Poohbear

Sounds miserable! I'm so sorry!! Of course I'm not Dr. but the first thing that came to my mind is that you might be fighting some sort of intestinal bug. I've had several times in my life where I had heart rate and bp changes and weird symptoms similar to what you describe--sometimes it's been at the beginning of a virus of some sort and became apparent it was such when I got worse and at other times it wasn't as obvious initially but ran it's course. I don't know how you are but when I'm not eating or drinking enough (protein especially) then my heart rate gets much nuttier. If you think you have a virus you may not want to eat much solid food but consider a trial of Ensure clear (it's like a juice) or other similar product to get your protein. You might see if that settles the GI issues which might lessen the discomfort you feel at the same time.

Sounds scary. Is there a specific reason why you felt you needed to check your pulse at that point? If you were feeling faint then it might be that your heart rate and blood pressure dropped quickly. I wouldn't worry about it too much if you are feeling reasonably ok. I hope tomorrow is a better day for you!

I'm so sorry that you are having a rough time. You are not alone--there are many people here who can relate to the frustrations and stress that you are experiencing. Take care of yourself the best you can and keep fighting and looking for answers when you have the energy.

Thanks Rosey! We still have at least two more days of the 'extra' extreme cold but by Friday we will at least reach 20 so that should help. I'm thankful that at least my furnace is still working!!

Thanks everyone! gjenson, yes, I have checked my temp several ways and I'm getting pretty consistent readings among all sources. yogini, thanks for your support! Today is no better but the outside temps are worse today--this morning was -23 with wind chill -54 and even now (our warmest time of the day) is -14 with wind chill -42. My Dr doesn't want to see me and honestly, I think just stepping outside, regardless of how bundled up I would be, would probably make this worse at this point. sue, your points about thyroid are interesting. I have hashimotos and my Dr reduced my dosage a few months ago (long story, but I had to switch brands at it caused a lot of problems)--when she lowered my dose my TSH went up and was abnormal high. So about 6 weeks ago she changed my dosage again. I go back this week to recheck but honestly, I expect it to be back to my normal at this recheck. It's hard to know what causes what sometimes. I have had more sensitivity to the cold this winter than in years past but these are also the coldest temps we've seen in about 17 years. I think, my current problem is primarily an unhappy ANS but perhaps the thyroid is adding or worsening the problem. I'm sure you guys understand---it's frustrating to feel so horrible (and scary sometimes too...especially when you live alone) and do everything you know to do with little success. I am exhausted because I have slept very little in 4 nights dealing with all of this and then you deal with red tape and politics of Dr's offices and nurses who don't relay the correct message to the Dr and on and on it goes with a buildup of frustration. I've been crying most of today which makes my self esteem plummet (I feel after these many years I should handle all of this better). I'm just tired of the constant hurdles and discomfort and the lack of caring from many 'professionals'. Although one or two specialists have been GREAT but it's not an option for me to see them right now (they are in a different state). Anyway....it's nice to know at least people here understand!

That is correct and that's why the nurse I spoke to was so concerned. I think, now that I know what is happening I can change enough things to handle this better BUT the extra extreme cold we are having right now is life threatening cold to everyone. It's when my temp falls into the mid to low 95's that it's the worst. Trying to hang in there but this is tough. I'm used to dealing with heat and the problems with that but this is end of the spectrum is new territory to me. I mean, I've lived in the far North for almost 4 years now but this is the coldest winter we've had so far where MOST days our wind chill averages -10 to -25 ALL the time and it's been like that since before Thanksgiving.

It's been a while since I've been on the forum so....hello again!! I am in one of the state's that is dealing with extreme cold--as I type this it's currently -18 with wind chill of -47. It's been an exceptionally cold fall/winter. About 3 weeks ago I started getting episodes, mostly at night but they can happen in the day time too and seem to be worsening as the weather gets colder,. I will suddenly feel hot and at first I thought I was having hot flashes and going into menopause but now I'm pretty sure that's not the case. I will get wave after wave of this--like every 5-15 minutes and it sometimes lasts for hours. I peel off one layer and then 5 minutes later I'm shivering cold. I don't really sweat but sometimes my skin will feel warm to the touch. Eventually, I checked my temperature during one of these episodes thinking maybe I was coming down with a virus and was running a fever. I was SHOCKED when the thermometer read, 95.4. I thought it was a bad battery so I went and go the other two thermometers that I have in the house and they all registered within 2/10th to 3/10th of each other. I started tracking it and realize that when I get that hot sensation it's when my body temperature is dropping. I adjusted my thermostat so that the temp would be more stable day and night (prior to that I had it dropping about 8 degrees at night) which has helped a little but still not preventing these drops. I spoke to a nurse today who said I'm close to officially being mild hypothermia (95 is the official # for diagnosis). I dress in layers, I have the heat running but it has trouble keeping up in this extreme cold, I have quality wool socks on my feet, and plenty of warm blankets. I also have heat packs I can put in the microwave or other similar products that heat up. It seems the best thing to bring my body temperature up is a hot bath but once I'm out of the tub I get symptomatic within an hour if not sooner. The nurse made me promise to go into the ER if my temp falls 95 or below even if it's just briefly but so far I haven't quite reached that. It's crazy that when my body temp drops that I FEEL like I'm burning up and want to peel off all my clothes! Any suggestions? Anyone else dealt with this low of a body temp staying indoors? I'd feel silly going into the ER. I mean...I AM miserable but all things considered I'm reasonably stable given the circumstances and I'd hate to go in if all they did was say 'there's nothing we can do...go home and try to stay warm'. It's so cold right now that I'm afraid I would just get worse having to leave the house for the drive from here to the hospital.

No worries! Thanks for letting us know....I just didn't know how else or who to contact other than to post here so I hope that wasn't a problem. You guys do a great job!!! Still...the spammers are everywhere these days--the pitfalls of the internet. Keep up the great work everyone (and a big THANK YOU to all those behind the scenes making this a safe and smooth site)

I got 3 emails yesterday from Dinet that look to be spam. The message shows: Please Visit Our Blogger http://mykitchen-4all.blogspot.com/ Regards, The DINET Administration and Moderating Team Anybody else having this problem? Admin team...if you haven't already, you may want to change your gmail password for dinet in case someone has hacked it.

Are they still in St. Paul area or are they at Mayo?

I'm certainly no Dr. and I would recommend you talk with a cardiologist who understands EKG's in POTS patients. Having said that, I will share my experience which is that I frequently have "weird" messages and notes on my EKG's ; especially when they take it and I'm in tachycardia or having a POTS flare. I have learned over time that often times there really is nothing wrong (other than POTS)....it's just the tech who reads the report has no idea what my diagnosis is. He reports any potential finding or concern no matter how minor and it's up to the Dr to really determine if it's a true concern in that specific case. So....certainly question your Dr. about it and he/she should be able to give you a sound explanation but it's likely that it's nothing critical for you to worry about.

Ahhh....nice to see some good, quality controlled studies/articles being put in print....especially after the disappointing one from another well known group earlier this week!!! I love that this article addresses many issues, including quality of life issues, in a thorough and concise manner. It's a great overview for any physician working with patients with various forms of dysautonomia.

Alex, I too have noticed the last few articles seem to be biased toward anxiety and deconditioning. I have seen a big shift over the past few years in Mayo, Rochester--combination of factors but disappointing none-the-less. I will be anxious to read the full article. Re-reading the abstract helped me some....In the end I think they are still saying that there is more unknown than known in these illnesses. They also point that there were few differences between severely deconditioned patients and non-deconditioned patients so that kinda 'un-does' the earlier statement in the abstract. Chaos, I hear ya....True, there are many people that are deconditioned, but they don't have the excessive heart rate and/or drops in blood pressure to make them get to a Dr. That's the crazy thing....why don't these researchers see that? That there are MANY people in society who are deconditioned but they aren't SICK with rapid heart rates and passing out. I had a Dr. at one of these top places ask me at a follow up appt. years later why I wasn't better. I was told, "Most of our patients improve in 5 years why haven't you?"--All said with a blaming, accusatory tone. There are some great Dr's out there but there are also some who aren't so great because their ego's get in their way and many people don't realize the politics, red tape and bias that some research (and subsequent papers) have going in to them from the beginning.

So sorry Racer....I understand your frustration as I have been through this type of thing consistently for about 10 years now. It is not easy and you are not alone. I hope that you are able to keep the search up for someone that will be willing to help you. For those that asked about supplements.... There is Elecare, Ensure Clear and other products at this website http://abbottnutrition.com/. Also, for those who need high protein but don't tolerate milk very well this may be a good option.... http://www.unjury.com/store/protein/reg/products.shtml (they even have a sample box you can buy so you can try multiple flavors and see what you like best). Of course....you should check with your Dr. before starting any of these to make sure it's something good and safe for you...some have lots of sugar so wouldn't be good for diabetics and some (like unjury) might not be good if you have kidney disease--so be safe and check with your Dr. but I pretty much have lived off of these things when I couldn't tolerate food.

The article states, "We recently reported that deconditioning is almost universal in both patient groups" I would like for them to define how THEY define and determine deconditioning. Sorry folks....but I'm so tired of hearing people try to blame patients for this because they are 'deconditioned'. I agree that regaining or maintaining a conditioned status can help improve symptoms if/where possible however, there are a LOT of people who were in great shape when they first got sick. In my own situation I was out in the heat, in marching band 4 hours a day in the summer and multiple hours a week in other seasons and felt like crap but I persevered (and was able to), I was in gymnastics, a runner and an active, on-the-go teenager when all of this was becoming worse. I have been fatigued and tired since the day I was born and I've always needed tons of sleep, I've had a very high heart rate my entire life but I was NEVER "deconditioned" until well after I was diagnosed and the syndrome kept escalating and invading other organ systems.

The POTS clinic is not the same as the Pain Clinic at Mayo ....two totally separate clinics at Mayo. POTS clinic is part of the Autonomic division in neurology.

I love the additional input from everyone....ya'll keep writing I find it helps me to write....it is sometimes a way to laugh (after crying of course) the frustration out. It's a safe way for me to vent my anger and frustration. I haven't been on the boards in a while because I was doing some better (still nowhere near normal though) and just needed a break from consciously thinking or focusing on the illness (I don't know if that will make sense to anyone) so much. But....I have been in a serious flare for a couple of months and have very little support locally to me. Last night I was re-visiting some old thoughts and ideas and this thread popped into my mind.

Bump...thought some of the newer folks may appreciate this old thread...

Medicare does not accept medicare assignment; they will file claims for you and there are a few exceptions but you, as a patient, are generally responsible for the full amount of the bill regardless of what Medicare pays or allows. Mayo clinic clearly states this on their website.

FYI for anyone interested on this site. There have been recommendations in the past and kind words expressed about Dr. Goodman at Mayo. Just wanted to let you guys know that he is leaving to go back to Scottsdale in a couple of weeks and will be leaving the Mayo Clinic Rochester area so he is not taking any new patients in MN.

Have you considered Vanderbilt Autonomic Research Clinic? They are much closer to you. I've been to both places and especially when it comes to care over the long term I've gotten much more help from Vanderbilt than Mayo clinic.

See if this link helps you any... http://www.hrsonline.org/Policy/DevicesDru...ble-Testing.cfm

Tara, I don't know if this will help ease your mind or not but Dr. Deering and his PA's all understand the diagnostic criteria of POTS and NCS. In your case, I would not worry about coming off the effexor. There are likely other meds they are planning to use during the TTT to illicit a response, if needed, in your case. If it makes you feel better, I would recommend FAXING a note (this way the Dr or other qualified person to give the right answer will see your note) reminding them what medication and dosage you are on and asking for clarification if they want you to come off of the med for diagnostic purposes.

You could try Dr. Thomas Deering in Atlanta who has some knowledge and would be local to you but if I were in your shoes I would opt for evaluation and consult at Vanderbilt----particularly Dr. Raj since he is a cardiologist and ANS specialist. He might need to get other cardiac evaluation done but I have always had great experiences with Vanderbilt with ANS specialists and anyone I saw in the "normal" cardiac center. St. Joseph's in Atlanta also has some cardiologists familiar with POTS but at the moment the names are escaping me. Emory is NOT the place to go for what you are dealing with.

Just wanted to add a few thoughts on this subject. I have a confirmed Mito diagnosis and have learned a lot the last few months. 1-Do check with your insurance. Most insurance companies will pay as long as the symptoms you have indicate there is a suspicion of the disease. 2-Check with your local Muscular dystrophy office--Mitochondrial disease is under the umbrella of MDA diseases. If you can be tested by a MDA Dr familiar with muscle biopsies and testing then at least a portion of the diagnostic work up is covered by MDA grants. 3-Just FYI--blood or saliva testing for Mito dna testing is not as thorough or as conclusive and muscle biopsy. If you really want the best chance at an answer, go with the muscle biopsy. 4-The muscle biopsy can be rough for a couple of days and I guess it depends on where you are having it done. Mine was done by a physician who does several muscle biopsies a week and knows how to properly process the specimens etc. Mine was done using local; I did not have general anesthesia. In my case, the discomfort of the biopsy was well worth the answers I got and wasn't nearly as bad as most people made it out to be.