Phantom Pain Medication

[historydude]

Hi there, my first post on this forum.  I am looking for suggestions for pain medication for phantom pains.  A little back story first.  I've had PP 24/7 since I had my AK amputation in December of 1988 when I was 16.  Except for the first several months when it was a nightmare, I don't notice or think about them them 99% of the time.  They are painful when there are weather pattern changes but I've learned to deal with it.  However, in the last few years, I've been having a different kind of PP trouble.  Sometimes late in the day, they will home in on a certain part of my foot and just grind away constantly.  Its painful and annoying while I am awake but very problematic at night when I am trying to sleep; it keeps me awake.  I can go weeks without this happening and then it may become a problem for several nights in a row.  Sometimes two Tylenol and an Aleve is enough to allow me to sleep.  When its not, which is more often the case, I take Vicodin (Hydrocodone 5mg) which helps with the pain and helps me sleep, but sometimes can cause insomnia which I counter with Benedryl.  Obviously this is not good, and neither is taking hydrocodone long term so I would like to find something else.  

So, while I try to figure out why I am getting these problematic pains after being OK for over 20-something years, I need to find a medication that can quiet down the pains so that I can sleep.  I don't just want to blindly ask my family doctor for something different.  I would like to know a little more about what medications are currently being used.  Google searches have not been helpful.

Thanks in advance,
Rich

[snowyh]

Hi, Rich, and welcome to the forum. It's good that you've been paying attention to what seems to cause your episodes of PP. Doctors I've discussed this with over the years generally are at a loss to prescribe meds for it because the genesis of the pain is in the brain, not the amputated limb. They often rely on the patient to tell them what works.

I've suffered from PP since my amputation in 1972 at age 15, so I've had a lot of years to determine what triggers an episode--in my case it's stress--and what treats it successfully. Over the years I've used Valium, Vicodin & (currently) Lorazepam to manage the "pain." Usually a 30-pill prescription will last me at least 5 years, and Lorazepam is not even an opioid, but sometimes I feel like my doctor and his/her staff look at me like I'm a drug addict when I ask for a refill... once every 5 years! Since I have had tremendous success with homeopathic remedies for lesser ills, I decided earlier this year to try taking one to manage my stress, which I hoped would take the edge off of PP episodes--that's all Lorazepam does anyway.

In February of this year I started taking Hyland's #6 Kali Phos 6X (for stress, simple nervous tension & headaches). The dosage is to dissolve 4 tiny pillules under the tongue 3 times per day for maintenance, and to additionally take 1 pillule every 15 minutes during acute symptomatic episodes. I noticed right away that I was more relaxed and even a little unfocused (which I didn't like), so I now take the maintenance dosage 1 to 3 times per day depending on how I feel stress-wise. I have only had one PP episode since starting on the remedy, during which I took the recommended dosage for acute conditions--and by golly it worked better than even the Lorazepam! I'm not ready to throw out the prescription meds and rely entirely upon homeopathic remedies yet, but I'm quite hopeful that this will become my new go-to remedy to manage PP. As a rule, I experience 3-4 acute episodes of PP annually, so I'll have to wait a while longer to determine whether the homeopathic remedy has successfully reduced (eliminated?) the number and/or severity of my PP episodes. So far so good; I'm keeping my fingers crossed.

There are homeopathic remedies that say they are for PP, but the remedies recommended indicate that they are effective to treat actual pain from the amputation (incision, stump, swelling, etc.) rather than what I know to be phantom pain, which originates in the brain rather than in the injured part of the body (you feel the pain in the amputated limb). But since your PP occurs mostly at night and keeps you from sleeping, I might recommend 3 homeopathic treatments which I have personally found to be successful, not for PP but for their labeled purposes:

1. Hyland's Restful Legs (for itching, crawling, tingling sensations in legs). RLS/restless legs syndrome generally occurs late in the day and especially when one retires to bed, and makes it almost impossible to fall asleep.
2. Hyland's Leg Cramps (for calf, foot & leg cramps)--also prevalent at night and while sleeping.
3. Hyland's Calms Forte (sleep aid).

All of the above are available at amazon.com and are highly rated by many users. Perhaps you're suffering from phantom RLS or foot cramps in your amputated foot? Anyway, that my 2 cents worth. Good luck to you!

Helen

[historydude]

Thank you so much for the lengthy, thoughtful and informative reply, Helen. I will check into those things. I too hate the guilt trips. The last time I had it refilled was about 2 months ago and I had to go in where they ran me through a litany of questions. I need to call now for another one and I am dreading it, especially since 2 months is the shortest time I've gone in needing a refill. I am going to ask if there is something else they can prescribe as well because I am looking to stop the hydro as a solution, but need it now until I find something else that actually works. Can you point me to the Hyland's #6 Kali Phos 6X on Amazon? When I search for that I am getting all kinds of variations of it and I am not sure which you are referring to. Thanks in advance.
Rich

[snowyh]

Hey, Rich. Here's a link to the product I use: www.amazon.com/Hylands-Phosphoricum-Tablets-Homeopathic-Headaches/dp/B00020HTGQ/ref=sr_1_1_a_it?ie=UTF8&qid=1496909662&sr=8-1&keywords=Hyland%27s%2BCell%2BSalts%2B%236%2BKali%2BPhosphoricum%2B6X%2BTablets&th=1

There are two potencies, 6X & 30X, which refer to the # of times the active ingredient has been diluted (6 times v. 30 times). You would think that the more times it has been diluted the weaker it would become, but it's just the opposite in homeopathy--the more diluted it is, the stronger it becomes. I actually ordered both dosages so I could make my own comparison, but I'm still taking the 6X and haven't tried the 30X yet. Recommended dosage for the 30X (2 pillules under the tongue 3 times/day) is half that of the 6X.

If you're looking for a prescription alternative to the Hydrocodone you may want to consider Lorazepam. Hydrocodone is an actual pain reliever and an opioid, whereas Lorazepam is a benzodiazepine used to alleviate anxiety. Hydrocodone relieves pain but makes me feel "goofy" (no driving!); Lorazepam helps me relax and sometimes makes me sleepy (again, no driving), so I try to only take it once I'm in for the day. My friends tell me it's commonly prescribed for people with anxiety. Perhaps that's my problem... I tell the doc it's for my PP and the first thing they say is that it's not for pain, so I then have to go into the explanation about my PP being triggered by stress. All I know is that I wouldn't want to go through a PP episode without something available in the medicine cabinet in case it gets too bad!

Helen

PS--If your regular doc starts giving you the 3rd degree every time you ask for a refill, perhaps you should make an appointment with a neurologist (brain guy) or a pain specialist--they may be more familiar with treating phantom pain.

[penelope81]

Hello: This is my first time to post, but I'm very interested in the topic of phantom pain management. My right leg was amputated above the knee last August due to infection (I'd been fighting infection for a year previously). I've had PP from the beginning, but it had been mostly at night. I had been prescribed gabapentin 300 mg. 3 x day, but it just wasn't working, so I was taking a 5 mg. oxycodone at bedtime to help with the pain, and help with sleep. I wanted to get off the opioid so my PCP increased the gabapentin to 300 mg. in the morning, and 600 mg. at noon and at night. That helped quite a bit and I was using only that until 2 days ago when the PP just started going crazy to put it mildly. Yesterday I felt like I had an electric shock going through my big toe (you know, the one that isn't there). That went on every few seconds all day and into the night. I took an oxycodone and finally got a few hours of sleep. Today the pain is similar, but has shifted from my big toe to the side of my foot and ankle (also, not there). It's very painful as well as annoying. I wonder where the pain is going to be tomorrow. I've had very little pain in the stump from the very beginning and I wear a prosthesis all day every day which causes me very little discomfort. Any suggestions on what I should be asking my doctor for if this continues? I appreciate the forum and to be able to "talk" to people with similar problems. BTW, I'm nearly 82 years old.

[snowyh]

Hello, Penelope, and welcome to the forum. Gosh, too bad to hear about your PP getting worse rather than better. I think the most important thing is to get to the right kind of doctor--that is, one who understands what PP is and has treated it successfully in other patients. Though any doctor may meet these criteria, I'd bet on a neurologist to be the better choice of specialist. The doctors who write books and articles on phantom pain (the phenomenon, not the treatment) are usually neurologists. They're also probably less likely to look at you like some sort of dope fiend when you ask for pain meds. So, my recommendation of what to ask your doctor is, "Can you refer me to a specialist who has experience treating patients with phantom pain?" Good luck, and please continue to let us know how you're doing.

Helen

[mary53]

I was having pain and sensations pretty bad in the beginning but my husband wouldn’t let take anything stronger than ultram. (I have a drug and alcohol history). My plastic surgeon removed a neuroma that forms after nerves a cut. It helped with the pain quite a bit with only rare flare ups. But, the sensations didn’t go away. I feel them 24/7. The itching and restless legs is the worst. I had restless leg before the amputation and I can’t take the regular rls meds due to hallucinations. So I’m screwed. Been thinking of getting the spinal implanted device but not sure if u can have mri s with that.

[melsy]

I have had Pp since amputation 35 years ago. They come and go but when I get a bad episode I usually have them more frequently. Then sometimes I can go a few months without them. I always thought it came from my back when gardening etc but it is not the only reason. I am interested in this forum to hear what painkillers other amputees use. My Doctors in the past haven’t known much about it. I even went to a pain clinic who prescribed something to be taken permanently which I wasn’t prepared to do. My last episode at Christmas my daughter took me up to the Dr and I was given, Brufen 800mg, tramadol, and Morphine liquid. I did eventually sleep on the couch until morning. I haven’t heard of a lot of medications mentioned.