futurehope

carlacat, Have you been checked for anemia? I know when I was anemic or when I was suffering blood loss from my periods or from an arterial/venous malformation in my stomach that I did not know about, it made me REALLY dizzy. The really bad kind of dizzy, like woozy. What I'm saying is, I had your symtomology when I suffered blood loss. Also, when I did too much, like push myself to go to work everyday despite my ailment, I suffered very much with the above symptom. I think it's because my body couldn't take working. lol. It certainly felt awful. I remember thinking to myself, "I wonder how long all these other people would last at this job if they felt as bad (and dizzy) as I do on a routine basis?" I also felt like you when I was in Reno, NV and in California in the mountains at a higher elevation (altitude sickness). Talk about dizzy!? Phew, that was a natural high! I really couldn't see straight. I held onto my husband for dear life. Sorry for the rambling. I know how tough it can get when your body reminds you that something is wrong. Make sure you don't have any gas leaks in your house or odors that you might be sensitive to. And check side effects of any medications. I hope you feel better soon.

Thanks everyone. I'm thinking of trying it.

Bless your heart, Ling. I, too, prayed fervently every day and whenever needed to keep my job. I also felt like I was in a ****-hole. The last day on my job, I, too, felt that I was so exhausted that I couldn't talk and that my heart would stop beating. I sonehow made it to the car. I don't know how. We certainly learn the grace of God in situations like this. God bless you! You're my hero for hanging in there. I pray that you have a bright and carefree day. Nancy

How many of you take midodrine? What is your dosing schedule? How long have you been taking it? Is there a "rebound reaction" when it wheres off where you know you need more? Does it help? Are there side effects? What was your original diagnosis of your condition? Thanks.

Purplefocus, In case you ever try to go the disability route, a lawyer told me that it looks better to the Social Security disability people if you show that you've TRIED to maintain a job no matter what. You will have all the documentation you need in your case since you have been trying to work and can't. That's the up-side of what is happening to you. The downside is that you may not have been in the workforce long enough to even consider SSDI. I don't know your circumstances.

Yes, it happens to me and it is something I do not concern myself with. I just chalk it up to the fact that my autonomic nervous system is below average is responding to normal stimuli. Of all my symptoms, this one is low on my list of those that impact my life.

Congratulations, Nina! It must feel wonderful to overcome challenges and to feel you've accomplished something despite the handicap. Just to get through a 5- hour test! To me, that's an accomplishment for anyone.

Nina, I assume you currently are living with someone? Geneva, it was so good to hear from somebody who is/will be on their own for periods of time. It makes me feel that it's doable. I like your suggestion of preparing "what if" scenarios. I might talk to some of my friends, who don't live that far away, in advance and let them know the situation. It's such a blessing to be able to communicate with others in similar circumstances. Nancy

How many of you are coping with your autonomic problems with help from a family member and how many of you are going it alone? I was curious because my husband will be leaving for a 1 week trip this coming April and I'm feeling insecure about being alone. Of course, I do have a telephone, but I do not have anyone I could call in a pinch, except some acquaintances from church, but I would be very hard-pressed to use that avenue unless absolutely necessary. When I'm having dizzines or weakness problems, or any other weird thing happen, or if I have to run errands during a short drive, I tend to feel more secure if I know that my husband is available to call. How do you all do it? Thanks.

Goldicedance, Are you taking the drug Ocretide? How much and how often? I know nothing about it. Is it helping you?

Denabob, I'm so happy for you! What specialty is Dr. Hoeldtke? What test results did you bring with you to show him? How far did you have to travel, and how did you get there? Was this an experimental drug, the Ocreotide? Thanks for the information.

Hi! I hope you feel better soon. I suggest you get your lungs listened to or x-rayed. After a bad case of flu, my husband had this symptom. They thought he had pneumonia, but it turned out that he was having asthmatic bronchitis brought on by the flu. Really, the only way the doctors could tell was by the chest xray. Best of luck.

I'm so glad. You give me hope. Happy holidays!

It's my understanding that it's the same thing and there are several different names for the same thing.

EM, I have a suggestion for you. It's something I do to help in the mornings. If you are able, consider doing some exercises ON THE FLOOR in the morning so that you stimulate whatever it is to get your blood circulating better. I'm not sure if I should relate to you what I do, as I do not know your condition and what you are able to do. I lay a folded blanket on the floor for comfort. Then, I use some very light weights (4 lbs) as part of excercising my biceps, triceps and shoulders. Then there are some leg exercises I do for the adducters, abducters (inner and outer thigh muscles). I then use a tape that helps trim your tummy. Anyway, I'm not telling you all this to brag about what I do. I just wanted to let you know that maybe if you can do some exercises on the floor in the AM, it could help you get going sooner. It does for me.

I've had something similar when my gastrointestinal tract is in an uproar. By that I mean, that either my diaphragm/esophagus are going into spasms (which is more noticeable upon standing or walking), and/or my entire large colon is in spasms. Episodes similar to the above will last about 2 - 3 months until things "simmer down" either because the stressful triggering event has passed or I asked for a tranquilizing medication or I stopped taking a supplement which was no good for me. By episode I mean that the bad sensations would occur at any time upon standing. Are you being seen by a gastroenterologist? They can check that your liver and pancreas are not inflamed. They can check your esophagus. They can do a CAT scan of your abdomen to make sure everything is all right. Are you on any medications or supplements that could be major irritants for the GI tract? Are you on any medications to help with reflux? I'll being seeing my gastro doctor soon because I'm having similar problems. In my case, my heaviness in the chest, or feeling discomfort in the chest upon standing up will eventually diminish. It has in the past. It's seems for me there's a stressful triggering event or a supplement my body reacts poorly to, then my GI tract will become inflamed and go into spasms for a while.

How many of you "feel bad" when either sitting or standing still for long? I'm more interested in the "bad feeling" that is NOT related to pre-syncope or feeling faint or graying out. How does it feel when you "feel bad" and what do you do about it when it happens? How long can you withstand the vertical posture before symptoms occur? Thanks.

I do not consider myself as a fearful person, yet I have now limited my driving to areas close to home (within 5 miles). I sometimes (twice a year) have to go 15 - 20 miles to see my allergist and I just don't think it's safe. I believe that anxiety and rapid heartrate in my case are due to the fact that I'm sitting. Sitting in a vertical position causes my problems (as well as standing still). I do not think you should dismiss what your body tells you. Anxiety can be caused by the body pumping more adrenaline (or epinephrine or catecholamines or whatever it is) to compensate for the "vertical position" of being in the carseat. I think it's easy to mix up the fearfulness with a genuine body response to the stress. Whatever the multiple factors involved, I choose not to go far from home. As a matter of fact, it was VERY difficult for me to stand in the lines I needed to be in to renew my driver's license. Luckily for me, the day I went and the hour I went, the lines were not too long, and I could sit on a bench waiting for my turn (I would respond when my number came up on a screen). Don't know what it will be like 5 years from now though, when I renew my driver's license then. I may not be able to do it then.

I'm losing my motivation in appealing the disability process and I do not want to continue unless I know there is someone out there with hyperadrenergic POTS who has successfully applied for and is receiving Social Security Disability. I do not faint or get low blood pressure that I know of. I just feel sick when standing or sitting still for long, and get extreme fatigue, chest pains, stomach problems and difficulty thinking after awhile while at my former job. Feeling sick because of being in a vertical position does not necessarily mean I cannot sustain employment. So I keep waivering in whether or not to proceed. Please, let me know if you receive disability. Thanks.

EarthMother, I had to give up my career (been working since I was 21, I'm now 52) this past April. I, too, was waiting for my problems to go away. I waited a year and they didn't. I am in the process of applying for Social Security disability. That is a whole different issue which I'm just learning about from reading stuff on these forums (see archives), and joining a Yahoo group called disinissue (disability insurance issues), and emailing people in my area (from the support groups) to find a good lawyer. The first part of the process is you just apply. I'm at the second stage, where I've already been denied. I'm now looking for a neuropsychologist and person to do a functional capacity exam in my area, Baltimore.

Dizziness was my main symptom of POTS when I was at work in front of my computer terminal as a computer programmer. For years, I blamed my dizziness on all sorts of things. But, it's POTS in my case.

FYI I don't totally know everything about my condition as of yet, but I do not think that during the 10 minutes my neurologist had me on the tilt table that I responded with a blood pressure drop (though I do not know what would happen if the test were conducted for a longer period). But, dizziness is and was my constant companion. In my case, I do not think the dizziness is caused by a blood pressure drop. I think it's somehow related to the circulatory system having difficulty keeping the blood flowing to the brain. (That's my guess.) I'm saying that because it feels to me like somebody would feel if they had hypoxia. I had worsening symptoms when I was at higher altitudes. The higher altitutes made me really sick. There's a little less oxygen up there. But that's just a guess. I have yet to have any tests to prove my theory (if, indeed there are such tests).

Ling, I had been working full-time from the age of 21. I'm now 52. At about 50 years of age, my dysautonomia became more pronounced. It became very difficult to go to work. I was exhausted, my head was constantly pounding, and I was very dizzy. I could barely do my assignments at work. I could barely make it to the ladies' room or to lunch. I hung in there for a year past when the symptoms got real bad. One day, I was so thoroughly exhausted that I could barely talk or make it to the car. I actually thought my heart would stop and that breathing took too much energy. I collapsed on the bed when I got home. (Luckily, my husband had been driving me to and from work. I thought it was too dangerous for me to drive the 28 miles.) That's when I made the ultimate life-changing decision. And that was, I was to leave work and not come back. I realized how ridiculous it was to keep pretending that I was all right when I was suffering so much. I also knew I was no good for the company. I've since applied for Social Security disability which has been turned down. I will appeal with a lawyer's help. All I know is, I used every ounce of willpower and strength to stay at my job, and then it was over. I could not go on. I hope your doctor understands. I don't think anyone but the people on this board (or the NDRF forum) really understand how disabling it is to have dysautonomia. The disability people are trying to prove I can work because I'm not in pain. I like to see some of these "doctors" feel like we do for one day and THEN tell us whether we're disabled or not! Good luck to you, Ling.

Geneva, Thanks a lot for the info. I am still unsure whether I am going. The point is, my husband is definitely going and he could go with his brother if I don't go.

Has anybody out there been on a trip overseas with Orthostatic Intolerance? Especially on a VERY long airplane ride, about 12 hours? I cannot sit or stand for long without symptoms and I thought I'd ask if anybody out there has done any traveling and what helps? I have to decide whether I'm going with my husband or not. Thanks in advance