[Research] Oh no -- here comes the sun

[Rae1889]

lol no no, Hell is staying locked up.
Like I say, when Hell freezes over, Canadians will play hockey on it. So there are no worries there.

But yay for getting up early again!
Now I think the next step would be to get him out side for a walk in the sun. He might be vitamin D dificient due to lack of sunlight. so you may want to look into that.

 

[occb]

Sun's a no go, we'll have to get supplements instead. The sun makes his brain go nuts -- to the point that he wears sunglasses indoors. That's why he typically starts feeling disgusting around 11 am. Weird, eh? He's always had that, since childhood. Tried to tell doctors about this, and they say he's just a nutter, or brush it off as nothing.

When he was first on lamotrigine, it helped him with this issue alot, but now it's back. Maybe it'll start settling if we get him on a higher lamotrigine dose, or a lower Effexor dose?

 

[Rae1889]

maybe both.
I dug this up and maybe partner can go through it and see if anything is familiar to him.

Causes
“Photophobia or light sensitivity is a common eye complaint. It can result from several different conditions and in most cases is easily treatable.”

Eye Care Specialists: When the Light Hurts Your Eyes

Stimulants, Medication, Adrenaline

· “Certain medications and illegal drugs can cause photophobia by simply dilating the pupil and allowing an excessive amount of light to enter the eye.

· Frequent use of cocaine [other stimulants, such as adrenaline, can cause the pupils to dilate] can cause a chronic dilation of the pupil.

· This side effect may lead to the inappropriate use of sunglasses.”

· The Brain: Adrenaline

· Vision: Nutritional Optometry: Functional Photophobia

“The most common cause of photophobia is inflammation of the anterior region of the eye, which includes the colored iris.

· The muscular iris controls pupil size and adjusts the amount of light entering the eye.

· Just as a sore back hurts when you bend it, an inflamed iris muscle painfully constricts when light hits the eye.

· Even if the injured eye is patched, the light sensitivity continues because light hitting the uninjured eye causes both pupils to constrict.”

“Another common cause of photophobia is a cataract. When the natural clear lens of the eye becomes cloudy, a cataract has formed.

· Cataracts tend to scatter light, similar to a frosted window in wintertime.

· The disrupted image causes discomfort which is perceived as pain. It is not fully understood why this condition results in discomfort. Possibly, the scattered light may cause a brisk, spastic constriction of the pupil which may contribute to the feeling of discomfort. Most likely the feeling is subjective and develops at a higher, emotional level.

· Fortunately, symptomatic cataracts can be removed with a very high success rate, eliminating the photophobia.”

· The Brain: Serotonin: Serotonin Levels: General Effects

“Occasionally, a patient will complain of light sensitivity, for which no logical explanation can be found. Most of these individuals tend to be fair skinned, with blue eyes. The treatment is the judicious use of tinted glasses to relieve their symptoms.”

“People with lighter-colored eyes, cataracts, and those who suffer from migraine headaches are more likely to notice sensitivity to light and glare.”

“Often, photophobia is a symptom of another underlying problem, such as a

· corneal abrasion,

· uveitis, or

· A central nervous system disorder such as meningitis.”

“Light sensitivity may also be associated with

· retinal detachment,

· Contact lens irritations,

· Sunburn and

· refractive surgery.”

“Photophobia often accompanies

· Albinism,

· Total color deficiency (seeing only in shades of gray),

· Botulism,

· Rabies,

· Mercury poisoning,

· conjunctivitis,

· keratitis and

· iritis.”

“Some medications may cause light sensitivity as a side effect, including

· belladonna,

· furosemide,

· quinine,

· tetracycline and

· doxycycline.”

 

[Rae1889]

I got this from This Site

It does have some more information as to why people can have such icky feelings with light, and possible ways to treat it.

 

[occb]

Thanks for the info. I remember reading it a long time ago, but maybe it's time to re-visit this.

 

[Rae1889]

lol sorry it was so long, but I thought it may help.

 

[occb]

Friday, March 19, 2010

Lamotrigine 200 mg
Effexor XR 150 mg
Xanax --
taken 9 am

Woke up in agony from the waist down today, and spent most of the day in bed. Doesn't recall any incidences during the day, but tonight we went out to dinner with his brother and new girlfriend in a buddhist restaurant -- the place was a nightmare of bold patterns, and he spaced out one moment after the next, losing awareness of what was being said, answering inappropriately (she asked him he ever lived in Asia, he responded I don't remember, I don't know), felt nauseous, dizzy. It started the moment we walked in, and ended the moment we left. I could see he was struggling to keep focussed, but it wasn't working. What an introduction to the new woman in his brother's life.

Add to that his mother is in complete denial and told him "it's just mind over matter", exercise and your back injury will go away, and, judging by some of the things his brother said tonight, he's wiped our entire conversation from a week ago out of his mind.

I may need to send the parents a big email politely telling them to [censored] off. I don't know if partner's going to go for it though.

The sun is going down now, so I sent him to the store for some fresh air and exercise. He needs the movement despite the pain.

Experienced some abdominal spasms while awake, then sudden abdominal pain lasting under 30s. Later had several lengthier space-outs (8-10 s) I counted four in a half hour. Lost consciousness as he didn't respond to my questions during or after the spells.

Late at night/early in the morning, he had severeal smaller abdominal and legs spasms which were preceded by short, louder moans than usual. I haven't woken up to activity in the middle of the night, but I have woken up the past couple of nights to his body being graveyard cold. Absolutely freezing.

 

[occb]

Saturday, March 20, 2010

Lamotrigine -- mg
Effexor XR 150 mg
Xanax --
taken 9 am

He ran out of meds, and forgot to tell me. At least he was able to take the Effexor because the reduced dose left him with extra pills, he had to take lamotrigine later after we filled the scrip.

I got up early to babysit, but I didn't wake him, because he had that ashen, slack look about him. I knew he was going to be sick today. When I spoke to him later, he woke up with intense nausea, dizziness and confusion, as well as all-over body pain. The nausea, dizziness and confusion disappeared within a few minutes, but the all-over body pain has stayed so far.

No noticeable episodes until 8 pm, after waking up from a nap he experienced an episode of bad smell.

Sleep was disrupted at 3 am, when he woke up with severe back and leg pain. Came back to sleep at 7 am. When I woke up at 9, he was deeply asleep, doing small stomping motions with his legs (heel first, alternating legs. Maybe this is what "bicycling motion" looks like?) Episodes would last about 3 seconds, repeating every 10 seconds, until I woke him up.

 

[occb]

Sunday, March 21, 2010

Lamotrigine 200mg
Effexor XR 150 mg
Xanax --
taken 9 am

Woke up again at 9 am with severe back pain. No episodes in the morning.

Sudden onset headache at 1 pm, accompanied by sporadic abdominal and leg jerks. Has continued until approximately 3 pm, followed by sudden onset anger and all-over body pain. This is really getting repetitive and annoying.

Had an episode and staring followed by squiggling colours at 6:30.

Managed to convince him to start with B6 & B12 (with folic acid) supplements. I also bought magnesium supplements, but he wants to see how the B supplement sits with him before starting the magnesium. It's a start. I'm taking them too, to help with PMS and so he doesn't feel like it's just him. I hope this works... although, I can never keep the types of magnesium and absorbability straight, so chances are, I grabbed the less absorbable ones again...

 

[seizingbeauty]

You get a giant flying tackle bear hug and give Scott a nice gentle hug! I can't begin to imagine what its like for my guy some days but your thread gives me a better perspective. Thanks for that!

 

[Rae1889]

sounds like a crappy weekend. what a bummer.

Hopefully things started off better today.

(((((HUGS)))

 

[Zoofemme]

All I can say occb is you are a rock and I would give you flowers if I could. An excellent, caring partner is the most that anyone could ever want...kudos

 

[occb]

Hugs sent and recieved Seizingbeauty (the hug message made him smile). I'm glad my diary gives you a new perspective. It's definitely changed mine. I never knew just how much he experienced and suffered through in a day.

Believe it or not Rae -- this was a fairly benign weekend. The moods were somewhat manageable. I just hope this diary convinces the docs.

We have an appointment with lazydoc this morning as a last ditch effort for him to both medicate for his pain, and send him off to the Epilepsy clinic for diagnosis. If that fails, my SIL is seeing the other doctor this week and will set up an appointment for partner when she's there.

Partner also put two-and-two together regarding the afternoon moods. This is the time of day when he's quit nearly all of his jobs, and he began to get upset that this issue has affected his life so dramatically, that all this time it was something else driving him to snap.

Monday, March 22, 2010

Lamotrigine 200 mg
Effexor XR 150 mg
Xanax --
taken 10:30 am

Most of sleep seemed good last night, although I woke up to some pelvic thrusting at one point. This morning just, before wake-up, he would make a sour face and his head would jerk in a nod two or three times, while his left arm and hand and lower abdomen clenched.

Woke up with severe pain from the waist down again.

Side note -- when I woke up I was cuddled against him and his body from the waist down felthot, with a spot right in the spot where his back injury hotter than the reat. Maybe he's fighting infection or something? The heat faded by the time he woke up.

He had sudden abdominal pain, then some irritability at the doctor's office (lighting maybe, or just annoying doc?) and another bout of irritability when we came home. Otherwise, the day was cloudy and, in his own words "one of the best days I've had in a while." He had one severe episode of epigastric rising at 2:30, but otherwise he was focused, had energy and no other episodes during the day. No severe mood int he afternoon, just a comparatively mild tiredness.

Had another milder episode of epigastric rising at 9 pm, followed by a moment of cold sweats and shakiness, but otherwise fine.

Almost forgot -- when we went to bed, he had sudden pain in his stomach area. I out my hand on his lower abdomen and asked if the pain was there, and he was surprised and said yes. It was the same area which was spasming that morning.

 

[Nakamova]

"Pelvic Thrust" made me think of "Let's Do the Time Warp Again" (from the Rocky Horror Picture Show).

Want to make clear that I'm not making fun of your partner's suffering! I hope lazydoc comes through with painmeds. Back pain colors everything else black.

 

[occb]

You made me giggle with that reference Nak -- Best. Movie. EVAR!
Certainly no offense meant or taken. Cross your fingers everybody. I doubt lazydoc will come through, but we'll still try.


Aw thanks Zoofemme. Really, he's my rock, so he makes it easier on me to do this.

 

[Rae1889]

I'm crossing my fingers for you Occb, that lazydoc voluntarily passes you guys over to a doctor/specialist that cares. You dont want him to medicate and then do nothing. so here's to a new and better doctor!!

 

[occb]

No such luck being passed on to another doc, but some success today (my presence seems to help the cause).

Regarding pain, lazydoc mentioned gabapentin again. We were all absolutely not! Then he said something about lamictal being helpful for nerve pain -- news to me -- so I jumped all over that and asked if we can up his dose. He's increasing it by 100mg. Yay! I questioned him about bumping it up slowly, and he's all "naaah, you don't have to worry about that" but I don't know. What do you guys think? Slower raising of dose, or 100mg is an okay jump? (he jumped from 100 to 200 without incident, but I still don't like this).

Anyway, WOOT!WOOT! to more lamotrigine whatever the reason!

We've also gotten lazydoc to be more flexible on prescribing xanax -- partner may be able to fill more than once a month by getting the pharmacy to call lazydoc for approval. We'll see if he upholds that end of the bargain. Partner is not happy -- he hoped for daily xanax, and was a little unreasonable about not getting it (I understand why he wants it, it's a tested and true med for him). I had to step-by-step explain why this may be just as useful re: pain and episodes, and he cooled down. This mood may be due to the sudden abdominal pain and slight confusion he had in the doctor's office, although when we left the office, he was happy, by the time we got home 5 minutes later, he was unhappy.

So... not really prescribed pain meds, but if the pain is in part due to seizures (which the all-over pain almost certainly is), we may be doing okay with the increased lamotrigine.

 

[Rae1889]

If your worried about going too fast, then take it slow. It took me up to 175mg twice a day to get the allergic reaction, and I did it slow.

Did he prescribe this to be taken all at the same time?

Partner is what I was on for the most extended part of the Lamictal stay.

I did 150mg twice a day for a total of 300mg. So is he taking it twice or once, because I believe I was told to make sure I take it every 12 hours, because the serum levels drop really quick and I could tell after an hour of missing it. That might be same for partner. By the afternoon/ evening, his serum levels are dropping and he notices the changes.

 

[occb]

He's taking 200 mg once a day right now. The doc didn't prescribe any dosing schedule, so it's really up to us to decide.

You may have a point about the serum levels, since lately he's gotten small spells at around 8 pm. As for the afternoon spells... they've been there since well before the lamotrigine, so that may not be technically due to low serum levels, although, who really knows.

We discussed adding this new dose to his afternoon/evening schedule, and maybe we can split it up so he does 150 in the morning and 150 in the evening. I remember we had tried the 200 in the evening and it messed him up a little, making it harder for him to get and stay asleep, so we'll have to test this out.

Maybe with the increase, altogether with the vitamin B6 B12 and folic acid, and later the magnesium, we can get this a little better under control. I want to change our diet too, but I'm just too overhwlemed right now. Everything just feels like a big struggle right now, and it gets to be more of a struggle when he's resistant, so it's something I'll have to address at a later date, hopefully when he can be a little more lenient (ie, not in the middle of moody times).

 

[Nakamova]

I say go slow on the Lamictal upgrade. When I was tapering on, my neuro had me take 4 months to get up to 250mg! I was razoring those tiny pills in half...