futurehope

Migraine, Louby, If my memory serves me correctly, I read somewhere that an OVERGROWTH of Candida Albicans in your gut (it normally lives in there) can mimic drunkeness. As for testing for overgrowth and treatment, I do not know anything specific, but it was ALTERNATIVE doctors that seemed to understand this concept best, not regular doctors. They use powerful anti-fungals like ketaconazole, nystatin pills to kill the excess in your gut, and you also follow a low-sugar diet, which contributes to overgrowth.

This must be the season. I've seen several people on this post saying they are experiencing depression, and I must say that I, too, am in that boat even though I don't normally get depressed. At least we all recognize what's going on and talk about it. I will stay focused on the fact that feeling depressed today does NOT mean I will ALWAYS feel depressed. This is temporary even though it doesn't necessarily feel that way. The one thing you can be sure of with anything to do with dysautonomia is that things ALWAYS change. Here's to happy days ahead for us all! Aprilmarie52, I've just had to give up on going back to my job. I've finally come to the realization that there is no way I can maintain employment, and that realization has sent me into the pits at well. It's a big adjustment for me since I've been working my whole life. But I will not give up hope that at some point I may be able to return to some form of employment, or volunteer work. Just know you're not alone. Good wishes your way

Sak, I really appreciate you sharing. I especially find it interesting that you determined that milk, wheat and sugar contributed to your problems. I've seen other posts discuss how wheat can adversely affect people and that it does not necessarily show up on tests - the true test being - eliminate it from the diet. May I ask WHERE you came up with the idea of elimimating sugar, wheat and milk? Just curious. Because of your post, I'm becoming more and more motivated to eliminate wheat from my diet. I already pretty much avoid sugar and milk. It's best that we remain proactive in our own healthcare.

Also, Smart water, in the health food stores has electrolyes without sugar. Also, the expensive Pelligrini or another Italian water (can't remember the name) in some grocery stores have electrolytes naturally. They're spring water and have natural carbonation. I usually shake them up to get rid of the carbonation.

On more than one occasion I've mentioned to doctors that "I'm having a bad day and my POTS is going to be worse today," and they responded, "Good. We want to see a poor day." My conclusion from those encounters was that they realized you could be having a "good day" (and maybe do all right on the TTT) but they preferred to see a bad day. I took that to mean someone could still have POTS even though they were having a "good day" and managed to do okay on the tilt. Does anyone else have a thought on this?

Laila, I emailed you a response. Nancy

Laila, Is it Dr. Khurana by any chance? He's my doctor.

I just want to let you know that when I took Tenormin (atenolol), it made me depressed. Beta blockers can do that and they can also make you fatigued. If your sister is worse with the medication than without, maybe she should reconsider. On the other hand, if it is helping her POTS, then maybe she will need to take an anti-depressant so that the beta blocker can be continued.

Yay!!!!!!!! You go Girl!

1. Nancy 2. 52 3. POTS 4. 51 5. Baltimore, MD 6.lightheaded, dizzy, pressure in chest, feeling sick, unable to think, feeling warm, extreme fatigue, insomnia, poor reaction to normal stressors, no stamina, GERD, interstitial cystitis, GI gut dysmotility 7. insomnia, poor reaction to normal stressors, poor stamina, GERD, gut dysmotility, fatigue 8. florinef, midodrine, drinking lots of water,timolol, raising head of bed did not help POTS 9. some exercise (weights on the floor), some walking, decreasing sweets in the diet, positive outlook and not feeling sorry for myself, accepting was is and going on from there, being aware of my limitations, but pushing the envelope just the same, not giving in, being aware that I'm here for a purpose

Denabob, What test do they do to determine how much fluid you need?

Dawg Tired. What a beautiful website and what gorgeous pictures. You guys are so talented in taking the pictures, putting up the website, writing captions, etc. I haven't the foggiest idea how you all do that stuff. When I asked my computer programmer husband how you all make up the websites and put them out there, he just said, "you figure it out". Well, I guess I don't have the mind to "figure it out". I certainly hope you and your husband soon get what you are asking for from SSDI. It is such a discouraging process. Best wishes to you both.

What do you all mean by "standing order of IV fluids"? What is in the fluid? Are you in the hospital when they give it to you? How much do you get and how long do the "good" effects last from it? Thanks.

Thanks, Geneva. Once you have been diagnosed (or have symptoms of) dysautonomia, you certainly have to come to terms with the fact that YOU consists of more than your "personna at work". We are NOT defined by our work. We just happen to work in a certain field or perform certain tasks. That is one lesson I've had to learn. Whether I work or not, I am still a valuable human being. That was a difficult lesson for someone as independent me.

Denabob, You've given me very encouraging thoughts. I am a fighter too and I'm also hoping that if they see in PERSON how difficult it is for me, they will then KNOW what it's like and that I've given it my best shot. I figure it's a win-win situation. I win if I'm employed, I win if they realize my disabilities and give me SSDI. I cannot tell you how supportive and caring and wonderful everyone is on this forum. It means so much to know there are other people out there who UNDERSTAND. I'm so grateful for that. Nancy

Runnergirl, I'm so glad you explained it as you did, "an abnormal response to normal levels of adrenaline" because that's EXACTLY what it feels like to me. I do not get the tremors, but I DO react abnormally to everything normal. Normal levels of activity wear me out, anything out of the ordinary wears me out, a change in routine, an unexpeced visitor, less sleep, being hungry, an illness, a new pill to try, you name it, I overreact. Now I know how to explain it to somebody who doesn't understand. I certainly think this has something to do with my ability to get fatigued under "normal" circumstances. Is there a physiological basis for this? Can one be tested for this? For some of you that are on benzodiazepines (like xanax and ativan), I've been on them in the past and I did notice after awhile of being on them (usually about 1 month), I did get "rebound" anxiety reactions which would go away upon taking the pill. I also noticed that I'd need more of it than I was taking to "do the trick". Now I'm NOT saying to discontinue your pills. I'm sure those pills would help me feel better too if I took them. I'm just mentioning this IN CASE you are having the same reaction as I used to when taking them.

You're all so sweet! I honestly did not feel I had a choice. "Just go home and forget about it." was not a choice in my book. I have a footnote. My disability attorney has just told me that SSDI gives a person a "9-month" trial run to "see if they can work." The upshot is, I'm trying. If it works out for me, great! If it doesn't work out for me, great too, as Jackie said. I've tried.

Hey, Nina, You're an inspiration. Thanks for the good thoughts.

Yay!

Thanks, Denabob. You're so sweet!

EM, You've got my curiosity aroused. Are you in data processing too? I don't even know what you mean by a VPN connection? Also, the idea of a couch and a mouse that is not connected to the computer? That sounds so neat. That sounds great. There really is such a thing? And the keyboard does not need to be connected to the computer? What kind of a setup is it? It sounds too good to be true. Tearose, Earthmother, Thanks for your kind wishes.

Well, folks. Here I go! I feel like I'm heading into the unknown. I've applied for SSDI (Social Security Disability) and for a disability retirement from my place of employment. (I happened to have worked at the Social Security Headquarters as a computer programmer before I left my job.) The upshot is, they (SSA) have refused to give me disability retirement. I appealed this once. Also, I've been refused SSDI. I've appealed this twice. So, here goes! I figure it's Social Security that expects me to work, so they, of all people, should help me (in whatever way they can) to stay employed with them. I spoke to my personnel person about my situation. I will try to go back 3 days/week, 8 hours/day. That's what I left. I really do NOT think I can sustain the job. The personnel lady then suggested "work at home by exception". I may be able to work at home, but I know for a fact they would have to give me a different job since the job I had would not allow me access to the data from at home. Anyway, I don't know when I start yet. Boy, is my former boss going to be surprised to hear from me again after about 11 months. (That's when I left.) He's probably figuring ,"When can we get this lady out of our hair?" What choices do I have? Either they believe I can't sustain a job (they don't believe me now), or they're going to have to see for themselves. I must say, my life is certainly interesting. Nothing "normal" about it. Anyway, here goes! I certainly will NEVER forget all the wonderful people and support I've gotten from this board. I'll probably still be checking in on this forum, but knowing me, I won't have much energy left once I start working. You're all great and you're always going to be on my thoughts. Hang in there.

Hilfgirl33, I also have a strange reaction to sugar, though I haven't tested positive to diabetes (yet). Whenever I ingest a simple sugar (including the kind in Gatorade) , I'll get hungrier sooner. I absolutely must ingest a protein with a simple sugar, or I'll get hungry too soon. Is that weird, or is there a logical explanation? If you don't know, maybe I'll post this question on it's own and see what everyone else thinks.

Here are my thoughts. You must stop defining yourself by "the ability to hold a job". You are a worthwhile human being whether you hold a job or not. Some people can work, and some people can't. That does not make you less of a person. I do not know your particular family situation so I cannot give suggestions to you personally, of course, but I always try to focus on the positive, not the negative. It's hard to believe, sometimes, but even though your body may not work perfectly, there are some positives in you life. Identify them. And, by all means, accept the reality that you've tried to work and you cannot. I would have no guilt about applying for disability. It's a necessity. If you cannot support yourself, where would the money come from? Just some of my thoughts. I wish you the best in whatever lies ahead for you.

Jackie, I'm a Christian and I can say for sure that I would have lost my mind a long time ago if it weren't for Him and His strength and His message. Take care and welcome, Nancy