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Welp i got the call. They were like “your heart doesnt have any double or irregular beats but tachycardia was present when you mentioned that you felt your heart pounding out of your chest.” Just keep up the atenolol when needed. Im like Fffff— so obviously no ones knows what pots is.
Last night i had something happen to me thats never happened before… I went to a hockey game and i was using the elevators going up to the 3rd level. The elevator moved very quickly and i didnt like it much but when i got off, my legs were shaking and i was like… “Is the floor shaking?” O.o my dad said no and all of a sudden i felt like fainting and i almost fell but i forced myself not to faint but then i was having trouble breathing for a good 10 minutes and my tachycardia was baddd. I finally calmed down took my atenolol and i was fine going back down the elevator. Is this intercranial pressure?
We all look forward to hearing your progress! For those of us with some hydrocephalus, flying can be a horrendous experience. My poor son fainted whenever the cabin pressure changed! Many of us need to get some pressure off our brains, but we also don’t want to get dehydrated! Crazy, huh? If you faint easily, I STRONGLY recommend an MRV to rule out thromboembolisms in your venous sinuses that may be blocking flow out of your head (CSF catches a ride on venous blood to exit the skull — that and some lymph drainage). Safe flying! 🙂
Weird thing is, ive never fainted in my life before. Its like my body is fighting the urge to faint and i end up getting very tachy. XD i see black spots and i lose a bit of my hearing but i have never fainted. XD during the night, my head becomes numb some nights due to laying on it i guess. XD as in the results. I havent gotten a phone call yet but i assume it takes about a week from the backlog the hospital i used the monitor from :3 i remember i stood up and sat down 3 times during the weekend just to show how much my heart rate rises from standing up.
P.s, heres my monkey
I swear… Im probably the coolest 23 year old ever 😛 lolno but i like to think i am 😛
Alright ill talk to my doctor about it when i get the results back from the holter monitor testing. Benadryl worked well for me because i could take 2 every 4-6 hrs. But i found i got dizzy since it was working so well at helping my heart slow down combined with my atenolol. Right now my dad told me to get a generic brand of claritin and its not doing much at all for me. Is there any tests i could do to determine if its mast cell related or not? I would really like to get all my medications straight before i leave for england. 😛 haha my purple monkey! He has bunny rabbit ears on him too. Hes a very odd but unique monkey 😛 i saw him and i knew i had to get him 😛
I notice some nights when i wake up, my heart isnt going fast but the back of my head feels numb. Is that normal in people with pots? I was slightly dizzy too but not enough to make me feel ill.
Other nights i wake up with my heart racing. Always by the morning my heart is going fast again. So i sit up in bed till it settles down. Ive tried raising my pillow but that made my head numb up more often. My dad gets the same trouble as me but much more rarely and his heart does not race just goes numb.Haha. Lovely. XD ive been on a plane twice since becoming ill and its my tachy that gets to me. Plus taking off and landing. I have to pop my jaw and swollow constantly. My mom usually hands me a piece of gum but since my operation on my wisdom teeth, it has become hard to chew anything for long period of time. So i usually hug the life out of my small purple monkey i bring with me 😛 but ive never fainted. But then again, i think its my tachy stopping me from fainting. Im on atenolol now and have been working with claritin, which is doing nothing for me so ill get reactine. :3 im on zantac 150mg 2 times a day. Will that make pressure worse if im on atenolol trying to keep my heart rate down? The only thing i need to do is get off atenolol and get on diamox because i think a lot of my tachy has to do with the pressure. Ive been contemplating if what i have is hyperadrenic pots or not. Ill make sure to be testing to see if thats the case. I hope i can get all this testing done before april.
Also ive had reactine before, but i dont find it ever lasts 24hrs like it says when im sneezing away with allergies. It says i can only take 1 a day. Will that be enough for mast cell issues? 😛
Haha. I wish. Im supposed to go through holter monitor and other tests before taking any action pots related. I get the holter moitor feb 8th. :3 after she gets the results she will refer me to a tilt table test and im going to mention eds or marfan at the same time if i can get some testing. The only problem is is that im going to england in april to take some photographs and see extended family. Oh yay. 7 hrs on a plane. I heard intercranial pressure gets worse on a plane. Any tips i should follow if i dont get on diamox by that time? (I dont like planes to begin with haha)
Ive tried looking for zyrtec in costco and mostly every drug store and all i can fine is benedrayl, reactine, claritin and something that started with an a… Aero… No i forgot haha. I live in canada. I dunno if canada carries zyrtec over the counter.
I do notice though when i eat certain foods that about 30 minutes later my tachy gets worse even on atenolol. So im really starting to believe that this really is mast cell/pots related. I had chinese for dinner last night in celebration of my birthday that was earlier this week and 30 minutes after i was like no way am i standing up. So i sat at the kitchen table just waiting fr my heart to finally slow down. Its sad. I love Chinese food <3
Hmm… My doctor looked at my echocardiogram and never mentioned anything but tachycardia throughout. She had me take my atenolol 45 minutes before the echocardiogram too. Which i dunno got a proper reading of my heart or not because i think the medication would mask it even if tachycardia was present. I was uncomfortable 😛 i didnt wanna be there lol. The guy told me to calm down but the woosh noises of my heart were too scary 😛 im not even sure if my chest concaves or not. :S i know i can feel that chest bone that pops out. But if my chest does concave, its not very noticable xD all i’ve known my whole life was people telling me i should gain some weight because it wasnt healthy and im like… I try! I really do. I eat! XD i promise!
I get pressure to my head if im too hot, dizzy, or carrying something heavy. Its not fun. XD um. In stores and restaurant when the air pressure changes i can get really faint feeling and lose my hearing for a minute and get a little dizzy. Ive never passed out however. I dont think ive ever had an mri done. What does an mrv do compared to a mri? Ill do this testing after the holter monitor test. The bad thing about free health care is that it takes forever to actually get the tests done. My doctor booked the holter monitor back in september and its in use till February.
Dr.dianna are you a god? XD because you are truely saving lives. This will be a huge relief to me since i was born, ive had constipation mostly my whole life. I cant wait for the big reveal. :3
I have no moons, and right before my fingers turn to the white part at the top, my fingernails are dark red. The other part of my nail is purple or white most times but can turn pink sometimes. Oh another topic. My toe nails… Both big toenails had some fungal in them and they turned yellow. I got put of some medication and then my toesnail started to regrow back pushing the old nail up till the full nails grew in. Is that normal in pots, eds? I couldnt show my nails for months.
I’ve had this exact same problem off and on for years. When i was 8, i had a dream that i wanted to get out of so i woke up but i couldnt open my eyes, breathe or move for a good 10-15 seconds. After that, its happened around 4 times since then. Im starting to think i have eds. XD last night was bad. I went out for new years eve supper and then saw the hobbit afterwards nd during the hobbit my mouth was so dry i had to keep licking my lips and i knew i had tachycardia even if i took my atenolol pill 2 hrs prior. Anyways i got a tad dizzy too and decided after the movie i was gonna go home and go straight to bed after a nice glass of water. My left foot was red and swollen too. This happens to me a lot. Not sure why.. So i was gonna lay on my back to sleep so the swelling would go down. I kept waking up right as i wuld fall asleep feeling numb, weird and really thirsty. At one point i call for my dad to feel my forehead because i felt hot but no fever. I felt like i was in a weird trance. My tachycardia was bad throughout the night too. Rest was 100-115 bpm.
Also at night, i sometimes get a low rumbling in my left ears like a truck in my distance rumbling away. It hard to explain. It only happens sometimes when im laying down.
Another quick question. Ive been trying to theorize why my body suddenly decided to make my heart rate so fast. In 2006, i got my wisdom teeth removed and before i went under i was panicing xD so my heart rate was 120 but when they put the stuff that makes you go unconcious in, my heart rate went down to 79 right before i went under. Anyways a few months after that surgery i was getting a ton of pressure and pain in my jaw-right side of my head. I had to go back to get an xray and he found something with my jaw but dismissed it as arthritis in the jaw and sent me off with pain killers and said sorry. Anyways fast forward about 6 months after that, i had a 24 hr bug that made me throw up only when i stood up. Odd isnt it? So i avoided standing up and took a gravol. After that i felt realy sick to my stomach for a good 4 months afterwards and noticed i was getting more panic attacks out of no where. So my last year of high school was a bit of a mess.
What im wondering is if my jaw has anything to do with pots, or that virus i had for 24 hrs. I also might fit in the category of eds but im not sure. I know im not very flexible… 7 years of ballet taught me that haha… So i dont know if i have it or not. I am quite underweight. I have been my whole life. I have a fast metabolism. So my bmi atm is only 17.2. Im almost 5’7″ and have long narrow fingers and long legs.
Also i find my atenolol is working better in the winter. The summer time i get severely dizzy and pressure in my head and i feel my heart pounding. Its not a great feeling. But now that its winter my heart rate eases a ton unless i end up running around and then ill get that pressure in my head feeling again and pounding in my chest. I was wondering dr.dianna, now that your tachycardia is gone, can you stay in the heat for a lot longer now? Id love to go to the beach and just lay in the sun. Im quite pale ffrom staying inside mostly all summer. Theres so much im looking forward to doing once my tachycardia is gone/pressure in my head is gone.
Oh man o.o but yeah. The beta blockers only work depending on the temperature for me. I cant get too warm or it stops working. So i usually stay in 50-75F temperatures and thats when the beta blocker is most effective. So if youre looking for a way for the beta blockers to last longer in the short term before the long term solution medication is brought up, stay in cooler temperatures. It really works. I went to my doctor last week. I mentioned diamox to her and she kinda looked at me odd and then said that she wont let me go on it till ive had the holter monitor test. Theres a back up of people using the holter monitor so im scheduled for feb. at least itll be in winter and ill be able to manage more till then. I havent had a ttt yet because i dont think my doctor knows about pots.
I have another question as a side note. I find that when i wake up in the middle or the night or in the morning that my heart races… But im laying down? Wouldnt pots mean only standing up, your heart races? I find when i sit up in my bed for awhile while drinking some cold water, my heart slows down again. Is that normal in pots? I dont think im waking from a nightmare either or have sleep apena.
Teehee sorry for late reply. Ive been feeling much better since the weather has been cooler so ive been taking advantage of my health and going out. 😛 im not on zyrtec. I do go on claritin during the summer for seasonal allergies when i feel stuffy. I did notice i felt slightly better. Ive been on zantac 150mg 1 a night now for a good 3 weeks and its helped me not wake up ill in the morning. 😀 which is great i get up just fine and have my breakfast without feeling gross. Ive had feeling of pressure in my head yup. Not in a while though. Before i started atenolol, when i would stand up i’d get horrible pressure in the front of my head so id have to pop my jaw to make it go away. I had no idea it had to relate to dySautonomia! Thats pretty cool. I love learning new things about what the body does. Diamox? I go to the doctor in two days and i will mention to her this. I will do the symptom checklist as soon as i can. Thank you so much. 😀 you are a great mentor and doctor!
