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Everything posted by RecipeForDisaster

  1. I must have something other than POTS, but I did have a TTT while off medications, and one reason why I probably "didn't meet criteria " for another diagnosis is that when my BP dropped it didn't go a full 10 points every time. That's because I was already low, and 10 points between 130 and 140 is very different than between 94 and 84. The "super awesome neurologist guru" who ordered my testing before seeing me did not give me the pleasure of seeing him after that. What a waste, and a terrible experience. My next neurologist actually saw me and spoke to me before ordering testing. I mean, did the first guy imply that I had nothing wrong with me because it didn't fit his neat little boxes for one of a few diagnoses!?
  2. I do have the awful nighttime tachycardia and rotten sleep. The part about not actually seeing the neurologist resonates the most with me. I was excited to see a dysautonomia expert neurologist in Boston and waited almost a year... he required testing before I saw him and I didn't meet the criteria he wanted, so I never saw him and was ditched. What a feeling!! I thought he was going to help me. I have seen about 6 more doctors since then, and 3 have each put me on a different helpful medication. It's crazy but it's starting to finally work, I think! Hang in there, keep fighting. I don't feel good but it's a fair amount better than a few months ago. I'm on a similar regimen (midodrine and metoprolol plus lots of unrelated meds) with the addition of pyridostigmine just this week-it's helping.
  3. My cardiologist told me to take beta blockers at night, but I can take another dose or two throughout the day if needed-even though it's "24 hour" time release. I definitely didn't have an increase in syncope once starting metoprolol. Maybe a few more PVCs than before but that's about it. Now my heart rate "only" goes to 165! I'm working on trying to increase my midodrine without intolerable side effects... and am starting mestinon as soon as the pharmacy gets it in stock.
  4. This is my current Rx treatment regimen. It's working okay for me... I would say I'm 30 percent better on each of these. Midodrine has helped to cut down on passing out or collapsing. I am still not doing great, but it's good to have these. Nighttime is bad because I can't take midodrine when I need it, though. Hence why I'm out of bed before 4am for no reason today For me, I didn't have significant worsening of anything with metoprolol. It makes me a little tired for an hour or two after I take it, but I do that at bedtime so it's welcome.
  5. I can manage this symptom at 5mg but at 10mg it becomes an uncomfortable freezing pressure in my chest. I haven't tried it again because it was pretty bad. I'm hoping to get to the point where I don't get freezing at 5mg either.... but so far, I do, and extra clothing hardly helps.
  6. I have been vegetarian since 1989. I did have deficiencies in B12, iron, and D as I wasn't taking those (as a woman I think I would have needed iron supplements anyway no matter how much meat I ate). I eat a varied and very healthy diet, if anything, including -too many- nuts. I eat mostly vegetables, whole grains, and legumes. The extremely low B12 could have caused nerve damage and led me to dysautonomia... otherwise, I don't think my diet plays a role.
  7. 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!
  8. 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...
  9. 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.
  10. 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.
  11. 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.
  12. I agree, I can't really place electrodes myself, and it's not great for moving around unless you tape the electrodes in place.
  13. 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.
  14. 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.
  15. 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.
  16. 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.
  17. 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.
  18. 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.
  19. 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.
  20. 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.
  21. 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?
  22. 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.
  23. 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.
  24. 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!
  25. 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...
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