pat57

have you tried Neurontin?

Did they check her potassium level?

The Drs don't realize that the issues can be near constant. I have found being well rested is very important esp for the fatigue. Do you work nights, or have anything preventing you from getting 8 consecutive hours of sleep every night? Also compression stockings help me a great deal.

I think the misdiagnosis's are part of the process. Like a process of elimination. In some cases the Drs. did mess up, but certainly there was no malice. I was very sad about my inability to mother well, and I have still not gotten over that. Like somebody else said, what choice did we have? The sun comes up and you tend to the next days business as well as you can.

I have a stick shrift and don't believe that helps. I do wear compression hose and stamp my feet or rock my legs back and forth intermittently, on long trips. I believe doing that helps. However my opinion is not what matters. After 4 years without a license, the Dr. finally approved me to drive because during my forth TTT my BP bottomed out at ?/52 instead of 0/palpable. He felt 52 was high enough to remain conscious while seated. There was also a study of NCS patients on Norpace (which I'm on) and none passed out driving during the study.

http://lib.bioinfo.pl/pmid:16361607

HI, I have just 2 things you might ask about. One is have they checked her hormones, could they be fluctuating? Also I would inquire whether sweating is a sympathetic or parasympathetic function and consider meds that block those receptors. I would search Pub-med also if I was you. www.pubmed.gov good luck

How long were you sitting when you felt it? I've been told sitting 20 minutes can cause blood pooling and an NCS event. Also tho, you can have started the event previous to sitting and it culminates while sitting. Thirdly , that sitting will not start the event except when you been sitting a while. This was important information related to driving. It was safe to drive as long as I was feeling well when I got in the car, and was driving less then 20 minutes.

I think crying can be an Aura of epilepsy. also, I have experienced what tearose talked about. Having been wild a couple years, after I got clean and sober I would cry for hours with no conscience provocation.

I was DX with pseudoseizures and refereed to a psychiatrist . The psychiatrist DX epilepsy and put me on Carbomaziphine. The carbomazipine gave me colitus. The psy. said take imodum, I said no, he said get another Dr. I went to a neurologist who sent me to an EP. And Walah! This took 4 years and I was without a drivers license during that time. I made no attempt to research. What ability's I had were spent mostly doing laundry.

If your son sees you beat yourself up for that, he may very well think its his fault, so you don't want to do that . I believe you have only one acceptable choice and that is to believe it occurred this time - safely- to prevent one time with worse results. In other words to help you avoid the same mistake in the future.

Hi, I wanted to say more=- but my phone rang- and after that I had to go to work. But don't rule out the partial custody as being ok. Most Dads manage with that. Did you see Misses Doubtfire (a movie)? Well in it the ex disguises himself and becomes the nanny. My connection with that is that he may need a babysitter sometimes and you will see them more. Advice during a time like you are in isn't going to help you feel better- today. I think your signature line says something about hope. It is realistic to hope that things turn out ok. And you can look forward to that time. Full Original Serenity Prayer by Reinhold Niebuhr (1892-1971) God, give us grace to accept with serenity the things that cannot be changed, Courage to change the things which should be changed, and the Wisdom to distinguish the one from the other. Living one day at a time, Enjoying one moment at a time, Accepting hardship as a pathway to peace, Taking, as Jesus did, This sinful world as it is, Not as I would have it, Trusting that You will make all things right, If I surrender to Your will, So that I may be reasonably happy in this life, And supremely happy with You forever in the next. Amen.

Do you have a lawyer? Look into legal aid if you need to. I used legal aid, I was given 3 names and was allowed to choose between them. My husband told his lawyer I was a drug addict, alcoholic, mentally ill. None of that was brought up in court. (I wonder why). Get a lawyer, also ask neighbors about being a character witness. Do not let him know what your doing. Let a lawyer tell you how to proceed. I know the pain is horrible but giving up is not an option. XXOO

I've been doing that quite a few years now. It started when my boss moved and I saw how too much stuff was a big burden. Then my mother went into a nursing home and I cleared a lot of her stuff out. I didn't want to wait til I was as old as they - and unable to do it. So I've been "purging" for 8 years. This August I put my house up for sale and worked esp hard to declutter. The house did sell and now, like you, I will be down sizing. Major issues for me are yard work and stairs in the house. I can't wait to be in my new clean space with so much less work needed to keep up. Good luck.... How long have you been in that home?

I have been using Ambien as needed for years. Exclusively for nights when I work til 1am and need to be up the next day ,early. I would be 3 days recovering from the lack of sleep if I didn't fall asleep quickly. Been there done that........

Me too Angela . I've been reading this thread and concerned for both of you.

thanks, Obviously then, not all pacemaker patients need Coumadin, which is what concerned me. good news

thanks, makes sense

thanks Flop, My Pharmacy said they are not making it anymore- the brand and the generic. Another patient t at my EPs told him the same. We could still be misinformed tho. My EP wants me off it now because of the side effects and might let me stay on if the tests he ordered come out good. I now have right bundle block and I think he thinks the Norpace caused it. My PCP would definitely not order the Norpace if the EP says no. Sooooo I'll have to let things play out. With this process I'm starting to rethink that Norpace is the best option. Most especially I was 2 1/2 hours late this am taking it and I did not collapse. Normally I take an immediate release Norpace if I'm the slightest bit late. Not today, I took the CR which takes 3 hours to get up to levels. So far so good........... The SNRI is helping me BIG time. For the first time in 7 years I can stand still and not get symptoms. I posted elsewhere that Pristiq is helping my NCS and OH. I have been totally dependent on the Norpace for 7 years and it's hard to change that thinking. But it might be time. I appreciate your interest and help tho. I'm getting separated and taking my "mildly" autistic 13yr old daughter Nov. 4. So I'm feeling very vulnerable right now.

First I should say, I have OH and NCS- not POTS. I have tryed paxil, Prozac and Zoloft. They may have helped a small amount but the side effects were bad. I am on Pristiq now, a higher dose, but number one; I can sleep and number two; it helps me a lot with symptoms.

thankful, I've experienced that for years also, but to a lesser degree. To stand still made me feel weak-heavy eventually dizzy and collapsing. I could walk forever. I was put on Pristiq and now I can stand still. Its an obvious benefit. Pristiq increases neuropinefrine. I checked your profile and saw that you have elevated neuropenfrine upon standing. I'm sorry to make this about me but I wonder if you can explain the connection of neuropenifrine and standing still. thanks..........

Do you have a pacemaker morgan?

Well, I think a pacemaker is what I'll need because they are taking Norpace off the market. Been on it about 7 years. Back then I was offered Norpace or a pacemaker. The Norpace worked great. Now, since I have had Hepatitis C for over 30 years I don't think I can take Coumadin. Because my liver doesn't function normally and because my PT is not normal either. Don't know how things will play out, but as I mentioned on a different thread I'm worried about being able to work and having seizures in front of my daughter. It seems to me that the pacemaker is guaranteed to prevent bradycardia, which is my problem. My EP is running tests and then will offer his opinion. He prefers med changes- I think. thanks again

thanks

Yes, much worse.