Gemma

Thank you very much for reply. Do you think its better to get a lawyer from the beginning so that all paperwork is filled out accurately? Also, if my husband is working, am i still eligible even though he has income?

Hi everyone. Does anyone know if we are allowed to get some kind of help, like disability benefits with our condition? And if we are how do I apply for it. I have been sick for a year now. Not able to work and had to take medical leave from school. I finished 1st year of Physical Therapy school and have 2 more years to go. This is my second degree and I am really upset that I had to stop school because of this illness. Now, I am not in school and out of job. My husband is working, so I am not sure if I am allowed for any type of disability for the time that I am out of school and not working. They start sending me bills for school soon, because I am off the program I have to start paying them and my loan already is 30000. I am so stressed about it. I cant go back to school yet and if i am not full time student I need to start paying loans, but how can I if I am unable to work. This is so frustrating. If anyone know about disability and what to do with school loan, please give an advise because I dont know what to do. My husband cant keep up with all the bills plus all my medical bills which are a lot. I see doctors every week and sometimes 2-3 times a week and each visit is $35 copayment. Now they want me to start paying off lans. This is crazy. Please help. Thanks to all of you.

Thank you all for replies. And thank you angelina for mentioning rhodiola rosea. I had no clue its effecting heart. I guess i will stop taking it and see if the pain, subsides. I am taking it for past 3-4 week and actually thats when pains increased. I also added magnesium to my diet at the same time, but i heard that should help the pains. So can rhodiola actually do some damage? Thank you.

Hi thanks for reply. I actually did read on benzobuddies that third month could be the worst. I also think that due to dysautonomia and our sensitivity to everything might be making the symptoms of withdrawal 10 times worse. Logically I understand that my heart is probably fine. I am 31 with no family history of heart disease and all cardiac tests normal. But still when i feel pain, its really hard to control myself.

Ok, so I spoke to my electrophysiologist and he said he really doesn't believe its microvascular or pritzmentals angina based on the symptoms I described to him. But he can try me on calcium chanel blocker, I think Verapamil. He gave me 2.5 mg and said to start with half of that. He is concerned that my BP will drop and wouldnt want me to take it but I guess because I am insisting he is willing to try it. Today, I saw my regular cardiologist who just recently took my case from my old cardiologist because he is more familiar with dysautonomia and has some patients with that. He really doesn't like the idea of me taking calcium chanel blockers and thinks that they will make me feel like passing out. He also says that he has patients with microvascular angina and they present differently then my symptoms. Also, he said it would have shown at least somewhere on some tests as abnormality. The stress echo he said would have shown at least some decrease in blood supply to the heart. Also, this variant type of angina often showed either elevation or depression of something on EKG and mine probably 20 or so EKGs didn't show any of that. He is repeating my echo just to make sure there is no inflammation of the sac around heart. Also, he said they do not do cardiac stress mri, but if I find a place who does it, he has no problem referring me there to do it. I guess I will get the prescription and wait and see maybe pain subsides a little bit. I just hope I am not playing with the fire with this meds, but on the other hand so scared of the pains and feel like if I do take the meds maybe it will protect my heart in case I do have microvascular angina. So this is my update on this topic.

Neurologist that I saw said I dont have MS due to 2 brain and neck mri that was done. Also, said definetly no ALS. But i know these conditions are very hard to diagnose. I guess we have to hope for the best and hopefully we will be lucky like some of those people that were able to get better and recover.

I know what you mean. When i go online and search my symptoms it scares me a lot. My symptoms fit into really scary diseases, like MS, ALS, etc. Maybe its best not to know.

Hi. I am supposed to start clomid test tommorow, but very scared. Does this pill makes us feel worse? Please reply. Thanks.

Thanks. I already made app at end of this month. But wanted to know if anyone got pregnant during illness onset.

Thanks all for reply. I feel like there is definetly something wrong going on in my body, but don't know who to see for it. Chaos, was the immunologist able to test you for something? I wish the infection specialist would test me for some yeast or bacteria infections, or viruses. Something is wrong and i want to be tested.

Hello. I have another question. Was anyone able to get pregnant during the time of this illness? We really want a baby. I had a miscarriage almost 2 years ago. I don't know if that caused my onset of symptoms or not because I started feeling bad symptoms more then 6 months later. But had first episode of feeling like will pass out right after procedure for miscarriage, then another episode 3 month later and then around 6-8 month later started feeling really bad, but of course like many others was told that its just anxiety and was prescribed xanax for it. Now i have some ok days and some really bad days when i feel like i will pass out and very weak. But during good days I could feel really almost ok. At good days I can go shopping, clean the house and cook all in one day. But sometimes my symptoms flare up and I feel bad for weeks, like now. I also noticed that i feel much worse before and during my period. I was wondering was anyone able to get pregnant while being sick with this disease. Couple of doctors already told me that sometimes getting pregnant can make me feel better. Also, if anyone did get pregnant were you on any meds and how were you able to handle that, because most of the meds are category C. Please share your experience. Thank you very much.

Was your pots trigered by pregnancy? I had miscariage almost 2 years ago and wonder if that trigered pots. But i havent felt symptoms until 6 months later after miscariage. Althought I had two episods of feeling like will pass out after miscariage within those 6 month. I so want to have a baby, but how can I even try in this condition. I wonder if some women were able to get pregnant while having onset of pots. Maybe i should ask this question.

Sorry to hear about cancer. Was your pots trigered by cancer? Is cancer treated?

Ohh, I am so sorry to hear that. I just cant believe you were searching for it for so long and doctors couldn't identify what was wrong with you.

Thanks. I am glad other people have it as well, so I am not the only one. I had many cardio work up, but with our symptoms it always feels like more need to be done

Hi everyone. Does anyone know what does low heart rate mean. Since I stoped xanax 8 weeks ago, i noticed my resting heart rate goes down to 50s, like around 55-58 when I am laying or sitting. Is this normal. Before it used to be around 70s sitting. It does go up when standing. Usually in the morning standing is around 100 and up, later in the day its between 85-95. I also noticed that when its really low, i have lightheadness spells. I did just wear 10 day event holter monitor and did record these events on it, but my cardiologist said all looks normal. Does anyone experience this? And does anyone know why? I know that HR of 50s is not scary and actually very good for someone who is very fit. But i am definetly not a sort person. I do have low weight 110lbp, ldl cholesterol under 100, hdl is also good, lipids are normal. But still I think its too low for me. I checked my husband and his is also the same. It gets even to high 40s when he is resting and standing is 80s. But he is more fit then me. Although he is not doing it anymore he used to run a lot and used to go to gym. Unlike me, I was never a sport person, but was always very skiny and healthy before this illness. If anyone can relate to this or knows anything about it please write. Thank you very much.

And what is bisphoromal? Cant find it online. Thanks.

Hi emma. Thanks for reply. Did doctors say its dangerous? And how long did you have pain before you got diagnosed. The mri that they did was able to confirm the diagnosis? And was it stress test mri, or just regular cardiac mri. Also what is HRT? Thank you.

Hi everyone. I was wondering if anyone here ever found out their underlying cause of dysautonomia. I wonder if its worse looking for it. I have been to so many doctors and done so many tests and nothing so far. The only thing that my primary keeps on telling me is that he thinks i have adrenal insufficiency. However, the endocrinologist that ran the tests said they are normal. I looked at my results and my aldosterone is really low, like 6-7 on scale of 0-30. So this is one thing he is concerned. I was thinking of maybe going to also see rheumatologist to get checked for lupus and stuff. But i don't know if its needed. I went to infection specialist recently and he said why did i come to him and that he cant do anything to me. I said that when i got sick i was told i have mono and maybe more tests need to be done, but he didn't know what to do. Later my immunologist ran ebv tests for me and it showed that virus is not active anymore. But i had to ask him to ran that test for me. This is so tiring asking doctors for tests.

Hi Rosey. I do feel some discomfort when press on chest area, but not that much. What do you do for the pain? I just hope its nothing serious.

Hi. I was researching microvascular amgina because also experience severe chest pains. Did you have tests done for it and which ones and did you start some meds for it?

Hi, looneymom, its nice to hear from you. I actually just saw cardiologist like couple of weeks ago. He thinks I am totally fine and also says that my dysautonomia might be causing this. But I am still scared. I have them everyday now and cant keep on going to ER every time I have it because its everyday. I wish it goes away soon.

Hi. The pains are different. Usually I feel squizing pain on the right side of the sternum. Also, sometimes when I take deep breath I feel stabing pain on the left of sternum. But mostly what I feel is squizing pain on the right. Also, feel uncomfort all across my chest and scared that something will happen. But the worst and most scariest feeling is the stabing sharp pain that comes out of nowhere and even though it only lasts couple of seconds it leave me very sore in the chest area. These pains feel like electric shock pains and are very severe and take my breath away. When they happen, I cant take a breath and sometimes end up with the panic attack. My pulse starts rushing up and I feel like I have a heart attack. I just had an episod like this last week and ended up In ER. All cardiac enzymes and ekg was normal. Also, when ambulance came over they did onspot 12 led ekg and it was normal. I honestly dont know how to deal with them anymore. They were never as severe and got really worse last couple of weeks. I tappered off xanax 8 weeks ago, so thought maybe its still a withdrawal symptoms, but they were not as bad in the bigging of my withdrawals as they are now. I wrote on benzobuddies site and people said that 3th month of withdrawals is the worst, but nobody talks about having such severe chest pains. I know anxiety plays a big part in it, but I really wanted to get off xanax because it was making me worse and was prescribed for the wrong reason for me in the biggining. I felt horrible during the withdrawals, had all possible symptoms. Now, I experience these chest pains. My blood pressure is around 96-100 systolic and 55-65 diastolic. HR sitting is from 55-75, and standing usually elevated around 95-120 in the mornings, but later the day around 80-95 standing. Since I got off xanax, my resting heart rate lowered. Sometimes when I just watch TV it could go down to like 55, usually I feel lightheaded with that. I dont know if its bad or not. Cardiologist didnt say anything about it. Also, I started feeling upper back pain. Sometimes in the middle, other times where shoulder blades are. These symptoms scare me a lot. Lightheadness, chest pains, back pains, are all symptoms of heart atack, which is very scary. Even though I know I could have these pains due to my dysautonomia. Doctors think I have OI, but not POTS. I wish I could just make peace with these pains and live with it.

Hello everyone. I wanted to ask how people were able to deal with their chest pains. My pains are different all the time. Sometimes pressure, sometime shooting stabbing pain, sometimes electric shock shock pain. Lately its been an everyday thing for me. I am really scared. My cardio docs think I don't have any cardiac issues, but I am still really concerned. I had already done echo, stress test, echo stress test, 24 & 48 hrs monitors, 7 & 10 days even monitors, cardiac and pulmonary ctscans with calcium score test, numerous ekgs and cardiac blood enzymes done at ER visits for chest pains. Never found anything. I saw like 4 different cardiologists and all say I don't have cardiac problem and that pains are something else. I am still really scared and feel like they are missing on something. I recently read about unstable angina, Pritzmentals and microvascular and read that tests that I did dont test for it. I take no meds for chest pains and never tried calcium Chanel blocker or anything else. I get scared I might have that and it can lead to heart attack. Past 2 weeks pains happen everyday thruout the day. I have been to ER 4 times in last couple of weeks. All cardiac work up at er is negative. Does anyone know if I would have problem, would it show anywhere at least some abnormality. And what are the chances to have unstable angina if all tests are negative. This is so scary. Any advice would be great. Thanks.

Thanks