dsdmom

I LOVE Zofran! (except for its constipating properties...). I was prescribed Zofran during my pregnancy and it was very difficult to get my insurance to pay for it. At the time it was not offered in generic, but I believe the generic is still pretty pricey, just not as pricey. Hopefully your insurance will cover that.

I'm with Sara on this one...please be careful. I used to take Cipro for UTIs and didn't have any issues but then I was prescribed Levaquin (same family) and there is a possibility that it caused my dysautonomia symptoms. I will never let someone prescribe that for me again...everyone is different, but just be careful.

I donn't think you listed Mestinon - I have recently started that one. I don't do well w/ drugs in general (very sensitive) and could not handle Florinef either. Haven't tried Midodrine yet and my doc wanted me to try mestinon first b/c it has less potential for side effects. (I still get some but they aren't terrible). anyway, it's worth looking into.

Deb, Check your private messages - I sent one.

Here's some info I found - CPAP, continuous positive airway pressure, delivers a single continuous level of pressure. CPAP is usually effective in treating obstructive sleep apnea. BiPAP delivers a higher pressure while breathing in, and a lower pressure while breathing out. BiPAP can be used to treat obstructive sleep apnea and is sometimes effective in treating central sleep apnea. I t can also be used to assist ventilation in various pulmonary and neurological disorders. When it comes to CPAP versus BIPAP machines, CPAP machines are usually less expensive, but BIPAP machines can help prevent the chest spasms and feelings of claustrophobia that can occur while wearing CPAP masks. It is difficult to exhale when pressurized air is being blown straight at you, meaning that many people can better tolerate BIPAP machines. Although some insurance companies won?t pay for BIPAP right away, they will often approve them for apnea sufferers who have difficulty with a regular CPAP machine. Also, I am still getting used to mine...I'm up to about 7 hours, but at first I could only wear it for an hour or 2. It'll just take time. Ernie, did you have to try several full face masks before you settled on that one?

Deb, Thanks for sharing - that is wonderful news! I'm curious - were you ever tested for/did you have any autonomic neuropathy?

I use something that looks like this: http://www.fphcare.com/osa/FlexiFit405.asp. I was using a cpap at a pressure of 7 w/ a flex of 3 but my dr just switched me to a bipap (5-7) and I love it! My breathing feels much more natural. I couldn't use the nasal pillows because everytime I turned over (and I'm a busy sleeper) they would shift out of my nose and I would have to fix them.

I couldn't tolerate Florinef at all - I felt very weird. Like I wasn't in my body. Again, a side effect not listed, but as soon as I stopped, that feeling went away. I also just felt crappy in general - can't really describe it.

Hi, Your symptoms sure sound like they could be from dysautonomia. Does your heart race or is it just hard to stand? I ask because my heart doesn't race (it used to) but I dread all the same things you do - especially church. Standing AND singing? Too tough for me! Anyway, I have dysautonomia, but not POTS. For my TTT they only kept me up 10 minutes. They got a lot of info from other tests too...valsalvar, QSART, doppler...so make sure you ask for autonomic testing - not just a TTT. You shound't suffer when there are things you could try!

I wonder if you could also be feeling ill because of the test itself - did you have to drink/eat anything that had a ton of sugar in it? Just thinking about the one time I had this test done and I felt terrible afterwards - and I didn't have dysautonomia then. I feel like if I had it done now I would react even worse. Just a thought...

I just had this happen to me today. I went shopping for a wedding gift and was there maybe 30-45 minutes when I started feeling shaky, weak, etc...like I should have been really hungry. But I had just eaten not long before I left for the store. Another time this happened I was also shopping - I wonder if it has to do with me being on my feet for an extended period. And the feeling comes on FAST. I don't understand it.

What does it feel like? Do you have it all the time? Just sometimes? Where? I've been getting these shocking tingles in my toes and lower legs - they aren't just tingly - they hurt. Not all the time...just wondering if that is what it is. Is this from neuropathy? Does its appearance mean neuropathy is getting worse? I just found out I have autonomic neuropathy and until recently only had tingly feelings - no electricity type pain.

Do you know if the lab was equipped to test for Upper Airway Resistance Syndrome (UARS)? It's a type of sleep disorder...there's a lot of controversy over whether this is just a type of apnea or a completely different entity. Regardless, the criteria for this diagnosis would be different than that for apnea. I wish I had my numbers in front of me - I was diagnosed w/ UARS and CPAP is helping. In fact, I don't know what your symptoms are, but there are papers out there written about how people with UARS can feel way more sleepy than someone with apnea. If you want more info, I've got a couple of links you could look at.

My ANA has been tested several times and has always been normal.

So I took only 15mg this morning (actually at noon) and felt ok. But it's 4:30 and I'm starting to feel weird...I'm wondering if it's because I need another dose? How far about do you take your pills? Or what tells you that you need more? Has anybody's breathing ever felt a little strange?

Thanks for the replies. I'm glad this isn't unheard of. I'm feeling better too - I know that the drug is pretty short acting so at least I know I don't have to stick it out that long. I even felt like my breathing was weird. So annoying that I added in 1/4 of a pill and had that reaction! Goldicedance, what sort of reaction did you have when you started? And how did you (and dizzy!) work your dosing? Did you start out low and go up or just start at the regular level? How long do you think it took to get used to it?

For those of you who have tried Mestinon - did you have a hard time getting used to it? I have been going VERY slowly - the first week I have only taken 30mg once a day because I have a tendency to be sensitive to drugs. Today I went up and added in another 15mg. I am now feeling very strange and am a bit frightened. I just feel very out of it - very lethargic but not tired (if that makes any sense). I just feel very heavy. Has anybody else experienced something like this?

Do a search on "licorice" - there are a bunch of posts about this. There are different kinds of root (how they have been processed) and it's important to know which you are getting.

My tachycardia and hypotension is worst in the morning. My doctor isn't sure why this happens but told me to drink 16oz of water as soon as I can. I still find that I don't feel somewhat better until about noon.

Although SSRI's act similarly to each other, you may react differently to each. Each one has it's own set of side effects too, so maybe the doctors suggesting paxil believe that the side effects associated with that drug are the least harmful for you. Really, this can also just be a trial and error period until you find the right one for you. Good luck!

Hi Sara, Just wanted to add that when I saw my ANS doc for the first time (in massachusetts), one of the questions he asked was about my joints and whether I had hypermobility. He checked out some joints and felt my skin and although I do not have those issues, I wanted to pass this along since it seemed to me that he thought there would be a connection! If you feel like heading up to Worcester, MA, the specialist is Peter Novak. He recently joined UMASS from Boston Medical. I've only seen him a couple of times but he seems very knowledgeable. Good luck Feel free to PM if you want any other info on Dr. Novak

Rita, Do you know where we could find copies of Dr. Grubb's articles concerning biofeedback?

Does anybody know if wearing compression hose could be "bad" for us in the sense that our body becomes accustomed to it and therefore does not try to get better? I used to wear 20-30 thigh highs but went up to 30-40 and fell in love. But it's just made me wonder if I am doing myself a disservice in anyway. Anybody have any thoughts on this?

I love my thigh highs! OK, well I don't love them in the summer, but I still wear them. They make an enormous difference in the quality of my days. 30-40 compression.

Thanks all for replying. I suppose I am nervous trying any new drugs these days. Doctorguest, thanks for your input. However, I believe I mispoke. The woman I saw was a well-respected psychiatrist here in Boston that my own psychiatrist sent me to for a consult. My psychiatrist has been prescribing me antidepressants for years with no problems, but since this dysautonomia hit I have been unable to tolerate any SSRIs or SSNRIs. We are using them for depression, anxiety and PTSD. Wellbutrin has been tolerable, but I can't take enough for it to be a therapeutic dose...which leads me to why we sought out more advice. At this point we have to start trying new things but again, that's what makes me nervous - I just don't know how I'm going to react anymore. Thanks again for the input!