avais1

My eye doc checks my pupils regularly, as the Autonomic Nervous System controls their expand/contract response. Since your ANS is out of whack, it is not surprising that your pupils can go on the fritz.

Hi Miriam! Congrats, you made it through your first year. You are obviously a very important person, with much work to do still here on earth. Otherwise, God could have taken you that day. I am glad you are still here, because I got to hear your wonderful story, and it gives me hope. If you can keep going after all of that, then in good conscience, I will likewise keep pushing forward too. Thanks for the push ! I know it has been a hard and tough battle. I, too, have done the lovely "bathroom passout" while performing the "Valsalva Manuvoer" - embarrassing beyond all belief, but at least take a few laughs where you can get them ! Hang in there, we are all with you. You need to be proud of yourself for fighting back from death, which is the toughest fight there is known to everything on this planet. Remember that fight when you feel down, and weak, or others criticize your illness. How many of them would have fared so well? Your inner strength was what made you different. Don't sell yourself short, we have plenty of people who can do that for us !

Hello there from the land of 10,000 lakes! I am from Minneapolis, Minnesota

Guvna, There is a great book written by one of your fellow British mates that is wondeful for this subject. She made the cure for anxiety. It is called "Hope and Help for Your Nerves" by Dr. Claire Weeks. It is every anxiety psychologists bible, and it has helped me tremendously - I have been panic attack free for over 6 months after reading it over and over.

I have this all of the time. My eyes are extremely dry, and I use refresh tears gel to help them out. The autonomic nervous system controls the lacrimal glands in the eye, and dry eyes are very common for people like us. My Dr. also told me that the ANS also controls pupil dilation, so don't be surprised if you have trouble adjusting to light and dark.

You described me to a "T". I frequently wake up with these episodes. Dr. Low at Mayo had no explanation for them, but my cardiologist told me he has some POTS patients that this happens to. I just wait for it to pass.

I sleep with an incline pillow that is actually designed for GERD reflux. It works wonders. Every time I have tried to sleep flat, I get symptoms.

Bizarrely enough, Lexapro was the only one I COULD tolerate. I was told that it has filtered out a lot of the junk that was in the others. But keep this in mind - the stomache is the biggest manufacturer of serotonin in your body. Therefore, when you take an SSRI, you are going to have some issues in that area. The key for me was to stick it out long enough for my stomache to come around. It did, and it actually helped my IBS and Gastroparesis issues greatly.

I am right there with all of you. I am fine until they tilt me backward to wash my hair. After that, I have to sit up really slow and wait a couple of minutes before I walk back to the chair to get my haircut. Also, the flourescent lighting takes its toll as well. When I was at my sickest, I had to give up going all together. I developed the "Yoko Ono" look, which was not too flattering on me .

Hey there, my hat's off to you! At least you made it off the SSRI for a month and longer. That must mean you have had some healing in the past year. I tried to go off of the Lexapro last month, and dived after only 4 days . Hey, at least we keep trying, right? Take care!

Hi Ernie. Your post left me speechless. I can't express enough the amount of frustration I felt for you. I know it was painful, but thank you so much for sharing this story. It is good to have these things documented, so that one day, when we have a cure for this stuff, people will know the struggle of the early pioneers! It wasn't in vain, we have all learned from your experience. Way to go Ernie!

Hi Merrill, Your many posts are always such a comfort to me. I am sorry you are feeling so down. I too have gained a lot of weight, and I thought it was from the Lexapro. I tried to cut down on it, but POTS symptoms abounded and I was laid up in bed for two days so nauseated I thought I would die. I'd rather feel "normal" and look heavy than go through that! Anyway, I totally know how you feel. My thoughts are with you. Even though things may not seem so great now, there is always a new day waiting to dawn.

Hi all, I just wanted to share a personal tidbit. I know this may sound strange, but my girlfriends and I swear by this. Don't overlook the affect a "season change" can have on you. I tend to be more emotional, and even my cycle gets thrown off a bit with the four season changes. Also, I tend to get double whammied on the spring season change, as I am allergic to tree pollen. My allergies are going wacko, and the allergy meds crank my POTS up. Anyway, I am catching up on some posts, and I see some of you have the "blues" . My girlfriends and I swear that the season changes magnify this. Anyway, all I wanted to say is: Take it easy and slow, and don't be too hard on yourselves. Everybody deserves a break, especially us. Good, warm thoughts go out to all of you this evening.

I second what Nina says. Check with your doc. I saw Dr. Low, and he tried beta blockers on me, and they made me FAR WORSE. I am one of those that cannot handle beta blockers, and Dr. Low has me steer clear of them. But, each one of us is different. Check with a doctor.

Hi all, I think the article is good, but even this anxiety strung girl won't lose sleep over it. My philosophy has always been "When it's time, it's time". If I did drop over from SCA, it wouldn't be the worst thing - there are much more horrible ways to go. But instead of focusing on death, or dying, I focus on what I have while I am still here. Have I made a positive difference in people's lives? Did I come through for my loved ones? Have I made this earth a better place for being in it? Don't let your worries run your life. Don't worry about dying and death. Those things will all come to us inevitably. Focus instead on every minute you have with the people, animals, and nature that you love. And let them love you.

Hello, I use Lexapro 5 mg for IBS and anxiety. It was **** to get on it, but once my body got used to it, it was a miracle drug for me. It helped with the GI issues immensely.

Welcome Back Emily I am glad you are coming out of the woods. Many prayers to you for a full recovery.

I am not going to get into this "chicken or the egg" discussion , This subject is way beyond me. I just want to make one comment: I am not comfortable with making the word "anxiety" a bad word. It is a condition, it is a legitimate condtion, just as legitimate as POTS. My suggestion is for each of us to do our own research (and I see that many of us have) and form our own viewpoints. There are wonderful books and articles about the "mind/body" connection. There was one in particular that I read written by a Harvard Nuerologist called "Mind/Body Deceptions" that I felt was absolutely excellent. It discusses how Neurology and Psychiatry fields split apart in the early 1900's, and how recently, the two fileds have converged together again - PRCISELY FOR THE REASONS DISCUSSED IN THIS THREAD. Nuerology and Psychiatry can overlap. The other thing that concerns me, is that I see some hostility in this thread. I do not feel that we need to do this to each other. In the end, we all want the same goal: a cure for dysautonomia!!! We are here to help each other, and that being said, let's do our very best to be aware of each others feelings. Warm thoughts, and happy research to you all!

Oh too funny! I looked at the time badges on the replies - we must have been typing at about the same time . I think we both were even looking at the same (definitely similar) article . Oh well, better too much than too little info!

I am with you in prayers and spirit. We will overcome this someday. Your son does have an added gift: A mother who has been there, understands, and can guide him through this journey. You are very strong, even though you do not feel so. It is in times of trouble that one is actually strongest, because you are actively fighting forward. In times of complacency, we are just sitting there. Keep pushing forward, and when it gets too much "float" for awhile. The tide will turn, it always does. Just as the good times never last forever, neither do the bad. Wait for the tide to turn.

I get the bradycardia in the morning, before I get out of bed, after I stretch. My rate gets really slow, and I have to wait a second or two for it to come back to normal. I can get a little lightheaded when it does it sometimes, but I have always had this, so I don't really notice it anymore.

Hi all, Here is information from Dr. Grubb's review in 2002. There appear to many POTS variants, some named, some not. Forgive, the typos, I didn't have the link anymore, so I had to hand type. 1) "The largest group of POTS patients appear to have a mild form of Idiopathic Peripheral Autonomic Neuropathy (a partial dysautonomia) - in which an inability to increase peripheral vascular resistance during upright posture results in excessive compensatory postural tachycardia. Venous pooling appears to be present." 2) "A second group of patients may have a component of Beta-Receptor Supersensitivity. Many investigators have called this HYPERADRENERGIC Orthostatic Intolerance to describe this subset. Many of these patients complain of extreme tremulousness, and anxiety in addition to palpitations and tachycardia while standing. Serum catecholamine levels are quite high (norepinepherine levels are often >600 ng/ml). It is unclear whether this supersensitivity is primary in nature, or due to some secondary denervation supersensitivity. This excessive sympathetic activation is not appropriately attenuated by baroreflex mechanisms. While these patients SHARE a number of characteristics WITH those who suffer from the Partial Dysautonomia Form of POTS, THE HYPERADRENERGICS MORE OFTEN COMPLAIN OF TREMOR, MIGRAINE HEADACHE, AND COLD AND SWEATY EXTREMITIES. " 3) "Recent data have suggested a third type exists - those with Ehlers-Danlos III Syndrome. These patients demontrate reduced vascular reactivity and failure to constrict during upright posture." 4) "The term SECONDARY POTS is applied to those patients with a known autonomic disorder with preserved cardiac innervation depite peripheral outonomic denervation. This can be due to diseases such as diabetes, amyloidosis, Sjogren's syndrome, or Lupus. " Does this help you guys and gals?

Hi all! Since I share so many of my gripes with you all, how about a success story for a change of pace? We took our trip last week. We went to Ely, MN for a long weekend (4 days). Let me paint the scene: 1) Ely is very remote, and has only a tiny hospital (SOL in case of POTS, basically) 2) We were staying 15 minutes south of Ely 3) We were staying in a remote cabin 4) Our car got stuck in the snow, so we had to park it UPHILL ABOUT 2 BLOCKS AWAY!! So, there I was, in the middle of nowhere, with no real medical help available in case of POTS, I HAD to walk a 2 block steep uphill climb that was covered in 2 feet of snow, just to get to the **** car, whine whine . Needless to say, this all put me on edge. I snapped at my fiance, and told him I hoped he was prepared to carry me to and from the car if my POTS kicked in. Now for the kicker: I sat in the cabin, and thought to myself, "You can either sit here and worry yourself into a POTS/PANIC hole, or you can get out and enjoy the scenery". I decided if the attacks come - so be it...I will not live my life contantly being afraid of "What If..." I grabbed my stuff, and I went SNOWSHOEING!!! I MADE IT A MILE!!! My heart was pounding, but in a good way. I had made it to the point that I didn't care if it did. I was going to have SOME FUN!! The next day, I did it again AND BY MYSELF!! Granted, I didn't go as far as the day before, I was still tired and my fiance wasn't with me. But, nevertheless, I DID IT!!!! I had only one POTS attack on the first night, but I kept my head together, and it was over in 30 minutes. I was getting ready to reach for the Xanax, but then it stopped. I guess just knowing that I had the Xanax there, just in case, really helped me. I DIDN'T EVEN HAVE TO TAKE ONE!! For one weekend, I got to remember what it was like to be a "normal" person. It was a gift, I thank God for it. Keep the faith, all of you. You may think you may not ever feel "normal" again, like I did. Any maybe you won't, by our "old" definition of ourselves. I used to be able to snowshoe for miles. But I'll take this victory - and that is exactly what it is. Yes, my body can't do what it used to do, but it is still a good body in its own way. The fact that we are all still here, still going, still fighting on, in spite of the odds against us - that is a true victory of the human spirit. And that, my friends, can NEVER be taken from us; not by person, place, experience, or even Dysautonomia. Bless you!

Hi James For the anxiety part, I have the found the best book in the world. It is called "Hope and Help for Your Nerves" by Dr. Claire Weeks. It changed my life, and I am about as anxious as they come.

Nina, you are too funny! I am glad you were able to keep your sense of humor through this whole mess!