Getting Off All Meds For Gbs?

Hi Hedley,

I’m 20 years post GBS and haven’t consistently taken medication for parethesia/GBS residuals. When I was first diagnosed and in the hospital and the rehab facility, I took Elavil. Shortly after I was released, I stopped taking anything as I didn’t feel my level of the numbness, burning, etc., warranted daily medication. I tried Lyrica for a month or so almost 3 years ago as I had a flare-up of sorts. Again, the benefits (for me) didn’t outweigh the issues I had while taking daily medication. Plus, I have other health concerns and try to avoid medication, though that isn’t always possible.

When the burning pain is too much or the numbness too annoying, I usually take 1/2 of a 5mg Valium or Tramadol (depending on what I have handy).

Hope this helps!!.

Hi all –

Here’s my 2 cents on this. I was dx’ed on March 18, 2005 and spent the first 6 weeks in a coma (w/ vent) and the next 6 weeks in a rehab but was able to walk within another 3 months. I continue to have parasthesia (pain and numbness) in both feet and my right hand (and yes that was my dominant hand before). I tried most of the ‘solutions’ that get mentioned on the board. Was on gabapentin for a while with no relief and then lyrica (no relief either) until I finally realized that I had both side effects of weight gain and increased appetite, and I didn’t need either one of those side affects. I have also been on a dose of percocet (5/325 x3 / day) to take the edge off and help with the pain. A few months back I reiterated something I’d said before to him that either I needed more percocet or none. Doesn’t take a genius to figure out what he said and what I knew. I miss the ‘perceived’ relief when taking it, but am probably better accepting the constant low to mid-level pain all the time. I did think it funny that my doctor used an analogy of, if a cat got hurt, it would just learn to deal with it! At some levels it made sense and yet I had so many snide replies that I had to suppress.

I think it’s probably for the best. Wish I could also get off the coumadin which I’m on due to the fact that I had 2 blood clots in the ICU and then that left me with chronic venous insuffuciency (CVI). Which means the blood flows down, but not so well back up. So i’m left with bloated legs and feelings of fatigue (at least that fatigue can keep my nerve fatigue company) and it add to my feeling cold due to thinner blood.

Ohh well, good luck with your progress!

Mike

Sorry – also meant to add that I was on Lyrica and I think that may have been the one with the side affects. I don’t ever believe I got any pain comfort from either drug.

Hi All: I was on the max dose of neurontin and a good dose of oxycontin for years for parasthesia but finally got so many side-effects, such as constant sleepiness, I got off everything. But, especially at night, the pain of the burning is so awful I had to take something, so I use medical marijuana. Within ten minutes of taking it all the pain is gone. My pain is only bad in the late afternoon or at night unless I am on my feet too long so I only take it at night. I have no side-effects and relief for 12-15 hours. I have done some research and pot is noted for it effects on parasthesia and neuropathy. It definitely works for me. Jeff

It’s possible for the two (pain and paresthesia) overlap. There are times when the numbness and tingling feels painful. If possible, I try to “wait it out” or “slap the feeling” back into that body part. Sometimes it works, other times it doesn’t.

When the burning in my feet is painful, although that may also be considered paresthesia, I will take something for it. So, I guess it’s how each individual defines pain/numbness/paresthesia.

I hope you’re able to find relief and answers to your questions.

Take care!

Tina

[QUOTE=jeff]…..so I use medical marijuana. Within ten minutes of taking it all the pain is gone. My pain is only bad in the late afternoon or at night unless I am on my feet too long so I only take it at night. I have no side-effects and relief for 12-15 hours. I have done some research and pot is noted for it effects on parasthesia and neuropathy. It definitely works for me. Jeff[/QUOTE]

Jeff, I’d ask you to share “that there” medical stuff, but I simply cannot afford the munchies, especially at night!! 😀

I am weaning off lyrica. I’m finding that I’m getting more tingling and shooting pains, especially in my hands which still suffer the worst. But I have missed my dose before, in the evening and I am amazed what being without it can be like. Insomnia, shakes, all kinds of nonsense. I know it’s poison, I want off.

Jeff, like you I use pot. It is what works for me, though I try not smoke it. I do believe that option is not good for me, somewhat zaps my initiative. I find through vaporization, my pain and tingling at least become just numb and sometimes the effect is strong enough to put symptoms off my mind. Makes Woody Allen movies seem funnier as well. However, the shortness of breath is not as severe. I recognized this because I was off the vapor while my machine was being repaired and I was more labored at PT or the fitness center. Since I got the vaporizer back, I have had more wind and I don’t consume anywhere as much.

Try to tell this to my GP, neuros and they wont even hear of it. They suggest they scratch out a prescription for percs, oxy, lyrica, gaba-whatever, I’m sick of it. I see what it does to people, makes them zombies. The percs and oxy are basically [I]synthetic[/I] heroin, not even the real stuff. I have no idea what factory the stuff was pumped out of, but I know where my painkiller came from-the earth, no chemicals, compost for fertilizer.

And yet, to ease my pain, I’m a criminal. It’s an attack on liberty.

Yes the burning in my feet, whatever you call it, is among the worst pain I have experienced, and it has never gotten better. So the marijuana is a life saver. I too use the vaporizer and would never smoke it as that can be as bad as smoking cigarettes. The oxycontin and neurontin together did turn me into a zombie for several years and I didn’t even realize it until I had to get off them because of side effects. It was as if I had come back to life. It is a hard choice to take the pain or the meds but I was fortunate to find a natural alternative. Jeff

[QUOTE=jeff]Yes the burning in my feet, whatever you call it, is among the worst pain I have experienced, and it has never gotten better. So the marijuana is a life saver. I too use the vaporizer and would never smoke it as that can be as bad as smoking cigarettes. The oxycontin and neurontin together did turn me into a zombie for several years and I didn’t even realize it until I had to get off them because of side effects. It was as if I had come back to life. It is a hard choice to take the pain or the meds but I was fortunate to find a natural alternative. Jeff[/QUOTE]
This makes me furious with the medical establishment. Here we have a natural medicine that works for us, yet doctors can’t see past the pharmaceutical companies. They are quite happy to prescribe garbage that is poisonous to the liver (oxy, perc, tylenol 3, etc.) but they haven’t got the guts to challenge the established order-especially now that there are cleaner delivery methods.

I guess there’s no money in letting us grow our own remedies.

It is often a misconception that doctors only push medication for their own gain . Many think they get “kick backs ” or trip to push the medication for their own personal gain . In fact , what happens is the drug reps bring in samples and when a doctor prescribes a medication a sample is often given to the patient first to see if it works ….which often keeps the patient from having to buy it when it can be expensive and may or may not work for them . Samples are also given to patients who may not be able to afford the medication to save them money . Do the drug companies gain money ? Well sure …if the medication does work for the patient then obviously they buy it to take for their medical condition . This is the case for almost anything …..it’s called marketing .
As far the “pot ” goes ….. I can’t see a doctor wanting to prescribe it or recommend it when it is illegal in most states . I am sure it may help you immediately but there are also long term affects as well ….. So they both have their drawbacks .
In my personal opinion it is about taking something legal or illegal . I guess you do whatever you think is right .

thanks for offering your perspective beachcomber, I think I’ll pass. I have seen the destructive toll that prescription pain-killers too often take. we have a methadone clinic in town to get addicts off the oxys and percs. I don’t see that for pot users……..all doctors charge a fee when prescriptions need renewing, if I don’t need them so much, they can’t levy those charges….effects of long-term use of pot are inconclusive at best and please do not go throwing up links of proven harm because I will could find studies that negate the harm, especially when vaporization and edibles are available…..vaporization is not smoking, big difference…regardless, people have been using marijuana for pain relief throughout history, that is until our gov’t decided to nanny us

Actually I have to say that it was my pain doctor, a physiatrist, who recommended the marijuana to me. He knew the prescription meds were not helping nor good for me. I did a lot of research before starting and pot has been proven in numerous studies to be effective for neuropathy. In Colorado you need a prescription for it from a doctor and it needs to be renewed yearly. I have been using it for two years and have noticed no side effects ever. Of course we must all decide what is right for own bodies but this is one alternative that could be considered. Jeff

+1, your doctor is able to see past the processed pharmaceuticals and that is a rare doc Jeff!

^^^^^^^^^^^^^^

I haven’t embraced any conspiracy theories, just observations thanks. If you don’t like our conversation, then please don’t involve yourself. Go start an ‘homage to the medical practice thread. we’re here to discuss getting away from the poisons OUR doctors are willing to peddle.

Ok GH! 😉 😉 😀

[QUOTE=jeff]Actually I have to say that it was my pain doctor, a physiatrist, who recommended the marijuana to me. He knew the prescription meds were not helping nor good for me. I did a lot of research before starting and pot has been proven in numerous studies to be effective for neuropathy. [/QUOTE]

Hey Jeff, I found this article interesting regarding the benefits of marijuana for neuropathic pain. There is a pill called Marinol (hilarious name) but of course it lacks some of the more beneficial elements such as cannabidiol. It seems ridiculous to think that one would need such silly pills, but the pharmaceutical companies and med field like to make a buck whenever they can. Should we be surprised?
[QUOTE]August 30, 2010 — Smoking cannabis reduces chronic neuropathic pain and also improves sleep, according to new research published today in the Canadian Medical Association Journal.

A single inhalation of 25 mg of 9.4% tetrahydrocannabinol herbal cannabis 3 times a day for 5 days was sufficient to achieve these outcomes, lead study author Mark A. Ware, MBBS, from McGill University Health Center, Montreal, Canada, told Medscape Medical News in an interview.

“Patients have been reporting that cannabis helps control their pain, and they have been saying so for a long time,” Dr. Ware said. “At the time that we had secured the funding and began the trial, there had been no clinical trials that had established this or investigated it.”

In addition, a large body of scientific knowledge is emerging abound the role of cannabinoid receptors and cannabinoid ligands in the human body, providing a potential scientific explanation as to why cannabinoids would be analgesic, he added. “So the 2 main supports came together, and in Canada at the time, there was an environment where we were able to secure funding sufficient for studies of this.”

Posttraumatic and Postsurgical Neuropathy

The study included 21 individuals older than 18 years (mean age, 45.4 years) with posttraumatic or postsurgical neuropathic pain lasting for at least 3 months. They were randomly assigned to receive cannabis at 4 potencies — 0%, 2.5%, 6%, and 9.4% tetrahydrocannabinol — during 4 periods in a crossover design. Each period lasted 14 days and began with 5 days of cannabis use followed by a 9-day washout period.

The cannabis doses were delivered in a single smoked inhalation using a titanium pipe. Patients self-administered the first dose of each period under supervision and were instructed to inhale for 5 seconds while the cannabis was lit, hold the smoke in their lungs for 10 seconds, and then exhale. They self-administered the remaining doses for each period at home.

The participants were allowed to continue their routine medications, and the use of acetaminophen as breakthrough analgesia was also permitted.

Pain intensity was measured using an 11-item numeric rating scale that used “no pain” and “worst pain possible” as anchors.

The study found that the higher dose of cannabis was the most efficient in reducing pain. The average daily pain intensity was 5.4 with the 9.4% tetrahydrocannabinol cannabis dose compared with 6.1 with the 0% or placebo dose (95% confidence interval, 0.02 – 1.4; P = .023).

In addition, participants reported significantly more drowsiness and reported getting to sleep more easily, faster, and with fewer periods of wakefulness when taking the 9.4% dose than when taking the 0% dose (P < .05). The higher dose also improved anxiety and depression compared with the placebo dose. Blind Held; Studies Feasible "It was feared that participants would know right away if they were smoking cannabis because of the acute psychoactive effects of the drug, but our results do not support this," Dr. Ware noted. "They do show that short-term placebo-controlled trials of smoked cannabis are feasible." He would like his study to act as a stimulus for other studies on cannabis and pain relief. "Studies of this kind can be done. Ours was difficult to do because it was the first time we had done anything like this. We were breaking new ground with regard to regulations and so on, but it is possible. Having done it once, it's not as difficult to do it again. So our results raise the possibility of extending the study for a longer duration, or being able to look at safety issues, and so on. It is possible to do a scientific trial with this compound. Your political views shouldn't matter. This is just good science," Dr. Ware said. In a related commentary, Henry J. McQuay, DM, from Balliol College, Oxford, United Kingdom, writes that the study authors should be congratulated for tackling the question of whether cannabis helps in neuropathic pain, "particularly given that the regulatory hurdles for their trial must have been a nightmare." He concludes that the study "adds to the trickle of evidence that cannabis may help some of the patients who are struggling at present." Dr. Ware has disclosed no relevant financial relationships. Dr. McQuay reports financial relationships with Reckitt Benckiser, Pfizer Data Safety and Monitoring Board, Archimedes, Esteve, Sanofi, Ratiopharm, Sandoz, and Grunenthal. He has received royalties for a textbook on the subject of pain. CMAJ. Published online August 30, 2010.[/QUOTE]

I think you guys are on to something.

Cost effective treatment with reduced risk of dependency. So many people have run into problems with benzodiazepine’s and sythetic optiates. You don’t see this kind of dependency with Marijuanna. If you are talking medium to long term use Marijuana is a much better option. I can’t speak for eating it, but if you burn one and it works for you. Fire up!!

[COLOR=”Green”][SIZE=”3″]Kevin I agree 100% I have used it for pain and also stress . I was not druggy and still function and in some cases better. The FDA knows there are benfits and most doctors do.My feelings are the drug companys do not want it legal. Also I believe keep it natural. I have problems with my clostral and did research on a natural treatment. (RED YEAST RICE) My doctor even uses it with many of his patients. I am blessed as do not have to take anything for my GBS now. (Lakoda)[/SIZE][/COLOR]

Sweaty ….
Just curious as to what type of doctor is charging you to refill your prescriptions ? You stated all doctors charge you to refill them . I personally have never had any type of doctor charge me to refill a script .
I can understand thinking a doctor is in it for the money if he charges you to do that ….. very odd .

Kimberly

I agree alot of people get hooked on Oxycontin and Percocets and other medication ( usally these are people who are not taking it as prescribed ) …..but I also think the same problem can be said for “pot” . It is the same for some prescription meds ….a person takes them for so long and that does stops providing the “high” feeling and so they need more to keep feeling they are chasing . In reading about it alot of people who get hooked on herion and other hard drugs start with either or both of these types of medications . I am not saying all do ….but it is a high percentage . Also alot of people take medications that save their life and would not be alive otherwise . I am not sure that the same could be said for “pot” . While I do understand it may have some “medicinal” values to it for some medical conditions I for one do not see any strong indications to take this over prescriptions that are legal and lifesaving .

[QUOTE=Beachcomber]Sweaty ….
Just curious as to what type of doctor is charging you to refill your prescriptions ? You stated all doctors charge you to refill them . I personally have never had any type of doctor charge me to refill a script .
I can understand thinking a doctor is in it for the money if he charges you to do that ….. very odd .

Kimberly[/QUOTE]
Doesn’t charge me, but bills medicare, insurance companies-no??

[QUOTE=Beachcomber][QUOTE]I agree alot of people get hooked on Oxycontin and Percocets and other medication ( usally these are people who are not taking it as prescribed ) [/QUOTE]

big problem, no??

[QUOTE]…..but I also think the same problem can be said for “pot” .[/QUOTE]

based on?

[QUOTE]It is the same for some prescription meds ….a person takes them for so long and that does stops providing the “high” feeling and so they need more to keep feeling they are chasing [/QUOTE]

funny I never need MORE marijuana, just enough:)

[QUOTE]. In reading about it alot of people who get hooked on herion and other hard drugs start with either or both of these types of medications . I am not saying all do ….but it is a high percentage . [/QUOTE]

hmm….the ‘gateway drug’ [U]theory[/U]…my first good high was at eight when the dentist gave me the gas…I loved it:)

[QUOTE]Also alot of people take medications that save their life and would not be alive otherwise . [/QUOTE]

agreed

[QUOTE] I am not sure that the same could be said for “pot” . While I do understand it may have some “medicinal” values to it for some medical conditions I for one do not see any strong indications to take this over prescriptions that are legal and lifesaving[/QUOTE]

based on?? I know what’s right for me, beachcomber. I figure I have another 40 yrs left on this rock. I’ve seen plenty of stoners live a long life but not many junkies. I don’t want prescription narcotics in my home or anywhere near me.

“That which can be asserted without evidence, can be dismissed without evidence.”
― Christopher Hitchens, 13 April 1949 – 15 December 2011

All these questions are easily answered …. my point is to call prescribed medications “poisons” and not view “pot” as poison seemed ironic . It is easy to find out the effects of “pot ” on an individual . But I do see your point in saying that all prescribed medications are not always good …..I am not sure I would compare the two. Also it could affect your care if your doctors know you are doing it …. delayed care could be an issue because of what is in pot should you need emergency care . Just something to think about . Sometimes it could be more harm than good . Best of luck 🙂

[QUOTE=Beachcomber]All these questions are easily answered …. my point is to call prescribed medications “poisons” and not view “pot” as poison seemed ironic . It is easy to find out the effects of “pot ” on an individual . But I do see your point in saying that all prescribed medications are not always good …..I am not sure I would compare the two. Also it could affect your care if your doctors know you are doing it …. delayed care could be an issue because of what is in pot should you need emergency care . Just something to think about . Sometimes it could be more harm than good . Best of luck :)[/QUOTE]
hey beachcomber…thanks…I’m not sure they are ‘easily’ answered and I believe this country is finally going to have a mature discussion on it and not one based on junk science……I do tell my doctors and neither seems concerned…..sorry about the hyperbole (poisons), I was on a bit of a rant, however, I know what I am putting into myself with my medicine, but have no idea what the ‘others’ are. Mine grows in the sun, fed by rainwater and natural compost. The pills are made in some factory using synthetics. Research is piling up negating the negative effects of marijuana (Reefer Madness) while the number of people addicted to percs rises daily. And where I do agree is the more harm than good comment, however with a caveat. I have no doubt the dangers of inhaling smoke and I do go out of my way to avoid smoking. But as evidence of the benefits of natural THC and cannibinaoids for pain increases I don’t think it can be ignored when it can be consumed with a minimum of carcinogens.

I will take your wish for good luck as a willingness to keep an open mind about it. I Do not recommend venturing out to find it if one has no experience. While our laws remain retarded (not for long if Ron Paul becomes the GOP nominee) there are still legal risks. Time for us to come out of our caves.

Best of luck to you too

It is an interesting discussion. In Colorado medical marijuana is legal according to the state and the doctors I work with know about my use and are fine with it. I hope more testing goes on because I am confident that tests will bear out the medical uses of marijuana-I know it works for me and several other friends who use it for a variety of medical conditions. As for emergency care I have gone to the emergency room and told them I used pot that night and it made no difference.
As for prescribed meds it all depends on the meds and the need. I have autoimmune recurrent pericarditis and the only thing keeping me well is prednisone-a pretty nasty med but it works wonders for me. So I use it, even though it causes side-effects for which I must take another medication. Pot won’t help me with pericarditis. We all have to decide what is best for our own bodies, keep an open mind and choose well. The best of course is to not need anything, but that is anoption that won’t work for many of us. Jeff

thank you all for some helpful resources(jeff). have been thinking about it. but I’m not sure about this for me?????
I guess I’m just tired of the pain.

yes, I could only imagine…. I’m sure it would work well:)

Hedley,

I think it is awesome you want to get off all meds.

Don’t get off course by the marijuana messages. What you are trying to do is a positve. The less synthetic stuff we put in our bodies the better off we are in my opinion. It helps us establish a baseline of where we are at. Marijuana is a valid alternative but if it’s not right for you for any reason that is Ok. Just health
y discussion.

Take care and good healing!

Kevin

[QUOTE=kevin2010]Hedley,

I think it is awesome you want to get off all meds.

Don’t get off course by the marijuana messages. What you are trying to do is a positve. The less synthetic stuff we put in our bodies the better off we are in my opinion. It helps us establish a baseline of where we are at. Marijuana is a valid alternative but if it’s not right for you for any reason that is Ok. Just health
y discussion.

Take care and good healing!

Kevin[/QUOTE]
Hey Kevin, agreed. Whenever possible it is imperative we get away from pharmaceutical medicines and utilize what is natural. There is a good study out there linking GBS to a bad gut, which can be the result of a poor prescription of antibiotics. How many doctors are recommending their patients take probiotics while on a course of these? I had to do a long course of antibiotics after a long bout of double-pneumonia, not once did my doctor do this.

But maybe we place to much faith in our doctors to solve our medical problems. Makes sense, they are after all the experts. But in the end you’ve got to take responsibility and get the facts yourself. Too much is being prescribed without enough knowledge of long-term consequences to our own health and that of the planet. Remember, all the drugs that society ingests ends up passed on into our ecosystems, water supplies, etc.

What is vaporization’ Is that smoking out a water pipe I have been on norco for 3 years and just got off of it 4 weeks ago!!! i would like to try the pot for the rocks in the soX
Ron

[QUOTE=Rmcgrath]What is vaporization’ Is that smoking out a water pipe I have been on norco for 3 years and just got off of it 4 weeks ago!!! i would like to try the pot for the rocks in the soX
Ron[/QUOTE]
Vaporizing is where marijuana is heated up to the point where THC is released into vapor and at much greater concentrations than by traditional smoking. The pot doesn’t actually burn because the heat is specifically controlled to only release THC and completely eliminates carcinogens (naphthalene, benzene and toluene) into the vapor. I use a Volcano and it actually uses a fan and a capture bag to efficiently minimize loss. You actually get more from your dope because less is needed.

[url]http://www.canorml.org/healthfacts/vaporizerstudy2.html[/url]

Merry Christmas to those who celebrate, thanks to the rest who also have to stop and wait a day while we have our fun….cheers!!!