Headache is an 8, this is getting old

For most of today my head was a 3/4, not bad. Then around 4:00 it went up to a 7 within 30 minutes. It just came racing on. I was just sitting at my desk, nothing had changed for a few hours and than boom, my pain came on strong. Within a few hours it was up to an 8 and it stayed between a 7 and an 8 for the rest of the night.
I had a hard time eating dinner. Watching TV was painful.
How is this tension? How can it just go from a 3/4 to a 7/8 within an hour?
What is the issue? It just radiates. It feels like it heats up. Is it a matter of how long I am up, up right, out of bed, awake?
It has been six months but I read about people who have had headaches for years, how can they survive? This is crazy.

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Chronic tension-type headache??

I found this on-line.

Daily chronic headache is defined as a headache that is present for more than 15 days a month and for at least 6 months a year. Three main types are noted: chronic tension-type headache, migraine chronic tension-type headache complex, and rebound (analgesic abuse) headache. How the body produces chronic daily headaches is not well understood. They have been associated with depression, anxiety, bipolar disorders, panic attacks, mouth/jaw problems, stress, and drug overuse.

My headache has been with me for a straight six months, everyday during that time. So I know that I have daily chronic headache, great, so what does that mean? The last one is one reason why I do not want to just keep taking medication. I am not overly sensitive to light so it does not seem like it is a migraine so it must be a chronic tension-type headache. So I need to look at the tension in my life.

Many things have changed in my life over the last 6 months. I had the pituitary gland surgery, it took twice as long as they thought it would take before I was able to get out of the hospital

Medication

The medication that I just started was giving me some negative side effects, (diarrhea and irritability, plus it did not seem to help at all with the headache) so I was thinking about stopping it. The medication is called Zonisamide and I build up to 75mg a day. So the first week I take 25mgs and add 25 each week until I am up to the prescribed level of 75. My wife went in and talked to the pharmacist and he took the time to explain that we really are  need to get it up to the prescribed level and be on it for at least a month to be able to determine if it is working. I am not a fan of medication to began with and with the side effects this is not something that I am really thrilled with but I want the headache to go away so I will continue with it for at least the recommended time.

Right now most of the ads on TV are political in nature, so we just mute them, but there are also a lot of ads for different types of medications. As they describe the benefits of the medicine the music in the background is up beat and soothing, then comes the side effects, those are read off fast in a voice that is flat and the music changes slightly. The main narrator comes back on with an upbeat voice to tell everyone how great the medication is for everyone.  The part that gets lost in the background are all of the things that could happen to you if you take what is being sold. Is the benefit of the medication worth taking the risks?  Listen carefully. This drug could cause various these negative effects including death. I know we all want to have our medical issues resolved, I certainly do, but at the same time, do we look at the risks compared to the rewards? Are the pharmaceutical companies so interested in making money that we have watered down the FDA, allowed them to advertise and to have drugs on the market that “may” lead to death?
Anyway I will take my medicine and I hope that something I am doing will get rid of my headache. Notice that I say headache rather then headaches. The difference is that what I have is just one continuous headache, it never goes away. It is not a bunch of headaches, but just one that just changes in degrees that has lasted 6 months up to this point.

Traveling & update for today

We traveled today and what usually happens did in fact happen and that is my headache pain went up between a 7 and an 8. The new daily medication that I am taking just seems to make me irritable. I have only been on it for three days but it has not been beneficial at all. I am thinking of not taking it anymore.
It really feels like there is something wrong with me from a medical standpoint and it is not just tension. The problem is nothing is coming up on the MRI SCAN that would indicate a problem. The doctor feels that it is just tension. How can you have a tension headache every moment that you are awake?
I have used the air machine for 3 nights now and it is getting a little easier but it is not something that I enjoy. I have not seen any benefit from using it at this point, but maybe that is not the point. It is more of a long term process rather then something that will impact me in a few nights. I am hoping that I will be able to get some better rest once I get used to it, time will tell.
I was not planning on retiring for 4 more years. This means that my retirement is not going to be what I was planning on it being. My wife and I had a lot of plans for when I retired and now with the medical issues and having less money we are going to have to make some lifestyle changes and some long term changes with our goals and expectations for our retirement years.
I did the elliptical for 22 minutes today, it seems to be dragging on the right side so I will see if my son can help me to fix whatever the issue is.
Today over all was painful. I was around a 6/7 for most of the day. A negative trigger is traveling, I no longer drive but just sitting in the car increases my headache. A positive trigger is being in a cool area. If I move from one place that is hot to somewhere a lot cooler it takes about 45 minutes and the pain will drop a level or two.
One thing that I mentioned to the doctor was that my fingers have been going numb. When I am on the elliptical for about 10 minutes the go numb. When we are in the car and I am holding my wife’s hand they will go numb in about 15 minutes. Neither of these occur when I am holding on to something tightly. But the doctor did not seem to think that it was any big deal.
One aspect to my head that I have not mentioned is that it feels at times that it is radiating from deed within my head. When this happens I know that the pain is going to increase. The pain itself is like a vice grip is on my head, right side and left side, and someone is squeezing it tighter and tighter so that by the end of the day the pain is extreme.

Post pituitary tumor surgery recovery

Back in 2006 I had some issues with nerve pain that was caused by a compressed disc in my back. I had an MRI and they also found a tumor on my pituitary gland. In October 2013 I had another MRI to see if it had changed. The tumor had dramatically increased in size and the doctors recommended that it be removed. I had the surgery on March 7. I had a lumbr drain for a brain fluid leak that kept me on my back for 6 days. I also had a terrible headache that they said was part of the healing process. Another issue was that my vision seemed to have changed, I was not seeing double but I was having a hard time focusing; however, they indicated that it would go back to normal and to not get a new prescription. (I did end up having to get new glasses as my eyes never did go back to the way they were before the surgery).

The headache did not go away and after two months I had a blood patch with the goal of sealing any CLF leak. one of the issues that I was experiencing was it felt that my brain would hit my forehead when I would bend over and after the procedure this “feeling” was no longer present. However the headache was still there. On a scale of 1 to 10 it would star off in the morning at a 3 and by the end of the day it would be as high as a 9. I would lay on my side in a fetal position with my hands on my head in pain. I had a second blood batch but it did not have any impact on my head.

I tried varies pain pills (extra strength Tylenol, Excedrin and Advil). None of them had any effect on the pain. I tried caffeine and no caffeine. I was passed on to a headache specialist   So far I had been on the following medications (Nodol 40mg twice a day, Zonisamide 25mg working up to 3 in the morning, Isomethept-Dichloralp-Acetamin up to 5 in a 24 hours, Butal-Acetaminophen-Caffeine ) none of them have had any real impact on my headache. I also am doing physical therapy and the best thing I got out of that was using a tennis ball on the back of my head to tear apart the muscles. I am not sure why this helps, is it the muscles that need to be worked, trading one pain for another, or just the action of moving my head back and forth like a baby’s crib. I can lay down and roll my head over the tennis ball for several hours at a time before I finally am able to get some rest. I also went in for a sleep test and I am now using a CPAP. I do feel that there is a real issues with my sleep (a lot of it I feel is due to the fact that I am over weight) but I also feel that these programs are set up to get as much money from the insurance companies as possible. $2,000 for the machine is incredible.  But I have started the process and up to this point my body is still trying to get used to it. I have started to exercise (I use an elliptical for 15 minutes twice a day) I have lost some weight but it has not helped my headache  I also cut out all sugar  I also just drink water, no juice, soda, coffee, tea or anything else  I have never been a drinker and I have never smoked

When I got home my goal was to get back to work. My job was very stressful and getting more so each year. I had the same job for the last 20 years in the financial industry and with all the new regulations it was no longer as enjoyable as it had once been. However after three months and my recovery was not going well and I did not feel that with the medical issues that I was still dealing with that I would be able to continue with the level of stress so I took an early retirement.

When I first got home I was only sleeping about 3 hours a night because of the pain once I started to use the tennis ball I was able to increase that to 5 to 6 hours  Now that I have the CPAP I am back down to 4 – 5 at thie point  I think that as I get used to the new process that it will go back up

The surgery has also changed a lot of the hormones that are monitored and impacted by the pituitary gland, this alone has been a real challenge. I had them tested before the surgery and than after. Although they are still all within the “normal” level they clearly changed. Also my vision never came back to what it was before the surgery. I ended up having to get new glasses. My near vision had changed (was better) so much that my eye doctor was concerned that I could have diabetes. But the tests showed that I was now at the low end for my sugar level.

I have a headache every day, not just a few times a month, everyday. Before the surgery I rarely would have a headache. It usually starts off at a 3 and by the end of the day it increases to a 7 or 8 by the end of the day. This is the scale that I am using:

1. Minimal. The pain is hardly noticeable

2. Mild. Low level of pain. Aware of my pain only when I think about it.

3. Uncomfortable. Pain bothers me but I can ignore it most of the time

4. Moderate  I am constantly aware of my pain but I can continue most daily activities.

5.  Distracting. I think about my pain most of the time. I cannot do some of the activities I need to do each day.

6.  Distressing. I think about my pain all of the time. I give up many activities because of my pain.

7.  Unmanageable. I am in pain all of the time. It keeps me from doing most activities.

8. Intense. My pain is so severe that it is hard to think of anything else. Talking and listening are difficult.

9. Severe. My pain is all I can think about. I can barely talk or move because of my pain.

10. Unable to move. I am in bed & cannot move due to my pain

I have not hit a 10 and I am never as low as a 2. Most of the time it is between a 4 and a 7 depending on the time of day.   There has not been a single day or even a single hour that my head is not in pain, it is all a matter of degrees.

I feel that my current doctor, the headache specialist, feels that the pain has nothing to do with the surgery and that it is all due to “tension”. The fact that it started right after my surgery and that I did have a history of headaches does not seem to factor into her conclusion. I have only had three appointments with her but I feel that she does not believe me.

I just want the pain to go away. I also would like to get off all of the medications, it feels like the side effects might end up being more of an issues then ant benefit that I am currently getting from using them.