HEADACHES with MAC ANTIBIOTICS

Yes, when I was on the big 3 I got lots of headaches. I suffer from migraines but like you did not get too many. There were times when I had migraine headaches for 2 or 3 days in a row. Nothing helped. I was not on Arikayce. A lot of the antibiotics list headaches as a side effect. They can be very exhausting. I was always hydrated but think it might have been due to stress too as this treatment is hard going. I started to use a heated wheatie pillow which you can put in the microwave it gave some relief. Hope you find some relief soon.

Thank you. Did the headaches go away for the most part after you stopped taking the big 3? And, how long were you on the antibiotics? Thanks again.

I was on the big 3 for 14 months. The headaches subsided about a month after finishing. I still get migraines every so often. When I found out that the NTM had returned I had a migraine for 3 days.

The heated pillow is a great idea. I also use a chilled mask, the one I have, ordered online is more like a cap so goes around your head with a notch for your nose. I’m still on the big 3 so can’t comment on symptom relief upon discontinuing as of yet. I am hopeful I can stop the Cresemba soon which will be helpful.

I can’t comment on headaches related to the big three but I can comment on headaches in general. For a while, I was having a lot of headaches likely due to sinus issues so my PCP referred me to a pain clinic, basically a work up by a neurologist. If you’re getting 15 headaches a month, I would say a referral to a neurologist or pain clinic is a good idea. They might be able to help you.

Are you avoiding tyramines in diet? I am on Linezolid also and read that Linezolid interferes in breaking down tyramines in the body. Headaches is a side effect of that. Tyramines are in a lot of foods. The biggest concern is: aged cheeses, sausages, bacons, anything fermented, pickled etc. Also in citrus fruits and a lot of other foods. I still have not found a decent food chart for this.
I am having diarrhea and fatigue and fairly certain it's the Linezolid. I have an appointment with my ID doctor this week and I will be asking her if there's anything else I can take.

AI made this list of foods that do not contain tyramine. Use caution as sometimes AI gets it wrong.

Tyramine-Free Food Chart

Avoid tyramine-rich foods by focusing on fresh, non-aged, and unfermented items. Here's a guide:

Vegetables

Allowed: Fresh broccoli, carrots, cucumbers, zucchini, bell peppers, spinach (fresh only), lettuce, celery, green beans

Avoid: Fermented vegetables (e.g., sauerkraut, kimchi), overripe or spoiled produce

Fruits

Allowed: Apples, grapes, watermelon, berries, pears, oranges, fresh pineapple

Avoid: Overripe bananas, avocados (especially very ripe), figs, raisins, dried fruits with sulfites

Grains & Starches

Allowed: Plain rice, oats, pasta, fresh bread (same day), quinoa, barley, corn tortillas

Avoid: Sourdough bread, fermented grain products

Proteins

Allowed: Freshly cooked chicken, turkey, beef, eggs, fresh seafood (used or frozen immediately), fresh tofu (not fermented)

Avoid: Aged cheeses, processed meats (salami, pepperoni, hot dogs), smoked/pickled/fermented meats and fish, miso, tempeh

Dairy

Allowed: Cottage cheese (fresh), cream cheese, milk, small amounts of plain yogurt

Avoid: Aged cheeses (cheddar, Swiss, blue, brie, gouda), sour cream, buttermilk

Condiments & Flavorings

Allowed: Fresh herbs, olive oil, lemon juice, homemade vinaigrettes (without aged vinegar), salt, pepper, fresh garlic

Avoid: Soy sauce, tamari, miso, fish sauce, pickled items, balsamic/wine/malt/cider vinegar

Snacks & Treats

Allowed: Plain crackers, rice cakes, fresh baked goods, honey, fruit-based desserts

Avoid: Chocolate, aged nuts, trail mixes with dried fruits, caffeine-containing snacks

Beverages

Allowed: Water, herbal teas (non-fermented), milk, fresh juices

Avoid: Red wine, beer, vermouth, kombucha, caffeinated drinks

Note: Always consume food as fresh as possible. Tyramine levels increase in foods over time, especially if improperly stored.

Thanks scoop! That's pretty close to what I've been finding. I've seen quite a few food charts for Tyramine and have found many contradictions. Most charts say avoid or limit citrus and pineapple. Avocados too! A lot has to do with individual sensitivity, and for some-even low levels of tyramine can be a problem. For me, it's trial and error.
I started the low tyramine diet when I started the meds and am slowly adding foods that have low or moderate levels of tyramine to see if I'm sensitive to those foods. It's not a fun diet.