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The Travails of a Tiny, Ill Hippo
 
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Below are the 19 most recent journal entries recorded in Shadesong's Sick Hippocampus' LiveJournal:

Tuesday, March 1st, 2005
5:33 pm
Topamax
Starting March 1

Trileptal: 450mgAM/600mgPM
Topamax: 0mgAM/25mgPM

Gentlemen, start your engines...
Sunday, November 28th, 2004
2:27 pm
Thursday, August 5th, 2004
10:42 am
Medication update
AM: 150mg of Lamictal
PM: 150mg of Lamictal, 250mg of Keppra. Also 1mg of folic acid.

I'll be working my way up to 1,000mg of Keppra per day. Currently working down from 350mg of Lamictal. Will be doing this simultaneously.
Friday, July 23rd, 2004
8:32 am
Thursday, July 22nd, 2004
10:42 am
10:10 am
Ha!
The Epilepsy Foundation has a quality-of-life test

Part 1, re: side effects. If you score 15 or higher on your detrimental side effects, "You may be living with too many negative effects."

I scored 45.

Fatigue, weight loss, difficulty concentration, memory changes, unsteadiness, dizziness, etc.

Yeah.

Part 2, preventing me from doing stuff. 15 and higher: "Check with your doctor/health care team. Your treatment, your seizures, or your personal situation, may be making it difficult for you to live as actively as you would like. Print this out and show it to your health care team. Ask for help in these areas, for someone to talk to or to help you cope better with these concerns."

I scored 30.

Difficult for me to: Get where I want to go when I want to go, go shopping, socialize with friends, achieve my goals, live independently.

*prints out report to take to doctor*

It's so fun to be me, yes?

I've packed Seized, by Eve LaPlante, to read at lunches. I need to get as much info as possible before talking to my doctor.

So I'm gonna be seizure-centric for a bit.
9:52 am
Seizure Response Dogs
MINIMUM STANDARDS OF TRAINING SERVICE DOGS THAT SEIZURE RESPOND/ALERT

A Seizure Response/Alert dog is a dog trained and placed to work with an individual who has Epilepsy or other seizure disorders. The dog is trained to perform a task or tasks which benefit the recipient by alerting him/her to or by responding appropriately to seizure episodes.

The program must demonstrate knowledge of seizure conditions including but not limited to Epilepsy. The program staff must posses the ability to provide emergency first aid to students during the placement period.

1. A minimum of one hundred twenty (120) hours of training over a period of no less than six (6) months, must take place under the supervision of a program's trainer. During that time at least thirty (30) hours of regularly scheduled training must be devoted to field trips and public exposure.

2. The dog must be able to perform both on and off leash obedience skills with voice and/or hand signals. These commands will include: sit, stay, come, down and heel. Dogs must demonstrate absolute control on and off leash.

3. The dog must show social behavior skills of no aggression, no inappropriate barking, no biting, no snapping/growling, no inappropriate jumping on strangers, no begging and no sniffing of people. Dogs must be unobtrusive and have good household skills.

4. The dog must be trained no less than one "appropriate response skill" i.e.: vocal alert, physical contact alert, activation of an emergency medical alert system, etc.

5. The training time with the student prior to placement must be a minimum of no less than thirteen (13) days. Instruction must include obedience skills, proper behavior and implementation into the home.

6. The training facility must require the recipient to complete a follow-up progress report once a month for the first six months following the placement. Personal contact will be done by qualified staff or program volunteer within eighteen (18) months of graduation and annually thereafter.

7. Identification of the Seizure Response/Alert Dog will be accomplished with a laminated ID card with a photo of the dog and partner and names of both recipient and dog. In public. In the public the dog must wear a harness, backpack or slicker with a logo that is clear and easy to read and identifiable as a service dog.

8. At the onset of training, every dog will be spayed or neutered and will have a thorough medical evaluation to determine that the dogs does not have any physical problems that would cause difficulty for a working dog.

9. It is the program's duty to educate the client to his/her responsibility to inform, in advance, their support system of the proper response to the seizure alert/response dog.

http://www.adionline.org/servstand.html
Requested application from: http://www.pawswithacause.org/history.asp

This site is here to remind me. I often talk myself out of the fact that I actually do have a disability... http://www.deltasociety.org/nsdc/sdbasic.htm

A trainer in Alpharetta:
Canine Assistants
Contact: Kent Bruner
3160 Francis Rd.
Alpharetta, GA 30201
Tele: (770) 664-7178
FAX: (770) 664-6918
From here: http://www.inch.com/~dogs/service.html

The ADA page. http://www.usdoj.gov/crt/ada/adahom1.htm

I'll shut up for now.
Wednesday, July 21st, 2004
1:50 pm
Tuesday, April 6th, 2004
10:47 am
Seized, by Eve LaPlante - Drugs!
p75: The numerous antipsychotic drugs, such as Mellaril and Thorazine, and antidepressants that the doctors gave her in the 1960s had no beneficial effect, and actually intensified her seizures. This is a common reaction of TLE patients to these drugs, and it is now considered a clue that a patient has epilepsy rather than a psychiatric disease.

Ha! Ha, I say!

A great deal of my LJ Drama comes from morons who insist that Prozac is a miracle cure, and get pissy when I say that antidepressants don't work for me. They are fucking morons. This is proof.

I was on meds from age 9 to age 16. They did awful things to me. In a post a while back, I said: "on this shit, I w as unable to follow a train of thought. Unable to complete a sentence. For *months*. I am never going back to that. NEVER. I'd rather blow my brains out than be that mindless, shambling sack of meat again."

The inability to follow a train of thought was part of how I explained my seizures to my neurologist.

The other part, which I didn't go into in that post... this was intensified when I was on the antipsychotics. Just as in my seizures of last year... I was stuck in my head, FEELING my brain fail to connect, FEELING the gears slipping. And unable to communicate it to anyone. Which I've cited as the reason I'll never take happy pills again - they trap me screaming in my head, and I know that things are Horribly Wrong, but I'm utterly incapable of *communicating* that.

And this is one of the primary reasons that yendi and I think thyat I've been epileptic for most of my life. My experiences on meds are completely consistent with the standard epileptic reaction to same. Those were seizures. I just didn't know they were until now, until I read that and connected the dots and remembered how it felt to be on meds and compared it to my seizures now...

Okay. Done typing here for today; aren't you happy? :)
10:43 am
Seizures, by Eve LaPlante - Mental
p18: This time the woman reported a deja vu experience - "a tiny flash of familiarity" - and also "the feeling that I knew everything that was going to happen in the near future."
p51: or an unpleasant light-headedness that, typical of TLE, is difficult for him to put into words.
p75: She experienced agonizing waves of dread, similar to Jill's panic attacks, in which she felt certain that "something very bad is going to happen to me."


All of the above - and frequently.

p68: During a conversation, Jill may fall silent for twenty seconds, return to normal consciousness, then say, vaguely, "I'm sorry, did you ask me something?"...

This actually happens to me fairly often, though I'm too embarrassed to say anything - I'd been ascribing it to a general difficulty paying attention, but if it's a small simple partial seizure... well, I'd feel much better about it, as I've always felt guilty for missing things seemingly due to not paying attention!
10:37 am
Seized, by Eve LaPlante - Physical
p.50, physical causes: the boy's temperature rose dramatically... encephalitis...

Potential cause. I don't know how my lesion happened... my parents don't remember anything like this, but hey, they were inattentive. Maybe my hospitalization for pneumonia when I was 4? I don't know how high my fever got.

p51: or an unpleasant light-headedness that, typical of TLE, is difficult for him to put into words.

I thought this was a side effect of the Lamictal!

p62: intermittent gastrointestinal pain, intense emotions, spatial disorientation, and forgetfulness. p64: ovarian cysts...

Oh. Dude.

See, this is why I think I may have had it for some time. When I was 16, I had ovarian cysts that you could feel from the outside, when you palpated my stomach. Granted, I'm skinny, but *dude*. And I had serious GI pain for *years*; I underwent several barium enemas and upper GIs trying to figure out what the hell was wrong with me, and they never found a cause.

p68: Stationary objects, such as a chair or a table, sometimes appear to shrink or to expand, common seizure states that are known, respectively, as micropsia and macropsia.

Aaaand this happened to me all the time as a kid. All the time.

I never thought that these things could be related. Such a disparate group of symptoms!
10:29 am
Seized, by Eve LaPlante - Geschwind 's Syndrome
p34: Geschwind syndrome: hypergraphia, hyperreligiousity, hypersociability, aggression, and altered sexuality.

The "altered sexuality part" is most often a lack of interest in sex, but it can also be an excessive interest in sex. :)

p32: On the one hand, his TLE patients were unusually clingy and dependent, friendly to a fault. They prolonged interactions and conversations beyond the norm...Gastaut...called the trait "hypersociability"...

I will admit - this is me. Believe it or not, I don't make a practice of lying to myself!

p35: Jackson had noted that TLE patients often had a distinct personality, being quick to anger and unusually interested in religion.

Me, quick to anger? Nooo...

I used to want to be a rabbi... now, I'm fairly spiritual on my chosen path.

p67: the psychosis seen with TLE is not true schizophrenia but rather "schizophreniform", or schizophreniclike, because the patient, unlike a schizophrenic, maintains "strong affect" and "a high level of interpersonal functioning".

Well, that's pretty fucking scary. At least it's exclusively short-term.


p79: another trait of Gerschwind's syndrome...Gloria's extreme compassion toward those in trouble...

That one I can be pleased with...

p81: ...unlike most TLE patients in that "she doesn't take a moment to think of the consequences before she yields to strong impulses...her extreme personality is thus the result of overstiulation of her temporolimbic structures and of reduced inhibition in her frontal lobes. Not only is her emotional volume turned up, but also the mechanism that screens her emotions is out of order. The result is Geschwind's syndrome enhanced.

Heh. Do I even need to discuss this one? I thought not.
10:17 am
"Seized", by Eve LaPlante - Writing
I have rather a lot to say. Let's begin!

HypergraphiaCollapse )

I simply Do Not Feel Right when I'm not *writing* enough. I get tense, edgy. I find it interesting that this is one of the primary indicators of Geschwind's Syndrome, which I'll examine more in a separate post.

I also find it interesting that most of this book appears to ascribe epilepsy to scarring of the brain tissue, to the exclusion of other causes. I was told that I have a lesion on my hippocampus; I'm not sure how it got there, though! :)


Depth of emotion in writingCollapse )

I hope I'm not egotistical in seeing this applying to my own life as well - the way I disappear into my characters... "the desire to record experiences "at great length and in highly charged language"."... LJ much? *laugh* LJ is very much a part of my hypergraphia! I think that's pretty clear.

Off to another topic. I'll probably add to this later. Comments welcome, of course...
Monday, December 15th, 2003
11:15 am
ganked from comradecharlie
Report: "People With Epilepsy Should Be Screened For Depression"

People with epilepsy who also have depression percieve their seizures to be more severe and disruptive than people with similar seizures who do not have depression, according to research presented to the annual meeting of the American Neurological Association.

Principal investigator Joyce Cramer told the meeting that the research team were seeking to determine the relationship between depressive symptoms and seizure severity, following an earlier study showing that people with epilepsy were more likely to have mood disorders than the general population.

In a study of 683 adults with epilepsy, 21.4 per cent were categorised as having severe depression, 9.5 per cent having mild to moderate depression and 57.2 per cent of those questioned had no depression.

Patients' reports of seizure severity were, the researcher said, significantly related to the severity of depression. Their reported seizure severity was rated on a Seizure Severity Scale (SSQ). People with severe depression had an average SSQ score of 4.99, those with mild to moderate depression had an average SSQ score of 4.54 and those with no depression had an average SSQ score of 4.19.

The researchers also found that people with severe depression found their ability to recover from seizures worse than people who did not have depression.

Ms Cramer told the meeting:

"The pervasive influence of depressive symptoms on reports of seizure activity suggests that people with epilepsy should be screened for depression, and treated as needed."

Epilepsy Action information: Epilepsy and Depression
Friday, November 21st, 2003
8:44 am
Wednesday, November 5th, 2003
8:57 am
Update
I went from 100mg/day to 150mg/day yesterday. This is a bigger change than it sounds; I was taking 50 in the morning and 50 at night, but now I'm taking 50 in the morning and 100 at night. Doubling the nighttime dose...

Today: nausea and exhaustion. The latter could just as well be due to me staying up til 1 AM a lot recently; I need to go to bed right after Angel tonight. Just listing it here because it *is* a documented Lamictal side effect. The nausea is 100% a Lamictal thing, I think. Also had non-menstrual stomach cramps this morning, may or may not be related.

Also feeling all-around spacey. Which, again, may be due to Lamictal and may be due to being overtired. I need to go to bed early the rest of this week so I'll know for sure.

Unrelated: Anyone want to make me more hippo icons? This is a free account, so I only get 3, but I only have one at the moment.

Current Mood: oogie
Monday, November 3rd, 2003
4:01 pm
Wednesday, October 29th, 2003
6:49 pm
Lamictal
Started Lamictal on October 7th, with 50 mg/day. Currently on 100 mg/day. Destination: 400 mg/day.

-------
Generic name: Lamotrigine

Use:Seizure disorders, including simple and complex partial seizures; Lennox-Gastaut syndrome in children; bipolar disorders.

Action: Lamictal binds to the hormone melatonin. It stabilizes electrical currents within the brain and and blocks the release of seizure-stimulating neurotransmitters. Lamictal is believed to have greater neuroprotective abilities than some other anti-epileptic drugs.

Side Effects: Lamictal can cause headache, dizziness, nausea, a general flu-like feeling, and increased light sensitivity. If you develop a rash, call your doctor immediately, as it may be a warning of a serious, even life-threatening, side effect. The likelihood of this problem is especially high in children. Lamictal may make seizures worse in some people.

Known interaction hazards: Lamictal interacts with Depakote/Depakene, Tegretol, and Dilantin - your doctor will have to monitor doses carefully. Antifolate drugs increase its action. Solfoton and Mysoline may lessen its effects. Lamictal can cause irregular bleeding when taken with oral contraceptives, and it can also cause oral contraceptive failure, leading to unplanned pregnancy. Switching to an oral contraceptive with greater estrogen content may prevent this problem.

Tips: Lamictal is not normally recommended for use by children, except in cases of Lennox-Gastout syndrome, although some neurologists have found it useful for other forms of pedatric epilepsy. If you have heart, kidney, or liver diease, use this drug only under careful supervision. Lamictal sometimes has an antidepressant effect when used with another AED or lithium. It is usually used in addition to other medication rather than as monotherapy.
--Mitzi Waltz, Partial Seizure Disorders
-------

http://www.lamictal.com
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a695007.html
http://www.healthsquare.com/newrx/lam1217.htm
8:35 am
Epilepsy as Disability
Personally, I'm delighted to be covered under the ADA (Americans with Disabilities Act). Not only do all of my co-pays and prescription drug charges become tax writeoffs - and the meds alone will be $360 per year - but I'm protected from discrimination, and....

I could get a service dog.

SEIZURE ALERT / SEIZURE RESPONSE - also known as MEDICAL ALERT - alerts to oncoming seizures and is trained to respond to seizures such as get help or stay with the person.

See, yendi, I did remember that correctly. A seizure-alert dog can sense my auras and keep me safe. Which, considering that I'm not mentally there when I have my seizures and could do such things as walk out into traffic, could be immensely helpful.

Current Mood: wanna puppy!
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