Forgot your password?
in Dysautonomia Discussion
Posted June 23, 2013
what kind of "angina"?
In my opinion, dealing with pots has a lot to do with medications and discovering which are the best for you. For me, going through that process was really bad but in the end, i sort of got my life back and it was worth it. Sometimes things have to get bad before they get better is what someone once said to me....best advice i ever had. However, if you have pots denying it in my opinion, does not help. Sometimes, we come to a point where we have to make a decision of what kind of person we want to be, and for me, it was testing the waters and medication helped me significantly in the long run.
time for another holter
I am very glad that i gave you hope. But that outlook is not any easier for me. What is different is trying. And i try every single day. And that is what keeps me going and functional. The moment you quit is the moment you fail as far as i have learned with this disease. And IMHO you have two choices...can or can't. Pots feeds off cant's. I can't go out in public, i can't walk here, can't can't can't. But there are things that i have learned from pots innately which made me discover myself more intimately than anyone ever could. I CAN. AND I WILL. Those terms so easily spoken by many are cheap. And it would only take someone who has truly been through it to understand. Does i can, mean trapsing the mountain tops..no. It means steady forthcoming progression from a healthy individual...to completely disabled and back again...(mount Everest has nothing on us )And to be honest, IMHO from what i have read from this forum there are few better suited. We are strong--on the inside...and no matter what bad cards we are given..we will make the best hand of it. The thing i learned with my pots is that if i push steadily, progressively, and with ultimate discipline I will conquer. It will not be mountain tops. And i will have to work for it every single day like a man training for a marathon to walk only across the room. But if i push with realistic boundaries and keep hope on my side pots can never beat me. But then again, can life ever be the same for me as i have lived in this world for so long?
As people who are only partially conscious half of the time, is this the world we live in? And is it a wretched gift to bear?
I hate Pots so much. I hate it more than anything in the entire world. I live in a much different world than most. In fact, half of the time, i feel so jaded from reality i wonder if i am really "here" anymore. Yet, i am "here" because i feel fear and sense pain. But there are things that i do not feel anymore. Like comfort, peace, or humanity. My body functions--they are so weak and bleak..however, grabbing to the last breath and heart beat that they could ever have. Yet, i am still alive. Often times i feel neither here nor there. And every moment i fight to be "here" per se. I feel like i fight so hard, and then i am confronted with the fact that i can fight no longer and then i must submit. Every night, every episode. In fact i have learned that submitting to the great and powerful pots is the only way to ever escape it. I suffer, to the greatest (as i have ever known) human extent in trying to be here. Trying to stay here. And when the attacks come on, that is what i think "stay here, stay here, stay here, pinch, shiver, quiver, just stay here as there is a force trying to take me away and i refuse to acknowledge it." And i do not want to leave (and apparently my body surely does not!!) Sometimes i look in the mirror at myself-- at my face --and i feel like a shell giving every last effort to stay here and a mind that can never come back to the shell again. It does not matter how hard i try or will. It will not come back. And in that shell, like a hermit crab, lived a vivacious hopeful individual who had everything going for them. And now, that vivaciousness--that soul is gone. And the body, it knows. And it repents, rebels, and demands that we return. It will not give us a choice otherwise It will keep us alive no matter what the cost. And the mind, aye, it has been through such atrocious experiences that it either does not know what to think or accepts what is coming. And that feeling, of accepting what is happening to you...it makes you sick. Sick to your stomach...to feel like every moment is your last and to never have it be. That in my opinion is true suffering. But what if it was a gift? BWAHAHHAHHA Is my only reaction because anyone who would ever view this disease as a gift must have an incredibly cruel mind. However, what if we could step back from that for a minute. From the warning signs that our bodies are telling us and truly relish in the bliss of being neither here nor there. We get the chance to die every day. In fact, IMHO some of us do. But we are lucky, because each time we come back. What if we took that time and instead of being fearful, embraced it. And explored it. What possibilities could happen?
Posted June 21, 2013
It took about a month for my florinef to start working and when i began it things were really bad, but i changed up to it because things were getting bad in the first place. So not clear exactly what the cause was. It does make me more breathless, but i am more functional on it. But like others said, perhaps it is not the right one for you.
Posted June 20, 2013
I would stress that it gets confused for anxiety
Circadian rhythms denote sleep wake cycles and blood pressure trends. I nap not out of choice, but recognize that this effects my ability to function at a possibly higher level.
Posted June 18, 2013
Pheo, Hyperadrenergic, and/or pulmonary hypertension would be my guesses of things to ask your doc about. Have they considered doing a biopsy on this mass? Also, have you ever heard of clonidine? And, did they do a laying/standing i want to say its metanephrines but i could be mistaken (its the blood test they do for hyperpots) at mayo?
yes, i read once that it is caused by a short electrical disruption from no enough blood circulating through the area, but it resolves itself for me. A holter would be good for ruling out pvc's IMHO.
I got this FROM pots. Exposure therapy and SSRI helped me.
I know, its like a constant uphill battle.
This is how i view it and it helps me:
The doctors have done all they can for me, and every test that would indicate something serious has come up negative. Sometimes in life there is no cure for what you have and you just have to accept it. For me, that means recognizing that everyone dies at some point and if this is my time then so be it. Most likely, though, i will not die from this condition--and i have to tell myself that. Every night before i go to sleep it feels like i am going to die so this is a common experience for me. To be honest, sometimes i kind of look forward to it because living with pots can be pretty miserable at times. They do not know what causes it, but there is plenty of literature stating that people do not die from it acutely per se.
Additionally, i recognized that worrying about it is not only a product of my adrenal glands overreacting that is causing those thoughts, but that engaging in them in a panic like manner only makes the feelings worse. I think it helps to recognize too that pots isn't just heart rate. Its everything. And many people on this forum share your feelings. Darn adrenal glands
I wear them on really bad days. I would say the help by about 5-10% which can make a huge difference when you are operating at 70%. Dr. Lenoards online is a great place to get them cheap.
There are a lot of bad places to be feeling faint and i imagine in control of a vehicle at 30,000 feet is not the best. I don't even like driving down the freeway! Since you know the ins and outs though, perhaps you could get an administrative job with the FAA?
Posted May 20, 2013
happened to me all the time...ssri made it go away.
I hate to sound like a broken record, but 29 bpm? Are you in good physical shape? If i had a nickel for every time a dr. asked me that when i went into a brady phase...arguments in the E.R...my favorite thing to do! LOL
I envy you. Pots is a part of my dreams now.
IMHO the more you feed into pots the more it feeds into you. I noticed that you have been making a lot of posts lately and not sure whether or not this is a chicken or the egg issue. For me, the more i let it into my life, the more it pushes its way in. At the same time, when it pushes its way in the more i feed into it. However, the old adage better to be safe than sorry is there for a reason. The reality of it is...we can be afraid of anything and anything is possible, but then again is it likely? These are the ideas that keep me out of the E.R. when i don't need to be there...i.e. am not in any immediate harm. Also, to recognize that E.R. admission criteria is (as far as i am aware) composed of abnormal blood test levels, abnormal O2, abnormal BP, and arrythmia--then if i am not experiencing those things, it is a pat on the back and send me along my way.with a bag of fluid and a barbituate if the bag of fluid doesn't do the job. If you think you need to--go in. But make sure it is for the right reasons. I feel for you. Stay strong. No matter what you will overcome this in one way or another.
Posted May 15, 2013
Hi all, please fill the fludrocortisone section if and only if you took it for more than a month. Thank you!
Posted April 18, 2013
Anyone taken these? If so can you please tell me about your experience. Also, if these lower blood pressure how do they help with precyncope?
Posted April 16, 2013
I am also in the seattle area, these weather changes have been a little rough on me :/
I am sorry to hear about what you have been going through. If anyone can sympathize it is those on this forum. We know what that tachycardia can feel like and how challenging your past few years have been. As with others, i agree, a tilt table test needs to be done. Also, there is a "poor man's tilt table" where lying, sitting, and standing blood pressure and heart rate are recorded. Dramatic changes in HR or BP can be a sign of pots. This is done by electrophysiologists. Also, in regards to jangle's response about a pheochromocytoma, there is a also a blood test to detect it though i think i remember reading that the urine test is more sensitive. As far as kidneys are concerned, pheochromocytomas do not necessarily have to be in that location. They can be somewhere else in the body--something to consider when limiting things to kidney scans. "Because chromaffin cells also are situated in nerve tissue throughout your body, pheochromocytomas occasionally arise outside of the adrenal glands (paraganglioma). Common locations for paraganglioma include the heart, neck, bladder, back wall of the abdomen and along the spine.http://www.mayoclinic.com/health/pheochromocytoma/DS00569/DSECTION=causes" The test for these is urine catecholamines and plasma catecholamines. Another thing is that there is a type of pots called hyperadrenergic pots that can cause high blood pressure. Man i feel for you, when my pulse and bp are high it feels like i am knocking on deaths door, only for me it only lasts for minutes. I know you want to get off the beta blocker, but i think it is important to assess quality of life in that idea. I was against medicine for a long time, and for me, it makes my life much more liveable. You may want to look into SSRI's as they are less addictive than xanax and can help block the adrenergic (adrenaline) pathways.
When people talk about autonomic testing, there are specific tests they are referring to. Some can only be done at autonomic testing centers like vanderbilt and mayo clinic. However, those that can be done outside of the aformentioned clinics are done by a neurologist who probably will have never heard of pots. The types of test that are done for this sort of thing are sweat tests, QSART, and vagal reflex. As far as i am aware, autonomic testing really can only detect that you have pots if the tilt table test cannot. It is not going to change your symptoms, although it may change your therapy, and thus provide more relief in the long run. Another reason these tests can be important (QSART) is to rule out neuropathy that can be continually damaging to your nervous system. I believe there is a dr. up in NY who specializes in pots, its either julian stewart or phillip low i believe, not sure.
Pots is more than just heart rate, although it is definitely the hallmark symptom for some and the method of diagnosis. Here is a list of symptoms that we experience via a poll http://forums.dinet.org/index.php?/topic/22986-the-symptoms-we-get-from-pots/#entry214229.
If i were in your shoes, these are things that i would want done:
-Tilt Table Test
-Event Monitor (different than a holter or 24 hr. monitor in that it is worn for a month and can provide a different picture to cardiologists)
-Brain MRI (Specifically the brainstem, where heart rate, blood pressure, and arousal are controlled)--not to scare you but the varying levels in your blood tests of other issues may signal a higher disease process than just the adrenal glands.
- TSH, PTH, T3, and T4 blood tests--to check out your thyroid--follow up on the low cortisol
- Plasma and urine catecholamines also urine metanephrines to test for a pheochromocytoma
- Comparative Metabolic Panel--though i would sincerely hope that this has already been done to check for normality in sodium and potassium levels etc.
- CBC (complete blood count) to rule out polycythemia--though i would hope that this has already been done as well
-VIP (vasoactive intestinal peptide)
Your doctor will most likely not want to do these tests and many of them are out of the scope of cardiology. But the bottom line is, they do not know what is causing your symptoms and remind them of that when they refuse your requests. Have a reason why you want those tests done and make it a good one. All of the aforementioned tests are not unreasonable for the symptoms you are experiencing.
Slightly abnormal blood tests can be due to the collection process etc. but if they were abnormal, that is a good place to start. Are you urinating after these high bp, high hr events?
As for tears, i cant count the times i have cried over what i have, pots. We know how you feel.
Posted April 10, 2013
Naomi, yes. Also learned iodine helps with myellination. Hello iodized salt.