RecipeForDisaster

The head of my bed is elevated a few inches (plastic risers) and I do sleep my my side. I always have my legs crossed or supported so my knees are high to my belly or something. It’s automatic for me, too. I do try to squeeze my muscles when I’m about to pass out, but it doesn’t always work and/or I can’t always do it.

Feel free to PM for sources of ear clips. Mine are black if that helps.

I added ear clips to my TENS - even if you had to buy a CMS3000 like I have, the whole machine is only about $30. 

I take a lot because I used to be steroid resistant and really sick. Zafirlukast, spiriva, formoterol, and budesonide. I use CPAP at night which really helped me a lot (but I have sleep apnea which is how I have that). 
 

The tachycardia or dysautonomia cause an air hunger type thing, where I just " need" to breathe a lot (but it isn’t hard to). The asthma makes it difficult to do so without making me feel like I need to breathe extra. They really feel different.  

I have bad asthma AND very low BP, and I’ve tolerated and done well on metoprolol. I was hesitant but this one is very selective and never gave me an issue. Fast heart rates in themselves can make you short of breath, and being short of breath can make you tachycardic.

Non-selective beta blockers could definitely be a problem with asthma. I only had a very small number that were deemed safe for me to try... some of those lowered BP more than others. 
 

I take a lot of meds for my asthma and I have a very clear difference in shortness of breath from that vs. the other stuff.

Ooooh! I use vagal stimulation too! I am really hoping NIH will take me - I think I’m an interesting and very willing case to study. Thanks for sharing!

I'm picking it up tonight, and just have to figure out how to pair it with metoprolol and maybe diltiazem without getting too bradycardic.

I should mention that I’ve had to quadruple my metoprolol (with his blessing) over the past couple of years because I keep getting worse.

He said it’s worth trying! He doesn’t know how much the neurologist had in mind.

I can’t get a port or PICC due to clotting issues. I have a regular order for weekly fluids as needed, but I basically use them when I really need them. I need to preserve my veins, unfortunately. I get 2L LR over 17 hours or so, so it’s very helpful, but takes forever dragging a pole around. A mixed blessing for sure. I am very grateful that I have a case of LR hanging around !
 

Diltiazem does reduce heart rate (I’m a pharmacy professional) but I need more help with palpitations (it also lowers my BP where metoprolol hasn’t). I’m also having ventricular bigeminy which seems to be an escape mechanism when my HR gets too low (not really low, but low for my body). If I could replace some of the metoprolol with a little diltiazem (like 30mg), I’m hoping I could get better brain perfusion while taking care of my HR and palpitations. 

I sleep like absolute garbage because I feel so crappy. The most helpful thing I can do is get IV fluids. Metoprolol has been helpful, too. 
 

To a lesser extent, I have had some benefit from theanine, valerian root, and transdermal vagal stimulation, all without any negative effects. 5-HTP helped but gave me very vivid dreams - not worth it. 
 

I have never tried a prescription sleep aid. I have mixed feelings about trying them. Tramadol made me so weak I couldn’t even talk. It stinks because I have few options for pain.

I completely know where you’re coming from - in my case I don’t think any of my doctors really care that I get so little sleep.

Same to you! It’s been so helpful to have this community - I’ve gotten some great tricks and support here. 

I don’t have a problem with this one, and I took 10mg extended release last night. Taking 1mg isn’t always enough, as in, I don’t feel a difference. That sounds scary. I have had a kind of similar experience with tramadol... but my usual very low BP episodes don’t sound like yours.

I demonstrated vasoconstriction in my brain, which reduced my perfusion by 37% when I was tilted. That’s the problem... I don’t need vasodilation everywhere. My extremities are super cold, though. I get chest pain or pressure when I exercise, although I passed an exercise stress test. I’m having a stress echo in a few weeks. I’d like to find a stress MRI too.

I was hypertensive as a teenager 25ish years ago, but no, I never am anymore. My BP is half of what it was then. 

I only tried diltiazem briefly before changing to metoprolol. It didn’t change my palpitations or heart rate enough, but did impact my BP. Metoprolol helps those things without changing my BP. But, if I can help my brain perfusion with a little diltiazem, I’d like to try it.

I’m basically cold blooded and kind of assume whatever the temperature is... I’m freezing when it’s cold out (I use rechargeable heating devices) and blazing hot when it’s hot. I do much worse in the heat, though... it just wrecks me. 
 

I noticed recently that I was able to stay warmer after I’d gotten IV fluids. They were not warm but room temperature (cool!), so it wasn’t the temperature of the fluids.

It sounds like I’ve been partly figured out - vessels in my brain constrict when I am upright, and it severely decreases my cerebral perfusion. My neurologist suggested diltiazem, which I tried for my tachycardia and palpitations (switched to metoprolol which worked better), and galantamine. Has anyone tried the latter? I asked one of my cardiologists if I should try taking a little diltiazem with the metoprolol in a smaller dose... curious! If I could fix this, I bet I’d feel better. My BP is so low, it’s hard to vasodilate those vessels without making it worse!

I have galantamine on order at the pharmacy and will try it. 

I am thankful that I haven’t had a seizure, but I am working on the NIH program with a few of my doctors - fingers crossed that they will get me in remotely.

Systrom is another doctor mentioned in the post above mine. He’s also in Boston.
 

I generally don’t have great luck with the office staff of either of these, but I do have a remote appt on the 23rd and hope to actually receive a diagnosis after many years.

Hahaha "Hellmann's"!! I love it. They didn’t want to see me, so I don’t have the greatest opinion of them.

I’ve had it done. I did come up with unusual abnormal findings (HYCH, I think) , but I haven’t heard from the doctor yet, and it was a month ago. I don’t think Novak is taking new patients (I’ve been seeing him for years), and I did not have good luck with Systrom although his research is really neat. He wants to do an invasive cardiopulmonary exercise test on everyone.

Well, it’s essential for me to sleep, and sometimes it helps my heart rate or pounding. I feel worse if if I let myself "pant". I feel like I’m hyperventilating if I do - fast shallow breathing. 

Yes, I can call it dysautonomia. It’s just awkward because if most anyone has heard of that, they think POTS is the only one. This seems a lot more weird. It also doesn’t seem to explain half of my issues.

I provided a link, but it’s Hypocapnic cerebral hypoperfusion.

I guess you can! It’s amazing to me that I could over breathe at a rate of 6. It is never crazy deep, although my body would like me to. I’m not anxious in the slightest, it’s just an air hunger thing. It goes with my dysautonomia issues. 

I was also trying to relax myself from my irritation at the doctor trying to argue with me during the test. So, I breathed as slowly as I could.

in my case, I am forcing myself to breathe that slowly. I have bad air hunger, and my body just wants me to gasp... I think my normal rate would be 20 at rest if I let my body do that!

I have not heard from the doctor after my repeated TTT, but I did get the report, and it sounds like I have HYCH. I’m glad I might be on my way to a diagnosis (although it doesn’t explain half my issues including super low BP at home), but it kind of blows that it would be something so unusual that even I hadn’t heard of it. It doesn’t sound as legitimate as I’d like, you know? I know it’s real, but man, I don’t think it sounds that serious to the average person. I don’t know that there is any treatment, particularly that I’m not already doing, but I know for a fact that I can’t breathe less. I was breathing at 6 per minute for most of the test!! I’m always fighting with my body because it wants me to gasp (air hunger) and so I control it and do square breathing or other exercises ALL the time. 
 

The doctor came in to argue with me about redoing painful biopsies that weren’t going to be covered by insurance, and which I know wouldn’t be valuable, so my BP was literally twice what it was earlier at home. Plus, I had to go into the hospital alone, and I was a bit lost, and also had to travel into a scary city. If my BP was at its usual, and I had the 37% decrease in cerebral perfusion that I did during the test... I can’t imagine.

I’m hoping someone else here is familiar with this! It’s not too different from OCHOS but it’s not the same, either.
 

https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=&ved=2ahUKEwjewJKFl4ztAhXIxFkKHQDjDoQQFjAAegQIBxAC&url=https%3A%2F%2Fwww.ncbi.nlm.nih.gov%2Fpmc%2Farticles%2FPMC6157889%2F&usg=AOvVaw0GQx8Xb-c2Dutxgidr_7Ba