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poslisa

What meds do you take?

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I was wondering if you could tell me what meds you are currently on for treatment of POTS and if they are helping you. I had been taking Midodrine 5 mg twice a day without any relief of my symptoms, my heartrate was consistently in the 120's - 130's. We increased my Midodrine to 7.5 mg twice a day this week and found my heartrate to be in the 140's yesterday, so we added Florinef 0.1 mg twice a day. I'm afraid I'm not going to be able to continue the Florinef because I started retaining fluid today and I was told that I can't take a diuretic with it. I wanted to take a beta blocker such as Toprol with the Midodrine but was told that I shouldn't take a beta blocker with the Midodrine. Please let me know what you are taking and if you ever took Midodrine and Florinef and how you reacted to them. Thanks.

Lisa T.

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I am currently taking Sectral (beta-blocker) 200 mg daily for my heart rate, as well as Florinef once daily (.05) to help me retain water and sodium. I have noticed an improvement in my heart rate and shortness of breath, but I am still having a lot of lightheadedness and exhaustion on a daily basis. When I was first diagnosed, I was taking Sectral 400 mg daily, Florinef 0.2 daily, and Midodrine (2 tablets every 3-4 hours). This combination seemed to help a lot, but then I became pregnant and had to stop some of the meds, so I wasn't on them long enough to really tell what helped the most. At this point, I think starting back on the Pro-Amatine might help considerably, but I am trying to get by on as little medicaton as possible.

I have never heard that you shouldn't take Midodrine with beta blockers, I wonder why that is. Because one lowers blood pressure, and one raises it, so it seems like they would balance out. THat's a good point I may bring up with my cardiologist.

Good luck finding a good combination of meds, it can be a long process sometimes.

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Hi Lisa,

I take 12.5 mg Toprol (beta blocker). I have tried Florinef. Unfortunately it actually increased my symptoms. I have tried Midodrine as well and didn't find it to be especially helpful. It made me very tired. Some people find Florinef and/or Midodrine to work great, but I wasn't one of those people.

I did take Midodrine and Toprol together. Midodrine constricts blood vessels while Toprol relaxes them, so that is probably why your doctor did not want to prescribe Toprol with Midodrine.

Hopefully you'll find something that works well soon.

Michelle

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I take 20 mg of Celexa as per Dr. Grubb. He believes that SSRI's, which affect the central nervous system, can have a mediating effect on the autonomic nervous system. Since starting Celexa almost 2 years ago, I've had significant improvement in my GI symptoms--fewer bouts of spasms and pain, and when I do have symtpoms, they are less intense.

I'm not currently taking any other meds specific to dysautonomia--but I'm on a snootful of stuff :D for allergies, asthma and reflux--flonase, zyrtec, advair, singulair, benedryl, and nexium-all taken daily or twice a day.

Nina

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I take 12.5 mg Toprol twice a day and .5 mg lorazepam every 6-7 hours (about 2 mg/day) and of course salt and water. I tried Proamatine and it actually increased my hr. Florinef gave me headaches. I did try a course of Celexa and I didn't notice a difference one way or another so I stopped. I may try it again for longer term. Or possibly Paxil, I just saw something on Paxil and how it helps post traumatic stress disorder and actually increased the size of the hippocampus (sp?)

so I'm going to ask my doc what he thinks about going that route since Celexa didn't seem to make a difference.

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i used to take setraline (25 mg?) which is an ssri and i took ranitidine for reflux and other GI symptoms. i was then switched to celexa (i now take 20 mg, i started at 5 since i seem to have developed a wicked sensitivity to many drugs) and am on that and atenolol (25mg). i find them both to be effective with palps and tachycardia, and sleep (in the case of celexa).

but that's just what the specialists put me on. my GP has prescribed a load of supplements and para-biotic type substances (he's a naturopathic MD) since he's convinced they will help me...i dunno, i've found them to be hit and miss with the POTS stuff. the only thing that really helps out of that bunch (specifically with all the GI problems) is acidophilus (a natural bacterial culture which aids in digestion and in keeping candida under control).

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:o oops! I forgot to say that I also take ambien nightly to help me fall asleep and stay on a regular sleep schedule. I find that if I don't keep to a good sleep routine, the rest of my health goes haywire.

Justin, I also have terrible medication allergies which developed over the past several years--however, these were well underway before I started Celexa. I wear my medic alert bracelet because I now have allergies to nearly every antibiotic made (only tetracylince/doxycyline doesn't give me hives and respiratory problems). I have heard that there is a new antibiotic on the market, but at present, the price is in the hundreds for one series. Everytime I get a sinus infection, I keep my fingers and toes crossed that the doxy kicks it out of me...otherwise I'm seriously S.O.L. :D

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Hi everyone.... I take 75mg of Toprol and 25mg CR of Paxil. I find that these help me to stay balanced somewhat. Even with Toprol I still have PAC's on a daily basis. I also take half of a .05mg of Klonopin at night to relax my mind and body so I can sleep better. I also load up on vitamins daily..

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Baclofen - 15mg three times a day (Total 45 mg) - Neck/throat spasms

Synthroid - 137 mcg - Thyroidectomy in 1996

Lorazepam - Too much :D

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I had a question for Justin- I found it interesting that you mentioned taking acidopholus for your GI problems. I take it every day anyhow for all the yeast issues I've had in the past, it helps to keep that under control as well. I was just wondering how much do you take daily (how many capsules, and what brand have you found most useful?).

Also, to Nina, I was wondering what type of medication is Celexa, and what does it theoretically do for your POTS symptoms? Any side effects?

My current meds are not helping me as much as I would like, so I'm curious to see what some other options might be. Thanks!!

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hey jessica

i take a powdered form of acidophilus instead of the capsules. about 2 billion colonies (which is 1/4 of a teaspoon of the one i take) although i have taken up to 8 billion in the past. 2 billion is a maintenance dose. 8 billion is a short-term dose for when you need to replace the lost bacteria (say, after taking a round of anti-biotics or as part of a candida cleanse). the brands that i have found to be most effective are DDS and Probion. DDS was the best out there for a long time, but it is still one of the ones that isn't heat stable, so it must be refrigerated. and it's also the most expensive.

it's best to have the majority of the culture as lactobacillus strain, and maybe some bifidus thrown in. also, most brands now add FOS (fructooligosacharrides) which act synergistically with the acidophilus to increase the amount you assimilate and the benefit you get from it....

and that's about all i know in terms of dosage and brands.

hope it helps...

justin

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Just a note on the acidophilus. I have used it in the past following a period of antibiotic use, and find the Kirkman products to be 'Dysautonomia Friendly' in that they don't contain any sugar, wheat, gluten, soy, artificial flavors or colors. I still use their Vitamin C product and I know there are many others. I am still on a feeding tube and the more stomach trouble I can avoid, the better!

On a peculiar note, I have noticed their web site has been down for a few days - www.KirkmanLabs.com. So who knows, maybe they have been shut down for false labelling :D ! Don't know if the DDS or Probion products are similar...

-Dan

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Hi Everyone!

I'm just taking proamatine, everything ealse just makes me worse, or i have side effects on them. It seems to be helping, but I still have alot of bad days. I was on florinef but it just made my symptoms worse.

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