michiganjan

Thanks to you all, I am less confused in one way, and more in another. Dr. Grubb does have me labeled as having the adregenatic form of POTS, yet he put me on Cymbalta and also wants me to try Mestinon. I haven't started either one yet. I am suffering right not with irritible bowel, so if I try a new med, I won't know what is caused by the med and what is there anyway from stress. When I have tried Prosac, paxil, and lexapro, they all pushed me into hypomania. I sure did get things done! Wellbutrin made my liver function go up. Paxil made me gain weight like crazy and constipated me terribly, terribly, terribly. So now here is this drug, cymbalta that is balanced. I just can't imagine that it will be good for me if all the other SSRIs I tried were not good for me and if wellbutrin pushed my liver function. I do have blood test orders to get a liver function test before starting the cymbalta and then at 3 month intervals. I could try the mestion first, I guess. I certainly can' t try them both at once. However, I would like my iritible bowel to settle down first, so right now I am just biding time and reading, trying to get a grasp on what is the best thing to do.

Thanks to Buddy Lee's Wife, Sophia, and Poohbear for responding to my question about the NET defect. You all three wrote to me and said basically the same thing. However I am confused again. I swear my brain has been damaged from so many years of POTS! Here is a quote from PoohBear: "The high levels of norepinephrine, if you had them, would tell you to stay away from meds that inhibit the reuptake (such as tricyclic antidepressants, amphetamines, etc). I also find that anything that increases my norepinephrine levels makes me feel horrible and this makes sense to me too." Okay. Isn't wellbutrin a norepinephrine reuptake inhibitor? And yet Dr. Grubb has put POTS patients on it--he had me on it a few years ago. Also I just saw him last week and he prescribed Cymbalta, which I understand is a balanced seritonin and norephinephrine reuptake inhibitor in one. So how does this make sense? Wouldn't I want to avoid Cymbalta?

Okay, I read both articles. I am confused as always, maybe because I don't have enough blood to my brain! Anyway, if one does have the NET defect, then how does one treat it? If Linda and her family were tested and it is known that they have this defect, then what, if anything, has worked for them?

I just ordered the book. I am looking forward to getting it and reading it. Congratulations on finishing it! That is a really big chore.

Linda, I think you are in the best possible hands. I will keep you in my thoughts on Monday. And I will be waiting to hear what happens.

Dr Grubb put me on Cerefolin to help me think better. I took it for a few days, did not have any bad effects, but when I told my primary care doctor that I was taking Cerefolin, he told me to stop taking it. He said that there are studies that implicate the B vitamins in increasing cell division. He did not think the Cerefolin is a good thing to do. I cannot find anything much about the B vitamins and cell division. Has anyone heard of this being a problem? All right, all you wonderful researchers.

Where's the list? I want to try it for awhile. Can somebody send me the list?

I am so much better off without my gallbladder.

According to my doctor, decaf and caffine free are not the same. Decaf has some caffine in it. I was told not to drink any caffinated beverage or any decaf beverge either. I get buy with caffine free herbal teas.

Dear Dayna, Patience is the watchword when it come to trying meds to help your dysautonomia. I am sensitive to meds like you are. I do not think there is any substitute for going through the lengthy trial and error process. I always try to stay on a drug long enough that I feel sure it is not helping before abandoning it. That way I do not have to revisit that med in the future. Be sure and keep a med list. What you tried, dosage, and how long you took it. This list can be invaluable later on. If you don't get help, just keep on trying. They are coming up with new ways to treat dysautonoima all the time.

This is wonderful! Anything to raise awareness is great and then to get an award? Congrats!

Just let it all out. Just keep telling yourself that it won't last. You will be feeling better.

I got my brochures today in the mail. Michelle, they are wonderful. I think this is the way to do it.

Amazing feat! You go!

Sophia, Yes they still do the incline. It starts out level then increases the pace and increases the incline. It is the incline that will get you before the pace will.

Jane, How wonderful to stand in line and then be rewarded with a gift! They should give prizes at the groceries for dysautonomiacs. Hmmm. I think I coined a new word. Dysautonomiac. Sounds a bit like a maniac. Maybe a dysautonomiac is a maniac with dysautonomia.

To Morgan, I don't know how long I stayed on the treadmill this time--perhaps 8 minutes. Five years ago I went for 11 minutes, but only because they did not increase the speed beyond a certain point due to my having trouble walking at a higher speed. Today they told me my heart had to get to 137 BPM before they could inject the cardiolyte. Then I had to last another 30 sec to 1 minute before getting off the treadmill--then right to the machine that takes the pictures. I told the exercise physiologists that they should tell me when I hit 137 and I was going to get the cardiolyte and walk my 30 seconds and quit right then. They told me only if I felt I was working hard. That is how it went, I hit 137, felt like I was working hard, got the injection, lasted out my extra 30 seconds and quit. I was darn glad I did not take my beta blocker this morning. If you don't get the heart rate high enough before you wear out, they don't inject the cardiolyte and you don't get pictures taken. Then you may be in for an angiogram to see the heart.

I am a real baby when it comes to getting medical tests. I am famous for my no-drug 2/3 colonoscopy! (Now that was just plain stupid of me because I still need to get another one done!) This morning I had my cardiac profusion stress with cardiolyte. I was nervous when they took the initial pictures of my heart and after, the technician said I had moved too much but she was able to correct the pictures. She then warned me that if I moved that much during the second set of pictures after the treadmill stress part of the test that they would not be able to read them. I got through the treadmill part and having the cardiolyte injected twice and on the last set of pictures I was textbook perfect in terms of keeping still. I lay there and prayed decades of the rosary! (I haven't actually said a rosary in years, it was a mental workout just trying to remember!) I am crowing because I am happy I did it. Won't have the results for awhile, though. I even left Jeff sititng in the waiting room and went through it all without him next to me. He always held my foot while I had an MRI! Next I might be standing in line at Hallmark behind Jane Eyre! Sorry Jane, I mispelled Jane in my headline.

Dear Lisa, My appointment was at 1 p.m. We arrived a few minutes before 1 and waited 15 minutes to get put in a room, then had a nurse take my blood pressure, then saw Beverly, and then Dr. Grubb. Beverly talked to me about 1/2 hour and Dr. Grubb about 45 minutes. Also I got lucky getting the appointment. I decided I wanted to see him two weeks ago, called and got an appointment for the next week. There was one open due to a cancellation. As I was checking out, they made an appointment for me to come back in nine months. Mestinon is 60mg. I am not taking it yet. May not start it for a couple of months if I decide to take the cymbalta first, as Beverly recommended. Just took the cerefolin this morning first time. No problems so far. I want to do at least a week on the cerefolin before starting anything else. I also have to get a liver function test done before starting the cymbalta because when I took Wellbutrin in the past it raised my liver function above normal.

Dr. Grubb prescribed it for me and said that it can help with POTS symptoms.

I recently saw Dr. Grubb, Among other things, he prescribed cerefolin. I started it this morning. Nothing to report pos or neg but I will let you all know what it does for me. It is supposed to help the brain function better, help one think better. I also have prescriptions for Cymbalta and Mestinon. It will take me some time to try these. I want to take the cerefolin for at least a week and then try the Cymbalta first. Mestinon will have to wait for a couple of months most likely. I also got a prescription for a stress test which I have tomorrow morning at 9. I really don't need to find out I have heart disease right now, but Dr. Grubb and Beverly both wanted me to get the test so I will. I am just glad I can get it over with tomorrow.

I just got my DINET bracelet in the mail today with a cherry thank you note from Mighty Mouse. I am wearing it now and I think it is quite pretty, however something happened that I did not expect. After I put it on I began to feel connected to you all in a new, stronger way. Everytime I look at my wrist I know I am not alone. It is really comforting and I did not expect this. I think for me wearing the bracelet is less about awareness to others and more about being connected to all of you. The bracelet is kind of like a hug from Dr. Grubb, well maybe not exactly but in the same ballpark. Note to Mighty Mouse. I do wish it were a bit longer or a complete circle like a bangle. Just a suggestion for next time...

My goodness, I just got a prescription for Mestinon from Dr. Grubb. And here you go and post this coupon. Thanks a bunch!

I now have a prescription for cymbalta. I saw Dr. Grubb yesterday. Haven't seen him in 3 years. I saw Beverly Karabin, too. I am so glad I went. Beverly is very knowledgable, and a good listener. my opinion is that she knows a lot more about POTS than the electrophysiologist I see locally. Before I even saw Dr. Grubb she prescribed new prescriptions and an order for a stress test. Dr. Grubb was wonderful as ever and he looked very well. My husband, Jeff was with me, and I told Dr. Grubb about Jeff's cancer and Dr. Grubb was very supportive of both of us. So I may, soon join you in trying cymbalta. First I am going to start taking cerefolin, the version of folic acid that can get to the brain. The will try cymbalta after a week or so. I also have a prescription for Mestinon. I can try that after the cymbalta. So the trials will take me a while. If anyone else has experience with Cymbalta helping them with POTS symptoms, please add to this thread.

Linda, Call the doctor. Something is going on and there may be an explanation for it, or at least part of it. At least it won't hurt to check it out. Hugs,