lumpchp

I was in the hospital recently (long story), and was hooked up to a heart rhythm monitor. While I was sleeping, several doctors rushed in and woke me up to do an ekg because they said I had been having runs of v tach. I was sleeping, so the only thing I felt was a little freaked out when they woke me up. Now they wasn't to put me on a beta blocker. I'm scared to go on one due to.my bp being really low lately. Anyone know what would cause this?

Like doozlygirl said, the folks at EDNF are great :-)

Ok, I finally had a ttt. I'm very concerned though that they missed a lot of my worst symptoms. 1. There was only one tech 2. I was laying down for an hour before the test 3. I was only tilted for 5 minutes... I was completely relaxed, and just as my hr started to rise, brought down and the tech said that I was done because they only tilt for 5 minutes. 4. That was it, I was sent on my way. I'm super frustrated, I feel that so much was missed. For one, I went in the middle of the day, after the worst of my symptoms. I'm worried now that I'll be told that everything was normal, when I know its not.

There are several subtypes of Ehlers danlos, I believe a blood test can only diagnose the vascular type... Otherwise it is based on clinical findings and family history.

I tried it once when I was symptomatic for days. I took half, because I'm also super sensitive and leery of that type of medication. All I can say, is I'm glad my hubby was home, cuz it made me VERY relaxed. I slept great lol. Honestly though, I don't think it made my bp any, lower, I think it just relaxed me, so naturally my bp and heart rate stayed low, since I was not crazy anxious anymore. Start small... It sounds like you could use some tlc... Try a half, run a bath, watch a sad movie. We forget that along with all that life throws at us, we deserve a little peace every now and then. I'll send you some calming Pacific NW rain vibes :-) Its really pouring...

I've always been low too, but since after I had my son, all the dysautonomia symptoms came out, and what happens is I'll have a pots episode,(bp drops, hr increase on standing) then later after I recover, my bp goes really high sitting down. my cardiologist says it's not common with dysautonomia to have the orthostatic hypotension and concurrent supine hypertension, and it's difficult to treat. Is yours high after an episode, or more random? Are you checking sitting and standing?

You should add a ? about our resting rate... Mine is around 60, its just so crazy that we can actually double our rates just from standing...

I think some of us, myself included have these kinds of palpitation issues directly related to our breathing. There was a post not too long ago about how many of us struggle with singing. When I had my first exam by a Neuro, he had me on a heart rhythm monitor, and had me breath normally, then hold my breath... And I was instantly thrown in to svt arrythmia, which returned to normal once I started breathing normally again. He repeated this several times, and it happened every time. I was dazed and felt awful after, and unfortunately I don't recall what his explanation was. I'm going in tomorrow for a full series of autonomic tests, and I know one of them involves this type of breathing thing, so I'll report back what I find out.

Glad you found this post and got it going again. I was ok during my first, actually bp was too low, and I got dizzy, lightheaded alot. I went in to spontaneous preterm labor at 29 weeks, and was put on meds and strict bed rest the remainder. 6 years later, after 2 miscarriages , I got pregnant, and again had low bp. This time was different though, so much worse. I kept passing out, just felt terrible every second. Worse than that though was postpartum up till now, I really think this last one broke me somehow. I never had the high blood pressure, but man was the labor fast when it came. I was on pitocin for 6 hours-and stayed dilated at 1, then literally within minutes my son was born. Same scenario with both. Not sure it helps with your question... I just know that pregnancy either caused my dysautonomia, or really turned up the volume...

Strange, I believe mine was also pregnancy induced, or at least that's what tipped the scale. I get the same feeling, but until you said gravity, I never found the right word. I'm in the Pacific Northwest, so maybe it does have something to do with low pressure, humidity... I know there is some higher instances of ms here, but it would be interesting to relate some dysautonomia issues as well. I really tend to get worse when the weather gets bad, which as you know, is almost all the time here lol. Not sure if it helps, but at least you know there is someone who understands...hopefully you get a break from all the rain, I could sure use one :-)

Does anyone else get bad throbbing headaches? Its been happening alot lately. Wake in the morning, and I'm totally fine until my head gets above heart level... Then stops when I put my head down. I've read a little, and seems it could be related to eds and/or low csf? Of course like many other strange symptoms, could be a potsy thing too I guess.

That's the thing, I have noticed them being unequal off and on for a while... Today after a bad pots spell, they both dilated and did not constrict when I shined light... Just another oddity I guess :-)

Ok, I have noticed that one pupil gets real big occasionally. This only mildly concerns me. The thing is, I just happened to be in the bathroom, had bent over the tub, and had a really bad pots spell when I came up. I don't really know what prompted me to do this, but I looked in the mirror after I got myself together, and all I could see was the black of my eyes they were so dilated. I did a cover test, and neither pupil reacted at all, meaning they did not constrict. Sooo strange... After a while, things went back to normal. Now I have had bad symptoms since, and sure enough, my eyes keep doing it every time I get a potsy feeling. Hmm, anyone else happen to notice their eyes do this after???

Ok, I hadn't heard this, but it totally explains why lately I get that potsy feeling when I try to sing my son a lullaby... I knew I felt odd when the doctor had me hold my breath too, just didn't understand why.

I was also tested for pheo before pots, it produces adrenaline surges similar to hyper pots. I think that's why they sometimes check blood metanephrine and normetanephrine levels when sitting, then standing during some autonomic evaluations.

Rachel, prednisone is used to treat pandysautonomia, and most patients report some relief of symptoms. Do they want to do this long term, or just a short cycle?

thanks so much for the info. I ordered the knee high and waist high ones in the lower number to start... On the bright side, I got the call today from OHSU dysautonomia department and they were able to see me this Friday!I was so relieved, its just an initial consult, but its a good start. I'll keep you all posted :-)

I've just been doing lots of water, and extra salt on food, and drinking gatorade. maybe I need to start the salt tabs... I have been trying so hard to just keep up with kids, I really haven't been able to focus on me. Looks like its time to do that.

I should add, I have times with bp and hr very low too. cardiologist doesn't want to try anything that may lower it either... A rock and a hard place :-)

Just did a search for the stockings, there are so many different ones! What do the numbers mean? Do I start with the smaller number?

Have not had formal dysautonomic testing. After pheochromocytoma was ruled out, a neurologist did a poor man's ttt at my local ER, and gave diagnosis of dysautonomia. After seing a cardiologist who did the same ( not very thorough ) poor mans tilt, he told me I had POTS, but that I needed further autonomic testing due to many symptoms involving heart, GI tract, joint hypermobility, and basically all my bodily functions are out of whack right now. I'll be hopefully getting scheduled at a teaching hospital soon that has QSART, and lots of other ANS studies available... But I've been waiting for 2 months now just for them to tell me that they can schedule me, I have Tricare insurance, and it is a huge ordeal to get authorization for such an extensive workup.

ok, so I have felt real bad lately. I have the "normal" pots episodes, followed by weird almost seizure like feelings, followed by really high blood pressure when its all over, and I sit down. Heres how it goes: My normal bp is around 112/70, often though, gets really high when Im sitting, or lying down, around 138/96 normal heart rate around 60 standing, bp goes to 76/68 or so heart rate goes around 150's at around 1 minute, it literally feels like ALL the blood has left my body, vision goes black or white, its almost like my brain feels frozen, like im in slow motion, and my body decides its had enough and begins the shaky, Im going to turn myself off now thing. If I can snap out of it in time, (which by now I usually can) I get down low, and wait it out. After this kind of episode, my blood pressure immediately shoots up to around 176/138 or so, and my heart rate goes back to a nice 60. So the thing is, Im extremely symptomatic lately. I feel like crap every day. I had a bad reaction to fludrocortisone, and dont think I could do midrodrine either due to already having supine hypertension. My cardio has mentioned adderall as a possibility, due to the blood vasoconstriction effect. Does anyone have experience on this? How does it affect your bp/hr? Something has to give here, I feel like there is no light at the end of my tunnel... For those of you who also have narrow pulse pressure- I definately see correlation between symptoms and pulse pressure being narrow. My question is, mine gets as low as 7 or 8! And this happens OFTEN. I do believe for us potsies it has to do with the blood pooling issue, and not actually being in shock, but this can't be good, right?? And why is it that the doctors either arent concerned, or they say, well your machine must have been wrong... I know i've got a lot here, but if anyone has any input please reply...

Me too, for a while there I seriously thought I was bonkers, till I found the people here. We may be falling apart, but at least we do it together :-)

I'm glad you'll at least be able to tell them, good luck :-) hey, have you ever noticed your pupils get different? I have that alot, and makes it really hard for me to focus too. My left one gets really big, and stays big... Oh the joys of dysautonomia !

Southbel, this sounds like iritis. Do you have any pain, or light sensitivity? If you have any of these symptoms or changes in vision, please try to get in before tuesday. Iritis is sometimes associated with autoimmune diseases such as ulcerative colitis, and crohns disease. It can be acute, or chronic. Acute iritis needs quick treatment so that damage to the iris and uvea is prevented. I am of course not a doctor, and not trying to diagnose, but I work for an ophthalmologist, and have seen this many times. Let me know if you have any questions.