we're definitely not new to any of this, and this insomnia is about as severe as i've ever heard about in any patient, long term, unrelenting.
my son has had some improvement in a number of extreme neuropsychiaric symptoms over the course of several months on ab's listed below, but still has (among other issues) severe processing disorders and insane levels of insomnia.
ab's started to help, then plateaued on this symptom, then worsened as meds have been added to help with the processing.
without processing meds he cannot function safely at home.
without sleep, he cannot function much at all.
i don't even know what to ask here, except perhaps things we have not tried that might come as ideas from anyone else with severe (i mean all night) insomnia. this has been going on for many, many months on end.
meds: rifampin mino amox - all the above is for lyme, bart, and myco f namenda - memory/auditory processing ritalin la - auditory processing, focus lexapro ambien CR 12.5 sleep.
for sleep: tried trazadone, had the opposite effect. tried lunesta, had the opposite effect tried melatonin(rozeram sp?), opposite effect
severely allergic to any anti-psychotic and many anti-seizure meds. for processing, has tried provigil, sever adverse reaction, adderall, same thing, and the ritalin la is tolerated but may be, obviously, contributing to the insomnia - even tho it is only supposed to act for six to eight hours, and is taken early in the day.
we will be starting LENS neurofeedback, which may help, i don't know.
we have been working with a team of LLMD's, all focused on these issues, but have come up short on relief for this symptom. -- he's also taking the right kind of magnesium and fish oil. he mainly has "restless leg" kind of insomnia all night, ie: can't turn the mind off, but moreover has the uncontrollable need to move and walk, if he does not it is "painful" to be still.
mo
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
Some acupuncture schools have clinics where they offer treatment at very reasonable costs. An experienced acupuncturst has to approve all of the treatment plans of the students.
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
mo-i am so glad you are finally getting the kind of tx you need...i dodn't know when it started and the craiziness you guys went thru eneded.
i have had insomnis-often all night-ilke toothpicks holding my eyes open for over 20 yrs
a few years in i saw my mom with undx lyme get severely anxious. the docs controlled it with vistaril. it is an old drug-an antihistimine with anti-anxiety properties. they gave her ALOT. shewould just lie and shake from it.
i saw how it made her sleep and asked my doc about it. they tried me on a very smapll dose-20 or 25mg a night and it worked. i got to REM sleep-sometimes slept 6 hrs straight and only got up once or twice to pee(but i'm an old lady)
i loved it cuz i was never sleepy the next day
as time went on i had to increase to 2 or accasionally 3 pills. but it worked for years for me
i was wanting to cut down on the vist and an llmd suggested melatonin AND 5htp and it worked but was expensive...dosage was important -i would have to look that up for you
then i had my amalgams and root canals out and have not had a problem with insomnia since. (wish i had done this a long time ago, because this symptom affects everything-functioning, healing etc. we found a good dentist in montreal better and cheaper even with travel than any in states. )
if you want contact info for dentist pm me
good luck
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
the ritalin would be a contributing factor by far. any other option???
with the "opposite" affect of the other sedative type of meds the is likly he is having some add type things to begin with, see this all the time with our oldest. (not worked up for lyme just yet, but add for yrs)
maybe try the two stage release melatonin?? is better than the direct helps the get to sleep and stay sleep. this maybe in with muscle relaxant class medication?? the muscle relaxant for CNS issues may help to calm things down at night. benadrly prob. makes it worse with opposite affect again? im sure this is a given, bu the sticking to strict evening schedule with time to unwind. warm bath, reading time with all tv's off, no other house noise. we have to do this for my gang in general to help all them settle down and unwind for the night-- makes HUGE difference in all 3 for this to be our routine. even mommy has quiet time with them and read myself for bit. actually have gotten to like the no TV thing myself. we do this starting about 7 and in bed by 8-8:30 for the older.
instead of ritalin could yall try another type of stimulant in another form?? little coffee or tea dependant on his age?? would wear off faster and be used by his body for the initial jump start ritalin can have?? just thoughts
ran a drug to drug for you , was pretty sure i remembered the ritalin with lexapro was iffy and in kidoes (of course not sure your childs age or weight) is usually stay clear of :posting those results below...best wishes
DRUG TO DRUG REPORT: Ritalin LA (methylphenidate) and Lexapro (escitalopram) (Moderate Drug-Drug)
MONITOR: The coadministration with methylphenidate may increase the plasma concentrations of selective serotonin reuptake inhibitors (SSRIs). According to the manufacturer, human pharmacologic studies have shown that methylphenidate may inhibit the metabolism of SSRIs, and there have been reports that methylphenidate augments the clinical response to SSRIs.
MANAGEMENT: Pharmacologic response to SSRIs should be monitored more closely whenever methylphenidate (racemic) or dexmethylphenidate (the more pharmacologically active d-enantiomer) is added to or withdrawn from therapy, and the SSRI dosage adjusted as necessary.
Ambien CR (zolpidem) and Lexapro (escitalopram) (Moderate Drug-Drug)
MONITOR: Central nervous system- and/or respiratory-depressant effects may be additively or synergistically increased in patients taking multiple drugs that cause these effects, especially in elderly or debilitated patients.
MANAGEMENT: During concomitant use of these drugs, patients should be monitored for potentially excessive or prolonged CNS and respiratory depression. Ambulatory patients should be counseled to avoid hazardous activities requiring complete mental alertness and motor coordination until they know how these agents affect them, and to notify their physician if they experience excessive or prolonged CNS effects that interfere with their normal activities.
Other drugs that your selected drugs interact with * There are 1160 other drugs known to interact with Ambien CR (zolpidem)
* There are 1749 other drugs known to interact with Lexapro (escitalopram)
* There are 676 other drugs known to interact with Namenda (memantine)
* There are 309 other drugs known to interact with Ritalin LA (methylphenidate)
Interactions between your selected drugs and food Ambien CR (zolpidem) (Moderate Drug-Food)
ADJUST DOSING INTERVAL: Administration of zolpidem with food may delay the onset of hypnotic effects. In 30 healthy subjects, administration of zolpidem 20 minutes after a meal resulted in decreased mean peak plasma drug concentration (Cmax) and area under the concentration-time curve (AUC) by 25% and 15%, respectively, compared to fasting. The time to reach peak plasma drug concentration (Tmax) was prolonged by 60%, from 1.4 to 2.2 hours.
MANAGEMENT: For faster sleep onset, zolpidem should not be administered with or immediately after a meal.
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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posted
thanks claire, acupuncture is an excellent suggestion, he did this last year with craniosacral.
at this point the practitioner(s) feel he is on so many meds, and the fact that he is going to start neurofeedback (plus has been doing cold laser with PT), we are not going to add anything like acupuncture until we see how LENS works.
ipkayak, thank you too, i'll ask doc br. about that one. son has no amalgams.
hey M3, thanks for the detailed response. i know, the ritalin la is both friend and foe at this point. i am not comfortable at all with the number of meds being used right now. basically, my son would still need hospitalization if he did not have the focus factor that ritalin gives him. it somehow helps with focus and daily functioning, more than acting as a stimulant in his case.
but it's contributing to the insomnia, which is there even without it. ambien CR used to work after two hours, but is not as effective anymore, however there is adverse reactions to all others tried so far (yes, benadryl too). melatonin, no go. * but muscle relaxants may be something to check out. hadn't thought of that.
so.. either something to work with ambien, or something to act as ritalin without increasing the insomnia, or just waiting and living with it until the abx do more for the brain infection.
SPECT scan run last month (5/6 months after starting the above abx combo), shows notable improvement, but still patchy hypoperfusion, severe in some areas.
what a mess. thanks for running the interaction warnings, i've seen that... and his doc (LLpsychiatrist) and LLMD are aware of and managing this.
his lexapro dose is very low.
ugh. still not seeing the forest through the trees............
mo
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I agree that the ritalin could be a contributing factor. My grandson is ADHD and his med sometimes causes insomnia.
Also just LD itself. I slept a total of 3 hours for years and now after almost a year of treatment, I still only get about 6 hours. Nothing I tried helped me except for xanax. Sounds like he can't take that.
Could you reduce the ritalin or cut it out all together and see if that helps?
Posts: 4035 | From Mississippi | Registered: Jul 2008
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Mo, I think I am hearing that things are better..Thank God and I pray it continues...You know our kids are on a fragile tight rope..
I was always afraid of Ritalin..We did not try it. But my lymie is on Adderall with some success. Not the same thing I know but it might help.
Also read somewhere that Melatonin can be a curse if you don't try to sleep as soon as you take it.
Good luck..You are going into uncharted waters and winning...hugs lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
I have had severe insomnia (the up all night kind) although I've been able to manage it for the most part over the years with the right combo of meds. Not always though - it is debilitating if you can't sleep.
Anyway, it sounds like your son has many different contributing factors going on - but for the first time in a long time I am seeing an improvement in my sleep - my LLMD added topical magnesium to my regimen last visit (I've been taking it orally for 5 +years) and it's made a huge difference for me.
I think I just wasn't able to absorb the amount of mag my body needs orally, but transdermally it's making a huge difference.
Hope you find a solution
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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posted
southerngirl, i am wondering the same thing, however at this time he would need a replacement for the ritalin, until his ability to function rises to a higher degree. his level of dysfunction without it has proven unsafe.
hey lymemom2! thanks, i know you know our plight. he was on adderall and also tried concerta, these are both longer acting than the ritalin la and he experienced extreme agitation on both of those.
provigil too. the ritalin is the only one that doesn't cause that. i'd rather we never knew the names of any of these drugs. but he has a good relationship with the LLdocs and is following their plan, so that is a good thing, compared to where he was a few short months ago.
if i can support continued improvement and a bridge to a more tolerable treatment plan, we may just survive the year - out of grave danger - and that would be a miracle based on what we've been through. your support always means allot to me.
i hope things are relatively ok by you.
have you any experience with neurofeedback?
larkspur, thank you! i know he needs magnesium and i recently succeeded in gaining his compliance with taking magnesium malate (liquid).
could you please share more details about the topical mag? is it prescription?
mo
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
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My LLMD has me doing minimum 3 pumps 3x a day anywhere that is sore or over my spleen and liver (upper abdomen) if no where else is sore
of course you would want to check with your own LLMD about the dose
Anyway, it's like a miracle cream for me - it is helping with muscle spasms too!
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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posted
Oh FYI - I use the Magnesium Citrate cream - I see they sell 2 different kinds
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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Jordan has severe insomnia. I think his symptoms would lessen if he could get quality sleep. He has an appointment with a sleep specialist next month.
We found out by accident the Promethazine works for Jordan. He was very nauseous one night at bedtime. He took the Prometh and said he slept better than his had for a long, long time.
Jordan's on a combo of meds and still does not get quality sleep.
Good luck!
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
rifampin gave me worse insomnia too-missed that the first time i answered
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Mo, the clinic suggested neuro feedback and a basket full of other things that we have not been able to do..After my bus run, I will try to see if they had any good info listed on that.
And any new parents that may be following Mo's post, please rush to get the babies well before they turn 18!!!! lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
Hi Mo. Sorry if I missed it, but how old is your son?
I have all the same symptoms... God help us!
The leg and nerve pain has been relieved somewhat with an iron supplement and a B vitamin called methylcobalamin. B complex has been helping with my hand and arm numbness for years.
I don't take a conventional sleep aid, but I have found relief with herbs such as chamomile tea, "stress relief" herbal tinctures with heavy hitters like valarian, skull cap, kava, and poppy, etc. Ask an herbalist. Use caution. These are drugs, too.
I know exactly what it's like to not be able to turn off the volume (physically and mentally)and get over stimulated very easily. I have sensory integration disfunction.
Try giving him a big soft down pillow to bury his head in. I wish for an isolation chamber, sometimes. How 'bout the bath? Is that comforting for him?
Ear plugs never leave my person... Sun glasses are manditory...
Does he seem bothered by his clothes? Let him wear sweats, if he wants.
See how he does if he clenches all his muscles and then relaxes a few times. Clench, rest, repeat.
I don't know what to suggest for sleep- I just know that I have to work hard to block out the stimulus from the outside and it takes some willful determination to convince my damaged brain to stop chewing on everything that passes through.
These things have helped me, but I'm still a frazzled mess most of the time.
Sleep is key. No tv, computer games, or loud music in the evening. Period.
Good luck to you. Hang in there.
-------------------- Be Well Posts: 103 | From Out West | Registered: Jan 2009
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Hi, Mo -
Perhaps you are already familiar with Dr. Daniel Amen if your son had a SPECT scan?..... if not, I highly recommend that you check your local library to see if they have any of his books or DVDs. He's the one that really got the whole SPECT scan/brain function analysis thing off and running, though he was ridiculed for it in the beginning. PBS has been running some of his live seminars lately for their fund drive.
He has become VERY involved in natural methods and substances to treat brain dysfunctions based on where and what type of abnormalities are seen in the brain on the scans. He began by using various drugs years ago, but has evolved to the point that drugs are the last resort in his practice.
If you are looking for some ideas, I would start with this man, especially if you can find and review some of his materials for free. He has spent most of his adult life studying this very thing. I can't remember the name of his website, but I'm sure you can Google his name and find something.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Hi, Mo -
Perhaps you are already familiar with Dr. Daniel Amen if your son had a SPECT scan?..... if not, I highly recommend that you check your local library to see if they have any of his books or DVDs. He's the one that really got the whole SPECT scan/brain function analysis thing off and running, though he was ridiculed for it in the beginning. PBS has been running some of his live seminars lately for their fund drive.
He has become VERY involved in natural methods and substances to treat brain dysfunctions based on where and what type of abnormalities are seen in the brain on the scans. He began by using various drugs years ago, but has evolved to the point that drugs are the last resort in his practice.
If you are looking for some ideas, I would start with this man, especially if you can find and review some of his materials for free. He has spent most of his adult life studying this very thing. I can't remember the name of his website, but I'm sure you can Google his name and find something.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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posted
i've seen his seminars, tracy, but haven't ordered the book yet, which is a great idea.
the two things employed from the seminars i know have merit are fish oil (really notable help) and exercise, also can really help but the problem with focus and feeling awful is a vicious cycle that precludes keeping up with exercise on his own.
we started him on PT a few months ago, which helps, but insurance will not likely cover that open ended. this therapist understands lyme and agrees with blood-brain promoting exercise, but also used "cold laser" technology for headaches, so i'm not sure which is having the good effect.
i think if he got to the point where he would exercise at night before bed, this may help.. so i moved the exercise bike upstairs. just not really caught on yet, he feels so crappy that he won't get on it regularly...yet.
maybe amen's book has more we can use. i saw the seminar when he was in hospital, which was a terrifying time and i know i did not absorb everything i heard. i basically just ran down to the hospital with fish oil and succeeded in getting it by the docs and onto his med order, and then made sure he had PT set up when he got out. so thank for reminding me of amen, there may be more there.
thank you too, rambler, for your experiences and ideas for us to consider. i'm so sorry you contend with these symptoms as well.
mo
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
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WildCondor
Unregistered
posted
Try self hypnosis tapes, they put you to sleep. Also, benedryl, magnesium, xanax, and more aggressive doses of melatonin, hot bath and massage before bed, no caffiene etc, You might want to try Phenegran too.
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he takes magnesium, can't tolerate benadryl, xanex, or melatonin, but i'll look up the phenegran
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
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lymeparfait
Unregistered
posted
I"ve been doing the rife recently and been sleeping for the first time through the night with no supplements.
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Dear Mo,
The meds he's on would eat up the B vitamins and tend to cause an inability to stop thinking, making him fixated on figuring on things.
Some B Complex and B 1 could help a LOT with this, and help, eventually, to taper off some of the psychotropic drugs. These, although they may palliate some sympoms now, can cause very serious long-term effects, including 10% brain atrophy and stunted growth.
I personally would be up all night much more often without the B Complex and 300 mg of B 1 before bed! Sometimes, I have to get up and take another B 1, and that usually does it!
A more natural B Complex source than tablets is Brewer's Yeast. It tastes AWFUL (until you get used to it, and then, because it works so well, start craving it!!!!), but works wonders. I havbe actually cured people of hangovers--when they also stayed up all night--so they could function, with one slug of brewer's yeast in milk (with some flavoring).
Unfortunately, both my son and my husband are allergic to brewer's yeast, so I know that can happen. Ugh.
Anyway, I'm hoping for the best for you and your child.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Dear Mo,
I just came across this info on insomnia while linking to another site from a post here at Lymenet.
I haven't tried this product, but I thought you'd want to have the data.
More Help for Insomnia Insomnia is a major problem--especially for those with CFS and fibromyalgia. The sleeping problem is often triggered by your sleep center (the hypothalamus) not working. When this happens, it can cause your adrenal stress hormone to be low during the day (when it should be high), and high at night (when it should be low so you can sleep). This can cause you to feel "brain foggy" all day--and wide awake with a racing mind when it's bedtime.
We've discussed many natural and prescription treatments that help insomnia. There is now an exciting new natural remedy for sleep that has been shown to lower bedtime cortisol/adrenal stress hormone levels by 40% (while leaving them OK during the day when you need them). This product works beautifully in some folks and not at all in others (depends on whether your insomnia is caused by high night time cortisol or other causes). It often works quickly (the first night) and you will certainly know if it is helpful by the time you finish one bottle. It can be used along with any natural or prescription sleep treatments.
It is called "Sleep Tonight!" (by Enzymatic Therapy) and can be found in most health food stores and also on our website. Take 1 or 2 at bedtime.
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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posted
thank you cass, for your insight and i will definitely look into both ideas.
mo
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Mo, pm sent .lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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