lavender

since getting sick years ago I have constant or almost constant pain that moves around quickly. It's usually just a tiny area that hurts for a few seconds or minutes then moves to a different area. The pain is either like a pulsating pain, usually just the size of the area of a quarter, anywhere on my body. It feels like it's vascular....but who knows. Then I get a sharp pain that feels like an electric shock. It usually just happens once on a tiny spot then moves to another spot. Sometimes the pain will stay in one area for longer. Sometimes it's a shooting electrical pain, moving up my arm or leg....usually starting at a finger or toe tip. Sometimes this makes my arm or leg or other muscles jerk...either a tiny jerk or a strong one. Sometimes the jerk is in my whole arm, sometimes just a finger. My muscles jerk a lot without the shocking pain as well. along with the traveling pain I also get traveling areas of tingling anywhere. I'd say most of the pain and tingling happen somewhere in my hands and feet, where I am having lots of visible vascular problems (maybe raynauds or vasculitis with some ulcers and sores), but it also happens anywere on my body. I've also noticed that my skin sometimes is sensative to touch. Like if someone puts their hand on my arm, it feels like my nerves are going crazy. it doesn't really hurt, just feels weird and uncomfortable. Any of this happen for you? any thoughts?

OLL, what is serine? Are your adrenal issues a result of you orthostatic issues? Do the high adrenal levels in the evening affect your sleep?

Maxine, I'm glad your appointment with Dr. Tinkle went so well. It's so huge to have a doctor who doesn't make you feel like you are crazy! I'm glad you feel a bit of hope. I'm sorry you've had so so much heartache in your family. I can see why all of this is really hard to deal with. Hang in there!

This may be nothing, but I'm noticing that after I focus on something, near or far, out of the sides of either eye, I get really dizzy. The dizziness doesn't last very long. I don't have any trouble with my vision, I just get dizzy after looking up or down or to the side with out turning my head. I'm not sure if this is perfectly normal, no big deal or worth telling my doctor.

OLL, Do you know why your numbers are off? It's interesting that both tests showed a similar pattern. Learning what you did about your hormone levels, was there anything you did to treat it? Is there anything you can do to bring your adrenal levels closer to normal?

I tend to feel worse in the morning and gradually better throughout the day.........unless I over do it. usually around 9 or 10 in the evening I start to feel my best.....when I should be unwinding.

I guess saliva testing is the best way to test my adrenals at home. Has anyone here done any saliva testing? Was it helpful? I actually ordered a saliva test a couple months ago. It looked at different hormones, including adrenals 3 or 4 times a day. I havn't used the test yet. i was hoping I could get my doctor to request the test, because then it would be covered by my insurance. When I talked to him about it though he said he didn't think it was necessary and didn't put much stock in saliva testing. He said he just isn't familiar with it and the numbers wouldn't mean anything to him. I'd still like to do it, but I kinda dropped after talking to him. He tested my adrenal levels a few months ago. it showed they were high. I then did a CT scan of my adrenals and they were normal. My doctor said he didn't think it was anything significant because my CT looks good. He might be right. Maybe I was just uptight causing my adrenal level to be high. I ran the test after an appointment with him, which always makes me stressed out. But I'd like to look a little further since I have years of unexplained severe fatigue. I'm not sure how best to do that though, or if there is even any point, since he thinks my adrenals are probably fine. any thoughts?

My thought is the same as Sophia's. 10mg seems really high. I use melatonin some of the time. I use 1mg or just a half. For me, that is usually enough, sometimes it's not. I try not to use it every night. I dont want it to effect my body's own production of melatonin. This is what works for me. Your son's situation may be totally different.

Do you know, is there a way to test your adrenal levels at home? Anyone heard of such a thing? I am currious to know what my levels are on a good day verses a bad day and also what they are when I first wake up and when I go to bed. I wonder if it's possible that my adrenal levels have something to do with my rough sleep or other symptoms.

I used a TENS unit years ago when I was in Junior High, for neck pain. I guess I dont remember what I thought of it or if it helped at all. For me it was too hard to deal with while I was at school. I think I had it turned up too high and the electric shock feeling was distracting. One time it fell off durring class, and was shocking me everytime I moved. I couldn't move to turn it off and was trying to motion my friend to help me. I ended up getting in trouble to being disruptive! I couldn't explain to the teacher what was going on because it was really hurting....and I didnt want the class to know about it. Now looking back it was a funny moment. I'd say it might not hurt to try it. Just don't turn it on too high, I like did.

hello I have a light box. Living in alaska, where we have really short days in the winter and lots of long dark days, my psych recomended I get one and use it. Mostly I have trouble with my sleep cycle shifting later and later and my body not wanting to fall asleep. Using the light box at the right time, regularly is supposed to help with that. I was very sensative to the light therapy though and wasn't able to figure out how to make it work without it changing my sleep too much. After using it for a couple weeks I was wanting to fall asleep and dinner and wake up at 3 in the morning, rather than fall asleep at 3. My Mom is now using the light box. She has a hard time with the dark winters making her depressed. she likes the light box for, if nothing else, the wonderful BRIGHT light. My doctor told me that they are finding that a lot of people who struggle with SAD are in need of Vit D. HE told to take at least 2000mg a day.

I've never been on compazine, but I do take 10mg of amitriptyline. I take it for pain and sleep. It's supposed to help with both. I'm not sure how much it does for me. The first night I took it I slept until 3 in the afternoon! Now, after years of being on it, I'm not sure how much it helps me with sleep.....still have major problems in that area. I do take 20mg when I'm having a worse time sleeping and it helps some. I'm not sure what it does for nausia. I don't have ongoing trouble with that. I did have a lot of nausia at one time but it was because of some meds I was on. I didn't notice the amitriptyline helping with it though. I used promethazine, for the nausia. It helped quite a bit. for me because I use the amitriptyline for sleep, I've found the best time to take it is at dinner time.

Hi Rachel, How was your echo? Do you have an upcoming appointment with Grubb at all? I can't remember if that worked out at all? does you doctor have any ideas? could he talk with Grubb? What have you tried for your sleep? Would it be worth retesting for the antibody or are they pretty sure thats not an issue at this point? wish i could help!

Lois, I have to say, I agree with what you said....at times I am too sick to feel bored! Its the inbetween times that are the hardest for me.....not so sick that I don't want to move or feel like doing anything, but sick enough that I can't be up and around....I feel restless and frustrated but any little thing makes me feel gross. I do a lot of crafts....knitting, beading, painting and so on. I keep piles of projects all over my house. I do best emotionally if I have a project that I can get lost in. It also helps me feel like I'm accomplishing something durring the week, when I'm too sick to do much. and it keeps me down on the couch and not up over doing it.

I get these jerks too. It usually happens if I'm having trouble falling asleep. I'll lay there for hours then out of the blue my whole body jerks really hard. Some times it really startles me. I usually feel wierd for a second before it happens. For me, once it happens I can finally fall asleep. After laying awake for hours, once I jerk hard, I know I'll be asleep within 15 min. I also get these durring the day sometimes. I'm not sure what it is. It may be what's called "sleep starts" from what I've read on the net.

One of the main things I deal with is an overwhelming fatigue. I always feel like I struggle to accurately describe it to doctors. It's more than just being a little tired all the time. It frustrates me when I can't explain it in a way that really descibes how it feels. For others here with overwhelming fatigue, how do you explain it?

Hi Sarah, My heart goes out to you. Yours sounds like a pretty serious situation. I wish I knew how to really help. I'm very new to POTS though. I'm still full of questions myself. I am your age. 26. I can so relate to your frustration with doctors and the feeling of having to wait til you can find someone to help you. It's so frustrating to deal with this when you are so sick. It's important to keep looking til you find someone you like and can work with. easier said than done, I KNOW! I'm still looking too. maybe someone here can help you. I know the feeling of having a hard time functioning day by day.

thanks so much for all the replies! sounds like sleep issues are very common in POTS. Sheridan, I did have my cortisol tests recently. It was high. I did a CT scan and the adrenals look fine. Other tests don't show an adrenal problem, so my doctor is thinking it's no big deal. Said we could test it again next year. It may be no big deal, but I was a bit frustrated that he isn't interest in testing it more often. I'd kinda like to know if it's a chronic thing or if it was just high at that time. I do use melatonin, like you mentioned Stevie. I have a lot of trouble sleeping the week before my period. I am awake til about 3 on those nights. I started using melatonin just on those nights and it's helping a lot! I only take a 1/2 mg. with it I can be a sleep by 12 or 1. It doesn't seem to help though on the nights of "wired tired" or when my heart rate is high, even at higher doses. I did use progesterone cream for years. It helped a lot with the hormone week of insomnia. It slowly stopped helping though resently. So I am giving it a break and using the melatonin. I just need to figure out what to do on the other nights, when my body is overly tired and can't mellow down.

my fever is down!!! it finally broke this morning. It's a little over 99 this afternoon. but I feel way better than yesterday, so I dont think I have an infection. My heart rate is closer to my normal resting rate now too. I think it was just how my dysautonomia reacts to a fever. I didn't hardly sleep the last few nights though. it's nearly impossible to sleep when your heart is pounding hard and fast.

I somehow ended up with a cold and fever........lack of sleep maybe? my temp was a little over 102. took ibuprofen. It's down to 101. my heart rate is staying between 125 and 140, laying down, not moving....watching BORING soaps. i can feel my heart beat all over my body. My lap top is sitting on my belly, moving to the beat! it goes up if i move around or get up. I called my doctor because i am on an immune suppresant and need to watch for infection. he wondered if hr is high because of possible pneumonia.....? said to go to the ER tomarrow if no change. does you hr do this when you have a fever? could it be part of pots or something else? thanks blaaaaaaaaaaaaaah this isn't fun

My doctor calls it "wired tired." Good description! I've tried a few sleep meds. Lunesta, sonota and rozerem. They have made me feel drugged durring the day and over time don't help with my sleep or make it worse. I wish there was something I could take just on the wired nights, that would kill off all the adrenaline and relax my body. What does phenobarbital and klonopin do for you, Sushi? do they give you hard side effects? I havn't tried Ambien. Is it hard to get off of once you start?

I have quite a bit of trouble falling asleep and staying asleep. One thing I've noticed that makes this worse is when I push myself durring the day and do too much. I'm not sure if this is true, but what it feels like is I start to run on adrenaline. When i go to bed I feel horrible....beyond exhausted, sick, and chilled. I can't fall asleep for hours. Even though my body is wasted, it feels like it can't unwind because of the adrenaline. Can anyone relate? I try to avoid getting to this point, but it happens SO easily and some days can't be avoided. Have you found anything that helps with sleep at this point?

hi. I have not used nitroglycerin for chest pain. I've tried both nitroglycerin paste and patch on my feet for severe raynauds. Both of these forms of nitro made me feel horrible. bad headache, crazy fast heartrate, nausia, dizziness, and feeling like I was going to pass out when not laying down. Nitro is a vasodilator which means it opens up your capillaries. It makes total sense that it would make you feel worse if you have dysautonomia, by making more blood pooling in the capillaries.

Hi Rachel, I don't know much about birth contol, and nothing about how is effects dysautonomia. But I do use progesterone cream, so I'll share my story. Because of my illness, my periods are irregular at times, especially when I'm really sick. A few years ago my cycle stopped for a year so my GP gave me a birth control to see if it would normalize my cycle again. I used it for a month. For me, every day I was on it I was very very sick. It made me feel like I was in a awful flare up of my illness. I went off it and my cycle was still crazy. My Mom was using progesterone cream for premenopause so I decided to try it. For me, I had none of the reactions to the cream that I did to the BC. It doesn't make a huge difference in my illness though. I have less PMS with it and I sleep alot better with it. I have a LOT of trouble sleeping the week before my period, the cream makes a big difference in that. My periods have become a lot more normal using the cream, but I've also figured out some other factors that were playing into my irregular cycles. The thing with progesterone cream is, if you are still ovulating, you can't use it all the time. I use it after I know I've ovulated....or if I'm irregular...after I SHOULD ovulate. then I stop using it at my period. For me, I've found that any form of estrogen makes my illness flare up very quickly and very bad. There are some foods, herbs and chemicals that act as estrogens in the body. I've found that these make me really sick too. So I avoid them. I'm not saying this would be the case with you or anyone else. It could be that if increasing your estrogen levels helps you, you could play with increasing foods in your diet that have phytoestrogens in them. You could also try a phytoestrogen cream. For me I'm more comfortable with a natural form of hormone.....progesterone or estrogen, rather than synthetic. Do you notice you feel better or worse at different times of your cycle?

Thanks this helps me. I'll just keep an eye on things. I have my thyroid levels checked every three months, so I'll catch any changes.