Really Confused And Need Information Please

[bwstuckey57]

I am so confused. I think I posted here before, but my brain does not work anymore and I can not remember ANYTHING!!! I'm sorry if someone has a similar post, but hopefully you all can send me information and help me figure out what I need to do to GET SOME HELP AND RELIEF!!

Like most everyone here, I've been to a bunch of doctors. After many wrong diagnosis and possibly some that are correct, but NOT my main problem. After spending THOUSANDS of DOLLARS (that we didn't have!!) and going to "one of the most respected clinics" in the country, I was told that "THIS IS MY CROSS TO BARE", "THE HAND OF CARDS THAT I'VE BEEN DEALT", "YOU ARE JUST GOING TO HAVE TO LEARN TO LIVE WITH IT". During this conversation, he also explained to MY HUSBAND that my autonomic nervous system is OUT OF WHACK and overreacts and goes from one end of the spectrum to the other. It mainly overreacts and doesn't stop reacting to stimuli when it's supposed to. I sweat prefusely, my blood pressure goes extremely high, my heart rate goes crazy during the tilt table (regular one at the Cardio office) and stress test, etc. I can't go into a grocery store and get a few groceries without sweating and dripping wet with sweat, plus dizziness, headaches, shaky, weakness, burning stinging skin and red burning rash all over. I can no longer handle HEAT AT ALL and become so hot and sweat and sick that I have actually passed out and gotten vomiting ill and then spend all the rest of the day in the bed sick. In pain and sick and weak and so hot that I feel like I am going to burn up, literally!!!! I go through this cycle and then end up with the chills so bad that I shake and shake and nothing seems to help. I can't turn on a heater because I then burn up and it starts over again.

During the summer, I had to keep the AC low and even with this had to have the ceiling fan and another fan on me AT ALL TIMES. I also had to put another fan on the side to blow on me from that angle. If the temperature around me gets above 68 or so, I start having the BURNING up feeling and can not handle how hot my body temperature gets. My family FREEZES and I am burning up. For some reason I get a bad case of chills late in the afternoon or early in the evening most days. I can't stand up for more than 10 minutes without the symptoms beginning and I now know when to go lay down before I get really really sick. If I don't take care of myself by laying down, I GET SO ILL AND STAY EXTREMELY ILL FOR DAYS AND DAYS. BED RIDDEN, ETC. I don't understand what all is going on and don't know what to do.

WHAT SHOULD I DO? WHERE SHOULD I GO TO GET HELP AND SEE IF SOMEONE CAN HELP ME CONTROL OR STOP THESE SYMPTOMS? I WENT TO MAYO BUT NEVER SAW AN AUTONOMIC SPECIALIST BECAUSE I DON'T HAVE POTS (I guess that's the common problem?). Whatever I have is NOT THE COMMON THING, but someone has to be able to help me. If you know of some place and specifically someone that would be able to help me, PLEASE PLEASE LET ME KNOW HOW I CAN GET IN TOUCH WITH THEM AND GET AN APPOINTMENT. I CALLED ANOTHER DOCTOR THAT I SAW WAS HIGHLY RECOMMENDED FOR TREATING AUTONOMIC DYSFUNCTIONS, BUT THEY WOULD NEVER RETURN MY PHONE CALLS. I DON'T KNOW IF I'M TELLING THEM TOO MUCH INFORMATION WHEN I LEAVE THE MESSAGE OR IF THEY ARE JUST SO BUSY THEY DON'T WANT TO BOTHER WITH SOMEONE THAT IS OUT OF STATE. I am willing to travel anywhere and I also know that there is NO ONE around Louisiana that specializes in these disorders. If I am wrong, please let me know where I should go.

JUST AN FYI: I ONLY LASTED 12 MINUTES IN THE SWEAT TEST, BECAUSE MY BODY TEMP WENT TO THE 102 DEGREE MARK AND I WAS ALREADY SWEATING BEFORE I WENT INTO THE SWEAT BOX. I COULD NOT BREATHE AND WAS SO WEAK AFTER ONLY 12 MINUTES AND THE SWEAT WAS RUNNING INTO MY EYES AND EARS, ETC. THE TECHNICIAN SAID THAT I HAD BROKE THE RECORD FOR THE "FASTEST TIME" EVER, BUT they marked my test as being NORMAL (I guess because I sweated??). My problem is that my autonomic system OVERREACTS and so I reached the sweating and temperature limit faster than MOST people After the test, my hustband wheeled me back to the hotel room and I had the WORST CASE of CHILLS EVER. My head was about to BLOW UP and I was shaking soooooo bad that my husband got all the covers and extra blankets and turned the heat up in the room until he was sweating. Of course, I ended up sweating really bad, but still shaking and weak from chills. Part of me was FREEZING COLD AND THE REST OF ME WAS BURNING UP and SWEATING until I dehydrated. I HAVE PROBLEMS WITH DEHYDRATION BECAUSE I SWEAT SO MUCH I CAN'T DRINK ENOUGH TO KEEP UP WITH THE LOSS. I END UP HAVING BLADDER SPASMS AND ABDOMINAL PAINS AND HAVE TO GO TO THE EMERGENCY ROOM. When I was in Rochester, I just took the bladder spasm medications and if that did not stop it, I was going to go to the emergency room there. The medicines and plenty of liquids worked. The next day (I was so weak and sweated just sitting up) we told the doctors, but they didn't seem concerned or note anything in the records from what I can see. They just said that the TEST RESULTS were normal so I must have gotten the chills from something else.

PLEASE HELP ME UNDERSTAND WHAT I SHOULD BE DOING AND WHO MIGHT BE ABLE TO HELP ME WITH THIS BEFORE IT GETS ANY WORSE THAN IT IS NOW. I HAVE NOTICED HOW MUCH WORSE MY ILLNESS IS NOW THAN IT WAS LAST SUMMER AND LAST YEAR. WE CAN NOT AFFORD TO KEEP OUR HOUSE AT 68 DEGREES IN THE LOUISIANA HEAT, AND HOW MUCH LOWER WILL I NEED TO KEEP IT AS I GET WORSE? I used to be able to handle temperatures down here without getting ill and now I can't even sleep at night without a fan on me, even in the wintertime with temperatures in the 30s,, 40s, 50s, etc... Our house temperature in the winter CAN NOT exceed 66 degrees without me sweating and getting so hot and weak and headaches and heart and blood pressure and etc. problems. My family is sooo cold and I'm burning up. My hands and feet get soooo cold when the rest of me is comfortable without sweating or burning up, but the burning stinging rash is almost always there, especially if I sit up or stand or move around. Cold water and blowing fans help the burning hot stinging rash. If you feel my skin when I am hot and sweaty, most of the time when I have not stopped and laid down, I am cold and clammy feeling, like a heart problem, etc.

HELP HELP HELP HELP HELP!!!! THANKS FOR ALL AND ANY INFORMAITON... SORRY FOR THE LONG MESSAGE, BUT I'M SOOOOO TIRED OF BEING SICK AND NOT ABLE TO DO ANYTHING... I WANT TO GET SOME TYPE OF PHYSICAL THERAPY OR CONDITIONING EXERCISES, BUT I'M NOT ABLE TO BECAUSE OF THE BLOOD PRESSURE AND HEART BEAT ISSUES AND SWEATING/DEHYDRATION, ETC. Would a Cardiologist be able to help me get the appropriate activity without my worrying about my heart or stroke, etc.???? I tried physical therapy and my blood pressure and stroke symptoms made them stop it. Then I went to the water therapy, hoping that it would allow me to get more activity, but I still had the problems and they wanted to call for an ambulance on more than one occasion because of my blood pressure and stroke like symptoms. I was so dizzy and weak that I couldn't sit up for a long time.

[Kitsakatsa]

Have they checked your thyroid?

Have they checked your spinal cord for a tumor? The autonomic signals are transmitted through the spinal column.

Kits

[Tammy]

Do they have you on any type of medications that will settle down your over-reactive nervous system? I was where you are at for almost 3 years and then my doctor decided to give Klonopin a try. It really made a difference. I also take Xanax as needed and Atenolol. I believe some people here take Clonidine for the blood pressure spikes, but you have to talk to your doctor about any of these drugs and see what they think. I had run into many doctors that didn't understand my condition and therefore were not willing to prescribe these type of medications, but found one that is sympathetic and knows my symptoms are 'physical' and not emotionally related.

I'm still beddridden at times, and homebound due to weakness, but the sweating, chills, racing heart, nausea, etc., are much less frequent. Far from gone, as I just spent Christmas night and day with these spells, but I got through it without going to the ER by using these medications. You could also try benedryl, which is over the counter, as I've read some people have found a little relief using that also.

As for temperature changes, even with the meds, I have to always be in a room that is approx. 73 to 75 degrees... anything different than that, I will be painfully cold or deathly hot.

Hopefully you can find some type of med to help settle things down a bit.

Blessings

[kayjay]

I think the normal part of your sweat test is that you to sweat. It is really worse if you can't sweat. I had the same test and was slow to start sweating even though my body temp was way high to begin with. I did eventually sweat and thus my test was "normal". They need to make sure that you can sweat.

I have hyperadergenic POTS and before treatment (klonopin, beta blocker) I sweated just from breathing!! It is horrible. I would also go to bed freezing and wake up in a puddle - soaking wet sheets and pjs.

I cannot tell you how much meds have helped. Beta blockers do a lot of good things for people with hyper POTS. Klonopin at bedtime helps me sleep. I go to Mayo too would you PM me the name of the Dr you saw? I have to go back and when I was called I was told that the POTS clinic is closed untill they replace a staff member.

I saw dr. Fealy. He was fine but not super helpful. It has taken a long time to feel a little better. I was told that I would have this condition for the rest of my life but after 5 months I am doing a little better- Can't go to the market myself either still .

[erikainorlando]

I am not going to be a big help here either but what happened during the TTT? What happened to your hr? Certainly sounds like some orthostatic intolerence...if not full blown POTS. I am sure there are other forms of dysautonomia as well..I have terrible problems with the temperature as well. It is a horrible illness but bb's help me a lot. I have learned to modify my life too...which really helps. I just can't do what I used to..slowly is the key word to my life!! I go very slowly...easy...rest often..

But you need to get the docs on board. Just keep pushing until you get answers. You sound like a lot of us here.

Good luck.

Erika

[flop]

my blood pressure goes extremely high, my heart rate goes crazy during the tilt table

if by "going crazy" you mean your heart rate went fast durring the TTT then maybe you do have POTS. In POTS the HR on TTT goes up by 30 or more beats per minute OR goes up to more than 120/min. For example if your HR lying flat was 57/min and it went up to 98/min during the tilt then that would fit with POTS.

Do you know the numbers for your BP and HR durring the TTT? Do you have a copy of your test results and doctors notes? (It is worth requesting copies of all your charts and keeping a file at home). If you ask at the appointment / soon after they are less likely to charge you for copies of charts.

The high BP and symptoms you describe sound rather like hyperadrenergic POTS where there is too much adrenaline rushing round your body. Some people have had lying and standing blood tests for catecholamines to check for this, but many people are treated for hyperadrenergic symptoms without blood test confirmation. I think that the hyper group often feel better on beta-blockers and or benzodiazepines to calm the body down.

It sounds like you need to find an understanding doctor who is willing to work through this with you. Medication for all types of dysautonomia is rather hit-and-miss, what works for one person makes another feel awful. Mostly you just need to follow a trial-and-error approach until you find the best medication combination for you.

You can actually go to any doc for dysautonomia problems. Some of the big centres are hot on testing / research but not really interested in follow up and getting meds sorted. Often a good PCP or internal med doctor can become your dysautonomia doctor - they needn't have even heard of dysautonomia if they are willing to learn with you.

If you haven't already looked then check the DINET physician's list to see if there are any doctors near to you.

Another useful tool is the recently released DINET documentary "Changes: living with postural orthostatic tachycardia syndrome". If you find an understanding doctor, they could learn a lot from watching the DVD.

Good luck on your journey,

Flop

[juliegee]

Hey Tigergirl-

Sorry you've had such a time getting a proper DX and treatment plan. You are NOT alone here. One member just posted about a POTS DX after 20 years...

I just wanted to throw a crazy treatment idea out there. It's helped me tremendously. I also sweat an enormous amount, esp. when I exercise. I'm doing a boot camp now & some women look fresh as daisies (no sweat at all!) at the end of class and I look as though I've just gotten out of the shower- even when the temp is 40 degrees. So embarassing

I hear that you sweat all of the time (not just during exercise.) But why not try s-l-o-w-l-y exposing yourself to more strenuous activity. If you can walk around the block easily, add one extra step. Slowly expose yourself to more and more every day. This has helped me expand what I am able to do & my body no longer perceives things that were once insurmountable- as being difficult.

I ran a 5K in 29 minutes today with a pretty severe groin injury. Ouch! Working up to more and more physically has desensitized my body's overactive response. Hope that makes a little sense. Tiny baby steps towards healing. There was a point when I couldn't walk around my block.

Looking into meds to slow down your overactive response may be a great idea in the short term- until you can begin re-teaching your body to stop over-responding. Finding a sympathetic doctor, who will guide you on this journey, is my wish for you, Tigergirl. With your history, it's especially imperative that a doc approve & oversee any exercise plan. One extra step a day. It adds up. BTW, "Eye of the TIGER" on my Ipod got me through that last mile today. Nothing like a Rocky anthem to help you push through the tough stuff

Hugs-

Julie