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Tips for Dealing With Migraines When You Have IPF
Hi Everyone,
I am lucky enough to have never been someone who has suffered from headaches growing up, or throughout my adult life. Today marks day 14 of a terrible headache that has varied in intensity, although has not gone away fully in two weeks. The intensity can vary from a 1/2 or an 8/9 out of 10, and for someone who has a really high pain tolerance, the 8/9 was concerning to my doctor. When they were that painful, I was also experiencing nausea, dizziness, sensitivity to light and even vomiting occasionally. These are all classic symptoms of a migraine I am told, although I wouldn’t know as I have never suffered from migraines.
That being said, I went to my regular doctor (not lung specialist) who conducted a neuro test on me, and I unfortunately failed some of her testing. As a result, I have been sent for an urgent head CT and MRI as there is some suspicion that I have a concussion from a car wreck I was in not that long ago. Needless to say I am worried, but as I reflected back, I realized that overall I believe I have had more headaches since being diagnosed with IPF than I ever had before my diagnosis. This make sense in my mind since being chronically under-oxygenated, even when using supplemental 02 would cause this.
My question for all of you is: have you noticed an increase in headaches, or migraines in particular since your diagnosis of IPF/PF? I’d love to hear from you if so! I’d also love to hear of any more natural remedies that alleviate your headaches, as I prefer not to take more medications if I don’t need to.
Thank you in advance for sharing!
Warmly,
Charlene -
2 Replies
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Hello Charlene,
I love your columns. I am old enough to be your mother, but I very much relate to many your thoughts and ideas. Regarding headaches since being diagnosed with pulmonary fibrosis, I have definitely noticed an increase in headaches. I also have not had a history of headaches and prefer non medicine strategies. I was diagnosed with IPF five years ago, and have used supplemental oxygen in increasing flows since then. I take various medications, including Esbriet and Cellcept, so I often blame headaches or nausea on side effects of these medications. Recently, however, I have began having actual migraine headaches in the morning, with all the symptoms you mention. I tried various (non medicine) remedies such as wearing sunglasses, closing my eyes, limiting noise and a cold pack on the back of my neck. The strategies may have helped limit the duration, but did not prevent the headache from occurring in the first place. The strategy that has worked for a couple of weeks now is when I get up, I increase the oxygen flow from my concentrator (which I had turned down for sleeping) and I also begin immediately drinking water. My two theories for why I was getting morning migraine were that 1. I needed more oxygen to avoid the headache, and 2. I was dehydrated, and needed liquids. With your history of a possible concussion, that could certainly be a factor in your headaches. I am hopeful you will find relief very soon.
I hope this is helpful to you and others.
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Hi there,
I would love to be able to acknowledge and thank you for your wonderful post using your real name. Please feel free to message me directly if you’d like to keep it private, although please know this forum page is a wonderful place for people coming together in support of one another living with pulmonary fibrosis.
I really appreciate the time you took to reply to my post about increased headaches. I wish this wasn’t the case for you as well, but it does give me some comfort in knowing that others experience this as well. The symptoms that I mentioned, which you said you can relate to, can be so debilitating can’t they? I never knew how bad they could be and certainly empathize more with others now who experience migraines on a regular basis. They can be terrible! Did you find a cold pack helped more than heat? I get chilled easily so I don’t think I would like this, although am willing to do it if you found it helpful. Your tips about increasing the 02 flow and drinking water in the morning are also greatly appreciated. I’ll give this a try, as oftentimes my headache symptoms are the worst in the morning when I first stand up from laying down to being vertical/up right.
Thank you again and please feel free to write us any time!
Warm regards,
Charlene.
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