Wife to a Chronic Pain Sufferer

[Yidori]

Hello.  My husband started suffering from chronic tension type headaches, day after day soon after waking up, for 8 months now.  We have had nearly 35 visits to his primary care physician, two neurologist, and a psyco-therapist.  He has tried 29 different prescriptions, all trials to see if they managed the pain, CT scans, MRIs, bloodwork, and various x-rays. All tests have come back normal and the doctors say it is psycosomatic pain.  It is real enough to him, but has no identifiable cause. The situation has become nearly unbarable, for both of us.  He lives in constant pain with only a tricyclic antidepressant which lowers the pain about 25%, and one prescription for Loratab which helped for a month and then he became tollerant so it isn't worth taking anymore, and no one will give him anything higher because of fears associated with opiates.  

We had some success with Xanax at a high dosage, however the side effects left my husband useless, stumbling around and needing constant supervision.  He was constantly angry and verbally abusive while on it, and it couldn't have been farther from the real him.  His quality of life suffered too much even if the pain was lessened.  After watching a video I took one night (because he never recalls what happened) he told his doctor he will never touch the stuff again, and the doctor hasn't given us any alternatives to try.

His primary care physician referred him to a 'very respected' pain management clinic in our area with five doctors.  One week before his appointment, the office called and canceled his appointment and told him "not to bother since they don't have services to offer him."  We called and called for a week and they were insistant that his doctor should treat him and they had nothing to offer him.  They even told his primary care doctor who referred him that they refused to take him on as a client and treat him... becuase they couldn't do anything for him.  They didn't even read his medical history!  There isn't anything either of us won't do to help him, but three pain management doctors later, and we still can't get an appointment.  It is like they are afraid to treat him!  His doctor is trying to get him in, but even he encounters resistence with the doctors saying they will not take him on since they have no services to offer a patient 'in his condition'.  My husband's doctor does not have any experience in pain management, which is why he doesn't feel comfortable taking my husband's treatment any further, but he also knows he needs help.  We just are not finding any.  Both neurologists have tried breaking the pain cycle with various medications and taking him off all medications, changing his diet, nothing worked and they too have thrown up their hands and quit.  Our therapist still continues to help us both mentally, but she is rather expensive and we can only see her once every two months.

I am so tired of being helpless.  I can't do anything to make the pain stop.  For a month now there has been no relief I can offer for the pain, no pills other than the tricyclic which leaves my husband with moodswings and unable to engage in any intimate activities.  We had planned on starting our family, but it isn't possible like this.  His depression has worsened which I'm sure doesn't help the pain, and the fustration of seeking help only to have the door slammed in your face, he doesn't mean to take it out on me, but he can't help it when I'm the only person he really sees.  Our friends and family don't understand what is going on, and most are just exasperated with the constant problems so they don't want to be around.  He thinks everyone has given up on him and that I'm no help to him no matter how much I care and love him.

Is there something else that we are missing in dealing with these pain specialists?  I've read so much about multi prong approaches and alternative testing for these type headaches, but I don't know how or where to find this type of help.  We aren't asking for drugs and whatever tests they require, homework to do, we will happily do it if they would give us a chance.  I understand how hard it is for a doctor to look at someone who is physically normal in every way with no health problems, to just treat them for pain, but it has reached a point that I worry about him taking his own life if we can't find some way to put his life back together.  I've been with this man since the 8th grade, 15 years together and I know there is something very wrong with his condition and what it is doing to his life.  He isn't making it up and if he could make it stop on his own and work it out in his head, he would.  Neither of us know what to do anyone.

Any support or suggestions would be so welcomed.  I just feel like I've run out of ideas and am forced to stand back and watch both our lives get ripped apart by this.

[Yidori]

Well the appointment did not go well at all.  I was nervous since I didn't hear from my husband after hs appointment and when I got home, I found curled up in a ball on the couch sobbing.

The doctor told him no pain pills, no oxygen, and that he had another pill that he wanted him to try for four more weeks.  He said that was all he was willing to do for now, and even though this is try number 23 in terms of treatments, he had confidence that it would help increase oxygen to the brain.  I looked up the pill, and it is little more than a antidepresant combined with a high dose Ibepropherin.  I'm not saying it won't work, but both have been tried with no effect.

He told my husband to touch base with him in a month and didn't expect to hear anything more.  Well he heard from me this morning.  My husband is telling me he has no hope and no will to live anymore and that he lost all faith he had that anyone was willing to help him instead of experiment while he stayed in constant pain.  Also, what ever dosage he put on the prescription for these news pills, the pharmacy says it doesn't exist so they wouldn't fill anything anyway.

I sent an e-mail to the pyschologist asking for advice on what to do.  I'd call but I don't want to interput her appointments and she is good about reading e-mail on her break.

I called the emergency hotline I have from my employer last night and talked to a really nice woman for about a half hour on calming my husband and clearing his head so he could focus.  She said the same thing I keep chanting in my head 'don't give up'.  Somebody has to keep fighting this broken down system, and if my husband is too weary to continue himself, I have to do it for him.  If he sees me fighting hard, it could restore some hope that it isn't over.

I don't know how we will cope if the pain management doctor turns him away.  His secretary staff is horrible and rude, but I'm hoping he will see the desperiation and depression that is linked too tightly with the constant pain to every treat one without the other.

The doctor's office closes at lunch and tht is usualy when the nurses return phone calls.  I hope they realize that there was a goof with the medication and get back to me.

[Tuckamore]

Thank you for your continued updates. I think it is great that you are finding somethings that ease your husband's head pain.

I certainly understand the physician's reluctance to prescribe narcotics though I think it is unfounded. Fear of addiction and misuse is ever forefront in many physicians minds. Study after study reveals that those with true pain have a very low incident of addiction, abuse or diversion. It is my guess that this is a personal opinion of your PCP that he carries over to the referring specialists. In my opinion if they cannot pinpoint a diagnosis there is never a good reason to allow a patient to suffer with untreated chronic pain.

I know that you are have faith in his PCP and that is very important. I beleive a second opinion would not be out of order.

[Yidori]

Thanks Geminigirl.

I remember us doing something like what you described back before we knew about the sleep apnea.  My husband had that and some sort of heart monitor that the cardiologist called in.  We have a cheaper 'bed side model' that you can clip on while working out or while asleep.  It will recover every five minutes or so (at night) then gives you average, high and low for the period.  I don't think it has dropped below 84% which the doctor said is 'low' but not what they consider to be dangerous.

My husband is meeting with his primary care doctor and I told him to ask about renting oxygen or getting some sort of trial period.  He seemed to like the idea before, so maybe he will be willing to prescribe it now.  At this point, anything that doesn't involve narcotic treatments, the doctors seem ok to try.

The problem/fear my husband has is that he won't be able to convince him to get pain medication as a back up if things continue to not help or if he can't get relief any other way.  His doctor is very reluctant if there is any other option, but after going over two months with no pain medication at all, he really needs relief.  He may not need it every day, but there are days when he needs it, and doctors seem to be very nervous about providing pills for that type of arrangement.  

We will see what happen I guess.  

[geminigirl1963]

I'm glad to hear that your husband is feeling a little better and you're finding a few things that help with the pain.

I use oxygen at night.  I have pretty severe asthma, so they periodically do a nighttime o2 testing on me and the last test I had showed that my o2 levels were dropping into the 70's at night, so my doctor ordered oxygen to be used at night.  I hadn't had any symptoms that I would have attributed to a low o2, other than I was waking up with horrible headaches quite often.  Since starting the o2 therapy at night, my headaches have all but disappeared, so yes, this may help your husband also.

I don't remember if you said what kind of insurance you have, but a lot of them will cover at least part of the cost of the compressors and o2 - of course you have it prescribed by your doctor though.  It may be that in order for him to prescribe it, they might have to do a nighttime o2 testing on your husband, even though he's had sleep studies done in the past.  the test if very simple and mine was done right in my own home - the company that does the testing brought by a little machine that had one of those o2 readers on it like they use at the doctor's office or hospital - the ones that go on your fingertip.  Attached to that was a small box that would record all the information required (heart rate and o2 levels)  You simply put the "reader" on your fingertip when you go to bed, turn on the machine (it makes no noise) and go to sleep.  In the morning, you turn the machine off, remove the reader and either call the company for pick-up or they have already arranged for this.  Again, this was something that insurance covered for me, but a) it depends on your insurance and b) it has to be "prescribed" or requested by your doctor.  I had the results in just a couple of days.

I hope this information was helpful and also hope you find some good reports adn results SOON!

[Yidori]

Hello everyone.  Things are tough but we are working through it.  The C-pap machine finally arrived and it is keeping our nights a bit 'quieter' but not helping with the headaches.  We have found that slight inversion of the head and helping blood move to the head provides some relief.  I found if my husband hangs his head over the side of the bed while I work on his neck and run his scalp, he feels about 75% better.  Of course as soon as he sits back up, the pain returns.

I was wondering if any has had luck with oxygen therapy or inversion?  The doctor and chroprator both suggested the oxygen, though the condensors are rather expensive.  I've order some of the hand held canisters, but I don't know if they are even 'therapeutic' because quite frankly most of them look like hogwash =)  As for inversion, the doctor likes the idea but the chroprator has causioned us that having the blood pool in head for too long can cause damage to the blood vessels which will complicate matters.  The inversion tables are also expensive, and she told us to try using stairs for now.  

In the mean  time we are getting into Jefferson to see the specialist there, and we still have apoointment in Feb for the pain management doctor.  Getting by without any medication at all has been tough and I want it to end soon.  Hopefully someone will jump in to help us, but in the mean time, I'm looking at anything I can research or test out to give my husband some method of relief, even temporary.

He's also started working on biofeedback and mindful meditation.  He been pretty dedicated and working on it on his own, which is good.  It gives me a break from the constant pushing and prodding.  We've given up on working out and excersize for now.  The blood moving from the head creates a constant throbbing pain.

Too me these circumstance seem pretty significant.  Why would lack of blood (and probably oxygen) in the brain cause pain, and how could it be constant.  I still haven't ruled out tumors or such even though the MRI and c-scan were normal, but other types of problems really alude me.  Hopefully if we can establish a pattern, the doctors will have a 'ah ha' moment or can find some sort of treatment.

Thank everyone for all your support.  It really helps to have a place to go and people to talk to that seem to care!

[Yidori]

Thanks Tuckamore.  While I'm dissapointed that there are such doctors out there, I am glad that we are not the only ones that get dismissed.  I did get through to our primary care physician last night and told him what happened.  He was rather dissapointed but thinks maybe this doctor is just trying to defend himself since it would be on him if something had happened during my husband's surgery to cause problems, so he might be reluctant to admit if something were wrong.

We still have the C-pap machine coming today (thanks to the primary care doctor) and he is calling my husband to schedule something next week to talk about what to do next.  He wants to give the c-pap a good three weeks to see if it helps the snoring or my husband's head, but he knows with my husband's will to go on lessening and his diasapointment growing, that it is important to see him soon.  He couldn't say if he could do anything about the pain and he is still very nervous about it, but he will figure out what is best for my husband when they meet.  He is very good that way.  He understands that I'm caring for my husband and know a lot of things/ see a lot of things that might not be aparent to anyone else, but he works with his patience on a face to face one on one basis.  That way my husband can still be honest with him and I don't feel like a nag if I have to call and leave him a message.

I don't know what we'd do if we didn't have this doctor.  We both feel dissapointed that the apnea might not be the cause and we may have to keep searching for relief, but at least we are searching and my husband knows we haven't given up yet.