Had my first meeting with pain specialist (part of palliative team) yesterday. Long, it was two hours. Has anyone else have someone monitoring their pain. She gave me .5 percocets to take 3 per day for a week (she said with Medicare she is only allowed for the FIRST TIME to give me a week supply). She then also gave me gabapentin to take once a night for one week, then twice a night for two weeks and then 3 a night for another two weeks. I am and already have been on xanax for like 30 years (way before it was a controlled substance and take 3 mg. per day. It is now like a maintenance drug bc the three doctors I went to previously had said I had been on it too long to safely wean me off.) So the pain specialist knows this.
I feel a bit odd. It is not from the percocet as I have taken that before in the past for dental work, etc. I think (since I have never taken it before) it's the gabapentin? I can't put my finger on it but I just feel a little odd. I read about it and she specifically said to me NOT to ever just stop taking it because it could cause severe withdrawals. Not crazy about being on this drug after reading about it.
She also wants me to go to physical therapy. Is there anyone else on this drug? Do you just take it for say a month or two and then they wean you off it if my back feels better. I did need help bc of the pain when walking which severely affects my quality of life. Hoping that the physical therapy helps and that in a month or so, I can be weaned off the gabapentin and percocet (percocet will be the easy part).
Does it work like that? Are you given for drugs for a short period of time and then if feeling better or no pain, you can get off them. I just really do not want to be on them for a long time or am I being unrealistic? I didn't think to ask her but I am seeing her next week so I can write down questions I have.
Maybe my body has to get used to it? For whatever reason, after reading about gabapentin, I am nervous about taking it now.
I took gabepebtin and then lyrica for pain in my head/neck. As I increased it I felt “not normal “ plus it didn’t help the pain much. It is used for nerve pain and is something you take constantly. Be warned that it can affect depression. Mine got severely worse and my doctor was changing my meds which didn’t help until I discovered the information that it can worsen depression. Once I stopped it I was better. I weaned off gradually but wasn’t taking it a long time.
I had a really bad hip for 1 1/2 years before cancer was discovered in it. (Long story of misdiagnosed cancer 😡). I still use a cane and this is after a complete hip replacement a year ago. My mobility has improved after physio as it built up the muscles to help support my hip. I still can’t reach my foot but the pain is gone from the hip so that is worth it.
I take 7.5 of hydromorphone cont twice a day and 500 mg of Vimovo twice a day. This has taken away all of my pain and given me back my sanity and a lot of my mobility. With a cane I can’t do what I want but it’s a start.
Sorry this is so long but trying to give you as much info after you might need. Fight for yourself as you should not be in pain along with fighting this horrible disease. -Sarah
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Never apologize for the length. I need to know bc I have no one else to ask. I have no family and no friends that even live close by so I am doing this all since day one on my own. I just started the gabpaptin and I feel a bit off already. May I ask how long you were on it? I read you have to be weaned off slowly. I do not want that type of drug. Darn.
At what point (I am also scheduled to meet and go for physical therapy) do you get weaned off both the gabapetin and the percocet so I can tell whether I can go without meds without any pain. I am already sorry that I have to go to this pain specialist but I need it for now. I am hoping my back will feel better and then I want off all drugs. She also mentioned about adding another type of antidepressant that helps with pain. Too many drugs. Feeling overwhelmed and feeling a bit odd on this new med. Did you feel that way the first time.
I’ve had to look up the names of your painkillers as they have different names in UK
I saw a pain specialist about six months ago ...I was a bit bossy and asked for morphine patches as a friend said they were brilliant...anyway they made me sluggish and a bit queasy so I abandoned them and I don’t think they were much better than cocodamol for pain relief
I’ve tried the long acting morphine capsules...I at night and one 12 hours later...again not that amazing even after doubling the dosage
So I’ve had a go with them but now I take cocodamol which is 30mg codeine with 500 mg paracetamol in each tablet...I take two tablets 3-4 times a day...if I’m desperate I add an oxycodone pill in between...the efficiency isn’t perfect but at least I don’t feel peculiar...a few times I’ve taken too much and scared myself!!
I’m not worried about addiction because I have stage 4 and probably not on them for 10 years so why worry....I’ve read that it’s unusual to become addicted if using opioids for pain not recreational use
So I’m just managing on this combination at the moment...though I have a cupboard full of morphine drugs that I’ve not used...in England they’re dished out like sweeties...appalling really!!
I forgot I take 10 mg amitriptyline at night...have done for years as a migraine prophylactic so just continue with it
I must admit after looking at the side effects of gabapentin I wouldn’t fancy those.....it’s very difficult to get a dose that works for pain but without debilitating side effects...driving can be dangerous if you're ‘out of it’ but I need to drive so I’m careful now about the dosage
I really sympathise with you.......it’s awful to be in pain...my only solace is I’m pain free lying down so no sleep disturbances thank goodness
I hope you find the right drugs/dosage but don’t worry about addiction ...least of our worries
Barb, have you tried hydromorphone cont? It’s a slow release pain med also known as Dilaudid. It is the best of all the olives as far as I’m concerned. Morphine made me nauseous and OxyNeo made me twitchy while neither of them actually helped the pain. The hydromorphone works well for bone pain and I feel normal.
I haven’t tried those but looked up the side effects and they’re similar to other opiates
I’m sort of managing on cocodamol and oxycodone when needed but I struggle sometimes...it’s weird I can swim or do a yoga session with very little pain but walking and riding make the pain really bad...it’s all in between my shoulder blades where I had the fracture and vertebraplasty ( regret that) ...I sometimes think it must be muscular or would be in constant pain but I’m not ...thank goodness as this is bad enough
Apparently here in the US (I had seen the word but never knew what that pill was) it is also used for nerve pain. The bad thing is that once in a while I will take a day off from the Verzenio bc of the side effects. My onco said I can do that once in a while.
This pain specialist gave me one week's supply of generic percocet (the 5s). I am supposed to only take 3 per day but the one this morning did not really work and I was feeling pain so I said the heck with it and took two at once and still feel nothing. The brand name is Amneal and I googled and loads of people recently have said they feel like placebos. She calls them in to the same small family-owned pharmacy I have been using for years. I have to ask them what they gave me in 2018 when I had that operation where they cut tunnels in my leg. Whatever generic they used at that time, the percocets were alot better. Generics use different fillers. These are garbage. Going to call the pharmacy tomorrow and ask what generic brand they gave me in 2018.
She also added gabapentin. I start out with one a night for a week, then two a night for two weeks, then three a night for three weeks. She said night would be better bc they relax you and help you sleep. NOPE. I took my first one last night around 10:00 pm. OMG...I felt like I drank a jug of coffee. It felt more like a stimulant and I was up until 3:00 am. I am nervous about this drug bc she said I could not just stop taking it. You can have seizures. I am already on xanax for about 30 years bc it was prescribed for me before they knew more about it (which is why I dislike new drugs) and I went through xanax withdrawal once when I ran out and I forgot to ask my doctor and then he was closed for Jewish holidays.
That was scary. I did not even think it was xanax withdrawal bc no doctor ever told me you can just stop. I had been on it for about 10 or 15 years. If there is a hell it cannot be worse than xanax withdrawal. I was told afterwards that it is similar to a heroin withdrawal where you feel like you are going to die, but with xanax you can die. It was pure hell. Scariest thing I ever encountered. I did not realize until beg. of third day (no sleep at all) and my body went into seizures. I called the pharmacy that was located below my primary doctors office at the time and the pharmacist realized the seriousness of it and he knew I had been on it for years so he sent over a guy to give me a week's supply. I could barely see at that point and was walking into walls and my heart was hurting so much I felt like it was going to explode. I took one of them when he came and within minutes I felt normal. Scared the hell out of me so now I carry them on me (besides leaving at home). I went to two different specialists but they both said I had been on the xanax for so long at that point and that it would take about 10 years to wean me off it and it was better for me just to stay on it so now I am on it for about 30 years or so. Crazy. It was prescribed to me when it was a not controlled substance and you could get like three refills. Now it is controlled and NO refills. That is what is scary a bit about new drugs. They never really knew what the side effects may be down the line, just like with xanax.
Apparently the gabapentin is just as dangerous. The pain doc told me never just stop taking them even for a day that I could go into instant seizures. I do not want to be on another drug like that.
This was my first visit with the pain specialist in palliative care and actually the first time ever with a pain specialist. Medicare in US (bc of the opiate addiction crisis) only allows her to prescribe a rx for generic percocet for a week. After that, she can prescribe more because I have cancer. they keep changing the rules here in NY and the opiate drugs. They make it so hard that doctors are willing to let patients suffer rather than have to deal with the govt. and the laws that keep changing.
Because it is a pain clinic, I also have to pee in a cup every time I go there to ensure that I am taking the pills they are giving me and not selling them LOL.....
I then start physical therapy next week. I see her next week (exactly a week). But I guess I will have to ask her. If I am taking the percocet and gabapentin and doing physical therapy, how am I going to know if the pt is working or if its the drugs so I need to know how long she will keep me on the meds because obviously I will need to wean off both otherwise I will not know if the physical therapy is working or not. Also part of being on this palliative team (she is the pain specialist part) is that I have to go see a psychiatrist. She said I may needs for depression. I said No. I am depressed not because of the cancer but bc of the pain but I am forced to go. (sorry for the length. )
I don't drive in Brooklyn (never got my license). I am curious how they do it England. I will have to provide urine sample every time I go. That is to make sure I am taking the medication as directed and not selling them instead (LOL). They are pretty strict here in NY. I dont think many people are giving morphine at all for at home use. Pls even getting percocet (generic which is less potent but all insurance will usually just pay for the cheaper generic and not the brand name.)
Do you go monthly to a pain specialist now and do they test your urine to make sure you are taking them. And do you take them as needed or on a strict regiment as to when you have to take them.
She also gave me some type of cream that I have to measure (4 grams) to put on my back twice a day. I read that cream, you have to be careful not to go over 32 grams.
So much medication besides what I am on, I am starting a chart bc I forget. She also stated something about giving me some kind of antidepressant that is also used for pain (I do not want that either) but it won't be my choice. The doctors here in US are so paranoid because the laws keep changing and they have to keep records that they will go out of their way NOT to give it you. UGH.....
Personally, I would rather do medical marijuana for the pain and she has no problem with that but in the US although insurance will pay for doctor visit to get card (and with cancer it is always approved). They opened a large medical marijuana store on New York Fifth Avenue which has all the expensive stores and it looks beautiful and more like an expensive jewelry store with the marijuana strains are in glasses cases , but medical marijuana can cost a person anywhere from $200 to $500 a month and Medicare nor does private insurance pay for the actual cost of the marijuana. They worry about opiate addiction, so why not make medical marijuana an option that is cheaper and have insurance pay?
Haha...never get checked or do urine tests ever....they are prescribed then that’s it...up to the patient what they want to take....like I said earlier I’ve tons of the stuff in my kitchen!!
I wish I could get my hands on medical marijuana...in the UK you can have as much opioid stuff as you want but no weed....mad isn’t it
Wouldn’t dare risk buying it on the street as could be dodgy and I could end up in prison ( also I’m still on the GDC register so would be struck off!)
All the best
Barb xx
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I would say you would keep taking both drugs as they won’t “cure” the pain just treat it. I took it for about a month and then cut back and stopped. It wasn’t much to wean off but I wasn’t taking it a long time. I felt off with it. Kind of tired and they said it would also help with sleep and it didn’t. Amitriptyline is likely the antidepressant. It does work well for some types of pain. It really depends if it is nerve pain or bone pain. I would stick with it till you find the right mixture. Some of the side effects do go away after awhile. Good luck and keep us up to date.
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They said they are not sure its from the cancer but may be more from arthritis but funny after three years, I started with a dull ache in my lower back a few weeks before they found the holes in my spine (two). The pain specialist was adamant that I not stop taking the gaba on my own since I mentioned occasionally I take a day break from the Verzenio bc of the side effects. She said it is very dangerous to just stop taking it (which is why I really do not wish to be on it). But we will see. Yesterday was the second time I took one gaba at night and it did help me sleep well so that was good. the first night I was very jittery and it felt like I drank a cup of coffee. I guess my body has to get acclimated to it. That is why she suggested night. I am hoping physical therapy helps to a certain degree but not sure how I will know if I am on these drugs. I will ask her next week.
Another addition...as far as knowing if your back pain goes away, it is likely that the drugs will not completely take way all your pain. It’s very hard to just totally erase it. So you will know if your pain gets better because you just will feel better. My doc and I have adjusted my pain meds up and down when my back pain was at its worst. Elaine
I was the one who said I needed it and was given it for back pain. Sarcie responded to me but her pain I believe was in her neck. My pain specialist also wants me to start physical therapy. She does not think after looking at my records that my pain is from the cancer but the timing seems odd. I have had the cancer for three years and all of a sudden the pain started as a dull pain and then after CT scan they found two holes in the spine, one on upper and one on lower. It started out slow the pain and I was taking 800 mg. of ibuprofen but then the pain got worse very quickly and I could not even walk 1/2 block with my lower back giving out. It would make me tear up and then I would have to stop and lean against a wall or a lamp post to make the pain go away, starting walking and again after 5 mins stop. It got the point that I could not even make it to the bus stop. I do not drive. I had to pay car service $15 to drive me five blocks, so I could run in and get toilet paper and then drive me home bc I could not walk the five blocks. I usually order from Peapod that delivers and I thought I had more but I didn't.
Not sure how I am going to be able to tell if the physical therapy is working if I am on these pills. I was doing somewhat okay until the pain started. It is depressing to feel pain and not be able to walk. I told her I felt like I was under house arrest. I have no family and no friends that even live in Brooklyn to help in certain situations so it is always up to me regardless. It killed me to pay $15 to buy three packs of TP.
Hopefully, the physical therapy will work. Nervous though. I also have to see a psychiatrist because of the depression, but I told her the depression is bc of the pain, but again it's a requirement of this palliative care team requirement.
Then next month I see a cancer nutritionist that they just hired at my cancer center. My onco made an appt. for me to see her but so many people are booked at my cancer center that I have had to wait a month and will not get to see her until March 4th. It's like a full-time job without any benefits!
Are the pills taking away all of your pain? That would be great if they did. If you are on them and have no pain, they will probably start decreasing them, but I wouldn’t worry about it yet. All of it usually takes time, even though we all want instant results!
Since your pain comes back when your medication wears off, it will be easy to know when or if your pain goes away. Most of us aren’t great about taking something on the exact hour we are supposed to take it, so you will know if you go a little longer and the pain doesn’t show up. It will be pretty obvious if your physical therapy works. Truthfully I don’t know anyone that has had back pain cured by PT. My PT told me that since 6 treatments hadn’t done anything at all, it was time to look into more scans...this was before my doc realized my back pain was due to MBC.
My daughter-in-law was put on gabapentin for Tmj. She said that after 3 or 4 days the weird feeling went away, so I would continue for a while.
As far as the pain, we have a chronic disease and pain from it is not apt to disappear when it starts. I asked my pain nurse about my pain going away and she said it was like arthritis and once you had a certain amount of degenerative disease, you always have arthritis pain. We deserve a decent quality of life and being hooked on a pain med when you have cancer is different from being hooked on drugs for the high. You are taking it for pain. I take two types of opioids and I get pain relief but not a high. If for some reason you don’t need the pain medication, your docs will know how to take you off. I went from a 25 mcg Fentanyl patch to a 12.5 mcg patch with nothing but slightly increased pain but no other problems. I would say not to second guess your pain specialists especially because you don’t have too many other options. Elaine
No, I need to follow their rules. They will be (as I had my first two hour appt. with the pain specialist) be giving me urine tests to ensure that I am taking the opiates as directed and not selling them (people do do that). I told her in advance (bc I knew the urine testing was going to be part of this program) that I do smoke mj at night for relaxation and she said Thank you for telling me that and that she has no problem with that (even though I do not have a card) bc she said many cancer patients use it and prefer it over anxiety meds.
Also, they want to make sure I am not doing other drugs. She said something about wanting to try an antidepressant for the pain, but I would prefer the percocet. I told her years ago I was on antidepressants for depression by a psychiatrist for about three months. Sure, they took away the depression, but they made me feel numb. I did not feel depressed but I did not feel happy, I felt nothing and thought I would rather feel some kind of emotion, even if it is depression rather than nothing. So the psychiatrist had to give me two other kinds of meds to take to wean off the Paxil I think and Wellbrutrin.
I take gabapentin PR in for restless leg syndrome. It does make me feel weird, groggy and almost out of body. I do think it’s a relatively safe drug, from what I’ve read. I’m not familiar with how it may interact with Xanax
I have been on xanax for over 30 years. Prescribed way before it was a controlled substance and you could get like three refills. THEN, they realized how addictive it was to the body. The 3 mgs. (three xanax) I take each day for now about 28 years or is maintenance. About 8 years ago, I went to two different specialists and both said that since I have been on xanax for so long, it would take at least 5-8 years to wean me off and it did not make sense to do so. So they told me to think of it as a heart person having to take heart medication every day.
That is why I get scared of the new drugs. They never found out until a couple of years what effects they will really have after a few years but better than the alternative.
Oh no. You would have to know them. They are a father and son team and the son thinks he is a doctor. My onco in the beginning wrote me a prescription for 800 mgs. of ibuprofen with six refills because of the tumor pain in my breast. The first thing the son said was you do not need to be having six refills. I was like do you have cancer? But I have to be careful bc they are legally allowed not to fill your rxs or keep you as a customer and they are close. All other pharmacies are far away from where I live.
I take Gabapentin for damage to my vocal cords from radiation. I coughed all the time and it blocks the nerve impulse to cough. I have taken for a year with no side effects
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Can I ask the dosage you are taking. For me it is for nerve pain from my lower back that is so severe. Especially when I walk so it is affecting every aspect of my life as I do not drive. She is starting me out at 1 gaba at night for the first week, two pills at night for the two weeks and then three at night for three weeks (that will be 300 mg.) She suggested night bc she said it may make me tired and its only my third day but last night my second time, it did make me feel tired and I slept well without even taking ambien (which I was taking every night).
I just worry about being it on going forward. I am to start physical therapy next week. I see the pain specialist again on Tuesday (one week) since my first appt. I am also getting 3 .5 percocet (generic, Amneal and they hardly touch the pain at .5). Generic is NOT the same as the brand. They use more fillers and there is less oxycodone in them. If I take two, it relieves the pain but I was told I am only allowed to take three per day.
Medicare (not sure about private insurance) only lets the pain specialist for the FIRST Time give me a one week supply (some new law, I can't keep up). But one .5 generic is not touching the pain. She also gave me a gel that I have to measure for my lower back. Chronic pain is not fun at all.
I am wondering (I will ask her on Tuesday) at what point do we wean myself off both because how I am going to tell if the physical therapy is working or not, if I am on medication.
I am just a little scared to be on it because I read that you have to be carefully weaned off it and cannot just stop taking it suddenly or you can go into a severe seizure. So hoping this is not a long term medication I will have to be on.
I've been on gabapentin for a few years. It's a form of neurontin and I think those are prescribed for damaged nerves. I haven't had trouble with it that I'm aware of. I've also gone to physical therapy several times and found that different PT places have very different ambiance. The small town place nearest me is wonderful with a very happy vib and I've had alot of fun being there. I am going to another round of it next week, for lower back issues.
What kind of physical therapy do they make you do? I was overweight when diagnosed and now with all the meds, I even more overweight. I seen a record left on my oncos desk that listed me as "morbidly obese." I said to her Geez, I mean I know I am more than overweight, but can't they just put obese. Do they really need to add the word morbidly LOL?
300 x2 at night to stop coughing. On a another note I was able to wean off a anti-depressant Effexor because my doc said gapapentin helps with hot flashes which is why I started taking Effexor. And talk about bad withdrawal! Effexor is the worst!!!
Brain snaps? Feel like electric shock going through your brain? Dizzy?
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She mentioned that maybe the psychiatrist may want to give me antidepressants and I said no. I did that years ago Paxil and wellebrutin. It made me feel numb. Completely numb. Not happy, not sad, felt nothing. I told the psychiatrist at the time I think I would rather feel depressed and know I am still alive, then feel completely numb. I was on for three months and then he gave me medication to wean myself off the Paxil and wellebrutin. Odd thing was, I had no appetite at all. I mean I had to force myself to eat something because I never felt hungry. I lost like almost 25 pounds in those three months but it was weird never to feel hungry and force yourself to chew and swallow food because I knew I Had to eat.
Of course, once I was off it those pounds came back on and fast. LOL
I had a CT scan of my back done before meeting with pain specialist who is part of the palliative team. It shows the two holes and my onco said it showed disintegration of a disc in my back which may be from arthritis. Just odd that I never had any problem with back pain and then I started to have slight pain and then they found the holes. They are very strict here in NY and especially Maimonides where I go. They will be doing urine tests every time I go to ensure that I am taking the meds and not selling them (the opiates). Also, if I am given say a three week supply and have an appt. with her, I have to bring the bottle of opiates to make sure I have exactly the amount I should have left and not taking more.
It is crazy but unfortunately some people apparently do not take them and sell them bc they make alot of money selling them on the street.
I admitted to her that I vape THC cartridges. I did this before she even mentioned that I would have to always take a urine test bc I knew I probably would have to and it would come up. Actually, she was thankful that I told her. She said I am glad that you told me and that I have no problem with that as many of my cancer patients use it for anxiety and pain and/or relaxation. I do not have a mj card but buy from someone I have known for years. I knew it would come up in the test.
Unfortunately, in NY it is fairly easy for anyone with CANCER to get a medical marijuana card and they opened two stores in NY for medical marijuana but Medicare nor private insurance will pay for the cost of the marijuana itself, because it is not FDA approved so it basically said most people get it off the street bc they cannot afford the high cost of getting it in an dispensary.
I swear the one that then opened on Fifth Avenue in NY looks like a high-end jewelry store. I think it helps just as much and is less addictive than the opiates and all that other stuff they give.
Odd, yesterday as I was discussing through email with a friend, a news report came on that in New Jersey (I am in NY) anybody that is on worker's comp bc of an injury can now have their medical marijuana paid for by workers comp. Not anybody with cancer or anybody on SSDI, but those on workers' comp. can now have their medical marijuana paid for. Who decides these crazy rules.
The 5 mg. of generic percocet is weak. I am only allowed 3 per day but I have to take two at once to make it work. I am going to ask her (but you have to be careful here at this place) if she would give me 10 mg. and I can cut them in 1/2. It has more oxycodone if I get 10 mg. and cut in 1/2.
I'm glad that on the label, she must have written it so that it says For Chronic pain from cancer. Because I have always gone to the very small Jewish family owned pharmacy and in the past, if I have gotten more than one refill of opiates meds from a dentist or even a doctor, they will tell me that I am getting too much and that if I get another rx, they will not fill it. But now that it says chronic pain from cancer on the label, maybe they won't give me their looks.
My generic is called Anmeal. I looked it up and apparently many people in 2020 have been complaining how weak it is. Generics are NOT like the brand name. They have more fillers and actually less of the oxycodone in it.
I hate the feeling that I am at the mercy of this pain specialist. I go back on Tuesday but am going to ask her if there is something else besides the gabapentin bc although I take it at night and it seems to give me better sleep, the next day I am very jittery and extremely anxious and I don't like that feeling.
On top of all this I am feuding with a neighbor in my building who is on the coop board (I just rent it, don't own it and my LL lives in another apt. on another floor). He is trying to intimidate me bc I am a single woman. I wrote back you would never do this to a man.
UGH...have to see a psychiatrist this week also, it is a requirement of the palliative team thing. She said you are depressed and have to see him. I said I am not depressed bc of the cancer, I am depressed bc of the pain. He looks young enough to be my son LOL....
I took Gabepentin for 2 doses only. It caused both of my wrists and fingers on both hands to go completely numb. I could not hold on to anything or grasp. Very scary. It lasted for weeks. Thank goodness I am okay now.
I took gabapentin for a couple of months, it was a night-time only prescription. I would say yes it did help but the side effects were very not worth it - it made me feel quite spacey, gave me very vivid dreams, really had me spending way too much time in my own head almost living in another reality. I was not given a big warning about going off it. I think my dosage was fairly low and I had only been on for a couple months at most. I went off by myself. It was wonderful to feel the fog fade. Thing is we are all different and just like cancer treatments the same things don’t work for everybody. I know my body better than any doctor. I do listen to my doctors but if something feels wrong I won’t continue taking it.
I told the pain specialist that I was taking at night as she recommended bc they help with insomnia but that I noted the first week while taking them, I was had much higher anxiety the next day. I then mentioned (I have been on ambien for several years) that I had stopped taking the ambien bc she said the gabaprentin would help with sleep. She said the anxiety was probably caused by my stopping the ambien so suddenly and advised me to continue taking it.
But she was firm on telling me not to stop the gabapentin as that was not safe and I would have to be, if it came to that, weaned off it.
But I have a friend in FL who has been taking 600 mgs. of the gaba for her restless leg syndrome for the past five years and she had never been told she cannot just stop taking it. So confusing.
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