It’s frustrating but running still makes me sick

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.

frustratedOver 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.

Don't give up!

I’m trying not to, I swear!

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’.

what the hell is this shitWhat?

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.

Oh great

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?

16 thoughts on “It’s frustrating but running still makes me sick

  1. I had a coworker who had celiacs…and other food restrictions. Basically, she should eat vegan.

    I really hope you get some clearer answers soon and that the insurance company get their shit together!

    • I really wanted it to be something I could just have a quick fix for like surgery or a pill because celiacs, no, I don’t think I want that. I’m really hoping that isn’t what it is…

  2. oh wow 🙁 I can only imagine how frustrating this is. I have several issues but nothing that time and patience (and a good chiro most likely) won’t heal. Not that I want YOUR situation to put mine in perspective, but it does by default. I would be very angry too – not just with the insurance company but also at some of the situations (how could they NOT know what they are looking for when you go for a scan???). All I can say is, keep the faith that a clear answer is going to come and that eventually you will run again, without being sick. The not running part sucks already but I think most importantly finding out what is really wrong and getting treated is the part that needs the most focus. I hope those answers come very, very soon.

    • Thank you so much. I am thankful that at least I can walk without migraines for now and I am trusting in my faith that there is a doctor out there somewhere who really wants to get to the bottom of this and help me find the answer. Until then, one day at a time. 🙂

  3. I’m so sorry to read this! I just started reading here a few weeks ago, so I didn’t know about your history. I hope you get some answers soon.

    About three years ago, I had a headache that lasted for about a year. Sometimes it would be migraine quality, other times not, but it was always. there. I went through a lot of the same things you are doing – lots of different medications, an MRI, dietary changes – you name it, I tried everything. It was a really bad year.

    Eventually, it started tapering away. I’d have a day or two a month without a headache, then a day or two a week, and now I’m at what is I think my new normal – probably five to seven days a month with a headache – which is eminently doable, compared. And only a couple migraines since then. During this time, I quit drinking all caffeine, cut out anything with MSG, and quit drinking red wine. I also went vegan – not for health but for ethical reasons. I have no idea if any of these things were a contributing factor, but I’m going to keep doing them all!

    They never gave me a conclusive diagnosis, but I think a lot of it was stress related (I lost my mom that year, and in her absence, became caretaker for my grandmother who was suffering from Alzheimer’s). I had always been prone to headaches, and that year my body just decided I should have one all the time for some reason.

    I hope that you find relief soon – chronic pain is debilitating in so many ways. It really can cut down on your quality of life! I’ll be crossing my fingers for you!

    • Bless your heart, I cannot even imagine having a headache for an entire year. I so look forward to the little breaks in between, without those you must have been in so much pain. You must be a very strong person to push through that and find the things that work for you and I hope those 5 to 7 days eventually whittle down to none. And thank you for commenting, it really means a lot to hear from people who have or are experiencing similar things.

  4. Oh, my word–what a crazy nightmare this must be for you! I wish insurance companies would stay out of it and just pay their fair share when professionals order important tests. Celiac runs in my family–I would be really surprised if that is what is causing your issues but who really knows. The gold standard to Dx celiac is an endoscopy. I am just keeping you in my thoughts and prayers. Sending you love and keep your chin up, girl. You are strong, you are a fighter, you will get through this. P.S. I know it is NOT the same thing but as a former “run only” athlete who switched to triathlete do any other sports aggravate it? Can you swim or cycle (or row or do weights). I think walking has been OK, yes?!?

    • Thank you so much for your kind words Susan. And as for other sports, anything that requires a lot of exertion and heavy breathing or sweating seems to cause the migraines. I have been able to walk and so far I’ve only had one migraine from walking so I hope I can at least continue with that until we get to the bottom of it. (If the insurance company will stop playing doctor…) I’m not giving up on running though, just taking it easy until I know I can run without the worry of migraines 🙂

  5. Oh. My. Lord. I am SO sorry to read your story – this SUCKS! Very smart of you to ask him what HE would do if he were you and I really hope you have something to calm you down after those calls to your insurance. God forgive me but I don’t think I’d be able to keep my cool with that kind of run around. You are one tough cookie and doing the right things – pushing to get down to the bottom of it and doing what you can to stay as healthy as you can! I pray you get answers with this latest round of tests.

  6. How frustrating! You just want to know what is going on, and the insurance company crap would be a major stress to me! I’m sorry you are going through this. Every 3 or 4 months I get the ‘aura’ of a migraine and it is triggered by bright sunshine, stress and low blood sugar. No headache but I lose my peripheral vision and I see lightning strikes. It was really interesting to read about how your blood pressure randomly spikes to very high and then back to normal….mine does that too. I hope you find answers soon.

    • Thanks Jade. The blood pressure actually worries me more than the migraines because strokes and heart disease do run in my family and sometimes my blood pressure will spike as high as 180/120 While that may not seem really high to some people it is extremely high to me because mine is usually 100/70 or lower. I’m hoping that in the quest for the migraine solution I will also be able to solve the mystery of my blood pressure.

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