35 F, suffering from headaches, neuro stuff...seizures? Neuro appt. 10 Dec

[Alesis]

Hello:

Thank you in advance for reading my long post. It was suggested that I post here for insight based on some symptoms I have been having. I am a 35 year young, recently married lady, of average weight and OK general health.

For as long as I can remember, I have been experiencing what I call "space-outs", where I forget what I am doing, stare blankly "into space" and need to regroup. Sometimes I catch myself fluttering my eyelashes, other times I need to tap the desk repeatedly to "snap out of it". It seems to need to run its course, lasts no longer than 30 seconds and my attempts to "snap out" never work. I got a yearbook "award" in 5th grade for "most spaced out" and was told by a former boss in 2003 on a progress report that I "stand there staring off into space".

The other phenomena that I experience (which started with the recent, full-blown, re-flare of my left-sided headaches) is that I make stupid mistakes and don't realize it until after I've made them. Sometimes I don't even have consciousness of the event having taken place.

For example, I went to the eye doctor on Saturday to rule out my eyes as the cause of my headaches. When I was asked to read off an eye chart, I must have flip-flopped the two letters on the second row, as the doctor said "read left to right, not right to left." I didn't even comprehend what the doctor said at first and needed him and my husband to repeat what he said. Not only did I need to "regroup", I had no consciousness of having flip-flopped the letters.

Today at work, I left out an important step of a routine task that I perform every day. I have been working at this job for a year and doing this task repeatedly pretty much since I started. In fact, this part of the task is the one I learned and practiced when I first started the job! I NEVER leave out this step. It is so out of character for me. Thankfully it was no big deal and I was able to correct the error.

The headaches originally started in Fall 2005. They come and go and are always on the left side. I don't know if this is related or not: I fell on the ice four times in a two week period in Feb 2005. I didn't hit my head, but it was bad enough a fall to warrant physical therapy. In fact, the physical therapy made the back pain go away.

For the headaches, I tried everything. Physical therapy (3 different ones), chiropractor (didn't help despite 50 some-odd treatments), muscle relaxer pills, NSAIDS, acetaminophen, massage, trigger point release, etc. I saw a neurologist from 2009-2010, who tried migraine meds and they didn't work (she didn't think I fit the pattern of migraines anyway). Suspecting Idiopathic Intracranial Hypertension, she ordered a spinal tap, in which the pressure was normal. MRI was done and nothing out of the ordinary was found. I stopped going in 2010, when the pain resolved on its own.

Now the headaches are back in full swing and have been for three weeks. They are usually worse in the AM and go away on their own. No medicine has helped. They are also triggered by changes in body position, like going from standing to sitting, or sitting-standing-lying down. Appetite has dwindled and I also get nausea, especially in the AM. My left ear is plugged and I have trouble hearing out of it sometimes. The doctor looked in there and said it looked OK.

I have an appt. with a neurologist on 10 Dec. From people's suggestions, I have been keeping a calendar of my symptoms to give to the doctor. They requested my records from the neuro in Upstate New York (I moved to the Midwestern part of the US a year ago) via postal mail. However, I am hoping and praying that once the letter is received in NY, that they fax or electronically send the records, in case I need to/am suggested to get in earlier.

I am scared about what is going on and it is scaring my husband. He tells me he is afraid to leave me alone in case I fall or something while he is out. I dropped two large soda pops in one day, despite trying my best to be careful. This was at onset of the headaches and the clumsiness. I also have trouble keeping my balance, especially while walking and getting up from a seated position. I want to communicate and talk things over with my hubby, however I do not want to scare him, either.

Anyway, here are my questions:

• Are epilepsy and headaches related? In other words, do people with epilepsy commonly get headaches as part of their condition?
• Can absence/petit mal seizures go undetected by doctors (and epilepsy in general), despite having seen many docs as a child and adult? (Including psychiatrists and neurologists)
• Can people still get seizures while on Topamax? I take it for biploar disorder and have for years. I read that it only treats certain types of seizures...I will have to dig and see which ones it treats.
• Should I call and see if I can get in to the neurologist sooner than 10 Dec?
• How do they test for epilepsy in adults? I've read mixed things on the net.

Ruled out:

Eyes - just saw eye doctor
Meds - called pharmacist two days ago. All my meds are filled at same store.

Last but not least: My surgery history:

2008: L total parotidectomy, secondary to 5.5 cm benign tumor. The surgeon didn't think it was the cause of my headaches and even repeated the CT scan a year later to make sure.
2011: roux-n-y gastric bypass
2012: hysterectomy (lost everything except right ovary).

I appreciate any and all insight you can give me.

Thank you for reading.

A

[Earth Mother 2 Angels]

((((((Alesis))))))

Welcome to Braintalk!

I'm so sorry that you are suffering with so many symptoms.

To answer your questions, based on my experience and reading the experiences of others:

1. Yes, epilepsy and headaches can be related.
2. Yes, I think it's possible for doctors to misdiagnose absence and certain other types of seizures.
3. Topamax is an anti-epileptic drug (AED), however, it can be ineffective, as can all AED's in treating seizures. Effectiveness may be relative to type of seizure or dosage.
4. You might be wise to call the neuro's office, explain what's been going on and ask them if you need to be seen sooner, or to call you if they have a cancellation before Dec. 10.
5. Testing for epilepsy will most likely involve an EEG. Have you had one of those in your medical journey? Electrodes glued to your scalp, a cap placed over your head, and then the machine records your brain waves.

The very first place I look to find the culprit for symptoms is medication side effects. I looked up Topamax on our Drug Info link here, and I copied the potential side effects to paste into this post for your information. See if you recognize your symptoms in this list.

What side effects can this medication cause?
Topiramate may cause other side effects. Tell your doctor if any of these symptoms are severe or do not go away:

numbness, burning, or tingling in the hands or feet

slowed reactions

difficulty concentrating

speech problems, especially difficulty thinking of specific words

memory problems

lack of coordination

confusion

nervousness

aggressive behavior

irritability

mood swings

depression

headache

drowsiness

weakness

excessive movement

uncontrollable shaking of a part of the body

uncontrollable eye movements

extreme thirst

weight loss

constipation

diarrhea

gas

heartburn

change in ability to taste food

swelling of the tongue

overgrowth of the gums

dry mouth

increased saliva

trouble swallowing

nosebleed

teary or dry eyes

back, muscle, or bone pain

missed menstrual periods

excessive menstrual bleeding

skin problems or changes in skin color

dandruff

hair loss

growth of hair in unusual places

ringing in the ears

difficulty falling or staying asleep

swelling of the hands, arms, feet, ankles, or lower legs

difficulty urinating or pain when urinating

Some side effects can be serious. If you experience any of the following symptoms, call your doctor immediately:

blurred vision

double vision

eye pain

worsening of seizures

slow heart rate

pounding or irregular heartbeat

chest pain

trouble breathing

fast, shallow breathing

inability to respond to things around you

excessive tiredness

nausea

vomiting

stomach pain

loss of appetite

intense back or side pain

bloody, cloudy, or foul-smelling urine

constant need to urinate

fever

chills

Topiramate may cause osteoporosis (a condition in which bones can break more easily)
in adults and rickets (abnormal, curved bone growth) in children.

Only registered and activated users can see links., Click Here To Register...

That's a mighty lengthy list! And it appears that some of your symptoms are on it.

If you can establish a weaning process for Topamax, with guidance from your neuro, and possibly introducing another drug, if it is determined that you are having seizures, you might consider doing that to see whether your symptoms fade or vanish.

Because drug side effects seem to be the last thing doctors consider, I always look at them first.

I hope this information is helpful to you. It should be worth asking the neuro about anyway.

Sending healing energy your way ~

Love & Light,

Rose

[Alesis]

Thank you for your insightful reply. Regarding the medications, I called the pharmacist and he said that I have been on the medications too long for them to be the likely cause of my symptoms. And, yes I fill all my meds at the same pharmacy.

As far as nutrition goes, I have been closely monitored for imbalances and have been supplementing to correct some issues. Last week's blood draw came back all normal and I am continuing the supplements to stay healthy under doctor's orders.

I called the neuro office and got on the cancellation list. That was the best they could do. Please pray I get called.

A

[Alesis]

By the way, I realized I missed a question earlier. I was on lunch break, typing from my phone.

No, I have never had an EEG, unless it was part of a sleep study that I had in 2007. I had a bunch of wires hooked up to me then.

Thank you again,

A.

[Earth Mother 2 Angels]

((((((Alesis))))))


Of course, I'm neither a doctor nor a pharmacist. However, based upon my own experience and that of others, I know that medications can cause adverse effects, regardless of the length of time they have been taken.

One of my family members took Topamax for migraines for several years. Gradually, she began to have symptoms similar to yours. She was misdiagnosed with ADHD and given meds to treat that condition, while she remained on Topamax. Finally, she stopped the Topamax, and her symptoms diminished. She dropped the ADHD meds as well.

From the Topamax list of side effects, I counted 14 symptoms, which seem to correlate with your descriptions of your symptoms. I felt that was worth mentioning to you as something to consider, particularly because of my family member's issues with Topamax. Just offered it as part of the "Rule In or Rule Out" process.

That's great news that your blood results are normal. Supplements are important, but nutrition is vital. Calories are energy. We need energy to function properly. We need the naturally occurring vitamins and nutrients from real food to feed our body and brain.

Unfortunately, I know a little bit about malnutrition, so I have learned a bit more about nutrition. My son is fed via Gtube, and he's stuck with a formula containing the most offensive ingredients to his assorted conditions. If he could tolerate real food, he would be much healthier.

With that, I just encourage you to eat a healthy diet of fresh fruits and veggies, avoid processed foods, fatty foods, refined sugar, and aspartame.

I hope your neuro gets a cancellation soon, and that he will be able to identify the cause of your issues and offer an effective remedy.

Love & Light,

Rose

[Alesis]

(((((((Rose)))))))

Thank you again for your insight. I find that in the scientific community that anecdotal/personal experiences are often overlooked and sadly disregarded. They rely too heavily on structured experiments, as well as the resulting facts and figures. Unfortunately, when weaned off the Topamax before (in an attempt to minimize the number of pills I am taking), my bipolar symptoms worsened. It will take a collaborative effort between the neurologist and my psychiatrist to figure out a solution. My psych is very willing to help me; hopefully this neuro will be too. :) I am willing to do what it takes to make the headaches and other symptoms go away.

The Topamax, if I recall correctly, was started in late 2006 or early 2007 (about 1.5 years after the headaches began). The "space-outs" began in 1987-88 or earlier and the making mistakes and not having memory of it began a few weeks ago, (along with the balance issues and unusual amount of dropping things) when the headaches started up. The original onset of the headaches began in Fall 2005. Hmmm...just trying to make sense of it all at 7AM. I'm very analytical, going about life trying to solve things like a mystery. I highly enjoy research and worked in accounting for awhile doing just that...LOVED IT!

I know the feeling of being misdiagnosed as well. It has happened to me many times and it is incredibly frustrating. In fact, when I was suffering from the pain over the summer that led to my needing a hysterectomy, I was told I had everything from a virus, to acid reflux, to a UTI. Went to ER twice; they would not even do any type of scan on me. :( Thankfully I kept an ovary so I can still get my hormones. :-)

Love and light to you, too. :-)

A.

[Porkette]

Hi Alesis,
When I was on topamax the drug messed me up terribly causing me to have more seizures and a loss of appetite. Once I went off the drug my seizures reduced greatly. Rose has given you some great info. She knows what she's
talking about. I also recently saw where there was a FDA recall on the drug topamax this past summer. You might want to look into that also. Here's wishing you well and May God Bless You!

Sue

[Geneo76]

Hi there,
I have what they used to call Petit-mal sezures also. They started after I had a motorcycle accident when I was 16 years old. I still drove for many years until I ran off the road and decided I better turn in the keys before I hurt someone or myself. Anyway, I'm 54 now and have taken just about all the combinations of AEDs that you can think of. With the knowledge of the people here I suggested to my Neuro to try Keppra in conjunction with Tomamax that had been working pretty well for me. So, come Feburuary I will be seizure free for 3 years and driving again for 2 after a 20 year layoff!! So keep your chin up and hopefully you will find something what will work for you.
Gene

[Travis from MN]

I missed the 2 inches of white stuff that fell at home! Sorry, I noticed you were in the midwest, HAD to say it. As for your query..

•Long time ago I'd have a headache usually following a seizure; sometimes it would start before the seizure as a warning.
•As others have answered, yes there can be misdiagnosis. After a handful of Dr's I highly suggest locating an epileptologist. I have had great luck with them.
•Topa worked pretty well for me; until I had kidney stones. At one point it had knocked them to one every 3 months. It also erased my appetite. Usually it is an add on medication.
•Best way to detect epilepsy is using the EEG. It all depends on where you are (for the clinic). Some will install the wires and will send you home. They may have you plug the hip box in to the phone once a day to transmit them the data it has collected. More often they will have you come in for a short term EEG (1 hr) and if they see the need later have you come in for an in hospital EEG (anywhere between 3-10 days) with video monitoring. But, there really isn't a "test" for epilepsy as there are for other genetic conditions. Sometimes an EEG will come back inconclusive.

--Travis

[Alesis]

Thank you everybody for your help! I am certainly keeping an open mind about it all. Last night, I had one of the worst attacks of my symptoms I ever had. In fact, I had two attacks in one day. I thought about going to the ER, my headaches and nausea were so bad. However, it did wear off. (Plus I am hesitant to vist the ER that takes my insurance, because they blew me off when I was in agony from the mass that led to my needing a hyster last summer. No scan, no nothing.) I took my meds and went to bed.

If this continues to get worse, I am going to beg and plead with the neurologist's office to get me in sooner. Meanwhile, I will look up an epileptologist.

As a side note, you may want to check out the drawing I posted in the Art forum. Something peculiar happened last night. I started off drawing the top panel in ordinary, day lighting and then drew the lower panel in reversed contrast without even realizing it until I stepped away and came back to it a few minutes afterward.

A.