futurehope

Oh, Nicole, bless your heart for trying. Please don't give up. You overdid it. You'll learn when enough is enough. You can do it. Please don't give in to this. Just pace yourself. I found when I need to "walk" because of a show or exhibition or something, I use (or rent) a motorized scooter. Or, your boyfriend can have a "regular" wheelchair handy. That's the only way I could do it.

Dayna, What a lovely website. How nice of you to share. Thank you. I may use it. Have you posted there yet?

Linda, It could very well be that your premature birth predisposed you to health issues. It's difficult to prove. I think my health issues could be related to the fact that they performed a "fluoroscope" (consists of x-rays) of my mother all over her body when she was three months pregnant with me. Back in 1951 they didn't know better. I wound up with cancer of the thyroid at the age of 20 (probably was predisposed my entire life), and ANS irregularities my entire life. My POTS diagnosis was at 51 years old. Again, it's difficult to prove, but that's my theory.

I hope you make it to the doctor's tomorrow. Are you aware that a UTI can make you nauseated? You need to be treated. I wish you the best. Are you so sure it's anxiety? Had you only gotten sick on the way to the doctor's or are you usually sick? Sorry, if I missed your other posts.

If it were me, I would wait to get the TTT with one who knows because the doctor who understands POTS will know what OTHER symptoms to look for besides increased heartrate on the TTT. My neurologist wrote down the other stuff as well such as bluish color to legs and hands, feeling fo heaviness in legs, headache, etc. He knew what to ask me during the TTT.

Thedizzies, No, I do not necessarily have a high heartrate while I'm having other symptoms. It isn't necessarily the high heartrate that causes symptoms; it's dysregulation of the autonomic nervous system. In my case, I feel like it's "lack of bloodflow" to the brain, or blood pooling in the lower extremities that causes symptoms at times. Also, my blood pressure goes up on the TTT, not down like some people here.

Jen, I'm so sorry you are having problems getting this doc to hear you or help you. FYI I am diagnosed with POTS (via a tilt table test). I did not faint during the test. I feel bad sitting as well as standing. I can be very out-of-it and fatigued when lying down as well. I have chronic GI symptoms which wax and wain along with a host of other symptoms listed on this website. You're best bet is to locate a physician who is familiar with autonomic nervous system dysfunction. Others on this forum have asked where you live to try and help you. If and when you do locate a physician, you should ask the receptionist ahead of the visit if the doctor has heard of neurally mediated hypotension or postural orthostatic tachycardia? That way, you won't waste your time at the wrong doctor's office. I forgot if you said this doctor will give you a TTT or not? You do NOT have to faint to fail this test. If you have any of the POTS symptoms while standing, in addition to the increase in heartrate, that would be an abnormal response. During the TTT, my hands and legs turned bluish. I felt headachy and bad and very uncomfortable. That is not a normal response to being upright. I hope you get answers soon.

I don't even know if this is a relevent comment, but, here goes: I was on Remeron. It's an antidepressant, but I don't know if it's an SSRI. I took it to help me sleep. I was on it for only 5 months and discontinued it because of weight gain. It's pretty suspicious to me that my POTS became full-blown AFTER I had been on the Remeron. Before that, if I had POTS, it did not impact me nearly as much. I really wonder about some of these meds. But there's no way to prove what I think. It just seems odd to me that I got so much worse after being on the Remeron.

Carmella, What was your name before? I can't find you. Also, is there a reason you haven't posted until now? Have you written letters to the autonomic clinics at Mayo, Vanderbilt, Cleveland Clinic telling them of your findings? It would be worthwhile to let them know. Then they could disseminate the info or better yet, do studies. Have you told your prior doctors? Also, there are different reasons for us to have our dysfunction, for example, autoimmune processes, Ehlers-Danlos, porphoria, etc. If your method works, it is because the ONLY thing that needs correcting is the first vertebra. We may all have different reasons for our problems so one size cannot work for all. I am very happy for your positive outcome and I don't mean to minimize that. I've already spent much time and money and am very careful where I put my resources, so you'll have to pardon my skepticism.

I would want people to know that even though I look good on the outside, life is a struggle. Activities, trips, events, visiting others or having them visit me, shopping, eating out, going to church (activites that able-bodied people take for granted) all create stress which makes me feel even worse. So, I'm in the uneviable position of trying to live my life (not be a hermit) even though doing so makes me feel bad. To sum it up. Looks are deceiving. The real heros are the people who do everyday activities and give to others with a smile on their face even though they are hurting inside.

Well, we're not really supposed to diagnose anyone on this forum, but it sounds like it could be POTS. You can be diagnosed by having the doctor do a tilt table test. Do you know if the doctor you are seeing is familiar with POTS or at least NCS (neurocardiogenic syncope)? You might want to ask his secretary. Anyway, I'm sorry you're having problems and I hope this website and forum can be of help. Welcome!

When I was pregnant, I pretty much did a lot of sleeping. You're working, right? You may have to cut back on your hours.

Great going! On a typical day for me, I usually can manage 1/2 a day. It's the second half when I become really tired and lose my energy all together. But that doesn't stop me from enjoying the first half day. Way to go! Take anything you can get.

All I can say is that if I had started out on 30 mg, I would not be feeling very well either. I am starting using the liquid form which has allowed me to take 1 milliliter, which is the equivalent of 12 mg. And I am noticing side effects from that. I have increased heartburn, some stomach cramping ( though not so bad today. Today is the fifth day at this dose.) But the good news is, while the med is in me, I have more energy and less potsy symptoms. I still don't know if I'll be able to keep taking this, though. I will be talking to my neuro this Thursday. Did you have to start at 30 mg? We're all so sensitive to meds.

Yes. I just started with a mini dose this past Thursday. I've noticed: slight headache increased gut dysmotility including diarrhea sometimes increased heartburn seem to have a good energy level when it's in my system don't seem to notice my "potsy" feeling as often while it's in me I'm not sure I'll be sticking with this even though I want/need Mestinon to work. I'll probably stick with it about 2 weeks unless the heartburn finally gets to me.

I'm not sure I have exactly what you are describing. I have days, sometimes many of them, where I feel like I'm not "lucid". That's the only word I can use to describe it. To me lucid means, "clear". I'm there. I'm walking, talking, doing things but I'm not "lucid", like in a fog maybe but there. The only way I can tell I'm not lucid is that I remember what it was like to feel like everything was "clear" and "there" and more "real". Difficult to describe, really, but I notice a "with-it", "clearness" on the one hand, or a kind of "dullness" "out-of-it" on the other. Is that what you mean?

I'm glad that tomorrow you'll be talking to your regular docs. I understand that this stuff *****. Let us know how things go.

Linda, That sounds like a horrible experience! Did the oncall PCP let the doctors in the ER know that you were coming? Did he leave orders with them to hydrate you? I'm just hoping that if you need to go to an ER or to be admitted in the future, there will be a doctor who is your advocate letting them know ahead of time. Also, maybe your PCP can write a standing "script" for the ER for IV fluids so they can see what you need and take care of you. If indeed your doctor has concerns about your new symptoms, why hasn't HE admitted you and run tests? I certainly hope you are treated better if you ever need to go to the hospital again. I was trying to give you some suggestions for the future.

Lauren, I'm not in your age bracket, but I can totally relate. I, too, after about 4 years, am trying to come to grips with the fact that I am not getting any better. As a matter of fact, I think, over time, I'm slightly worse. I usually cope rather well by using the "one day at a time" technique. But recently, with my daughter pregnant with my first grandchild, and she living across the country from me, I'm realizing what obstacles my poor health is putting in my life. The trip almost seems out of the question. I'd love to be in the birthing room with her (if she wants), but that is out of the question. I'd love to help her, but that is out of the question, etc, etc. This is all very hard to adjust to. My symptoms are totally unpredictable. It's really stressful with no one else realizing just how difficult my everyday life is. I'll probably need to start seeing a counselor to help me cope with "my new life". The only thing that has kept me from seeing a couselor up until now is that I did not want it on my medical file so that any doctor could then blame my symptoms on "mental problems". I feel for you and I understand what you are going through. I feel like my life is a "bunch of lemons" and I'm desperately trying to make lemonade. Trouble is, I have no energy to make it!

Hayley, I certainly hope this isn't really a "goodbye". I want to hear from you again. Please check back with us when you are up to it.

Just started it for the second time yesterday. I have the liquid form of the name brand Mestinon. I'm going to be taking 1 ml for a week, 2 ml the second week and 3 ml the third week which will wind up being 15 mg of Mestinon. I'm taking it in the AM with food. So far, the only thing I notice is a slight sensitivity when touching my temples like they are a bit sore. This is an unusual reaction, but I'm determined to keep going with this trial as I need to find something that helps. Are you going to try this med? Let me know how it goes with you.

I do not think you are making this all up. How could you fake passing out at unusual moments? I hope eventually you receive respectful care from a doctor familiar with POTS or NCS. You will probably eventually need to have a tilt table test done by a neurologist or cardiologist. I think those are the two specialists who do this test. If I were you, when looking into finding a doctor, first, look at this website to see if there are any familiar with this ailment near you. Hopefully, you can find a good doctor. If not, I would mention to the doctors secretary that you think you may have Postural orthostatic tachycardia or neurocardiogenic syncope and ask if the doctor would be able to help you? Welcome to this forum. Check all the info you can find on this forum and ask away!

Boy am I frustrated. I've had a diagnosis of POTS for over 3 years. My daughter and son-in-law live in Washingtom state. She's due to have my first grandchild at the end of June. And they both may be going to Germany afterwards. He's in the army. I'm already freaking out. Sitting or standing make me sick. I do not like riding in ANY vehicle of transportation, much less a long plane ride especially for long periods of time. I'm frustrated because I'm freaking out about the upcoming trips and my husband says to me: "Why Aunt so and so has cancer and Uncle so and so has heart disease and THEY went to Germany to visit their son." Yeah, great. I'm happy for them. And I answer, "How would you like to travel with feeling like you're going into shock and feeling like there is not enough oxygen going to your brain?" Not to mention all the other symptoms I get of which there are many. I'm trying to get myself in better condition for this trip. I've just been to Johns Hopkins, and have had many autoimmune tests done. I also have a diagnosis of MG but with no symptoms. SO I'm trying Mestinon again. I just wanted some understanding from my husband about the stress all this is causing me, AND HE STILL DOESN'T GET IT. Why do I keep hoping he does finally get it? I feel like I'm hoping for something impossible. Forget that he'll ever understand the stress I go through thinking about these travel plans. I just had to vent. Thanks. I don't expect him to change, so I better change or I'll start feeling like I'm banging my head against a wall. And that's non-productive

I don't know if it's a POTS thing or not, though I suspect that any disease process that affects the autonomic nervous system can cause problems. I have insomnia. I've had if for years probably one of my first noticeable symptoms. I've consulted a sleep specialist about it and had a sleep study done. I'm not currently on meds, though at my next visit I might need to to be prescribed them. In the past, I've tried Ambien (quit working after a month) and two different benzodiazepines (tranquilizers) Klonopin .5 mg and Restoril 15Mg then 30 MG. They quit working after awhile. I've also been on Remeron (an antidepressant) that I think brought on my POTS and also made me fatter. So, I'm on nothing right now, but I probably still need something. I hope you find the right thing to do soon. I know it can be miseracble when you can't sleep and it defnintely can make symptoms worse.

I don't want to sound dismissive of your feelings, but is it possible he really DID want to know why you were there - without being hurtful? Were you at a regularly scheduled follow-up or did you just "have to" pop in? He might have really wanted to know what you were doing there.