Strange but helpful medicines

[shayden]

I am hoping you can all help me yet again. I am going to be going to my Doctor soon and I want to come prepared with some suggestions. I am looking for advice on what works best for you. Not the normal medications that I think most of us have taken at one point or another (i.e. Beta-Blockers, Anti-Depressants, Florinef, Midodrine) but the one's that no Doctor would typically think about. A post was recommended to me to read about Creatine by Lisa. This is great because it is something I would have never thought of and it may help.

Reading through the post, I am also noticing a lot of you are on Saline IV. I know that it helps me at the hospital but no one has ever suggested that I take it home with me. Can it really help on a daily basis?

Any other suggestions would be great!

Susan

[Jenn202]

Hi Susan - I have a Home infusion company set up for when I need IV saline. I get it when I am sick with a cold or flu since this seems to be when I am at my worst.... It always helps.

I have had some "episodes" as well without being ill when I got IV saline...

For me it makes a huge difference.

When I saw Dr Grubb last month he said it was common for people tp have IV saline.. It helps get your volume up when you cant do it yourself.

Hope this helps

[blackwolf]

don't forget vitamins and minerals, they are part of my daily pills i pop and if i miss even one day on most of them there can be consequences.

for me a daily vitamin with iron is taken with vitamin c with rosehips(500mgs daily good health), complex b vitamin 100(pain control and memory help), vitamin e (400ui supposed to help with detoxing the body, especially the muscles), and magnesium 1200-1600mgs(which helps as a stool softener and lowers my super-tachy episods). another thing i am working towards triing is omega 3 and 6 fatty acids. but i need to figure out how much i am already getting in my weekly diet.

best of luck

blackwolf

[ramakentesh]

things that have helped me considerably.

I didnt start improving until i started having a large bad breakfast of salty bacon and eggs - from the time i started this i improved.

secondly, omega 3 and fish

thirdly, valerian calms me down when im getting all trembly

and lastly licorice tea - its like florinef but without the sideeffects - although i gives me migraines

[calypso]

I also take fish oil for omega-3s, B-complex and a calcium/magnesium supplement (the last is particularly important if you're experiencing weight loss, because in the event that you are potentially losing any bone mass, this will protect you somewhat). I also take a high-quality multivitamin, and I feel I function better with all of these supplements. I seem to have less irregular beats and feel a little more rested.

I also tried amino acid supplements (L-carnitine & L-arginine) for four months but didn't really notice any difference. I wouldn't waste my money on these.

Amy

[EarthMother]

On my doctors approval, I take a powdered magnesium supplement (no calcium in it) called naturalcalm.net and DDAVP which has helped me more than florinef did.

Good luck on your healing journey.

EM

[POTSparent]

This is sort of along the lines of an alternative to the "to florinef or not to florinef" question. I noticed EarthMother, perhaps a couple of others here, take DDAVP. My daughter just started that about 5 weeks ago.

DDAVP is a very common medication normally given to adolescent bedwetters. It has the effect of helping one retain the fluids more easily. And that's part of what dealing with POTS is all about for those with blood volume issues. While certainly no Rx expert here, that's pretty much what florinef has always been said to help do. But there seem to be about as many people who talk about unwanted side effects from florinef as those here who say it helped. So is DDAVP perhaps a better alternative for those who didn't handle florinef well?

Doctor said it's normally given at night (obviously), but to take it in the morning instead. Put "once a day" on the Rx instead of "every morning" simply to avoid having to deal with a questioning pharmacist who would figure that the Rx was made out wrong.

Oddly enough, the main reason this prescription was written in the first place had nothing to do with fluids -- but rather a bleeding disorder somewhat common (or at a disproportionate rate) amongst POTS patients. This "bedwetters" medicine also possesses (for reasons I can't quite grasp) an effect that allows the blood platelets to stick together a bit better which is beneficial to preventing bleeding. And, of course, excessive bleeding is just something that POTS patients absolutely don't need if blood already low anyway.

But back to the florinef-alternative angle. You know how the docs push "fluids fluids fluids"? And the downside of that is the frequent need to go to the bathroom disrupting some of one's normal daytime activities? Well, by taking this DDAVP help-one-to-hold-it-at-night medicine in the mornings, my daughter has observed a lesser need to go running to the bathroom due to the fluid intake load as her day progresses.

Time will tell how well this works for her for her bleeding disorder, but I do find it initially interesting how it's working on the POTS side of things.

Any thoughts from those who have taken DDAVP longer?

POTSparent

[EarthMother]

I've taken ddavp for 18+ months ... tiny dose .1 mg daily, up to .2 during 'bad' times. I go off every now and then to see if it is still making a difference. And after a couple of weeks I'm back on. There is lots of reasearch with adult diabetics on ddavp longterm, with good results (i.e no dangers). My PCP & my cardio both check my blood levels to make sure my kidneys, liver etc. are fine.

I have been on flurinef for long periods of time in the past, but I can't say I noticed as much of a difference. Not loosing so much fluid frm urinating so frequently is what really helps me with the ddavp.

Good luck to your daughter finding something that works. Keeping in mind that everything changes and what works now may not work down the line and viseversa. Adaptation is key.

EM

[Michelle Sawicki]

I've been taking licorice root capsules. They help me retain water and, for the first time in 6 or so years, I am not thirsty all the time. I haven't noticed any side effects. I do take potassium and magnesium with the licorice root because it can deplete the body of them both.

Michelle

[lalalisa]

Susan,

I recently learned from others on this forum that many of us have low blood volume. I am currently being tested for this and if I do in fact have low blood volume Procrit can help in amazing ways according to others on this forum.

Another med that isn't typical is Provigil. It is normally prescribed for narcolepsy but has helped some on this forum with extreme fatigue.

Thanks for this post - I am always looking for new meds to try as this has been a 3 year battle so far for me.

Lisa

[taylortotmom]

Hi, as you have probably read in other posts I am on infusion therapy daily. It has made a tremendous difference in my life. By this, I mean ten hours of iv therapy a day will buy me a 3-4 hour period of feeling pretty good. So, my case is a little extreme (or as I say, atypical). However, I do think the use of hydration therapy (saline, et al) is highly under utilized. I never knew how dehydrated I stay until I started on this daily regime. I think many of us with dysautonomia have huge hydration issues. It makes a lot of sense based on our symptoms.

Carmen

[Sunfish]

some thoughts re: the original question & the following posts...

i'm guessing you've already looked at this, but just in case you haven't, there's a good amount of info on the "what helps" part of POTSPlace. the link is: http://www.dinet.org/what_helps.htm

some of the more "alternative" ideas are listed too, in addition to the "standards".

i too do well on IVs but have not yet had them at home. seeing how tough it is for me to get to the urgent care place when i need them most i'm thinking of asking about how to get it set up with a home care place once i move...not for always, but prn...i hadn't realized this was an option...

re: vitamin supplements, etc....i know they help many, but with my GI problems (motility/gastropareses) being so bad at times i simply cannot tolerate a lot of additional pills. in essence my doc & i agreed that it was better for me to scratch a few things that weren't absolutely necessary to day-to-day survival than it was to be throwing up even more than i already was...a lot of vitamins, etc are also only absorbed well with at least adequate food intake so this is worth keeping in mind too...

re: DDAVP, i have only been on it for about a month & it seems to be helping me in the mornings. also, FYI, it was/is originally a med for diabetes insipedis; the usage for incontinance/bedwetting/urgency came as secondary. that said, i'm not taking it for any of those reasons but b/c it keeps more fluids in my body overnight. i used to take florinef with some benefit but it wrecked such havoc on my potassium that it was counterproductive (i couldn't tolerate various varieties of potassium supplements). but back to the DDAVP, i was put on it at vanderbilt when we discovered that my fluid/urine output in the morning was always 1200cc or more; i suppose for a "normal" person this would translate to lots of overnight awakenings to use the bathroom, but my bladder nerves aren't too snappy so it doesn't wake me up...good sort of but not the best on my bladder. i have always felt REALLY dehydrated in the mornings, but until my bladder got moody this past year there was never any attention paid to my output. b/c of measuring how much i go on my own & how much i have to cath myself, some other things have become apparant....regardless i'm planning on sticking with the DDAVP as it seems to be helping some...

another thing that has made a big difference for me is birth control on a more continuous basis. i now get a period every 3-4 months & when i do get it my BP crashes aren't as bad in the days prior. i tried to wean off of it once when i was doing pretty well a year and a half ago or so, but no luck...i definitely do much better with it...

there's also the cortisol-defficiency issue that myself & a few others on the forum have found out is a piece of the puzzle for us...

there are other little "day to day" things that i know my body depends on either daily or as needed, but i think most have been discussed on here...compression hose, loads of salt, gatorade, nutritional supplement drinks, etc...

and for me and many others a combo of two or more different meds in very small doses seems to do better for us than one thing at a higher dose...

sorry if i've just reiterated what you already know!

good luck!

:-)melissa