posted
My dd has been struggling terribly with insomnia. I recall going through this but it was several years ago and before I was dx myself. I fortunatley ahve a very flexible job and can work around whatever I am dealing with in the life of Lyme but she does not.
We need help!!!! I dont know what to do to the point I have been considering home schooling through these first 7-8 months of tx for her. She started flagyl and is moving to Doxy.
Insomnia, fatigue, emotional, GI, spasms, concentration, hair loss are the top of her sx list. The insomnia and fatigue factors are taking her down once again today and she is simply incapalbe of gonig to school.
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Has she been tested for adrenal fatigue? If the adrenal gland is not functioning, she could have high cortisol levels at night keeping her up, and low in the day making her tired.
There are ways to supplement and strengthen the adrenal gland if she does.
Other thing to ask is if she started any new meds. I had insomnia the first few months on my muscle relaxer.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
She has been tested for Cortisol levels and they were fine. only new med has been Flagyl but the insomnia was there before that as well....
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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bettyg
Unregistered
posted
cj,
check out SUPPORT, hsbh... post about IOP or something like that. Nancy has all kids w/lyme w/oldest missing a lot of school.
find her post, and post or send her a pm from that post; she's been there; done that, and fighting them every step of way.
best wishes on your daughter! how old is she?
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hey their CJ,
That advice from BettyG is good stuff. You should be able to get some kind of special relief from school system....eventually.\
On a very important note however....why is your child taking flagyl.....
IT's noted in ILADS and DrB that metronidazole and or flagyl or the other cyst busters are recommended for ADULTS ONLY!
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Flagyl gives me insomnia. Really bad. I doze, but don't get
Into deep sleep.
I have switched to Flagyl er (750mg) which I take first thing in the morning.
It has helped some.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
She is 16 and weighs 180# but it was actually given for a Bacterial Vaginosis from gyno.
Thanks Bettyg, will look her post up....so frustrating! Even more so when I cant do anything to really help her like I could when she was little, you know....hate wathcing her
suffer and I cant do a darn thing for her...and she has less patience than I do as an adult with getting better now - wanting the magic pill and heck I have that want too but can rationalize so much better......
so frustrating......sure wish I had it to give to her so she could just go and "fly"!
Maybe if I win the lottery I can help in the funding to find the frickin answers we need!!!
UGHHHHHHHHHHHHH!!!!!!!!!!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I am having the same problem. NOt sure about teens and sleeping pills.
I took restoril for a while, but it stopped working.
I tried ambien samples...they did not work
I tried lunesta samples. They worked but cost is too high ..looking into other resources for it.
$160 for one month's supply.
Tried trazadone but it is not working...took 250 mg last night and was up past 4 am
body is feeling like a truck ran it over again.
I think it is due to lack of sleep. Brain is not working as well as It was while on lunesta.
Going to order 5HTP on the first. I had good luck with it before I became so low functioning.
Tried 5HTP from health food store here but found it did not work.
Going back to brand I once used years ago while working.
Once I get it, I could let you know what the brand name is ..if it works.
Couldn't find the post that was recommended
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I really tried to hold back as I'm a real herb-chick.
I just can't do even slivers of most drugs.
I have found great help with some herbs such as FuShen and Zizyphus, but in a a balance formula, not alone.
Skullcap (scullcap) might also be an option. Scute is similar but not as calming.
I can offer abstracts from PubMed - and articles about the herbs by researchers in this field - and I can tell you of particular formulas I get from a top source.
If you want more information I will post it here for everyone or send it PM. Let me know.
Also, as hard as it is, avoiding computer and TV for several hours before bed might help. Evening TV, if nature or dreamy travel DVDs would be better than commercial TV with jolting and scary interruptions for the brain and eyes. That's very exciting for the brain and adrenal hormones.
I assume she has no MSG (in any form) in her diet nor any sort of aspartame (nutrasweet). All that is excitatory, even toxic and could, itself, trigger insomnia. Even some cough drops, gum, toothpastes contain it as so many "sugar-free" products.
Unplugging all electrical stuff in her room, putting alarm away from bed, phone, too. Soft music, yoga . . . all stuff you've probably done already.
A small balanced snack, such as a bit of lentil soup or hummus, an hour or so before bed can help keep blood sugar stable and offer a little protein. Often, insomnia is a result of low blood sugar, especially waking in the middle of the night.
Dark curtains to block out all light. If the alarm is any color light other than red, cover it. If our eyes see any other light besides red, our brain wakes up. Really.
Let me know if you want more info. on the herbal formulas I use - I'm not talking valarian here as that makes me very hung over. 5HTP also caused me some problems.
These others - in formula, not alone - are far easier on the body and work to settle down the excess, wired and tired, sensation.
If you have an acupuncturist or ND nearby they may also help.
[edited to add: If you have any new perfume products or cosmetics around that can also trigger insomnia. Fingernail polish fumes, any new vinyl . . . all can be endocrine disruptors and get the body sort of wired. I would constantly be doing my nails in my teens . . . wore lots of fragrance . . . always fuzzy during the day but wired at night. Never thought to open a window. Ah, those were the days. . . .
-
[ 29. January 2008, 11:31 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi CJ, I just saw your post.
I've been dealing with school stuff all day.
Your daughter needs help from the school as Betty and Tony suggested.
Send a short written letter to your school requesting they conduct a "complete evaluation" on your daughter. This provides a paper trail (very important!) and starts the referral process.
You may want to state your specific concerns and add 3 sentences or examples explaining why you think your daughter needs considered for evaluation, such as excessive absences, declining performance in school, and limited strength and endurance.
Put everything in writing and keep copies of all correspondance with the school.
NEVER give them permission to get your child's medical records. They may attempt to intimidate you into giving this information. They don't have anyone qualified to interpret your daughter's medical records.
Consult an education attorney if you have any question about what information the school must legally be given. They may ask for a bunch of stuff that you are not required to tell them or give them.
Beware of social workers trying to be 'helpful.' Don't let them in your home without a search warrant or a court order. Don't learn the hard way. Look up PJ Langhoff's books.
The school has 10 days to respond to your letter and must set up an appointment for the evaluation in a certain time period.
The 504 evaluation is a 5 or 6 page document with a series of a checklists. If you have the correct number of responses, then she qualifies for a 504. A 504 doesn't require your child to be evaluated.
An IEP is a more detailed document and your child will be evaluated by several people in different fields...speech & language, hearing test, vision test, achievement test, IQ test, physical therapy evaluation, occupational therapy evaluation, assistive technology evaluation, etc...
This is a very thorough free evaluation and it must be completed within 60 days of when your daughter is accepted for evaluation...when they decide your daughter qualifies to be evaluated.
This process is regulated by the federal government. You may want to go to your state education website, look up special education, and look into the qualification process. Look up 504 and IEP differences.
I'm just going through this process with my teen daughter, who missed school lst year due to illness. She was too sick to receive homebound service, although it was awarded to her last year.
If qualified, the school must send a homebound instructor to your house. They must provide everything you need for her education...free.
Do you need homebound service? The only thing you need is a letter from your daughter's physician to the school. It should state that she is under his care, has the diagnosis of ---- (Lyme and any coinfections, insomnia, etc...), and requires homebound education for a certain period of time (2007-2008 school year or until further notice).
The physician can include a prognosis, and a list of a few of her main symptoms, and can make suggestions for the amount of school work your daughter is able to handle....X hours a day for X days a week, not to exceed X hours a week.
Many children with Lyme qualify for an IEP and are classified as Other Health Impaired. A 504 is a step below the IEP, but you can get homebound through them. Both are federal programs.
Your child may not need homebound service; she may just need some accommodations at school to help her make progress without penalties for excessive absences or tardies. They can give her extra time to complete assignments and tests, and can make provisions for scheduled rest periods during the school day.
They may allow her to call home or go home any time she feels bad, or go to the nurses station away from sick children. She can have her PE class give her less trenuous work or the option of sitting out when she's feeling bad.
Some schools are difficult to deal with...either out of ignorance or malice. Schools generally don't like to take money from their budget for special ed purposes, but they must, it's the law.
You may want to talk to a supportive person at school, such as your child's teacher, school nurse, or principal. They can start the referral process, but a letter from you requesting the evaluation is all that's required legally...not a phone call, or a parent conference.
School personnel may respond to your verbal request for an evaluation, but legally they don't have to do anything until you put it in writing. I made this mistake and it's cost us dearly.
Go to your PTA meeting and ask if anyone there has a student with a 504 or IEP. Connect with other parents who have dealt with your school system. Find an advocate for your daughter.
Go to your district special education director and ask for information about special education.
One option you may want to consider is homeschooling. It will avoid a lot of red tape, but has it's own challenges.
We're in the middle of the IEP referral process now. It takes some time, but the results will be worth it. An IEP can follow my daughter to college if needed...until age 21. You can de-classify from IEP when you need to or chose to.
Keep in touch.
[ 30. January 2008, 08:21 AM: Message edited by: hshbmom ]
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Your child may need some medication to help her sleep. Talk to her physician.
Does she take Diflucan for yeast?
Does she take probiotics?
What methods are you using to detox?
Do you have a Lyme literate doctor?
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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posted
My post didnt come up yesterday???? Whats up with that????
ANYWAY!!!
Talked with our Naturopath MD and he stated that CALCIUM is a great aide with insomnia, sleep issues.
So we added liquid calcium with mag as that helps with spasms/twitching issue too. second night and seems to be helping some. Not a magic potion mind you but we can both tell a difference, espcially in the twitches which we all know is welcomed!!!!!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
I have terrible insomina. I take Lyrica, which has helped tremedously. Its an anticonvulsant, but its used to treat pain for a lot of disorders since it slows nerve impulses down. It also increase the amount of time you spend in deep sleep, which is the sleep where your immune and other body systems repair. AND, it is free of a lot of side effects, is not addictive, I don't wake up to groggy.
I also take remeron, which is an antidepressent, and makes you sleepy.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
Levaquin helped reduce my insomnia.
Bart for me has caused many of my syptoms including headaches, heart palps, and sleep disturbance.
Has she ever been tested or treated for bart?
Posts: 1603 | From ny | Registered: Aug 2006
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posted
I'm sorry your daughter is having a hard time. Flushing out the toxins is very important. My daughter is on a pulsed treatment of amoxicillin, zithromax and biaxin.
Flagyl is added for 2 days of a 14 day period. She also has to take vitamin b complex, probiotics, alpha lipoic acid, co Q10, glutamine powder and drink lots of water.
At night she takes gabapentin/neurotonin for restlessness. She also takes diflucan once per week.
She just started homebound. Our LLMD filled out the form we got from the school district. The next day she was set up with a teacher to come to the house for instruction.
This way she does not have to get up at 6:00am to go to school. Some districts are better than others at coordinating this, but it is a good option if your child is missing a lot of school.
I hope you find something that works for her. Hang in there!
-------------------- I do not feel obliged to believe that the same God who has endowed us with sense, reason, and intellect has intended us to forgo their use. -Galileo Posts: 61 | From South Carolina | Registered: Oct 2007
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
I had severe insomnia for about a ten years. The ONLY thing that helped me was neurofeedback.
Drawbacks: very expensive, takes a long time. Watch out for shysters -- not all neurofeedback practitioners know what they are doing -- which can make the treatment take even longer.
However, becuase teenage brains are still developing, the number of sessions required may be considerably fewer -- I'm guessing about 40 sessions, about 20 weeks. Just a guess. Insurance may pay some of the cost.
peace, cotton
Posts: 1173 | From USA | Registered: Nov 2007
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Here's notes from a post I put up more than 3 years ago (and note - I no longer need any aids, but will use this to relax on occasion):
Ambien worked for about a month. Flexeril worked in the beginning, but no longer knocked me out. Here's what broke the 'no sleep' cycle for me: Essential Oils
I used three essential oils each night. Two of them on the bottom of my feet, and one I put a drop under my nose. OMG, so relaxing. Was recommended by a therapist who uses on kids with ADD.
One is called Valor, containing Spruce (Picea mariana), rosewood (Aniba rosaeodora), blue tansy (Tanacetum annuum) and frankincense (Boswellia carteri) in a base of almond oil.
The other is called Peace and Calming - contains Tangerine (Citrus nobilis), orange (Citrus aurantium), ylang ylang (Cananga odorata), patchouli (Pogostemon cablin) and blue tansy (Tanacetum annuum).
The third oil is Jasmine.
About an hour before bedtime:
Rub a drop of Valor into the sole and toes of each foot. Make sure you get the toes and in between toes. A little goes a long way. Then cup your hands over your nose, breathe in for a bit.
Rub a drop of Peace and Calming into the sole and toes of each foot. Make sure you get the toes and in between toes. A little goes a long way. Then cup your hands over your nose, breathe in for a bit.
Put a drop of Jasmine on your finger and rub it under your nose. Of course, cup your hands and breathe it in.
Magically, my sleep issues went away. I've have not missed a single night's sleep since I started this 3 months ago. On weekends, I'll sleep 10-11 hrs if I don't set an alarm. (again, this is a post from more than 3 yrs ago)
Co-pays are cheaper, but I've yet to find a prescription that let me sleep like this.
Not pitching anything, just sharing what worked. Hope this helps!
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Julie,
How much are these essential oils?
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Hi Kam
Valor: $26 Peace and Calming: $39 Jasmine: $82
Like I said, not for the faint of wallet, but a little goes a VERY long way. I think when I was using them daily, the Jasmine last me about 9 months and the other 2 (you can use more on your feet) about 4 months.
I keep a bottle of the Valor in my purse for stressful days. I think my brain is now trained to think 'relax now' as soon as I smell it.
Hope this helps.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
thank you ALL for your suggestions and HBMom, for yourguidance. I cannot seem to consume all this right now so will come back and study when I am clearer headed
wonder when that will be
had a crazy week for sure - taking classes, working, sick kids, yes two - my youngest has had a fever, virus issue all week, terible but i can say i am doing soo much better! I have pushed to the limits this week and I am still GOING!!!!!!!!!!!!
Hope I dont crash and burn! But I definitely need some
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
I went through a time when I couldn't sleep. Ambien did not work at all, nor did Trazadone.
The only thing that worked for me was Lorazepam which is an anti-anxiety. I was on Xanax before that which also worked but I got terrible rebound anxiety between doses and that did not happen with the Lorazepam. The Lorazepam also is not as addictive.
It got me over a very big hump. I didn't want to take medication like that but we need sleep to get better. I was only on it for a few months and (knock on wood) I am able to sleep now without anything.
Laura
Posts: 2541 | From Northeast | Registered: Jan 2008
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