nantynannie

Hi Pots Parent,

This has happened to me several times. It seems to happen the most right when I stand up, one of my legs will give out and I either fall to the ground, or if I get lucky, I catch myself. Also, my legs turn to spaghetti quite often and feel as if they are going to give out, this also happens when I start yawning excessively. You should know though that I also have back problems and some of the docs have attributed my legs giving out to my back, but others have said no way. In other words, it is unexplained as of yet, but I find it curious that someone else on the board has the same symptom... I hope you get some answers soon.

Ann

Thanks for the info on the cost!

Ann

Hi Guys,

Would anyone mind sharing how much this testing costs? Also, is Arizona Mayo any good? Thanks.

Ann

Hi Jesse,

I live in the LA area and I see Dr Yan-Go on a regular basis. She has Dysautonomia herself, as well as Lupus, so she is somewhat experienced and sympathetic to our issues. She also specializes in sleep disorders which is why I chose to see her over the other doctor you mentioned. I did speak to the other guy over the telephone, but he did not accept any insurance and wanted cash. Dr Yan-Go is with UCLA Neuro, which is a highly respected Hospital and Department. She is a bit scattered but highly intelligent, definately worth a try.

Ann

Hi Sue,

Just wanted to let you know that it was uplifting to read your post about your dad keeping up such a positive attitude. I hope the new arrangements work out for all of you.

I can definately relate to the blood being sucked out feeling, but unfortunately I don't have any suggestions to help. Lying down is the only thing that works. As for the weight gain, the only thing I can suggest is to try an SSRI that does not cause your appetite to increase. Maybe Cymbalta. It is a new one. Sorry I couldn't help more. Take care,

Ann

I hope no one thinks this is rude, but why do we go to these places? Do they help us a bunch? Should I think about going to one of these testing facilities? Thanks for any answers.

Ann

Thanks everyone, it is great to know that I am not alone. This thing is driving me crazy though, because I can't "feel" my legs when it happens and I haven't stopped yawning since last Saturday! I've tried not to yawn so that I don't get the yucky feeling, but then I forget and do it anyway...I have to put my legs up too, and even lay all the way down to feel normal.

It is nice to know that you guys are all out there and that you can understand how I feel. I can just imagine calling someone at my old job and saying, "hey, do you know how it feels to yawn all the time?"

Thanks,

Ann

Congratulations!

Ann

Hi Sunfish,

I have been diagnosed with Autonomic Neuropathy as well as Peripheral Neuropathy. The only testing in that area was TTT and EMG. I have POTS and OI with the slow gut motility, temp disregulation etc. I get the adrenaline rushes with the POTS sometimes, but not all the time, and I get hypotension sometimes, as well as hypertension sometimes, when standing. I just read the article posted by Katherine that says there are two kinds of POTS, but I don't think it is as clear cut as that. My docs think that my medical problems are autoimmune in nature...don't know if this helps to answer your question.

Ann

Hi Kim,

It is possible that people do not want to get involved in this subject. I am not sure, but I hope your husband's research paper goes well.

Ann

Hi Radha,

I just wanted to mention that the alpha hydroxy is probably making your skin flakey and the lotion build up is probably part of what you are seeing as flakes. I have used the large body wash cloths available at drug stores. They have a built in cleanser and are slightly moist. They smell nice and do not leave a lot of residue build up. They are sort of like a giant baby wipe, but for adults.

Ann

I am sorry that I do not have any ideas as far as fixing the problem, but I can tell you that you are certainly not alone. I have gone from the norm of 98.6 to 97.1 to a constant 96.8 in the last two years. I am always freezing cold when others are warm (unless, heaven forbid, it is hot outtside and then the heat kills me). I am certain that it is autonomic in nature and I don't think there is anything we can do about it. One thing though, right in the middle of being cold, my body will heat up very quickly for no apparent reason and I will have to strip off all of my clothes and put ice on my body. During those times my brain goes wacko too. This whole thing is a mess! Hope you get some answers...

Hi Kim,

This is a very controversial subject! I know that there will be many differing views.

My opinion is this...I am all for stem cell research AS LONG AS THE STEM CELLS ARE GIVEN VOLUNTARILY from umbilical cords given at the time of birth by a birth mother, or from adults (I understand that adult stem cells are not as useful as umbilical cord cells.) I am not willing to sacrifice a life for a cure to make my life easier, better, longer, etc.

Ann

Hi James,

Of course, the drinking...

but I think the laughing thing might be "normal." It seems for me that any time a hormone is released in my body my heart rate can go up. Of course, it does not always happen, but it is always possible. Once that happens, the adrenaline rush is not far behind. Once it is no longer a surprise, and you know what it is, it is easier to deal with.

Ann

Hi Everyone,

I searched the board for this today and did not find much. I was wondering if anyone else yawns excessively? Today, I yawned about 40 times in the grocery store. The yawning is not that big of a deal, but when I yawn, it feels like all of the blood is going out of my legs. They feel like they are disconnected from my body. Almost like RLS but 100 times worse and movement does not help because they are very weak, almost like spaghetti legs. I am hoping that someone else out there knows what I am talking about. Thanks!

Ann

Hi Sun,

Where in California are you? I found a doc in Southern California from the DINET website. Her name is Frisca Yan-Go. She is at the Westwood UCLA. I have the strangest list of symptoms (or so I thought) and it turns out that almost all of them are from Dysautonomia according to this doc. Hope this helps.

Ann

Hi Rama,

When I am having the adrenaline rush periods I find that I am very hungry all of the time. I think you are correct. I have been thinking that the adrenaline ups my metabolism somehow and it eats up all of my calories.

Ann

Hi Linda,

Emily pretty much nailed it. I get very shaky and hot and cannot think straight. Nothing seems to relieve it. The adrenaline just keeps rushing and my heart does not stop racing. When I had my tilt table test I was shaking so much toward the end that they stopped my test. Part of my report said that I had an "excess catacholamine response."

Ann

Thanks everyone!

Hi Lynda,

Just talking about the new studies that show an increased risk of suicide and other risk behaviors with SSRIs, especially when first starting. I was thinking that because you suddenly started having a reaction such as anxiety that you should look into it. Probably nothing to worry about, but with this condition, you never know. Take care.

Ann

Hi Linda,

It sounds like you should check with your doc on this one. I have also experienced these symptoms with my SSRI (Cymbalta) but nothing so severe that I was worried. Many of us have strange reactions to meds, but you should carefully monitor your reactions and take them seriously and discuss them with your doc, especially with the new warnings regarding SSRIs. I have the type of reaction you discussed throughout the day, not just from meds, but from adrenaline surges that are caused from dysautonomia. In regards to your other symptoms and questions previously posted, it seems that of the 40 strange symptoms that I have, my doc says that 30 or so are caused by dysautonomia. Remember that POTS is just one presentaion of dysautonomia and you could have several things related to dysautonomia that are causing many of your symptoms. Take care and I wish you the best with your upcoming work up!

Ann

Hi everyone,

I know that everyone takes something different, but I was wondering what suggestions are out there to bring up blood pressure a bit without bringing up heart rate and adrenaline? I tried beta blockers, but the beta blockers made my adrenaline go crazy. My doc said she might try calcium channel blockers next. Anyone know about these? Thanks, and I hope everyone does okay with the warm weather approaching...best wishes for you all.

Ann

Just wanted to let everyone know that I have been on this new drug for about two weeks. It is supposed to treat depression and neuropathic pain. Though it does not seem to help my pain, it does seem to make my thinking a bit clearer. Nothing magical, but just enough to notice. Haven't noticed any drop in blood pressure or any negative side effects regarding the dysautonomia.

Ann

Hi Amy,

It sounds like neuropathy to me. I am surprised that your doc did not recognize the classic signs immediately. I think you should get another EMG study. Be very careful, because you can hurt yourself with such diminished feeling in the hands. I hope things improve for you...

Ann

Jessica,

I forgot to add, LOTS of water. At least a liter and a half a day.

Ann