RecipeForDisaster

I get it in both ears a lot. The only thing that has helped is metoprolol. It's very irritating, particularly when trying to sleep!

Just to pitch in here, since I hope I'll make you feel better... I think I have a great life and am very happy overall, despite not ever feeling well or being able to work full time or do all the things I want to do. My husband is wonderful and we either adapt activities to what I can do, or I just push through if I'm able. Sometimes I end up passed out in the woods, or just feeling extra bad, but that's the tradeoff. We have made a good life anyway. No kids because I can barely take care of myself, but wonderful pets and I'm good with that. I don't feel like my illness has ruined anything. Of course it sucks, but it's the hand I'm dealt...

I am in a similar boat and I know there are many others. I don't even have a solid dysautonomia diagnosis yet but am, finally, starting to be treated for it. That is, midodrine and metoprolol in addition to all of the salt, stockings, etc. All I get is "it does sound like a dysautonomia". Since I have not been easy to diagnose, it seems that all of my specialists and primaries are fine with not knowing what is wrong with me. The only reason I am still getting tested is that I am seeking it. I often feel like it is not real (because of not having a label for it) and I just need to fake my way through life as if I feel okay. I do have more autonomic studies coming up in December.

I can handle a couple of cups of coffee, but no wine at all and only half a beer. Anything more and I get very bad pounding tachycardia, with lots of malaise and flushing, and nothing helps it for hours. I don't get even the slightest bit buzzed. It's not worth it even though I am a huge craft beer person.

I have this exact same thing. Low BP and almost like the physical symptoms of getting scared out of my mind who'd being perfectly mentally relaxed and ready for sleep. I haven't figured it out but the only thing that has helped is metoprolol. It keeps my heart rate below 160 and lessens the pounding annoyance. I can still SEE each heartbeat through my clothes. It's still the number one reason I don't get enough sleep. I also take midodrine but I don't think it hasn't affected this-I take my last dose before 4pm (and go to bed by 8, party animal that I am). If this is going to wake me up from sleep, it's almost always right at 3am. Like clockwork. I end up getting up for the day because I know I will just spend the remaining 3 hours in bed trying to sleep to no avail. I don't think doctors can understand that it's like having a fast drum on your chest with the addition of nausea and other stuff from it. Good luck sleeping like that. I have tried everything natural or OTC for sleep. When I'm having trouble with this, nothing works. If I'm not having a bad night of this stuff, I fall and stay asleep nicely on my own. Before metoprolol, I had this every single night. It was horrendous. My theory, for myself, is that this is from extra low BP. My body trying to compensate for it. I have this idea because when I've gotten out of bed for the day ann 3am because of it, my BP has consistently been lower than usual... usually low 70s diastolic. I'm quite unstable on my feet as well, and often fall or collapse on those mornings.

I agree, I can't really place electrodes myself, and it's not great for moving around unless you tape the electrodes in place.

My unit I still a CMS3000, I believe, and the copay was about $30. It was a lifesaver when I had more trouble with my shoulders... got me past post PT excruciating pain. It's definitely a big help even now. I'll get in bed with it on and melt away the back, neck, and shoulder pain.

I use one and it helps quite a bit while it's in use and shortly afterwards. You can't use it very high up your neck, but particularly for my shoulders, it had helped a lot. My unit was prescribed through PT so it was covered through my insurance. There are few drawbacks except for wearing it out of the house and moving electrodes accidentally. Sometimes I tape them in place. I cannot take NSAIDs so I really appreciate having my TENS.

I had my MRIs and MRAs last night. Every staff member said I was nuts to do them all together and that it would be very difficult for me... they were really nice, though. I really found it a piece of cake. I am sensitive to noise, but it wasn't that bad other nan one startle from the first sudden, loud sound. Their headphones weren't good and I couldn't ear the music over the noise... it took about 90 minutes with no breaks and I didn't budge all that time. However, I was too faint to sit up after all that, let alone stand, so it took me a while to get going. I should have results soon.... neurologist gets them Tuesday.

Easy for them to say it's no big deal when they aren't feeling it. I don't care if it's not serious, although of course that's too low a BP, but it's still causing plenty of suffering.

This is one of my biggest problems and it has always been ignored by doctors. I've been as low as 70/45 at 3am... feeling too bad to sleep. When I get up, I'm very wobbly, and I don't find that walking around helps... nothing really does. Air hunger goes with low blood pressure or tachycardia for me. My heart pounds worse the lower MGM pressure is and there is no sleeping through that. i don't think I have POTS but some other kind of dysautonomia. This seems to be nocturnal hypotension, but although it is a huge deal to me, quality of life wise, it just doesn't seem to be important to anyone else.

I have had staff members put ice packs on my neck and head when I have passed out... I'm not worried about what will happen to me (I pass out enough alone and with others) but afraid they will freak and call EMS. Good idea, I will see if I can find someone knowledgable there. Thanks for the well wishes. Apparently, if certain findings are present, I will go to NY for a standing MRI.

Thanks. I decided to try to go with the flow and make a trip to the company he wanted me to use... because I can have all 4 scans done at the same visit. I don't be know if he ordered any standing tests, though, and I haven't gotten a call back. Plus, they arranged this and didn't give the orders to me, so I would have had to had them send the orders somewhere else. The company told me they didn't see any contrast in my orders, but he did mention it. Not sure what to expect... I'm not just concerned about allergies but even just the IV because I have been passing out when I get stuck now that my BP is so low to begin with. I'm not afraid to pass out and not afraid of needles, but I am dreading how they will freak out if I am on the floor. i hope they have good music-I'm going to be there a long time! This is booked for 9/1.

I saw a new neurologist in Boston yesterday. He is going to repeat my TTT but with cranial Doppler, in December... he wants skin biopsies for SFN, an MRA and MRI of the brain and neck, and maybe some other stuff. I asked if he thought all of that was really necessary and he said yes. It sounds like it's all an hour or more away from me since he wants it all done by providers he knows... so the logistics are an issue since I don't drive more than 30 minutes alone. I am a little scared about the MRI and MRI, particularly the contrast. The biopsies make me a bit nervous as well. Can anyone shed any light on any of these? I have had some improvement on midodrine-I started it last week. That's a relief but obviously it's not enough (maybe 30% better for a few hours?) and I try to limit how much I take. Plus, I can't take it at night which is often my worst time. That and metoprolol, plus, to a tiny extent, compression, are all that have helped me at all. I kept an hourly BP log for a few days-in MD offices it is running 15-20mmHg higher so it's very misleading. It looks adequate when I'm there but I get home and can be 75/45 soon after. The neurologist told me he had a patient just like me, from Hawaii, who he was never able to figure out I left a little disappointed about the lack of answers, the dread of these tests and hte travel, and that story about the other patient.

I have not been diagnosed with Mast Cell... but then I really haven't managed to get a diagnosis other than idiopathic hypotension, syncope and collapse, tachycardia, and other useless diagnoses. My doctors told me that I might need extra epinephrine in case of an allergic reaction while on metoprolol, and thankfully I haven't been able to test that yet. I carry about 6 epi-pens anyway. I haven't really seen a connection between allergies and low blood pressure, outside of anaphylactic reactions, but maybe?

Yes, I have allergies and very bad asthma. I was really afraid to take metoprolol but started at a very low dose and worked up. Knock on wood, I have had no trouble with it and it has helped me feel better with less tachycardia and pounding. I take 25-37.5mg daily in the extended release 24 hour form.

Tough day, hours spent at new cardiologist this morning! Came home and had sour cream and onion chips, a chocolate bar, and some pistachio ice cream with chocolate chips. That's better.

I just want to tell you that I reached a diagnosis "dead end" because of a "normal" TTT as well. I did not have norepinephrine measured and there is zero detail in my results, only one BP measurement for instance! I also think that the stress and rush of getting to the city, parking, finding the place, etc. made my numbers look better. I always have higher BP when stressed and I do know that my BP was under 90 for a good portion of the test anyway. I was feeling faint but didn't pass out. Apparently that is okay? I am seeing three new doctors in the next two months and don't know what to expect. Honestly, I don't have a notion of what I think I have, I just know something is definitely wrong and it really seems autonomic. You are not alone!

I can only handle half a beer anymore (I never got affected by any type of alcohol before, or got hung over, no matter how much I drank before, hard liquor, etc.). Oddly, I can't drink any wine at all. I have tried a literal SIP and still had terrible pounding tachycardia and profound overheated feeling later on. That's what happens if I drink even one whole beer. It's sad because I love craft beer and now I can only share -one- with my husband.... no wine tastings either...

I'm in the exact same boat. Apparently improperly done TTT, and my report showed only the BASELINE heart rate and blood pressure, not one reading during the test although I know my pressures were below 90. Grrrrr. Doctor didn't see me either. Thank goodness my test didn't use isoproterenol because I don't think I could handle it. I can't get in to another doctor until August. My TTT was in January and I didnt get results until March or April. I'm also getting worse and worse. I hope you find an answer as well. I'm thinking I have cerebral hypoperfusion which they did not check for. Also, the stress of getting to and around Boston, parking, trying to stay on time, finding the place in a rush... all of that improves my blood pressure. It was definitely higher because of all that, and I bet your situation was similar.

I never got an EOB, or any inkling that there was a problem! It's weird that they wouldn't hill blue cross but would still list them on the hill as paying $0. I will certainly call their billing office and the insurance company, but the problem is that I can't until Monday.

I had my TTT in January and it came back with absolutely nothing helpful. It was ordered by, and a prerequisite for seeing, a neurologist at the hospital that performed the test. I learned later that it wasn't done right and others have had false negatives there. Grrrr in itself, right?? Just now, after everything is closed for the weekend, I got a $2,000 bill for the testing (which I will be repeating elsewhere after seeing a new doctor in August) . I have very good insurance company which they had recorded months before the test, and was never told there would be ANY bill let alone a giant one. I don't mind a copay, but seriously? The bill says insurance company but says they paid ZERO. What?!?! It was ordered by a doctor and totally legit. I've absolutely never had trouble getting my insurance to pay for anything... I don't even need referrals although I did have one. Anyone have an idea to explain before I spend the whole weekend freaking out?? Not to mention, almost 5 months later...

I am on metoprolol for the same reason, and while it has helped with the tachycardia and pounding heart, I have plenty of times where I feel horrible with a heart rate of 80...

I would love to try that. We don't have anything like a hydration clinic but I live a bit over an hour from Boston. I just don't have anyone willing to help me, really. It doesn't help that they don't know what I have. The neurologist is an autonomic specialist, so hopefully he can help me... in 3.5 months I realize that having blood pressures sometimes below eighty is dangerous in itself...

The cardiologist didn't run a TTT. I had one (without cerebral Doppler) ordered as a prerequisite to seeing a neurologist who specializes in dysautonomia and it didn't show anything. From what I hear, the test was not done correctly, and I was super stressed about traffic, being on time, and finding the place, which always improves my blood pressure. I'm not sure I have POTS but it's definitely something! I don't have huge increases in my rate but I get dim and hypotensive when getting up. Lately I can't see at all (just about completely black out) when I get off the couch to answer the phone, for instance. I'm very wobbly and fell over into a grocery display today. My geneticist (who can't test me for anything because I don't have a diagnosis. ???) believes this is dysautonomia . She set me up with another highly recommended cardiologist who can't see me until August (yes I am on cancellation lists and begged for earlier appointments telling them I was not doing well), and I will see a new neurologist who will actually talk to me, also in August (same deal). No one knows what to do to help me... I think my cardiologist mentioned POTS but that it's rare (ugh). Once I came back with the negative TTT, that was it. I don't believe I have EDS as I'm not that flexible. I've never had standing norepinephrine levels checked. I guess I haven't seen anyone knowledgeable (although I saw a good endocrinologist who found nothing except high renin... a byproduct of low blood pressure). I might be hyperadrenergic based on my terribly pounding heart and fast rate despite being fit. I haven't found anyone who will prescribe me anything except for metoprolol for my tachycardia. I'm grateful for that but I do think I might need more treatment! I wish i could see more doctors but I can't get in to see anyone anytime soon! I have good recommendations for the ones I will see in August. I haven't had a systolic blood pressure above 110 for quite some time. I've been off the anti hypertensives for about 6-8 years... as my pressure came down my primary at the time removed one, then the next. I guess it's good not to swing not back and forth, but I feel like the life is leaving me as my pressure gets lower and lower. I make high calorie smoothies that I enjoy (peanut butter, protein powder, chocolate ice cream, banana, etc.), but I have been so nauseous I can't always get myself to drink them lately. Thanks for the help... keep it coming!