RecipeForDisaster

Oh yes exercise is very helpful. I have several doctors who have said they'd love to try clonidine, but my hypotension precludes it.

If it wasn't for metoprolol helping to calm down my heart, I wouldn't sleep. I add theanine, or Benadryl if it's a really bad night, or melatonin if I haven't gotten outdoors. I still don't sleep very well but these help.

I have this to quite a degree... pyridostigmine helps somewhat, but nothing else really has. I have a rechargeable heating pad on me now because I was so cold and couldn't warm up.

I see him. I have other recommendations as well, sent to the above two posters.

I have a very minor respiratory infection and it's throwing me way off. BP 10 points lower, HR 20 points higher than they were, I'm back to blacking out when I get up. I'm probably heading towards IV fluids for a bit... even after Adderall which was really helping. I'm very glad to have the fluids on hand, but these setbacks are discouraging.

Transcutaneous pacing involves electrically stimulating your heart to beat faster through small shocks and electrodes.... I'm quite sure you'd know if you had that! And, it's unlikely you'd get to leave without an implanted pacemaker unless you had some other cure for the need for a pacemaker.

My guess is what is called artifact, lines on the EKG from movement or other external factors, that caused a line that looked like a paced beat to the monitor. It can be confused.

PM sent.

I do plan on starting at 1mg nightly for 2 weeks, then 3mg, then 4.5mg. I have some pain but I am really pretty used to it and I don't list it as one of my problems. I use TENS, heating pads, chiropractic care, and distraction to manage my pain. There are too many other issues that bother me and impede my life more.

I'd be using this to improve energy and maybe modulate my autoimmune issues (which aren't diagnosed). Thanks-I hope I do only get a few nights of weird dreams! I got a dropper bottle to mix it in and will start soon. I just want to be able to see which effects are from this, which are from adderall, and maybe some are just me getting worse or having a bad spell like I think I'm starting now.

I'm glad you know what your cause was and can get better!

i skipped my adderall yesterday because I don't want to take it every single day (approved by my MD, I can take it just as needed too), and I had a very rotten day. Since I only took it for 3 days before that, and the dose is so tiny, I don't think it was just that... we'll see how today goes with adderall back in the mix!

I never get rid of palpitations and that does drive me nuts.

My doctors have all told me I don't need a rheumatologist... I have some joint pain but more musculoskeletal pain. I'm going to have the Mayo autoimmune dysautonomia panel run, once some doctor figures out how to order it and get preauthorization, and maybe I'll need IVIG or immune suppression based on those results. I kind of hope not but if I need it, I'll do it. I'm hoping LDN helps either way, no matter what the heck is wrong with me.

I have been feeling better than I have without IV fluids in years... it's pretty amazing. I'm eager to DO things, and I took a lovely warm bath just to push my limits!! I just feel more like my old self which is so wonderful. Not like a garbage can of suffering!!

I sure won't get rid of my fluids, not until they are years past their expiration dates anyway. The copay is $30 per dose! I know I will definitely crash again, and maybe I won't even be able to get Adderall continuously between insurance restrictions and prescribing issues (I should be good as long as that one doctor is around!). Not having to stick to an IV pole for 7 hours a day is glorious, but I'm still grateful to have them on hand.

I didn't have high hopes for Adderall... I saw it as a last ditch, desperate kind of thing. I wasn't sure I was willing to try it, but am so glad I did. Soon I'll start LDN and maybe I won't even need Adderall anymore!

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 myself. I have a year's supply!

This doctor is wonderful and smart-he actually recommends this forum. The only problem is, he's really busy with a small staff so they do not do a good job on follow up/returning phone calls/making things happen. That's frustrating. I'm not sure he will actually do the Mayo panel-he wants someone else to order it, and I don't think they will. For some reason, I don't think my neurologist is interested in this. But, it's been years of not having a good doctor and feeling very uncared about.

I do have a newly positive ANA and this doctor thinks something autoimmune is definitely going on. Other doctors don't really think so. Also, most of them don't think MTHFR is a big deal, but I know it means precautions need to be taken. I ordered a high dose methylfolate supplement, because I already take methylcobalamin which saved me from B12 deficiency.

He didn't have any recommendations for the tracheomalacia other than see a pulmonologist I have way too many doctors already... and I don't think that one is really a big deal right now, especially since I always use a CPAP anyway.

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!

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.

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.

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 exercise tolerance, and higher BP. Having to have a paper script is a pain when the doctor is far away.

I was also prescribed low dose naltrexone. I'm fairly eager to try this although I never considered it before the doctor brought it up. I was skeptical until I read a lot... I think it's promising! I really can't try it until I figure out how helpful the adderall is and if the side effects are tolerable. Otherwise I won't  be able to tell which effects are which. If anyone has any helpful tricks for this, too, I'd appreciate them. The only concern I really have about this one is potential nightmares, because I get that effect from other stuff, as benign as 5-HTP which helps me sleep but causes intense nightmares.

One other diagnosis he made was tracheomalacia. I would think that could explain my sleep apnea. Interesting-I had never thought of this either. 

There is some testing coming up including a "Mayo panel" for autoimmunity and MTHFR testing. I'm sure I have that based on family history and my response to supplements. If anyone has experiences with these, please share!

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.

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.

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.

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.

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!

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 you get good results with Florinef!

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.

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.

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!