Birdlady Posted March 8, 2013 Report Share Posted March 8, 2013 I have taken pseudoephedrine twice now. I've been having terrible sinus problems, so that was the main purpose of me taking it. However I have to tell you, it does something else for me and actually makes me feel almost normal for a few hours.Last night when I took my vitals standing it was 106/75, 86 heart rate... I guess it's vasoconstricting something in my body. I don't tend to have blood pooling in my feet, so maybe it's somewhere else? I know most people on here avoid this med because it makes their heart race. I don't have that issue at all. I took my vitals a bit later and my HR was 105 standing, which for many of you might not seem like a bit deal, but that's huge for me. I see 165+ on a regular basis.I'm starting to think that I self-medicated for most of my teenage years with ephedra. It's all starting to make sense to me now. My POTS was not that bad back then. I still had heat intolerance, but the actual heart rate issues were relatively in check...or at least I didn't seem to notice them much.So I just wanted to share this you all. I don't recommend anyone try this unless you ask your doctor.A nice perk to all of this, is my mind is super sharp while this is active in my body. Just in the past 2-3 years my ability to write has gone down drastically, which has affected my ability to work even from home. Quote Link to comment Share on other sites More sharing options...
roxie Posted March 8, 2013 Report Share Posted March 8, 2013 I believe you! My dr had me try that years ago. It has a vasoconstrictor in it. At least it did before they changed the formula. Maybe it still has some type of vasoconstrictor in it that works for you?! Quote Link to comment Share on other sites More sharing options...
Birdlady Posted March 8, 2013 Author Report Share Posted March 8, 2013 It was really amazing!! The first time I took it, I thought maybe I was making it up....haha But I took it again and something definitely feels right. Too bad I don't feel comfortable taking it on a long term basis. The sudafed I have is really old, so I'm not sure if that matters. It expired in 2011...lol Quote Link to comment Share on other sites More sharing options...
Angela Posted March 8, 2013 Report Share Posted March 8, 2013 i used to take ephedrine too, like over 11 years ago because I am so weight conscious and it gave me energy. but it also gave me tachycardia like crazy and other weird symptoms. Yeah, I love the energy it gives since you are not hungry, you are not eating so you need energy from somewhere, but overall I kinda knew what I was going thru wasnt good for my health. I am 5'9" and weighed 110. yeah, its nice to be size zero but sometimes I wonder what the **** that did to my body in whole. it did make me super energized, in a jittery bad kinda way. but maybe in small doses it may have some value as far as brain cog?my sis is on aderol which i've read is like basically legal meth, the dr.'s in indiana are pushing it on several people I know who don't have pots but other issues. I believe drug co's promote things to dr's and they get some kinda perk for convincing patients to try it. I took aderol once and started hallucinating basically it was horrible. I hate aderol as it pushed my sis into drinking way too much (i think there was other influences too but no proof) but she ended up loosing her kids for awhile. furthers my hatred for that "med". it is supposed to treat A.D.D. and I think some pots people take it so please do not be offended....just hate what it did for my sister and my experience with it wasn't happy (that was prepots), as well as another friend from Indiana who is very intelligent, masters degree but no pots, (i think crazy allergy issues tho) but her dr. was basically pushing it on her (she'd been rx'd and taking it for a while ) and she kept saying no. She is doing so much better now...just moved to florida and her flushing/allergies have gone away. and she has been off aderol for a year, she says. Quote Link to comment Share on other sites More sharing options...
Birdlady Posted March 8, 2013 Author Report Share Posted March 8, 2013 I'm sorry about your sister Angela! Doctors are really quick to throw meds at people. I was offered Adderall by one of my POTS doctors and I refused it. You are right it is basically a legal form of meth! scary!! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 8, 2013 Report Share Posted March 8, 2013 I think Meth is super strong to the point where it permanently deranges dopamine receptors and transporter action. scary stuff.Adderal and provigil I believe are amphetamine analogues, although the later has more action on dopamine and norepinephrine transporter function. This could be bad for some POTSies but other with extreme fatigue and particular NMH seem to tolerate these meds well. Quote Link to comment Share on other sites More sharing options...
Zap Posted March 8, 2013 Report Share Posted March 8, 2013 The "old" Sudafed (pseudoephedrine) is still available behind the counter if you sign in a log book. This was done to deter people from buying large quantities, as it was being using it to make methamphetamine. The newer phenylephrine is considered by many doctors and pharmacists to be pretty much useless as a replacement for the original. However, just recently a company has come up with a pseudoephedrine that cannot be used as a base for meth, so I would expect the phenylephrine will eventually be phased out due to this discovery and the fact that it never was a good replacement for the original.At any rate, pseudoephedrine has warnings not to be used by those with hypertension - due to its vasoconstrictive effects. I would surmise that the cause of some racing heart rates is due to the fact that the body is trying to compensate for excessive vasodilation and/or low blood volume. Correcting this results in stabilization of the heart rate. Hence stimulants (including caffeine) actually having calming effects on some of us, because they bring us back into the normal realm instead of pushing things into hypertension and over-stimulation. This would possibly indicate a lack of sympathetic activity.I've found lately that drinking tea can sometimes pull me out of a bad rut - but as I'm also a fast metabolizer of caffeine the effects wear off quickly, and it doesn't always do enough.Keep in mind that amphetamines were used as some of the original antidepressants (opioids prior to that) - which resulted in tons of people that had long standing addiction problems. Pretty scary thinking about it. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 8, 2013 Report Share Posted March 8, 2013 Hence stimulants (including caffeine) actually having calming effects on some of us, because they bring us back into the normal realm instead of pushing things into hypertension and over-stimulation. This would possibly indicate a lack of sympathetic activity.I've found lately that drinking tea can sometimes pull me out of a bad rut - but as I'm also a fast metabolizer of caffeine the effects wear off quickly, and it doesn't always do enough.Keep in mind that amphetamines were used as some of the original antidepressants (opioids prior to that) - which resulted in tons of people that had long standing addiction problems. Pretty scary thinking about it.In all of the three main mechanisms suggested for POTS there appears to be some form of sympathetic disregulation of blood flow and vasoconstriction:1. small fibre neuropathy or neuropathic POTS either in the legs or stomach is obviously associated with what is believed to be impaired sympathetically mediated vasoconstriction in these locations2. In the model of NET deficiency caused by giving healthy subjects a complete NET inhibitor the result was impaired baroreflex sensitivity, reduced stroke volume and blunted orthostatic vasoconstriction - in other words while it increases transduction in the hands, feet and heart, it may reduce outflow to the vasculature of the pelvis/stomach/thorax and head because of NE effects on cerebral alpha 2 receptors.3. In some reviews of high ang II POTS there is proposed a defect in angiotensin II receptor vasoconstriction with perhaps sympathetic elevation to attempt to compensate.4. In the autoimmune gangliopathy the sympathetic system kicks in to try to compensate for acetylcholine nicotonic receptor malfunctioning.Cocaine and laudenum were common prescribed once. Quote Link to comment Share on other sites More sharing options...
Birdlady Posted March 8, 2013 Author Report Share Posted March 8, 2013 Rama,I have heard some have the opposite effect with adderall and pseudoephedrine. I have no idea what that means...hah! I can't really say that it made me feel that much more energized. If I had to compare it, I'd say nothing more than a cup of coffee might do for me.I'd imagine doing well on ephedrine pretty much rules out any sort of NET deficiency right?I was really puzzled about the whole thing because I don't really have the typical low BP/low blood volume/chronically dehydrated/salt loading type of POTS. I never ever faint and my BP was steady and even went up some during my TTTs. It only got a bit low towards the end of the 45 minutes. My 10 minute NE levels are 613. I have no idea...I was hoping to find at least one other person who did well on pseudoephedrine. haha Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 8, 2013 Report Share Posted March 8, 2013 Did u do well on midodrine? Quote Link to comment Share on other sites More sharing options...
Birdlady Posted March 8, 2013 Author Report Share Posted March 8, 2013 No it was terrible. It actually made me feel extremely anxious and paranoid... Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 8, 2013 Report Share Posted March 8, 2013 I had a similar experience with midodrine among other side effects which were puzzling. its good to hear you've had some success. Thanks for sharing. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted March 8, 2013 Report Share Posted March 8, 2013 I tried Equate Sinus headache with 5 mg phenylephrine and 325 mg Tylenol a few times last year and noticed a small improvement in my OI. I got a kidney stone, unrelated and had to stop. I bought this pkg because I wanted the smallest dose of phenylephrine I could find in case I didn't react well. I read that phenylephrine works the same as pseudophredrine but it just wasn't as strong. It did unstuff my chronically stuffed sinuses and of course the tylenol reduced my pain. I'll try pseudophredrine today and let you know how that goes. I read that pseudophredrine was specifically targeted for nasal passages but I don't know why they said that. tc ... dETA. RATS. I took it but had to race up and down the stairs a couple of times right afterwards and that got my hr up too high. Hopefully, it will come down enough before this med kicks in ...ETA again .. I don't know if it's related but my bp and hr remained in my normal range for an hour after taking this and I took a nap ... Quote Link to comment Share on other sites More sharing options...
Birdlady Posted March 8, 2013 Author Report Share Posted March 8, 2013 Personally for me Phenylephrine doesn't do anything at all. It doesn't even help my sinuses! If you take the nasal spray form it works, but not in the pills.Found this in google too...I'm not alone apparently.http://news.ufl.edu/2006/07/19/decongensant/Unfortunately though I really don't feel comfortable taking pseudoephedrine on a daily basis, so it's just another one of those weird things I have found... Quote Link to comment Share on other sites More sharing options...
issie Posted March 8, 2013 Report Share Posted March 8, 2013 I used to take sudafed as a kid. I thought it helped me back then. I was never one to take Benadryl --cause even today it causes me to be nervous and now will cause tremors. I haven't tried sudafed in a long time.Great that it is helping you Dana!!!!Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 19, 2013 Report Share Posted March 19, 2013 I spoke to my POTS doctor about this today and he said he'd have no problem at all with me taking it daily as needed. So I am going to try this medication on advice from my doctor.In terms of etiology - well psuedoephedrine supposedly releases norepinephrine presynaptically and then it travels to alpha receptors and activates vasoconstriction that way - so its quite different to midodrine. It might have mild CNS stimulation properties similar to caffeine as well.You might wonder whether it would help neuropathic POTS the most but if the synapse has been damaged you wouldnt think there would be much NE to release? No idea... Perhaps it might also help in NET deficiency as there is reportedly blunted postural vasoconstriction in this.Im no longer super tachycardiac and can tolerate caffeine much better. So i will see how I go on a low dose next bad day. Quote Link to comment Share on other sites More sharing options...
Birdlady Posted March 19, 2013 Author Report Share Posted March 19, 2013 Rama, let us know how you feel on it. I looked around online and I found a segment of people with social anxiety, ADD, ADHD and other similar health issues take PE for a sinus infection and then realize how immensely better they felt on it...It took them a while to realize what had changed to cause it, so it doesn't seem to just be placebo. Some people posted on those threads and thought those who felt better on it were crazy because it makes them feel out of their minds, wired, rapid heart rate and other terrible symptoms, so it's not for everyone.I have taken it a few more times and I definitely feel better while on it. My heart rate isn't perfect, but it feels like my body is working more properly when I stand. I still have heat intolerance so that's hasn't changed. My mind is more clear though which is awesome. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 19, 2013 Report Share Posted March 19, 2013 Dana - any rebound effects? crashing afterwards? Quote Link to comment Share on other sites More sharing options...
Birdlady Posted March 19, 2013 Author Report Share Posted March 19, 2013 I don't think so, but I vary so much from day to day it would be hard to tell tbh! Quote Link to comment Share on other sites More sharing options...
Birdlady Posted March 20, 2013 Author Report Share Posted March 20, 2013 Rama I saw an eye doc the other day and me taking PE will be coming to an end most likely. I have a tentative dx of an eye condition that can be made worse by high catecholamine levels (go figure...). I probably shouldn't chance it anymore considering POTSies have high levels any how, but I'm still curious to see how you feel. Quote Link to comment Share on other sites More sharing options...
issie Posted March 20, 2013 Report Share Posted March 20, 2013 Rama I saw an eye doc the other day and me taking PE will be coming to an end most likely. I have a tentative dx of an eye condition that can be made worse by high catecholamine levels (go figure...). I probably shouldn't chance it anymore considering POTSies have high levels any how, but I'm still curious to see how you feel. Dana, What did they figure out about your eyes? Is it something they can work with and help? Issie Quote Link to comment Share on other sites More sharing options...
Birdlady Posted March 20, 2013 Author Report Share Posted March 20, 2013 Well the doc isn't completely sure yet because I have to get more testing done to confirm this. It's hard to diagnose, but she thinks I might have acute macular neuroretinopathy. There's no treatment or anything they can do about it. Quote Link to comment Share on other sites More sharing options...
issie Posted March 20, 2013 Report Share Posted March 20, 2013 Well the doc isn't completely sure yet because I have to get more testing done to confirm this. It's hard to diagnose, but she thinks I might have acute macular neuroretinopathy. There's no treatment or anything they can do about it. How is it connected to catecholamines? I haven't looked it up yet - but, I'm sure you have. There is NOTHING ---that can be done?????? Issie Quote Link to comment Share on other sites More sharing options...
Birdlady Posted March 20, 2013 Author Report Share Posted March 20, 2013 No there is nothing you can do about it. I haven't seen anyone else with POTS describe what I have. I know many have other visual issues like floaters or visual snow, but not actual scotomas in their vision. You would think others would have this if it was only related to NE and epinephrine.http://eyewiki.aao.org/Acute_Macular_NeuroretinopathyI still don't know 100% that this is what I have, but it very closely matches my symptoms. It happened acutely after forcing myself to stand up for a very long period of time on several consecutive days. Quote Link to comment Share on other sites More sharing options...
issie Posted March 21, 2013 Report Share Posted March 21, 2013 I just read the link. I hope that's not it. But, it's another rare disorder. Nothing suprises me these days. It seems we get all the odd stuff. I hope they can sort it out and then come up with a solution. It didn't look like they have one according to that article though. Can you still somewhat see or has it gotten a lot worse? I wonder if the constant NE surges is what has done it? Something else for us to have to watch out for. Ugh! If it's not one thing it's 10. I'm so sorry Dana --I'll be hoping for the best for you. Keep us posted. Issie Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.