jpjd59 Posted May 23, 2012 Author Report Share Posted May 23, 2012 Kimbellgirl:Unfortunately she has been told not to take Klonopin because in very few people it can have a side effect of causing severe depression and suicidal thoughts and she has had severe depression reactions to two other medications that also had this side effect warning. Darn! Quote Link to comment Share on other sites More sharing options...
issie Posted May 23, 2012 Report Share Posted May 23, 2012 Kimbellgirl:Unfortunately she has been told not to take Klonopin because in very few people it can have a side effect of causing severe depression and suicidal thoughts and she has had severe depression reactions to two other medications that also had this side effect warning. Darn!Interesting finding. I can't use anything that works on GABA receptors - which is what Klonopin works on. I paradox with it and it causes me problems. I haven't done well on any of the antidpressant type things either and that's one reason why the Tramadol (being given off label for those who can't take these things) seems to be helping me. It's a very mild feel good response for me. I can't do even natural type supplements of GABA. I recently had someone e-mail me something they found on GABA and it will have this effect if the amount you take is too strong for you - it was recommended at a very, very low dose for those sensitive to GABA. It should decrease glutamate levels and glutamates are something I know I react to. But, so far, haven't found anything that works on GABA to be effective or mild enough for me.Issie Quote Link to comment Share on other sites More sharing options...
McBlonde Posted May 23, 2012 Report Share Posted May 23, 2012 I used to have bad "panic attacks". One Klonopin at night completely stopped those. Before Klonopin, I did it all, including behavioral therapy. I remember the therapist saying "what's the worst that could happen? You won't die." Well, I had a major "panic attack" while shopping and I tried to let it pass, but the worse did happen and I went into a full seizure of unknown reason and had to be hospitalized. Like I said, the Klonopin stopped that.On the other hand, 2 strong cups of coffee in the AM helps me feel better. POTS is crazy in it's contradictions! Quote Link to comment Share on other sites More sharing options...
issie Posted May 23, 2012 Report Share Posted May 23, 2012 I used to have bad "panic attacks". One Klonopin at night completely stopped those. Before Klonopin, I did it all, including behavioral therapy. I remember the therapist saying "what's the worst that could happen? You won't die." Well, I had a major "panic attack" while shopping and I tried to let it pass, but the worse did happen and I went into a full seizure of unknown reason and had to be hospitalized. Like I said, the Klonopin stopped that.On the other hand, 2 strong cups of coffee in the AM helps me feel better.POTS is crazy in it's contradictions!Coffee vasoconstricts and some need that and coffee helps with this. It also raises dopamine levels and that's a feel good hormone. So, it can have benefit for some in that way. Parkinson's and ADHD people are told to drink coffee because it does increasae dopamine levels. Just shows - what is bad for one - is really good for another.I wish, I got that response with the GABA drugs. Sigh!!!Issie Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted May 24, 2012 Author Report Share Posted May 24, 2012 Has anyone tried licorice root to combat the surges of NE? Quote Link to comment Share on other sites More sharing options...
issie Posted May 24, 2012 Report Share Posted May 24, 2012 Has anyone tried licorice root to combat the surges of NE?I'm having a hard time trying to find a connection. Licorice is more like florinef and works on that level. It is usually used to up blood pressures because it ups fluid volumes. Is there something you have read that connects licorice and NE together?Issie Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted May 24, 2012 Author Report Share Posted May 24, 2012 Issie:Yes, something on the internet said that licorice root acts like a MAO inhibitor which would help NE levels. I was uncertain of this because I, like you, had heard that it was like florinef. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted May 25, 2012 Report Share Posted May 25, 2012 Jp- if your daughter is hyper pots and has high NE then in my opinion leveling it or using meds that won't raise it are important. I think I'm hyper pots too I'll post after my tilt next week. When med are ne reuptake inhibitors they are preventing NE transportation out of the body so they are preventing elimination of NE, therefore they are actually increasing NE levels... I haven't found too many NE blockers per se because there isn't a market for it. I have to do more research to find a link btwn NE and anxiety... Quote Link to comment Share on other sites More sharing options...
bellgirl Posted May 25, 2012 Report Share Posted May 25, 2012 I eat licorice almost every day. It helps regulate me in more ways than one! Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted May 25, 2012 Report Share Posted May 25, 2012 Found a list of adreniline blockers http://en.wikipedia.org/wiki/Sympatholytic Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted May 31, 2012 Report Share Posted May 31, 2012 Anxiety as a symptom of POTs can be caused by many potential mechanisms but it isnt clear what causes it.Reduced cerebral sodium reception can cause feelings of anxiety and panic, hypocapnia which occurs in breathless POTS causes panic symptoms, elevated epinephrine which the body might try to use to maintain normal blood flow can be interpreted by the brain as fear and anxiety, some may have abnormal serotonin levels according to Dr Grubb, etc.There are two approachs. Dampening sympathetic excess or trying to treat POTS. Since most docs now agree that much of POTS is a response to reduced stroke volume you might find that volume expansion with licorice might help - it may also help through MAOI effects similar to Rhodiola. Alternatively you can use benzos, betas or what ever else to depress sympathetic activity but be cautious that dizziness may worsen.Also many POTSies are supersensitive to beta 1 stimulation. Normal stimulation but abnormal sensitivity. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted May 31, 2012 Report Share Posted May 31, 2012 Btw Rama have you ever had your cathecholamine levels tested or done a Valsalva Maneuver? Just curious if you have denervation or are hyperadrenic.. Quote Link to comment Share on other sites More sharing options...
Relax86 Posted May 31, 2012 Report Share Posted May 31, 2012 Before I completely figured out I was POTS I was having what I thought was anxiety but also probably POTS symptoms. I knew I had a lot of fear when my symptoms were bad and a lot of wonder/anxiety about what was happening and how I was going to get better. I ended up making a playlist of music that felt like it was empowering, most songs had a memory for me of a very safe time in my life. I used some 70's songs from my childhood that made me remember my parents together, taking us kids camping. It was safe music - a time when I remembered feeling safe. Even though there were days that I could barely tolerate the sound of the TV or the light thru the window I would spend some time listening to the songs at volume tolerated and focus on the emotion. I imagined myself feeling safe, getting better; also reinforcing that I really didn't have an anxiety issue but I have a condition which put me virtually in charge of getting better alone. I reminded myself that I would not die from this and tried to feel my memory of safety and happiness in the music. I haven't tried any meds for my sadness, anxiety issues yet...at last Dr's visit he asked if I would like something to help me with my sadness. But I'm not ready yet. I try and celebrate small successes and stay focused on the belief that I will get better or figure out an acceptable quality of life for me. This forum has helped with that tremendously. Ultimately when I didn't have enough info I had put myself into a nuero re-training program and then found this forum to assist in pushing and empowering me thru. Work in progress. Good luck allIncidentally one of my songs: Never going back Again from the Rumours album Fleetwood Mac. Quote Link to comment Share on other sites More sharing options...
issie Posted May 31, 2012 Report Share Posted May 31, 2012 Relax86, I like your attitude. I think that attitude and coping skills is probably one of the best things to help anyone get through something that is chronic. It's when we sink into despair and find ourselves in a place of limbo and dont have a direction that things will really start to go south for us. Finding a direction and having a focus is probably the best medicine for us all. (A good and positive attitude is definitely a plus.) I appreciated your comments.Issie Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted May 31, 2012 Author Report Share Posted May 31, 2012 Rama: I think you are exactly right! My daughter has an appointment next week with her doctor and I am going to ask the doctor about trying licorice. From what I read it might help (at this point it has to be better than doing nothing).Relax86: Thanks for the encouraging words. Unfortunately, it seems to be a high NE problem which hasn't been able to be helped by just relaxation or deep breathing techniques. Quote Link to comment Share on other sites More sharing options...
issie Posted May 31, 2012 Report Share Posted May 31, 2012 Alternatively you can use benzos, betas or what ever else to depress sympathetic activity but be cautious that dizziness may worsen.This is what I have found to be true with the use of clonidine. It really will lower your blood pressure and heart rate and it stops that horrible surge and anxiety - but, it causes more pooling - because it is a vasodilator -- and it causes dizziness and fatigue. Sometimes, depending on what the issues are - you have to decide which evil is the worst evil. At the time, my blood pressure was so high and my surges were hourly - even while sleeping. It was necessary to get my bp and hr down. The break has been a big relief. But, now having real issues with edema - maybe, will have to add something to this to counter-act that side effect. I asked at a doctors appt. yesterday if there was anything to help with the fatigue that it causes and the doc said that most people adjust to it with a little time. I don't know - we will see. My having edema would suggest that there isn't a hypovolumia problem - but, who knows. At the very least there is a vascular problem - because my edema isn't just in my legs and feet - it's all over. They are checking my kidney, liver and heart functions. Got a whole bunch of testing lined up. Here we go again. I HATE GOING TO DOCTORS - AND REALLY HATE ALL THESE SEEMINGLY ENDLESS TEST. Doctors don't really seem to know what to do with us. Just a note - I tried the licorice and it really does give you a sense of calm. But, it did increase my blood pressure - if yours needs to be increased - it might be a good choice to try. I liked the way I felt emotionally on it - but with my high bp's can't do it - by itself. It might would work better now that I'm on blood pressure meds though. Might be the one thing to help balance out my issues. Hummmmmmm!!!!!Issie Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted May 31, 2012 Author Report Share Posted May 31, 2012 Issie:Glad to know that you felt emotionally better on licorice. Sorry you can't take it because your bp is too high. Sometimes it seems like we are all going around in circles trying to fix one problem, which sometimes creates other problems.I hate POTS!!!Pam Quote Link to comment Share on other sites More sharing options...
bellgirl Posted May 31, 2012 Report Share Posted May 31, 2012 Licorice is also good for digestion. I find it funny that I did so many things, like this, before being diagnosed, to keep me balanced...just listening to my body Issie...Hope your tests go well!! Quote Link to comment Share on other sites More sharing options...
issie Posted June 1, 2012 Report Share Posted June 1, 2012 Thanks Kimbrellgirl, me too. They took enough blood. I have my ultra sounds set up for next week - will spend all morning down at the hospital. But, maybe, it will give some clues.But, I think I might have figured out some of my edema issues. I've been drinking fizzy mineral water. I did a search on line this morning and figured out that it can cause edema. I knew that I hydrated better with it. . I just need to cut back on how much I'm drinking of it. Maybe, that's what did it. It does have a little salt in it, but not that much. It'd be great if that is what is causing some of the issues. Maybe, it would help others that need for fluid volume. Issie Quote Link to comment Share on other sites More sharing options...
issie Posted June 1, 2012 Report Share Posted June 1, 2012 Sometimes it seems like we are all going around in circles trying to fix one problem, which sometimes creates other problems.I hate POTS!!!PamYou are so right. It seems the ride never ends - it just starts up again. We may get that, I'm slowing down - it's about to be finished and then boom someone hits the start switch again. I want off this ride. Got better things to do with my life. Issie Quote Link to comment Share on other sites More sharing options...
bellgirl Posted June 1, 2012 Report Share Posted June 1, 2012 Issie, I can't tolerate carbonation hardly at all. I used to enjoy an IBC root beer or ginger ale, but with all the air I tend to swallow with my Cpap, I end up quite bloated at times, and the extra salt with soda, so that could be your problem. Also, since we drink so much, every time we take a sip of something, even without a straw, we are always taking in air with it!! Quote Link to comment Share on other sites More sharing options...
blueskies Posted June 2, 2012 Report Share Posted June 2, 2012 I'm really struggling with flight or fight response feelings at the moment. I can be lying on lounge reading and it will start up. But I've also noticed I rapidly 'panic' -- tachy, sweating, hot, followed by breakthrough migraine -- when something only a little stressful happens. Say I think I've lost my mobile phone or something. My response is completely out of proportion to the event. I over-react physically. I will be telling myself this is a little thing but my body will be reacting like it's a life or death situation. It's happening so many times a day now. Time to go back and see my pots doc because I'm pretty sure this is not a psychological thing but a pots thing. It's the exact same reaction that I have when I stand still in the bathroom when cleaning my teeth -- but I can avoid this by sitting down. Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted June 2, 2012 Author Report Share Posted June 2, 2012 Blue:You have described it perfectly! My daughter has had POTS since July 2011 and the last month has been horrible as far as the POTS symptoms and the "panicked" feeling. Everyday seems to be filled with several episodes (and a lot of tears). We are all at our wits end and just trying to hold on until her doctor's appointment next week.Let me know if you find anything that helps you.Pam Quote Link to comment Share on other sites More sharing options...
Relax86 Posted June 2, 2012 Report Share Posted June 2, 2012 Dumb question: Regarding licorice....are people buying the candy?? Are people using the herb??? I'm sorry to have to ask ~ Tracy Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted June 2, 2012 Author Report Share Posted June 2, 2012 Not a dumb question. No, the candy isn't supposed to do anything. I have heard that it is the herb (licorice root). My daughter is going to ask the doctor about it next week. Quote Link to comment Share on other sites More sharing options...
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