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New Diagnosis
Hello everyone. You might remember me from 'Wife of a Chronic Pain Sufferer'. My husband finally got in to Jefferson to see their headache specialist and we got some good results. The doctor was able to relieve the pain (for a short time) with injections into the nerve that runs down the back of the head to the neck. This led the doctor to a new diagnosis of 'NDPH' which is a fancy acronim for chronic daily headaches caused by the nerves 'acting out' and raditating pain through the head, and for no known medical reason. The nerves don't react to traditional headache treatments and typically, only narcotics provide relief. He said he has seen it several times and while each person responds to treatments differently, he does have a proceedure that takes three days which is successful in granting long term relief (a year or more) in 70% of cases. We signed up for it, but it may be a month or two before we get in.
In the mean time he sent us home with two drugs and a supplement he felt might 'help'.
This is all well and good, but one, this doctor doesn't believe in the use of narcotic pain relievers EVER, and two, the prescriptions drugs that this doctor has recomended, they have so many warnings and side effects, that I'm quite frankly a little scared to use them! The first 'wellbutrin' I have heard of used for anti depressants and shouldn't have many of the side effects that the tricyclic antidepressants have. The second drug... which clearly say on the warning you should not take with any antidepressant, is called 'Depakote'. It is a migraine preventer which the doctor seemed to think would help with stopping the nerve. This drug had ten different major warnings about liver damage and stopping breathing resulting in death/ extremem caution/ and everything else you really think twice before injesting! It intereacts with everything pretty much down to a glass of milk in the morning and causes every side effect known to man...
We have an appointment with our PMP tomorrow and I stopped my husband from taking anything until the PMP sees what has been prescribed. I also called our new primary care doctor and sent him an e-mail with the list which he is taking a look at. Our main focus is getting back to the pain relief, which we have had great success in finding with this PMP, but it apears that the headache specialist thinks we are dropping all other treatments in favor or this new risky regiment he is prescribing (including pain treatment). He made it sound like no big deal when he gave us the prescriptions, but not from what the pharmacy has given us.
Any one else ever seem to have this problem? I tried to get back in touch with the specialist, but it takes a week to get a call back (through their 'system'). The pharmacy told us that everything was fine as long as my husband didn't drink (which he doesn't) and stopped taking everything else. The wouldn't refill his pain meds since we had filled this new stuff first, and told us they'd have to get special permission (because of the acetominphen more than the opiate). Since we are seeing the PMP tomorrow anyway, we are ok to wait.
I really want to hear what the other two doctors think, but I'm a little torn between trying yet another treatment, one that is risky at that, with a doctor that doesn't seem to grasp the rest of 'living with pain'. It is easy for his to say go without pain medication for two months... been there don't want to go through it again! Of course their is the flip side that if something else works, we wouldn't need pain medication, so are we shooting ourselves in the foot by staying with what we have and not trying the new treatment.
As always, thanks for your support! No one else seems to understand where I am coming from, save for the people I know have been there :)
In the mean time he sent us home with two drugs and a supplement he felt might 'help'.
This is all well and good, but one, this doctor doesn't believe in the use of narcotic pain relievers EVER, and two, the prescriptions drugs that this doctor has recomended, they have so many warnings and side effects, that I'm quite frankly a little scared to use them! The first 'wellbutrin' I have heard of used for anti depressants and shouldn't have many of the side effects that the tricyclic antidepressants have. The second drug... which clearly say on the warning you should not take with any antidepressant, is called 'Depakote'. It is a migraine preventer which the doctor seemed to think would help with stopping the nerve. This drug had ten different major warnings about liver damage and stopping breathing resulting in death/ extremem caution/ and everything else you really think twice before injesting! It intereacts with everything pretty much down to a glass of milk in the morning and causes every side effect known to man...
We have an appointment with our PMP tomorrow and I stopped my husband from taking anything until the PMP sees what has been prescribed. I also called our new primary care doctor and sent him an e-mail with the list which he is taking a look at. Our main focus is getting back to the pain relief, which we have had great success in finding with this PMP, but it apears that the headache specialist thinks we are dropping all other treatments in favor or this new risky regiment he is prescribing (including pain treatment). He made it sound like no big deal when he gave us the prescriptions, but not from what the pharmacy has given us.
Any one else ever seem to have this problem? I tried to get back in touch with the specialist, but it takes a week to get a call back (through their 'system'). The pharmacy told us that everything was fine as long as my husband didn't drink (which he doesn't) and stopped taking everything else. The wouldn't refill his pain meds since we had filled this new stuff first, and told us they'd have to get special permission (because of the acetominphen more than the opiate). Since we are seeing the PMP tomorrow anyway, we are ok to wait.
I really want to hear what the other two doctors think, but I'm a little torn between trying yet another treatment, one that is risky at that, with a doctor that doesn't seem to grasp the rest of 'living with pain'. It is easy for his to say go without pain medication for two months... been there don't want to go through it again! Of course their is the flip side that if something else works, we wouldn't need pain medication, so are we shooting ourselves in the foot by staying with what we have and not trying the new treatment.
As always, thanks for your support! No one else seems to understand where I am coming from, save for the people I know have been there :)
Thank you for keeping us updated. I am glad the the procedure is over for your husband and hopeful that this will ease or irradiate his headaches.
It must have been very comforting to met others that have gone through what you and your husband have and to share the pain and anxiety with ppl that understand. Jefferson sounds like they are doing some great work.
It also sounds like the experience of meeting other in your situation in itself was worth the three days. It's wonderful to know that you are not alone. Many of us know that feeling. No answers and being told there is nothing wrong with you or they cannot find what is wrong with you....is a horrible situation. It's a very lonely and frightening experience.
We'll be hoping for the best for both you you and watching for further updates.
Take Care,
~Tuck
It must have been very comforting to met others that have gone through what you and your husband have and to share the pain and anxiety with ppl that understand. Jefferson sounds like they are doing some great work.
It also sounds like the experience of meeting other in your situation in itself was worth the three days. It's wonderful to know that you are not alone. Many of us know that feeling. No answers and being told there is nothing wrong with you or they cannot find what is wrong with you....is a horrible situation. It's a very lonely and frightening experience.
We'll be hoping for the best for both you you and watching for further updates.
Take Care,
~Tuck
The three day treatment at Jefferson is finished. It was pretty rough going, but the good news is, it seems to be helping. We had a little snafoo between the insurance company and the hospital because the hospital did not call the insurance company to get the propper codes, and the insurance company would not give them to my husband. All we had was a letter saying that our request for treatment was granted.
After we agreed to pay what ever costs the insurance did not cover (and the insurance company assured us that we would be fully covered) they were willing to move forward with the drug infusion. My poor husband was whiped out each day and he said the IV really burned and the drugs themselves made him very jumpy and his legs and arms burn. By the third day he was having trouble keeping food down, but they told us that was normal and would subside after a day or two. They tried to sedate him with various amounts of Benedryl and other sedatives, but he just couldn't sleep either because of the jumping of his legs or the burning he felt. But at least, he felt like his head was better and he had breaks inbetween where it seemed to go away completely. It was like he had taken his pain medication without having taken it. They sent us home with prescriptions for the same medications as well as one which can be injected. The doctor told us we should know in a month if the treatment is successfully supressing the headaches so we will not need to take the pain medication constantly, which is our goal.
The rooms they had were very small and I wasn't permitted to stay with him. I had to wait in a waiting room or at our hotel until he was finished each day (about 6 hours). What turned out to be the most beneficial was another young man who was there with his mother having the same procedure done. He was also given the same diagnosis as my husband and in chatting with his mother while we sat in the waiting area, I found another person who had all the same EXACT struggles that we have had with my husband. Her son had the same headache that came on one day and never stopped. She had taken him to every specialist she could find, done all the same tests, and heard all the same thoughts from the doctors... 'He is just depressed', 'It must be allergies', or 'All his tests are fine, it must be all in his head'. All the same things we had heard until we came to Jefferson.
Finally confirmation that this really is out there and other people have had the same experiences. We were able to trade notes about what we have tried and what has worked or not worked. He was also trying a Botox injection and his mother promised to e-mail us and let us know how it worked. Then she had not heard about the nerve block and abliation techniques, so we promised to share our future treatments and such with her in case her son could benefit as well.
Everyone at home has been very suportive and they are all very curious about this new condition. It is nice to be taken seriously instead of being dismissed like some wacko with something no one has ever heard (and quite frankly doesn't think exists in many cases!).
After we agreed to pay what ever costs the insurance did not cover (and the insurance company assured us that we would be fully covered) they were willing to move forward with the drug infusion. My poor husband was whiped out each day and he said the IV really burned and the drugs themselves made him very jumpy and his legs and arms burn. By the third day he was having trouble keeping food down, but they told us that was normal and would subside after a day or two. They tried to sedate him with various amounts of Benedryl and other sedatives, but he just couldn't sleep either because of the jumping of his legs or the burning he felt. But at least, he felt like his head was better and he had breaks inbetween where it seemed to go away completely. It was like he had taken his pain medication without having taken it. They sent us home with prescriptions for the same medications as well as one which can be injected. The doctor told us we should know in a month if the treatment is successfully supressing the headaches so we will not need to take the pain medication constantly, which is our goal.
The rooms they had were very small and I wasn't permitted to stay with him. I had to wait in a waiting room or at our hotel until he was finished each day (about 6 hours). What turned out to be the most beneficial was another young man who was there with his mother having the same procedure done. He was also given the same diagnosis as my husband and in chatting with his mother while we sat in the waiting area, I found another person who had all the same EXACT struggles that we have had with my husband. Her son had the same headache that came on one day and never stopped. She had taken him to every specialist she could find, done all the same tests, and heard all the same thoughts from the doctors... 'He is just depressed', 'It must be allergies', or 'All his tests are fine, it must be all in his head'. All the same things we had heard until we came to Jefferson.
Finally confirmation that this really is out there and other people have had the same experiences. We were able to trade notes about what we have tried and what has worked or not worked. He was also trying a Botox injection and his mother promised to e-mail us and let us know how it worked. Then she had not heard about the nerve block and abliation techniques, so we promised to share our future treatments and such with her in case her son could benefit as well.
Everyone at home has been very suportive and they are all very curious about this new condition. It is nice to be taken seriously instead of being dismissed like some wacko with something no one has ever heard (and quite frankly doesn't think exists in many cases!).
It's so good to hear that your husband that once seemed to feel "defeated" is now giddy. What great news. I hope the future will continue to get better for him.
I know when I finally had a diagnosis I was "giddy" too. It was such a releif to know that I was not crazy. It wasn't all in my head. I wasn't a drug seeker, a malinger, it wasn't "all in my head" or any of the other horrid labels the ignorant physicians tried to put on me.
It sounds almost crazy but I was happy to know I had a "dysfunction" of my SI Joint, facet disease, cysts on the nerve roots of my spine and more. How can anyone be happy to know that they truly have chronic pain????.... because it's better than all the other things I was being told or contemplated!!
And you are so wonderful to stick by your husband. I am sure he appreciates your love and devotion. I'll look forward to your continued updates.
I know when I finally had a diagnosis I was "giddy" too. It was such a releif to know that I was not crazy. It wasn't all in my head. I wasn't a drug seeker, a malinger, it wasn't "all in my head" or any of the other horrid labels the ignorant physicians tried to put on me.
It sounds almost crazy but I was happy to know I had a "dysfunction" of my SI Joint, facet disease, cysts on the nerve roots of my spine and more. How can anyone be happy to know that they truly have chronic pain????.... because it's better than all the other things I was being told or contemplated!!
And you are so wonderful to stick by your husband. I am sure he appreciates your love and devotion. I'll look forward to your continued updates.
Thanks Tuckamore. It finally feels like we are getting somewhere and found people who know what this is and want to help. Even though we know that this will still take time, everyone will keep trying until something does work or these headaches go away (which some times they do on their own after a few years.) The end all might not be in site, but it doesn't mean life has to hold still for this any more.
I've seen a huge change in my husband's attitude and he is much more comfortable talking about his head pain with others now that he has a name to put with it. Before it was 'they will just think I'm making it up or it is all in my head'. We went to a friend's wedding this weekend which is something I said we would go to, but was pretty sure we would either bow out really early if we showed up at all. We turned in before the evening was done, but stuck it out for several hours enjoying ourselves. The pills still make my husband a little tired, and he felt a little strange because all his buddies wanted to drink 'like the old days' and he had to turn them down, but we had a GREAT time seeing old friends and celebrating one of them finding a wonderful woman.
My husband decided to go back into the office today. With the pain pills and a new outlook, he feels like he can handle being around other people and working at a public location. His boss is very supportive and told him after his three day procedure next week, he is welcome to come back in with full pay and benefits. If it doesn't work as well or he has set backs, he said that is fine too. Even if he thinks he can come in two or three days a week, that is plenty to help his coworkers and get his face known again. I told my husband to take it slow, but he is giddy and raring to go out and make money again. There are only a handful of people that he interacts with and everyone knows his diagnosis now, so it isn't as akward for him to return. I told him I'll be proud of him either way, just for trying or making it happen.
I've seen a huge change in my husband's attitude and he is much more comfortable talking about his head pain with others now that he has a name to put with it. Before it was 'they will just think I'm making it up or it is all in my head'. We went to a friend's wedding this weekend which is something I said we would go to, but was pretty sure we would either bow out really early if we showed up at all. We turned in before the evening was done, but stuck it out for several hours enjoying ourselves. The pills still make my husband a little tired, and he felt a little strange because all his buddies wanted to drink 'like the old days' and he had to turn them down, but we had a GREAT time seeing old friends and celebrating one of them finding a wonderful woman.
My husband decided to go back into the office today. With the pain pills and a new outlook, he feels like he can handle being around other people and working at a public location. His boss is very supportive and told him after his three day procedure next week, he is welcome to come back in with full pay and benefits. If it doesn't work as well or he has set backs, he said that is fine too. Even if he thinks he can come in two or three days a week, that is plenty to help his coworkers and get his face known again. I told my husband to take it slow, but he is giddy and raring to go out and make money again. There are only a handful of people that he interacts with and everyone knows his diagnosis now, so it isn't as akward for him to return. I told him I'll be proud of him either way, just for trying or making it happen.
Initially I didn't understand that your husband would be hospitalized and closely monitored during this treatment. Given that factor I would opt for the treatment.
I was thinking about you and your husband last night. It must have been a huge relief to put a name to what he has been going through these many months. To finally have a diagnosis must have made him so relieved...as well as you.
Painful and seemingly mysterious symptoms go undiagnosed more often in the medical profession then they would like to admit. Ppl get labeled as malingers, drug seekers, weak, and so much more. Often when physicians cannot find a cause it's chalked up to stress. I am just gratful that he finally has a name for his symptoms.
I appreciate your updates and hope that you will continue to let us know how he is doing. He is fortunate to have your support. Bless you for standing by him through what must have seemed like a nightmare at times.
I was thinking about you and your husband last night. It must have been a huge relief to put a name to what he has been going through these many months. To finally have a diagnosis must have made him so relieved...as well as you.
Painful and seemingly mysterious symptoms go undiagnosed more often in the medical profession then they would like to admit. Ppl get labeled as malingers, drug seekers, weak, and so much more. Often when physicians cannot find a cause it's chalked up to stress. I am just gratful that he finally has a name for his symptoms.
I appreciate your updates and hope that you will continue to let us know how he is doing. He is fortunate to have your support. Bless you for standing by him through what must have seemed like a nightmare at times.
The three day treatment is an in hospital stay where they will hook up an IV into my husband and pump a concontion of three types of migraine medications and an anti nausia medication continiously for several hours each day. They hope to get them in high enough consintrations to break the nerve's reaction cycle and calm the headaches. They don't know why the combinations of the three migraine medications seem to do this. The three drugs are DHE, Toradol (sp?) and Depakote (which is the same thing he has already started in pills form at a much lower dose). They say that after a few hours you get pretty tired and the body becomes very fatigued. They have to do it in the hospital so they can monitor liver function and some other things. Not sure if it would work with concussion related trama, but then again, they have no idea why it works for NDPH (New Daily Persistent Headache).
Im glad you found a place that has a treatment plan that has a good success rate. Not sure if you remember me from your other post but i am in the same situation as your husband (only im concussion related). I have tried to occipital nerve block you mentioned as well as botox injections with no relief. But im curious what is this 3-day treatment plan consist of ? would like to know so i can bring it up to my neuro. thanks
Thanks to you all for your support.
This PMP we found is great. He sent in his nurse practioner first as he was busy with another client when we arrived, and she was less than helpfull. After my husband went through all the new information she asked us why we were there and what exactly did we expect, because she couldn't see how they could help. I asked her politely to speak with the PMP and ask him to come in with us.... we'd wait. Jefferson may have an excellent track record for ridding people of headaches, but they do nothing to treat the pain when it exists and we still need assitence in that area. She glared pretty good at me, but got the PMP who was apoligetic and said he was 'working on her people skills'.
He was pretty excited about this new treatment option and understanding of the worries we had about side effects. He told my husband that he felt the drugs prescribed were well worth a shot and as long as he didn't take anything over the counter or drink alcohol, he wouldn't worry about it. He even refilled my husbands pain meds to a Aceto-Free version so my husband can keep using them while we wait for the new medications to build up in his system. We got a break and Jefferson called back to schedule the three day treatment for the last week of the month. They apoligized A LOT for not calling us back sooner or returning the calls. Aparently the specialist had an accident with his knee, which was already injured, and was out of the office all week. They offered to send the file to the on-call doctor if we had questions, but by that point we were pretty good having seen the PMP. Our PCP already called back and said he too thought everything would be ok to take, just as long as my husband stays viligent and reports if anything gets to be too intollerable like passing out or other serious side effects.
My husband was in such a good mood that we got out for St Patricks day to our favorite Pub and had Root Beer.
We have high hopes that the 3 day treatment will break through the headaches and stop the cycle. If not we have another 4 months to really know if something is working or not. The PMP said not to worry, despite the views of his 'practioner in training' he is not about to hang my husband out to dry. He is confident that he can provide relief for the bad days and still leave enough wiggle room that is the other medications work, we can cut back on the pain pills slowly. He is more than happy to work with us and with my husband's case so much like so many other headaches sufferers they see in their practice, he gains a lot of knowledge that could help them too.
This PMP we found is great. He sent in his nurse practioner first as he was busy with another client when we arrived, and she was less than helpfull. After my husband went through all the new information she asked us why we were there and what exactly did we expect, because she couldn't see how they could help. I asked her politely to speak with the PMP and ask him to come in with us.... we'd wait. Jefferson may have an excellent track record for ridding people of headaches, but they do nothing to treat the pain when it exists and we still need assitence in that area. She glared pretty good at me, but got the PMP who was apoligetic and said he was 'working on her people skills'.
He was pretty excited about this new treatment option and understanding of the worries we had about side effects. He told my husband that he felt the drugs prescribed were well worth a shot and as long as he didn't take anything over the counter or drink alcohol, he wouldn't worry about it. He even refilled my husbands pain meds to a Aceto-Free version so my husband can keep using them while we wait for the new medications to build up in his system. We got a break and Jefferson called back to schedule the three day treatment for the last week of the month. They apoligized A LOT for not calling us back sooner or returning the calls. Aparently the specialist had an accident with his knee, which was already injured, and was out of the office all week. They offered to send the file to the on-call doctor if we had questions, but by that point we were pretty good having seen the PMP. Our PCP already called back and said he too thought everything would be ok to take, just as long as my husband stays viligent and reports if anything gets to be too intollerable like passing out or other serious side effects.
My husband was in such a good mood that we got out for St Patricks day to our favorite Pub and had Root Beer.
We have high hopes that the 3 day treatment will break through the headaches and stop the cycle. If not we have another 4 months to really know if something is working or not. The PMP said not to worry, despite the views of his 'practioner in training' he is not about to hang my husband out to dry. He is confident that he can provide relief for the bad days and still leave enough wiggle room that is the other medications work, we can cut back on the pain pills slowly. He is more than happy to work with us and with my husband's case so much like so many other headaches sufferers they see in their practice, he gains a lot of knowledge that could help them too.
I do remember you and your husband very well. Welcome back and thank you for the update.
Depakote is widely used although the side effects are rare they can be frightening. I have not taken it.
I think you are approaching the situation correctly. I too would be concerned about the combinations and returning to the life of chronic pain.
70% is a fair success rate. The surgery available for me has a 15-20% success rate and I have refused to even consider it. I would be torn if they told me 70%. I understand your dilemma.
If your husband is sensitive to medications I would be cautious of the Depakote. But again talk to your PCP and/or your PMP. I do beleive you are going in the right direction.
Please continue to keep us updated. I wish you and your husband the very best.
~Tuck
Depakote is widely used although the side effects are rare they can be frightening. I have not taken it.
I think you are approaching the situation correctly. I too would be concerned about the combinations and returning to the life of chronic pain.
70% is a fair success rate. The surgery available for me has a 15-20% success rate and I have refused to even consider it. I would be torn if they told me 70%. I understand your dilemma.
If your husband is sensitive to medications I would be cautious of the Depakote. But again talk to your PCP and/or your PMP. I do beleive you are going in the right direction.
Please continue to keep us updated. I wish you and your husband the very best.
~Tuck
Hello Yidori:
Nice to hear from you again. In regards to the medications, I take zoloft which is comparable to Wellbutrin and Depakote which for me is a treatment for Post Traumatic Stress Disorder. Together they fight the extreme depression that I've been suffering with along with the nightmares from a situation in my past. It has been working well and I am grateful that my Psychologist and Psychiatrist together ordered this medication.
I know that these medications have different uses and Headaches are one of them. I also realize that the warning label on Depakote is listed as a do not use with an Antidepressant. I feel that under a Doctors close supervision, it is alright to use that way.
Getting a second opinion is always a good idea, especially if you have concerns. So I guess what I'm saying is that I am using the two drugs and I'm fine.
I'm really happy to hear that your Husband is doing so much better. Hats off to the two of you.
My best,
Mollyrae
Nice to hear from you again. In regards to the medications, I take zoloft which is comparable to Wellbutrin and Depakote which for me is a treatment for Post Traumatic Stress Disorder. Together they fight the extreme depression that I've been suffering with along with the nightmares from a situation in my past. It has been working well and I am grateful that my Psychologist and Psychiatrist together ordered this medication.
I know that these medications have different uses and Headaches are one of them. I also realize that the warning label on Depakote is listed as a do not use with an Antidepressant. I feel that under a Doctors close supervision, it is alright to use that way.
Getting a second opinion is always a good idea, especially if you have concerns. So I guess what I'm saying is that I am using the two drugs and I'm fine.
I'm really happy to hear that your Husband is doing so much better. Hats off to the two of you.
My best,
Mollyrae
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