-
Blackouts
I’m beginning to think that blacking out is not a common symptom of PH. I haven’t seen anyone mention it so i thought i would share my issue with this. As a matter of fact blacking out was the main reason i went to the hospital and got got diagnosed with PH. So PH causes water to pool in my lung which then causes me to have a dry cough, eventually my coughs get harder and more aggressive. Then the fun begins, if i cough 3 times then it’s okay but if i hit the 4th cough, i black out and my body seizes up but it only last about 10 seconds and then i snap out of it. So its not long enough for them to classify it as a seizure and i don’t try swallowing my tongue and this happens when i have a dry mouth which my medication loves to help with or if i have to exert a large amount of energy. So i try to keep a cup of ice handy or at the least a bottle of water. I learned to sort of sense when it’s about to happen so then i would lower myself as close to the ground as possible and wait it out. But there are times that it’s just not possible to do anything but pray that it won’t hurt so bad. Like what happened yesterday. WARNING THIS NEXT PART MIGHT BE TOO MUCH FOR SOME TO HANDLE. Well i was using the toilet at my mom’s apartment and as i was sitting there. I start to cough but it’s not bad so i don’t think too much about it. Then thing i know, i open my eyes and I’m laying in a pool of blood. Apparently, i blacked out and fell forward and smashed my head at the bottom of the door and the floor. Not sure how long i was there for but it felt like a couple minutes cuz there was so much blood. It looked like a horror movie. I tried calling for my 86yr old mom but it was useless and so i pulled my left hand out of the pool of blood and worked my way up to the handle and slightly opened the door. She finally came to the bathroom and immediately help me get the bleeding to stop and to clean me up. I felt like an infant again. It took my poor mother 4 hrs. Or so to finish cleaning and disinfecting the bathroom. Cuz sadly there was other things mixed in with the blood. That happened yesterday, thursday july 16. Now this morning. I took a look in the mirror and i have a huge knot on top of my left forehead. My lips are swollen about 3x the normal and 3 of my tooth is loose. And can someone explain to me how i have a black eye when nothing could’ve hit it. And of course i still feel like crap. So does anyone else experience blackouts? Just wondering lol
-
7 Replies
-
@simplyme actually blacking out/fainting is a very common symptom of PH, especially prior to treatment – but even then it can still happen. My son was fortunate in that he rarely had black outs until his PH progressed severely but I’ve known others in which it has been a constant concern.
When he started experiencing fainting regularly it could happen just slowly walking from his bed to the bathroom.
The seizing is another symptom of PH and can be experienced in different ways for everyone. This happened to my son years before he was diagnosed. We didn’t know until his PH doctor told us that what he experienced was a PH seizure. An example was when he was in the ocean. His dad an I were holding his hands when all of a sudden he went stiff as a board, eyes wide open and fixed on the sky. We thought he was goofing around and we were upset because we had a difficult time keeping his head out of the water. It only lasted a minute or two and he had no idea what happened. No clue why were were upset.
I know another girl who experienced them much more frequently as you seem to be. What has your doctor said about it? Is he treating the seizures with anything? Are you on supplemental oxygen? If not you might want to discuss with your doctor if it could help you. Even if your oxygen rate reads fine, with PH you still might need oxygen assistance.
The dry cough was my son’s first symptom. The doctor’s kept diagnosing him with croup. They were wrong, it was PH. A lot of what you have shared sounds familiar to me.
Your poor mother must have been so frightened. Please keep us updated.
-
Wow, @simplyme, this must have been frightening for your elderly mother and yourself. @colleensteele is correct; fainting is a common symptom of PH. Maybe we just have not discussed this lately, as you have noticed.
This has to be difficult as you never know when this may happen. I hope that your PH team is aware and has some plan to tackle this and hopefully decrease these events for you.
Another common issue is with those with heart issues, having a bowel movement can be scary. This requires some tp push, and often heart patients pass out while on the toilet. Making sure that we are not constipated, and eating a high fiber diet can help if constipation is an issue.
@colleensteele offers some excellent advice, and I would conquer with those tips, also. I am currently working on some issues with seizure activity. @colleensteele, was Cullen started on any anti-seizure medications, or did his PH meds help? I know these “episodes” can be scary and something that I certainly need answers about.
-
I “blackout” for a second or so when I cough hard. It isn’t enough to make me fall if I am standing although it is enough to cause me to grab some support. Everything goes dark and I hear a buzzing but it is very momentary.
When I reported this to my pulmonologist, they just said “that’s not unusual” but didn’t offer any treatment or suggestions.
-
Mendo Bruce, the first question my specialty pharmacy and pulmonologist ask me every time we talk is if I have “fainted” since we last spoke. It concerns me that your Dr. was not more interested in helping you. I used to pass out simply walking from my bed to the bathroom. I passed out one Sunday in my mom’s kitchen. She was 88 at the time. I have to tell you she was extremely upset. It hurt me to think that I worried her so. I called my pulmonologist the next day. He insisted on seeing me within days. That’s when he put me on (sc) remodulin. I haven’t passed out since. So, while I can’t tell you what to do. I will say, that if it were me, I would be more assertive with my Dr. and insist he help me figure out why I “blackout” and what to do about it.
-
@jennifer-beaty you make an important point. “Have you fainted recently,” was always a top question from his PH specialist. Once he even collapsed during a 6 minute walk. @mendo-bruce if it were me, I would also press your doctor to focus on the blackouts and a plan to try and stabilize the symptom. Keep us updated. We are here to support you.
-
I have med professionals ask if I’ve fainted, routinely, but I’ve been blessed enough to get to a place to lay down when I know I could be going down. Coughing is not a precursor for me, as much as plain ole hypoxia. I need to extend tubing since my nightime o2 has now become a daytime o2 as well, and little jaunts to the bath or upstairs kitchen we’ve set up, are becoming more & more perilous.
-
@dinky1952 tubing can really become a hazard to a certain extent. We had extended tubing for my son that could reach upstairs and downstairs. Depending on where he was a the moment we had to watch our footing, especially when going up and down the stairs.
Log in to reply.