this sort of thing common? Diagnosing seizures from an EEG and occasional smell hallucinations (burnt toast)?

Depends upon what was found on the EEG. Many times, people with epilepsy who experience seizures daily are unable to get one recorded while having an EEG - they can't deny the occurance of seizures, only confirm epileptiform brain activity.

If her EEG showed strong epileptiform activity, I'd strongly suspect she was having simple partial seizures at the minimum (smell halucinations) and potentially more (numbness).

If so, is it normal not to be able to even talk to a neurologist for 5 weeks and be given your diagnosis by a nurse over the phone?

I guess that depends upon the doctor.

Is it normal to be prescribed AEDs without knowingly having had a seizure that has impaired her life in any way?

If she is having seizure activity and she does not get it under control, she runs the risk of her seizures getting worse. There is a term called kindling which describes the process whereby the pathways in the brain that trigger seizures get stronger over time and eventually lead to bigger or more frequent seizures. In effect, the brain trains itself (or learns) how to seize. The brain can be trained (via neurobehavioral therapy or EEG neurofeedback) to avoid seizures too.

Mostly at this point, we are trying to figure out if our doctor is a quack, whether we are being badly treated, and whether we should seek a second opinion now or wait until after we see the doctor in three weeks.

When you see the neuro, you should make sure you understand what results were found on the EEG. It sounds to me like there is a very high probability that your wife is having seizures and the doc is taking an appropriate action in trying to get them under control. It can take a bit of trial and error to find the right treatment (whether drug or otherwise) to balance that quality of life equation. We're here for you both if you need us.