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.

[Tuckamore]

My heart goes out to you and your husband.

I wish I had an excuse or a reason why some physicians can be such...I can't use that word...such ..so.. very insensitive.

At 6'1" your husband weight is a bit high certainly not in the range of morbid obesity.If it makes you feel any better I saw a gastrointestinal surgeon once for severe GERD and a hiatal hernia with the same results.

My gastroenterologist said I had the worse case of GERD he had ever seen. I was 20 lbs over weight. I reluctantly agreed to referral to what is considered the "best" gastrointestinal surgeon in our state. He agreed to perform the surgery, "If you really want to be cut up again"......"but if you lose 30 lbs you won't need surgery." My gastroenterologist hit the roof and the surgeon was reported. I was offered an alternative surgeon but I refused. I never had the surgery. I did lose the 20 lbs, not 30 but there was no change until my chronic pain was treated properly and I stopped taking 3,200-4,000 mgs of ibuprofen a day. You think maybe the genesis surgeon could have figured that out!!!

So they are out there. The arrogant, non-compassionate God Complex physicians. But where does that leave your husband for now? Have you been to one of the leading national clinics? At this point I would ask for a referral. It seems you have done everything else. New eyes, new ideas, new approaches may come up with a solution for your husband. If it were me I would be on the phone tomorrow.

But it's easy to say what I would do when I am not in your shoes. I do know that he needs your support and comfort now more than ever. He needs you to continue to beleive in him...and his painful symptoms. He needs you to tell him that though this is
extremely discouraging this is not the end of the line. I would not have made it to a diagnosis without my husbands constant reassurance, comfort and optimistic attitude. His glass was always half full and when mine was often empty.

I know it's difficult but hang in there. Keep posting. We are here!

[Yidori]

I'm so mad I can't see straight.  I know not all doctors are like this, but why does it seem like each one we visit now couldn't be any less caring or heartless.

The throat and nose specialist told my husband, "your over weight and if you'd loose weight you'd be fine.  I looked at the sleep study and it looks perfectly within limits.  If you want it go away, loose a few pounds.  As for the headaches, I don't know if they are a real problem, but either way, your head and sleep aren't causing them for you."

He didn't even look inside his nose or throat... nothing.  So now I have to drive a hysterical husband with the head pushed against the dash board telling me that now everyone thinks he is crazy AND fat!  My husband may be about 210 pounds, and yes after his surgery and up until about three months ago, he was 185.  He stopped excersizing because it caused his head to pound.  He went on all kinds of medicine that caused him to be too tired to do anything... and at 6 foot 1 and barrel chested, he isn't a small man by any means.

How can two doctors have such a different reaction to the same set of data.  I don't know what to tell my husband.  I can't stick up for these doctors anymore, but I don't have any alternatives to offer either.  At least now we are off to the chiroprator and maybe she can help calm my husband down.  Even if the headache had been fine this morning, this was enough to agrivate it to nasty levels.

[Yidori]

Well it is another rough day for us.  The C-pap machine was put on hold with the insurance company.  They don't feel it is nescisary since my husband has surgery, so the doctor needs to fill out a few special request forms to challange the insurance company before the machine can be delivered.  The company that provides them won't even consider driving down until the issue is resolved.  They did want another sleep study done in order to get some information that was left out of the study (thank-you intern!) in order to calabrate the machine.

Appointment with the specialist throat and nose doctor is tomorrow.  We are going to see if he thinks another study is needed before starting the C-pap machine.

I couldn't get my husband out of bed this morning.  Not five minutes after waking up the pain hit him hard and he didn't want to move or do anything.  I know that if I can't get him posative thinking, the most I can do is get some ice packs and try to get him comfortable.  I've got three very important calls for my job today, so it wasn't possable to stay with him, which I know is what he wanted.  He doesn't ask anymore, because he knows I can't.  Without my job we wouldn't be able to afford to keep going like this and he would have to return to work full time, and that is much harder to do than just wait through a day.  At least I can stay on e-mail through the meetings so he has some way of talking to me.  
I made him a nice taco lunch and left everything wrapped in the oven.  That should give him a reason to get up around lunch time, and mexican food always cheers him up a little.  We call it "chicken soup" since his mother always made him mexican food when he was sick, and it has the same effect now of comforting him.  If he can stay still and nap after that, I should be home before he knows it.

[Tuckamore]

It sounds like you have had more good news that bad. I know "finding" something, anything is more comforting than finding nothing. When I was searching for the "answers" to my pain even a tentative diagnosis was reassuring that I was not crazy and there was hope for a final diagnosis. When it came I was on could nine, regardless of what it meant or what the future held I at least knew what I was facing. There was a name for the monster that had wreaked havoc in my life for far too many years.

Your husband's PCP appears to be a source of great support for the both of you, a jewel if you will. Your husband is fortunate to have him. I count all the blessings no matter how small they may seem and your PCP is one. There are not a lot of physicians that go that extra mile above and beyond the call again and again. I am sure you are grateful for his concern, support and help.

And the PCP is correct in his concern that a narcotic could complicate the thus far  mysterious respiratory issues even more. It's my guess he is searching for effective alternative treatments.

Remember to take the suggestions on this forum for what they are, well meaning suggestions and opinions. None of us are physicians nor do we have the skills or knowledge to direct medical care or medications. What works well in one situation may be disastrous in another. I beleive you already know that but I would be amiss if I did not address it.

I understand that you have seen two neurologists. Were they connected in any way shape or form?  It may behove you to consult with a third, in another city with no connection to the past neurologists.

DE is certainly different from WI. Pain is treated as pain regardless of the source. In my state PMP treat pain of all types including from unknown causes. However they do not prescribe medications. They make recommendations but prescribing is left up to the PCP. They can even be the medical detectives.    

I appreciate your continued updates. So often someone will most and we never hear from them again. So thank you for sharing with us. I wish you both the very best and hope that definitive answers will come soon.

[Yidori]

Yes the C-pap machine can help with apnea considerably.  We had one for two years before my husand went in and had the surgery to open the throat, shorten his pallet, and then open the nose as well.  The C-pap took care of the abstructive apnea, which my husband had at the time along with the central apnea.  Prior to his diagnosis the first time for mixed apnea, we thought he had a heart problem because of the panic attacks and of course the lack of sleep, though we didn't know it, was causing lots of other issues that seemed to be unrelated, upset stomach and irritability or such.  Headaches were not a problem the first time, and during three separate studies after his surgery, my husand didn't have a single interuption at all, so he was deemed cured, even from the central apnea.  The specialist told us that after the surgery, even if he was to have a central attack (which are supposed to be few and far between) that he could recover so quickly without oxygen or anything else, that it wouldn't interfer with his life.

When my husbands central apnea kicks in, his lungs simply shut down.  His diaphram freezes up because nothing is giving them the signal to breeth.  He will stay that way as his heart slows, until the blood oxygen drops to dangerous levels signaling the brain that there is a problem/  It then shoots adrenalyn and other chemicals about to jump start the central nervous system, or worst case, waking you up/making the individual aware so they can force themselves to breeth.  No amount of opening his airways and keeping the pressure inside his system will help there BUT when you have obstructive apnea as well, when you start trying to pull in air rapidly to compinsate and recover your blood oxygen level, the airway colapses and that is when things get really tough.  

Since the surgery pretty much prevents obstructive apnea and they couldn't find it in the sleep study, my husband should have no problem pulling in air after an attack, so he doesn't notice other than a raised pulse when he has had one.  His body though likely notices, and the concern our doctor has is the number of times it is happening.  A normal person with central apnea should have one to two episodes a day/night, while sleeping my husband was having 7 an hour, which pretty much means he is in a constant cycle of attack, followed by recovery, never establishing a normal breathing pattern.

The C-pap attachment for the nose is the one we have coming Monday, and we will be trying it and giving it the best shot it's got.  Because I can hear a lot of noise coming from the nose at night, if the c-pap will help anything, it will help there.  The second surgery on the nose (which was supposed to be the easy one) didn't go very well and my husband had a lot of complications, though they seemed to have healed and resolved themselvves, just took a long time.  We'll see if through and if there is any help.  We certantly want his throat and nose doctor to weight in on the issue as well, the primary physician just wanted to give us a head start on the C-pap since he was sure that would be step one with the specialist.

Trust me at this point, we are willing to try anything and give it a good go.  It gets harder as my husband looses patience when nothing helps, but with support and a plan to keep trying what solutions come along, he is sticking with it.

[concerned621]

I'm a little confused. Prior to my diagnosis of sleep apnea and using the Cpap machine nightly I suffered with severe headaches daily.  I don't have those headaches anymore.

Instead of complicating his issues why not start with the Cpap machine and go from there. The central nervous system is so affected when we are lacking in sleep. If he is able to sleep both with a Cpap and possibly a low dose sleep medication like Trazadone 50mg he could experience so much relief.  I am not a doctor, I am basing this on my own experience.

Following up with pain management, neurologists, and appointments that take 2 months can all be done but getting the Cpap and getting use to that (which does take some time) so please tell him to be patient with that. Is a great start.  Please also tell your husband to talk to them about the mask that fits in the nose. The masks for the Cpap are large and uncomfortable. There are newer ones that fit directly in the nostrils and are light weight.  

I can't tell you how getting use the Cpap and using it nightly has changed my pain, my headaches and my energy.  

All the best.