futurehope

Congratulations! I did not know what "fully favorable" meant when I got my letter and I had to call my lawyer. I was so convinced I'd never get SSDI, that I had to keep asking over and over, "You mean I got it?" "I'm getting paid?" Yep, you got it. And you should also be getting a nice BIG check that covers since 2002 (or whenever they told you.). Word of caution. It is tempting to go and spend the money, but you have to pay taxes on it (at least I did). So keep some around. I think it depends what tax bracket you're in, but I know we have to pay taxes on my SSDI. Great news!

Just to add my two cents worth. I was having tooth pain once, and I went to the dentist. In the course of talking with him, I mentioned that I had recently moved. His eyes lit up and then he said that it is possible that the stress of the move had me clenching my teeth more (wihtout being aware of it) and that could be causing my pain. He told me to wait a few days and see. He was right. The pain dissipated and I think it was from the stress. Obviously, I've had other problems in which a specific tooth had been identified, and in those situations I needed a root canal.

I am baffled by the endodontist that saw abnormal results across the board and sent you on your way. I assume it's because he couldn't nail down one tooth to work on? What if you have an infection in your jaw bone from an abcessed tooth? Did the xrays show any weird shadows? Obviously, something is very wrong. I suppose the endo does not want you to pay for a root canal only to find out that the problem is still there. It is quite expensive. Don't give up. BTW. I just love seeing your posts and your name OCsunshine. I live in Maryland and it brings a smile to my face to think of OC every time I read your name.

Lois, I'm with you. I know you'll come through this with flying colors. I was diagnosed with thyroid cancer when I was 20 years old. I am 54 years old now. I, too, was told back then that I would never be cured, that it could come back at any time, so I know what it is like to have that hanging over my head. It had come back once. But, you adjust. After a while, you just move on and live the best way you can. And know that together with your family and people on this board, we are there for you when you need it. Hugs your way

I'm prone to get phlebitis when I'm inactive. That means that after a bout of the flu, or a long airplane ride, I've had inflamed veins. Sometimes I do nothing. Sometimes I put on my 30 Hg pressure hose and one time I took aspirin for two weeks (which upset my stomach). As a matter of fact, I have a vein now that probably should be surgically removed (because of the constant problems), but I'm not in good enough health to have the surgery performed.

Jenniferinohio, I had the exact same thing happen to me when I was wearing my POLARTEC watch. I was doing my usual walk around the mall, glanced down and saw a REALLY high heartbeat, twice, and thought, "oh no, I'm going to keel over or something." Two seconds later it was gone. I decided that wearing the watch and looking at it every few minutes was making me excessively nervous (because of that incident) and I haven't worn it since. I do not want to stop exercizing because a watch is freaking me out. To answer your question, I have no idea what caused it to show an excessively high heartrate, but I suspect that my heart had done one of its "skips" (I don't know the technical term for them). In a way, I'm glad to hear I'm not the only one this has happened to.

Great thread. Dawn, thanks for starting it. One of the worst problems for me, besides being too debilitated to take care of myself for days on end, is the loneliness - not being able to socialize, other than by phone or internet. And, since I cannot sit or stand for any length of time without some kind of symptoms, (not the least of which is chronic exhaustion), how do people make themselves meals? Or does anyone use meals-on-wheels or something like that?

Menopause triggered the onset of a much more debilitating condition. (I may have had a mild dysautonomia before that but was fully functional.) I was 51 when I was diagnosed and am 54 now. I see a slow deterioration since menopause and no improvement. Who are these doctors that say that this improves with age? Or better yet, improves with time?! They haven't spoken to me.

Folks, I googled Mayo Clinic Dr. Philip Low and got the following: http://www.mayoclinic.org/news2003-rst/1954.html It appears to be discussing pyridostigmine(?) aka Mestinon. Other stuff listed from the google search also mentions pyridostigmine. We've all heard about that. Maybe ChadK is talking about something else?

Yes, I know Dr. Khurana. He's my doctor. You can email me if you have any questions.

rqt9191 I can't tolerate yogurt either, not even the soy kind. There's something about the bacteria or whatever. It gives me a stomach pain. I can count on it. If the food is supposed to be "good" for you, I can't eat eat. Figures?! Dancinglight Where did you get your information about the milk sensitivity not showing up in a milk allergy test? Just wondering. My entire life my stomach has been "sore" and I've had IBS forever and I do NOT test positive (in the blood) to milk protein. BUT, I noticed that the intestinal problems and soreness are much improved after I've cut out milk. I've asked my allergy doctor about my negative blood test reaction, and he didn't say anything?!

I was diagnosed at 51 years of age, am now 54, and I plan on living the usual life-span of most members of my family (God willing). I think it is futile to concern oneself with statistics anyway. Each one of us is unique and no one can predict with any certainty the lifespan of anyone.

May God bless the rescue and recovery efforts and may your friend's relatives be found safe and sound.

God bless you and your husband and may He give you the strength you need in your time of trial.

Lavanity, Hi, I've been flying for many years - mainly before POTS but some after the diagnosis. I think that you could have been experiencing the mild "vertigo" attack that I get when the plane is climbing out and/or changing altitude rather quickly or using the artificial cabin pressure when at higher altitudes. I get a 1 second vertigo attack depending on what the airplane is doing at the time. I do not have a sense of passing out, but if it were the first time I've ever flown, and I hadn't ever felt that before, I might think I was going to black out. I'm so used to this, that I don't think about it. It happened pre and post-POTS. Also, my take on the "I can't keep my eyes open". I've seen this affect on my entire family, including the healthy ones, on some flights. I really believe that the airflow in the cabin sometimes contains less oxygen because of all the people in the plane and the recirculating air (or whatever, I don't know), and you cannot stay awake under those circumstances. I've seen this happen mainly on the ground. You could also experience this MORE because of the POTS and the fact that your brain probably has slightly less oxygenation anyway. It's like altitude sickness to the max. And I've seen "normal" people fall asleep from what I call the "lack of oxygen" in the cabin. It usually adjusts itself once you're in the air. Then again, if you do sleep, the flight passes more quickly.

Sunfish, I just wanted to let you know that I saw Dr. K yesterday, and in addition to the hydrocortisone (which the endocrinologist recommended), Dr. K suggested that 500 - 1000 CC's of IV fluid admininstered AFTER the surgery would go a long way in my recovery. I have let my surgeon know of both of these suggestions.

Sunfish, FYI, my surgery for tomorrow has been postponed. But what I wanted you to know is that I did speak with Dr. S when the surgery was still set for tomorrow, and he said he would recommend to my surgeon that I be given hydorcortisone during and after the surgery to "prevent a crash" (even though I have not been taking the stuff on a regular basis due to reflux issues). So, that's Dr. Shomali's take on the situation.

Dr. Khurana wanted me to start on a small dose (in liquid form), which I did. I got such an unbearable headache that I couldn't wait for it to wear off and I never tried it again.

Melissa, I'm back. I was told by Dr. Shomali that since I did react below normal under the ITT test, that in all likelihood, I would react poorly to such things as "illness/ surgery", etc. I told him that I usually feel "wiped out" for longer than normal after, say, the flu, and he said "yeah, you might need additional Hydrocortisone after a stressor." Anyhow, I'm supposed to undergo elective surgery this Friday for a REALLY ugly vein in my right leg (to remove it) at Union Mem and I'm so scared of my reaction to the entire process, that I've called my surgeon and Dr. K and Dr. S (all at the same hospital) and said, "Please feel free to consult each other if you should have any questions in regards to my health."

Kimberley, I'm like you. I push myself every day. I consider it a blessing when I manage to "get through" everyday normal activities that able-bodied people do not even think about. I've learned to appreciate all the help the Lord gives me through everything I do. I am not one to roll over and give up, so I suffer a lot. I've also learned to not complain as much as I used to before I had a diagnosis since it does not help me feel better and nobody understands what I'm saying anyway. What does it mean to "feel sick" anyway, and who can do anything about it? You know what I mean?

I'm in the category of "lurker". I check in here once in a while to see if anything's new. For me, I realized that thinking, talking and writing about something that is a part of my everyday life, well....... it wasn't serving any purpose anymore. When I was first diagnosed, it definitely helped me feel better to talk to others in my condition. But, after a while, once I came to terms with "this" and realized there were others in the same boat, I don't feel the need to keep thinking and talking about it. That is not to say I won't be here ever again. I'm just trying to focus elsewhere as much as possible. I totally understand why others may use this forum more frequently and I'm not judging - just giving my thoughts.

Hi, my cosyntropin stim came out all right. It shows that your adrenals respond to the pituitary hormone which normally stimulates them. I also had a more sensitive test called the Insulin Tolerance Test which is not usually given to adults, much less to people who have a normal cosyntropin stim test. I responded but in a less than ideal way to this stimulation test. The only reason I was given this is that the endocrinologist is VERY interested in POTS and was willing to investigate me further for causes. He tried to treat me with additional adrenal hormone, but I could not tolerate the heartburn it caused. He has had success in other POTS patients with additional adrenal hormone - very little amounts such as 20 mg in the AM and 5 mg more at 1 PM which simulates how the body produces the hormone cortisol.

I'm 53 years old and I really went downhill after menopause 3 years ago. I believe I had a milder case (undiagnosed) for years, so mild in fact, that my life was relatively normal, then wham! menopause. But I have to say that in reality I have NO idea why I got worse 3 years ago.

Radha, I was unable to take hydrocortisone as it caused serious heartburn. But I have again been told how patients have been helped. The doctor had started me on 15 mg in the AM and 5 mg at 1 PM for a total of 20 mg/day supplementation. It could be lower though because he suggested I try lower because of the heartburn. Even at a lower dose, the medication is definitely no good for me.

I noticed you were asking if I'm here. Do you have a question? Do you need to contact me regarding a doctor?