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Birdlady

Pseudoephedrine Helps Me

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Dana have you thought about the long acting 12 hour sudafed? I was wondering whether it would be a less up and down thing? its basically 120 mg that comes out slowly for 12 hours.

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I have not thought about the longer acting one. I'll have to see. In the US I Have to sign my life away when I buy PE. They take your ID number and everything.

I finally got rid of this sinus infection with a zpack, so I am ecstatic right now....lol I'll have to see how I do on PE when I don't have massive amounts of congestion in my nose. I wonder if it will make me feel any different.

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I had to take the PE every am when my BP was so low even with my iv before I got out of bed in the morning to bring up my BP.

The PE worked but soon had a rebound effect and my sinuses were soon in trouble and I had to stop. The PE also made my anxiety terrible. So, I tried to avoid the PE as much as possible. Recently, my BP has been dropping and I would have to take it. I also been having a lot of eye pain. I have stopped the PE. I have a retinal hole/cyst ? Macular ? In one eye. The pains have become so bad this past week. : ( I hope we all get better soon!

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Dana - i have been experiementing with taking a 1/4 tablet on rise, a second dose at 10.00am and a third 1/4 at 3pm. Ill let you know how I go.

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I posted this topic years ago about how Pseudoephedrine helped me feel pretty much normal again. I found this out quite by chance when I took it for a sinus problem. I ended up experiementing wih taking half a tablet very early morning and even that small amount did the trick for me. At the time though I didn't have issues with tachycardia so not sure how I would respond to it now. I have both swings between Brady and Tachy. Perhaps I should ask my Doc if I can try using it again to see if it helps. Some specialists do use it for POTS.

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Tanzanite (i love that name! My husband and I both were salespeople at jewelry stores in another life, so I have an appreciation for gems!)

Maybe I missed that post or I wasn't around here yet. :) I haven't taken any PE for a week if not longer, but my sinus issues are coming back, so perhaps I will. I took a beta blocker earlier today, so it seems so counter intuitive to then take PE on top of this, but then again taking PE seems odd in the first place. haha!

Rama,

How did your latest trial go?

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Well after playing with pseudoephedrine I decided that it works best for me the following way:

I take 1 full tablet at about 11am and it kicks in when im usually dizziest and with a cup of tea in the afternoon it works wonders really. I now get no side effects from PE other than really clear nostrils/sinuses. This med really works for my POTS.

But the down side is that the second day it works less and third day less again. I have to basically either increase my dose after the third day for effects or have to give it a break for 1-2 days to get it to work properly again.

On these off PE days ive been experimenting (with doc advice) with either DHE or the new sudafed (phenylephrine) but both arent as good as pseudo.

I am still processing theories about why this works so much better for me than midodrine.

Ive got quite a few positive reports from others who have tried it. And there is a facebook page where many also report that pseudoephedrine helps their POTS or NMH/OI. One girl says that while she can take butchers broom and PE she cant handle midodrine as well. Actually a lot of the successful people with PE say that midodrine wasnt helpful. Interesting.

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I tried it too. Short term it seemed to help. Only issues I had was on day three started having some heart pains. I also believe that I got dehydrated with it. (That may have been what caused the heart pains.)

I found on day one that it was like a near miracle. I didn't even qualify to have POTS. But, it worked less on day two and on day three - didn't work and had the heart pains. Stopped at that point. I think for me --it would be a very short term thing to use. If I especially need a good day for a special event or something.

Instead of it increasing my hr - that normalized out and hardly had any tachy and could stand for a good long time without issues.

Like Rama, not sure why this worked ---yet for short term. With me having high NE levels you'd think it would ramp up the system and cause higher bp and hr.

Issie

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I forgot to add that I also felt that it triggered a bit of an allergy with me. Not full blown MCAS attack - but, a touch of that feeling of needing some allergy meds.

Issie

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I have used pseudoephedrine HCL for 4-6 weeks now. It has helped my symptoms as well. I can't take it every day because of tolerance and insomnia issues. The 12 hour does not work as well as the original formula for me, and causes worsening insomnia issues. I take a normal dose for congestion, every other day.

I find that it helps tremendously for the orthostatic grey-outs, fatigue and brain-fog and does not spike my HR or BP.

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"I take a normal dose for congestion, every other day:"

That's probably what I was doing too. Very interesting!! Thanks for reporting back. I haven't taken it for a while especially now with the summer heat, I worry it will make my heat intolerance worse.

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Yeah I agree with fire watcher and note a reduction in hr when standing as well massive improvements in dizziness/lightheadedness, weakness and fatigue.

it works better than midodrine for me by miles.

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Unbelievable! Thanks for the bump, ramakentesh. I came on the forum specifically to search for Sudafed just now and found this.

I have been struggling with some sort of sinus problem for the last few days (I get this every year since I was a child) and broke down and took some full doses of the Pseudoephedrine kind. I used to avoid this drug or take only half doses because it used to make me very jittery and cause my heart to race. But that was before I developed these autonomic dysfunction symptoms...

I have felt much more like my 'old self' yesterday and today and I couldn't figure out why, especially since I have barely slept the last 2 nights. So I started to wonder about the Sudafed and if it was helping with blood flow and blood pressure.

I really like how I feel, but I am worried that it could be damaging and also that it is affecting my appetite, which is a major concern for me.

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I am going to try Butchers Broom and Pseudoephedrine (Not together). Earlier on, I would have thought either would have made me more symptomatic. Now, I am guessing that it could do the opposite.

I did mention this to the doctor, and he feels it would not harm me to try. I will start small and slow. If I do not like either, I will throw it away.

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