issie Posted January 13, 2012 Report Share Posted January 13, 2012 Yeah, I did okay on the kenalog injections for the alopecia and felt better with those - but, this medrol pack is NOT good. Will have this on my list of what NOT to do. Live and Learn . . .if it doesn't kill us first. LOL!! Quote Link to comment Share on other sites More sharing options...
Trach Posted January 13, 2012 Report Share Posted January 13, 2012 I have used steroids periodically over the past several years to bust migraines and for bronchitis. I usually feel great around the second or third day, but i have a terrible problem sleeping. The last time I used steroids to bust a migraine my POTS symptoms were also in a full flare, and the effect of the steroids was minimal. However, my neurologist wants scale back my prednisone use. He is concerned about the side effects - stomach bleeding and suppression of my autoimmune system.I don't think it can hurt to try as long as your physician is monitoring you. I also believe the accepted level of steroid use depends on the doctor's specialty. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted January 13, 2012 Report Share Posted January 13, 2012 The only one I know of is lupus that worsens when you are in the sun...? Quote Link to comment Share on other sites More sharing options...
issie Posted January 14, 2012 Report Share Posted January 14, 2012 Well on the 4th day, of the taper and tonight - I feel better. The one thing it has done is really help with - INFLAMATION, and pain. I really don't hurt as bad. I also can stand for a longer period of time. So, maybe the benefits will become more apparent with time. We will see. Headache is not here today and not having naseau and dizziness - so that's good. The first few days were awful though. Few more days to taper and then will know the full effects.Issie Quote Link to comment Share on other sites More sharing options...
yogini Posted January 14, 2012 Report Share Posted January 14, 2012 Not sure i understand the light theory. I think we feel better at night because we have been drinking water all day. In the summer it is light til late and I know I still feel better in the early evening, so doesnt seem like light is a factor. There are definitely some people with an autoimmune component, and others without. Rama is right - many different causes. Quote Link to comment Share on other sites More sharing options...
issie Posted January 14, 2012 Report Share Posted January 14, 2012 Not sure i understand the light theory. I think we feel better at night because we have been drinking water all day. In the summer it is light til late and I know I still feel better in the early evening, so doesnt seem like light is a factor. There are definitely some people with an autoimmune component, and others without. Rama is right - many different causes.I've never heard of it, but reserve comment until I've had time to do more research. Something new to me. Interesting thought - but never heard it. Quote Link to comment Share on other sites More sharing options...
hilbiligrl Posted February 14, 2012 Report Share Posted February 14, 2012 issie~ i was wandering how you would have rated the steriods..... I am in an intense (pretty sure mcad) flare since coming home from the concert a week and few days ago and my doc prescribed prednisone to see if would cut the attack and possible cut my headaches and tmj pain too. Im scared to death to take it as i have never taken it before, but im feeling horrid and it's getting unbearable. We are also trying a low dose of doxepin, as i had some left and experimented with it (told my doc i did)..... basically i would take about 10 mg in the morning and did it for 2 days... it was the only 2 functionable days in the past week and few days.... but i can't take it long term....but anyways, i am very scared to try new stuff, but open and willing to do so if im gonna make progress..... i start in the morning with my first dose.... i never start a new med at night.thanks.....tennille Quote Link to comment Share on other sites More sharing options...
issie Posted February 14, 2012 Report Share Posted February 14, 2012 Everyone is so different and I really can't tell you what you should do. The thing is, what may or may not work for me - might be perfect for you. It is scarry trying new things. It was for me when I tried the steroids. For me, the benefits didn't last long enough. When I have a really bad flare with MCAD I will use Claritin, Tagament and Benadryl. But, the Benadryl gives me really bad tremors and tacky. I will also take a puff off of Albuterol - for breathing issues. I also do natural type antihistimine things like Vit C and Quercetin. But, as you know - different subset types of POTS react differently to meds. and supplements.But, there have been some that the steroids have worked wonders for. I know I haven't helped you to decided anything. Just know, I understand your fears and have them every time i try something new. Not knowing what the reaction will be. Sometimes, it's good and sometimes really bad.Let us know how you do.Issie Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 14, 2012 Report Share Posted February 14, 2012 I honestly believe that POTS is predominately caused by an autoimmune reaction. The reason I say this is based off of indirect evidence namely the fact that our symptoms improve at night. It is well known that light sources can intensify autoimmune diseases. Therefore it seems reasonable that our symptoms would go down at night time when our auto immune reaction is slightly less.,The reason most of us feel better at night is because of increased vagal tone and sympathetic withdrawal. Your SNS is greatly reduced starting in the early evening and progressively withdrawals until early morning, at which point it begins dramatically increasing dominance again. We feel better at night because our PNS is very dominant and have high vagal tone- which causes decreased heart rate and blood pressure. There is a theory that some pots are hyper sensitive to catecholamines, if you have high vagal tone at night you are going to have a decrease in that hypersensitivity. This is also why many of us wake up suddenly in the wee hours of the morning with tachy/adrenaline rush. There is a surge of adrenaline for every person right before waking but your not supposed to realize it. People with pots are hyper sensitive to it and develop the tachy/dizziness. There is a theory that pots is related to parasympathetic withdrawal. This theory is supported by the understanding that there is sympathetic excess in the mornings and PNS withdrawal, and PNS dominance in the evening and at night. There are a few AI disorders that cause light sensitivity, but a lot are not effected by it and some that are greatly helped by UV exposure- psoriasis. I totally agree with the AI theory for pots- I have a high speckled ANA, but I'm pretty positive the symptom improvement in the evening is related to sympathetic withdrawal and PNS Dominance. Quote Link to comment Share on other sites More sharing options...
hilbiligrl Posted February 14, 2012 Report Share Posted February 14, 2012 Everyone is so different and I really can't tell you what you should do. The thing is, what may or may not work for me - might be perfect for you. It is scarry trying new things. It was for me when I tried the steroids. For me, the benefits didn't last long enough. When I have a really bad flare with MCAD I will use Claritin, Tagament and Benadryl. But, the Benadryl gives me really bad tremors and tacky. I will also take a puff off of Albuterol - for breathing issues. I also do natural type antihistimine things like Vit C and Quercetin. But, as you know - different subset types of POTS react differently to meds. and supplements.But, there have been some that the steroids have worked wonders for. I know I haven't helped you to decided anything. Just know, I understand your fears and have them every time i try something new. Not knowing what the reaction will be. Sometimes, it's good and sometimes really bad.Let us know how you do.IssieThank you issie your post did help me. And you are so right..... one thing that is certain, is that all of us here do respond pretty much differently to meds. I started to prednisone today..... so im keeping my fingers crossed I too, can't take benadryl without feeling exactly the way you describe, by my reaction is so intense that i just wanna admit myself and peel out of my skin.... atarax does the same thing.Im hoping that the low dose of doxepin and the prednisone work...... im always afriad to try new stuff, but im always willing to try anything really, as that's the only way to know what is going to work and what doesn't.Listen, issie, I have follwed many of your posts and I am totally into the chinese, natural, herbal, homeopathic meds. I read where you were having some good response from something knew you have tried, but i know you didnt want to share it until you were on it longer..... just wandering, would you be willing to inbox me what that med/supplement is? Also, id love to hear anything that you are taking, have took that works for you, that are alternative methods/meds. I started taking ashwaghanda about 8 weeks ago and im getting some pretty good results from it..... very noticable results. Ok, i better jump off of here, my brain is not in a good mode today and im misspelling everything right and left .... lol....thanks issie so much!!! I hope to talk to you more in private on some of the stuff you know alot about with the alternative methods you use. tennille Quote Link to comment Share on other sites More sharing options...
issie Posted February 14, 2012 Report Share Posted February 14, 2012 I know, some are waiting to see what I've started using that's new. I really want to give it at least another week. Sometimes, I've had things work well and then after a few weeks stop working or have too many side effects. I will post it when I've given it a little longer to see what the effects are going to be- more long term. But, then keep in mind. I may be a different subset-type of POTS and what will work for me - may not work for another. So, I'll also post what all I know about the type of subset I am and then what I'm using and why. Just be patient. I have to really - check it out first. But, so far - I'm really excited.Issie Quote Link to comment Share on other sites More sharing options...
hilbiligrl Posted February 14, 2012 Report Share Posted February 14, 2012 I know, some are waiting to see what I've started using that's new. I really want to give it at least another week. Sometimes, I've had things work well and then after a few weeks stop working or have too many side effects. I will post it when I've given it a little longer to see what the effects are going to be- more long term. But, then keep in mind. I may be a different subset-type of POTS and what will work for me - may not work for another. So, I'll also post what all I know about the type of subset I am and then what I'm using and why. Just be patient. I have to really - check it out first. But, so far - I'm really excited.IssieOh wow!!! Im so excited! I will definitely be watching out for your update about it I am intrigued! And always wiling to try new approaches, alternative meds, etc.... I do hope it stands firm even still in the long run thank you for being here Quote Link to comment Share on other sites More sharing options...
anaphylaxing Posted February 14, 2012 Report Share Posted February 14, 2012 Hilbiligirljust wanted to make sure they're not leaving you on Pred for a long time? what dose?I started on it for anaphylaxis turned MCAS and it fried my adrenals (well, my HPA axis) and I'm having a horrible time getting off of them with reactions flaring everytime I taperWhen I get off I will max out on every other med possible before trying steroids againthe mast cell disease docs don't like using steroids for anything except anaphylaxisNo trying to be a wet blanket, it will probably be fine for you , just wanted to sharecheck out my blog if you want more detailshope you feel better soon! Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 14, 2012 Report Share Posted February 14, 2012 Hey Tennille,We can be guinea pigs together...the immunologist just started me on prednisone today too. He said I look like crap (which I do cause I'm in a flare) and we might as well find out how it goes while I'm waiting to see the rheumy. My fingers are crossed for both of us! I know there are risks with the steroids but they are actually much safer than the other class of drugs we are considering for me so its well worth a try. Katie Quote Link to comment Share on other sites More sharing options...
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