Dawn in VA
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I think I remember that GABA itself does, right? Wrong? Ack. But gabapentin (neurontin) does not act on same receptors as GABA does... does it make a difference regarding inflammatory processes?
And what about benzos?
If it does decrease inflammation, does anyone know what markers it lowers (ILs, TNF, etc.)?
I know neurontin is given for neuropathic pain; has anyone had it help with musculoskeletal pain that is not neuro-derived (like collagen damage from Bb)? Having so much joint pain. Was not bad for a few months, but now is ba-ack in full force.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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I read that it can wreak havoc on the emotional state- not going there...
I was told that it can help for migraine prevention, insomnia- if taken at night, as well as nerve pain.
Anyone? Anyone?
I really need some help with pain management, but I'm leary of this stuff. Input would be awesome.
-------------------- Be Well Posts: 103 | From Out West | Registered: Jan 2009
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lymeHerx001
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posted
no
Posts: 2905 | From New England | Registered: Sep 2004
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Dawn in VA
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Member # 9693
posted
Rambler, many docs prescribe neurontin for all three things you mentioned. I took it eons ago for something else entirely and did not find any problems with emotions. I know several people who are on it from diabetes-related neuropathy and, as far as I know, have not experienced emotional side effects from it. Just my small fishbowl of info, though. Maybe a web search would bring up more info?
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Keebler
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posted
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About Gabapenetin: t made me incredibly dizzy, weak and nauseated. I tried several times over a couple years and each time, had the same horrible reaction. My mood also took a huge dive and by day three (with each separate trial) I was nearly that suicidal zone.
Partly, that was due to the increased vertigo and nausea, however, just as with melatonin for me, there seemed to be a distinct depressive nature to Gabapentin. And, well, it IS a central nervous system DEPRESSANT, that is how it works to slow seizures (for some people other than for myself).
I was taking it to decrease seizures but it actually increased them. I fell several times and injured myself due to the effects on my inner ear. From those effects on my ears, it seems to me that Gabapentin might have actually INCREASED inflammation.
It is processed through the kidneys, not so much the liver, so I thought it might work and was very sad when even VERY TINY AMOUNTS really knocked me out.
Benzos really knock me out, too. They are very hard on the liver and, in fact, can ADD to pain by increasing porphyrins in those who have diminished function of the Cytochrome P-450 liver detox pathway.
I have also tried GABA supplements, tiny amounts, and the same horrible reactions clobbered me - exactly as with Gabapentin. In THEORY, GABA is supposed to calm but there is something very wrong with how it works in my body.
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MAGNESIUM and FISH OIL, however, do a wonderful job for me to decrease pain and also decrease seizures. I take about 1,000 mg a magnesium a day and a couple TBS of fish oil (when I can afford that).
B-vitamins, too, help decrease pain as they nourish the nerve fibers.
Look up magnesium at PubMed and cross search it with every symptom you have. It will show that magnesium can help with just about anything. Seriously.
Vitamin Research Products (do article search): www.vrp.com
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A gluten-free diet is also extremely helpful. I would not be able to live with pain were I to eat even one slice of bread, that is how serious a reaction I get from wheat. Even my soy sauce has to be wheat-free Tamari.
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[ 06-24-2009, 01:16 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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linky123
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I used it until recently for headaches, pain and sleep.
It helped all of the above but aggravates my asthma.
Shortness of breath is a side effect for some.
Linky
Posts: 2607 | From Hooterville | Registered: Apr 2009
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I think I better stay away from it, too. I don't know-
I am wondering about seizures, to be honest. I've been having dizzy spells and my eyes are going bonkers and don't want to focus on anything.
I realized that juggling was making me dizzy and then (this is hard to explain) that my body was doing wierd things -like suddendly not being able to use both arms in tandem with each other. My juggling pattern literally gets warped.
It's kinda like being drunk and having to close one eye in order to be able to see and knowing that you are walking at a tilt.
It's gotten bad enough that I don't always feel safe driving- my depth perception is way off. Comes and goes.
Just the Lyme, I presume...
No seriously- I am concerned about it. But who should I ask about it? It's inner ear and eye stuff, I think.
Fish oil, magnesium, milk thistle, B's, C's, probiotics up the wazoo, gosh, what else??
I'm sleeping a tiny bit better and now this is happening!
Thanks
-------------------- Be Well Posts: 103 | From Out West | Registered: Jan 2009
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posted
I've been taking it daily for over a year, it is a lifesaver. Probably the best medication I ever took.
I just take a low dosages 1-2 times a day so it's good and I have no side-effects.
Posts: 80 | From Canada | Registered: Mar 2009
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Keebler
Honored Contributor (25K+ posts)
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posted
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Selection,
Just curious since you do so well with this. Do you have any inner ear stuff going on such as any sort of vertigo, etc?
Perhaps those who don't do well with it are those with inner ear stuff. I do know that vestibular patients are instructed to avoid anything that is sedating due to the inability of the inner ear to work correctly and compensate.
And, Selection, in general, do you have an chemical sensitivities? (Although Gabapentin in very high doses has been used as a treatment for MCS, multiple chemical sensitivities).
I just like to understand some of the things that make a medicine work very well for some and not at all for others.
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Rambler,
since individual reactions vary, I recommend that you give it a try, very low dose, on a day when you can be low key.
However, if just to lower inflammation, I'm confused. There are so many other splendid ways to lower inflammation. Have you done all those? High magnesium, fish oil, curcumin, etc.
Gabapentin is usually to lessen pain from neurological processes. It depresses the nervous system, not so much actually decreasing inflammation but chemically altering brain pain receptors to achieve relief.
Some of your other questions can be answered here:
posted
I've been taking it for over 7 yrs - never had a single problem with it. I've never heard of it playing havoc with emotions - response to pain is an emotion I can do without.
It doesn't help joint or musculoskeletal pain (for me) but more with the burning-type pain.
Don't know if it lowers the pro-inflammatory cytokines you mentioned. Great drug.
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charlie
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I did fine with neurontin, 300 mg an hour before bedtime gave me enough relief from burning feet to let me get a night's sleep.
No side effects at all that I could notice.
Posts: 2804 | From Texas | Registered: Oct 2000
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btmb03
Unregistered
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Oh - I was told by a CFS doc it actually increases the seizure threshold not lowers it!
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Just curious since you do so well with this. Do you have any inner ear stuff going on such as any sort of vertigo, etc?
Perhaps those who don't do well with it are those with inner ear stuff. I do know that vestibular patients are instructed to avoid anything that is sedating due to the inability of the inner ear to work correctly and compensate.
And, Selection, in general, do you have an chemical sensitivities? (Although Gabapentin in very high doses has been used as a treatment for MCS, multiple chemical sensitivities).
I just like to understand some of the things that make a medicine work very well for some and not at all for others.
No vertigo or inner ear problems.
I do have pretty severe chemical sensitivies, why do you ask? I'm being helped by NAET though.
Posts: 80 | From Canada | Registered: Mar 2009
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Keebler
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Member # 12673
posted
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Selection,
I ask because I want to understand why some do fine with drugs that others don't.
As far as I can tell in my experiences, three of the most common reasons for different experiences are: 1) inner ear weakness, 2) a weak liver, and 3) MCS (chemical sensitives - which can be related to the liver but it's more complex than that).
I'm just perplexed when someone says a drug is fabulous for them but, to my, it's like Kryptonite. Understanding helps me curb my advice based solely on my own experiences.
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Dawn,
Oh, also wanted to mention that a gluten-free diet has helped a great deal as anti-inflammatory. Avoiding dairy, too.
Ginger capsules lower inflammation. Eating a lot of Turmeric and Cumin with your legumes, too.
I wasn't specifically looking for an anti-inflamitory, but that's not such a bad idea.
I am still trying to figure out what all is going on. There are a lot of parts to this picture.
I wonder what is what- drug induced, lyme induced, food... head injuries...
My joints are giving me hell. My hands, feet and knees are knobby, thick, stiff and sore. I am developing knobs on the joints up into my foot and it feels like I am stepping on a marble.
With the swelling of the hands and fingers, comes the carpal tunnel-like symptoms. Knumbness and ktingning.
Ok, then there's the pain, cramps, burning, itching, and creepy crawly skin.
Not to mention the complete package of mental health upheaval and cognitive breakdown.
I am totally a vestibular patient! From day one. So, there's all that too.
I'm covering the bases pretty well in terms of supplements and avoid a bunch of foods I am sensitive to. Wheat and Yeast are at the top of the list and I've been tested for celiac, but I don't seem to show specific probs with gluten. I eat rye and that's it, in terms of gluten bearing foods. I should just give that up too and see what happens.
I seem to be rediculously sensitive to drugs, so I am leary of taking something that is known to cause these probs.
The rifampin and biaxin tossed my antidepressant into the garbage disposal and left me in the fith dimension of hell without a paddle!
I'm fairly stable at the moment, but the pharmacist told me I can expect a repeat performance as those abx go out in Aug. I feel like I should wait until the ground stops shaking, you know?
I use ibu occasionally, but it's like candy I've eaten too much of- I'm sick of it.
Plain old asprin can help with certain kinds of headaches, but I don't guess I've used it as a full-on pain reliever.
There's arnica rub (I can't take the oral), and a poplar bud cream that helps my hands.
I've got valium and ativan that I don't want to have to take. The valium was prescribed for pain, because opiates make me very ill. I did take it out of desperation one day when my back pain was unbearable. I guess it helped. It for sure knocked out my brain, if not the pain...
I tried ultram for the back pain once and ended up with a blinding migraine as a result. What fun.
I can't get consistant relief from the migraines, either!
I just keep getting up and going. Teetering down the path like a drunken sailor.
I will put gabapentin on the back shelf for now. I like the idea of loosing the nerve pain, though.
I've got a bottle of ambien on the nightstand and so far, that's all the closer I need to get to it!! I've been getting through the night pretty well ever since, which cracks me up. I'm so sensitive, I don't even have to take the drug- I'm getting the homeopathic dose from 2 feet away! Good grief.
Thanks for any input, folks!
-------------------- Be Well Posts: 103 | From Out West | Registered: Jan 2009
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Keebler
Honored Contributor (25K+ posts)
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posted
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btmb03 says: "Oh - I was told by a CFS doc it actually increases the seizure threshold not lowers it!"
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That may be in the laboratory - or for others. However, in my case - it definitely caused me far more seizures. I tired it several times over several years with the same reaction.
In my case, vertigo and other inner ear symptoms are the first in line for my seizure triggers. Anything that messes with my inner ear also then lowers the threshold for seizures. For those whose seizures are not connected to the switch in the inner ear, this may not be the case.
In fact, I've talked to several people who did exceedingly better with Gabapentin than with any of the other anti-seizure drugs. None of them had inner ear dysfunction, but some had the sensitivities to chemicals and Gabapentin HELPED them with that.
I also spoke with a few people who had inner ear conditions and they, too, did not do well with this. So, that seems to be part of the puzzle. Still, it is work a try if 1,000 - 2,000 mg of magnesium and 1-2 TBS of fish oil are not enough.
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Rambler,
You might give Gabapentin a try. It might work for you. All I'm saying is that you would want to start it low dose on a day when you don't have to drive the next and when you could afford to lie down if you had to - and allow for a getting used-to-it time frame, too. There have been plenty of positive reports here. You may well have a positive experience.
With or without that, though, I did not notice magnesium as the things you've done for pain relief? Just wondering. Or B-vitamins? Fish oil? How do those work for you? They generally help nerve pain.
Unfortunately, rye has just as much gluten as wheat. Even a trace of gluten (say, in soy sauce) can trigger the reactions. If you did the endoscope test for celiac, did you eat a couple pieces of bread a day for several weeks prior? That is important as, otherwise, the test may not be accurate. Food allergy tests do not work for determining celiac but some genetic blood tests are helpful.
Rambler, for the ambien on your nightstand, you might want to look over the safety guidelines for that so that you can also plan around driving, etc:
I didn't load up on gluten before the endoscopy- didn't know.
I know wheat and yeast get me big time and that I feel better when I behave. I'll work on escorting the rest of those grains out. Sheesh.
I am back on the fish oil- I couldn't tolerate it for while there and took flax instead. I do feel better on it when my stomach can handle it.
I'm taking magnesium (600mg), but what would you consider a high dose?
I take methylcobalamin (B12) and a B complex, and it does help some. My hands get tingly when I go off the Bs.
I usually drink an Emergen-C or two during the day and I have been drinking tonic with a little blueberry juice and lime. I wonder how I can still have cramps!
My eyes are giving me fits. I'm getting dizzy again.
I have a confession to make, though- I got smacked on the boney knob behind my left ear by a large object about 10 days ago. It was another freak accident involving my already overly bashed skull. I shouldn't even walk outside without a helmet. Honestly.
I have an appointment at the neighborhood clinic today and will initiate discussion about that little issue.
I've been way more woozy ever since. I start the day OK, but then after a few hours of using my eyes, I'm getting dizzy and can't focus.
I don't know what to think.
-------------------- Be Well Posts: 103 | From Out West | Registered: Jan 2009
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Keebler
Honored Contributor (25K+ posts)
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posted
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Getting hit in the head certainly does not help. Be sure to talk to your doctor about that - and you may need aggressive rest - that is AFTER you see the doctor about this.
Ginger usually helps vertigo if from inner ear stuff but I don't know if it would help in the case of trauma. It can't hurt, though, and your doctor may have more advice on that.
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If your bowels can handle it, you can go to 2,000 mg a day in divided doses. I do best at about 1,000 - 1,500 mg and with July 4th around the corner will be getting back up there to guard against startles from fire-crackers.
Calcium has to be increased, too, in proportion but I've dropped the ball on that and don't know if you take that at the same time or different time. Certain greens are good but other greens actually prevent calcuim absorption. Too tired to go there now,though.
I just came back to post some more links that may just answer all the question you have every had about pain and inflammation (although these are not specific to lyme):
-------------------- Be Well Posts: 103 | From Out West | Registered: Jan 2009
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Dawn in VA
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posted
I had severe, severe disabling vertigo with many balance-related nerve conduction tests coming back wacky for many years b/f "the" tick bite in 2006. I was put on neurontin way back in 99 but it did not help with the vertigo. FF to 2006- after PICC line and heavy orals following, my dizziness/vertigo is much better than it used to be. Reckon it may have been lyme all those years. I was a wildlife ecologist for a couple of years and pulled ticks off left and right, but never thought much about it till '06 when I went downhill so fast immediately following that particular tick bite.
I'm going to ask my doc about going back on neurontin just to see what might happen with my neck and back spasms and pain.
Yessiree, I have been on tons of Mg and do methyl B-12 shots every other day. Both have been good for my muscle twitches, but have not done anything for my current cervical problems.
I do remember reading that gabapentin does have an anti-inflammatory effect somehow, but can't recall where or what the mechanism of action is. It was not just neuropathy-related, it was something deeper than that. Darn it, I can't remember.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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