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Avatar universal

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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1428129 tn?1283258875
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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Avatar universal
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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Avatar universal
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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Avatar universal
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 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.
Helpful - 0
547368 tn?1440541785
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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Avatar universal
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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Avatar universal
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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356518 tn?1322263642
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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547368 tn?1440541785
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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Avatar universal
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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547368 tn?1440541785
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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Avatar universal
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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Avatar universal
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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547368 tn?1440541785
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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Avatar universal
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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Avatar universal
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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Avatar universal
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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Avatar universal
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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547368 tn?1440541785
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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Avatar universal
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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Avatar universal
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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547368 tn?1440541785
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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Avatar universal
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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Avatar universal
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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