A Week Long Lyme Headache

Posted on December 23, 2016 by

28 Comments

I woke up this morning, early, and I was really excited because I didn’t have a headache! Yippee, thought I. And then I realized that I’ve had a headache for over a week now. Maybe 10 days? It subsides off and on, but I think it is the same damn headache. Maybe not, but that really doesn’t matter all that much. The pain matters more.

It may be the insane weather we are having. Last week at this time, it was 80 degrees. Then by Sunday, it was 27 degrees out. And today? A rainy and moist 75. Seriously. So, yeah, there’s that. It may be that the semester just ended and even after 16 years of teaching, it’s still pretty stressful. More stressful when chronically ill. So, there’s that too.

There have been a few days these past few weeks where I just keep taking medicine and hoping one of the many selections will just give me some relief, and periodically something has. Usually it is maybe an hour or so at a time. Then, the monster returns. It isn’t a migraine. It’s just a constant pain inside my skull.

Before Lyme disease, I rarely had headaches. The only headaches I experienced were either alcohol induced or hormonal. Indeed, I was a lucky duck. My mom has had issues with headaches her whole entire life including migraines. And my husband also has migraines periodically that lay him out for most of the day/night.

Then, in the fall of 2012, I began to have daily headaches. Not crippling, mind you, but just enough pain to not be able to ignore. Every day at work, by noon, I could feel it coming on (or maybe it never really went away). Sometimes, nausea would accompany the headache. The Daily Headache continued for months on end. Of course, there were a multitude of other symptoms going on but the headaches were something quite new and stood out more than say the fatigue or the periodic joint pain.

When I saw the Worst Infectious Disease Doctor Evah (although statistically, ID doctors are NOT LYME LITERATE) in January 2013 with a solid 25 symptoms including the onset of the new Daily Headache, he told me to drink more water (since I was hospitalized with a horrible kidney infection in 2006 I drink almost a gallon of water daily). The ID doctor dismissed every single symptom I explained to him but the bitterness of that particular doctor visit is for another time. Needless to say, almost all of my symptoms were classic LYME DISEASE symptoms and luckliy, I was diagnosed (and CDC positive) less than 6 weeks after this visit with the dismissive ID doctor. Anyhoo!

As I moved into oral antibiotic treatment, the headaches continued except at some point, I can’t pinpoint when, I began to have migraines. WTH! Migraines really suck! I now can empathize way more with my mom and my husband and others! Hours and hours of pain, nausea, ugh. For a while, and I can’t be more specific because of my short-term memory issues (LYME symptom as well), I had daily headaches and then migraines in between. Good times. I am so sorry if you suffer from headaches and/or migraines, my peoples!

When my LLMD took me off of antibiotics full-time last November 2015, I still had the headaches. And the migraines. But, slowly and surely, these daily headaches and the migraines began to let up a bit. So, for the past few months, probably since say June (again, short-term memory loss!), there’s been a reprieve from the daily headache. Since June, I’ve had maybe 3 full-blown migraines. This has been progress! I think that this progress has been the result of many things coming together at once, such as Lyme treatment (after so many years going untreated) and dietary changes.

migraine

But, since Thanksgiving, my diet has been seriously not so good. I had cut out all sugar, carbs, cut down on wheat and corn products. Oh, Thanksgiving. I mean, I haven’t gone totally CRAZY with eating sugar, etc. but I have been drinking more soda and well, I sure haven’t been grain-free. I plan on getting right back on my diet after Christmas. I can see now that it has helped me to control some symptoms and while it was a bit of an adjustment to new eating habits, it certainly is worth it.

Like I said, this headache started about a weekish ago. On my last day at work, before Winter Break, I sat in my classroom, in the dark, just trying to work through the pain (no worries, I didn’t have students LOL).  Saturday was much of the same. At least this week the headache hasn’t been a full-blown migraine but still. I’ll tell you though, I most definitely appreciate the time I have without headaches now. Pre-Lyme, I never noticed how wonderful it is NOT to have a headache. Chronic Lyme disease continues to teach me lessons. Hey, just trying to stay positive! 🙂

And, here comes my little friend. Back again today. Time to rest a bit. 

Toodles friends – B

 

Category: chronic illness, Lyme disease Symptoms, The PresentTags: , , , , , ,

28 Comments on “A Week Long Lyme Headache”

  3. The headaches are always behind my right eye, coupled with the dyshidrotic eczema, the sever fatigue, the short term memory loss ( which is really hard to cope with) and my legs turning to jelly and barley holding me up ( and a one year old and two year old) I often feel like my life is falling apart and will never be whole again. January 9th I will travel to Minnesota to see a Lyme literate doctor. I am prayerful I don’t have my hopes to high, but something has to give. I was diagnosed 2 months ago, I’ve been sick for over 2 years, and my neurologist who is two hours away seems to be dragging his feet, shows no concern over the state of my health and its impact on my family, and has me going back and forth for testing on repeated visits but won’t offer me any kind of idea on treatment as of yet. Does it get better? do we ever heal from this? is our entire life now going to be dominated by illness? our hopes and dreams for a big family gone forever? will I ever be able to walk to the park with my kids, or ride a bicycle for more than a block without needing a nap afterword’s……ok I’m done whining, I try not to vent to family and friends, so you strangers just got the brunt of it.

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    • I wish you well for your LLMD visit! I’ve been sick since fall 2009 in hindsight of course. I had cyclical bad health and kept getting diagnosed by my GP with mono. By the 5th time with “mono” in fall 2012, I began earnestly seeking out a root cause for my immune dysfunction. After about 7 different doctors and several diagnoses, I was correctly diagnosed and I’ve been treating for almost 4 years now. I see two LLMDs here in Texas. I have made some progress but not as much as I would have hoped for. I’m treating with herbals now as I did 3 years of antibiotics including a PICC line. I’m still working full-time so that may be hindering my recovery a bit . Oh I saw a neuro as well and had an MRI as I was having numbness in my calves. He did not help at all. He ruled out MS and sent me on my way feeling horrible and with numbness in my legs still. I can totally relate to your fears and frustration. There is not enough being done for Lyme patients at all.

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  5. As I have chronic migraines, I can relate. I’m sorry you’ve been dealing with them, because I know just how much they suck. Wishing you a (fingers crossed) pain free holiday, and a better new year!

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  6. I have regular headaches as well and can sympathize with you — through I doubt they are as severe. I do hope you find a way to deal with them that allows you to stay on schedule! Merry Christmas (if possible!)

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  8. I understand the frustration of getting a doctor to take your symptoms seriously. Although I do not suffer from migraine’s too often, knock on wood. I do have a rather long list of invisible, chronic illnesses, and have had for most of my adult life. Diagnosis after diagnosis, finally………………….but, there’s still something very mysterious going on inside this body that seems to stump every doctor I’ve come in contact with. Luckily, when I was recently hospitalized for fainting, I was seen by a neurologist. He sat down next to the bed and within 5 minutes max, he said he could tell just by looking at me that there is something so not right. Something about my eyes. He ran a bunch of lab work, ordered several tests. He told me he wanted to see me 2 weeks after getting out of the hospital. He said he will not give up on me. He said he WILL figure me out. He will test and test and test…………………I went to see him and spent about 2 hours talking to him about all my symptoms, surgeries, etc. He said he was going to go home and start his homework. I’m patiently waiting…………….Validation feels really great. Yes, many other things have been diagnosed slowly, over the years, but there’s always been that “autoimmune disease’ every doctor tells me I have, but no one wants to look beyond their specialty, which is not helpful for those of us with so many body systems involved. I found my Dr. House. I was in the right place, at the right time, with the right doctor, FINALLY! He promised……I hope he doesn’t let me down. I’m happy for you that you’ve been validated and I hope you’re undergoing the proper treatment for that disease and are on the way to feeling much better. Take care. 🙂

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  9. Thanks for reading and visiting my blog. I will definitely read and browse your blog and I wish you and your, friends Merry Christmas and a happy new year 2017 🎄 🎆 👍.

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  11. Sorry to hear about your illness. From some reading, because I had to some years ago, I found that many chronic illnesses leave us vulnerable to:-

    Lack of Vitamins and minerals, especially minerals.

    A range of allergies An individual may be normally unaffected because their immune system steps in as a last resort but chronic illness overtaxes it. Amongst the headache causing allergies them are:-.
    Soy Sauce
    Chocolate
    Grains
    Milk products
    Any others that are not dealt with by our own range of digestive enzymes and stomach lining and rely upon our immune system. One way of discovering is the 10 day veg only diet excluding strong flavoours. Then gradually reintroduce foods and watch for effect.

    Stess and fatigue. Both of which have an effect on our immune system.

    Best of Luck and a Happy New Year.
    .

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  12. I’m sorry about the headaches, but I’m so grateful to find someone who understands. I thought the same thing about my headaches. Was it hormonal, weather change, not wearing my reading glasses, staring at a computer screen? I too have NEVER had headaches or migraines, unless like you it was alcohol induced or through a flu virus. I just got diagnosed with Lyme and for the past week my headaches have been so bad that I close the blinds and wear my sunglasses in the office. I hope that you are doing much better. Good luck to you and your journey.

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    • OMG the headaches! Daily. Then migraines. I never had migraines. But my friend, it will get better. It will. Last summer, I was having migraines once a week. But I’ve only had like 3 these past few months. In the midst of it, I thought the headaches and migraines might never stoo, but they are slowly but surely. I wish you the best. I’m here if needed. Fighting the good fight! XXOO

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  13. Awesome! My LLMD finally have me migraine meds last summer and they helped. I never knew headaches much before Lyme disease. But you are on your journey to healing now and that is great! 🙂

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