All of the hopes that I had last Saturday were crushed yesterday, when after running 3 of my five total miles for the day, I ended up with the worst migraine of all early in the afternoon. It’s so disappointing. And I just don’t get it.
Frustrating is just a word to some people but it defines me lately and I absolutely hate it. I hope you’ll forgive me for going off on a tangent today but it’s Tuesday and I feel like it’s time I tell you the story or at least part of it because my story is just a beginning and a middle and I have no idea when the end will come.
Over the last 6 months to a year running has become increasingly difficult for me. Not the running in itself but the aftermath. It started with long runs in which I would inevitably get a terrible migraine a few hours afterwards. It progressed to shorter runs and eventually even walking 4 miles and running 1 would leave me with debilitating migraines.
At first I googled it and I asked everyone I knew if they’d ever had that problem and I took advice from people who had. I logged my food, my activity, I did longer warm ups, longer cool downs, I stretched, I saw the chiropractor and nothing at all worked. It was also about this time that the Chiropractor noticed my blood pressure would spike from normal to very high and then back again, randomly.
So I finally I sought help from my doctor. At first she tried prescribing different medications for my migraines but nothing really worked. My blood pressure wasn’t consistently high so prescribing medication for that was not really an option. After several visits over a few months she ordered an MRI and some bloodwork. When the bloodwork came back normal but the MRI showed some lesions she sent me to a specialist, a neurologist.
The neurologist also ordered some additional blood work and MRI studies. The bloodwork all came back within normal range as I suspected it would. The MRI’s came back with some issues in my cervical and lower spine but nothing that was too serious. The thoracic MRI was fine but there was a note about a lesion they saw located on or near my adrenal gland and a recommendation for a CT Scan as soon as possible.
I freaked out and I think anyone would have. And then I googled it because that’s just what we do these days, right? For the record I had a lot of the symptoms of an adrenal tumor but it wasn’t a definite diagnosis so I needed to get a CT Scan.
It was also about this time that my insurance company started playing doctor as well. They decided which MRI’s and CT scans they would and wouldn’t pay for and for the most part it was random. They pre-approved scans and tests and then refused to pay without any explanation. I was hung up on multiple times and left on hold for hours. It was, and continues to be a nightmare. Regardless of what my insurance company was doing, I was having that CT scan to get to the bottom of this come hell or high water.
I had the CT scan at a different imaging center and they performed an abdominal and pelvic scan for a diagnosis of ‘lump’. Since the imaging tech asked me at least 5 times what the scan was for, I got the impression they had no idea what they were looking for.
When the scan came back I was shocked to see no mention at all whatsoever of my adrenal glands. Instead the scan said the findings were ‘suggestive of celiacs disease’.
I was so confused and I even wondered if they had the right scan but then I remembered that I have had some issues with vomiting and some stomach pains but I also remember being tested for celiacs disease several years ago and being told I didn’t have it. And what about my adrenal gland, was it okay?
I saw the neurologist again before I helped the kid move and he said my adrenal glands must be fine but I asked him if he was sure and he said he could run the scan again. I asked him if he were in my shoes what he would do and he ordered another CT scan with a note regarding what they were looking for. He also ordered some lab tests for a pheochromocytoma which is a very rare adrenal tumor. I think he was trying to rule out anything that would have to do with my adrenal gland because while it would explain the headaches and the blood pressure issues, it is extremely rare. I had the CT scan on Tuesday but I haven’t gone for the lab tests yet.
The latest scan says that the ‘adrenal mass’ that was seen on the MRI was actually a problem with my transverse colon and that my adrenal gland is actually located in a different area than it would typically be seen. Based on the scans the doctors are going to wait on the lab test but in the meantime they are recommending I see my gastroenterologist for follow up and you know what that means don’t you? More phone calls to the insurance company.
Have I mentioned how hard it is to deal with the insurance company with raging migraines that occur at least 3-4 times a week? Couple that with the fact that every test only brings more questions, questions in which we don’t seem to be finding answers for and well, now do you see why I am so frustrated?
So, that’s the story. It wasn’t that I didn’t want to talk about it but rather that I didn’t have any real answers and I don’t have any idea when I will. In the meantime I’m going to keep doing what I can to stay as healthy as I can and take it one day at a time because really, that’s all I can do.
Do any of you suffer from Celiacs Disease? And if you do, how did you find out?
Do any of you suffer from exertional migraines?