issie Posted February 3, 2012 Report Share Posted February 3, 2012 I've been having a rough time lately and can't seem to snap myself out of it.First, I did a steroid pack to see if it would reset my autoimmune system and the benefits of it lasted about 6 days and the good wore off. Then I did an experiment with midodrine and that sent me reeling. I couldn't get a hold of my emotions and have been crying for days now. I don't think it was supposed to do that. My blood pressure went up really high and unless I take some herbals to vasodilate and magnesium to bring it down it's staying stroke level high. I'm having to do that 3 times a day. Every since I did the steroid packs my symptoms seem to be intensified and reactions more accute. I'm having heart pains, panic type feelings, crying jags and feel almost like I'm going through grief. But, I'm not depressed - it's a different feeling. Hard to explain. This morning I had the numbness in the face thing return. I'm having more dizzy, fainty spells and terrible brain fog - almost like I'm here but, not here. I'm using wrong words when I'm talking too. And my speech is slurred. I don't know what's going on. This is not a good feeling.I try not to complain and try to upbuild everyone else - but, just hoping someone may have some insight that I haven't considered. Hope I didn't bring anyone down. But, I don't like the place I'm in right now. Needing my friends and support.Issie Quote Link to comment Share on other sites More sharing options...
juliegee Posted February 4, 2012 Report Share Posted February 4, 2012 (((((Issie)))))So sorry you're feeling so hopeless and frightened. Honey, I've been there before. I get where you are Those 'roids can really mess us up. Getting off can set off severe MCA in folks who are susceptible and make EVERYONE feel plain awful I suspect that you will get back to your previous level of functioning if you can just ride out this bad patch. That facial numbness is usually an allergic reaction for me, which might also explain the BP changes, etc. I know you are HyperPots and suspect MCAD, right? What H-1 are you taking? Wonder if upping that for the short term may help? No real advice or insight- just ramblings. I just wanted you to know that I care. Hugs-Julie Quote Link to comment Share on other sites More sharing options...
kayjay Posted February 4, 2012 Report Share Posted February 4, 2012 I am sorry that I have no wisdom to "fix" you or any real help to give. I do want you to know that I understand how you feel and hope that knowing that you are not alone in your grief may help lift you a little.A body that does not work often feels like a trap that you cannot get away from. i don't know if this makes sense but i often wish I could escape myself and get away from dysautonomia. Your positive way of lifting up others is something to be admired, but it is normal to feel sad, lonely, depressed and to feel sorry for yourself at times. Please don't think that you are having a "pity party".when I have had my worst POTS it has been after any medication that sets off adrenal surges. I would guess that a steriod would do that and it can also raise your blood pressure. It takes some time for those types of meds to get out of your system. I am sorry that I have no help for you during this darker time Issie, but you will be in my prayers ( I keep a list so I don't forget)!HUGS from a fellow potsie ((( )))) Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted February 4, 2012 Report Share Posted February 4, 2012 I think it's the steroids. I felt racey, emotional, hungry and all kinds of stuff when I took them. I also developed high pressure in my eyes which they thought might have been the beginnings of glaucoma, but turned out it was just from the steroids- this went away. And I only took them for a week or so! An endocrinologist at the time told me it can take months to fully get out of your system. And they do raise blood pressure. This will pass Issie. You're always so comforting to others - it's ok to take a moment for yourself! ((hugs)) Quote Link to comment Share on other sites More sharing options...
McBlonde Posted February 4, 2012 Report Share Posted February 4, 2012 Oh no Issie!I am so sorry to hear this!! Steroids .... was it Prednisone? can do this to a patient. They did have you taper down, right?Hugs and prayers to you!! Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 4, 2012 Report Share Posted February 4, 2012 issie,Really sorry you feel so awful right now. I had a bad reaction to a med late summer/early fall and was so sick I frankly didn't know which end was up. It's a really bad feeling to not be in control of our bodies and the dysautonomia gig makes it so hard to try to regain control because of all our weird drug reactions. Most people get a headache and take an aspirin...we have to consider if taking an aspirin is worth all of the potential consequences. I don't have any suggestions other than just to hold on and know that this too shall pass. Know that you are not alone and I, too, am sending good thoughts and prayers your way.Katie Quote Link to comment Share on other sites More sharing options...
POTSMama Posted February 4, 2012 Report Share Posted February 4, 2012 Issie - - big cyber hugs coming your way. I felt like that some weeks ago, remember, and everyone told me to wait it out and it would get better.... it has. Not perfect by any means, but better. Recall that I took the first 2 1/2 days of a Medrol pack and felt awful for 2 weeks after that too (and I only made it 2 1/2 days before my doc said go ahead and stop due to the side effects it was giving me). So, hard as it is, keep telling yourself that this too will pass - - distract yourself if you can. What seemed to make a big difference for me in terms of recovery after the steroids was that I added Allegra (which is over the counter) as another H1 blocker. Can't be sure that was the one, but I have seemed to be about 50% better since then. Just know a lot of us are thinking about you, and complain anytime you need to. You've had a tough row to hoe and earned your right to complain! Feel better.... Quote Link to comment Share on other sites More sharing options...
sue1234 Posted February 4, 2012 Report Share Posted February 4, 2012 Oh, steriods always used to do a number on me, too. I hope it levels out soon for you! Quote Link to comment Share on other sites More sharing options...
issie Posted February 4, 2012 Author Report Share Posted February 4, 2012 Thanks all. It's so nice to know that I'm not all alone. I'm sorry though, that others have to experience the things that we go through.It's good to know that possibly it may be the steroids - but, I noticed more issues after I took the midodrine. Maybe, it was the combination of the two. I did taper off the steroids. It was a 6 day pack that included the taper. The first few days were horrible and then on the 4th day my pain got better and I seemed to not have as many crazy swings in my bp and pulse rates. But, after 6 days of being off - everything went back to the same - but maybe a little worse.Glad to know about the eye issues. I told someone when I was doing the midodrine experiment that my eyes were hurting and the blood vessels were really prominent in them - it was probably because of the high blood pressure that I got. But, it was really uncomfortable. I'm glad it will go away - because my mom is blind from glycoma and I don't want to lose my vision on top of it all. It was during this drug trial that that the emotional thing came over me and it hasn't left. I will be fine one minute and just start crying feeling the lowest blue (like grief) all of a sudden and my heart hurts when it happens. I'm having a knawing type of chest pain that is there all the time and it feels like pressure. Weird fuzzy vision and brain is just not there . . .feels like I'm functioning but just in automatic - not in control. (If that makes any sense.)Julie, I've been using Claritin but, just took a Benadryl as that seems to be stronger. I don't like taking it because it makes my tremors worse - but, it does help allergy type symptoms better. So, maybe that will help. Tomorrow, I'll go back to the Claritin and Tagament. Yes, they do believe that MCAD is one of my issues and I am hyperPOTS with higher bp's. Haven't found any of the normal blood pressure type meds that I can tolerate.You know, I appreciate you guys and your giving me support. None of us really have an answer but having people that understand and care is so important when we have such a long lasting and chronic situation. And your right - I totally understand about the feeling of being trapped in our bodies and not having a way out. That's exactly what it feels like. I'm really tired of it too. Thanks for the hugs and well wishes. (((((HUGS - Back to YOU!!!)))))Issie Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted February 4, 2012 Report Share Posted February 4, 2012 What you just explained is what I have been feeling like for the past 2 years non stop! Its absolutely terrible. I hope you start feeling better soon Quote Link to comment Share on other sites More sharing options...
issie Posted February 4, 2012 Author Report Share Posted February 4, 2012 Thanks dani, I'm sorry if the intensity of your issues are as bad as mine are right now - for 2 years. I don't think I could survive this feeling that long. I've had POTS most of my life - since I was at least 8 years old - but, the intensity of this eposide is really horrible. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted February 4, 2012 Report Share Posted February 4, 2012 Issie my friend,I'm sending positive thoughts and energy, and prayers your way. Please let me know if I can help in some way. Hang on and know that eventually, things will probably get better and return to "normal" for you. Wish I could be there to give you a hug.Jana Quote Link to comment Share on other sites More sharing options...
issie Posted February 4, 2012 Author Report Share Posted February 4, 2012 Thanks Jana,You're a dear friend also. I will consider myself hugged. Just having support of others is a great comfort to me.Ha!Ha! - What is normal? Issie Quote Link to comment Share on other sites More sharing options...
issie Posted February 4, 2012 Author Report Share Posted February 4, 2012 I think I figured out what caused some of my issues. It's the new magenesium that I added. It crosses the blood brain and I took only it this morning and all those symptoms are here. The chest/heart pain, numb face, dizziness, brain fog, slurred speech, vision issues. I called the Life Extension people and reported the results and they took down all my meds and supplements to send to the science dept. Said they may be in touch to get more info of my reaction. Don't take this type of magnesium.I just took some allergy meds and hope it counter-acts it. I took the Bendryl and Claritin and Tagament last night and got better. Issie Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted February 4, 2012 Report Share Posted February 4, 2012 I'm sorry you are having an especially hard time right now. Hope things improve for you soon. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted February 4, 2012 Report Share Posted February 4, 2012 Hoping stopping the magnesium gets you out of this awful flare......poor Issie! Big Hugs!!!!! hang in there.......Bren Quote Link to comment Share on other sites More sharing options...
bellgirl Posted February 4, 2012 Report Share Posted February 4, 2012 So sorry Issie...you are always the one encouraging others. I was really surprised when I saw it was you. Hang in there. Medications can sometimes throw us for a loop. I was on a Beta Blocker that made me cry uncontrollably for no apparent reason, and then when I got off of it, I ended up with a panic attack!! I take Losartan for increased blood pressure for about 10 years, and never have suffered any adverse effects from it. Used to be Micardis, before it went generic. I would highly recommend it. I also take a long acting beta blocker called Bystolic. It is a new one, and it stopped alot of my tremulousness. I can relate, as I've had stroke like symptoms, too, vision problems, dizziness, slurred speech, brain fog, heaviness in limbs on one side, etc. before I was on medication. Lists really do help when you can't remember things!! Dysautonomia can be the pits at times, because some days are better than others, even on meds. I've had a lot of pain in my side, lately, with nothing to give me relief. Even my smooth muscle relaxants didn't help with that, so I just pray about it, and try to eat right, lots of yogurt! While I'm praying I'll say one for you, as well.... Quote Link to comment Share on other sites More sharing options...
issie Posted February 4, 2012 Author Report Share Posted February 4, 2012 I've tried both of those meds over the years and couldn't do either one of them for long term. I started out okay and after a few weeks would have too low bp's on the bystolic and just couldn't function - really tired. And the Lorsarten, made me feel like I was having a heart attack. I don't think it's good for those with already too low renin/aldosterone levels and if that new info that was recently uncovered (autoantibodies to ACE2) - it may not be a good idea for some with low flow pots and hypertension to have extra potassium. Thanks for sharing and for your suggestions - always open to ideas.I try to be the one to be up-beat and encouraging - but, this time round - I needed the help. Thanks for your well wishes. Medicines and natural things can mess us up - even though I'm pretty educated on those things - sometimes, trial and error - wines up being more error. I'm hoping that the magnesium was part of the issues and not some other something starting up. I'll hold my breath on this one. The allergy meds seems to be helping - been taking them throughout the day like Julie suggested. Issie Quote Link to comment Share on other sites More sharing options...
Serbo Posted February 4, 2012 Report Share Posted February 4, 2012 Best of luck getting back to your baseline Issie. Hang in there, once you get your ducks in a row with the meds i'm sure you'll be back to baseline soon.Aaron Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 5, 2012 Report Share Posted February 5, 2012 Fingers crossed that its the magnesium...that would be an easy one to fix! Quote Link to comment Share on other sites More sharing options...
bellgirl Posted February 5, 2012 Report Share Posted February 5, 2012 Now you are making me wonder if the magnesium caused the horrible pain in my side, possible flank pain. It says on the bottle not to take if you have any kidney issues, (which I just read), and I think my kidney's are what caused my hypertension to begin with. I actually, have too much renin/aldosterone so that is why the Losartan, an angiotension receptor blocker, works so well for me!! My dad had kidney stones with his high B/P,; and I am my father's daughter, after all...My pain finally subsided, btw. It just took a little longer than I thought it should with the muscle relaxant...when you've been in constant pain for 5 days, one tends to get a little impatient Hope it's only the magnesium for you, as well. Quote Link to comment Share on other sites More sharing options...
issie Posted February 6, 2012 Author Report Share Posted February 6, 2012 I think it is just that particular kind of magnesium. It was one that is supposed to cross the blood brain barrier and is actually supposed to help with PTSD. So anything that powerful, would obviously affect whether or not you'd having crying jags. But, for me - I tend to have paradox reactions to things. Instead of blocking emotions on me - it intensified things. All day yesterday, I took Claritin and Tagament and slept really well last night. I'm still not 100 percent - but, better. I'll go back to just the regular magnesium - not the kind that crosses into the brain and spine. I can't mess with my brain chemicals or it messes me up. I found that with all SSRI's and SNRI's that I tried. They try those to try to calm the autonomic system down and with me - paradox. Tried nearly all of them.Are you making sure you're drinking enough with your kidneys? There are natural things you don't want to take with kidney stone history. Magnesium will up the calcium levels in your body - maybe better than calcium itself. So, if you are too high in calcium - could be an issue. Also, with the meds raising your potassium levels it is going to be very important to keep your balance between calcium/magnesium and potassium. Could be an imbalance issue.Issie Quote Link to comment Share on other sites More sharing options...
sue1234 Posted February 6, 2012 Report Share Posted February 6, 2012 Kim, I was thinking about your kidney stones, also, wondering also if you have high calcium. Have they checked your PTH levels? Quote Link to comment Share on other sites More sharing options...
bellgirl Posted February 6, 2012 Report Share Posted February 6, 2012 I'm going back to two of my doctor's in March, and I will address this and have some blood work done. Actually, my dad's stones, years ago, were Uric Acid stones ( but meanwhile staying off the magnesium)....thanks you guys for the help. Didn't mean to take over Issies's topic; just thinking "out loud" on cyber space...lol. I have so many questions, and have learned so much on this site through others, but to be honest, there are so many things that even the doctor's don't understand. I'm just trying to take care of myself, the best I can, because I am truly getting help, also from the medical community, finally, and feeling much better, for the most part, but I still have dysautonomia, and I have accepted that after 13 years of symptoms , not that I'm ever thrilled to have it...but it is, what it is Quote Link to comment Share on other sites More sharing options...
issie Posted February 6, 2012 Author Report Share Posted February 6, 2012 That's okay - you never know what someone will say to trigger a question in us. I don't mind your interjecting into my sob stories. Gives us something else to think about. Issie Quote Link to comment Share on other sites More sharing options...
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