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Do you experience migraine headaches?
Those with migraines know that the pain from a migraine goes far beyond the pain of a headache. It’s the type of pain that keeps me in bed with extreme light sensitivity. It’s the pain that makes listening to the radio feel like nails on a chalkboard.
Migraines are hard to treat and they are even harder for those with pulmonary hypertension to prevent. For me, I get worsening migraines when I am experiencing changes in hormones, when my oxygen levels are low, and when my blood pressure is either too low or too high.
It has been difficult for me to treat these migraines. I often rely on a high strength ibuprofen which just dulls the pain for me. I use a higher flow oxygen setting while resting which helps to relieve some of the tension. There are many types of migraine medications out there, but I have sensitivities including anxiousness and increased heart rate to almost all of them.
Do you suffer from migraines? What triggers your migraines? How do you treat them? Do you have any tips or tricks that may help ease the discomfort?
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8 Replies
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I have had migraines with aura since I was 10. I originally used ibuprofen up to 800 mg to try to stop them. They kept getting worse now I take sumatriptan at the first hint of an aura. My triggers are also low oxygen missing a meal, Lack of sleep, changes in weather, and who knows what. I can’t take ibuprofen anymore only Tylenol which does nothing.
I am so sorry that other drugs don’t work for you. For awhile I was on daily propranolol to reduce headaches. I stopped because my blood pressure was really low after starting Letairis My neurologist now has me taking magnesium (my levels were low normal) as a preventive for migraines. Good luck. I know how debilitating this can be
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Hi Ann,
thanks for much for the advice. I’m really sorry you deal with migraines too. It is so scary to have the ones with the aura. When I first experienced this in middle school I had no idea what was happening and ended up passing out ! It was an awful experience especially that it happened in school. I use metoprolol for my arrythmias and my doctors said that it does help to reduce the frequency of headaches too which it seems to have reduced mine a bit ! I use to get them at least once a week and as you probably know they leave you out of commission for a few days ! The magnesium is a great idea to try. Sometimes I have had IV magnesium to try to get rid of the migraine intensity. Thanks again for your input !
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I’ve been suffering from a migraine for months now, and been dosing myself with a lot of pain relievers. I’m starting to think that I might take away the pain of my back with the meds but at the same time punishing my liver slowly. So, I started reading articles about marijuana and its medical aspect and found this along the way blimburnseeds.com/chocolopez. Hope it heals me. Can someone give me a good advice? Thank you!
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Hi Paul,
I don’t have experience with medical marijuana because when I have tried it it gives me a lot of anxiety because of the feeling of being out of control. I have heard good things about cbd oil though or cbd edibles. They don’t give you the “high” feeling.
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I have suffered with migraines since my teens. They got worse in my 30’s due to arthritis degeneration in my cervical spine. Because of my other diseases and medications, I do not take anything for them. I sleep (and cry) them off.
Recently, I lost over 50 lbs of fluid weight when I was hospitalized with pneumonia, and I keep losing more. It didn’t dawn on me, but my Pulmonologist says we will have to adjust my Remodulin dose because it is calculated by weight.
My point is in addition to oxygen and hormonal changes, note any changes in medications and in your body in general. With PH, we are so much more sensitive to changes in our bodies.
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I agree Dori. Hormone changes are really hard for me. I will be getting an upcoming surgery that will put me into surgical menopause at just 28 and I am nervous about how my body and lungs as well as how my blood vessels will handle this. I will make sure to pay close attention to the changes. Thanks for the advice ! I’m sorry you have to suffer through migraines too. It’s an awful feeling.
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Thanks for this helpful discussion. I have been experiencing more headaches recently, especially waking up from after not sleeping well, but did not consider them migraines or related to either PH or oxygen levels. I’m in the process of filling out a long patient questionnaire for a initial PH Center appointment Monday: this thread reminded me to check off “headaches” on the list.
I write on 750Words daily (or try to) and have for years. Now it’s part of my PH self monitoring routine. It helps me notice and keep track of patterns and changes in them as well as in baseline readings.
Dori’s observation rings so true.
My point is in addition to oxygen and hormonal changes, note any changes in medications and in your body in general. With PH, we are so much more sensitive to changes in our bodies.
So many days I feel like a walking barometer, but knowing that and noting weather conditions before starting my day (as well as during it) helps me pace myself.
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Vanessa,
I’m glad that you make note of changes and are taking charge of your health my documenting when your body feels off. It will be especially important to tell your doctors if you are waking up with headaches. This may prompt them to look further into how you’re sleeping. I know for me, they did a sleep study and found out that I have sleep apnea. With using a bipap machine with oxygen, my headaches with waking up have been less.
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