headaches..so hard to treat
My name is Tammy. I have had a chronic headache for half of my life. It isn't one that just comes and goes, it is there 24 hours a day, 7 days a week. Honestly I couldn't tell anyone what it would be like to not be in pain, because I don't remember. I have been told that the diagnosis is Daily Chronic tension headache, Occipital Neuralgia type headache, and even chronic migraine. There is no reason for why it started, and no one seems to figure out what to do do help. The interesting thing is that throughout the entire time I have always known I would find something to help either decrease the pain a lot, or have the pain completely gone. If you are like me with a constant headache, you have probably wondered if there will ever really be something to help. Over the last few years I have had a chance to talk with others who have headaches. The hardest thing is that no one has a headache like another- we all have different types, different intensities, and different parts of the head that hurt.
This journey has been frustrating since I have been to see many doctors and have tried many things. It began with regular doctors while I was at college. The headaches came and went at first, but then they were there everyday. At that time I saw neurologists who told me my MRI's were normal. In 2005 my doctor said has anyone checked your heart- no one had and a small hole in my heart was found. Of course I had them fix it to prevent other issues later, but it didn't help with the headaches at all. I managed to go to all of my classes every day and even graduate with an associates degree, and then a Bachelor's degree. One time I remember being told by a friend that if my head really hurt that much why didn't I just lay on the couch all day, instead of going to classes. I didn't want to be someone who just stayed at home all the time because of pain. I wanted to be up and doing things so I kept moving forward. Even on the days when it hurts more than usual I still try to live a normal life.There are days when that is the hardest thing to do.
My head hurts in the Occipital area (the back of the head), which when the muscles are tight enough it causes my head to hurt up to the top. The other areas are the temporalis area and even behind my eyes. It is hard to really describe for people to understand. Lights do not bother me, nor do sounds bother me. I don't have nausea or vomiting when it hurts, and it I do take migraine medications it makes my head hurt more. The muscles in my neck, shoulders, and jaw always seem tight with no way to relax them.
The entire time I have always believed that there is something out there that will take care of what ever is causing the pain and the headaches will be gone. It never happens in the time that we want it it- we usually want it now and don't want to wait very long at all. In everything that I have tried and some of the suggestions that people have given I have always believed that there is an answer. That being said the reason why I am choosing to share this with you is in hopes that we can all help each other out. There are things that I have tried that others may not, and the same goes for me.
I have seen chiropractors, massage therapists, neurologists, pain doctors, reflexologists, TMJ specialist, accupuncture, headache specialist at the University of Utah, and it feels like so many more. I have had MRI's over and over again showing that things look fine. Each scan that was done just didn't give any answers and was very frustrating. Nothing seemed to really help much, at least not for very long.There was one scan that said I had a pituitary microadenoma that was pretty small but recently I had another scan and learned that it was completely gone!! The headaches are still there so that tells me that it didn't contribute to the headaches.
At first I was told to try some medications to see if that would help- Amitriptyline, then a little later I was given Vitamin B12 injections because they said I was low. Antidepressants have been tried off and on over the years. I have had 2 spinal taps which showed that the spinal fluid was normal. Other medications that were tried off and on were: Indomethicin, Midrin, Torodol (if it was really bad), Fioricet, topamax, imitrex. and then years later Cymbalta, and Lyrica.
In the last 6 years I have been trying to find something that will help the most. I have had Cervical Epidural Steroid Injection (injections in between C6-C7), Occipital Nerve Blocks, Medial Branch Blocks, bilateral blocks by C2-C3-C4, Radiofrequency of some of the nerves between C3-C5, Trigger point injections, Stellate Ganglion Block, Occipio-Arlanto injection (at the base of the neck right above the Atlas bone of the neck), there is also an injection that can be done between the Axis and Atlas bones of the neck, and lastly Botox. Some of these have helped a little bit, but not the extent that I would love. The one that didn't help is Botox- it caused all of my muscles to be tight and the pain increased. The Botox injections were done on my forehead, both sides at the temporalis muscles, occipital muscles, and sides of my neck. Oddly enough I even had a harder time swallowing sometimes. It increased the pain which made it so that after working I would come home and not want to do anything else because I was so worn out from the extra pain.
One thing that my doctor wanted me to try was an occipital nerve stimulator, but my insurance will not cover it for me to even try it. It was one of the last things that I wanted to try, but with all the other things that I have tried I needed hope with something.
So now you know my story...I have tried so many things and have heard from doctors that they don't know what else to try. This time I have a doctor who is not going to give up which means the world to me. I am not going to give up either.
I have had people tell me that I should do the ear piercing that they do for chronic migraines, go gluten free, and the list goes on... So the reason why I am starting this blog is to see if we can help each other out with things that have helped, or those that do not help.
This journey has been frustrating since I have been to see many doctors and have tried many things. It began with regular doctors while I was at college. The headaches came and went at first, but then they were there everyday. At that time I saw neurologists who told me my MRI's were normal. In 2005 my doctor said has anyone checked your heart- no one had and a small hole in my heart was found. Of course I had them fix it to prevent other issues later, but it didn't help with the headaches at all. I managed to go to all of my classes every day and even graduate with an associates degree, and then a Bachelor's degree. One time I remember being told by a friend that if my head really hurt that much why didn't I just lay on the couch all day, instead of going to classes. I didn't want to be someone who just stayed at home all the time because of pain. I wanted to be up and doing things so I kept moving forward. Even on the days when it hurts more than usual I still try to live a normal life.There are days when that is the hardest thing to do.
My head hurts in the Occipital area (the back of the head), which when the muscles are tight enough it causes my head to hurt up to the top. The other areas are the temporalis area and even behind my eyes. It is hard to really describe for people to understand. Lights do not bother me, nor do sounds bother me. I don't have nausea or vomiting when it hurts, and it I do take migraine medications it makes my head hurt more. The muscles in my neck, shoulders, and jaw always seem tight with no way to relax them.
The entire time I have always believed that there is something out there that will take care of what ever is causing the pain and the headaches will be gone. It never happens in the time that we want it it- we usually want it now and don't want to wait very long at all. In everything that I have tried and some of the suggestions that people have given I have always believed that there is an answer. That being said the reason why I am choosing to share this with you is in hopes that we can all help each other out. There are things that I have tried that others may not, and the same goes for me.
I have seen chiropractors, massage therapists, neurologists, pain doctors, reflexologists, TMJ specialist, accupuncture, headache specialist at the University of Utah, and it feels like so many more. I have had MRI's over and over again showing that things look fine. Each scan that was done just didn't give any answers and was very frustrating. Nothing seemed to really help much, at least not for very long.There was one scan that said I had a pituitary microadenoma that was pretty small but recently I had another scan and learned that it was completely gone!! The headaches are still there so that tells me that it didn't contribute to the headaches.
At first I was told to try some medications to see if that would help- Amitriptyline, then a little later I was given Vitamin B12 injections because they said I was low. Antidepressants have been tried off and on over the years. I have had 2 spinal taps which showed that the spinal fluid was normal. Other medications that were tried off and on were: Indomethicin, Midrin, Torodol (if it was really bad), Fioricet, topamax, imitrex. and then years later Cymbalta, and Lyrica.
In the last 6 years I have been trying to find something that will help the most. I have had Cervical Epidural Steroid Injection (injections in between C6-C7), Occipital Nerve Blocks, Medial Branch Blocks, bilateral blocks by C2-C3-C4, Radiofrequency of some of the nerves between C3-C5, Trigger point injections, Stellate Ganglion Block, Occipio-Arlanto injection (at the base of the neck right above the Atlas bone of the neck), there is also an injection that can be done between the Axis and Atlas bones of the neck, and lastly Botox. Some of these have helped a little bit, but not the extent that I would love. The one that didn't help is Botox- it caused all of my muscles to be tight and the pain increased. The Botox injections were done on my forehead, both sides at the temporalis muscles, occipital muscles, and sides of my neck. Oddly enough I even had a harder time swallowing sometimes. It increased the pain which made it so that after working I would come home and not want to do anything else because I was so worn out from the extra pain.
One thing that my doctor wanted me to try was an occipital nerve stimulator, but my insurance will not cover it for me to even try it. It was one of the last things that I wanted to try, but with all the other things that I have tried I needed hope with something.
So now you know my story...I have tried so many things and have heard from doctors that they don't know what else to try. This time I have a doctor who is not going to give up which means the world to me. I am not going to give up either.
I have had people tell me that I should do the ear piercing that they do for chronic migraines, go gluten free, and the list goes on... So the reason why I am starting this blog is to see if we can help each other out with things that have helped, or those that do not help.
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