Pains have got to go, or else...

[alan]

After 20+ years of continually increasing post-SCI pains, the central pain syndrome and related effects have finally rendered me totally homebound (and I was pretty close before, as some of my prior messages indicated - every year, the distance I was able to travel has decreased as the pain levels went up.) The upset stomach sensation, which is related to the abdominal pain portion of the problem, is now exacerbated further by riding in the van, which means I am unable to go anywhere. I've already been forcing myself to eat for 20 years because of the constant feeling of burning fullness that also makes every breath painful, but at least I used to be able to get out of here occasionally. No more. I tried to get out over the weekend, but had to turn back because of the nausea. This is damn depressing.

I have tried every alternative therapy known to man. My shrink is no help - it isn't crazy to be overwhelmed by severe chronic pain. The number of pharmaceuticals I've been tried on is probably in the triple digits (and still growing), but all have either not helped, or caused intolerable side effects that prevented me from taking them long enough or reaching a high enough dosage to find out if they would work, I am fed up with this pain nonsense, and must find something that will relieve it, or at least reduce it a decent amount. I don't want to become another name on the list of quads who kill themselves (I'd much rather stick around), but I'm quickly running out of other options. Having your entire body on fire without ever getting a break is not good for one's sanity, nor is a 24 hour queasy stomach that doesn't respond to anything.

I don't want sympathy (though this post may appear to say otherwise) - it serves no useful purpose. All I want is the pains controlled to a level that allows me to actually have a life. I don't consider that too much to ask. There's no syrinx, pinched nerve, or anything other than the SCI itself causing the pains - everything has been checked and rechecked.

I'm open to any ideas re what else to try. I've never been able to get to high dosages of opiates (which may or may not work on central pain - opinions vary), because I haven't been able to overcome the constipation they cause. Neurontin, the apparent holy grail of nerve pain, gives me hallucinations. Tricyclic antidepressants mess up my vision, among other things. 4AP didn't help. Nor did a spinal cord stimulator, epidural morphine test injection (1.5 mg), intrathecal baclofen injection, or IV mexiletene. I realize it's a tough case - enough doctors have told me that just before they gave up on me - but this is the 21st century.

[Wise Young]

Have you ever tried a combination of neurontin and dextromethorphan? A recent clinical study at Massachusetts General Hospital (by a Dr. Chen) suggest that the combination is more effective than each one of the drugs by themselves. What they did was to titrate the doses of each drug to their maximum effect and then combine the two, adjusting the doses for side-effects. In a double-blind crossover study, they showed that the combination is better than each one alone. The neurontin doses were in the range of 2800 mg/day. For obvious reasons, all the patients in the study were in severe refractory pain and not adequately controlled with each drug alone.

Wise.

[smokey]

You would be well served getting another mental health evaluation, you sound nuts to me.

[Shaun]

No joke! Get yourself some marijuana roll yourself a big fat gagger take a long deep pull and see if that doesnt help ya.It works for me ...

.......\/PEACE
~Shaun~

[SCI-Nurse]

Alan - You are facing such an incredible challenge. Since Dr. Young has cited some pain research at Massachusetts General Hospital, I wanted to include their website: · Massachusetts General Hospital/Harvard - http://neuro-www.mgh.harvard.edu/forum/SpinalDisordersF

I am also wondering if you have accessed some of the pain resources that are now available. Some of these do have support groups and there is an SCI Support Group at Kernan Hosp at 410-448-6307 (contact Lisa Wilson). The Associations and Foundations at these sites do list support groups and other resources: www.theacpa.org (http://www.theacpa.org) , www.chronicpain.org (http://www.chronicpain.org) , www.painfoundation.org (http://www.painfoundation.org) I realize that this is not a solution to your daily challenge, but it may provide some incite or support to talk to others who understand what you are going through. Included in their resources may be a multidiscipline pain center; such a program would use other modalities and techniques in combination with medication to try to at least minimize or reduce somewhat the daily intensity with which you are now confronted. Having worked in a center in which this approach was used, I have seen beneficial outcomes in very difficult case. (Unfortunately, that center and its incredible programs was closed about 2 1/2 years ago) CRF

[Joe B]

Alan

Dr young has already pointed out that some medications are more effective when used in combinations. I have gotten benefit from a combination of oral baclofen and diazepam (Valium). This doesnt stop the pain but lessens it for me. You may have already tried this combination but if you haven't you should try this. By the way, is the pain worse in certain weather conditions and better in others (cold/damp versus hot/dry). You may want to move to the Southwest if so.

Best wishes from a fellow sufferer http://sci.rutgers.edu/forum/images/smilies/frown.gif

Joe B

[alan]

Dr. Young, I haven't tried that combination, but did try dextromethorphan with other meds. Neurontin gave me hallucinations, so it was stopped. So did Gabitril. Topamax caused paresthesia. There's still Trileptal and a few others - do you think one of them is worth trying along with dextromethorphan (and how much dextromethorphan - I still have the cough syrup here.)

I've tried baclofen and valium together - no help. Currently, I'm only on .5 mg clonazepam, which helps me sleep. I'd like to add an antidepressant that also helps with pain, but we haven't found a tolerable one yet. It will definitely take a combination of meds to treat this - just have to find ones I can tolerate.

I'm a regular on the MGH forums, in the chronic pain mailing list, the central pain mailing list, and the quad list, and many pain websites. I've been through numerous pain clinics (including Kernan's and Hopkins.) Lack of relief hasn't been from lack of trying. My PCP is willing to try almost anything, but the list of medication options, as I said, has dwindled to very few. We're waiting for the long-acting dilaudid to become available, as dilaudid seems to clog me less than other narcotics.

I actually tried marijuana brownies once. It made things worse - my perception of everything (including pain) was heightened.

Weather doesn't seem to make a difference in the pain levels - they're no better in dry weather than humid.

I just spoke with my doctor, He wants to try Zyprexa along with the clonazepam.

Thanks for all the advice. I'll try to contact that person at Kernan.

[This message was edited by alan on August 01, 2001 at 04:33 PM.]

[SCI-Nurse]

Alan - Have you had any evaluation by an allergist to try to determine why you react such as you do to so many medicines? I ask this from a personal perspective as I have had tremendous problems with intolerance of meds for osteoarthritis. My PCP finally referred me to an allergist specialist at Georgetown University, who was an excellent diagnostician. In his final recommendations, he has said if I absolutely needed a particular medicine that he could provide a desensitization process for that. I don't know if such a thought is helpful but thought I should share this with you. CRF

[alan]

I've actually been checked by an allergist, who gave me a clean bill of health. The side effects I tend to get from some of the meds are the ones listed as most common for the particular drug, not rashes or itching. I will ask my doc if he thinks another allergist checkup would be a good idea.

An example of a side effect problem - I can't get anywhere near what might be an effective dosage level of any opiate, because of thee constipation opiates cause. I took extra laxatives while on them, but the bowels still didn't move as they should have (even under normal circumstances, digital stim is always required - the magic bullet induces one or two spurts, but never cleans me out. Add a narcotic or other constipating med, and you can guess what happens.)

The antidepressants have their anticholinergic effects, and some also affect my vision. The ones that didn't cause side effect troubles (i.e. Zoloft and Remeron) didn't have any effect on pain. I've had similar luck with other med classes - the ones that didn't cause side effects didn't help the pains. Central pain is a difficult problem. It's worse than quadriplegia itself.

[This message was edited by alan on August 01, 2001 at 11:27 PM.]

[Sue Pendleton]

Hi again, Allen,

Not much is working, eh? I heard one woman at the TM conference who has intense burning pain say Marinol made her higher than a kite. But 2 tokes of the real stuff and the pain eased and she could concentrate. On 60 Minutes tonight they had a man making pot rice krispie treats for his Mom with cancer. They made butter from the pot and then used the regular recipe of krispies and marshmellows. You might gain weight but if you crank the pot into butter I doubt you'll get constipated. Might give it a shot...or a toke.

[cauda equina]

Do you have any hardware in your back such as rods? Sci mom who posted on the CanDo site told me one of her daughter's doctors said there are unconfirmed reports of allergic reactions to titanium. I also have nausea (and rods) and eat when I think I should rather than from hunger. I've wondered if it could be the Oxy too but my doctor thinks it's from the pain. My rods come out last of this month so I'll find out.

[alan]

No rods, no hardware of any kind. The wires of my fusion were removed back in '87, during a laminectomy of C-5 that was done to look for a syrinx as possible cause of pains (there was none, but, because of the wires, MRIs were inconclusive, so the surgery was done.)

Judging by what I've read, chronic pain can cause stomach upset, So can opiate meds like your Oxy, but that effect supposedly goes away after a bit (it did with me when I took methadone.) Do you take something for the nausea, and does it help? I took Vistaril for the first week or so when I started the methadone, which I was also never able to get to an effective dose due to constipation.

[SCI-Nurse]

Alan - if you are interested, I will email the contact information for the Doc at Georgetown. I have taken benadryl prior to taking antibiotics; if I am not sure about preservatives and fillers (my personal assessment is that is where my problem is) before eating, I take one or two AXID XR, a histamine blocker and over the counter. CRF

[cauda equina]

I've talked to the doctor about the nausea but his opinion is it's from the pain so nothing is prescribed. Some days it's really bad but most days it's just annoying. Like you, it's the pain and aching that gets me down the most. And like you, I would love to just take enough Oxy to knock it out, but the extreme constipation is not worth it.

Also, my ortho and neurosugeon believe higher doses of strong painkillers reduce the body's natural painkillers. Talking to other SCI people, they received and are still getting much more Oxy than I. I don't know who's right. I did read something about long term heroin addicts that have back problems complaining about unusually, extreme pain. But then, maybe they are trying to get prescriptions for morphine

[melliska]

hi alan, i hope you have more luck finding something to help with your nausea and pain. sam told me about a new drug, ziconotide, that is supposed to be available soon. it is supposed to be very good at managing pain without a lot of the side effects. maybe you could ask your doctor about it or look up some information on it yourself. melissa

[alan]

SCI-Nurse, I don't know how I'd get to Georgetown, but having the info on the doctor certainly couldn't hurt. Please e-mail it to me.

Stephen - so what if opiates reduce the amount of your natural painkillers? Your natural painkillers aren't killing your pain! If your doctors know of a way to increase them, great - if not, they should use what's available if it helps you, in my opinion.

Melliska - isn't ziconotide the drug that's derived from sea snail venom, or something like that?

[SCI-Nurse]

Alan - an email to you, using the one listed, came back. Please advise. CRF

[alan]

Remove the .spamaway from the e-mail address in my profile.

[SCI-Nurse]

Alan - thanks, will try that. CRF

[melliska]

i guess you're way ahead of me, alan http://sci.rutgers.edu/forum/images/smilies/wink.gif ziconotide is the drug made from some kind of snail goo (sounds appetizing doesn't it...lol) has someone suggested it to you before? (like sam maybe) i was hoping that it would be something that could help. i hope you're having a better pain day today although i know my pain never really lets up much. melissa

[alan]

I haven't seen any recent updates on the snail venom drug. We're still stuck with the old stand-bys.

[alan]

Still trying to force myself to go out, and still feeling sick and having to return home. No relief from the zyprexa and klonopin thus far.

Chronic pain is a real pain.

[alan]

Just an update - am now taking 1.5 mg klonopin at night, and will be going to 10 mg zyprexa at lunchtime. Still no pain relief, but at least I sleep most of the night.

Where's the long-acting dilaudid? It may be my last hope.

[SCI-Nurse]

Alan - It is good to get a report from you and to know that you are able to sleep through the night. I am sorry that you still haven't found any pain relief however, if your sleep is restful sleep, I would hope that that helps take the edge off of the pain during the daytime. I think all of us can tolerate so much more when our bodies are rested. Hopefully, this has been your experience. CRF

[alan]

All I can say is that 17 hours a day of pain is better than having it 24 hours a day (obviously, I don't feel any pains while I'm asleep.) I still need to find an answer to reduce the intensity of the pains when I'm not asleep, so I'm still looking,

[SCI-Nurse]

Alan - yes, I know you have dealt with this challenge far longer than one can imagine! Let's hope with time and continued research there will be something on the horizons that will improve your waking hours as well!! I wish I could offer something definitive at this point. CRF

[Sue Pendleton]

I rarely have an upset stomach but I know many do. I knew a woman back when I was in the army who had severe morning sickness. Was losing weight and this was an all day long problem. Doctors wanted her on different drugs, etc. She went to a German doctor who asked her to try sipping a mild ginger tea for a week. It didn't completely control the nausea but at least she could eat and was gaining weight. The tea needs to be made with freshly grated ginger root. Just peel back as far as needed and grate a teaspoon or so per 6 ounce tea cup. Steep for a few minutes, drain through cheesecloth or use a teaball to make the tea. Sip slowly and you can add a bit of honey. A bit. Keep the root wrapped in plastic in your fridge. Ginger tea is also supposed to be good for those with minor high blood pressure. It can't hurt you to try unlike many meds.

[alan]

The klonopin-zyprexa combo didn't have any effect on the pain levels. The klonopin has stopped making me sleep. So, I'm back in the market for other med ideas to pass on to my poor doctor.

Question for the nurses - will anticonvulsants impact the way my bladder functions? I like it the way it is - it goes when it wants to. I don't cath, and I don't get infections. There are some anticons I haven't tried yet (such as Trileptal and Keppra), but I don't want to mess up my bladder.

Another question which I asked on the pain board, but may not have been seen by people without pain - pain meds, as well as many other meds we need to take, often cause constipation. What can I do to overcome it without causing accidents? My bowel pogram is a magic bullet every third day. Should I be taking a laxative daily, or twice daily, to ensure that stool moves down like it is supposed to? At the moment, only digital stim gets stool out of me.

[The Human Cannonball]

To Sci nurses and alan, what about trying oxycontin. My next dr appt. I will be asking to try it myself.


http://www.pain.com/painexpo/exhibits/purdue/oxycontin.cfm

John/Chicago

[SCI-Nurse]

Alan, et al: Pain medication use often increases the incidence of constipation which can be even a greater challenge for folks with neurogenic bowels. Advice to avoid this include making sure you are drinking enough fluids during the day (up to 2 liters a day if you can tolerate it), watching your diet (avoiding foods that constipate such as cheese) which includes taking in some type of fiber, doing your bowel program the same time every day or every other day, staying as active as possible, and keeping your stools soft with a medication like Docusate Sodium (Colace). You should try to avoid prolonged use of harsh laxatives as your body will be reliant on it too much. Taking a Senna tablet (more gentle vegetable laxative) or two at bedtime may help for your morning bowel program. In addition, try to do your bowel program after breakfast or a hot drink (within 30 min or so). Your gastric colic reflex (full stomach exerting pressure on your colon) will also help the stool move down and you can help it even further with the digital stimulation you do.

As far as Oxycontin goes, there are so many medications available to treat neuropathic pain as many of the responses have suggested. Discuss this with your rehab MD or a pain specialist. Oxycontin does not always work for everyone especially with neuropathic pain. And, as you mentioned, this medication too is constipating so you will need to be extra vigilant in your bowel care regime. PLG

[alan]

I have a problem with eating and drinking due to the full feeling that's part of my pain syndrome. I force what food I do eat, and the same is true for drinking. I do put out at least 1.5 liters of urine daily, so I assume I'm fairly well hydrated. My activities are also limited by the abdominal and back pain, It's a vicious cycle that is depressing the hell out of me. I'm having a lot of "wish I'd die in my sleep and be out of my misery" thoughts these days. The support from this site helps.

I do my program at the same time, every third day. I eat a little something first, then wait a half hour or so before having the bullet inserted. Then I sit on the pot, and, if nothing starts after half an hour, the digital stim begins, and we get what we can.

The Zyprexa is stopped, and the klonopin reduced to see if the constipation improves. I think I'm going to ask for another try with elavil, though it didn't help in the past. Something has got to put these fires out (especially the gut and back), and let me poop at the same time!

I've tried the opiates. I'm waiting for the long-acting dilaudid to be approved in the U.S., but that's another constipating opiate, so the problem will remain the same, even with daily fiber, fruit, and softeners.

[rybread]

alan on top of my narcotics for severe pain with neurontin and tegratol, i'll take a xanax when it gets really bad. give .5 dosage a shot. it might surprise u.

c5 complete, 7-9-2000
www.Leedensport.com (http://www.Leedensport.com)

[PN]

Hi, Alan.

I don't know if this has been mentioned, but Craig Memorial does a surgery where they cauterize the nerves in your neck or back, and this may eliminate the pain. I believe that Larry Flint had this surgery, and I know another person whose name is Julie. She was shot by her boyfriend and the bullet severed her spine, leaving her disabled with intense nerve pain. Her father is an orthopaedic surgeon and she decided to go to Craig Memorial to have this surgery, and her outcome was positive. She is now an assistant district attorney in Long Beach, California.

Good luck.

PN

[SCI-Nurse]

PN - for the benefit of others reading this post, could you please identify the location of Craig Memorial? Thanks. CRF

[PN]

Craig Memorial Hospital is located in Colorado. Chris, the moderator, can probably provide you with more information about this hospital than I can.

PN

[Chris Chappell]

Craig Hospital
3425 South Clarkson St.
Englewood, CO 80110

303-789-8000

I would ask for Dr. Lammertse or Dr. Falci.

Good luck.

[metronycguy]

alan, i would hope they could find some way to make you pain free.. with tolerable side effects...

[alan]

Couldn't hurt to contact them.. I'll talk to my doc about it. Thanks.

Alan

"Was it over when the Germans bombed Pearl Harbor?"

[joshuamac]

I have compassion with the pain problem. I've been in pain for 20+ myself. Only thing that keeps me going is prayer and faith in God. In fact there are many reported medical studies about the benefits of prayer, laying on of hands and healing. When the pain gets really bad, I pray and find comfort also knowing that these momentary trials are just that, momentary. Suicide on the other hand is forever and the consequences are greater than the pain your in today, don't even consider it. Keep seeking medical advice and procedures, but ultimately look to the Great Physician "Jesus" for strength, healing, and hope.

JMM

[alan]

I looked back in my personal records - I'd actually contacted them in the past, and been given a referral by them of a doc here. After a few years, he wasn't able to help, and pretty much dismissed me.

Alan

"Was it over when the Germans bombed Pearl Harbor?"

[SCI-Nurse]

Alan - if it has been several years since you were in touch with them, it might be worth another call. As research and increased knowledge becomes available, there may be new information from which you could benefit. A thought! CRF

[Cris]

Have you or anyone used Miralax to offset the constipating effect of opiates. I find it works well for me, perhaps two doses a week and my normal suppositoty works for my bp.