dsdmom

I really need to see an endo but can't get a referral. what I mean is my pcp feels that if I see one it has to be someone who is going to dig deeper than normal and not just look at the 'normal' stuff (because I am far from normal!) but he does not know of one. I've asked around but can't find anybody yet....so I thought I'd throw it out there and see if anybody on here has an endo they like who is familiar w/ dysautonomia in the boston area. Thanks! Or even Worcester, NH, RI...

I read Sarno's stuff too - really wanted it to be true because I figured that meant that I could fix it! Well, it's been 2 years and I've been in intense therapy (was going before I read the Sarno stuff) and unfortunately I'm not all better. I don't buy it for our issues.

I experienced terrible migraines on Effexor but that doesn't mean that you will! I'm sure others will chime in and I think some people have had great luck with Effexor.

I am so sorry that you are dealing with this. Nobody should go through that. With health problems it makes it that much harder. However, I am struck by the fact that your daughter is in the middle of this. You have a choice in this matter - your daughter does not. If for no other reason, get out of this relationship for your daughter's sake. What if he hurt her? I am sorry if I sound harsh but you need to think about her, as tough as things are for you. You deserve better and so does she.

Hi EM, I would love to hear how it goes and what she tells you/gives you. Please pass on as much info as possible! I've got adrenal problems although they aren't 'clear cut' from acth tests, etc. But my doc knows they aren't up to par. Not suprrising after life threatening hemorrhages I guess. Anyway I also just learned yesterday that I have low testosterone - also produced by the adrenals. So I haven't had a chance to talk to my doc about this yet but I guess its just another thing pointing to adrenal problems. Good luck and keep us posted!

This med is currently in trials here (see all links above) and I know one person w/ autonomic dysfunction who is loving it...she was just accepted for the longer trial next - 12 months - and so far is having pretty good results. Hopefully it won't be too long before it gains approval...it's been used in other countries.

Welcome - and sorry you are dealing with all of this. But, yes, your symtpoms do sound autonomic-related. The autonomic nervous system can really do a number on you if it's not working right! I would strongly suggest you see an autonomic specialist - possibly a neurologist. But, not just any neurologist - they really have to specialists in this field. Check out dinet.org for a reference list....

Your daughter truly is special. That was so wonderful (and amazingly mature) of her. I'm glad you had a nice Valentine's day!

have you tried compression hose?

I just wanted to also add - has your daughter check out dynakids.org? If not, it might be good for her to look into.

Good luck!! Keep us posted...

I am so sorry to hear about your daughter. It must be so painful for you to watch as well. My daughter is only 2 and I think about how as much as I hate that this is happening to me, if it were happening to my daughter I wouldn't be able to stand it. The most important step is getting in w/ a doc who understands and is going to spend time with you. Because unfortunately most of the treatment is trial & error. The drugs your daughter tried didn't work - but there are others to try. I also have been diagnosed w/ CFS/FM. Just recently, actually. It makes so much sense to me b/c the fatigue is debilitating, as you say. It sounds like your doc is on the right track as far as getting her somewhere for an extended stay - it's going to take a lot of time and patience. I'm sorry I don't have any answers for you but hang in there - you are a great mom for caring so much.

hollie, I'm interested in what you posted about clotting and salt intake. Could you direct me towards some reading about this? I have a clotting issue as well and have never heard this. What type of disorder do you have? If you want to PM me, that's fine.

Maybe they grabbed the wrong vial? I just had a biopsy and had to request they get me the lidocaine w/o epi - when they got it, it was clear they looked pretty similar to the ones w/ epi. Just a thought.

kitsakatsa I don't really have any advice on this since I was married and had my child before I developed dysautonomia, but I just wanted to let you know that you made me laugh - seriously, your post was pretty darn funny. So even though this is a tough subject, it's great to see you still can have a sense of humor - that will help you through anything you decide to do. And you are correct in that newborns (and my 2 year old) are not up on the latest research and will pretty much do what suits THEM, not YOU!!!

Melissa, Thanks for the clarification - and you're right - I read ramekentesh's post too quickly. It did just say it can cause a drop in blood pressure - not that it was necessarily bad for people w/ pots. And, you're right again - without knowing the mechanism behind why it reduces blood pressure in people with hypertenstion, it's hard to say for sure what it would do to those w/ hypotension. But, very good info to have and be aware of if you are going to try it.

ramenkatesh, can you point us to the study that said it was not good for POTS patients? Since some docs seem to be suggesting this, it would be good to have something to quote.

I was under the impression that the small fiber neuropathy my doc has talked to me about is autonomic neuropathy.

Masumeh, I had the same feelings you are describing when I tried Florinef. I felt like I was disconnected from my body - I tried it for a few days and then had to stop. Nice to know my body is not alone in reacting that way!

masumeh - what did your neurologist prescribe to help? was it mestinon/pyridostigmine bromide? what were the side effects you had? I only ask because I take this as well but because of my sensitivities to medications I take the children's version - it's a liquid. That way you can take much smaller amounts and build up rather than taking the pill and trying to cut it. I just wanted to mention that option to you in case your doctor hadn't.

Tony I'm glad to hear that things with the doc went well - it is great that you already have someone who has been able to diagnose you and knows about these conditions. Unfortunately most likely this won't be an overnight recovery - but it's good to know you're on the right track. Hang in there...I know this isn't easy. I'm 32 w/a 34 year old husband and 2 year old daughter. I tried imagining my husband being the sick one and I am sure it's got to be very scary for your wife right now. Let her know that there is plenty of support around here for her, too, if she needs it.

Although I don't know much about this condition, have you checked out myasthenia gravis? I know it involves muscle weakness - particularly breathing muscles.

The 'sweat test' I had was the QSART - I think I posted on this before. This will describe it: http://www.mc.vanderbilt.edu/root/vumc.php...cs&doc=8004 I would assume this is what he will use for your daughter. When is your appt?

Good luck! I hope it goes well for you...this stuff is nasty! I've been on it for 7 months though...everytime I drop it's bad...if we went at a "normal" pace I ended up incapacitated. I'm waiting for the go ahead to drop again...by the big 0.5mg!!! Let us know how you make out.

HI Linda, I'm on prednisone, too - 17.5 mg/day. Wish I could drop as quickly as you! Anyway, I have not had the heart problems you are describing but that certainly does not mean that it's not related. I'm interested to hear your doc's take on it. I'm having glucose issues right now - but oddly enough, it seems to be the opposite issue of what prednisone is supposed to do. So my doc is trying to figure that one out.... Isn't this fun?