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Pain Medications and PAH
Hello everyone,
I suffer from excruciatingly painful Auricular Neuralgia( pain through your ears) along with Occipital Neuralgia(pain in the back of the head and neck). All interventions(nerve blocks, trigger point injections, etc.) have not worked and the only one that might work has serious side effects like permanent paralysis. The pain is worst at night but occurs during the day as well. Needless to say this greatly impacts sleep and my energy the following day. My question to the community is for those of you who suffer from chronic pain from any disease : are you allowed to take any pain medications beyond something like Tylenol( useless on severe pain)? If so, what medications are you on? Thanks in advance for any info you can share.
Germaine
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15 Replies
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Hi @mgnorwood, I’m sorry you are experiencing such excruciating pain with no relief. I assume you are seeing a pain specialist since you’ve tried nerve blocks, etc., with no relief.
I also have chronic pain. Mine is legs and back. I see a pain doctor. I take Gabapentin routine, a muscle relaxer, as needed, and Dilaudid for excruciating pain with no relief. Dilaudid is a low dose. It was low-dose morphine before, but it was changed because of my chronic kidney disease (CKD).
Because our PH stages and coexisting illnesses are different, I suggest you speak with a pain management doctor to see the best option for you.
Let me link a new pain medication that my pain doctor mentioned to me recently. I had never heard of it, and she offered it as an option if my current pain treatment didn’t provide enough relief. However, mine is pretty well manageable with what I have. Manageable, as in it becomes more like a 5 or 6 on the pain scale than a 9-10.
The medication is Belbuca. You put it inside your cheek, which is supposed to last 12 hours and is non-opioid. My pain doctor says many love it because their other pin medications weren’t offering relief, and they had to take it more frequently.
I feel your pain, my PHriend. I hope you find the best option for you to offer you relief. Please keep us posted.
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Thank you so much Jen. I was so touched by your humanity in responding to my cry for help. I am awaiting a call back from the UCSF Pain Management clinic which is unfortunately usually booked pretty far out. I also use Gabapentin at night but it only gives me about 3-4 hours. I did receive Dilaudid in a hospital setting before and it did help but I am most interested in doing some research on Belbuca. I have never heard of this medication so thank you again for your insight . Like all of us, I almost always have a better clinic outcome when I am prepared and ready for battle.
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Hi @mgnorwood, I’m grateful you found helpful tips in my response. Chronic pain is never fun, and I am sorry you are struggling with it.
I found that Belbuca is an interesting medication for chronic pain sufferers. However, my low-dose Dilaudid is helpful. But if I need anything in the future, I may start it myself.
Of course, it’s best to do our research to be better prepared for clinic appointments. Please let us know how things go and when you do get to see the UCSF pain management clinic. Unfortunately, it seems too familiar post-COVID to have longer waits for appointments.
When this has occurred to me, and I am told no appointments are available for months, my PCP then sends a stat referral. That usually speeds up the process. With your excruciating pain, maybe this is an option.
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Hi. I tried Belbuca and it did not touch the chronic joint and muscle pain I have. I also tried a patch, buprenorphine, also no effect. The chronic pain is exhausting. But of even more concern is that my cardiologist says that the pain is the cause of my elevated blood pressure, which in turn is related to the PH, she said. Have any of you with chronic pain also been told this? Phyllis
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Hi @phyllisk, I’m sorry that Belbuca didn’t work well to offer you pain relief. I hate that you, too, struggle with this uncontrolled pain. Yes, dealing with chronic pain is exhausting.
My blood pressure already ran on the lower side before PH, so now, with my PH medications; it is lower. However, mine increases too when I am under stress or experiencing uncontrolled pain.
In nursing school, we were taught several things to look for to assess pain. One is increased blood pressure, so the comment about increased BP related to uncontrolled pain is accurate. However, I’m uncertain about that being associated with PH. But I am not a heart doctor. Usually, elevated BP uncontrolled is linked more to strokes, in my experience. So, hopefully, soon, you’ll find something to help offer you relief and get your BP under control, too.
Thanks for sharing your experience with pain medications. Have they tried two different types of pain medications for you? Maybe one for joint pain and one for muscle pain?
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Hey @mgnorwood, I wanted to check in and see how things are going with talking to pain management at UCSF. I hope you have an appointment soon, if not already addressed, for ways to relieve your horrific pain.
I’m sorry you’re suffering, and sending you positive thoughts that things will improve with your pain soon.
Have you had any luck yet? Take acre, my PHriend.
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My PAH is like 2.5 and doing well on my inhaled medications. However I have severe RA, OA, Fibromyalgia, and cancer. Yes, my immune system runs amuck.
I have a patch called Buprenorphine that helps with the constant annoying pain. I take hydrocodone for break thru pain. I have heat treatments for face, headaches and hands. I use distraction a lot with audio books. If you live in a special state and go to a special type store there is a massage ointment called Dragon. They can’t keep it in stock because the retirement centers next door use it constantly for their pain management.
You deserve to be comfortable but more than not is that it takes multiple types of therapies, trial and error on what will help you. Hugs
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Hi @darlarayne, I’m happy your PH is doing well with your inhaled treatments. Is that Tyvaso?
Thanks for sharing your tips for pain relief. It takes many different approaches at times. You offer some great examples of that. Heat is my best friend. I wear out heating pads and blankets often.
Distraction is amazing. I try reading, although often I can’t focus well.
I’ll have to check out this Dragon ointment. I’ve not heard of this but looked it up online. Is this it?
I’m grateful you’ve found a pain management plan that helps you with your chronic pain from all your medical conditions. Take care of yourself, and thanks again for sharing such helpful information.
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Yes, that’s the wonderful ointment. It even helped with my daughter’s sinus pain.
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Excellent, thanks; I may need to get myself some if I can find it in stock locally. Wow, it sounds like it helps with many types of pain.
Thanks to you both, these will be excellent anniversary gifts for Manny next month. I bet my hubby will find it helps relieve his migraines and sinus pain, too. And also want to check into the eye massager that @colleensteele shared she benefits from.
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Hi @mgnorwood, I’m grateful you found helpful tips in my response. Chronic pain is never fun, and I am sorry you are struggling with it.
I found that Belbuca is an interesting medication for chronic pain sufferers. However, my low-dose Dilaudid is helpful. But if I need anything in the future, I may start it myself.
Of course, it’s best to do our research to be better prepared for clinic appointments. Please let us know how things go and when you do get to see the UCSF pain management clinic. Unfortunately, it seems too familiar post-COVID to have longer waits for appointments.
When this has occurred to me, and I am told no appointments are available for months, my PCP then sends a stat referral. That usually speeds up the process. With your excruciating pain, maybe this is an option.
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@mgnorwood and @darlarayne in a recent column I shared information about an unusual gift my husband bought me for Christmas. It’s called a Renpho eye massager, and it features heat and Bluetooth music. It helps my migraines and helps me sleep. I realize you are both dealing with bigger struggles with pain but maybe this unique device might help you in some way. Let me know if you have any questions about it.
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I have a eye massager although I think a different brand. Its very relaxing. Highly recommend.
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Hi, Germaine. I am so sorry for your pain. It is a lonely affliction with little compassion…so pain warriors are special. I take Vicodin, and Prednisone. Have you ever tried any prescription NSAIDS such as Diclofenac? Jerri
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Hi, Germaine. I am so sorry for your pain. It is a lonely affliction with little compassion…so pain warriors are special. I take Vicodin, and Prednisone. Have you ever tried any prescription NSAIDS such as Diclofenac? Jerri
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Germaine, I’m sorry to hear about the head and neck pain you’re suffering. I have a small chipped bone in my neck which very occasionally gets displaced and causes me excrutiating neck upper back and shoulder pain. Years ago I found a very good chiropractor who was able to give me a neck adjustment which always settled things, without painkillers. I just tell you this in case you have not tried manipulation. Needs a very good clinician though – very experienced. Were you diagnosed after an X-ray? This is how my problem was discovered.
I also suffered lower back pain for years until a ruptured disc was found and fixed. The only painkiller that worked was one with phenacetin in it. This is one you need to be careful of with kidney and liver problems if you overdo it – drink lots of water. If you are able to get it – see if it works. It’s totally banned now in Australia so may be where you are too, but was a God-send for me. Good luck.
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Hi @auntlizzie, I’m grateful you found a chiropractor who could offer relief without painkillers.
I’m not 100% sure, but I believe the pain medication you mention containing phenacetin is no longer used here after some FDA guidelines. I could have this mixed up without any similar pain medication.
However, we do what helps offer relief, so I’m grateful that it was available for you when you needed it. Thanks for sharing, and enjoy a lovely weekend.
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