SarahA33

I'm sorry to hear that things haven't improved for you yet.  My attorney focused a great deal on the medications and their side effect's. For example, I take Ativan for both a central nervous system depressant & anxiety, so he focused on the side effects like memory loss, unsteadiness, fatigue, etc. that would affect my ability to work. Also, focused a lot on my POTS symptoms and how they affected my daily life. He told me one of the most important pieces were the letters from my doctors. They said I was 100% unable to work, a brief description of POTS and the symptoms I suffer from as a result: tachycardia, cognitive impairment, insomnia,  pre-syncope, hypertension & orthostatic intolerance, anxiety, GI issues, migraines.  included the specialty's that I'd been seen by prior, the medications that I'd tried & failed.  It's going back a few years but I believe my lawyer asked me to have my pharmacy print & sign my rx records going back 2 years to show adherence, ER visits, specialists & pcp reports, testing. You may have seen these, but just in case --

http://www.disability-benefits-help.org/disabling-conditions/dysautonomia

http://www.disabilitysecrets.com/conditions-page-2-55.html

http://www.ultimatedisabilityguide.com/medical_listings.html - take a look in the cardio section

Sorry for the delay,  mechamoss,  I didn't see this right away.  

This program has been discontinued due to lack of participation.  Here is a link to a topic that members have created in the past:

http://www.dinet.org/forums/topic/24549-anyone-from-south-central-pa/

Sarah 

Hi,  tcp...  Have you ever looked into abdominal migraines?   Also,  not sure if this past thread will be helpful to you: 

My gastroparesis has been awful lately. The pain is horrible.  My gi doctor scheduled a breath test to look for any bacteria. Have you had one of those?  

Hi, Jaddico, I'm a patient at CC and my experience has been the same as the one's described above. I've seen Dr. Jaeger for a few years now and he's wonderful.  He's thorough, honest in a way that's not condescending, and compassionate.  He hasn't overlooked or brushed off my complaints or symptoms and referred me to necessary specialist's there who are equally as wonderful. They have a great autonomic lab & staff there as well.  My POTS has improved dramatically since becoming a patient there.  I wish the same for you!  So sorry to hear about all you've gone through. I hope this new year brings you improved health! Sarah

Mechamoss,  I've merged the 2 posts in one for you, all of the comments that were in the original topic are now here.   You just have to edit your title now appropriately.

here is the dinet site with ssd info:

I'm in new York and would be happy to send you my attorneys name if your in ny.

I was approved for POTS, chronic migraine, epilepsy. I used an attorney when I first applied, and was approved the first time. I think the reason is because the lawyer knew the correct way to fill everything out. My brainfog was very bad at that point and I wouldn't have been able to do it all by myself.

I had many records like Katie did, and each time I went into the hospital or had a test ordered by a specialist, i made sure my PCP had all the records and reports. I will look up some more links for you.

Sorry to hear that...My fiance tells me to play the lottery because I always seem to be included in that 1 in a million category. Haha!

To lower my potassium, I took an Rx, kionex in solution form.  I haven't experienced bradycardia so it appeared to have worked. I will have more labs this wed to see how my electrolytes look.

I hope you get to go home, being back in your own space with your pets and family is priceless. I'm sure your goat misses you!

Did they put you on iron for the anemia? Since your in the hospital w/germs, maybe you picked up a little virus or something that could've lowered your WBC?

Ancy - you poor thing, so sorry you had this set back.

My potassium has been high the last 2 times it's been checked - and I'm taking Florinef, which is known to deplete potassium, so no idea why I'm high, but hoping this was the cause of the bradycardia I was experiencing for a while.   My chloride was wonky too but normalized on it's own.

Is your bicarbonate abnormal because of the sepsis? 

Hi, welcome to the forum! I'm off to bed atm but will try to write more later, just wondering real quick if you've been checked for cushing's?

Oh OK, gotcha!   Your sister sounds just as wonderful as you are, and I'm sure would understand if you guys had a detour in your plans.  Serious things seem to happen at the most inconvenient times, don't they? Like before a big event, or on a weekend, lol.  When my local pots dr. goes on vacation, I tell him I hope he has a great time but because he's gone something terrible will strike. It never fails haha

I recovered fully from the sepsis and rather quickly fortunately. Probably because it was identified and treated quickly, the kidney infection caused a stabbing jolt through my back every time I took a breath. I didn't put up with that for more than a couple of hours. AND, my dr. was on vaca during that issue also, lol!

I was wondering how you were making out with the pacemaker. Pacing at 89% is just great. It must have been a total game changer for you! Hopefully the nurse coming in tomorrow can shed some light on what your next step should be, putting the pacemaker in jeopardy has to be terrifying! So glad you have a great support system in your family, that's so important.

Hi, there. I wanted to check in to see how you were doing, TMP. I hope that your getting along better. 

You aren't blabbering, don't worry    I didn't know you had twins! Gosh, that must be challenging some days with how yucky you feel. Sepsis is horrible. You don't think you have a kidney infection or uti right?. I was hospitalized about 6 months ago from sepsis due to a kidney infection. It was awful, so I can't imagine how you've felt going through this 5 times. Once was way more than enough!

Please be careful that you don't push yourself too hard this weekend, or try to hold out too long until your appointment. 

Hi, there, Ancy! I was thinking of you a few weeks ago and wondered how you were doing. I'm in the same boat with Dancer and don't have any medical suggestions atm, but I just wanted to let you know hearing this made me sad. I'm sorry your having these complications, I hope your pain is not terrible? Hang in there and sending you hugs.

Hi, again,

I remember thinking how strange the concept of a tilt table test was, it seemed like such an ancient or grueling concept to induce a fainting spell. It took 6 minutes until I passed out on my own also. I hate that test.  Some doctors are now using the " Active Stand Test", here is a paper from Vanderbilt about it; Diagnosing Postural Tachycardia Syndrome: Comparison of Tilt Test versus Standing Hemodynamics

Maybe you can have your PA complete the stand test and record your vitals, then send the info off to the specialists. A holter monitor might help too if you haven't had one yet. I don't remember reading in some of your other posts if you've had a tilt yet? Maybe your GP could order that also.   Unfortunately, all the specialists have a wait like what you describe because they are so far and few between.  You could check for a cancellation list at their offices or maybe have your PA call to see if they can get you in sooner?

Hi! This topic might be helpful:

10 hours ago, BillC said:

New here I have been diagnosed with degenerative autonomic nervous system disease. It started with a major spinal injury I had open thorasic surgery for the t7and t8 disk. I have also been diagnosed with degenerative disk disease, and require anouther surgery for a c4 disk. I was scheduled for surgery but it was cancelled because they do not believe that I could survive it with the dysautonomia I have been told by my Gp doctor that I could die any day or could live 6 months is there any one with some knolage that I could cat with any time tomorrow by chat cell land line email or by iChat I would pay to find a person to please catch me up on everything  I feel so lost and I can't find a doctor in Indiana I have Seen 11 doctors in the last few years I live in the Midwest Indiana so heat is not to bad please contact me or email me thanks bill

Hi, Bill. Welcome to DINET.  Has your doctor considered sending you to the Mayo Clinic? I'm not sure if you can travel, however, if you are able to I would seriously consider seeing their autonomic specialists there. They are 1 out of 3 centers in the US that see the most challenging and complex cases. I'm not sure how far away Columbus, OH is from you, but there is also a fantastic specialist there, Dr. Grubb.  I'm truly sorry that you are struggling with all this.  

Hi, Marie,  Happy you've found us!  Suffering undiagnosed for 10-15 years with POTS symptoms sounds so difficult and challenging. You'll find many people here on the forums that are able to relate to that. The good news is that many improve to some degree after a diagnosis. 

Hi, there! Welcome

The actual diagnosis for POTS is symptoms that persist for 6+ months, and a HR of 120bpm or an increase of 30 bpm upon standing, without the presence of hypotension. Like TCP said, blood pressure isn't as important as HR.   You basically met the criteria I think.   Was the doctor who diagnosed you an autonomic or POTS specialist?  We have a list on the main dinet.org website which includes specialists throughout the world, you can search for someone in your area if you would like to consider being retested. http://dinet.org/index.php/physician-list

This is from Dr. Raj, our medical advisor and a top POTS specialist, from his newest paper in 2015:

"Postural tachycardia syndrome (POTS) is a form of chronic orthostatic intolerance in which upright posture is associated with an excessive increase in heart rate (HR) and incapacitating symptoms. An expert consensus statement [1] defines POTS as a HR increment ≥30 beats/min within 10 min of standing or head-up-tilt (HUT) which is sustained in the absence of orthostatic hypotension (a drop >20 mmHg in systolic blood pressure (BP) or >10 mmHg in diastolic BP). Children must meet a higher HR threshold ≥40 beats/min for a diagnosis due to their greater physiologic orthostatic tachycardia. Patients with POTS experience cardiac and non-cardiac presyncopal symptoms chronically (≥6 months). POTS is not considered to be a unique disease but rather the common phenotype of a number of heterogeneous, overlapping pathophysiological processes"

http://link.springer.com/article/10.1007/s11910-015-0583-8/fulltext.html

my.fiance takes this for a fib (atrial fibulation) its the only med that's worked for him after 2 ablations. He def. Cant miss a dose or he feels a flutter.

Hi, JuliaMaple, welcome to DINET!

I don't have any experience with Mestinon, sorry. I did want to let you know that I've had paradoxical effects from blood pressure meds. This was most evident in Lebetalol,  on the max dose and soared with pressures in the low 200's after taking it. This was in the very beginning and without a diagnosis, but I think the doctor I had at the time didn't believe I was being compliant with the medication or taking it properly, so I spent 4 hours at his office taking 2 doses and he saw it for himself.  Have you had your electrolytes checked, like sodium, potassium (florinef can lower this)? Also, there is a newer medication that was approved by the FDA, called Northera (Droxidopa), that is approved for orthostatic hypotension. Unlike Midodrine, which does not cross the blood brain barrier, Northera does and therefore is considered more potent and long lasting.

Midodrine is an adrenergic agonist so it basically works by stimulating receptors that adrenaline work from.. have you had your Norepinephrine/Adrenaline levels checked? Perhaps there could be a clue there.  Have you used an online drug interaction checker to make sure there aren't any interactions occurring? Sorry I could not be more helpful. This condition can be grueling and requires a lot of trial and error with medications, as a one size fits all doesn't seem to exist in this scenario. I hope you can find something that works best for you.

Hi! Just wondering if the doctors think it could be blood pooling causing some weakness? Sometimes when I'm standing in line, for instance at the pharmacy the other day, my knees buckled the exact same way yours and the others describe. I put my compression socks on and didn't experience any further weakness while grocery shopping that same day. It could've just been a coincidence though.

Thanks to all that have signed. POTS U.K. is getting close to their goal of 5,000 signatures but still need additional supporters. Please consider signing if you haven't already.

Hi, Katcanny,

I think a lot of us have gone down that path of "what if's" and sometimes when we feel so physically exhausted, it's hard to pull yourself out of that thought process. I've been there a million times, so try not to be too hard on yourself. We all just do the best that we can. Your son is lucky to have such a compassionate, considerate and loving mom. I'm sure you would do the same for your mom and son without even thinking twice, and we all need help sometimes.  When I first joined the forum someone gave me really great advice, cherish every good moment you have and cling onto them when things get hard. I feel like this reminds me there is hope. We've had hundreds and hundreds of members who came here feeling the same way and got better over time. We don't always hear about their progress because they've moved on to a new phase in their lives. I couldn't get out of bed for months, then I found the right doctors and treatment and I was able to regain some control of my life back. Hang in there and always know there is someone here to listen!

Hi, Tiffany!

Welcome to DINET. Sorry you have to wait so long for an appointment, months feel like years when your feeling poorly. Like Katie mentioned, it's uncommon to wait for POTS specialists. Luckily, from what I've experienced, it's the initial New Patient appointment that is sometimes a 1+ wait and the established visits are easier to book. I'm not sure if your interested in seeing if these  dysautonomia doctors can see you sooner, but they are in the boston area I believe. Dr. Roy Freeman,  Dr. Paul LeLorier and Dr. Peter Novack.

Here is the DINET physician list for you to search through also: http://dinet.org/index.php/physician-list

Oh, Wow!  It's so great to meet everyone     We'd love to hear from you!