icesktr189

That is great! My mom is just like you with it... she slept like a baby the first night. She had a clostomy bag and it kept bursting out every couple hours because her stomach would dump and the first night she took LDN it stopped completely and now they removed it and she just has a j pouch. It really is a miracle drug for some people. I just didnt want people to get there hopes up with dysautonomia because its a hit or miss with it. But im glad you are doing great on it! I hope it starts to help me out again. I had to stop because I had my tonsils removed before, which is the only downside if you are on an opiate :/

Oh sorry what I meant was unless you have an autoimmune issue contributing to your POTS, it wont really help the actual POTS symptoms. It definently helps fibro, crohs, MS, those kinds, but when I took it, I notice an increase in energy and improved mood, but the same POTS symptoms. It also helped my IBS a ton and after the insomnia phase went away, I got an awesome nights sleep!

I tried to get to 4.5 but the insomnia was terrible! Did you have that issue? I got to 3.5 and did okay but I was afraid of it coming back.

I have a lot of friends taking it for CFS and its a 50/50 chance. Some do absolutely WONDERFUL and almost go into remission with their CFS (they still have some POTS symptoms) and other it doesnt do too much. However, it is such a safe drug, especially at those low doses that it wouldnt hurt to try. My mom asked Dr. Goodman and he wont prescribe it He seemed interested, but most dont know exactly how it works and dont want to risk anything.

You could load some up on photobucket and post the link

Oh and start LOW. Recommendations are from 3 to 4.0 mL but start at .5 and see how you do. The first week was hard but eventually I did fine with it

All it does it boost endorphins during the 4 hour peek at night.. which regulates your immune system. I am starting it back up next week! My mom has been taking it forever... however, if your POTS is not autoimmune related, it probably wont help. My moms friend with MS is completely symptom free from taking it. We get it from a compound pharmacy because most doctors wont prescribe it.

Is it normal with the "dizziness" to not be able to focus? I was trying to talk to my step dad today, and I cant keep focus on his face. I keep looking all around because its too hard. This happens all the time and its embarrasing.

Actually in 2007 also, mine went to 240 something.. I was in the ER at the time and I just felt absolutely terrible ( I was trying to drive my car for the first time in months and wasnt diagnosed at that time and ended up in an amulance). They kept asking me how much cocaine I took and I kept telling them none, so I have to wait forever for a drug test to come back when they finally believed me. Thankfully I was diagnsed a month later

well I havd orthostatic hypotension and the third trimester was terrible. I couldnt stand for nore than a couple seconds and crawled to the bathroom.. ugh making me rethink having another in the future for sure lol.

Yes, believe it or not I have actually passed out laying down. I was preggo at the time, but my POTS was terrible. For me, my hr drops in the 20's to 30's when I sleep and I feel terrible when I wake up.

That makes sense. I am not sure if I have hyper though. I have tons of the "flight or fight " responce feelings, but my bp never,ever gets high. I am lucky to hit 110/90.

I have heard that too but also heard that with the CFS, it was actually more autoimmune issues going on, hence the swollen glands and fatigue.

For me, hearing loss is very common pre syncope symptom. Actually, that symptom is the last one to alert me I am going down. I hope he starts feeling better! It is scary when it happens.

I have the same thing. I will fall asleep at 7pm (right when my daughter does) and wake up at midnight. I will feel great and watch movies until around 3 am...weird stuff

Sinus tachycardia Not flaring Laying: 20's to 80's ( I have bradycardia too) Sitting: 80's Standing- 120's Flaring Laying:90-100's Sitting-100's to 120s Standing: 120's to 200

It sounds like they dropped your bp way too low ( I couldnt tolerate them either). You then had adrenaline surges to bring your bp back up. Have you tried them with midodrine or florinef? That was the only way i could take them.

I would apply for disability ASAP. I applied in Janurary of this year (2011) and still havent heard back from the reconsideration stage. It takes forever unfortunately

Did you have POTS before you pregnancy? I have heard of it being different for women who develop POTS during a pregnancy. Mine was about 2 years after I was already diagnosed, so it could definently be a different situation for you! Dont give up hope, but make sure you have everything planned for the worst just in case

If you look for pulmonary hypertension, make sure you get the heart cath. I had two ECHOS that showed I had it, but they told me that its not an accurate assesment.

As soon as I sit up in my bed the vertigo starts. I cant even get out of bed until 9 am or I will pass out. My body just wont do it anymore. I feel completely drunk in the morning and can only drink water until around 1 pm. I am sure my blood sugar is low, but its better than syncope. I cant function until around noon. I just lay there with my eyes shut. I do the best about from 1 pm to around 7pm. After than I am not really as dizzy, just tired and can tell I over did it. I get my huge burst of energy around 11 pm. I cant sleep until around 1 am. Gosh my life stinks lol

Also take into account your meds your on... for me I dont feel comfortable taking midodrine or florinef while pregnant... not sure if you are on any

Ill be honest with you... Before pregnancy my POTS was controlled. I did okay during the first trimester and the second, the third was pretty bad. I had about 5 amulance trips because I would pass out and i would be out for minutes. I would also go completely numb everywhere. Birth was tough, but I did okay postpartum. By 6 months PP I was almost bed bound again. My daughter will be 2 in March and I can no longer drive or work and have applied for disability. For me, it definently made me way worse, but I know there are a lot of people that it didnt really affect (they went back to their "normal pots" after pregnancy). Its one of those things where you dont know how you are going to do until you experience it. I eventually will have a second child, but I want to be financial stable enough to where if I become bed bound I will have someone 24/7 to help with raising the kids. Its a scary thought for me

yup I have had 3 positive ANAs and.the rheme never figured out what it is...i read something like 50 percent of CFS patients test positive at any given time.

I heard sometimes it is just a random event. My friends mother had it happen and never had any other health problems before or after it. I hope she gets better soon!