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.
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.
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.
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.
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.
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.
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!!!!!
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.
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 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.
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, 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.
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.
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..