Headaches and doctors that can't understand. Please help. - Headaches & Migraines Message Board

cohesion · 04-14-2008, 07:26 PM

I will start with a brief summary of my issue.

I have had severe daily headaches for 3 years now. I have seen two primary care doctors, two ear nose and throat doctors, two neurologists, and one pain management doctor. Each doctor has provided me with different conclusions about the cause of my headaches. I have tried a ton of stuff in the past 3 years. The only thing I have found that helps me is narcotic pain medicine. No real doctor will prescribe me anything other than darvocet(60 tablets/month). I am familiar with rebound headaches and I have tested this several times in the past. When I go without my medication (sometimes up to two months) I do not have any change in the consistency of my headaches except the pain is more severe. I only have one option left and its a headache center that I was informed of. The pain management doctor was quick to want to do a "nerve block" on me. That is not a procedure I am willing to risk considering I have no consistent diagnosis from multiple doctors. I have heard nothing but bad things about them too.

Finally to the point...
I can't function without pain medicine. I would like to get to the root of my headaches and solve the problem all together but if/until I can accomplish that I need to have pain medicine. I have a migraine every single day nearly all day. I am hoping someone can provide me with some guidance as to how I can find a doctor that will take me in his care and keep me comfortable. I have been getting my pain medicine in some not so orthodox ways and I do not wish to continue doing it this way.

Note: I am unresponsive to migraine medications such as maxalt/imitrex and preventative medications such as topomax and elavil.

Thanks,
I hope some of you out there can understand my situation and provide me with some guidance. I have thought that maybe I could find a reasonable primary care doctor, but I am not sure if they can treat chronic pain. My friends wife saw the same pain management doctor I did and they performed a test on her with lidocaine to see if the nerve block would be beneficial. This is just a test to see if she's a good candidate for the surgery. She got a bill for $2000 in the mail for the test. That seems to me the reason the pain management doctors are pushing the nerve blocks. The doctor was very rude to me. I was honest with him about self medicating and everything. He showed no sympathy what so ever and just said to come back if I want the nerve block. I don't particularly want parts of my head to be numb for a couple years. Although, I would consider this option if I had a diagnosis and I knew there was no other way to get to the root of the problem.

I am a college student and this whole thing has made it difficult for me to keep my grades up but I have managed. I can't always have my pain medicine and the pain is too severe to function. I'm an A student and my GPA has suffered greatly due to this ordeal. I have found I have no problem holding my life together and completing all of my obligations when I have my medicine.

Sorry for writing a novel I just wanted to be clear about the situation in hopes of getting some encouraging replies.

Cheers

hearts4120 · 04-15-2008, 09:27 AM

Hi,
Sorry for the migraine pain you are having. I was diagnosed with migraines about 17 years ago. I understand that it is life altering and no fun whatsoever. However, taking narcotics on a daily basis with no end in sight is not managing your migraines properly imo. You said that migraine meds like topamax and triptans don't work for you. There are MANY rescue migraine meds that are not narcotics that do work and work well, and there is no way someone could have went through the entire list. I encourage you to find a migraine specialist and work with them.

Lori

cohesion · 04-15-2008, 10:02 AM

Yes I haven't been through the entire list. As I said though my diagnosis is flakey. Nobody knows. Nobody knows if they are even migraines, tension headaches, sinus related, etc. I know that pain medication is not managing my headaches. I view it as no different than taking any other medication for it though. The point is I need pain medication until I can find something else that works. I've been waiting for 3 years now to find something that works and if I had to go this entire time without pain medicine I'd have zero college credits and zero money from work.

eeeee1212 · 04-16-2008, 07:44 AM

Cohesion,

I have had migraines and probably other types of headaches for almost ten years now. I understand what you are dealing with and know how hard it is. I know you are just doing what you have to do to get through school but it does seem like there has to be a better way. I have been to dozens of doctors and tried all sorts of things as well. I have been told the same thing about rebound and have gotten off all medicine for 6 months to prove that I don't have rebound. I like you still had the darn headaches--I was just miserable without any relief. I cannot take any kind of narcotics because of side effects, but I take Esgic-plus--it is the only thing that works, but again, when you have it everyday and all the time, that's not much help because I try to take it 3-4 times a week to avoid the possibility of rebound. I agree that you need to find a really good primary care doctor. My primary care doctor has tested me for more things and seems to believe my pain more than any of the neurologists or migraine specialists or pain management doctors I've been to. I also cannot take the triptans (Imitrex, etc.) or the anti-seizure medicines. I know the other post said that it is not possible to have gone through all of the drugs, but my neurologist actuallly agreed and said that I have been through the list. Due to other medical problems and side effects, there is not a preventive I can take and I have only found two things that I can safely take for the pain during an attack--Esgic and Midrin.

Here are some things that I have tried and maybe they could be of help to you. You may have already tried these things, but I thought I would just give you what I have learned from experience just in case it might help:

-first, just the obvious, which I'm sure you've done- getting rid of all migraine trigger foods, keeping regular sleep schedule, etc.
-acupuncture- Didn't help me that much, if at all , but others claim it does.
-chiropractor- didn't help me much.
-osteopathic doctor- This probably helped the most. They can do manipulation techniques to better align you and you actually do feel better. My doctor also does trigger point injections and these will nearly everytime knock the headache out for the day, sometimes into the next day. He says it is supposed to last 1-2 weeks and does for his other patients. But it is a good relief without having to take medicine because the shots he gives are natural...Look for a good osteopathic doctor who does this. They also do other treatments--acupuncture, acupressure, herbal supplements, etc. I had some of these shots from my neurologist (without the natural stuff) and my head was numb for a few hours and the headache went away but then my head was SORE the next day or two, but I haven't had that problem with the natural shots without the steroid.
-Lidocaine nasal spray- it is supposed to numb up a nerve up in your nose that is supposed to help. The trick is getting it to the right place. Sometimes it works. Ask your doctor to try this--it is cheap.
-Migrastick-this is something you can buy at a natural store or online and it is peppermint and lavendar in a little tube and you just apply it to your head. I like this not for the smell but because it cools my head and makes it feel better. I pretty much have an ice pack strapped to my head when I'm at home, but when you can't do that when you have to be somewhere this is a good subsitute because it will cool your head.
-Anti-nausea medicine will help with your headache pain as well as the nausea when you are really hurting and help you sleep without any rebound effect. Ask your doctor for this.
-Oxygen- breathing pure oxygen is supposed to help, especially with the sharp ice-pick sort of headaches. I have found that it won't exactly kill the pain the way others have described but it does help you to relax some and feel a little better and sometimes that is worth a lot.
-Botox injections- I haven't tried yet because of my side effects issue and the new FDA warnings, but some claim it works.

I hope that something out of this long post helps. I know how hard it is, but hang in there and keep searching for something that works for you. I'm sure you will find a doctor that can give you something to get through this without having to rely on constantly taking narcotics. I really believe that we will not be like this forever. I have had relatives that went through this and one day the headaches just went away--not because they did anything different. Good luck to you!

bat47 · 04-21-2008, 08:24 AM

First let me say hello. I am new to this forum. My wife has had severe headaches since 1982. We have ran through all the drugs available. Her doctor for years has a headache center in Houston, Texas. He is supposed to be one of the best in the nation. He has written many books and now does mostly lectures. One of the other major health clinics told us he gets medicine before they can. None of the medicine helped. None of the bio feed back helped. Her headaches were so bad she had a standing order at a local hospital for a shot of 20mg Nubain every three days. This is a very strong narcotic and it knocked her out for up to 24 hours. As you can imagine this has totally altered out lifestyle not to mention the financial burden.

Recently a new doctor moved back into town. We have known this young man since he was a teenager in school with my children. He is probably the most caring doctor I have ever met. To make a long story short, through him we learned of another doctor in Houston. She tried the nerve blocker and it did not work. Since that did not work, her diagnosis was something we had not heard of. There is a muscle that attaches to the base of the skull and runs out to both shoulders. There is a nerve that runs through a hole in the muscle. If that hole closes up or something goes wrong, the muscle rubs the nerve. Most of these headaches start in the back of the head and move forward. She refered us to a doctor who did operations to eliminate this problem. We decided to have the surgery. He operated on January 30. He said that everytime she moved her arm the muscle would rub the nerve. She also had a lot of scar tissue on the nerve. Since then she has only had 2 shots and those were in the early stage of healing. She had considerable pain healing from the surgery and we had not found a pain killer that would relieve the pain. The surgeon told us that it could take a long time for the nerve to completely heal. Now her headaches are controlled by medication and I believe that with time she will not have to use that. My prayer is that finally after 26 years she can return to a normal life. We had almost lost all hope of any recovery until we met Dr. B. The surgery was done by a plastic surgeon and we are still not sure if insurance will pay him. All the other bills were covered by insurance. She has had some other health issues that have not allowed us to know how much this has helped. Normally other issues would bring on a headache and would require a shot. So far this has not happened. I am not sure if this is the cure for your problems but I would suggest that you find a headache clinic that you feel comfortable with and discuss all options. This procedure will not stop migranes. Also we found out that not all headache doctors are good. We had a terrible experience with a clinic in Little Rock, Arkansas.