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Hi im new here. I have had a fairly fast heart rate even at rest since i was 18. Im 22 now. It is always above 100 and it ranges from 100-110 on rest. I find when i simply stand up my heart begins to really race. I checked my moms blood pressure machine while standing up and it showed 110/70 at 146 bpm and an irregular heart beat and i thought the irregular heart beat might have been a fluke so i redid it and it was85/58 138 bpm. Its always in the morning when i wake up that its the worst. I end up sometimes throwing up and i get really hot. Im on atenolol 12.5mg in the morning and 12.5 in the evening. It helps with my heart rate for 5-6 hrs if i am cold, drinking tons of water and loading salt on my food. If i am hot, my heart starts racing, any excercise and my heart rate goes to 150+ bpm. I dont get headaches but my head goes numb sometimes at night. Ive had an echocardiagram done and an ekg and everything came back okay except for tachycardia. In the shower my legs turn blue/purple and beat red and ive heard thats a sign of pots? My heart also races in the shower. Im just so sick of being sick. I want to do what normal people do.
Also was talking to dr.diana on youtube. Thank you for attempting to find a permanent cure rather than masking it with medication. You are my hero. I have so much hope because you are taking the time to help yourself and others to find a cure. You are amazing.ht
Hi Nompancakes, I’m so sorry for what you’re going through. Believe me, you are in good company on this forum! I would tell you that most of us (am I right?) have experienced exactly what you describe (and as you mentioned, I knew the underlying cause HAD to extend beyond the gradual laxity of vessels that is usually described, because my son and I were both triggered with viruses — not an unusual start). Are you on Zyrtec (antihistamines)? Did that give you some relief? Do you have any symptoms of hydrocephalus (headache at the base of your neck, dizziness, symptoms worse with valsalva (straining), the “feeling” of pressure in your head, etc? Diamox may be a big source of help for you. After you hit those two things, will you let us know how you’re doing? The pre-clinical trial testing for dysautonomia/POTS/EDS is about wrapped up and I I found what I thought I would find. Next is TREATMENT TRIALS!! Pulling it together right now. Did you already send in your symptom checklist (under “Articles and Handouts”?). That will guide us as to your next steps. Dominoes start to fall and depending on where you are in the process, we start treatment there. Cool? There IS HOPE for all of us. It took looking closely for the SOURCE of the problems to know how to treat it appropriately. Our treatment is not “symptomatic treatment”. Stay close by? Big hug, Diana
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!
We share so many similarities. I started out like you. I kept getting told there was nothing wrong. And just toughen up and if I would exercise more I would feel better. The real surprise came during the stress test yes over two years to get that simple test done. Less than three minutes into it and 20 seconds on incline I had a heart rate of 272 bpm. And a 50bpm jump in resting to standing tilt test.
Hi Robert Elrod ii, Silly, I know, but I felt almost euphoric after my first tilt table test, confirming my suspicions! I assume they already ruled out carcinoid and pheochromocytoma with you, right? When I had my first TTT, I was in great physical shape. The doctor even commented on my leg muscles *blush*. I walked in with the complaint of “inability to exercise” and left with “a prescription to exercise”. Soooo glad we’ve gotten past that! Did you try Zyrtec, perchance? (forgive me if I’m repeating myself… So many people, so many meds.Hang in, my friend.
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.
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.
Hi Nompancakes, Yes, heat is our enemy for sure! Are you on any antihistamines, BTW? I wonder if they would help some of your problems, including your tachycardia while supine. Let us know? Big hug, Diana
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.
That was one of the signs picked up by my cardiological testing – tachycardia at night, 146bpm when doing nothing. I noticed it and questioned my cardiologist but he just dismissed it and gave me a wry smile, a ‘nudge nudge, wink wink’ kind of smile. I think he was hinting I was having nookie – I WISH! No, the tachycardia just happened all by itself, whilst doing absolutely nothing, not even dreaming.
Regards
Barbara
(UK)
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Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; GERD; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Mild Scoliosis; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!Yes!!! Barb, the doc at Mayo said I MUST have been woken by something — a bad (or good) dream, hubby snoring, or whatever. *eyeroll* Dr. McDonnell showed holter monitors on us that showed how we spiked at night time — and it wasn’t rare at all. In fact, our average heart rates were often higher at NIGHT TIME than in the day time. THAT is NOT NORMAL. After antihistamine treatment and mast cell stabilizers, that symptom stopped for me, for years!!! But now that I have a torn rotator cuff, fibrosis, etc, it is coming back. This is not good!!
Hi Diana, I have been re-visiting some of your videos, didn’t you say in one of them that intra-cranial pressure raises at night (or was that just when you lay down)? If it is raised, then your body will have a difficult job getting the head perfused with sufficient blood. So what choices does your body have, does it raise your blood pressure ? – probably not as effective under the circumstances, so it will have to raise your heart rate ? What do you think ?
Also, I might understand why I feel better sleeping sitting up. I have been watching the ‘SENATE MEETING ON BILL S-204 CCSVI MS Ottowa Canada’ on YouTube which took place recently. Dr Zamboni and a Dr Zivadinov are participants. Dr (Prof ?) Zivadinov talks about the internal jugular veins being ‘open’ when you lay down, whereas they are ‘closed’ when you are upright. I wonder, when they are ‘open’ are they engorged ? Could this be an additional cause of autonomic symptoms gone haywire, at night, as it compresses the vagus nerve ?
I have terrible symptoms when I lay down and I know several others on this forum do too.
Regards
Barbara
(UK)
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Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; GERD; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Mild Scoliosis; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!HI Barb, I agree — I have little doubt that those of us who have damaged veins and/or damaged valves at the base of the IJV, have more trouble when we are supine, because blood fills in those veins (as opposed to the vertebral veins). I recommend that most everyone sleep with the head of their bed slanted up about 3-4 inches, and when I become inflamed for whatever reason, I sometimes need to be almost completely vertical! I use a soft cervical collar (and now a posture brace) when I’m inflamed. HUGE HELP. In the upcoming trials, we’ll be addressing this, as I believe we need systemic treatment for this condition. It makes sense — why should our IJV’s be the only messed up veins in our bodies?! 🙂 Diana
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.
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!
Hi Nompancakes, TMJ or jaw bone malalignment has been shown to potentially increase intracranial pressure. Have you ever tried wearing a mouthpiece at night time? HUGE help for me… Zyrtec has an added mechanism for us, besides being an antihistamine and is worth trying, IMHO. 🙂 I’m curious if you got to try Diamox? Hang in! 🙂 Diana
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
HI Nompancakes, As far as Zyrtec goes, in Canada it is over-the-counter, but is called Reactine. Hope that helps…. No Diamox and flying? My recommendation is a barf bag. ha. Sorry, but we don’t have many options for decreasing our pressure (which is lousy). My son used to faint whenever they changed the cabin pressure. My friend, with hydrocephalus, would vomit and maybe pass out. Yikes. I just didn’t feel well, and couldn’t seem to recover when we landed. That is pretty typical for “us”, I think. On Diamox as needed, it is smooth flying! Yea! I hope you get it in time! 🙂
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? 😛
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