mkoven

It does get better or it can get better. Of course, we are all different, with different causes for our symptoms, so different treatments, and different prognoses. In my case, I've had pretty consistent improvement since last summer, with better diagnostic testing, better meds, and a better understanding of the problem. That doesn't mean I'm "normal," but there are days when I'm much more bothered by other things--either health or non-health. The huge thing for me was finding knowledgeable, responsive doctors (both are important!). Before that, I was a wreck. It's unfortunate that so few docs know about dysautonomia or how to treat it. I have done better with a combo of compression, cardiac rehab, florinef, and midodrine. Till I got to see good docs, no one wanted to put me on meds, because they didn't have experience with midodrine and florinef, and it sounded so bizarre to them to deliberately raise someone's bp--esp. since I'm "middle aged " (42) and overweight (on the chubby side). I was also scared. But once I saw docs with tons of experience prescribing these, I could be reassured. I started with teeny doses. For me, florinef really made a huge difference. But if you don't already have a knowledgeable doctor that you can work with, I would say that's the first order of business, even if you have to travel.

No weight gain for me. I did have more side effects with the generic--jitteriness. I don't have this with the name brand, proamatine.

I'd love to be able to fly transatlantic. I used to do it regularly before I got sick with no problems. But I'm afraid of feeling really bad and being "stuck" for the remainder of the flight. But I really don't know how I'd react. I did however research boats--they take a VERY long time, are pricey, and only leave/arrive from/in one or two ports.

I don't technically have asthma, but am allergic to everything--who knows, maybe some mast cell. My doc wanted me to try a tiny dose of propranolol and I couldn't inhale well on it. So I probably have some latent asthma. I'm on florinef and midodrine. I do take a tiny dose of a calcium channel blocker, but not for tachy-- for vasospasm. It's norvasc. But it's one that doesn't affect rate, so doubt it would help you.

I'll admit I haven't flown in forever, in part because of the type of reaction Tearose described. Once it settled down, did you feel "normal" again?

I tried it when I first had symptoms several eyara ago, and found it somewhat helpful, if I inceased with TINY increments and did not push till I felt really bad. I had to stop because I sprained my eds hip. I do better now if I just keep moving. It's not only my ans symptoms that are hard if I stand still, but all my joints start to scream. I can walk for up to 45 minutes, but can't stand still without subluxing. So it may be worth a try if you increase no more than a minute at a time and stop before you feel symptomatic.

Some pts can do myofascial release. I think in some states, massage is covered if prescribed by a doc. You can do some work on your own with Clair Davies' trigger point handbook.

As I have eds, I'm very wary of chiropractors. I prefer working with a massage person to release the muscle spasms that keep me out of alignment--much less brutal.

Since many of us have the experience of being on the receiving end of doctoring and are often frustrated, I thought this was interesting. PBS is doing a special on the training and life experiences of seven doctors, from medical school to middle age. http://www.pbs.org/wgbh/nova/doctors/ Seems to be a good documentary on doctors as people.

You will need your doctor to write a letter of medical necessity. I did manage to get it approved with some persistence. I would call Dr. Fouad's office and ask if they can provide this. The tricky thing is that I don't know if there are yet published studies that can be pointed to. For the specifics of how to do cardiac rehab with dysautonomia, you might want to do a search on the forum.

I basically react to all opiates. I now also am allergic to toradol and naproxen, but seem to still tolerate ibuprofen. I feel your itch!

I'm so sorry to hear that Nina. That's really crummy. Are there still pain meds left that you can take in a pinch that you don't react to?

Fortunately, this seems to be one thing that's okay. My total is 140, LDL 79, HDL 44, TGL 76. My LDL dropped a lot. the only real difference is consistent exercise. (It'd been between 97-111 before).My hdl has always been on the low side.

I have heard, however, that one can absorb magnesium from epsom salts.

In my case, I think it works best with midodrine--neither one alone would do the trick. I still get lightheaded if I'm late with midodrine. It does really make it that I can hold on to salt/fluids. Now when I feel bad, if I drink a lo,t it is much more effective. Before, I would just pee it out.

My symptoms vary as top whether it's more hypotension or tachycardia-- florinef helps both. I don't know how long I'll be on it. But the difference in my functioning is dramatic and I'm not willing to go back. I was on midodrine alone for six months. it helped, but I was till on a roller coaster. Florinef evened me out. I do worry some about long term effects, but without it I could barely sit up. if my bp started creeping up consistently, I would talk to my doc about lowering the dose. I also take mododrine and wear compression.

I was reluctant initially, but it's been a lifesaver for me. I'm on a small dose and it complements the midodrine. But my bp and symptoms have been MUCH more stable. Some recommend starting at a quarter pill and increasing every 1-2 wks until you feel better. I took my bp a lot in the beginning with it, but not so much anymore. Initially I had bloodwork to check potassium, as florinef can deplete it, but no problem for me. I felt a little jittery at first, but no more. I take 3/4 of a pill in the morning. It helps he hold on to salt and fluids, whereas before I would pee it all out. So I really don't have any negatives from it, and I'm VERY sensitive to meds. Just to give you a sense, before florinef, my bp would go from 70/30 to 160/100 within fifteen minutes. Now it's almost always 100-120/60-80. The only other major change since adding f has been cardiac rehab and a lot of lower body strengthening. the two helped together, as without florinef I felt too lousy to exercise. but i believe the exercise has then helped too.

There are lots of meds you can take if your bp is low--e.g. midodrine, florinef as just two possibilities. You indeed should find a doctor with more experience treating pots.

I've caught some stomach thing with nausea and diarrhea and fever. I feel pretty lousy and am having a really hard time drinking without triggering nausea and diarrhea. I know dehydration is to be avoided. I've tried just sipping a beverage with electrolytes. but even that is a challenge. Any ideas? I don't think it's too bad yet, but only if this clears soon. (Sorry if tmi, but my urine is pretty dark now.)

I'm short and stout, but a good 90 pounds below the alleged weight limit. But yes, bringing my own seat along makes many things possible. I can barely stand waiting for the light to change at an intersection, let alone in any kind of line, no matter how short. the only downside is I find it hard on my neck to talk to standing people while seated. I appear to have some laxity at the cranial-cervical junction, so it's not great to have to look up all the time to talk to people. I guess I should get in the habit of asking people to sit if we are talking for more than a couple minutes.

I've never had a problem with security. Usually I just get comments from people about how they'd like one! I had one like the one shown in your picture, but it eventually collapsed on me at a very inopportune moment. I'm significantly under the weight limit, so it shouldn't have. I've since gotten a four-legged one. It's a little heavier, but sturdier. I highly recommend them! I often use my walker with a seat instead, though, because it has a basket, and my joints don't like it if I carry much of anything. but if you don't carry a purse, or that doesn't bother you, the seat cane will do the job. I'm a big fan of b.y.o.s. (bring your own seat).

I read some of Sarno's stuff several years ago. I'm all for mind-body integration, but I think he swings too far-- that mind controls body. If only it were so simple! I frankly am not a fan. That is not to say that one's state of mind can't play a role in making things feel or even be better or worse, but I don't buy the psychological causation. I get just as irritated with people who claim that sick people (anyone from us to cancer) should get better through psychological healing. Here's something interesting on a related note. I tried biofeedback for migraines, but the doc thought it might help my ans stuff as well. But, because my ans is so messed up, it made things worse! I have such a vagal response to slow deep breathing, that I end up wanting to faint! Followed by an adrenaline surge. So I'd be going along, slowing my breathing, slowing my heart rate, and then it would drop too much, and I'd feel awful. He "accused" me of having an anxiety attack, and my response was, "I'm not anxious, I just am fighting fainting!"

My one comment about the ttt is that it isn't a standardized protocol. If you have any control, and esp if you have to pay yuorself, have it done at a place with experience treating ans disorders. I had it done at cleveland Clinic and it was a tolerable experience. If I'd had it done in champaign, I'm not sure... there they really only look for loss of consciousness and I've heard it's miserable. I know one woman who did it there and said that it was torture. Also, measuring blood flow to the brain is not something that is systematically done. Cleveland is one of the top places and they did not do this.

Point well taken, Melissa. I've spent far too many hours in the ER or hospital being worked up for chest pain. And the frustrating thing is being worked up for it by doctors who aren't familiar with ans symptoms. At this point, I seem to get two types of chest pain. One is definitely ans-related, and has improved with ans meds and treatments. But the other seems to be coronary vasospasm or prinzmetal angina. This is quite serious and the treatments/dangers quite different. It feels quite different from my ans chest pain. and I know that if I get a bout of it, and I can't reach my cardiologist, I have to go to the ER, because it can cause damage to the heart. I'm not saying that is a likely scenario for most people here, though I think there are a couple others here with both conditions. And now that I know my different types of chest pain, I mostly know what to do. And many of us know the frustration of the ER--they are there to keep people from losing life and limb, not a place that is able to diagnose or manage complex syndromes. But I do think any NEW chest pain should be discussed with a doctor. Ideally, we would all have quick access by phone to a doctor who knows us, knows ans issues and how to distinguish them from other causes of chest pain. I'm very lucky this year as I'm on sabbatical in a place with a great cardiologist whom I can page if I'm having a bout and not sure what to do. She has returned my calls promptly and we have discussed whether I need to be seen. And she has kept me out of the ER by properly recognizing and treating the two different issues I have going on. (I take a calcium-channel blocker now to prevent arterial spasm, in addition to florinef and midodrine. it's an odd combo, but seems to work for me, for now). But she also is ready to tell me when I need to go in. I'm happy because I can't tell you how many er trips I had until I started working with her, and now I haven't been since October. My rule of thumb, for MYSELF, is that if my chest pain improves by lying down, fluids/salt, compression, etc., and it feels like it did in the past, I stay home. I know I''m not saying anything particularly new, but there are lots of causes of chest pain--some pretty benign and some pretty serious.

Any new chest pain should be checked out urgently. If it goes away when you lie down, that tells you it's probably ans-related. But if it's new, get it looked at. We get so many symptoms that sound like something life-threatening, and typically aren't. But we shouldn't assume everything is ans. If you have a good ans doc, I'd put in a call/page. If you can't get through, to be safe, go to the ER--even if it ends up being nothing dangerous, better safe...