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    • #12507
      Brittany Foster
      Keymaster

      Recently, I had a visit with my neurologist. In the visit we reviewed neurocognitive testing that I had back in February. I was referred for this type of testing because I was complaining of noticeable memory difficulties that were beginning to impact my every day life. The results weren’t surprising but it was still difficult information to take in.

      Having chronic low oxygen levels, central sleep apnea , lack of proper circulation, and impairment in gas exchange, are all factors that have contributed to the neurological consequences that have been more prominent in my life recently. As many know, pulmonary hypertension impacts more than just the heart and lungs. I frequently suffer from debilitating migraines, feel as though I am in a fog during the day, and notice that I have been having trouble learning and processing new information.

      Some of my neurological and neurocognitive symptoms throughout the day are, sensitivity to light with migraines, spotted vision, pulsing headache pain in the back of the head, brain fog, memory lapses, difficulty with concentration, and troubles with learning and remembering new information. My reaction  time and processing speed is also a lot slower than it once was.

      Have you noticed any neurological effects from pulmonary hypertension? Do you experience brain fog, lack of memory and focus, or severe migraines? How do you manage this in your life and make others aware of your condition?

    • #12528
      Ann Goddeyne
      Participant

      I too get migraines. I’ve had them sporadically for ages but since my PH diagnosis and subsequent problems with my oxygen dropping with movement I’ve been getting more migraines. They seem to come in clusters and are stronger. I’ll see my neurologist in a few months.

      • #12533
        Brittany Foster
        Keymaster

        Hi Ann,
        definitely this is something to bring up to a doctor especially if they are getting worse. My neuro says mine are “hypoxia migraines” which I am getting because not enough oxygen or blood flow is getting to my brain and the fluctuations in my levels throughout the day really seem to mess with me. This is a huge sign for me to rest and crank up the oxygen. Even if it’s just for an hour it helps to alleviate some of the pressure I am feeling in my head. On these days I feel it a lot when I lay down it feels like really bad head rush and a pulsing feeling especially when laying down until it calms down a bit. Do you ever get that head rush or pulsing feeling ?

    • #13649
      C. Todaro
      Participant

      This is incredibly interesting b/c I’ve had migraines for 10+yrs. The triggers have never been clearly identified because migraines themselves vary. What began as “classic w/ aura” morphed into vestibular and/ or hemiplegic over the years. I never considered hypoxia could be a trigger. I often wake with migraine. Throbbing is a definite sensation when pain is intense. Triptan injections could usually knock out the pain, but my cardiologist says triptans are too dangerous now.
      Good luck to all PH + migraneur suferers… er… “phighters” 🙂

      • #13658

        Oh, I’m so glad I’m not the only one! I don’t have migraines, but I do get headaches, and very tired sometimes. I’m only prescribed oxygen at night with my cpap, but on bad days I lie down for a while with the cpap and oxygen on. Even a half hour can make a big difference to the rest of the day.

        • #13662
          Brittany Foster
          Keymaster

          Debra,
          I agree! I also use my bipap and oxygen even more during the day especially when my headaches are bad. It definitely works to help relieve some of the symptoms ! I’m glad you found that it helps you too!

      • #13661
        Brittany Foster
        Keymaster

        It certainly is worth mentioning. I know personally, my neurologist relates my migraines to my vascular conditions and hypoxia which is difficult because it makes it hard for them to treat it. Especially because many of the “triptan” tyoe medications act on the blood vessels or increase my heart rate. mine have been getting better when I increase my oxygen flow and since being on bipap. Do you have sleep apnea? just wondering since you mentioned waking with migraines.

      • #13892
        Gayle Meagher
        Participant

        Yes I can’t lay even close to flat; I get the feeling that all my body is going to drain out of my head. I get so stopped up I can’t breath. So I sleep in a recliner most nights. We also bought an adjustable bed which helps some; except that it puts me on my tail bone. I can’t hardly study or read anything longer than a few ppgs without losing focus and can’t remember much either. I make notes in my phone and on paper. I have central sleep apnea, low sats from time to time. The struggle is so real.

        • #13895
          Brittany Foster
          Keymaster

          Gayle,
          I know exactly what you mean about laying down flat and feeling like your body is draining out of your head. This actually has been happening to me recently. Not sure if it is from recovery from the surgery I just had ( I just had my final ovary removed and am now in surgical menopause but taking hormone replacement). I have had that feeling before though, almost like a pulsing in my head and a pressure in my head when I try to lay down flat. I also can understand the frustration of trying to remember things like reading. I still read as much as I can but it is frustrating to me when I know I’ve read a book only a month ago but if someone were to ask me about it I wouldn’t even be able to tell them the main characters. As you said, “the struggle is real!”

    • #13667
      C. Todaro
      Participant

      Docs think apnea is possibility. I’m scheduled for sleep study in a couple weeks. I usually sleep only couple hrs at a time, occasionally wake choking, HR and BP run low at night. I am scheduling with pulmonologist myself because cardiologist is moving too slow. I can’t breath, I cough a lot, it’s difficult to talk, chest hurts, etc.
      So 02 helps with headaches/ migraines? I’m going to look into that. Thanks. So nice to know others are going through this mess as well.

      • #13671
        Brittany Foster
        Keymaster

        Personally,
        when my migraines and headaches are bad my o2 is lower so turning up my oxygen seems to help a lot. Even if I have it at a higher flow rate for 45 minutes to an hour it relieves some of the pressure. I’m interested to hear how the sleep study goes and what results they can get from it. That was one of my symptoms before diagnosis of central and obstructive sleep apnea. I would feel like I was choking and wake myself up. Usually would wake up feeling pretty light headed too. Keep us posted on what they find !

        • #14281
          Janet Barry
          Participant

          Hi. When you say trouble talking,could you be more specific please? I have trouble with my voice “fading”. My ENT said it was from reflux, but I don’t.
          Thank you

        • #14283
          Brittany Foster
          Keymaster

          Hi Janet,
          Thank you for sharing your response with us. For me, I have trouble with losing my voice easily and it getting raspier than it usually is. I also have trouble with talking sometimes because it makes me feel light headed and out of breath. It will get raspy when I have been talking for a bit especially if I don’t have my oxygen in. My throat feels right and constricted when this happens to my voice too. My PH doctor suggested seeing an ENT because I have esophageal narrowing because of an abnormality with my aorta so that might contribute to mine.

    • #13849
      VK
      Participant

      I think I have a lot of brain-related symptoms and syndromes due to a lack of oxygen.

      Anything and everything that’s a symptom of AD/HD I have probably is due to cerebral hypoxia.

      I also have migraines but infrequently (1-2 times a year at most).

      • #13852
        Ally
        Member

        Thank you for sharing your experience, VK. I’m sure that’s made life very different for you. Have you found any coping strategies or medications that help?

      • #13896
        Brittany Foster
        Keymaster

        VK,
        When I had neurocognitive testing done it found that I have a high level of difficulty with recall and processing speed. They said they aren’t surprised because my areas of deficits match up to someone with severe apnea and someone who has had hypoxia. The testing was very informative and I work with a neurologist to come up with ways to help this too. It gets scary when driving and feeling like I don’t remember how I even got somewhere. I limit long road trips by myself and try to avoid the highways as much as possible.

    • #13956
      Iris Alexander
      Participant

      Wow I experience all of this and had just attributed it to me getting older. I’ve had migraines all of my life before PH but the past 2-3 years my memory and concentration has been horrible. I use to love to read now I struggle to stay focused and retain what I read

      • #13959
        Brittany Foster
        Keymaster

        Iris,
        that is when I first started noticing it in myself was with my reading and losing focus while reading (which is always something I’ve enjoyed doing). I still force myself to read because it’s something that I like doing, but it is frustrating when I can’t remember anything about the book I read last week. Other people noticed it with me first. My boyfriend would always say something like “yea, I just told you that yesterday” or would catch me and say “you told me that story yesterday”. Even the kids I nanny will comment when I have been repeating things to them or am thinking I am telling them something for the first time. It’s scary to me to see these signs in myself though. That’s the hardest part.

    • #13997
      Iris Alexander
      Participant

      Brittany does your doc think these changes are permanent?

      • #14013
        Brittany Foster
        Keymaster

        Unfortunately yes, especially with the hypoxia and the sleep apnea over these years. They said I am high risk for developing dementia at an earlier age. Right now I am still able to drive but they will be evaluating me if they think things are getting worse. My memory certainly is worse than it was last year. Even with conversations and listening to people I just hear not even half of what they say and completely forget when someone has already said something to me.

    • #14001
      Robin Webster
      Participant

      Until I read your post, I wasn’t connecting the dots from my PH to some of those symptoms. Honestly, I’ve been blaming my “brain fog” on the chemotherapy I had four years ago (since I was diagnosed with breast cancer almost a year after being diagnosed with PH.) I had read an article saying the chemo brain fog could last up to five years, so I immediately informed my boss and sort of “apologized in advance” for not being as sharp as before. Yikes, now I have to wonder if it’s ever going to change, because I supposed there’s a whole lot more PH involvement in it than I realized. LOL! Ah, well, it is what it is. I’ve been compensating at work and the rest of my life my making lots of notes and giving myself lots of visual reminders. … I’ve had major light sensitivity, too, and I’ve been blaming that on glaucoma/cataracts, because I couldn’t imagine what else might be behind it.

      • #14015
        Brittany Foster
        Keymaster

        Hi Robin,
        after all the testing that I had done for neurocognitive functioning, all they could offer me was advice and tips on how to manage this since it is now a part of my life. They told me things like making sure I have information in a calendar that I always have, giving myself reminders either in the form of a visual reminder or on my phone (which mine has been on my phone), telling someone else when something is important that is up and coming so they can remind you, and making people aware of what you are experiencing so they don’t take it as rudeness or take it the wrong way. I like to be open with others about it so they don’t think I’m ignoring them and that I don’t think what they’re saying isn’t important. The people that truly care about you and want to help you will understand this.

    • #14196
      C. Todaro
      Participant

      A home sleep study showed I have sleep apnea. I haven’t followed up yet to get details due to an insurance issue.

      • #14205
        Brittany Foster
        Keymaster

        My home sleep study was the first to diagnose me with central sleep apnea, then I had to get an overnight sleep study to get the BIPAP machine covered my insurance. Getting the machine was a bit of a process especially becasue of the insurance needing their own proof of a condition. I hope you can get the insurance issue on your end straightened out. The bipap or cpap (depending on what kind of apnea you have) really will work wonders ! Keep us updated !

    • #14230

      For several years now, I have been dealing with brain fog and memory loss. At first, I thought it was related to medications, as I take medication for PH and also for OCD and hypothyroidism. The pscyh I was seeing when I first noticed it thought it was due to a mental condition, so she prescribed another medication to try to help me to focus, which didn’t work. I mentioned brain fog to both my ACHD doctor and my PH specialist, but neither mentioned that PH could cause memory loss and fogginess. For quite some time, I have been thinking that I’m making up problems that don’t exist, but the truth is that they do. Some days at work I am so unfocused that I lose my train of thought over and over again. It isn’t just placing keys somewhere and not knowing where they are, or walking from one room to the next and forgetting why. It is forgetting to the point of believing that I have early stage dementia or alzheimers. I fear losing the ability to do my job altogether, as well as struggling when to gauge that I’m more of a detriment than asset at work (I’m a financial administrator). Are there tests that can show brain deterioration? Is there any way to know how quickly this will progress? Honestly, I fear losing my mental cognition more than PH itself.

      • #14232
        Brittany Foster
        Keymaster

        Hi Lisa,
        I understand your fears completely. It’s scary to me how much my cognitive abilities have changed over the last 5 years. I repeat myself almost constantly as if I’m saying something for the first time. I act like I’m hearing something for the first time when I’ve been told it before. Even medications I’ll forget if I took or not even though sometimes I just took them a few minutes prior. It’s one thing if people notice this and point it out to me but its even scarier and harder to admit it to myself. For my testing, I originally started out by addressing things with my neurologist who gave me a preliminary test before sending me to get neurocognitive testing done by a neuropsychiatrist. The testing tested things like short term memory, processing speed, recall memory, etc. And gave me a report a few weeks later that was explained to me and gave me reasons as to why my brain was doing that (because of low oxygen levels, and apnea) it was very informative. If you have a neurologist I would request testing and be honest about your concerns.

    • #14286
      Janet Barry
      Participant

      Thank you, Brittany. I especially have a problem when I’m reading or leading prayers at church. When out with friends my voice gives out when conversing. It’s very frustrating.
      Janet

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