denabob

Welcome!! POTS does alot of "wierd" things to us and most of the time they are unexplainable by our doctors! If you're under extra stress it will make it worse. I have noticed that I "feel" things sometimes when my monitors dont show anything unusual. I dont know why but my body is still out of whack even though my BP and HR arent really that far off. I cant explain it but it does happen. Mostly though when that happens it's either when I've had an episode and am recovering or right before an episode happens. If you're losing fluids make sure you drink drink drink. Hydration is very important for POTS as you probably know already. Hope you feel better soon! Deanna

pacemaker for POTS? I read somewhere that POTS can actually be as a result of a pacemaker. Or am I experiencing brain fog?! Tilt Tests usually do show high HR but with NCS the heart rate will bottom with the BP mine did.

I most definitely agree about the "con" that goes on with the need for lawyers but the way I saw it was 25% of something is better than 100% of nothing! My lawyer was terrific and she really earned her 25% I went through two denials before hiring my lawyer but I thought I had enough evidence to do it on my own. I had been forced into medical retirement from the postal service and thought that would carry some weight, after all it wasn't my choice to no longer work. Surprise! They dont even completely read the files from the doctors until they are forced to. It is a LONG DRAWN OUT PROCESS but well worth the fight. Good Luck to anyone starting the battle! Deanna

I wonder if what alot of doctors are calling "manageable" is just the fact that after years we learn ways to cope better? We get tougher and tend to not complain to them as much because there's no use. I dont know if the symptoms are less severe or we're just use to them. Kind of like having a constant pain........ when I had knee surgery I didn't realize just how much my knee still hurt until it stopped, I had built a tolerance to it! We adapt and go on with our lives in spite of the symptoms but if they went away we'd realize just how much we'd been dealing with them after all, Do you think? Just my opinion I dont know anyone who made a complete recovery but then again you guys are about the only ones I know who have it to begin with!(besides me of course ) My specialist says that the best news he can give me is that POTS doesn't seem to be progressive. In combo with other dysautonomias that may not be true but alone it usually holds steady. The chance for complete "remission" is usually when it's onset is due to a virus or deconditioning. (from what I hear anyway)I unfortunately dont fall into either of those choices! Bye! Deanna

Welcome! As good as it is to have you I'm sorry that POTS found it's way to you! The only thing I can think of is POTS REALLY *****! But we are here for you to answer questions, lend advice, listen to you vent & numerous other things that you'll need to get out of your head! The best thing about this forum is that when one of us (or more) is down the others are quick to help pick us back up again! Anytime you see a new Dr make sure to write a list of symptoms to take with you. You get a little caught up with the forms and talking about your family hystory and then you end up leaving thinking "I wish I had told them about___________" Good Luck! Deanna

I have been approved SSDI and the requirements state that if you are unable to work three or more days a month that it is unsatisfactory attendance. Good news? Maybe....It is a LONG drawn out process and hard to make it without pay! I fought for 13 months -2 denials and a lawyer later I'm approved! Start with getting a copy of your work attendance and all medical records you can! With SSDI you must be off work for 5 months before they pay anything now depending on your other income you may be able to get SSI until SSDI would kick in. I'm sorry I dont have much good news but you really HAVE to list EVERY thing that is wrong with you no matter how remote! My doctor said to make sure that you (me at the time) mention specifically the chronic fatigue symptom that occompanies this illness ,also has anyone diagnosed NCS? Do you pass out? SSDI recognizes NCS but not POTS on it's own ( which is the reason for lawyers) I have both ..I'm thirty and otherwise "healthy" How ironic is that ? to be called "healthy" Details as small as the amount of water we have to intake a day -which comes with increased bathroom breaks and the number of times a day when we need to raise our feet and rest - carries alot of weight with their doctors. Good Luck...If I can answer any more questions let me know! Deanna

I'm sooooooooooo very sorry!!! I hope all improves soon! They say "bad things come in threes" sounds like you've got yours out of the way for a while You know....when you're down and on your back there's nowhere to look but up?! Pray( not sure if you've ever mentioned your "religious" preferences or not but in an instance like this-or any other for that matter- God is the only one who can help!! I'm sending you hugs and prayers and hoping you'll feel them both. Do your best to relax (easier said than done I know) turn the IVF over to the Lord we never know what his plans are for us! Worst case senario: friends of mine lost two children to rare genetic disorders and then found out that her life would be in jepardy if they tried again! Now they are adopting a child who might otherwise not have had a good life! Silver linings arent always clear but they are always there! Hope you feel better soon! Deanna

Roy- Dont worry much about "the crazy issue" I didnt list the pyschological part in my claim but they found it anyway My lawyer sent me to a counselor for a psyc evaluation. I didnt hear any more about it until my final descision was made. I got upset with the judge at my hearing and told him how much I didnt want to be there proving to them that I'm disabled because I DONT want to be disabled...I want to work but cant. I was upset not hostile but crying. I guess I made an impression because on my approval letter (that came 1 week later) they awarded me SSDI based on "NCS with symptoms of POTS and a mild mood disorder!" Just be honest and upfront and they will listen! Of course it took 13 months for me to get to the hearing level-2 denials prior to that step.and another 3 months to start getting paid! Deanna

as far as the hr goes... I've had days when I maintain for the first four minutes then WHAM spike up! The one thing I can say that probably any doctor would agree with is ...POTS is very unpredictable! symptoms wax and wane and are different in most of us! As the others have pointed out not all POTS patients pass out. I unfortunately do! But I have also been DX with NCS and that's where most of my passing out comes from! This forum is a great place to turn! I've gotten many benefits from it! My previous electro.cardio doc said that even if I went months without symptoms that it would almost positively return fantastic huh? that's when I found out that I was fighting a losing battle for my job! It all works out in the end I guess! Welcome and Good Luck! By the way follow Merrill's advice because those things really do help! Deanna

Cry away!!!! I'm sorry your sick! Just make the most of the down time.... get a good book and try to not panic when you get emotional the symptoms get worse! Snuggle up with your dog and try and feel better soon! Drink LOTS of water and becareful in the shower hot water will make symptoms worse. I bought a hand held shower attachment for when I'm down I can sit in the tub and still enjoy a shower! I can dish it but I'm not good at taking it so count on returning the pep talk sometime! That's what is good about this forum when one of us is down the others are there to hold our hands! Hugs!! Deanna

Hang in there thay almost ALWAYS deny the first request! It took me three tries and a really good lawyer ( I'm in WV) 16 months later I was approved!Not on POTS alone though...I have NCS so they approved me on that with POTS listed secondary. I'm not sure it's a discrimination thing but more in general how they handle most illnesses especially one that is so unknown and varies so much among patients. The best thing for you to do is research it as much as you can yourself use info you gather from this site and the ndrf look for research articles on POTS and help your lawyer (when you find one) you'll more than likely need to educate him/her first...I did! The Social Security office will provide you with a list of lawyers in your area because believe it or not they have to approve of your lawyer! Now that doesnt effect how well they represent you its just that they pre-approve a fee. Also be careful what you sign... make sure the lawyer only charges if you're awarded settlement! Make sure you mention the Chronic Fatigue that accompanies POTS even though it's not CFS that symptom carries alot of weight! Good Luck! Deanna

Welcome Mindy & Rita! I wish I had some profound words of wisdom for you but I'm afraid I dont. In some patients POTS does get better but in most of us it doesnt. The good news though is that MOST of the time if it is only POTS it isnt progressive. The hardest thing about this illness is learning to cope. I still sometimes feel like a prisoner in my own body. I'm 30 and have been sick for about 2 yrs. POTS diagnosed this year. I am on disability now (ego strike!) but after a while you prioritize your life and learn what to avoid in order to function. Learn your food triggers and small tricks that we all use to function (salt-lots!, water-lots!,rest-but not too much/muscles need to stay strong,support-we DO understand how you feel!) Go to the home page of this site and read "what to avoid & what helps" I'm a "fix-it" type person I enjoy taking care of other people so for it to be my own body that is letting me down is an issue with me. I cant fix it and I have to rely on help from others more than I'd like to. But I've learned through the help of this forum that I cant dwell on the "down-side " of my life I have to search for the positives! Depression is a big part of this because the illness is so frustrating. But the key is to not give in to it and push for a normal life as much as possible. You will do better when you adjust your life to your new body! We dont know why we were chosen for this but we do know that it could've been MUCH worse. If we have to have a chronic illness at least (thank the Lord) it isn't fatal! Sorry I'm preaching Turn to us with anything! Good Luck to you! Deanna

More proof of how tuff we are!(or at least of how tuff YOU are ) We get so use to pushing through that even "normal" illnesses and pain cant stop us! Me/myself am preparing to pass some kidney stones OUCH!!! I've never had this before and BOY is it a new experience!! The pain comes and goes but is crippling when it comes. I'll pray for you and you pray for me will you? Our tummies would appreciate it! Hope you do well soon....I suffered for about a week before I called my doc. I get tired of Doctors and just would like to be healthy for a little while or at least fake it for a change! If it isn't one thing it's ten Keep us informed Deanna

As far as I've been told POTS wont "hurt"(for lack of a better word) the rest of our body. It wont wear out the heart even ( or so I've been told) I dont think anyone really knows for sure what causes this and there is a wide assortment of treatments. While breastfeeding you should be careful of anything you try!! I wish you the best of luck!! Deanna

That sounds like PMDD which is a question for your gyno...how about your moods? are they out of whack also? call the gyno and tell them because they have new meds for this syndrome (mostly antidepressants believe it or not ) the headache and bad cramps seem to go away with this treatment not sure why but it helped me! I had this long before POTS but i guess it could be related as I dont really know what my onset was!

laila :COPD complicates things as far as POTS meds. my mom has POTS symptoms but she also has COPD so they wont treat her for POTS! Beta- blockers can be hard on your lungs if your not otherwise healthy. Be careful when trying new ones! One test that I didnt see mentioned was to rule out addisons disease- it carries the same POTS symptoms but is a failure of the adrenal gland which is dangerous! But can be treated and controlled with a pill! As far as the right kind of doctor ,I dont know that there is one excpet that they are knowledgeable of dysautonomias! I have seen a neurologist who wouldnt know what was happening if he watched me fall. Then on to a GOOD neurologist who ordered a Tilt Table Test ( which I hear is rare for neuro's) Then on to two different cardio's and a electrophysiologist cardiologist now I see an endocronologist ( that I'm pleased with so I'll stay with!). You just need a doctor who if they dont know will try to send you to someone who does instead of labeling you with anxiety! Good Luck! Deanna

Good Luck ..........I too am going to meet with a dietician soon I want to find my food triggers and try to lose about 10 lbs at the same time. I know not to try it without help or I'll end up in a big POTS hole! Let me know what you find out! Deanna

Good point! I do still drive (not when I'm ill) but I dont work any more. I do know some of the neighbors who arent real far away ( maybe a mile). Some are his ex-inlaws but they have welcomed me. He has been divorced for 5 yrs and I get along fine with his ex-wife and her family. I grew up in the country and look forward to going back to that life...I realize now that I'm ill that it could make things more difficult. But my kids will be able to go out and play without as much worry.And just sitting on the porch swing watching the deer stroll by is an excellent stress reliever! My friend Lisa ( who some of you have read post with me) thinks she has found a compromise. She lives out of city limits but not far from town( you know out where you have privacy but still with the comforts like public water and city mail delivery)and has found land for sale near her. It is actually a nice piece of property about 2 1/2 acres(just enough) still waiting to see the price! But my honey has agreed to go look at it....now it may still take a year or so to sell his house and buy either a modular or build on the new site but he's interested! I am cautious enough to not buy things of this nature together until we are sure this will work but I wouldnt mind buying the property myself and then it would be mine. Now that my SSDI has been settled I have the back pay money so I could buy it. We've decided that we will split the household expenses in half. I think we will still pretend to be paying what we always have and save the rest of the money in savings. Sorry to ramble but can you tell I'm getting excited?! thanks for listening! Deanna

earthmother : that's a good choice of names for you! you are a "mothering" type ...always there when we need you with inspiration and support! I appreciate your kind words. My pro list is tremendous and my con list only has one item on it. Inconvenience for other people. I'm a very practical type of person and actually OVER think every detail....which isnt always good to do but we have discussed this the whole way along and we are up front and honest about everything! The fact that he would consider selling his house for me tells me I'm making the right choice! I'll try to not let my fears take over.....I'm just learning to tell the difference between gut instinct and fear! Thanks! Deanna

I'd like the link for the saline kit please?! My allergies are a pain and I cant tolerate ANY antihistamines, never could!! When I get real desperate I take half of my 11 yr old daughters zyrtec which is still enough to wipe me out for the day and trigger POTS symptoms! Of course allergies wear your body down enough to be a trigger by themselves....but then again what isn't a trigger? Deanna

Ireally have to say that your parents must be proud of you ! you seem like a very responsible young lady! Your determination will help you in all aspects of your life! You Go Girl!!! Steph: No prob! I know you werent attacking me we are on the same side...I get just as angry! Our lives are difficult enough without ignorance adding to it! Deanna

I just realized that you guys have no clue about where I live Brain fog!!!!!! We're all from different parts of the world. I live in WV and I'm in city limits right now.....on the way home from work for my best friend! Where I will be living is about 20 minutes farther out and in the country which in the winter is an issue but not a big move completely! Briarrose: WOW!!! 6 kids on your own ......you need a trophy or perhaps a purple heart hehehe I commend you I struggle sometimes with two on my own! Mightymouse: Thank you for your input I look at it that way too but I wondered if I was "justifying" ya know?! Thank you all for babying me!!! Deanna

I'm looking for a hand hold! I'm moving in with my boyfriend in June and he is terrific. My girls love him. Now I know living together isnt a good influence on my kids but I have been married twice ( how's that for a confession?) I was in an abusive situation the first time with their dad and the second time I think I was just lonely and trying to fill a void. When I got diagnosed he wasnt there for me and had a real resentment for my youngest daughter he turned out to be physically mean to her and I WONT tolerate that!! Here I am finally happy with myself and doing fine living alone with my girls and meet a terrific man ( didnt know they existed ) we've been together for almost a year and he loves me and would do anything for me! I now know that you dont fully know someone until you've lived with them. He wants to marry me but I want to be careful( this time will be the last!!) Now that I have got you up to speed here's my problem......... My parents and my friends(who are my lifeline when I'm sick-while he's at work) dont like the idea of me moving. They dont have a problem with him they have a problem with where he lives! It's out in the country ( which is a benefit for me) but I see their point it will make it harder for them to get to me in a hurry. He is thinking about selling his house just to move me closer to town but that takes time. Meanwhile my lease is up in June and I dont want to sign for another year! It's almost spring and we might be able to move before next winter. I dont like depending on others to help me but I have to sometimes. So even though I know I'd be happier with him I feel guilty about making things harder for my "helpers". Any advice?! This wouldn't be an issue if it werent for POTS!!! yeah, I'm bitter not that it helps! Thanks Deanna

I've never read anything about pot causing POTS either but with POTS comes a drug sensitivity so it may trigger symptoms. Did you have a virus? If POTS is caused by a virus the chances of remission are higher! Nobody not even Doctors can tell us what causes it so dont beat yourself up about it , it just happens! Hi Ernie! I think you're my fellow pink pather relative.. am I right? If so then you'll find this forum to be a good support as well as ndrf. These people are a terrific support group and they make you feel very welcome! glad to see you here! Deanna

Good point Steph! But I wont give up on educating people (or at least trying to )on how to deal with us- most definitely our children. I guess I didnt realize or even consider the struggle that other chronic illnesses had to face also Thanks for the reality slap Back to Lisa: Have you been to the dynakids web site yet it is geared to kids with dysautonomias? They've probably experienced alot of the same things you are! I wish you luck because this is a subject that I too am sensitive about! Another good reason for us to publish our stories and try to reach people with the reality of this illness! Deanna