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Wife to a Chronic Pain Sufferer
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Wife to a Chronic Pain Sufferer

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.
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Hello Yidori and welcome to the Pain Forum.

I'm very sorry to hear of your Husbands battle with his headaches and saddened to hear of the turmoil you're facing.  I wonder if you have been to any specialists like a Neuroligist? Has your Husband undergone an MRI with contrast? If not, then I would suggest that he does.

It sounds like he is in need of Pain Management and yes, they can be hard to come by. I have found Pain Management in the past for another member of MH and if you'd like, I could do some research for you. You would have to send me a Personal Message and tell me what city is nearest to you. Just a thought.

My heart goes out to you. Others will post as the day goes on so be patient.

Warmest regards,
Mollyrae
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Avatar_f_tn
Wow, I'm so sorry.   Can you  pin point anything that could have caused these headaches? Has he had his cervical/neck checked for any ruptured discs, bone spurs, or nerve impingement?  My father and I suffer with severe headaches. Mine have been controlled with Topamax, it has been a miracle for me.  I also take Epidrin at the onset of a headache.

I also have cut out certain foods: nuts, cheese, dairy, too much caffeine, certain chocolate. I also suffer with chronic pain so cutting out white foods like flour, bread, and foods containing flour and sugar like cakes, cookies.  At least really limiting all of the above.
I also just read about oxygen therapy.  It's supposed to be excellent for cluster tension headaches. Do a search on 'oxygen therapy for headaches.'  

Xanax is so addictive and comes with a list of side effects. I hope that isn't all your husband is taking and if he can he should try not to take it.  There should be other options such as a naturopath and trying acupuncture. I've read some studies of people having a nerve in the face that is damaged or that has scar tissue and it cause severe head pain.  It can be something as simple as that and it is being missed.

Another therapy is cranial-sacral. There are massage therapists who specialize in this therapy.  It might be another option. I don't think it is pysco-symatic but if there has been stressful events that are recent or occurred in your lives or for your husband in the past or previous to these headaches there can be a link between these headaches and the stress of what happened.  Post traumatic stress stays in our bodies and can create all sorts of physical pain.  I feel so bad for both of you and wish I could know more. It's hard being on a website.  Please do try to take care of yourself though. You can't bare the brunt of this for too long.  He must be so frustrated and pain is so hard to deal with.  But the person in pain must learn to deal with it and find ways to take care of it so we as people in pain aren't harming those we love.  As I said I suffer with severe chronic pain and I too have taken it out on my husband and loved ones over the years. I was so afraid and so exhausted from the pain. And you have such guilt when you have pain.  But you have to also realize you make the ones you love ill by taking it out on them and not helping yourself to try and get on a path of wellness.  It sounds like you and your husband have tried so much but there are so many options and other therapies out there. There are herbs, supplements that can help.  Please have an open heart and don't get caught up in these pain management doctors opinions. They don't want to fail so they don't want to see your husband.  Drop them.  

A few supplements that can help that I take are:
CQ10  start right away
Calcium and Magnesium  start right away
DLPA is very good for pain
Potassium  start right away
B complex excellent - I would start right away

There are herbs that also can help but I don't know enough about them to comment but do a search or go in to a good health food store and speak to the owner. Explain your symptoms.   Ice packs on neck and back really help as well.  DLPA is supposed to be an excellent pain reliever so that would be a great place to start.  

I hope some of this helps. I wish you both the very best.  
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Avatar_m_tn
My wife and I are both disabled and no doubt pain can cause severe problems. My wife from several back operations after a car wreck that ruined a modeling career.
Mine took years to find answers.

Many of us get off to this start with Doctors. You see several and after tests if they can't find something obvious, they deem you a nut, stressed, ect. They all write this in their notes, so naturally when you see another new Doctor's he's reading all these past reports where previous Doctor's say stress and just seem to jump on the same wagon, that it's stress or some emotional disorder. That was my case for 4 years until I got a dx and even then other symptoms that pop up I'm told stress. I went to over 43 Doctors and 4 major med schools before I got any help.

It's a maddening process. I actually never knew stress until I started dealing with Doctors. Oh, I had the stress of life like others, a divorce when young, the death of a father, a brother, ect., but none caused my body to go into pain.

Usually it a patient complains about  pain and the Doctors keep saying it's  psycosomatic pain they will send you to a psyco/neuro therapist. This person is trained to determine if the pain is real or  psycosomatic and most are good. Many times they can't come to a conclusion, but they will listen. It was only after I went through this did I get some attention. When a Neuro told me I was  psycosomatic, that the pain was real to me, but didn't really exist, I was furious inside. Course, he said not to get upset at him for saying it. I didn't argue with him. I explained I understood why he felt that way. I disagreed, but told him anything was possible, if that were the case I didn't have the ability to fix it. That seemed to confuse him and he spent more time listening. It took several visits. She actually let me do things to show her what my body was doing. She made it clear that she felt it was physical in nature with a stress componant.

Just saying, the next time, ask to see a trained therapist to determine it.
However, many times they will report...no found conclusion, but if you can prove he was basically stable before, it will play a big role. Often visits from family members, Employer letters, ect..help...They will really search your past, even your youth and I had a terrible childhood.

Still, my condition it was too late. I still can't get proper treatment, Different Neuro's disagree and life is still unbearable, but I do have severe nerve damage and severe autonomic problems. They just can't figure the cause or disease. One Neuro says RSD, one PN, ect. I probably take enough pain killers in one dose that would kill a normal person. I have a terrible Neuro, but she's in pain management and all that is available. I just learned to keep my mouth shut and get my meds when I could.

I finally lost my job, about to lose my home. So don't give up. After years of going through this I gave up with Doctor's and my condition got worse. Sometimes I would tell her about a new symptom and she just sit there and write meds or offer different meds. Usually they will want you to do all kinds of therapy, ect...most of this is just to make money.

My wife and I have learned to control our tempers..We still have our moments. I know I spent years taking it out on her, but like you, she knew me and that I wasn't making it up and hung in there. Friends and Relatives often go by the wayside. I think over time they just go numb. Frankly you learn a lot of people when you become ill. Many that you think love you just seem to have limits and finally they just don't want you around.

Just don't give up. When we lost our incomes and a bunch of other crap we lost our med insurance. Now my wife and son are moving out to another state to live with one of her friends. I'm just gonna sit here in my soon to be foreclosed home and wait until they throw me out.

Don't give up. Sometimes people get lucky and find the right Doctor.

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Avatar_f_tn
Thank you all for your support and suggestions.  It means a lot to know we are not alone.  I managed to get an appointment for us both to see our therapist who has been the most supportive so far and had the best 'ears' on Monday.  This is the one place where I am welcomed and the doctor prefers that I accompany my husband.  I can typically offer a clearer picture of our lives and how things have developed.  We also received a bit of good news that the chryroprator (she also is a specialist in massage therapy treating fribromalysia patients) received approval from our insurance company and can see my husband next week.  This doctor has seen members of my family for years and I know her well enough on a personal level that I think we will be able to work together well.  As my husband works at a computer all day (even if he is home, he still gets on the web and plays video games, one of the few things he still enjoys) and has done so for years as a web designer, I also think about stress and posture contributing to headaches.  My husabnd isn't so convinced, but I've gotten him to at least keep an open mind about it, even if his head and neck/spine MRI and C-scans were all fine.  I think I will try the cold packs this weekend and see if they offer any help.

My husband had central apnea and huge sleeping problems that were diagnosed two years ago.  Doctors visits and strange smyptoms are nothing new to us since we thought for years that he might have a heart condition even though all the doctors said he was fine and just a 'panicy'.  Things got much worse after my husband's mother passed away and he began to fear death.  Just after his diagnosis my husband underwent surgery for the apnea which was 100% successful.  He had no episodes of apnea after the surgery and he had healed.  I've noticed that since these headaches started, my husband has been snoring and since gaining a lot of weight on the medications, his apnea has returned though he doesn't seem to notice or feel any of the side effects he once had.  Our sleep center is under construction for renovations, but once they open in the end of January, his doctor has made sure he will be one of the first patients to get in there.  Even if the snoring and issues aren't causing the headaches, I think they contribute.  My husband has lost patience and can't see that far ahead to hope anything will come from it, he just wants the pain to stop now, but I keep up his journal and appointment book so we always have it ready.

My husband and I are very lucky in that we have always been very good with our finances.  Thanks in part to this and a very generous life saving left to us when my mother-in-law died four years ago, our home is paid in full.  On the outside everything looks perfect for us.  On the inside this one problem with pain has touched every aspect in some way or another.  My husband still works for the University and while he is out on dissability right now, he still contributes from home and continues to get insurance and benefits, though no salary.  We have been blessed that his boss is understanding and as long as my husband still keeps up from the house, which gives him a sense of purpose, he can keep his benefits.  I like my job and what I do, so up until receintly it has always been fine for me to make enough to cover the everyday bills with my job as well as my own benefits.  I just have found it harder and harder receintly to leave the house knowing how depressed my husband has become.  My boss knows my situation, but I don't have the ability to work from home and my contributions through my job are critical to the success of the company.  I'm one of those rare people who has a job that no one else seems to understand or know how to do.  She tells me to just take it one day at a time, and if I know my husband needs me, to take that extra long lunch or even the rest of the day off, because she can take one look at me and know just how stressed and worried I am.
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I'm sorry to hear of all the troubles you and your husband are having.  Being in pain is a horrible way to live (speaking from personal experience, unfortunately).  Before I got to read your last post, I was going to ask you if your husband had ever been diagnosed with sleep apnea, especially since you say his headaches start upon waking.  You may want to request another sleep apnea test, along with a testing of his oxygen level during sleep.  I have severe asthma and they periodically do a nighttime oxygen study on me.  I requested a study a few months ago because I was waking up most days with a horrible headache and the study revealed that during sleep my oxygen levels were dropping into the low to mid 70's (not a good thing).  They have since started me on nighttime oxygen and I have noticed a dramatic decrease in my headaches - especially the ones that I would wake up with in the morning.  It could be that even if your husband doesn't actually "stop" breathing at night, maybe his o2 levels are getting low enough because of a partial obstruction that it could be causing (or at least contributing to) his headaches.

I also have found an ice pack on the back of my neck - or even laying down and putting one across my eyes and forehead - do make a difference for me.  Sometimes if I get a really bad one, I'll do both.  If you don't have an "official" ice pack - a bag of frozen veggies works quite nicely - especially if you are laying down with it against your neck - not as hard and unyielding as an ice bag.

Best of luck with the new doctor - please keep us informed as to how you both are doing.
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Hello Yidori,

First welcome to the PM Forum. I am so glad that you found us. And secondly I apologize for my tardy response. My internet service has had technical difficulties which has often left me without a connection. I am so sorry to hear about your husband's undiagnosed pain. How awful for the both of you. He is so fortunate to have a such a supportive wife in you. That really means so much to those of us that suffer with chronic pain (CP).

Please do not take any supplements, vitamins, minerals or the like until you have checked with your PCP. What is good for one person may not be good for another. An over abundance of certain supplements can actually be harmful.

If I understand your posts correctly you will be seeing a chiropractor but no luck getting into a PMP. Keep looking. I don't understand why your husband is not a candidate for PM unless they beleive he is undiagnosed.

There are many conditions that don't show with the usual tests. Sometimes it takes a new physician to put the pieces together, a good diagnostician. I am not so sure that you should give up the diagnosis route yet. Have you seen a rheumatologist, an      endocrinologist, an ophthalmologist or an immunologist?  I may even consider an allergist. And last but not least a second or third opinion from another neurologist?

It does not make sense that nothing has changed and suddenly he has debilitating headaches. A possible key as you suggested is the death of his mother. So if that is the factor at least the headache pain should be treated. Does the visits to the therapist make his headaches better? If so you need to find a way to see the therapist more than every other month. There are therapists that will charge you according to your ability to pay. I would look into that also. A good therapist should be able to determine if his headaches are medical with a psychological component.

The two of you have a lot of work to do rather it is through therapy or to locate the medical source of his pain. It seems you are on the right track by not letting time pass and actively seeking some answers.

Continue to be assertive, even more so if you must be. Don't wait for it to be too late as Armistead1424 reports it is for him.

A D.O (Doctor of Osteopathy) that specializes in Internal Medicine and Osteopathic manipulative treatment (OMT) is another thought. That is the physician that was finally able to diagnosis my condition.

My heart too goes out to you. You can face anything together. And we are here to offer support and information. Please keep us posted. I will look forward to your updates with much interest.

Peace,
Tuck
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Avatar_f_tn
Please keep writing down how you feel. You express yourself so well and it's so therapeutic to get it out.  I have sleep apnea. It affected my health in so many ways. My weight, my pain, I had severe headaches for years until I started wearing the Cpap mask each night to bed. I also take Trazadone prior to going to bed.  I have very mild sleep apnea but I do stop breathing a few times per hour and that is enough to cause so many side illnesses like heart disease, weight gain, diabetes, migraines. One year ago I went for a 2nd sleep study and began wearing the mask. I've lost 20 pounds because now I sleep 6 hours minimum so I had energy to begin an exercise program,  my breathing is normal for the first time in 20 years, my headaches a long with Topamax medication are under control and I feel like a different person.  
People die every year of disease caused by  sleep apnea according to my sleep study doctor. I never realized how much it affected our health. If possible stress this to your husband and get with a sleep center that can evaluate him. It could be what is going on.

You mentioned so many blessings in your life. A job that you seem to be very valued in, financial security, a lovely home and it sounds like your husband has a loving, caring wife. Try to focus on these beautiful blessings. When there is chronic pain it's so hard to look past that and see the beauty around us. Try to remind him of that.  

I too worked on the computer in my profession. It was causing neck and back pain, migraines and so much tension. I am sure he is getting a lot of his pain from being on the computer and if he is on there playing games even if he enjoys it he needs to be sure it is all ergonomically set up for his needs. There are great chairs you can purchase for back and neck issues. www.relaxtheback.com is a great store. Very pricey but they have so many options for the office and home office.  

I wish you the very best and I hope the massage therapy works out.  And I really believe the sleep apnea is an issue that should be looked in to with your doctor.  I can tell you for me personally it made a world of difference for my pain and headaches.
All the best!!!!!
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Yidori I was censored for saying I hope your husband is not taking Xanax. I apologize. I was responding to what you said that he will never take it again.  I am not a doctor and am not recommending he stop or start any medication.  Please forgive me.........  I thought it was understood I am in no position to advise anyone of anything. I just have 15 years of a chronic pain and 7 surgeries.  I've taken every medication and my brother was addicted to Xanax. It was awful, it changed him as a person and he finally went to detox and stopped taking it. He acted like your husband described so I responded based on your comment.  All the best to you.
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Avatar_f_tn
I was a chronic headache sufferer until I went to the dentist who botched a root canal using a formaldehyde paste (ain't suppose to use that crap - rejected by the FDA...sargenti paste...ASK say no).  My now horrifically burning lip and chin seems to have masked most of the headaches.   Yeah, me.

From my headache days - have you tried Topamax?  It's a daily pill is an anti-seizure drug, it can have side effects and you only want to take a low dose.  It did not work for me but others I know claim it has. I lived in la la land while on it.  Dulled my senses to the point of being dangerous...but all people are different.

While I was seeing my neurologist for my burning lip and chin, she offered a headache drug call something like Micquin(?).  She said it was different from the traditional migrane (migraine) drugs that really didn't work for me.  There was a different one she gave me the second time that I can't remember.  If you want the exact names, post and I'll call the pharmacy.  You took it once when you felt the headache coming on and then another an hour later if it was still there.  It completely stopped the smaller and occassional large headaches once I felt it coming on.  Occasionally, still I get a headache when big weather fronts come in but Tylenol Sinus fixes them. It would be worth a try.  

My sister had a husband who always said he had debilitating headaches.  It ended their marriage because he wouldn't work or go to the doctor to try to fix it.  Turns out decades later they found an anyerisum (sp?) right away on an MRI that they believe had been leaking all along.  All those decades of suffering because of his pigheadedness.  
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Good News.  The sleep study center offered us an opening up about 30 miles away in another of their centers for Tuesday night.  I've heard a lot of people have good luck with Topomax (topamax), but unfortinutly we weren't one of them.  The neurolgists was convinced it would work and had my husband up to eight a day (200 mg total) and it had no effect.  We also tried three different migrain pills, but nothing worked.  
We are both home for the New Year and had a good day.  We had a beautiful blanket of snow this morning which really cheared him up, and I tried the ice packs after lunch when I could see his face starting to get red and his eye brows start to pull down.  Not sure it worked, but I had him laughing pretty good and he was joking back about it.  Time like these he is a little bit more like himself.  
His half sister also came over for a few hours to keep us company and it is good to spend time with her but also a little bit stressfull.  It was January 1st last year that we had an intervention and put her in rehab for her drug abuse.  She got started on pain killers by faking back injuries then went on to heroin and cocain.  Her excuse was it was too painful to live without her mother.  She has been clean since she got out, but she admits that it is still really hard to know that she could easily go back out on the streets and get pills, under the excuse that her brother really needed them, but she has come so far that she just couldn't lie to herself anymore.  Little girl is finally growing up I think.  She managed to graduate with her degree after rehab and has a good job now.  But, we all know that it is so easy to fall into old habits.  Especially after herion.
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I am so glad that the Sleep Study Center was able to work your husband in sooner. I hope they will be able to provide you with some answers. If not don't give up, I have a feeling you won't.

Laughter can be the best medicine. I am also glad that the two of you had at least one better day. Hang in there.

Happy 2010.
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Avatar_n_tn
Hey, Sorry to hear about what your husband is going through.  I too know EXACTLY what he is going through.  I have Chronic Daily headaches that are a pain in the a$$, they have destroyed my life and im only 24yrs old.  Mine was the result of Multiple Concussions that I have had. I get the dull throbbing pain in the occipital region of my head and in the front (forehead, behind eyes) , along with stabbing on the sides throughout the day.  its worst when i start to "get going " throughout my daily routines.  I also havent been able to work out or be active in over a year (which is horrible and this is WHO I AM).  
     I have seem some "Expert Neurologists" and tried every med there is, short list; amitriptyline @150mg, Topamax @200mg, Mirapex @10mg, Clonidine @300mcg, all the benzos, all sleeping meds, calcium channel blockers, beta blockers, etc.,. you see where im going..  but nothing helped and the MAIN problem was sleep.. I was lucky if i got 2hrs/sleep a night.. I then had a sleep study done and it showed i was unable to go past stage 2 sleep, no REM and no Deep Sleep due to the pain.
      
I know the Drs at first saw me as drug seeking and that i am faking it but then when i came in after 2 weeks of barely any sleep (prob 5-10hrs TOTAL) my doc saw me and i looked like death and then they finally believed me.  But that happened througout the first year and it took an awesome Neuro. in NC that believed me (he ordered the sleep study)  But now my only option is Pain Management.  That Neuro also told me that this could be permanent or it could go away.  So i started on Oxycontin and after a year I was take off due to tolerance (240+mg/day). They were worried i was "out of it" at that dose, but the thing that i cant make them realize is that i have so many pain receptors firing that it takes THAT much to just take the pain away.  And the weird thing that my Drs never understood is i Never Went through Withdrawals or increased pain when i came off.. But it took me over a year to finally get some that relief (actually almost 2yrs as that was the dose that helped).  

    The thing with headaches is there is no clear reason WHY you have having the pain.  And the thing i kept pressing to my Neuro. is that NO ONE knows about Concussion headaches (i know ur husband isnt head injury related) and if nothing else is working why cant i go on a pain contract with daily u/a testing if necessary (so they know im dosing right and arent messing around). So what you might want to do is go to a Headache specialist and tell them everything you've done; i actually brought speadsheets of my meds and their effect and dose, helps the doctor know exactly what've youve done.. and tell them that you have read articles stating that unfortunately if nothing else works there are also narcotics.  But the thing is you cant push it too much as they will think "drug seeking", and tell them that you dont want to go this route as you know the dangers but No ONE has tried anything else that is "outside the box" or anything to give relief, so why not use something that actually works. the thing is when its Chronic it makes it different than just acute phases and you need to find a doc that knows this and will treat it like any other Chronic Pain condition. And i stopped calling it Headaches, as a headache isnt PERMANENT so i say im having head pain to Drs and when they say headache i say its the symptoms of a headache but its CHRONIC.. Like ive said it took me a long time to get this into their minds to Finally get some relief.

i am lucky that my dad is a Pharmacist and was able to bring him along as he went to a very clinical school that has kinda helped me.. I know that some of this isnt very helpful and just mostly me saying what I did, but (as i keep saying) they dont know anything about Headaches,, i mean they know a little but not really enough..  But i do feel really bad for your husband i know exactly what he is going through and it *****... No one really knows how much DAILY head pain beats you down, and with injuries (such as myself) my emotional state is like a flippin rollercoaster, and its been over 2 years..

Also, Im on the Fentanyl Patch and am being bumped up to the 75mcg/hr patch next week; i am currently on a 50mcg and a 12mcg every 72 hrs and unfortunately due to my tolerance this isnt working anymore.  But that is the thing with narcotics is dose escalation will occur unless you take days off and deal with the pain.  I did this for a long time and it helped with not escalating but fentanyl is a different beast.  80x stronger than morphine but because its a morphine drug and not a -codone its not euphoric at all (if you have pain,and dont abuse it) as i would sometimes get a euphoric state on oxy but that was after if i took an extra dose to be completely pain free but then i was out of it.  and the truth is your husband will have to accept to live with some pain as if your pain free your not gonna be able to do anything..

Hope this helps.. PM me if you want to ask anything else..
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Avatar_n_tn
Oh Yeah, I have had a CT, MRI, MRI w/contrast to show nothing at all.  I then had blood work done (18months after injury) and my testosterone was non-existent and my thyroid was out of wack too and i have never had problems with these areas..
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Thanks Scott1122.  I understand a lot of what you are saying and our experiences with doctors has been much the same as what you described.  My husband has offered to do drug testing and sign a contract as well but to no avail.  His primary care physician called yesterday to check in and informed us that all three pain management doctors turned him (the Doctor himself) down and refused to take on a patient "with no measurable injury".  My husband has an appointment with the primary Doctor later this week and they are supposed to talk about it then.  I'm hoping his primary Doctor may take on the responsability and set up a contract himself, since he can see now that we are not going to find help elsewhere.  I like your suggestion of calling it head pain instead of headaches.  My husband is lucky in that most of the time while the pain is constant, it only stays at about a level 4-5 on a scale of 1-10.  Some days it gets higher, but with his attitude and depression causing him to worry, it escalates up to a 7-8 for days at a time ressently.

The sleep study was unfortunitly a bit of a dissaster, but one we can take in stride.  The center had a trainee that seemed to just be learning the ropes, and she was assigned to my husband as well as a second patient.  It took her two hours, three phone calls, and an actual visit from one of the nurses on call to get my husband set up and he (having had five of these back around his surgery) had to keep telling her when something wasn't right.  He didn't get much sleep before she woke him up and admitted that she hadn't been watching any of his tests... and may have deleted something by accident, or one of the readers stopped working.  She started to do the calibration in the morning and stopped after two steps to go do something else, then shut everything down.  My husband pointed this out and she very politely 'shhed' him.  As he was leaving to head home, he heard one of the nurses that had come in lecturing the young woman and saying both studies were probably going to be invalidated because she made so many mistakes.  My husband was good natured about it, but upset that we'll probably have to do it again another night.  Hopefully the center will be honest about it so the insurance company knows it wasn't our fault.  I understand the learning curve and people need hands on experience, just wish the office hadn't left this woman with no one to supervise her since she wasn't qualified to run the tests herself.  I've been in similiar situations while earning my Master's degree, and I hated it when my supervisor just left me knowing full well I wasn't ready!  But with our health system the way it is, doesn't surprised me that they wouldn't want to pay for two people when it should only take one.

The visit with the psycholigst went VERY well.  She jumped right to the point of how fustrating and angry my husband has become at being in constant pain and that he spends more time fighting and denighing that it should exist the way it is, instead of accepting and dealing with it as a part of his life.  He spends all his energy trying to find ways to make it stop, and when there isn't any or he doesn't find help, it makes his condition so much worse.  It certantly has made his depression so much worse, and all he knows right now is despair.  She thanked me for getting him in as quickly as I did, since my husband seemed so sure that nothing could possably help him anymore, that he probably wouldn't have come in on his own.  She is sending both of us in for some 'spa therapy' to find some peace, quiet, balance, and a neutral start, and told my husband to schedule with her next week so they can start meditation and teaching him some more advanced coping mechanisms.  

We talked Monday night after she suggested my husband find something to work on and focus that he knew he would enjoy and have postive feelings toward.  So we started a new 'Project" that seemed to get my husband pretty excited, and he can work on it while he is at home.  It is just a small web site where he can talk about all the movies, books, and music that he can review.  Since he is trying to stay postive, we thought it would be a good idea for him to write about all the good qualities of the media and leave out the bad reviews.  This is good for him since he still loves to watch movies, read, and listen to music, he always finds something redeaming even in stuff no one else seems to like, and this will give him an outlet to write, another activity he loves.

I just need to make sure that he continues to give it a chance.  Today it is off to the chriroprator.  Not sure if we will find any answers, but at least she is a good listener and I'm sure can offer some advice.
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Sorry to hear that the Docs are denying your husband.  it ***** with headaches as most docs dont wanna treat w/narcotics due to the possibility of creating an addict.  Unfortunately it takes patience which is VERY hard when dealing with this pain.  I agree about looking at the negatives and He tries and tries to get it to go away an nothing, i went through the same thing.. Then after a couple bad alcohol binge months i finally accepted the pain and there was nothing to do to help it.  However, its best to get him to DO things, i know when i am out running around i am not thinking about it. Even sitting at the computer (which i sadly do a lot) i am still thinking about it and that of course makes it worse.. SO i  go and take my dog on walks and am slowing trying to start to work back out.. But the key is activities, even tho it Might raise the pain, just got to relax and breathe... it will eventually go down and you know you have to "tone-it-down" a little, but when he finds out what activities he can do without putting him in the danger zone of pain then that will help GREATLY with his pain.

The negative thinking i still have problems with, like i said its hard when nothing works so you are used to rejection and after a while you start to look at life like that. However, DO NOT give up, i am still looking for other ideas to try.  I am going to my pain DR and asking for a small oxygen tank to try to use when i work out to see if that will help. As for pain levels, when i am not on ANY medications i am probably a solid 7..  so i am finally down in the 2-3 range. but it takes time,.  Also, BioFeedback it pretty good too.. It really helps you to get "in tune" with your body, and its helped to slightly lower my acute phases, i would suggest he get into that.. The psychologist is key too, as his life IS going to change and he needs to accept it and learn how to deal with his new life.

It sounds like he is doin pretty good from what ive read. but he is only 8-9months in and at this point for me i was sick of Drs and getting pain meds from people i knew.  I know the Benzos may help but i wouldnt suggest them.. Benzos have a faster dependency then opiates.. Not saying benzos are worse than opiates, but its just easier for your body to get accustom to it and then your done (well not done, but will go through Hell.. ).  I know it gives relief (w/me it was 180mg Restoril, 4mg Xanax, 4mg Clonopin).  but i knew the drug info and stopped as it wasnt theraputic.
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Well after a full week of appointments and tests, there is good news and bad news.  I say that as we finally got some results that were abnormal, but the meaning of the results themselves is not good.  Even bad news is better than not knowing anything.  My husband's sleep study came back and they managed to salvage some data from the test despite the number of mistakes made.  My husband's apnea is back and considered severe.  The problem is, the test found no signs of airway obstruction or blockage of the nose.  This means the apnea must be central and is being caused by a shut down of my husband's central nervous system, which causes him to simply stop breathing.  Having been tested so many times after his surgery, we knew this was not the case a year ago, and the severity of the apnea has increased with the headaches.  My husband's primary care physician doesn't think it is a conicidence that these things have happened together.  Both the headaches and apnea seemed to be linked to a problem in the brain with the central nervous system and the signals it is sending.  He also thinks that the apnea is not limited to my husband's sleep, he is likely suffering attacks during the day without knowing it, and this could increase the stress and pain, which he is more aware of when he is awake and feeling his environment.
The chiroprator found quite a lot of tension as well as curvature of the spine in the upper neck and it was severe enough that she has started treatment right away.  She didn't think it was abnormal given the number of hours my husband spends in front of a computer, but she did feel that it could be contributing to the problem.  It could only cause further problems for him down the road if he didn't take care of it now anyway.  Next week my husband goes to see the original doctor who performed the surgery on him for apnea to see what he thinks of the sleep study results.
My husband's primary care physician also informed him that he was able to get an appointment, though not for two months, with a headache specialist neurologist at Johns Hopkins, and since he deamed it a specialty case of urgent nessasity, the insurance company will cover the cost.  
We finally got a call back from a pain management clinic and got an appointment in February, though they stressed that they could cancel it at any point if the medical information they receive falls outside of their treatment options.  We've had that happen once already... but lets hope it works this time.
Even with out them, my husband found a nice contract to work with pain medicine patches and his primary doctor thought that was a good idea and promised to work with him to get him some relief, but he wants him to give the neck work and the therapy the psychologist recommended a try first.  He is also interested in what the ear/nose/throat doctor has to say about the apnea, and the effect those types of medications may have on the central nervous system, if that is the source of the pain.  He fears it could actually make his condition worse and wants to research more.
The fear is of course that if this is central nervous system related, there is very little that can be done successfully to remove the problem.  We have a C-pap machine coming, though since there was no obstruction found, it is more to keep the insurance company happy that we tried it than believing that it will provide relief.  I don't like to dwell on the thought too much, but I know as hard as it is for me to set aside the possability of this never geting better, or creating a more serious problem than we already have, it will be that much harder for my husband, so it is better that I tackly it along side him then to pretend that it isn't there.
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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.
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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.
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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.
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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.
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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.
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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!
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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.
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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!
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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!
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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.  
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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.
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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.
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Just got off the phone with the doctor.  The medication he calld in to the pharmacy was Metoprolol which he think will help with circulation.  He understand we tried something like this before, but this is a different type... it is another beta blocker which we havetried before, but will see.

I couldn't get him comfortable enough to prescribe any narcotics, but he agree since my husband has been off of antidepresants for quite some time to give him Tramadol to try.  He is calling in time release one pill a day for him to take.  He is convinced that this should work as well as a narcotic without being 'habit forming', he just hesistated to use it before because it has a nasty interaction with antidepressants.

Of course after, the pharmacy says 'there is a problem with this prescription' and won't fill it until they speak with the doctor AGAIN.  Doc must have left it on their machine since I can't imagine how it could have a problem when they are talking to him LIVE.

My husband is still miserable and depressed.  He doesn't think the Tramadol has anything that will work and it is clear that until he meets the PMP, he won't be getting any other help.

I will start looking for another doctor, but I don't want it to look like we are 'shopping' when we haven't tried the PMP yet.  Will have to play it by ear.
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My heart goes out to you and your husband. How awful for him. Bless your heart for your strong support. He needs you so much right now. He needs you to hope for him and to continue the fight.

In my opinion it is time to find a new PCP. This should not be viewed as doctor shopping. I'd be on the phone today. He seems indifferent to your husbands suffering. However I do encourage him to give the Tramadol a try. At this point he has nothing to lose.

Your PCP needs to do some reading on Tramadol. There are many cases of Tramadol addiction. Though it considered not as addictive as other opiates. It is a novel, central-acting synthetic opioid with weak mu-opioid activity. You may find many Web sites and other sources of information that state that tramadol is not addictive and cannot be abused. However, this is simply not true; as an opioid (morphine-like medication), Tramadol can be "habit forming."  

Your strength is admirable and so needed right now. My best to you and your husband.
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You are so right Tuckamore

After giving the wrong dosage on the Tramadol, the doctor never even called back to fix it.  He knows it is Friday and nothing will happen for us until Monday.  It may seem like only two days, an easy amount of time to adjust, but to my husband, it is two days where no doctor gave a rats behind about his pain.  We left two message and the pharmazy called twice on our behalf (we made sure they did to back up our claims) and if the end, the office did nothing.  I do feel a small pang of sympathy because he is one doctor with his own practice and has no other help... but if you are going to mess up a patients prescription is a time of crisis, you should take the five minutes to call the pharmacy before heading home... after all I'm sure if it were his son, he would take the time.

I'm plan on being very careful with the Tramadol and it's dosage when we do get it, because all the characteristics sound very much like opiates.  Even if it is not exactly like it, it sounds like something that should build trust, and is too easily abused.  In the end any relief, even if only half a day is so much better than nothing.  My husband is at least experienced/smart enough to know that as tolerence sets in or things get fuzzy, he will take more than he should, where as my memory and numbers always stay clear.  He used to get offended when I took his pills and set them out each morning and night, even taking them to work with me so he wouldn't have the temptation, now he prefers it that way.  As long as he can get the relief, he is willing to follow the rules.  Plus it means he can tell the doctors that there aren't any mess ups.  I don't allow him to break rules and we both know it is important... now to get doctors to just TRUST us... that is the real hurtle

I just hope the new pain management doctor sees that we are willing to work with them if they will help us with the real issues.  It is every day life that is effected and sometimes short terms solutions are necissary!  On the good side, in researching some of the medical benefits that my company offers for family, I found a nice site on some pain medicine alternatives to chronic pain,  Turns out the facility my husband has the appointment with also works with my company insurance and they are well versed in some of the neuro treatments and modern techniques for helping those with chronic pain.  Talking about the options and other paths in new medicine that might help prevent the need for constant/forever  opiate medicine seems to give my husband some purpose or at least something else to drawl upon.  Even if they help him short terms with drugs, there are other options they can persue with him.  There is hope.  He'd been reading up on a new book I got him about some of the new stimulation programs that work directly on the brain or at the least, help pin point the parts of the brain that trigger the pain.  He had put it down last week hoping he wouldn't need it and his doc would have the answers/help he needed.  I got him to pick it up and read to me this morning.  It Gave him a reason to hold on and refocus if only for a short wall.  Little steps I keep telling him.  He might not see a week from now, but together we can work on day by day.  Just wish we had help from the medical community!  

On one hand I fear letting him down or these things I keep showing him not working, but on the other I know if I don't keep trying, I will be defeated and what does that leave my husband.  If I loose hope there IS nothing left for him when his own mind fails to give him reason.  I think it is better to risk being wrong and to continue to search than to give up all hope all together.

Thanks for being there.  It means so much to us both.
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You are welcome. We all try to support one another. It's one of the many nice things about MedHelp's Pain Mangement Forum.

There are options for him. The key as you know is to keep the faith. Hope cannot be lost or one feels worthless.

I too am hoping that the PMP will recognize his pain and desperate situation and offer solutions. In my opinion short term narcotics should be considered at least until the other options are explored and have time to be implemented.

You are so kind to understand the PCP position. I am sure he is very busy in a solo practice. However shame on him for leaving for the weekend without clarifying your husband prescription. Two days is a long time for those of us that suffer with chronic pain. And I am sure you are correct in your assumption that he would have not done this to his son.

I have taken tramadol and it was not effective for me. It has however been very effective for others. It is worth a try. I do beleive that in time the FDA will classify it as a controlled substance. It's actions are so similar to opiates. And as I said it does have addictive properties.

It sounds like you are ding all the right things for your husband. I hope on Monday his RX can be straightened out. My greater hope is that the new PMP will have more answers, more solutions for your husband.

My Best...Tuck
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I am late to this discussion but I want to point out that the reason the PM doctors are reluctant to take your husband on as a patient is he has no definitive diagnose. The PM doctors are there for one reason and that is to treat pain. They do not search for the .
reason why your in pain but only treat it. The reason they are turning you down is NOT that they fear failing as someone mentioned.
There are PM doctors that do realize that all chronic pain Pt's do not have definitive diagnosis but do realize they are in pain and need help, so do not give up.
I have to say your husband is very lucky to have such a supportive and understanding wife. It does make all the difference.
I also want to point out that you should never take any type of medications over the counter or prescibed without asking your doctor first.
I hope he does find some relief very soon:)
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There are still options that can be explored but it sounds like the most important thing right now is to get help to let both you and your husband "step back" from the roller-coaster ride you are on - the psychologist or even a psychiatrist (they can prescribe medication and that may be very relevant in this case). The big danger now is that depression is clearly overwhelming your husband, and I imagine it must be pretty terrible for you too. Unfortunately, the roller-coaster is something many of us know only too well...and once we are on it, a lousy appointment with a single doctor can occlude the simple pleasures still available in life, as corny as that may sound. Certainly, in my case I had my first (and only) thoughts of suicide after a particularly bizarre meeting with a doctor at my initial pain clinic assessment. Thankfully my general practitioner helped me to get in fast to see a psychiatrist who told me that essentially I wasn't the problem - which made me feel mightily relieved. That feeling that you are slowly going mad as the system jerks you around is a truly surreal feeling. So, aim for stabilisation and improvement of depression even while trying to get to the bottom of the chronic pain.

Will say more later,

Regards, OtisDaMan
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Thanks Tuck, Sandee, and Otis

Some Good news.  My husband sent an e-mail to the psychologist some time over the weekend.  She e-mailed back this morning and called my husband's cell to make an appointment for today.  He turned to me and said "well at least someone other than you still seems to be listening."

She also stressed that she wanted to speak with his doctor and would keep calling through the day to get through the line.  She wants to know exactly what his reasoning is and to create new dialog between him and my husband.  She is afraid the doctor is being overly cautious and far to secretive and that this is causing a lot of the fustration and feelings of being 'dumped aside' that my husband has.  All the while his doctor probably thinks he is 'doing the right thing'.  She tends to not have a lot of faith in western medicine as the cure all, but she has always been suportive of some medication as a short term solution.  Her point, to the doctor, is having thoughts on suicide and feeling desperation to that level after an appointment, calls for IMEDIATE action.  No one should ever leave a doctor's office fealing like that.  The fact that we also had to wait on the new prescipition, well she isn't one to 'judge' without hearing both sides, some ermgency may have come up after all, but still it 'steems her up inside' that the nurses and on call doctors wouldn't help us either.  Then of course if she thinks the doctor is full of it and being far to stuborn, well she isn't one to keep quiet about it =)

She told my husband that next time he gets that upset, he needs to speak out.  She understands he felt like that was it and the door had been closed by the doctor, but you have to try anyway to express your fear, even if it means breaking down right then and there.  If you are ignored, you need to speak to someone in the front, or just drive straight to the 24/7 center for help.

He started to say that he felt a little 'silly' about it now and that he over reacted, but we both cut him off.  'Don't apoligize and think you did anything wrong or demanded too much. You are human and you are under a tremedous amount of stress.  You wouldn't say your wife was over reacting if things were reversed would you?'  Which is true.

She is a very good person.  I'm glad he could see that we aren't alone in this.
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What a great psychologist. I am so glad that he has her on his side. She brought up some very pertinent points. No one should feel suicidal or hopeless after leaving a physicians appointment. I will say it again. I think he needs to seek out a new PCP. In my opinion his dismissal of your husbands concerns, pain and feelings is unacceptable.

When we reach the point that your husband has (I've been there) we are unable to stand up for ourselves. We simply can't "speak up."  We feel unworthy and are certain that we have nothing intelligent to say. How could we ever go against or question a Doctor?? It simply isn't in us. Why challenge what he has said? We feel we will just be beaten down more and that we know we can't handle.

In my opinion your husband is dismissing his own feelings by calling himself "silly." This is common in those of us that no longer trust our emotions or mind. We rationalize, unjustly so, that if all those well trained and educated physicians cannot find the cause of our pain we must be manufacturing it. There certainly must be  something wrong with us.  At least that has been my experience.

Your husband has lost the trust in himself to "fight" the medical system. The system that often says if we can't see it, touch it or find it with all the wonderful testing available today, it can't just exist.

That is one of the reasons he is so fortunate to have you, to fight for him and to support him. You are heaven sent. Hang tough. I thank you for your continued updates.
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The psychologist managed to get through to the doctor on Wednesday.  She was a little upset that it took that long since she considered this to be an 'emergency'.  She told us "well I have good news and bad news.  The good news is I think that your doctor really does want you to get better and he is working to get you in with the Specialists at Jefferson for their best headache doctor in the field.  He faxed me a copy of what he sent to their office and you should be getting a call by next week to schedule with them.  The bad news is, you doctor seems to be under the impression that since you have 'done this sort of thing before, gotten upset over the lack of narcotic treatment, that he didn't feel that 'reacting' to it was in your best interest.  I had a long discussion about this because I find that to be unacceptable.  He may feel that he knows you well enough to say you had a temper break down, but you circumstance have changed and you need to be treated for the circumstance.  He agreed he was incorrect with his reaction, but pointed out that he did prescribe a new medication that he was fairly certain would give you the relief you were seeking, it just wasn't a narcotic.  I think it may be time to politely say your good byes and look for a new PCP, you may have out grown this man in this condition, but I suggest you continue with the treatment he has provided and continue to see me and perform your meditation practices.  At least until you can get the appointment with the specialist at Jefferson.  He did say that if you are not feeling better by Friday, leave him a message and let him know.  It might take a little time to find someone new, but I would put out some fealers.  If you seek out a second opinion, your insurance shouldn't even blink.  My only worry is loosing the referal to the PMP and to Jefferson if you upset this doctor before he has finished the process."

The doctor is of course referring to the Tramadol, which so far isn't any where near as effective as the narcotic, but with the time release formula, I don't see the high and lows.  The basic reaction is, it makes my husband tired all the time.  He doesn't feel any less pain, he just sleeps through more of it.  It also means his entire day is pretty much spent in bed or a chair.  I'd rather have the high and lows and worry about the withdrawl (withdrawal) and tolerance.  At least my husband can feel like he contributes and perform basic tasks that I think give him more purpose.

I managed to get a fax through to the doctor yesterday since the trial period for the Tramadol was up today, so I wanted to get a jump start if the doctor decided to go a different route.  I didn't want another weekend like the last.

The nurse called back within an hour and said to double the dosage.  She called in a refill and said to take two pills instead of one in the morning.

I called my husband and asked him what he thought and if he wanted to keep trying.  It is his choice and his body after all.  I can't say I agree, but he said he was willing to go double and try it over the weekend.  I dropped off the refill as soon as it was ready, and found when I got home that it put him out cold.  I'm glad he isn't driving since I'd fear that he could fall asleep behind the wheel.

It isn't as bad as the Xanax since he had horrible mood swings and periods of forgetfulness, but I can't say I'm too happy with him just passing out all the time.  My sister's birthday is today so I took the day off, and she came over this morning with her little 5 month old girl.  She remarked that my husband was in a much better mood and seemed much happier playing with the baby and making her laugh.  We went in to make tea and when we came back 15 minutes later, both my husband and baby were asleep in the rocking chair.  He was clutching the baby very tightly and he didn't rouse even as we pulled his arms away to put the baby in her swing.  I was afraid if he loosened his arms while sleeping she might fall.  It isn't ideal, but at least he seems comfortable.

We will keep going over the weekend and report back Monday.  In the mean time a hunt for a new doctor continues.
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Just a quick update.  The Tramadol has been ineffective with the pain.  The doctor worked my husband up to 2 200's and all it did was give my husband horrible nausea and dizzyness/vomiting.  So they gave him an anti nausea medication to take with it.  All that and the pain continued.  The chyroprator, good friend of my family, has been a godsent the past week, and convinced the doctor to try a much stronger muscle relaxant in hopes that it would at least relieve a lot of the tention and offer my husband some relief in his back (and she informed the doctor she was not happy that much of her work was being ruined by the vomitting and bending over the toilet for three days straight, something which unlike the snow, could have been avoided with just a little forsite!)  We stopped the Tramadol over a few days and started on two Soma, which is what I also take for my back when it goes out from time to time.  The pain in his head continues, but the rest of my husband's body feels nice and loose and it has improved his mood significantly.

We live on the East Coast and are in an area that got SLAMMED by these snow storms.  Not that we mind, we love snow and it cheers my husband up to go outside with the neighborhood's kids and build snow men and push and pull them on the sleds.  I know it makes his head hurt all the more, but it seems like it is worth it to have a little fun.  I've been able to work from home and spend more time with him during the day which turned out to be good with all the issues with the Tramadol.  The only problems we have with the snow is my husband must do all the shoveling, which the exhursion really hurts him, and we are now three canceled appointments behind, one of which was the PMP we were so looking forward to.  The good news is we managed (with a little help from the Chyroprator) to get in this Wednesday with the same doctor and the snow we are expecting tonight shouldn't be an issue.  I took off work and together, we are hoping to finally get some attention to the real problem at hand, which is the pain itself.

We are still seeing the Jefferson specialist in April as well as two appointments with two new PCPs we are considering.  By that time my husband's insurance options will open up and he can choose the slightly more expensive Open Care plan that allows him to see any doctor he wants for what ever problem.

I'm really hoping this PMP will help and not turn us away like the other two have.  The doctor is highly recomended, but so was the last one we saw that refused to treat my husband or deal with him at all after just one visit.  We are hoping that the problem then was that things were very early and my husband looked a little too desperate when he hadn't tried many of the alternatives, and the doctor just got the wrong impression.  Now we have almost a year worth of failed prescriptions, treatments, specialists visits, and evidence to bolster our case... My husband doesn't want to get high and he doesn't take medication to get high... he just wants the pain to go away.  If they will work with that, his life can be more normal again while we search for other options or to further identify this condition.  

Wish us luck!
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Such good news!  Just back from the PMP visit and it went very very well. The doctor is very nice and he seems not only to care a great deal about pain relief, but is well versed in all sorts of alternative treatments, procedures, and very interested in learning more about cases where a problem is not clearly defined.  Definitly the type of doctor we are looking for.  

One of the first things we talked about (after commenting on how wonderful it is that we had all the medications, dosages, and appointments typed up for him and we obsiviously prepared well for the appointment, making most of the questions he would ask uneeded, something he found refreshing!) was that he enjoys taking on what most doctors would call 'difficult clients'.  He feels that most doctors tend to dismiss or 'dis' patients that don't respond to the medications they prescribe, and have no identified cause, as too hard to deal with.  These types of cases can be trying with the patient always calling and upset that there is no relief that the doctor just wants to push them out.  The doctor can feel like a failure and take it out on the patient.  He enjoys the challange of these cases and prefers to focus on them more so that clear cut cases of trauma.

He started my husband on a low to mid dose percoset and told him to take up to four a day as he needs it.  If he starts to feel that the four is not enough or if the result is anything less that 75%, he can call (and he gives his own direct number to his patients, no calling the front desk and leaving a message!) to dicuss changing the dosage.  His only requirements were monthly urine tests and one blood test, something we were HAPPY to comply with.  He also wants him back of the tricyclics since he thinks that they may help lessen the amount of the percoset needed, and thus strecht it out before reaching tolerence.  He said he was going to do some home work based on a few observations he had, particulrly with the increase in pain with exercise and exhursion.  

He was happy that we already had an appointment with a headache specialist at Jefferson, since that would have been his next suggestion.  He was eger to hear what they thought of the case.  In the mean time he talked about the possible injections and treatment options that we can try to find relief and his parting words were "I want you to leave here feel assured, there is help for you, cure no cure, it doesn't matter right now.  We will keep working and even if the pain can't be stopped by finding a cause, we will find ways to get you your life back.  Feel the optomism... because it is really there."

I thought my husband was going to cry he felt so relieved.  We made the follow up apointment and after we left the office, my husband just hugged me for a good minute.  He is keeping up with the chiroprator and has an appointment for a consultation for injections and acupuncture in early March.  Both of which the PMP was supportive of researching, though he causioned us to keep an eye on insurance and costs.  There are programs that can help with the costs, but if you are not aware of them before you go in, they can't help when the insurance doesn't cover it.

I'm just so relieved and so happy, not just that we finally have some real pain relief and trust, but that this doctor seems to want to work on all aspects of the problem.  He seems like a very good asset to have on our side.  Well worth the wait to get in to see him.
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Wow what a woman you are so strong for your husband... I have read this all and my husband is going through the same stuff, nothing works, i worry as he is suicidal and i fear it could happen soon as he has had thoughts just not long ago..

Its been a few months now for you how is your husband doing???
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