maryfw

It is always good to know that you are not the only one with weird symtpoms. Thanks for the responses.

mary

I sometimes forget I have NCS too. I had a really good afternoon last Thursday which means when I came home from work I did not go straight to bed. I had energy to wash the dishes.......woohoo. I felt so good and I thought man how good it would be to feel like this all the time, maybe it is a trend. Not. The very next day I had a really bad day. I woke with a migraine and then later that day was tachy with PVC's and a near syncope. I wish I could say that I could see it coming but sometimes it just hits you out of the blue and you are out somewhere and not prepared. Hope you feel better.

mary

I had POTS at least 7 years before my pregnancy but it certainly made it worse and has gotten worse with age.

mary

On Sunday evening I had to go outside from one building to another at our church. I bundled up really well before I left but I got really cold. Once inside I left my coat on and someone asked me if I was alright because I was so pale. When I left about an hour later and walked to my car, all bundled up, before I could get to my car I was shaking violently. Luckily my 17 yr old son was driving. I think I really scared him. I turned the heater on to 90 degrees and finally stopped shaking about 5 minutes later.

It has happened to me twice now. I really hate it and it makes me feel horrible.

mary

I remember after the birth of my first child the fatigue getting much worse and always always complaining of being thirsty!! Guess I was dehydrated.

mary

I am so sorry you are going through that. Sometimes having coffee makes me nauseas. Maybe shivering is one of the "things" we do when we are having a bad reaction. This past week when I got cold, I have had a couple of episodes of shaking violently for several minutes until I could get warmed up. Not fun when you feel bad. Hope you get better really soon.

mary

She had O.I. To someone who has had great difficulty with pregnancies it is not a definite answer but a definite possibility. When you think about it, it makes since. When my bp drops, then my body cuts off blood supply to what it deams as unnecessary parts of the body........digestion, etc and if the blood flow is cut of to the baby then that could be life threatening or at least cause complications.

mary.........Not saying this is what caused my problems but no doctor has ever been able to offer me any explanations other than "your body has had all it can take and therefore the pre-term labor".

mary

Yep...........I teared up too...................

mary

It was so powerful to see someone like us on TV. I was really touched. I miscarried my first child and then went into labor at 6 months with both of my children. Now I can see that there is a great possibility that my NCS contributed to these problems. I have watched mystery diagnosis before thinking that one day I would see my symptoms on the show before I new what I had...........and now I did.

mary

I wonder why the doc bothered with the test in the first place is POTS is an "emotional disorder".

mary

Firewoman, that is very interesting. I know it is POTS related and I am on my 4th day of Prilosec so I will see if it helps.

mary

I had pre-term labor at 28 weeks with both of my pregnancies, bed rest and then at the end ........high blood pressure.

2 healthy babies but very difficult after 28 weeks. Delivered them both full term.

mary

I had my gallbladder checked a year ago and it seemed fine.

mary

Oh well. Maybe I will find an answer at some point.

Sometimes I get really really bloated and really really belchy. Once I get this way the only way I found to help me is to............................sorry............throw up. I started taking Prilosec 3 days ago but have not seen a difference yet and dont know if it will help me anyway. I get nauseas, bloated, belchy and then cant eat and then get sick.

I have had this weird symptom all my life. Any ideas on what to do for it?

mary

Didnt mean to imply that it was a "rule" for everyone. Just a figure of speech so forgive me if I caused any confusion but my doctor has told me no caffiene at all so for me I was breaking my treatment regiment as ordered by my doc. I did not know that so many others use coffee in the morning but it sure is good to know that I am not the only one and that it is helpful to some. That is why I love this forum, I ask or comment and others tell me that is works for them or not and give great advice. One thing about email etc is that often people can misinterpret tone or intent, so we do the best we can to be clear but sometimes we miss the mark.

Thanks to all

mary

Hoping to get a script for provigil but in the meantime,,,,got to do what I got to do to stay awake enough to keep my job and function.

mary

I have been so tired and fatigued. Now taking ambien to sleep but still waking up through the night. I want to be on provigal but have to wait to see the sleep specialist in March. I have noticed through reading posts that provigil is a stimulant so this morning I thought, what the yeck. It has helped some.....will see later today if I have a backlash from it.

mary

ps...........It was gooooooooooooood.

My husband has had fibro for 20 years now and takes Lyrica for neuropothy in his feet. It helps.

mary

Rachel. What were your symptoms and did you have any tests from the sleep doctor that diagnosed you with a sleep disorder?

mary

I am seeking advice about Provigil. My cardiologist sent me to my primary for fatigue and my primary is sending me to sleep specialist. What kind of doctor prescribed Provigil for you?

mary

Ok here is one to make you laugh and also a lesson for everyone to learn from me. I told you on Friday that my doc had called in my sleeping meds and that I had slept for the first time Thrusday night. Well on Friday around lunch time I took my midrodrine (2 - 5mg pills) and within 30 minutes I started feeling really wierd. Really wierd. I thought oh my god what have I done. I looked in my purse and I had taken 2 sleeping pills and I was at work. My pills are almost exactly the same size and color as my midodrine. It was awhile until my husband could come get me (he was flying into town) so I made a fool of myself in the meantime............I looked and acted like a drunk women..

So lesson learned, if your doctor prescribes a sleeping medication, DO NOT LEAVE IT IN YOUR PURSE OR NEAR YOUR REGULAR DAILY MEDICATION.

MARY

If it increases me two cup sizes...........where do I sign up.

mary

My doctor called in Ambien for me and I got my first good nights sleep in I dont know how long. We will see how I feel later today. I am actually thinking clearer. wow what sleep can do for a body. Keep your fingers crossed for me.

mary

My cardiologist didnt think it was my midodrine. I dont even ususally take a dose in the evening. I guess it is back to the pulmonologist.

mary

I am just sooooooooooooooooooo tired.

mary

Ok. I called my cardiologist and left a message with the nurse. After that I looked up the side effects of midodrine. My doc increased my midodrine about a month ago and that is when my wierd dreams starting happening. The side effects include " drowsiness, trouble sleeping and leg cramps". Might have found my answer.

Now what? My ncs was doing so much better with the increase but I cant function like this. All I want to do is take a nap but when I wake up I am just as tired as before. When I lie down I feel all keyed up and it is hard to relax.

mary