firewatcher

I am sorry. It is a sad and lonely feeling and I think we have all been there. I was told that I was lazy and out of shape for 20 years, and my Mom said she felt so guilty once I was finally diagnosed (actually MISdiagnosed) with asthma. They will understand...eventually. Chin up, we all support you here. <<hug>> Jennifer

Sara, THOSE RECORDS ARE YOURS!!!!!!!! How dare she keep them from you. GGGGgggrrrrrrrrrr, the arrogance of these know-it-all, holier-than-thou, I've got a huge amount of debt to pay for my education so I won't bother to learn anymore because I already know everything....Nnnaahhhhhrrrgggggg! Don't look at the heart-rate monitor, don't look at the heart-rate monitor, breathe....... O.K., I'm O.K. now, Call that sweet lady's office tomorrow and ask to speak to medical records, then ask them to fax you the test results from that test. Then call a woman you know and start looking for a new OB/GYN, or go to an Endocrinologist. I think you'd get better results from an Endo, they will know about the interactions and what does what and when. Those of us without the super-secret doctor decoder rings need to stick together. I support you! Jennifer

Sara, Good luck and let me know! I'm coming back with low everything (Estrogen, Testosterone, LH and FsH) my OB/GYN says it's all just "low normal," while three endocrinologists are saying "barely adequate." No one can tell me if the POTS thing causes the low hormones or the low hormones cause the POTS thing. My two oldest (and hopefully most experienced) Endos say that the two are NOT related, but I don't think anyone knows at all. How low was your progesterone? Jennifer

Hi Chrissy, I was just thinking, have you seen this article? http://hyper.ahajournals.org/cgi/content/abstract/45/3/385 It is about POTS with a mast cell involvement, maybe something? Jennifer

OH man, does this sound familiar! YES, you can actually get a sinus infection from vasomotor rhinitis, anything that swells and blocks the nasal turbinates or the openings to the sinuses can create a closed, warm, moist environment for bacteria to breed and make you miserable. I had sinus infections EVERY month for many years until I found a neti pot. I irrigated my nose with a liter of saline four times a day for a year. I still have sinus infections, but they are asymptomatic ( I don't feel the pressure or have the greeny goo and I can breathe through my nose again.) My Primary Doc is working with my allergist on this, and questioned a fungal infection instead of a bacterial, since a month of high dose antibiotics did nothing for me. I have a friend who has a recurrent fungal infection in his sinuses that he is actually allergic to! (He is allergic to the fungus living in his sinuses, talk about miserable!) I have managed my symptoms through aggressive nasal irrigation (as much sea salt in the water as I can tolerate, it shrinks the nasal membranes, I know, I'm pickling my nose ) and a steroid nasal spray (rhinocort) during allergy season. An important component to the nasal irrigation is the drying of the nose after the irrigation, you can not just leave all that saline up there, bend over and blow your nose gently, turn your head and do it again, and again, and again! I feel for you, and I know the pain you feel! My allergist told me this week that sinus surgery won't stop vasomotor rhinitis, just ANS control and trigger avoidance. If you think that you have a mast cell disorder, you could ask your doc to try a mast cell stabilizer like singulair and see if it provides relief. Good luck! Jennifer

Hi Melissa, Don't jump the gun on the low blood sugar thing, I have read that those home glucose monitors are notoriously off on the low end of the spectrum. You may have reactive hypogylcemia, but don't use the home meter to make that determination, let the docs do a formal test. I hope you are feeling better, it is amazing what tiny pills and powders can do to the human body!

If Chrissy is having "sinus infection symptoms" without a positive skin test for allergens, it is probably vasomotor rhinitis (another lovely ANS issue!) I just talked to my allergist about it: If she reacts, like I do, to strong smells, or cold air, etc. It is Vasomotor rhinitis and not allergic rhinitis. My allergist says I have both, and a CT scan showed 3 separate sinus infections that I did not feel symptoms for. I was checked for MAST cell disorder too, but unless an episode happens during the 24 hour urine collection, it will probably come back negative. My general practice doc mentioned a possible vitamin D deficiency that he wants to test for, apparently if you are hyper-immune in your reactions (like I have to my allergy shots,) you may be short of vitamin D. I have not had that test yet, and after some really bad reactions to "natural supplements" I don't just take anything anymore without consulting him first. Good luck, and let us know how Cleveland goes.

Hi all, Has anyone had bad reactions to prednisone? I had to take 50mg after a bad reaction (large local swelling and redness) to my allergy shots, but the prednisone was worse! I got dizzy, severe unilateral headache, pale and sweaty, tachycardia and nausea. Is this an ANS thing? My allergist was shocked. Anybody else do this? Jennifer

Having just been through this myself, I say look for a new doc. Ask a doc that you like and have already (mine was my OB/GYN) for a list of docs that they like and trust, or who they would see if they were in the same situation. Get all your stuff together and start "interviewing" doctors. Tell them up front that you were unhappy with your old doc and looking for a new one AND that this is merely an interview to see if they can work WITH you. I found a wonderful doctor this way! Then, write that letter. Wait a week and reread it and edit it. Do this until you can distill it down to just the facts about how you feel and not be accusatory or deliberately offensive. It took me six months to do this. I had been referred by doc #1 to a psychiatrist who actually did not think that this was "all in my head" like doc #1 did. I let him proof the letter before I sent it to doc #1. Your first doctor needs to know why you left their practice and that what they say will get back to the patient. If this doctor could not be open and honest with you, then they have no business being your doctor. A doctor/patient relationship is very much like a marriage or priest/flock relationship, there has to be absolute trust: they are responsible for you health and possibly your life. If doc #1 thought you had anxiety issues with your chest pains, then they should have addressed that as well! Good luck! I managed to find three really good docs and an excellent psychiatrist (who cut me loose saying how impressed he was by the way I was handling all the uncertainty and obviously physical issues.) There are excellent docs out there (they are just people like us,) we just have to find them.

Howdy! I just came across this article on faint counter-maneuvers and how they work: http://jap.physiology.org/cgi/content/full/99/5/1697 Good luck! I hope they work for you!

I get pressure in my ears too! Every time I bend over or burp, etc. If I try to valsalva, my ears squeak! When I bend forward, all the sounds get muffled and it feels like I'm diving in deep water. Is that a BP thing too?

Hang in there and do what you can, not what others think you can do. I understand completely, so feel free to vent! If you push too hard, you know what you will get and that won't help you, it will only frustrate you. My son is also having homework troubles, it is a battle almost every night; your niece as a tutor sounds like a good idea. Your daughter may respond to her while she does not respond to you, I find that is the case with my son. Good luck, and many positive thoughts!

Hi everyone, How exactly do you get dx'ed with vasomotor rhinitis. I think I have it, but I also have some really nasty allergies. How can the ENT tell the difference? Isn't it a dx of exclusion: if you don't have bacterial or fungal sinus problems, and you don't have allergic rhinitis, then you have vasomotor rhinitis? Or is there a test to tell the difference? THanks, Jennifer

google Vasomotor Rhinitis. It is the ANS version of chronic sinus infections. Apparently the blood is sent to the nose and swells the membranes, mimicking or even creating a sinus problem and giving you a stuffy nose.

Maxine, I am sooooo glad that is over! I know you are too. I will continue to pray for you and a speedy recovery. Take it easy. Thanks for letting us know you are OK! Jennifer

If you have a good doc, send them a fax about what happened to put in your chart. I send faxes, because then there is no "he said, she said..." or miscommunication. I do this to my doc if I have any new symptoms and he will call me and tell me to come in if he feels like it is necessary. Once, I had completely forgotten that I had gone to the grocery store and let all the food spoil in my car. If in doubt, tell your doc, let them make that decision.

Hi All, Anything yet? Has anyone heard anything?

Have you had your thyroid checked? I went hypothyroid after my second child, you may be going hyper. It would explain the weight loss and tachycardia. Just a guess.

First day down! I am exhausted. I spent three hours at work today (really the first day since the boys' summer break) came home for lunch, worked for an hour at home, picked them both up, took one to tutoring, then to dinner...did I mention that I am exhausted. Living did not seem this hard before I know that I am going to wear out fast at this rate, but it is the least that I can do. How can you do less than that?

You are in my nightly prayers as well. It is not up to him to diagnose you, just to TREAT you for what others have diagnosed! Just hold together a little longer, I know, it feels like pulling teeth (yup, all that was intended. ) Have someone post for you if you are too groggy to do it yourself...let us know! Jennifer

Hello, I have been on Klonopin for 4 months now. I've been taking .25mg once in the morning and 1/2 that again at night. It was supposed to help the tremor, but worked for the constant headache instead ( I have never had any anxiety.) It has become less effective the longer I take it, and I would like to either up the dose or just get rid of the headache and come off it entirely. My primary doc says that while it is addictive, it is mostly with those who "self-medicate," or "take it when they need it." He wants me to come off very slowly (over 6 weeks) and says that I should have no withdrawal effects, but I'll let you know. My titration off starts the last week of September, so it's coming up. It has never sedated me, but there is not much that does (even some anesthesia.) As long as you only take it as prescribed and your doc monitors you I hope it would be OK. I think that a lot of the treatment of all this ANS stuff is to throw medications at it and see what works. What symptoms are they hoping to treat with it?

Let it out. Everyone here knows pain. It is NOT fair, and it never will be, but if venting makes it better, do it. I will listen, empathize and offer what I can, as will everyone else here. We are here for you, just don't give up hope! Tie that knot at the end of your rope and swing...if you do it upside down, all the blood will rush to your head and you'll feel better! Much support. Jennifer

Dawn, Are you taking your BP just once and getting these high readings? What happens if you take it a couple minutes later? Or sit down? My BP and HR spike like that with exertion that is not sustained. If I start walking and keep walking it will stabilize, until I stop then it crashes. Everyday stuff, like stairs and dishes and cleaning will spike it, especially if my arms go above my head. Good luck, I know it can be scary, but the body is an amazingly resilient thing! Keep a log and talk to your doctor. Jennifer

Less symptoms? Yes. I still have a daily unilateral headache and fatigue, and my hands and feet still tingle and go numb; but the tremor and HR surge were gone. The BP gets narrow if I don't drink enough despite what the endo said about the DI. I've tried not drinking as much, but that makes everything worse and I start to lose weight (am I the only one who weighs less at the end of the day than after breakfast?) I guess the stress, both emotional and physical were just too much today.

I know this sounds like a moment of weakness, but I was not expecting a single afternoon to start this up again. I have several concerns (one son's failing math scores and the other's anaphylactic food allergy all on top of a brand new school) that are not health related; but with my upcoming trip to Vandy in November I am going to have to come off all my meds. My Primary doc wants me to titrate off the Klonopin over 4-6 weeks and be off the Inderal for 2 weeks before the testing. I am back to peeing all the time that I am upright since the Endo wants me off the dDAVP, and he also wants me to try clomiphene and metformin to try and jump-start my ovaries into functioning again (which should bring back the migraines.) Can't I have some boredom PLEASE?!! I am not prone to anxiety, but today has me worried.