I Broke Down At Christmas Dinner..

[Kate]

First of all, with the Keppra, Topamax, and Valium, I pretty much have no feelings, and this Christmas hasn't felt much like Christmas. I'm kind of sad, because we are leaving on our cruise so soon.. and I should be excited, yet, the only emotions I have towards it are a bit of fear.

The point of this post..

I have been having so much trouble sleeping. They have tried me on literally everything. The 20 mg a night of Ambien didn't work, the Ambien CR didn't work, and now, the most recent medicine, the Halcion, is not working. I take .25 mg of Halcion at night, and I'm lucky to get four hours of sleep. And I mean lucky.. as for last night, I think I maybe had two and a half hours.

So, Christmas Eve, it didn't come as a shock when I had a seizure. It was actually the smallest one I have ever had, and the first one I have had that didn't last long. I had finally fell asleep for the first time in quite some time, and I woke up and had a small one. I must have fallen asleep right after it, and than woke up later.

The only reason I really knew I had one was because I woke up an hour after laying down with the type of headache I always get after having a seizure.. My neurologist always has me go to the ER after I have a seizure, no matter how long they last, because I am new to them.. but my doctor recently gave me morphine and extra valium, which is what they end up giving me in the hospital, so I was able to stay home.

Anyway, I am the youngest (19) in our household.. so we decided to open presents Christmas Eve after I woke up since it was about 9 PM, that way we could sleep in Christmas morning before we head to our Grandparents for Christmas dinner.

Well.. I was still in major pain Christmas morning, so my mother gave me one more morphine. My doctor told me I am allowed to take two morphine pills (spread apart of course) after my seizures to help me deal with the pain.

I guess it was the morphine making me emotional, or just the fact that my seizures aren't under control, or the lack of sleep that's driving me nuts, or that we are leaving to go on a cruise in about four hours and I feel so stressed and so scared sometihng is going to happen... but I just started bawling in the middle of Christmas dinner!

I felt really silly after. My family understood. I went back to one of the den's and took a nap, and my headache was finally gone when I woke up.

Today I called my neurologist and told her about it, and she said to call my sleep doctor to have them change or up my medication before we leave on our cruise. (They can call in a prescription before we leave town - or possibly just up the sleeping medicine I'm taking.)

I'm at my wits end. I HAVE to get on a better sleeping schedule. This is just ridiculous. I'm on Valium three times a day, so there is no way it is anxiety causing the insomnia. I have pain medicine, so it's not pain keeping me up..

I have to wait 10 more minutes before the sleep doctor is in, and than I'll call and hopefully they can figure things out.

Please pray for me everyone, we drive to Alabama tonight and depart from Mobile tomorrow. Wish my family and I luck that we have safe and healthy travels. I'm sure our hotel tonight will have wireless internet.. so I'll be on one more time before we head out on the ship.

I hope you all had Happy Holidays and have a wonderful New Years!

 

[Nancy]

(((Kate))) I'll be wishing you the very best.

 

[Kate]

Thanks Nancy. I just talked to the Sleep Medicine place.. and I am not ever going there again. I am officially done with that place.

They want me to go against what my neurologist and my family doctor want, and still take Ambien instead, although it has done me no good. I have seen my neurologist for at least three years (saw her for bad headaches before the seizures started) and I have had my family doctor for even longer.. and this sleep doctor for only a few months.

The nurse I spoke to was so rude I had trouble not crying. She seemed so offended that I would talk to my regular doctor about my sleeping medicine instead of just them, but when all they would put me on was a medicine that wasn't working, what was I supposed to do? *sigh*

I cannot get over how completely rude she was. And that she expected me to ignore what two other doctors explained.

I'm waiting on a phone call from my family doctor, since he is the one who prescribed my most recent sleeping medicine, and they are going to be calling in some prescription for me before we leave town. What a way to start the day!

 

[wonderdogs]

I am really sorry, Kate. I wonder if the stress of traveling is not the best thing for you right now. Whatever you decide I hope you get a good nights sleep soon.

 

[RobinN]

Kate, so sorry to hear about your emotional struggles. The holidays can be tough even when you aren't going through a difficult time.

Now I have done a very quick search of a few groups I belong to, and it seems to be a standard answer to the question of "trouble sleeping". Obviously I am not a doctor, but these are alternative therapies that these parents are trying, done through DAN doctors that treat illness through bio-medical treatments. So you need to understand that they are attempting to treat without prescriptive medicines. You could be creating such a chemical imbalance in your system with all of the meds you are taking. I would think this could very easily cause emotional upsets, and sleep issues. Also, as stated below, the intestinal health plays a huge roll in your sleep cycle. Take it for what it is worth... just a suggestion as a place to start looking.

The following are taken from posts that brought up the issue of sleep difficulties...

"In my house, sleep issues are almost always yeast related. The question I would ask about your labs is how much yeast is hshowing? Yes, everyone has yeast but not everyone has a systemiyeast infection - big difference."
****
"...his yeast seems to be under control because nick's first sign of yeast is trouble sleeping.
****
"I am however very happy to report he doesn't have trouble sleeping anymore (providing he doesn't have an infraction...or grandma lets him have regular Coke.... gggrrrrr). For it, he's on melatonin, GABA, Taurine and 5htp (melatonin and 5htp right before bed along with a small amount of magnesium sulfate cream massaged into his back after a bath)."
****
"The being awake at night rings bells of a possible phenol problem, fruit problem, or just too much sugar (a yeast overgrowth, I should say. The sugar affects the yeast and makes it worse). Cut down on the sugar, any artificial colors and flavors, and give your child epsom salt baths at least 3 times a week in the evenings. Epsom salt baths are done by putting 2 cups of epsom salt into a warm bath and let the child soak for 20 minutes. It does wonders to help calm down my son."

 

[Birdbomb]

(((((KATE)))))

Lack of sleep will make you feel like a train wreck. I hope you will be able to find something that works for you.

 

[brain]

((((((((( Kate ))))))))))

Hugs!!

 

[Dutch mom]

Hello Kate,

I do know how terrible bad sleeping makes you feel; have had long periods of bad sleeping because of my son with epilepsy being awake all night and we both were having a bad mood all day because of not getting enough sleep.

Have you tried melatonin?

My son is on 6 mg every night 15 min. before going to bed and is doing very well sleeping since then. He didn't do well at all on sleeping meds like clobazam, which gave a contradictory effect (got hyper and was awake all night.) He started on 3 mg which didn't seem to help much, we raised it to 6 mg while weaning clobazam.

Research shows melatonin has a positive efferct on sleerping/ day-night rhytm and can have an anti-epileptic effect on night seizures for many (in a Dutch study mentally impaired/ceberal palsy) children.

Melatonin is free for sell and is commonly used for jet lag in small doses (0,1-0,2 mg.) But children with epilepsy, sleeping problems and night seizures do get it on precription in high dosages (5-10 mg.)

Worth a try!

Robin quoted: "For it, he's on melatonin, GABA, Taurine and 5htp (melatonin and 5htp right before bed along with a small amount of magnesium sulfate cream massaged into his back after a bath)."

Don't think GABA and melatonin is a good combination. There's a warning when using steroids too. See precautions.

Melatonin

Melatonin is an important hormone that is secreted by the pineal gland in the brain. Since its identification in 1958, studies have shown that melatonin plays a crucial role in ordering the complex hormone secretion patterns that regulate the body's circadian rhythm.
The hormone melatonin is an efficient free radical scavenger and singlet oxygen quencher. Singlet oxygen is an "excited" oxygen molecule whose excessive discharge of energy causes damage to other body molecules. While most antioxidants work only in certain parts of certain cells, melatonin can permeate any cell in any part of the body. Most importantly, melatonin is one of the few antioxidants that can penetrate the mitochondria which produce energy. Melatonin seems to protect the mitochondria from free radical damage.
Melatonin also helps control sleeping and waking periods, because its release is stimulated by darkness and suppressed by light. It also controls the timing and release of female reproductive hormones, affecting menstrual cycles, menarche, and menopause.
Overall levels of melatonin in the body also contribute to the process of aging. The standard rhythmic pattern of melatonin levels are absent until about 3 months of age. After that, the nocturnal levels of melatonin are at their highest for the first few years and then begin to decline as puberty begins. After puberty, nocturnal melatonin levels are relatively stable throughout adulthood and then fall as people age. In old age, the nocturnal rise in melatonin may be barely detectable. Because melatonin opposes the degeneration caused by high levels of corticosteroids (e.g., protein catabolism, suppressed immune function, and altered blood glucose metabolism), higher melatonin levels may help promote health and extend life span.
Studies show that jet lag is most likely caused by a disrupted circadian rhythm that can be effectively adjusted by using melatonin. A dosage of 1 and 3 mg every evening for a week acclimates you quickly to a new sleep schedule, restoring slumber (in the dark) with a minimum amount of fatigue upon awakening (when it's light).
Taking timed-released formulas, in dosages as low as a single milligram, may be more advantageous. They prevent the hormone's level from peaking too soon, which will awaken you too early.
Insomnia that is seen in the elderly and in some children with sleeping disorders is usually caused by low melatonin levels. That, too, can be treated with the proper supplementation. Taking 0.3 mg of melatonin at bedtime, one study demonstrated, markedly improves sleep patterns among elderly people who had problems falling asleep and remaining asleep for the remainder of the night.
Childhood diseases that may cause melatonin-related sleep disorders include autism, epilepsy, Down's syndrome, and cerebral palsy. Melatonin supplementation can also benefit blind people whose sleeping rhythms are disturbed.
*Melatonin is not effective as a sleeping aid for persons with normal melatonin levels.
The hormone rejuvenates several components of our natural defense system, and their strength combines to create a more powerful immunity. One way in which melatonin might fight cancer is by stimulating the immune system's natural killer cells. Other studies confirm that the hormone sends white blood cells a signal to protect the body, and animal research points to its ability to bolster overall immunity. Some scientists speculate that this immune impact might be targeted against AIDS.
Some metastataic cancer patients have lived longer by taking at least 12 to 20 mg of melatonin every night.
As the body's concentration of melatonin falls, reasearch affirms, the likelihood of heart disease rises. A deficiency is also associated with elevated blood levels of cholesterol and triglycerides.
One pilot study suggests that melatonin (10 g) could prevent cluster headaches from taking place.
A melatonin deficiency commonly appears in people with Alzheimer's disease. Alzheimer's affected brain cells are also damaged by hydroxyl , one of the free radical molecules that melatonin controls effectively.
Many studies have shown that some patients suffering from depression have lower-than-normal melatonin levels. Seasonal affective disorder (SAD) is often effectively treated with phototherapy, and research has shown that SAD patients often have delayed melatonin rhythms in the winter.
While some forms of depression may have direct links to melatonin levels, other types of depression have not responded well to melatonin treatment. Exaggerated depressive symptoms have been reported in some cases of depressed patients receiving daytime melatonin supplements. Melatonin has increased psychotic behavior in some schizophrenic patients.

Deficiency: Melatonin deficiency is associated with the following: menstruation, aging, autism, epilepsy, Down's syndrome, Alzheimer's disease and cerebral palsy.

Sources: Melatonin is a hormone manufactured by serotonin and secreted by the pineal gland. It is an indole, like the simple amino acid, tryptophan.

Precautions: There are no known serious side effects to regulated melatonin supplementation. Some people may experience vivid dreams or nightmares. Overuse or incorrect use of melatonin could disrupt circadian rhythms. Long-term effects have not been well studied. In rats, melatonin decreases T4 and T3 uptake levels.
Melatonin can cause drowsiness if taken during the day. If morning drowsiness is experienced after taking melatonin at night, reduce dosage levels. In some cases of depression, daytime doses of melatonin can increase depression.
May be contraindicated for those with autoimmune disorders and immune system cancers (e.g., lymphoma, leukemia).
Because melatonin suppresses corticosteroid activity, those who are taking corticosteroids for anti-inflammatory or immune suppressive purposes (e.g., transplant patients) should exercise caution with melatonin supplementation.
Melatonin could interfere with fertility. It is also contraindicated during pregnancy and lactation.
Lack of sleep and insufficient exposure to darkness may suppress natural production of melatonin.

Dosage Ranges and Duration of Administration: Official dosage ranges have not yet been set for melatonin supplementation. Sensitivity to melatonin may vary from individual to individual. For those especially sensitive to it, lower doses may work more effectively than the standard amount. Higher doses could cause anxiety or irritability.
For treatment of insomnia, a dose of 3 mg taken an hour before bedtime is usually effective, although dosages as low as 0.1 to 0.3 mg may improve sleep for some people. If 3 mg a night is not effective after three days, try 6 mg one hour before bedtime. An individually effective dose should produce restful sleep and no daytime irritability or fatigue.
For treatment of jet lag, take 5 mg of melatonin one hour before bedtime upon arrival at new location; repeat for the first five days. Long-term melatonin supplementation should not be carried out without a health care provider's supervision.

INTERACTIONS

Clonidine; Methoxamine
Melatonin impaired the efficacy of both methoxamine and clonidine by relaxing vascular smooth muscle through an undetermined mechanism in an ex-vivo experiment using thoracic aorta excised from male rats (Weekley 1991). It is not known whether exogenous melatonin can antagonize the effects of methoxamine and clonidine in humans.

Desipramine; Fluoxetine
In an experimental rat study, exogenous melatonin (0.25 mg/kg/day) abolished the antidepressant effects of desipramine and fluoxetine possibly through interference with tryptophan-2,3-dioxygenase activity (Walsh and Daya 1998 ). More research is needed to determine if exogenous melatonin counteracts the effects of antidepressants in humans.

Tamoxifen
Preliminary research suggests that tamoxifen plus high-dose melatonin may be of benefit in patients with metastatic solid tumors or breast cancer (Lissoni et al. 1995A; Lissoni et al. 1996). More research is needed to confirm these effects.

Triazolam
The combination of melatonin (100 mg/day) with triazolam improved subjective sleep quality in healthy subjects (Ferini-Strambi et al. 1993). Another case study reported that melatonin (1 mg/day controlled release) improved sleep quality and enabled a patient to cease long-term benzodiazepine therapy (Dagan et al. 1997).

 

[todub]

Sorry to hear about your troubles. I am a 22 year old male epileptic who has known about my condition since august 07. The first med I tried was Keppra, it sounds like your condition is far more severe than mine because I only have complex partial seizures that are pretty easy to control with the new meds i take (topamax). But anyway, Keppra is no beuno. That stuff literally made me insane and I didnt even take a large dose. I was on campus at school and saw my ex girlfriends new boyfriend who i had nothing against and knew from previous interactions and I had to turn and jog away from him because I was visualizing grabbing him by the neck and posting him up against a wall and strangling him in the middle of my college campus. And it would have been really bad because this was in the first three weeks of taking these terrible meds before it stripped me of my size and i was 6'7" 225 lbs. Now im obviously the same height but 180 lbs because of Topamax. Three weeks after switching from Keppra to another drug I was hanging out with my ex and her boyfriend who i nearly beat up because i was again sane, and me and my ex remain friends. Anyway long story short Keppra may work but it may also take your life in terrible directions, and valium will destroy your body slowly as well so be careful.

 

[montse]

Kate, I hope you will get better, many geertings from Barcelona, Spain.

 

[CuHead]

I have been having so much trouble sleeping. They have tried me on literally everything. The 20 mg a night of Ambien didn't work, the Ambien CR didn't work, and now, the most recent medicine, the Halcion, is not working. I take .25 mg of Halcion at night, and I'm lucky to get four hours of sleep. And I mean lucky.. as for last night, I think I maybe had two and a half hours.

My wife has problems sleeping and has had cycle related seizures. We don't know why her sleep is so light. Thanks for posting the topic.

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Research shows melatonin has a positive efferct on sleerping/ day-night rhytm and can have an anti-epileptic effect on night seizures for many (in a Dutch study mentally impaired/ceberal palsy) children.

Dutch Mom, Thanks for the informative post about melatonin. Some months ago we tried melatonin (3mg?) briefly. It does help cause sleep. My wife is a VERY light sleeper. We are going to try a regular nightly dose and hope it helps.

Later all!