Health Fund for HR (Paul Hudson)
From his wife, Lori:
"I am HR's caregiver. He has a neurobiological disorder and has also had severe headaches for years. The headaches have gotten progressively worse; in November, he began living with almost constant pain. He has been diagnosed with a rare type of headache called SUNCT. There is no known cure and no reliable medical treatment. To give you an idea of what he's dealing with, the headaches are nicknamed “Suicide Syndrome.” The headaches come randomly, with no warning, at all hours of the day and night; but for him, they are much worse at night. The intensity of the nighttime headaches is so great that he yells, cries out, groans, and sobs—repeatedly, every few minutes, for most of the night. He can't work. He has no quality of life. If you call him and ask how he is, he will say, 'Everything's okay,' because that's just how he is. But everything is not okay.
"We've been consulting doctors for the past few years, and have uncovered several health issues that we were able to address and overcome. But these headaches... In the past six months, he's been to the emergency room twice, had an overnight in the hospital, has seen two neurologists, and so far he has a diagnosis and found a pain medication that worked well for a while but is not safe to take long-term—so it's two steps forward, three steps back. He has an appointment in early May at a Headache Center--not fully covered by health insurance--where we hope to find someone with experience with this type of headache. He's on a cocktail of pharmaceuticals that scares me. He has lost weight, with visible muscle wasting.
"As a clinical herbalist, you can be sure that I have also been tapping into my extensive knowledge of natural medicine. Nothing is working YET. I know what we need to try next, including acupuncture and some herbal preparations, however we can't manage the costs of these treatments.
"I am a full-time caregiver. I work a full-time retail management job with varying shifts. I manage HR's calendar and business as best as I can. I've been trying really hard to work on extra projects to bring in some extra money (very slow going). I take care of the apartment, the car, the bills, HR's doctor appointments, everything. I do all of the things. And now I can't sleep because my husband is crying out in pain all night. On top of the physical stress of shift work and not getting enough sleep, the emotional and psychological stress of watching him be in pain and not being able to do a damn thing about it is wearing me down. He needs me to be around more and he needs me to be at my best. I can't do this alone anymore. We need your help.
"Thank you for anything you can do to help HR regain his health--and his life."
I was also able to schedule his surgery today. It will be in about five weeks. We won't find out the exact time until the night before, but in early February, I will put together a Facebook event to focus meditation on HR's healing before and after surgery.
Thank you for being there. Peace and Love.
Posted by Brian Marsh
We've tried almost all of the available medications and treatments for SUNCT, cluster headaches, and trigeminal neuralgia. We have tried a range of natural and traditional therapies, as well. Nothing has resolved his headaches and returned his quality of life. There are a few things that we will not be trying because they are not appropriate for HR for various reasons. We are still exploring a lidocaine nasal spray (looking for a local compounding pharmacy that will make it) and possibly Oxygen to get him through the next month or so; however, we've met with a neurosurgeon and HR has decided to try surgery. I will provide more details soon.
Once the surgery has been scheduled, I will write another update. I'd like to organize a healing meditation during his surgery.
Many thanks. Many blessings.
Posted by Brian Marsh
Since the oral medications have given inconsistent results and HR is still experiencing intense pain, he will be admitted to the hospital on Wednesday. He will be receiving an IV medication infusion with the intention of calming potentially overreactive nerves, thus reducing his pain. While in the hospital, he will also have another MRI of his head--brain, blood vessels, and nerves.
After this hospital visit, the next step will be to consult with a neurosurgeon. If the MRI still shows a clear loop of blood vessel that is rubbing against HR's trigeminal nerve, there is a good possibility that noninvasive surgery can remove the loop. There have been cases of SUNCT that have been resolved with this surgery, although not everyone with the syndrome has a direct physical cause. We remain hopeful.
We wish you peace and well-being. Thank you again for your thoughts, prayers, and donations.
Posted by Brian Marsh
HR's headache condition has been gradually worsening over the past weeks, and he has had many headaches over the past 24 hours. So, the abortive that HR's doctor prescribed did not work. I spoke with his doctor today and requested that they try the inpatient lidocaine infusion therapy that had been mentioned to us before. The doctor agreed, so that will happen as soon as possible (approx. a one month wait). In the meantime, his other medications have been tweaked in hopes that it will bring some relief.
Often, when someone speaks to HR between headaches, they say he sounds "good" or "great". That's because the headaches come in bursts. He will be in intense pain, often to the point of sobbing, then it will go away for a while and he'll feel fine. When this was at its worst, back in November/December, the headaches came every few minutes, so he rarely felt well. It can be difficult to remember that this was worse in the past, but we must.
I think he's gotten to the point where he's tired of the headaches controlling his life, so he's continuing to have weekly band practice and making (very limited) plans to perform. As you know, music is his passion, the thing that drives him, and he needs it.
There's a good chance that the lidocaine treatment will work and he will go weeks or months afterward without headaches. Let's send up prayers that this will be the case.
Let's also send up prayers that the cause of SUNCT headaches will be discovered, so that all of those who are suffering can go back to having a fulfilling life.
Love and peace to you all.
Hi I am a Philly based acupuncturist and herbalist. https://www.facebook.com/philadelphia.acupuncture/?fref=ts http://www.philadelphia-acupuncture.com/ I would be both happy and honored to help. Paying it forward, for all the fun, back in the day! Please feel free to reach out and either call or PM me,
Hi HR, I am really sorry to hear about what you're going through and it must be so hard to endure :( I have a relative who is a neurologist and I told him about your condition and he recommended the procedure Microvasilar Decompression. Ever heard of it? I'm not sure if this has already been suggested by the neurologists that you have been to already? In the meantime, please continue to stay strong, as I know you to be...I will also continue to pray for you to feel better and get the right treatment that will work best for you...God willing and God Bless you! xoxo
I hope you both get the peace that you both deserve. xoxo
just heard about this. please get better soon. love, a fan xxoo
http://www.vice.com/read/the-worst-hedache-in-the-world-876?utm_source=vicefbus I found this article that might help. I hope you get better soon, H.R. Stay strong. Keep the PMA
SUNCT and cluster headache are different animals. Both are Trigeminal Autonomic Cephalalgia's and both are painful, but they present differently. There's overwhelming evidence supporting the use of psilocybin for cluster headache (one-sided, excruciating event lasting from 30-180 minutes) however I'm not sure about it's use for SUNCT (100-500 stabbing pains over the brow within 1 minute). I'm an advocate going to Washington DC annually with "The Alliance for Headaches Disorders Advocacy". SUNCT seems to respond to specific "nerve stimulation surgeries". http://www.cracked.com/personal-experiences-2122-suicide-headaches-5-realities-worst-thing-ever.html
Dear HR and family, I know I'm just one of a billion fans out there but HR and Bad Brains changed my life. The music and the message helped me grow and become better human being. I work hard at maintaining that PMA and big part of that is linked to what I learned and what I felt listening to Bad Brains. Thank you for your work and thank you for sharing your message. Aloha!
Dear Lori, I know this is likely a long shot and that you and HR have probably heard of and perhaps tried every cure for the cluster headaches but I thought should tell you that I saw a documentary not too long on how one man was using mushrooms (psilocybin) to deal with his horrible cluster headaches. Anyway, as I said I know its a long shot but thought I'd mention it. Best to you and all the BB crew. Their contribution has been immense. Tito
My family and I know how painful this is. My grandfather had Tic Douloureux and was cured at the UCLA medical center about 20 years ago. That may have been an exploratory surgery, but he has been living pain free without the tic and is still alive. We believe it saved his life. Hope this information helps.
Have dealt with cluster headaches for almost 20 years know how desruptive and painful they are. Have had some success over the past couple of years with some things. Feel free to contact me about it. I know how destructive some of the meds can be and never had any long term success with them. If your going that route try oxygen. Good luck.
If possible, HR should go down to the Hippocrates Health Institute down in West Palm Beach, Florida. They can cure him.
Ps I had to stop sugar n carbs they give me excrutiatin headaches that last for daysssssssss...