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Everything posted by RecipeForDisaster

  1. I'm still having worsened palpitations on Adderall but also much better energy. My sleep isn't worsened by it, but then I take my tiny dose around 5am. The last few nights, other things have been keeping me awake (wind, pain) and I don't feel like a zombie despite lousy sleep. That's great in itself... usually I'm ruined by a bad night of sleep. I'm not on Facebook, drat. I've been reading about LDN a lot and the nightmares or sleep issues would be a real problem for me. I hope I don't get them! I'm also trying to figure out the best way to mix/store it since I am diluting the big tablets
  2. I'm feeling similarly over-optimistic on my tiny dose of Adderall. I was asking my husband what I'd do with my extra IV fluids if I never needed them again.... I mean, I can take twice the dose of Adderall if I need to! I know that's a crazy thing to think about after 2 days on it... but maybe LDN will also help and I really won't need fluids anymore!
  3. I'm so glad you are proving us right. If just a few thousand more doctors are convinced, we'll be in good shape! I'm so happy it's been so helpful. I know that if I could get my fluids more often, I'd have a much better and more normal life.
  4. Thanks-I think I'll keep taking the tiny morning dose and see how I do. Did you have worse palpitations and chest discomfort from it? If those go away, it'll be a total win. If not, I think it will go in my bag of tricks to use when I'm doing worse, or need to be super useful... not every day. I do think I had an easier time exercising, and Al's of not blacking out when I stood up today. I was definitely more sharp and alert (and awake even though I woke up at 3am) . I don't have ADD so I'm lucky I got it to go through insurance.
  5. I may be making some progress thanks to a new doctor. He spent hours with me and had some interesting findings and ideas. I just took my first dose of Adderall. It was tough to get insurance to pay for it because I'm not a kid. The prescription is for 5mg daily but I'm trying half a pill for now... other than taking it as early as possible in the morning, any tips for making the most of this? So far I am not loving the increased heart pounding... I could take some more metoprolol but I feel like that would undo some of the good effects. We are hoping for less fatigue, better exerci
  6. I have the same pattern: I'm relieved when I finally do get the cold or other infection because it explains my worsening and tells me that I could go back to my baseline once that's over. Also, I have pretty bad asthma, and do well in metoprolol. Some beta blockers are very specific and don't affect the lungs as much.
  7. Me too-and like clockwork, I wake up at 2am blazing hot when it's so cold I was almost shivering when I went to bed. Nothing helps and I'm awake for a good hour each night trying to cool down. My temp is about 97.2 as well. Mestinon seems to help somewhat in regulating my temperature, but not enough.
  8. I love hemp hearts and chocolate. Part of my treatment plan is soaking in Epsom salts, and I take chelated magnesium each night. That said, I know some people add a little Epsom salt to their electrolyte drink.
  9. For me, there's nothing that's remotely as helpful as IV fluids, which I could get daily... but I want to keep my veins nice, so I don't. The next best thing is salty broth, or my homemade electrolyte drink. My doctors recommend Banana Bag oral solution, and it's good, but I make my own with a little juice, some Lite Salt which is potassium, and sea salt dissolved in water.
  10. I often get the feeling doctors are saying I should just deal with all of this, and I've been told I need to just get used to it. "It's not dangerous". (Other than BPs in the 70s) Well, that's easier said than done. Break your arm? It's just pain, not life threatening.... get used to it, good luck!
  11. If I take too much beta blocker, I will get beats at 50bpm interspersed with beats at 100bpm which is really disconcerting. I have passed out during this, but at the time I was passing out so often, who knows if the PVCs were even part of it. In my case, I think the ventricular beats were not actually premature but my body trying to force my rate up - more like an escape beat. I keep wishing that we could "try" our symptoms out on our doctors, families, friends... I'm certain that some of these events would suddenly be a bigger deal, if they felt how bad we felt! i hope
  12. Sometimes a flip flop. Sometimes just a beat twice as fast as the one before and after. Sometimes just a very hard thud. I had a thirty day monitor that showed them all.
  13. I was having bigeminy and multifocal PVCs and neither cardiologist was very interested, nor did they want to treat the PVCs. They bother me but it's just something else I have to live with. I do think they are not as bad when I am doing better.
  14. I've tried florinef - which helps many people a lot- as well as lots of other meds. For me, the fluid retention seemed to staying outside my vasculature in the forum of edema and not increased BP. Other than IV saline, nothing has made a dramatic difference in my dizziness and faint feelings. Midodrine and mestinon help but not a huge amount. I'm complicated and have a lot of issues, though!
  15. We can't give medical advice, but I can tell you that's 4x what I started on I then went down to half of that due to swelling... and have tapered down to half of THAT. I had trouble with impressive edema, headaches, and not a lot of positive benefit. Many swear by it, so I hope that you have great results! You do have to push fluids and salt to make the drug effective. For me, it seemed that all of the fluid retention it gave me was outside my vasculature.
  16. For me, I have had good results with long acting metoprolol in low doses , and I'm allowed to take twice as much if I need it. I find that if I take double, I end up with bradycardia with bigeminy too. I have to keep my rate above 50 to avoid bigeminy. I think it's the heart really trying to get that rate higher! I hope that you can find comfort soon. I think normal people have no idea how uncomfortable it is when your rate is, say, higher than 90 when doing nothing, or under 50. Laying in bed, I am bothered by a rate above 80 or so. It used to be in the 60s... and now it is if I a
  17. This is very interesting-a place recently opened near me and I was just reading reviews last night! I think I do enjoy it if nothing else. It's expensive. You have to shower twice, so that might be a bit challenging. I adore soaking in a warm tub with lots of Epsom salts, and floating is especially nice, but my BP can't handle very warm water anymore. I think our place has 10" deep water with 800 lbs of salt in it, if I remember right?
  18. Metoprolol succinate but I have low BP and not high. I'm using it for tachycardia and pounding heart. It helps, but not for the whole 24 hours-barely 12?
  19. My arms are quite thin... luckily we can both do a manual reading. I usually don't do my own because I don't believe the reading, but when I do and have my husband (a nurse) check it, it's very accurate. It's not easy to do it correctly because of propping the arm up correctly.
  20. My legs get insanely itchy, and mottled gray, when I walk sometimes. It must be a blood flow issue but no one has seemed interested.
  21. Ditto here-no BP machine even in clinical settings has been accurate for me for a while. I'd love to have the auto recording of a machine but all of my measurements have to be manual if I want a true result.
  22. I was extremely hesitant to start any meds at all, particularly any I had to take daily. I'd be sunk without them so little by little I accepted them. It goes against my grain but is clearly needed.
  23. I take a bunch of my meds daily including the beta blocker, florinef, etc. I take a starting dose of midodrine and mestinon each morning and add more doses if I need them. I can take several more doses of each if it's not a great day. I also add doses if I need to be doing particularly well to get through an activity or just make sure I don't collapse. I don't do well any day, but some days are worse than others so I need the extra meds available on top of the baseline ones. We are all so different and many can just take meds as they need them.
  24. Repeat explanation of why this would help and a request just to let me see if it helped. All of my doctors were unwilling to prescribe it until my kind hematologist said "okay". That was after I suffered through a week of mostly being on the floor, blacking out and not being able to eat or walk. He knew there was nothing else that could be done for me and he has a heart. One cardiologist said the same, "if you can drink you don't need IV fluids". Now that he has heard of how helpful the fluids were, he's willing to take over prescribing. Aggravating!! It took me months of hard work
  25. My tablets are 60mg and scored both ways, so I started with 15mg. I'm glad you didn't have issues starting with 90mg! I have better exercise tolerance and temperature regulation on it, but it's not dramatic. definitely ask your pharmacist about the interaction. I tried a supplement that had rhodiola and didn't have much effect, but maybe you will.
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