dsdmom

James, interesting that you mention benzos and ssri's. The ssri's for some reason made it worse for me and the benzos did not seem to help (although they did help with anxiety) me get the whole breath. I guess we're all different. I hope to find something soon to help relieve this. Out of curiosity, which benzos worked for you? My psych just suggested trying valium since that has the most muscle relaxant properties out of the benzos but I hate how they make me feel a bit more low bp, etc...

I know EXACTLY what you are talking about. This was my first symptom, shortly before the tachycardia started, 18 months ago. I went through every test you can think of and some crazy research ones to figure out what was going on but they could not find any abnormalities with my lungs, gas exchange, etc.... The pulmonologist and cardiologist I was seeing at th etime really wanted to help but didn't have any answers. Over time this symptom lessened and until just 4 days ago I had been doing pretty well. I have found that some drugs would make it worse or bring back the symptoms - drugs that nobody would have though would do it like Zoloft. But 4 days ago I started having this problem again. Friday was terrible - I felt like I was gasping all day. I am at a loss as to what caused this to come back except for the fact that I started a new drug last week for 3 days (Aciphex) and then was switched to Carafate. Although neither should cause breathing problems, I'm wondering if that has something to do with it. My doctor told me to stay on the Carafate but I took myself off and am going to wait for this breathing thing to settle down before I try it again. I hope it settles soon... Anyway, i'm sorry you are dealing with this too - trying to get enough air in is not a good feeling. To this point no doctor (including my neurologist) has been able to explain it. And yes, it is much better when I am laying down. Radha, how long have you been sick? And is this the first time you are experiencing this problem?

I think what you are doing is wonderful! I don't have any advice for you but just wanted to say kudos - and I wish I lived close by so I could take part. Good luck!

I believe there is one person on here (MNSue if you do a search) who has tried ivig. I am waiting to get tested for a specific antibody (AChR) that would indicate whether my doctor would recommend ivig. I know it can be tough but to be honest I would welcome any chance at a therapy that might help me feel better in the long run! Let us know how it goes if you decide to do it.

My doc said I could go up to 15g. Don't think I've ever come close though. I'm 31.

Jen, Check your other topic about options in Boston.

You definitely need to be tested by an autonomic specialist - a tilt table test would be a good start, but there are other things they should test for. I believe I've seen some people post about Mayo in Phoenix as a place to get tested. Good luck!

HI Angela, I certainly don't want to say that the Mestinon is definitely the culprit, but I had weird breathing issues when I first started taking it. I started with 15mg of the generic pill and built my way up to 30mg - but felt really weird the month that I was taking the pill. I spoke to my doctor and he switched me to the brand-name liquid version and I have done much much better on that. Did not feel strange at all. So I'm not sure if it was a brand-name vs generic issue or a pill vs liquid, but just something to think about if you are on the generic.

When I was younger and had no dysautonomia symptoms (mine is acquired) heat would really do a number on my stomach - I often would get diarrhea from being in a too hot environment. So not sure if it's entirely related to dys or if it's just something that can happen to anybody! Of course, I'm sure it would do the same thing to me now, I just try to stay out of it! LIke some of you, I went to the beach this weekend (in MA) and was there for about an hour each day - around 10am. Sunday was worse than Saturday but I really had to get out of there....I don't even remember what it's like to want to sit in the sun. Do you?

I see a neuro at UMASS Worcester who knows all about this stuff - Dr. Peter Novak. I know others on here see Dr. Freeman at Beth Israel in Boston. Dr. Novak may be easier to get in with than Dr. Freeman since he only recently moved his practice to Worcester so is building it back up (he used to be at Boston Medical Center). But they'd both be worth looking into for sure.

Angela, Did Dr. G suggest testing you for the antibody for nicotinic acetylcholine receptor (AChR)? I've been on mestinon a couple of months - it seems to help for me. I'm sensitive to meds though so am doing better on a lower dose than what was first prescribed - and I use the brand name syrup, not the generic pill - the generic pill gave me issues. Good luck!

Julie, I just wanted to say that I am from Boston and have spent a ton of time at Brigham & Women's and have heard WONDERFUL things about Dr. Castells. A couple of my specialists have raved about her - so hopefully she'll be able to help you!

Just want to echo what Nina said - I don't think this doctor is going to change his mind - he sounds like a real jerk. However, if you want to be heard, I would write a letter to the patient advocate at the hospital (and the head of this doctor's group if you can find a name) telling them about your displeasure...and be sure to cc: this poor excuse of a doctor so he knows how much he screwed up. Maybe even cc: your docs at the cleveland clinic so he has to eat his words. He may be more apt to care if he knows others are being informed.

I'm confused - the link you posted seems like it is a good thing...so why are they telling you to cut your dose?

That's the generic name for Mestinon. I started this drug over a month ago and am liking it. I react very strongly to drugs though so am on a very low dose. If you do a search on mestinon you'll probably find more information.

Nina - Did you test positive for celiac or did your doctor put you on the diet just to see if it would help?

I'm curious as to why many people are on gfcf or wheat free or dairy free or any combination thereof diets. I understand if someone has celiac or allergies, but I have seen people post about these diets and how they help with their symptoms. So I just want to know what the thinking is behind going gluten free/dairy free as it relates to dysautonomia. Thanks!

I started Lamictal but went off it after about a week - I did not have any adverse reactions but I decided to treat my newly diagnosed sleep disorder before I took any new meds. My dr started me extremely slowly

I've got TMJ - have had extremely intense and awful headaches starting in December. I'm finally doing better, but it's taken time and a LOT of adjustments to my mouth pieces. If the mouthpiece is causing you pain you need to have it adjusted...it can take several adjustments to get it right...good luck!

I used to enjoy my wine...before the dys started. But now, like Maxine, I can't even take a few sips. I find it ridiculous and I did it a couple of times because I just could not believe that a few sips would make me feel so awful but it really did...

I'd also recommend a sleep study - I finally had one even though I was SURE I did not have apnea (am not overweight, don't snore, etc) but lo and behold... I do have a sleep disorder. My fatigue has definitely improved since I've been treated w/ a cpap.

PAF = Pure Autonomic Failure. But I liked what you came up with too! I did a search on this topic here and think that Melissa knows a bit about this so am hoping she'll chime in...

From what I can remember, "coathanger" pain refers to pain in the back of the head/neck/shoulder region and is most often related to PAF. My question is for those of you who have it - how does it differ from what may feel like muscular tightness/soreness? I've been having a lot of neck issues that spreads into the back of my head and into my shoulders but I have been attributing it all to my TMJ issues since once they are massaged and loosened up I feel better. however, I am starting to wonder if this is something more and was hoping that some of you may be able to better describe what you feel. Thanks!

I don't think it matters what your blood pressure does for it to be POTS - I don't believe it necessarily has to drop. Zach, I can't answer your question except to say that POTS is a disorder of the autonomic nervous system. Unfortunately it's not as simple as just blood pressure and heart rate, since they are only two facets of this system - there are so many other things that could be going on to make you feel that way.

I used to sweat fine - but now I don't. I recently found out I have autonomic neuropathy (of vasomotor and sudomotor fibers) and my doctor said this is why I'm not sweating. I am guessing that it is contributing to my heat intolerance as well.