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Posts posted by RecipeForDisaster

  1. I’m allergic to NSAIDs and Tylenol does nothing for me, so I’m in a particularly bad place when it comes to pain. I use a TENS often and that does help... I use hot packs when I can tolerate them (they can worsen my low BP), Lidocaine patches, and distraction. It’s not great!


    Tramadol makes my Dysautonomia much worse and I was told to avoid it without even mentioning that. 

  2. My insurance doesn't require a referral, but the specialists always do. I'm told "sometimes ANAs are just positive for no reason and it doesn't mean anything". Mine wasn't ever until a few years ago and it is consistently now... the lowest it's been is 1:80 but usually 1:160. I can't find anyone to see who has a decent reputation, anyway. I guess there are a lot of bad ones around.


    i keep bringing it up to my doctors, saying I really think there's something worth checking out here, but I don't have anyone to see. I don't have a lot of joint pains, but I am tender in a lot of places. My other inflammatory markers are okay, though. ESR, CRP, etc.


    I saw the bad guy in June. His clinic discharged me and they won't talk to me. They are extremely dismissive. The guy told me I don't have lupus or RA, which I knew, of course!

  3. I saw a highly regarded hospital's rheumatologist who was the most dismissive, abrupt, unhelpful person ever. He started with "this is a dead end". I don't think any of my doctors will send me to another one - they barely wanted to send me to him, and then they were justified :( He didn't touch me and barely looked at paperwork or talked to me.

    My pattern is homogenous and nothing else, other than immunofluorescence, comes up positive. I feel sick all the time, though... 


  4. I'm barely functional. I collapse, wobble, black out, or pass out often. This while I'm on tons of meds and interventions... 15gm salt, 3-4L water, compression stockings, tVNS, sequential compression devices, etc. I really haven't had a lot of definitively helpful or positive results, other than my renin being high, a positive ANA, loss of weight, bone spurs and arthritis on my neck and back MRIs, my HR being high, etc. I haven't gotten to try lactated ringers yet, and now the only MD who might help with that "no longer works there", yikes!

    Doctors say it's not important or worthwhile to measure my blood volume. They're sure it's low, and they're already doing everything they can do increase or help with it.

    I do think I may be autoimmune, but doctors have been dismissive despite consistently positive ANA.

  5. I get really bad chills, crawling scalp, and "cold" chest pressure from midodrine, worse with higher doses. I don't have any side effects at 2.5mg but it's a pain taking it that often, and I'd certainly benefit from larger doses, even every hour. I never have high BP - I didn't as a teenager before I got sick, oddly. My BP is less than half what is was then. Yesterday it was 72/40 after all of my meds maxed out.

     DDAVP seems to help about 1/4-1/3 as much as a bag of saline. The beneficial effects are the same, it's just milder, and I can get headaches and and malaise which I don't get from saline. Being a pill, though, it's great to have. I do get a boost in my BP, less dizziness and weakness, etc. although it can mess up your salt balance. I had a very hard time getting it prescribed, but I am so sick, I sort of need all the tools that exist.

    I have clotting disorders, so although one doctor said it's time for a port and regularly scheduled IV fluids, it's risky for me. They are $30 a day copay and I am trying to save some of my veins (new IV every time), plus it takes about 10-18 hours to "properly" run the fluids because the slower they run in, for me, the longer they last. I still don't get more than 36 hours' benefit out of 2 liters of fluid, which is a major factor in my not doing them more often. I have to hang around the house hooked up for all that time, risking wrecking that vein, just to get a day and a half of relief. However, fluids fix EVERYTHING for me and I feel better than I ever do without them. I may try to get lactated ringers' soon so I can see if that lasts longer. I use them about twice a month lately because of all these factors. I can use them every other day if I want to - I mostly use them when I am desperate or need to be doing a little better.

  6. I'm not sure if it was me you're referring to, but I do take 2.5mg midodrine hourly a lot of the time. I don't have amazing results with it but then nothing is really super helpful for me except for IV fluids, and to some extent, DDAVP. I am allowed to take 60mg midodrine but I don't - I've only done that a couple of times and the side effects were too much. My BP is still quite low despite a lot of medications, salt, fluids, compression, SCDs... 


    It's great that he can manage 7.5mg midodrine - if it were me, I think I'd ask if it's okay to take that much every 2 hours if that's how long it lasts. I'm assuming he doesn't have high BP at any time. I was originally told to take 10mg every couple of hours - that did not go well side effect wise. However, I think the overlap must be okay.

  7. Metoprolol is the only thing that has improved sleep much for me. It partially quiets the pounding tachycardia. I do sometimes use melatonin, theanine, or valerian root to "cover up the sick feelings" and make it easier to sleep despite them. Magnesium taurate or glycinate has seemed to help, too.


    I haven't tried clonidine although I am sure it would help - my BP is far too low for me to use it.

  8. I have two 15lb $30 ones. One is not baffled or quilted so the weight clumps up badly. The other is great... it's quilted, and is super soft. I really love them and feel they help my BP to be a little higher, plus I do think they help me to sleep. I actually layer both even though that's supposed to be too much weight for me. I got them at Christmas Tree Shop and Job Lot, respectively. The non-baffled CTS one could be quilted yourself... the price is right! Good luck!

  9. I have been told that beta blockers interfere with melatonin, so I was told to take a little (up to 1mg) melatonin with my metoprolol. In my case, metoprolol enables me to sleep, because it quiets down my overactive heart. My sleep is awful in the first place and has been for ages.


    I take magnesium taurate or glycinate before bed as those chelates have helpful compounds for sleeping.

  10. My beta blocker dulls the feeling somewhat, and I am allowed to take more of it when the feeling is worse. I do take magnesium taurate for it as well, because it doesn't hurt. My heart is like a sledgehammer no matter the rate or situation. It would make it impossible to sleep if not for the beta blocker. I can easily see the impulse in several parts of my chest, neck, and abdomen. The weird thing is that my BP is low and I barely have a weak pulse in my wrist.

  11. It is incredibly disturbing not to have a diagnosis and to have meds thrown at you in hopes that they might help. It's better than not being allowed to try therapies that could work, but it's still very hard to swallow. 


    I'm on just about every possible therapy for dysautonomia and low BP... I don't know if I'm that refractory, or all the doctors are on the wrong track. They don't know what my issue is, but the meds should still be helping more than they are, and my problems keep creeping so that I'm consistently, slowly getting worse over time. I'm grateful for the small benefit I get from my treatments, of course. You are not alone!

  12. I didn't have your luck with Florinef (more side effects than helpful effects for me), but have been on midodrine for years. I'm on a lot of other stuff with it.


    Nighttime is one of my worst problems, too. My BP is so low that I bet I could safely take midodrine before laying down, but I won't. What I do is take 2.5mg every 90 minutes when I need to. That dose gives me no side effects and I can keep a fairly steady level.... I am allowed to take up to 60mg a day but I wouldn't. The side effects from taking 10mg at a time are too much for me. Its too bad there isn't a sustained release 8-12 hour version. You may need to talk to your doctor about something else to take at night or possibly something like licorice root to take the place of Florinef. That has been the best answer for me, including a beta blocker at bedtime. I am suspected to have low blood volume as well. Good luck!

  13. Call me crazy, but if one can contract their own soleus muscles, wouldn't that have the same positive effect as this is supposed to cause? It says that it makes the soleus contract. 

    I do find my sequential compression device to be helpful, but that actually squeezes blood up my leg in stages... the effect doesn't feel like anything I could accomplish with exercise. I'm going to try to actively work my soleus muscles whenever I think of it. It sure won't hurt!

  14. I've did have a home sleep study which did show mixed sleep apnea (no EEG), and I use an APAP every night. I think it reduced these episodes, which used to be pretty much continuous. Without a beta blocker, they'd be once a night, at least, and the "smoldering" would keep me from sleeping most of the night anyway. I'm not on anything that would exacerbate central apnea and I have no risk factors for obstructive. It's just there.

  15. I wish I could help, but I can only tell you I have similar problems... and the side effects from midodrine keep me at a 2.5mg dose every 2-3 hours, which works okay for me... no side effects and some good effects. At 5mg I get chills and crawling skin too severe to manage. At 10mg (recommended by my cardiologist because my BP runs so low) I got horrible cold chest pain and pressure. I depend on it, though, because it does bump the BP up.


    I wake up at 2-3am although this does seem better when I take the higher dose of metoprolol (37.5) . Pounding heart, sweating, hot, for absolutely no reason. It's nearly impossible to get back to sleep. I'm usually up for the day. Oddly, if I take the higher dose of metoprolol, I tend to get bad nightmares lately. Those will wake me up and I am often upset about the content. It's a rock and a hard place. If you can take a beta blocker, it might help.

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