This topic contains 6 replies, has 2 voices, and was last updated by  Brittany Foster 4 months, 2 weeks ago.

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  • #17054
     Brittany Foster 
    Keymaster

    Lately, in some of the forum topics we have been having discussions about migraines. For some people, their migraines may be triggered by low oxygen levels (especially when managing a chronic lung condition).

    Sometimes I can tell when I migraine is happening because I see an “aura” or get spotted vision an a sharp pain in the back of my head. Some of my triggers that I have noticed in the past include: changes in the weather, particularly if it’s raining outside for a few days, oxygen levels, poor blood circulation, standing for too long and over exertion, going from hot to cold environments, and mental stress.

    What are some of your symptoms of migraines or warning signs? Are there certain triggers for your migraines? Share your experiences in the forums.

  • #17094
     Colleen Steele 
    Keymaster

    Migraines have been a struggle for my son. As a PH patient they were often triggered by dosage changes or adjusting to a new medication. Stress, fatigue, oxygen levels and chest pain also played a huge part. Post transplant he has experienced some similar triggers but more often now they are caused by dehydration. When he starts to feel a headache coming on he knows it’s because he hasn’t been drinking enough water.

    His warning signs are blurred vision and numbness in his body. Personally I struggle with migraines too and before the actual headache I always start to see squiggly lines in my vision. As soon as I see them I take Tylenol and if I catch it early enough I can avoid the headache. Cullen can’t seem to avoid the pain. His warning signs have always progressed rapidly. Doctors have told us that migraines can be hereditary and since both myself and my husband get them, my son probably didn’t stand a chance. Add the medication and health triggers it’s no wonder he suffers so much with them.

    • #17099
       Brittany Foster 
      Keymaster

      That is a lot of things working against him that’s for sure. Especially with the genetic component to the migraines and the medications and medical conditions on top of it. It’s no wonder why they progress as rapidly as they do when there are so many factors that impact them for him. Mine usually come on pretty suddenly too. The worst types of migraines that I have experienced are migraines from Co2 retention. Did you son ever struggle with co2 retention? (I know a few lung transplant recipients who struggled with this and the symptoms from it a lot). When this happens for me, I use my Bipap more during the day and it seems to relieve what I’m feeling in a few hours and I can usually catch the retention before it gets to a dangerous level. Like I said, headaches are one of my warning signs that helps me to catch this before it gets worse. Also, feeling ‘out of it” to the point where it almost seems like I’m not listening and when it takes me a lot longer to process things.

  • #18059
     Colleen Steele 
    Keymaster

    I thought I would revisit this topic to share some information on a medication for migraines that my son is taking. He takes a fairly high dose of topiramate which he started a few years ago. It actually really did the trick in controlling his headaches. Recently he has been experiencing a headache every morning so the dosage was increased a little more as of today.

    My son discussed with his doctor that he has been experiencing an increase in brain fog. He loses concentration easily and sometimes has a difficult time focusing on conversations. I noticed he has asked me to repeat myself frequently when I am talking to him. His doctor said this is a side effect of the topirimate and said it’s for this reason that some people call it dope-irimate. He’s going to continue taking it but if the symptoms worsen than we will have to consider a different medication, especially since he will be starting college in the fall.

    I’m sharing this side effect as an FYI in case anyone else is taking this medication or considering it. Again, works great on the headaches and the brain fog comes and goes. You can’t exactly concentrate with a migraine either so which is worse?

    • #18080
       Brittany Foster 
      Keymaster

      Hi Colleen,
      Thank you for letting us know about that medication. Unfortunately for many of the migraines I’ve had, my neurologist actually does not want to prescribe any specific migraine medication for me. Mostly because of how they can sometimes mess with the heart because of the caffeine component to them and what they do to the blood vessels. I have tried a few migraine meds in the past and they just did not go well for me. Mostly made me very jittery and anxious and I couldn’t focus on anything because of how jittery it made me. I am just prescribed narcotics as needed for serious headaches and usually just end up sleeping it off. I hope that as his body adjusts to the medication he will have less side effects. Is this something he takes every day even for a preventative or does he just take it when the migraines happen ?

  • #18081
     Colleen Steele 
    Keymaster

    Brittany,
    I’m not sure if the drug information I shared will help anyone with PH because I know my son was limited to what he could take at that time, especially with his heart concerns. Since post transplant he was given the option of taking Topirimate. He never met with a neurologist until post transplant so I don’t know if it would have been an option before then. If anything it’s a reminder that some symptoms might be related to a medication instead of the condition and so it’s always good to mention every change, big or small to the doctors.

    • #18083
       Brittany Foster 
      Keymaster

      Colleen,
      I completely understand where you’re coming from. It’s always a game with myself when I question, “is this a side effect of a medication or a symptom?” I usually keep some type of journal to log when I start a new medication and just to pay attention to my symptoms. I think journaling and writing things down about my body also helps me be more proactive in my health! For some people it might get a little obsessive, but for someone like me who used to put my troubles aside for later days (much later days), it’s good to be held accountable.

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