Poohbear

I hope you are able to get the help you need soon. Can you get a second opinion and meanwhile, while you are waiting and figuring all of that out document/ keep a chart of your symptoms and corresponding heart rate and blood pressure. Don't focus too much on it....maybe check everything when you first wake up, before bed and then in between only if you are feeling bad or having symptoms. This may help you see things that may be triggering symptoms (for example..large meals and feeling bad after) and it will give the Dr's something to go on as well. It can be a difficult issue because there are some overlaps with anxiety and the hormones that flood our bodies with anxiety but what many Dr's don't understand is that there is something not working right with your body. That's true even with people who have panic attacks vs. an ANS disorder. Bottom line is regardless of what's going on with you, you need a Dr who is working to help you ---whether it's "anxiety" or not. So, look for another Dr if you feel you aren't getting the treatment you need. I too have some odd breathing problems. I think I have a mild case of asthma and since my body is so sensitive to things it reacts to things in the environment without my easily being able to pinpoint what's going on. I know I'm highly sensitive to mold and I always have more trouble breathing when it's humid, after rain etc. I think it's enough to make me have problems but not enough for the "typical" medical field to see it as their "typical asthma" case. Good luck. Keep us posted

SallyAnn, I'm so sorry for your loss. On top of that I know it's hard to deal with the family issues. I think you did the right thing. If you really felt a need for YOU, yourself to be there then I agree with Lisacolumbus reply and that's what I would do too---go the night before and take a supportive friend for ME to help me out if needed. If you feel you continue to get negative stuff from family then maybe you can decide if it's worth writing a letter and explaining our condition, make them aware that mornings are too difficult for you....that maybe in the future they could keep this in mind when making arangements for something they expect you to attend. I know it's hard but try to focus on yourself and what your needs are regardless of what your family says or does. ((((Hugs))))

I don't know exactly what you guys are talking about but I know my efforts to research the grant issue is just dead end walls at this point. So....if there is something else I can help with let me know. Especially in the month of September I have some time to help out. In October it will be crazy for me though with preparing to move again and going to Vanderbilt for research (which by the way, is occuring at the same time so I have to find people to move my stuff even though I won't be here).

I was told the same thing that mom4cem was told by my Dr's.

Hi Roselover, Hope this helps you some! http://my.webmd.com/drugs/drug-6177-Reglan...ame=Reglan+Oral I took Reglan a long time ago for about 6 months and had no trouble with it except it didn't do anything for me. Hope you have success with it!

Gayla, I wish you didn't have to go through this....you need your energy for your health, not having to deal with the broken system of insurance and government that we have!!!! I agree you should pursue the fight as long as you are able! Good luck!

Hockeymom, I certainly do not regret my travels to either Mayo Clinic. Having been to both clinics I can say that MY personal experience was I got more out of the Dr's in Jacksonville, FL than in MN and my overall experience was much nicer, much more quality time with the individual Dr's in Jacksonville and the staff was friendlier. On the flip side there was one test that Jacksonville no longer has the ability to do (the sweat test) so I had that done in MN and it did give some valuable info. So far, I have tried every medication out there and have not gotten any relief. Either the meds don't work or I have side effects that make me worse instead of better. In the end, the Mayo clinics have not had any new ideas or suggestions. The benefit of going was that they were able to rule out some things that might have been causing my problem. Because of their knowledge, testing and equipment they were able to do much more than a "typical" Dr from a hometown. Though I left upset (because I badly wanted a "fix") it was SO helpful to know there were certain diseases/conditions that I did not have that had maybe caused this and it was so validating to have the labs, test results etc to "prove" just what and how messed up my body is (because not all of my Dr's really believed all that was going on until they saw Mayo's reports). I agree with Steph, even though the follow-up is horrible there, one good thing about it is I have a lot less trouble with other physicians taking me seriously now. I am currently set up to go to Vanderbilt in October for research. I do know they won't accept anyone under 18 for research but they do have an outpatient program as well and they may see her there. In terms of cost, I've been really surprised at how well my insurance paid with Mayo. I've been twice to Jacksonville and once to MN and I haven't always had the same insurance. In fact, this year when I went I had Medicare and I was shocked at how much they covered!! I still had a bill that was about $1500 for my part. To me, the most stressful part of the expense is the traveling/hotel expense because you have to have that money up-front whereas Mayo will work out a payment plan with you. Let us know what you decide

check this out http://www.dinet.org/how_is_pots_detected.htm With what you are describing, I'm wondering if Catacolamine testing would give you some answers. I've had a mild version of what you are talking about and over time I've realized, in my case, those sensations are from improper levels of hormones being released and/or not being cleared properly. My experience is that the blood test is much more accurate than urine (make sure if you have this done that the facility knows how to do the test right---blood taken initially, again after 20-30 minutes of laying down with quiet rest then they stand you up for 10 minutes and take it again). Talk it over with your Dr of course. I definately agree with Melissa's earlier comment--- Mayo, Vanderbilt, NIH, John Hopkins are all good places for testing but once you leave you need a local Dr who will work closely with you and be willing to help you. Having a Dr who is willing to help you and learn on their own is the most priceless gift you could have

Jennifer, TX- It's not exactly the same, mine will last for days at a time and feels like it's in continual spasm

I'm sorry you are having to deal with this! There are other options aside from Dr. Grubb and though I've never been to him myself I've been told he doesn't do testing anyway. My personal opinion, since this is the case with him, is you are better off going to someone who does testing. Get the "official" diagnosis, rule other conditions out first that could be causing or aggravating your condition and then move forward from there. Where are you located? Are you in the U.S.? If so, what part or what state? I think the general consensus is that it's harder to find Dr's if you are on the west coast. I have been to both Mayo Clinic in Jacksonville, FL and Mayo in Minnesota. My personal experience was that the Autonomic Specialists in Jacksonville were more helpful. But, I got more out of Cardiology in MN. There were pro's and con's to both and in the end I got lots of answers about what my body was and was not doing and they ruled out LOTS of things that a "Average" Dr either can't rule out (because they don't have the special tools, equipment) or don't know to rule out. You may want to check out this site as well http://www.mc.vanderbilt.edu/root/vumc.php?site=adc. Vanderbilt has recently been doing research and they are currently taking people. Talk with you Dr and see if maybe you qualify for inpatient or outpatient referal there. You mentioned the pain...is that you main symptom or do you have others? What meds have you tried so far?

If you are finding yourself getting more and more anxious about what your body is or isn't doing then it sounds like you need to find a way to distract yourself from it. If that isn't working then maybe you could talk with a professional to see if they can make any suggestions for you. I only get that way when I'm in the midst of unusually bad autonomic storms and I'm by myself. Sometimes watching tv helps or talking on the phone with someone. I don't know where you live but there are lots of ISP's that offer fairly inexpensive monthly charges. People PC is one that comes to mind --they charge $10.95 a month. Can you search around for a new provider that you maybe could afford? Hope you are feeling better soon!

Sounds like you are going through a lot. I hope things improve and your parents are able to resolve their conflicts peacefully. I am glad that you have access Dr's who understand POTS. Good luck with testing and keep us posted.

Happy birthday! I'm glad you were able to enjoy the day. My wish for you is that in the year ahead you will have improved health and/or more effective ways to manage your illness. Meanwhile, keep doing the best you can! HAPPY HAPPY BIRTHDAY!!!!!!!!!!!!!!!!!!

Katherine, I too have had this before. It seems to come and go. It ranges from being uncomfortable to being unbearable. I think what puzzles me is that there are things that happen with this that want to make me think there's a digestive issue going on but at the same time, there are too many other symptoms that would indicate muscle issues vs. digestive (example--my neck and shoulders get really tight). Maybe one aggravates things and gets the other going??? Who knows!!! I too have noticed eating really cold things helps. Eating hot things (like soup or coffee) makes things worse. A friend of mine who is a massage therapist says the cold helping is an indication that it's involuntary muscles invovled because voluntary muscles respond to heat and invountary to ice. The other food item that seems to help a lot when I'm like this is pudding. I've noticed I've had hiccups more often with these spells as well.

Opus, I hope you are okay. Update us on how you are both with the hurricane and you Dysautonomia when you have a chance. Jill & Emily, I sent an email directly to Opus letting them know there is a message here and people were wanting to hear. Maybe between the post and the direct email we will hear something soon.

Genetics

I'm glad to hear you are okay and will keep your extended family in my thoughts and send them well wishes too. If you're like me....don't watch too much CNN at one time, it's too depressing

Karyn, my thoughts and prayers go out to you and your family as well. Lisa, thanks so much for all the info to try to help us locate loved ones. To everyone, thank you for your support. It's a tough emotional time. I do hope all our AL members are safe....please check in when you can. Meanwhile, I'm trying to focus my energy on not falling apart but rather, moving into action. I'm trying to organize a food/personal items drive through my church where we will ship supplies directly to the open shelters. I know red cross takes $ but they don't take food to distribute because it's costly to ship, hard to get in etc. Plus, I need to do something to occupy my mind/time so this is a way for me to do that. This afternoon I kinda had a crash but I'm trying to sleep a little, work a little. It's not the best routine but it's better than not sleeping at all and therby getting myself sicker. Thanks again everyone for your care and compassion!

I can't sleep. I am worried and it is aggravating my POTS symptoms, which is frustrating because I don't want to worry when there isn't anything I can do about it. I don't want to be my own cause of aggravating the POTS. My two best friends live in MS (around Jackson area) and they are okay; they have no power and can't get anywhere, tree damage and such but given the situation they are doing well. One of my friends has relatives in Gulf Port, MS who were not able to get out in time. The roads were grid locked because these folks weren't prepared for the storm since it took a "last minute" shift. Anyhow, the area her relatives live in is devastated and we don't know yet if they survived or were able to be rescued. There are reports of bodies seen floating in the water but rescue workers still can't get in to do searches. Some of the casino's had flooding reach the 2nd and 3rd floor in that area. There were about 30 people found dead at an apartment complex in Biloxi. Some are dead, some are trapped and even many shelters have damage and no power---very devastating. Please keep these people in your thoughts and prayers in the days and weeks to come. I've lived in "hurricane territory" for a long time and I've never seen anything like this in those areas. I'm hearing horrible stories from people in MS about the devastation. I was around when Andrew hit but this is much worse than that was. Thanks for your thoughts and for letting me share this. It's heavy on my heart and I know you guys are supportive.

Thinking of you and can't wait to hear an update on how things are going.

Good luck! Hope you are feeling some positive benefits from it soon!

Your situation brings tears to my eyes every time. I am so thankful that some of your prayers have been answered and you are getting some good news in the midst of all of this. I will keep praying that the cancer will "run out of town" Jan, just take things one day at a time; that's all we are given anyway. I know you will find the strength to cope with whatever comes your way and we are here rooting you and Jeff on!!

Thanks for sharing a positive experience but I do wish you didn't have to go through it in the first place!!

sorry you are going through this! I do hope you will feel better soon!

I've been in the midst of this process lately as well. I also have Medicare and there is currently a LOT of confusion. Medicare has recently changed their criteria for who meets the definition of needing medical assistive devices. Definately go for the higher priced item for Medicare to pay. I personally am trying to go for getting an electric chair because it's power assistive (I don't have the stamina always for a manual one), it's smaller (not as wide) as a manual one so even if you aren't in a handicap accesible place it's easier to manuever around. They have electric ones that will fold up similar to a wheelchair so they are much easier to transport. In terms of the walker. I was told (in my case) not to get one. Because I pass out so much they said a walker could actually be dangerous (it won't stop me from passing out but it would possibly be "in my way" as I fall and cause further injury). Plus, I agree with others on this....look around..you can find a used one reasonably priced I bet. The other thing, from what I've read is for Medicare to pay for a wheelchair (under the new guidelines) you MUST need assistiance with the main activities of daily living, which Medicare defines as grooming, bathing, toiletry and feeding. I too am going through a physical therapy seating evaluation. Good luck!!