sudafed/phenylephrine for OI/POTS anyone??

heapsreal

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Phenylephrine is a selective ?1-adrenergic receptor agonist used primarily as a decongestant, as an agent to dilate the pupil, and to increase blood pressure. Phenylephrine has recently been marketed as a substitute for pseudoephedrine (e.g.,Sudafed (Original Formulation)),
http://en.wikipedia.org/wiki/Phenylephrine

I wonder if anyone has used this and it has helped. I have used this on a number of occassions when brain fog wont budge, but thought it was its stimulant effects helping but maybe more to do with increasing BP. I havent been officially diagnosed with OI but when brain fog is bad i struggle with worsening fog and fatigue when sitting and standing etc and i find lying down for 10-15mins helps and then i can go back to what i was doing for abit longer, i have also had bouts of sweat attacks also and wondering if it may just be OI?? After watching the utube in another post on pots/oi, im thinking its alot more common in cfs then most of us realise. The video did say if u normally have good or high blood pressure that this can be abit of a safety effect when someone has OI, where someone who normally has low BP will often collapse/more dizzy spells and struggle alot more then most.

Also seems that low cortisol can play a part as well, i wonder if this is why pregnenolone has also helped me with brain fog as it can help increase cortisol levels thus BP. This is something that i havent really looked into but maybe why i still have bouts of brain fog/fatigue and adrenal fatigue still present shown in blood tests. Watching the utube on pots/oi was a light bulb moment for me, although it has been looking me in the face for years. Also maybe why tramadol helps me with brain fog as it can help maintain and or raise BP too.

cheers!!
 

LBS

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Oh, this is interesting. For many years I practically lived on Sudafed (pseudoephedrine) because it seemed like the only thing I could take that would lessen my symptoms well enough to give me enough clarity and energy to get through the days. I discovered this quite by accident, as one of my early theories about my fatigue was that it was related to some sort of allergy, so I tried an allergy medicine that happened to also contain a decongestant. When I felt better, and then realized I'd been taking two drugs, I decided to just try the antihistamine alone and I felt worse again, so determied it was actually the decongestant that had helped.

I try not to take it these days because, after so many years, I worry about the long term damage it might do, but always have some on hand for those days when I just can't get through without some help. Like you, I've always thought it was just the stimulant properties that were helping me.

ETA: Going back I see you are talking about the "new" Sudafed, which I have only taken a few times. I can't speak to that, but do know that the pseudoephedrine has both stimulant and blood pressure elevating properties, as well. And yes, my BP has always been quite low.
 

heapsreal

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I found psuedoephedrine very strong and affected my sleep but the newer version helped brain fog but doesnt hype me up to much which is what i want. The newer stuff doesnt help runny nose as well though.

After reading about OI yesterday and my little brain hurting i popped the newer sudafed version and it helped alot and didnt cause me too much drama trying to sleep, so will keep it up my sleeve.

cheers!!!
 

LBS

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Yes, I could never take it after a certain point in the day, I have a hard enough time sleeping, anyway. I will have to give this new version another try. If it helps but is more gentle, that would be a good thing. Thanks!
 

RustyJ

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I use cold and flu tabs for the same reason though the new formula without pseudo is not as effective, but still good. I often take the day time ones at night. They actually help me to sleep, which is a bit bizarre.
 

heapsreal

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Thats interesting rusty because alot of the time brain fog/OI? worsens my sleep as well and last night taking a new sudafed version in the late afternoon helped the brain fog/OI and took my usual sleep meds and slept quite well, woke up feeling ok too. 4pm today i had that same yuk feeling and took another sudafed and its working fine plus i dont feel overstimulated. Someone i was chatting to on the forum mentioned how sudafed helped them but eventually stopped working for them but after a break starts to help again so they use it for special occassions or when symptoms are bad and hard to tolerate, so maybe use in a cyclic fashion. I think that pregnenolone i use is helping me through improving OI as well, so maybe i can have a few things up my sleeve that i can use. it doesnt sound good but its like being on uppers and downers but im not chasing a high just trying to function. I think as i improve my adrenal hormones hopefully these symptoms improve as adrenal hormones also regulate blood pressure and fluid regulation.

cheers!!
 

LaurelW

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It's interesting that you should bring this up now. A week ago, I had a horrible cold--couldn't breathe through my nose, bad sinus headache. I finally went to the store and got some of the new Sudafed so I could at least lay down and get some rest. It worked pretty well for that, but it kept me awake until 2 a.m. (took it at 3 p.m.), even with more than normal sleep meds. The strangest thing was it gave me this feeling of well-being I haven't felt for a long time. It didn't occur to me that it was making my OI better until it was mentioned here. But now I'm afraid to take it again because insomnia always makes me much worse the next day. Maybe if I took it first thing in the morning?
 

LBS

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I think I'll start adding it to my regular routine again. I used to take the old Sudafed in the morning in order to get out of bed and get to work, but by the grace of the powers that be I've been a bit less impaired than that over the past two years (usually). I would maybe take one more dose in the very early afternoon in order to get through the rest of the day, but that was it, due to insomnia. Half the time I still couldn't sleep at night, but I have that problem no matter what I do, the Sudafed just made it a bit worse. Maybe this newer drug will be more gentle for me in that respect.
 

heapsreal

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It's interesting that you should bring this up now. A week ago, I had a horrible cold--couldn't breathe through my nose, bad sinus headache. I finally went to the store and got some of the new Sudafed so I could at least lay down and get some rest. It worked pretty well for that, but it kept me awake until 2 a.m. (took it at 3 p.m.), even with more than normal sleep meds. The strangest thing was it gave me this feeling of well-being I haven't felt for a long time. It didn't occur to me that it was making my OI better until it was mentioned here. But now I'm afraid to take it again because insomnia always makes me much worse the next day. Maybe if I took it first thing in the morning?
Maybe try it in the morning, the new version we use is phenylephrine. Im sure there are more things like this around that dont require prescriptions, im going to try and hunt around for some ideas.

cheeers!!!
 

SaraM

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Heaps, the best thing that helps me with brain fog and OI is Excedrin which contains a small amount of caffeine. I have also tried Caffeine pills with good results, just once, but I need to try it for a few more days. I did not notice any improvement while taking Sudafed. Need to try it again,though. Coffee does nothing for me, but drinking Pepsi or Coke gives me lots of energy and keeps me awake all night.
 

Sing

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I've never tried a decongestant like this but want to because I have lots of difficulty with OI. I bought a blood pressure cuff last winter to check my BP and it is very useful to collect data for the doctor. It was
also useful for me to see just how bad it is. If I stand still for 10 mins in the am, it will go down into the 50s before I must sit/lie down. I feel the struggle, my vision is graying and coordination is failing and mind doesn't work. I forced myself to stand for 10 mins just to show the doctor. Normally, when I get up, I can be upright for a couple of mins, then experience these symptoms and have to lie down for several. Then I get up again for a couple, lie down for more, then get up for a couple, lie down... I am looking to find something to increase BP other than Midodrine, which makes me very cold. The other medication, Fludrocortisone, increases water retention and causes me serious depression if I take what might be a clinically effective dose. Couldn't stand it long enough to find out. Instant Clinical Depression! Dr. Peter Rowe noted that it has this effect for some people. Neither of these drugs is ideal or really fixes the problem. Yeah, I know about compression stockings and use them. These help a little bit more, but I still struggle.

I even think that having so much trouble with OI could be hurting my heart and causing some brain damage--I am talking about all those times I am forcing myself to stand and walk when it is a big struggle.

Sing
 
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Heaps, yes yes yes. For some reason it works. before I knew what was wrong with me I would constantly get sinus infections and colds and ate decongestants like candy. They really did help. I also would crash severly 3-4 hours after taking a dose.
 

SOC

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Years ago, long before I was diagnosed with ME, I started having BP-crash episodes. My doc thought I was hyper-reacting to vasodilators like some cleaning chemicals, camphor and such. It was murder to walk up on someone with a Vick's cough drop, or who had been using Vicks VapoRub. My excellent doc recommended that when I had such an encounter, I immediately take a double dose of Sudafed and, of course, get away from the nasty if I could identify it.

Without the Sudafed, I not only had the nasty immediate nearly passing out effect, but I felt lousy for days afterward. With it, I had time to get away from the offending substance and the symptoms cleared up within an hour or so. So I'm a big fan of the vasoconstricting effects of Sudafed and it's benefits for low BP. :) I carried Sudafed in my handiest pocket for years.

I assume it could work similarly for low BP and some OI problems.
 

heapsreal

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Someone mentioned potential problems with taking Sudafed regularly long term? Anyone know more about this?
Long term would have to be careful of adrenal fatigue but i think this was mainly from the older formulations which were more stimulating, there could be something else though. I think if it helps it would be good to use for occassional use.
 

heapsreal

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Someone mentioned potential problems with taking Sudafed regularly long term? Anyone know more about this?
Long term would have to be careful of adrenal fatigue but i think this was mainly from the older formulations which were more stimulating, there could be something else though. I think if it helps it would be good to use for occassional use.
 

Sing

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I just read the first post here again and checked out the Wikipedia article. It explains about the two different formulations very well. I am trying out the newer version, which is NOT a stimulant like pseudoephedrine is, the original Sudafed. The one recommended pill seems to help a little but not much. It doesn't cause me side effects. Am going to experiment with taking two pills instead of one, and see if that helps raise my blood pressure more. Am really motivated to stop the Midodrine for the winter, at least, as it makes me so cold--
 

heapsreal

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I just read the first post here again and checked out the Wikipedia article. It explains about the two different formulations very well. I am trying out the newer version, which is NOT a stimulant like pseudoephedrine is, the original Sudafed. The one recommended pill seems to help a little but not much. It doesn't cause me side effects. Am going to experiment with taking two pills instead of one, and see if that helps raise my blood pressure more. Am really motivated to stop the Midodrine for the winter, at least, as it makes me so cold--
Thats interesting sing, let us know how you go. I find the newer version less stimulating, its suppose to have alot less effects on beta receptors which control heart rate and contractility and mostly on alpha 1 recptors which cause vasoconstriction.
Another drug commonly used that could help with hyperadrenergic POTS is tizanadine, it is an alpha 2 agonist which helps blood vessels relax and can help lower BP, so would be useful for the hypertensive POTS people. Most people use this med for muscle pain as it is a muscle relaxer and some use it for sleep as well.
Maybe we should make a list of treatments and references of info for both hypotensive POTS and hyperadrenergic POTS(hypertensive), both seem to cause increased HR, the main difference seems to be the blood pressure and both seem to interrupt cerebral circulation.
 

Ocean

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Does the new version actually help with nasal congestion?

I take Sudafed, the kind you have to get at the pharmacy behind the counter in the U.S., because one of my CFS symptoms is severe nasal congestion, and I can't sleep or function when I can't breathe through my nose. I just panic. I also get very mucusy. But I noticed a side effect was that it did in fact help my POTS symptoms. I wonder if the new version would help with POTS or nasal congestion.

Recently I've had bladder issues, never feeling like I am able to void completely and constantly feeling like I have to go. When I stopped the Sudafed it greatly improved. Has anyone else experienced this?