After 2 years, I was tired of Minnesota LLMDs who didn't really know what they were doing, so I finally went & saw Dr. J for the first time last week.
Dr. J & PA want to try to get my sleep problem fixed (or at least better) before they put me back on new abx. Sleep is my BIGGEST problem, by far. One of the sleep meds they prescribed was Neurontin.
What are your experiences w/ Neurontin?? Some of the things you read about Neurontin online are scary...
Thanks, JenniferMN
Posted by Keebler (Member # 12673) on :
- Some seem to manage this okay, some even very well (but start at a very low dose when you have nothing planned for the next day.
Do NOT DRIVE until you see how this affects you. Do not plan to drive the day after you start this. And be careful walking. Stay away from the curb when waiting to cross the street.
This can affect balance.
. .. while it can devaste and damage others. It's just such an individual thing.
I tried it as an anti-seizure medication since most others are so hard on the liver. This is processed by kidneys.
Not good for me, though. Terrible effects. I tried several different times, over many months with a very low dose.
Vertigo, dizziness, severe weakness of leg muscles caused more falls. Instant depression, too, to a dangerous level. More intense and frequent seizures, too.
It depends on how well your kidneys might tolerate it. It can impair some kidneys. And we already have a tough load for kidneys & liver, so, it just seems best to avoid all that can tax either one.
If you are taking it just for sleep, I think that's an unnecessary risk as there are far safer avenues to explore.
If a goal of pain relief was also part of the reason for this choice, there are also other things that may work more safely.
Topic: NATURAL SLEEP & ADRENAL SUPPORT -
Posted by Keebler (Member # 12673) on :
- Stress on liver or kidneys can also cause sleep troubles. Liver & Kidney Support helps sleep.
If you do decide to try Neurontin, be sure to avoid anything else that is hard on kidneys, especially ibuprofen (as that can cause blood vessels in the kidneys to constrict, and cause damage). Detail about that here:
Shixiao San, Jin Lingzi San, Liang Fu Wan, and Baishao Gancao Tang
by Subhuti Dharmananda, Ph.D., Director, Institute for Traditional Medicine, Portland, Oregon
excerpt:
. . . Corydalis is added "to increase the pain-relieving effects of this prescription."
To compare Shixiao San and Jin Lingzi San, it is helpful to examine two of the main ingredients. Yang Yifan (9) compares corydalis to trogopterus (wulingzhi):
Corydalis and trogopterus enter the liver and spleen meridians. Both are able to promote blood circulation and remove congealed blood. They are very effective for relieving pain.
This is an excellent formula, intended for use before going to bed (follow instructions and caution with driving until you get used to it. Do not mix with sedative or alcohol).
Ingredients; Corydalis root, jujube seeds and Schisandra fruit.
Jujube is also called zizyphus. Schisandra is also spelled schizandra. Both can be searched at PubMed and at The One Earth Herbal Sourcebook ( http://oneearthherbs.squarespace.com )
Corydalis & Angelica -
Posted by JenniferMN (Member # 29920) on :
Keebler...
OMG!!
Thank you so much for telling me this stuff about Neurontin! I've never had a seizure, just severe non-restorative sleep ( I don't get anything out of my sleep & I often wake up a lot).
Those side affects are SO serious!!
There is no way I'm going to take this stuff. It amazes me the ease w/ which doctors & PA's will prescribe this stuff!
They also prescribed me Lamictal, Clonazepan, & Trazadone. So, I guess I'll just try those...
This seems like a lot of stuff to be taking all at once...
But, I'm NOT even going to try the Neurontin.
Thanks for warning me Keebler!!
JenniferMN
Posted by Keebler (Member # 12673) on :
- Some of the same cautions with each of the other things you listed. Sorry. I do not intend to alarm but I had serious troubles with all of those (except I've never taken Lamictal). They can really hit the liver hard.
Others, of course, have varying levels of results. If you try those, only ONE at a TIME. VERY LOW DOSE. Do not plan to drive the next day.
Have you been able to try other methods? Melatonin, etc. Things in the sleep thread? Corydalis?
If you have tried all the safer methods, good sleep hygiene and nothing else helps, then I can see trying a Rx. But it can be a rabbit hole.
A low dose of Clonazepam might be the best start to address the sleep issue - if you have to take the Rx route.
Be sure to also take Liver support at a different time.
Lithium Orotate is much better & safer, IMO, and that helps address some of the same issues as Clonazepam. -
Posted by JenniferMN (Member # 29920) on :
Thanks Keebler,
Yea, I'm going to have to take more Magnesium. I'm not taking enough.
Plus, I have a white tongue from all the Flagyl, Ceftin, Zith, Doxy, Biaxin, & Plaquenil I've taken over the past 2 years.
Diflucan will get rid of the yeast, right? I'll have to get a Diflucan prescription.
I will look into the CORYDALIS & natural herb remedies you list for sleep.
Thanks again, Keebler! Jennifer
Posted by JenniferMN (Member # 29920) on :
Keebler,
I've tried Melatonin.
But, not CORYDALIS. I'll try that, first.
If that doesn't work, I'll try some of these prescriptions, but one at a time & NOT Neurontin.
Jennifer
Posted by Keebler (Member # 12673) on :
- Gotta rest now but will be back with a couple more links to answer your quesxtions.
There is a good LL ND in MN, somewhere. Might you be able to go. Contact the MN state Lyme group. -
Posted by Keebler (Member # 12673) on :
Articles -
Posted by Keebler (Member # 12673) on :
- I'm stuck in my closet a little long so will try to finish my thoughts. Leaf blowers are upon the building right now. My closet "den" is my refuge.
Melatonin does not work for me, either (and will drop mood like a rock by day 3 in my case).
It does work great for many, though since you've tried it and it did not seem to help there are many other options. Just be sure that you did not try too high of a dose. It requires a low dose and often what is sold is too high.
Seven Forests Fu Shen and also their
Zizyphus formula is also excellent. I think that is in the sleep thread. I know of one LLMD who is also suggesting those. -
Posted by Keebler (Member # 12673) on :
- From CarolinPA's past posts: ---------------------------
There are some good brand of liquid magnesium. Cardiovascular Research (brown glass bottle) is one.
If you buy liquid (anything) it's best in GLASS rather than plastic.
Magnesium citrate (as in NaturalCalm power you put in water) is best 3 x a day.
Some like magnesium glycinate better. Citrate and Glycinate have slightly different effects so if one causes too loose bowels, switch to the other form.
Never take the full day's dose of magnesium at one time as that can stress the kidneys. It should always be taken 2 - 3 times a day and,
yes, on a daily basis. Magnesium helps the liver, helps nerve fibers . . . and so much more. It's one of the best support supplements for lyme treatment.
You would take it to bowel tolerance, some take about 200 mg 3 x a day -- but many do better with up to 1,000 mg - or even 2,000 mg a day (especially those with neurological issues).
Take up to the point of loose bowels and then back down a bit.
Calcium and other minerals need to be in balance, too. Hopefully, your LLMD has advice on brands.
Magnesium Glycinate choices -
Posted by Judie (Member # 38323) on :
"Clonazepan, & Trazadone"
Gosh, those are anti-anxiety meds. A doc prescribed those to be because of a rash once (he thought it might be mental, but it was an allergic reaction, the idiot).
Instead, I flipped out on those meds. It caused me to be in a trance state all the time and I put myself in situations I wouldn't normally be in.
My therapist noticed my odd behavior and got me off them.
I wouldn't plan to leave your house until you know how you react to these meds.
They messed with the reasoning center of my brain when I was on them. If you live with someone, I'd ask them to observe you for a few days to make sure you're still acting like yourself.
By the way, they did NOTHING for the rashes.
Good luck!
Ambien worked for me when all else failed when I had sleep problems (don't substitute generic).
Posted by Ellen101 (Member # 35432) on :
I was prescribed neurontin but my LLNP for nerve pain. I could not tolerate it during the day as it made me too tired. I occasion take it St night for pain. It does not change the way I sleep. I still wake every 2hours with or without it.
As far as side effects, yes there are dome. But it is important yo remember that every drug as them. Whether or not you will suffer them depends on the individual. Just look at all the side effects listed on the printouts for some of the meds we are taking for Lyme.
If your taking it solely for sleep issues then I would definitely look for an alternative. But neurontin can definitely be a lifesaver for some. When I was hit with a bad case of trigeminal neuralgia yrsago it was the only Med that touched the pain. It also works great for the debilitating pain from shingles.
Posted by lax mom (Member # 38743) on :
If you look up the side effects of any drug it will scare you to death.
Most of the side effects won't happen to you. If there's a problem, just stop the med.
Posted by LymeCFIDSMCS (Member # 13573) on :
I think it's a really mixed bag. It can make people suicidal, but at really high doses one doctor actually found it to be curative for some ME/CFS patients who had been sick a very long time (a Dr. S. in Texas). So it does seem to have neuroprotective effects.
I think like a lot of meds it depends on one's ability to detox (it is processed mainly through the kidneys I think so kidney support seems helpful).
Posted by Lymetoo (Member # 743) on :
Too much fear mongering here.
I have taken trazodone for sleep for many years. It really helps.
I've also taken neurontin in the past. I need it now for nerve pain but it makes me retain fluid. So it's a no-go.
Getting rid of yeast WILL help you sleep better, that I know for sure.
Clean up your diet too!
Posted by desertwind (Member # 25256) on :
I agree with Lymetoo.
Neurontin IS an anti-epileptic/seizure medication so only in very rare occasions will someone have a paradoxial reaction to it such as a seizure.
If you are taking it for controlling sezuires and you stop abruptly, then you run the risk of having a problem.
Every med has potentially dangerous side effects - some more then others. If we were to look at ALL the side effects of the meds we take for TBI it would freak us out as well!
I HATE taking meds.....But even so, there are some things that need the help of medication. For me that was nerve pain... Neurontin helped so much when my nerve pain was out of control.
It also helped me to sleep even at a small dose of 100-200 mgs. Just don't write if off so quickly because it may be of benefit to you!
Posted by Keebler (Member # 12673) on :
- In my case, it lowered the seizure threshold because of the inner ear involvement with seizures.
Many with seizures do not have that vestibular system tied to the "seizure trigger" but for those who do, and if Neurontin causes them worsenedd vertigo or dizziness, then that can also lower the seizure threshold.
If not, all may be okay. -
Posted by desertwind (Member # 25256) on :
Keebler; Have you found that ANY medication that effects your inner ear and/or causes vertigo or dizziness lowers your threshold? Just curious about Zythro. type meds..
Posted by randibear (Member # 11290) on :
jennifer, go to "askapatient.com". it's a valuable research tool when trying to find side effects.
just type in the drug at the top and it gives you a listing of people's comments, dosages, etc.
Posted by Keebler (Member # 12673) on :
- desertwind,
Discuss with your LLMD. Those with lyme are often affected in ways that the "normal" population is not.
EVERY medication that affects my inner ear (or causes vertigo / dizziness) has also lowered the seizure threshold for me. My body seems to be short circuited.
I take zero pharmaceuticals for that reason. I just do better that way. I could not tolerate zithromax / azithromycin or any of the others.
Part of that could be due to my liver & porphyria, too. But when any dizziness or vertigo gets warms up, that threshold seems to go haywire, too.
However, there are some here who improve with a full force protocol under an expert LLMD.
Lyme has to be adequately addressed - somehow. In no way do I want to disuade anyone from proper treatment. But I always want to help prepare anyone who may have a body like mine.
For those who can tolerate pharmacuetical treatments (of course, with added liver support), they can have great success getting the CAUSE of all the trouble. And then the inner ear mess can just melt away (for some).
It is hard to answer honestly - for my case - without the chance of also messing up others' confusion about their protocols. There are just so many individual variations. Still, for those with inner ear challenges, many questions are addressed here: