If you have been following my blog, you know that I was scheduled for an appointment at Cleveland Clinic. Bob and I took that long drive and it was not what I had…anticipated? Hoped? Wished for? Basically I was bluntly and honestly told that I need to learn to live with my pain; and that my new diagnosis, New Daily Persistent Headache, is very resistant to treatment.

Moreover, I was told that it is time to accept my head pain and learn to establish some quality to my life. Over the past 16 months I have been fighting and researching for solutions and help to end this pain. I am not sure I know how to accept that it may never go away. (As a matter of fact, I am told that my chances for the pain to go away at this point are slim to none.) Cleveland Clinic did have a suggestion. They offer a three-week treatment that will help me to learn acceptance, mindfulness, and physical therapy to increase the quality of my life and develop strategies for living with chronic head pain. The program (iMatch) includes infusions (IVs) for those who need to get off narcotics (I am not one). There is also group and individual therapy with various topics, and two hours of physical therapy (group and individual) every day.

Three weeks is a very long time to be so far from home. The program is outpatient, so I am responsible for my own lodging and food ($$). After a great deal of discussion and consideration, Bob and I agreed that this treatment program may just be what I need. My current neurologist, psychologist, and therapist all agree and encourage us to try the program. My insurance covers most of the treatment cost, so I am booked to go in May.

I am excited and nervous. Excited because I have developed some hope for more quality of life. Nervous because, did you read the two hours of physical therapy every day? I go for walks with Bob and our dog but not for two hours! The pain medications have helped me to gain a great deal of weight, and movement is not exactly easy because the weight and the pain. I would like to find something physical that I can do without increasing my pain level though, so I am hoping they will teach some activities that will work for me and maybe even help me lose some pounds.

So, will I learn acceptance? I hope so because I right now I want to believe there is a cure, and do not know how I can survive the rest of my life with this much pain.


Optimism Tested

It’s been a while since I have blogged. Holidays have gone by and I have been struggling with increased pain; however, the holidays were great. Seeing my family and being together is the best. We’ve had a few chances to get together since the holidays also. I love that! I am adjusting to being home alone most days but I still get lonely sometimes.

The sun is out today for the first time in what seems like forever! I do enjoy that but I have still been struggling with keeping up my usual good spirits. It’s been more than a year since the beginning of all of this head pain. I have remained hopeful that a source of the pain would be discovered and a solution implemented. I am losing this hope. So many times I have put all of my hope into a procedure and/or appointment just to be let down. After a year, it is difficult to find hope again. I am trying.

I just had another appointment and we discussed a referral to Cleveland Clinic. I have an appointment set up there for March. Although, we have to drive all the way to Cleveland for a one hour appointment. Traveling is very difficult for me and I am afraid to build up my hope. I do not want to ride all the way there for one hour and then be told I have to come back in a week or so for testing, etc. With the travel and expenses, I wonder if this will be worth it. On the other hand, I want to do everything I can to improve the quality of my life. Has anyone gone to Cleveland Clinic for a consult? Do you know how this works?

Looking for advice and hope…

A New Combination of Medication Please

November 13, 2016

After 11 months of experimenting with various combinations of medications, the doctors still cannot find one that brings my pain below a 3 in a pain level of 0-5. I have gone to the ER twice in the last two weeks and my average pain level has been running higher than usual. I am anxious for my next appointment, hoping for a better med combination. I had also been given botox for the pain the first time September 01, 2016. I haven’t noticed a great improvement but was told that it may not be noticed until after the second round, which is scheduled for December 9th. I don’t know if you have ever had botox. I was told that the shots are like a bee sting. I received 30 shots in the neck and head; half way through I almost passed out! With my trigeminal and occipital neuralgias my head is very sensitive, therefore the shots were much more painful than usual. Needless to say, I am not overjoyed to go through this experience again but I will try anything if it might bring my head pain down below a 3. Here’s hoping it works…

These past few weeks has been very painful, as I had previously mentioned. Even-though, I decided to get myself moving again. I have been having so many down (bad) days that I haven’t gotten much exercise. I have gained about 30 pounds since this head pain started; pain medicine and lack of exercise are the greatest culprits. So, I started walking again. I walk my dog (Kira, a basenji) around the neighborhood. I have a goal of walking 3-4 times a week for at least 35 minutes. I wish I could get back to yoga but any position where I have to lower my head is not doable. Although I am a vegetarian, I struggle with my weight. My biggest problem is how hungry I always am. I feel like I have tried all of the tips and tricks to no avail. My doctors tell me not to worry about my weight right now but it is difficult not to think about it when the increased weight makes movement more difficult, besides I have plenty of time to think since I am unable to work or do much. 🙂

On a good note, my kids came to visit yesterday. We had such a good time talking and playing some games. We had a nice dinner together and I appreciated all of their help and company (my husband, Bob, was on a fishing trip). My family has been such a great support through all of this. Bob has done so much for me. I am very thankful to be able to rely on such awesome support. Being in pain all of the time makes me a little crabby at times and I forget to thank all of those who have helped and supported me. This is a good time to give a shout out to my Greenville Middle School family who brought dinners, gift cards, and gifts during my first few months of going through this process. I wouldn’t have gotten through without them. I am so blessed to have such wonderful family and friends in my life.