RecipeForDisaster

I'm written for 1500mL 3 times per week or as needed. Sometimes we try to leave the access in and do two days in a row. No one minds if I do it daily or every two weeks, so I decide based on how bad I'm feeling and if I can actually be hooked up for a few hours. If I know I will be having a rough patch, need to be at my best, or have been unstable, I'll do fluids anyway... and I did them on a schedule at first, for a few months. I definitely did better, but between logistics and wanting or save my veins (plus $30 a pop copay) I decided to save it for when I really need it. Just knowing it's there is very nice. Will you have someone come to access the port, say, weekly? I'm happy for you, having this option at home!

I couldn't try propranolol due to my lungs, but I haven't had any of the side effects you mention with metoprolol succinate other than a little sleepiness-I take my routine dose at night so it's welcome. I'm only on 25mg which does take the edge off the tachycardia without lowering my BP any further. If I take another half tablet at another time of day (I'm prescribed to take up to 50mg daily as it does not last 24 hours for me, and if I'm not doing well my heart rate can still run high), I have more PVCs which is bothersome. Otherwise, I'd take another half tablet more often. Just my two cents-it has been very helpful to me. It has lessened the booming palpitations which lets me sleep a lot better (not well but better!). Hope this helps.

I hate to tell you I had a horrendous experience with Walgreens. I use a local provider of BioScrip which might be available to you in your area. They have their own nursing but I don't use them. Usually, if you call a local infusion company, and they can't take your insurance, they'll find you someone who can. Or, you can ask your insurance company for help. I actually work in this industry but not for the company I use for my own infusions I think you're better off with a nearby branch of a national company, or a totally local one. Good luck! It wasn't fun setting mine up, but we are good now,

I trust you guys and my primary isn't actually arranging the urine collection test as the neurologist asked him to anyway, so I won't go through the bother of the test! My renin is high, and I've been on licorice and then florinef for a while as well as salt and fluids. I sure don't want an artificial normal result! I guess I won't get my blood volume measured. I'd be willing to go to Yale for Daxor, but most of my doctors say it isn't worth doing. I think they are pretty sure I have it and there's not much specific treatment anyway.... especially treatment that I'm not doing.

Interesting... it was a well known autonomic neurologist who ordered the 24 hour urine electrolyte measurement to estimate blood volume. I would think that would be extremely variable considering your electrolyte levels fluctuate!

I'm supposed to have testing done using 24 hours worth of urine electrolytes to estimate blood volume... my PCP is supposed to get it done so I don't have to actually do the test in Boston, but I haven't heard anything about getting it done-and in the meantime they started me on licorice and then florinef, so I don't want to bother if the test will be skewed. i am nearly positive my blood volume is low and most of my doctors don't think it's worth testing for, partly because there's not a specific treatment for it. I kind of AM being treated for it, florinef, IV saline....

My doctors are often skeptical that even 20+ tubes of blood can cause a problem.... once one said that isn't even half a blood donation. I asked if I should be donating even half a donation of blood with my BP in the 70s.... duh! I was just thinking physiology and how often the body loses and replenishes small amounts of blood without us even realizing it sometimes....

Personally, I wouldn't think that amount would really affect you, but I have had significant issues with having more than 20 vials drawn at a time (yes it IS a lot of blood). I have collapsed trying to get back to the car and also fainted in the lab right after the band aid went on, which has never had anything to do with the needle. I'm not needle phobic and IVs or injections don't do this. Lately when I get a lot of blood drawn I get IV fluids right after and I'm good. I don't think doctors realize how many different tubes are required for all those tests... it can add up.

Many of us lack intrinsic factor which is but needed by the stomach to process oral B12 or B12 in food. My great grandfather died of pernicious anemia but I don't have it per se. Other meds and supplements can also make it hard to absorb in the stomach. That's why sublingual is a much better bet. I'm told by several doctors it's as good as injectable, if you use it correctly.

It may make you a little tired. Mine wears off as time goes on, sometimes after as little as 6 hours. The most important thing mine does is lessen the pounding so I can sleep easier, but it helps during the day too.

I was very scared to take metoprolol myself. I started with 12.5mg very carefully. I use it for awful pounding palpitations and fast heart rate. It absolutely helps. Without it I sleep very little if at all. Both of my cardiologists say that metoprolol is a "lousy anti hypertensive " at lower doses. I can take up to 50mg daily if I need it, but I almost never do. My BP can run in the 70-80s and I still take it because there's very little effect. I do think lowering my fast heart rate does help my BP come up. My resting rate is back to the 60s-70s where it used to be. Even sitting here with a rate in the 90s or higher felt uncomfortable to me.

That's the one I take, I need steady metoprolol in my system for as long as possible. I take it at bed time. I don't find that it works for the whole 24 hours but I can split it and take it every 12 hours per my cardiologists. I usually don't, because I need it at night more than any other time. Pharmacists tell me this particular form is okay to split along the score line, but not anywhere else nor can it be crushed.

Any form of cyanocobalamin made my deficiency symptoms much, much worse-intolerable. IM or intranasal was the worst. I tolerate 5,000mcg sublingual methylcobalamin just fine.

Interesting... I've been toying with a second opinion from an endocrinologist but I might also ask my hematologist to run that test. I'm certain my ANA wouldn't just start being positive every time for no reason at all. As you said, if it's not a big deal, why test? I know some people "just have a positive ANA" but when you used to be consistently negative....

I'd say about 10 times, maybe every 8 months on average, starting when I was a teen? We always thought it would come up positive and never did. The last 3 times it has been.

My ANA is 1:160 positive (I think speckled, or was if homozygous? Whichever one indicates lupus) and was never positive until this year... ESR/CRP are okay, rheumatoid factor normal, DNA test for lupus and mito normal, and so I'm told by my PCP and hematologist that it's not a big deal and I don't need follow up. I do have a lot of soreness, low temp, recurrent infections... I may push to see a rheumatologist but I doubt it'll get me anywhere.

I've taken these for many years. Some symptoms did improve, my numbness and tingling most importantly. I use both sublingually. I'm quite sure I have MTHFR mutation but haven't been tested.

Both of my cardiologists assured me that metoprolol, at least in small doses, isn't potent in lowering BP. Mine is very low to begin with and I haven't noticed a difference when I take it vs. when I don't. I use the 24 hour extended release version which doesn't last a full 24 hours for me. The different BBs have very different functions.. I am limited to specific ones so I don't have issues with my lungs.

I can only handle half of a beer now. I'm a huge craft beer person so it's very disappointing. I used to be able to try 3-4 and now I have to split just one with my husband, which means we have to agree on which one to drink. First world problem, but still. i have horrible effects from more alcohol than that, even though I was well acclimated before. Getting hot and sweaty, nausea, very fast pounding heart, general illness waking me from sleep... nothing ever helped with it. ANY wine even homemade sulfite free stuff causes this, too. It's so unpleasant that it's not worthwhile to drink wine or a whole beer. I can drink the non-alcoholic stuff, but it's awful. I had a 30 day Holter and it showed lots of PVCs and PACs including bigeminy (every other beat), and fast sinus rhythms... that's about it. Pre- and during cycle is a really bad time for me too. Pretty much everything gets worse. I think taking B6 that week has helped somewhat, but not enough.

We vary so much. I can't sleep without metoprolol before bed. My heart races and pounds too much to consider it. Showering when it's warm out (in winter it makes me too cold) and reading, definitely...

Mmmmm mineral rich, crunchy salt!

My neurologist in Boston just told me >15gm salt. I was surprised. I adore and crave salt, I'll even lap up plain old sea salt, but even I think that's a lot. I balance it with fluids, and I love to drink broth too, A liter of normal saline has 9gm in it! I guess I got enough the other day when I got 1500mL.

I'm sure I have MTHFR too. My levels are about 2000 and my hematologist is not concerned about it even though I haven't been tested for that mutation (he says it's so common it's not worth looking for-I don't know, but he didn't want to bother testing). I had exactly that scenario and take the methyl version of B12 and folate,

Thankfully, I have ONE doctor (out of about 10) who is willing to write my script for IV fluids at home. I've gotten the exact same "advice", lying on the floor hypotensive and being told to drink more. Believe me, if that helped, I'd be fine. It's like I'm asking for narcotics for goodness sakes. Most of my doctors say drinking does the same as IV fluids. They should try it when THEY are in shock. I was going to get an infusion the other night and started really crashing soon after starting it. We ran the first half liter as fast as it would go, then another liter, and it turned me right around. The next day, I felt better than I had in a long time. Otherwise I would have had days of not doing well. I don't know why there is a huge huge difference, for me, in receiving 1-1.5 liters of saline and drinking as much as 10 liters of electrolyte balanced solution, but it's very clear. I urinate most of what I drink but I don't when it's IV. I can't explain it, but it's dramatic and vital to me, as nothing helps as much. It isn't enjoyable or inexpensive... I wouldn't choose it if I didn't have to!

Mine is high from supplementing... the test doesn't differentiate between a cyanocobalamin tablet you took and your real B12 levels. Of course it could be a lot of things, but if you take B12 or lots of enriched food, it could just be that. The ranges are a little wonky too... are you over 2000?