jenglynn

So it almost sounds like a natural Beta Blocker then- lowering HR and BP?

Issie, Lovely thanks for the warning though!!!! I'm so hypotensive I'm wondering what he was meaning it for. Does it help with breathing at all? I've had a lot of breathing problems and gasping for air lately. What's the usual dose? He didn't tell me that either Once a day? And when you "drop" in BP, what kind of a drop should one expect on average (I know we are all different).... Thanks!!!!!!! J

Interesting about the morphine... Had it via IV in the hospital once and did nothing. They tried Demerol I think it was? That worked. I was also prescribed Hydromorphine a couple months ago because I do occasionally need a narcotic for pain and my doctor thought switching them may prevent tolerance- usually she gives me hydrocodone. Don't take it a LOT- maybe 1x a week or if I'm really struggling to breathe I might take it because it helps calm my breathing too. But the Hydromorphine may has well been placebo. Nothing!!!! And she was telling me make sure you're in bed hen you take, etc,, but I honestly felt nothing!!!! I've talked to others who have said one pill knocked them out 12 hours. Odd! Jen

Oh my... With my post concussion disorder and cognitive problems I was struggling to follow along with this... And feeling quite silly- but I really hope I can ask a stupid question because I'm intrigued. I just received a voicemail from my neurologist on Friday telling me that he wanted me on magnesium RIGHT AWAY but didn't specify WHY?? Of course it was after 5pm on Friday so I couldn't reach him to ask- but how does it benefit one with autonomic neuropathy? I saw the migraines- which is great- do you think it would help with any headache or just migraines? I get frequent migraines (well maybe I should say infrequent compared to some- but 2x a week on average which is enough for me) but it is rare that I DO NOT have a headache related to my concussions. Thanks!!!! Jen

Oh my goodness... That's awful! I'm so glad you found out WHY! My thyroid is a mess- TSH is hyper and T3and T4 are hypo- and my autonomic neuropathy has been debilitating the last 5 months or so. I wonder if my thyroid is making it worse? No one wants to mess with it and every endo I've seen just tells me I have "sick thyroid" meaning my thyroid is fine but out of whack due to my autoimmune disease attacking my autonomic system. So after a week you have already noticed improvement! That's wonderful for. Frustrating you've been suffering all this time and it was a relatively simple fix but better late than never I guess (not to make light of it at all). I'm so happy you are doing better. I am really struggling as well and the muscle jerks scare me so much as well. Keep us posted on your continued improvements!!!! Jen

Thank each of you for taking the time to comfort me- and you did. I'm okay, I will be okay, and I'm not even sure I reacted as I did! I KNEW it was happening eventually- I guess reality just slapped my face. One door closes to another opening, right? You have NO idea what a lifeline you all are to me!!!! God Bless each of you and big (((((((((( HUGS))))))))))) right back! Jen

I KNEW it was coming. I have not worked since September. Have used up all my leave and have extended personal leave even beyond what is usually allowed. I am receiving Long Term Disability, have applied for SSDI and I know that it will be at least months, a year or more, or who knows when I can return to work. I am still bedridden at this point. My employer has been patient and very compassionate. Yet, when I got the call today- I was expecting it. I had a conference call with HR last week and we discussed it. I was honest with them about the time frame and I also know my dept. can't replace my position until I am no longer working there. Not fair to my co-workers. Still, I got the phone call and just started crying. I have no idea why. I wasn't even planning on going back to work in that dept. when I DO (if I do) go back to work. I am more than halfway done with my Masters and plan on a completely different area in the hospital when I return. Still, could not stop crying. First, I am 38 years old and I have never been "terminated" from a job before. Even more, I think all of a sudden it just hit me- I am "disabled"- not only disabled but pretty debilitated. This isn't news to me. I deal with it every day. But there was something about today that just made it even more "REAL." So, now I am officially unemployed. I have not been "unemployed" since I was 14 years old, except for twice when I took 6 months off with two of my babies. I have been unemployed since September really.. because I have not been working- but now its official. Sometimes there are days that I really get frustrated with this illness. Jen

Funny I should read this today.... I had not seen this yet!!! I am glad that your boss is understanding. This disease can be so difficult to deal with and IMPOSSIBLE to predict so working is not easy. I also know that the stress of the job would make a big difference too. Or if you felt your presence was imperative... meaning if you weren't there, it wouldn't get done, and not only give you twice the work to do when you get back but you would constantly worry while you were out. I really hope your boss continues to work with you and that you don't have to feel stressed about it. Is there any way you can do work from home if needed? I really hope that you can get an appointment and get on a good treatment plan!!!! It is really difficult living in limbo and it takes time to find a regimen that works (ha ha... I laugh because I still haven't gotten there... but that doesn't mean you won't...) Thinking of you!!! Jen

Thanks Issie! I sure am!! Very proud to say that I am still succeeding. I have often wondered if with my lifelong autonomic and autoimmune issues if the severe stress, adrenaline and cortisol running through my veins for the majority of my life has contributed to the severity of issues I have now? Probably no way to know for sure- but I am sure it didn't HELP at all! Jen

Jangle!!!! I am SO happy for you. I have to be honest- I don't if it is from my concussions or POTS brain- or both- but as I was skimming this whole post my poor brain was not comprehending most of it... EXCEPT: "Today I've been pretty much 95% improved throughout the majority of it." I cannot TELL you how happy that made me and just made my WHOLE DAY!!!!! I am so proud of you for not giving up, trying new things and also taking the time to be such a positive motivator in this forum- who always has a friendly, kind comment and lots of encouragement and compassion!!! You go enjoy this day 95% free of symptoms and LIVE life!!!!!!!! Jen

I also want to thank everyone for the kind words. I would never consider myself an inspiration, because this is all I have known. That said, I have gone through stages of relative health and unless you've experienced the difficulties- you never appreciate the beauty and wonder of the good times. I use the analogy of my first marriage a lot. We married young- he was a jerk. A compulsive gambler. Abusive. But, I grew up in a home with two alcoholic, drug addict, physically and verbally abusive parents who were so beyond the term "neglecting" I can't even describe it. I have a brother 3 years younger- when asked about his Mom- he says me. I took care of him. My dad was a long haul truck driver- gone weeks at a time- by the time I was 10 years old- he gave me the household money or nothing would be paid. 80% of nights, my mom spent the night elsewhere, my dad on the road. I paid bills, bought groceries, clothes as needed, got my brother and I to school. I moved out as soon as I was able, took my brother with me, and he lived with me through high school. He started college the year I graduated college- abd he graduated too- and I put him through myself. All I ever knew was to be a caretaker- so I was immediately drawn to my EX and I lived in a misery of a marriage for 10 years except the four miracles that I call my children that came from it. He spent every spare dime he could at casinos and didn't care if his kids had food, shelter or clothes. He verbally abused me and severely beat me on a regular basis. All the while, I was sick Ith this debilitating illness- but with the help of a lot of adrenaline I guess, I'm a survivor. Finally one day I looked at my oldest daughter, 9 years old, sitting on the couch reading a book while her father and I were in a heated, non physical fight- I realized- this was her "normal" just like mine was as a child. I filed for divorce the next day. He almost killed me in the process, but again, I'm a SURVIVOR. I tell that story because I re-married the most wonderful, loving and compassionate man. I truly believe I would not value him and love him as deeply had I not experienced what I did. Of course, it's much better not to have to get to it that way- but there are values to be found in our trials if we look. Every bad day makes us appreciate the good ones so much more. I look at life as a gift and even now, when I'm physically at my worst, I value every day I'm alive because that means I'm one more day closer to getting better, one more day with my family, and one more day to love and be loved. Jen

Jangles- EXCELLENT point! Even though I've had autonomic /Autoimune issues my whole life, I have always been fit. I'm not saying it was easy for me (also have probable EDS) but have always been in shape. My husband, on the other hand, is DE-conditioned and perfectly healthy. Poor Grinch, getting all the blame!

Of course I don't remember specifics, but I have had this test 3 times at Mayo- and was supposed to do it this week for a follow up appt. but some kidney dysfunction derailed it- so my neuro won't even see me until this has been done. All 3 times I have had it down the sodium level has been very abnormal- so that is why he needs it done for the follow up. Go back April 13th and hope all is well that time! Jen

Oh, and no laughing at me but Dr. Seuss is one of my FAVORITE authors, and if I am just about as passionate about anti-bullying as I am about POTS/Autonomic awareness- the Grinch has always been one of my favorite stories... "Perhaps his heart was just two sizes too small" I always felt like he was bullied who became a bully so I related strongly to Cindy Lou-Who- so I am not particularly offended by the "Grinch" nickname for personal reasons but I can certainly understand WHY others are. And certainly that doctors assertions. Jen "Be who you are and say what you feel because those who mind don't matter and those who matter don't mind." Dr. Suess

I was not thinking about using negative information and harassing doctors. My thinking would be the focus should be awareness and education. So many doctors have never even heard of it. Like Jangle said, it's not discussed in med school!!!! I think a good place to start locally would be with general or family doctors. When someone first starts feeling bad- they don't go immediately to a specialist- they go to the GP/Internist/Family Dr, etc. That is what I did. Over the last 6 weeks my GP has been on maternity leave- and it has been a nightmare. Even though I tried to plan ahead- she thought she could still handle my case from home- but none of the nurse's were sending her messages- anyway- none of the other family doctors have a CLUE what to do with me. And of course- the last 6 weeks I've had several issues. Another place would be the ER. I don't know. I'm not a PR person but I know that I'm living with a disease that has torn my life apart and debilitated me to a degree I never could have imagined and has damaged me cognitively in ways that may never come back. If I could help prevent the severity of my condition to develop in someone else- I would. I don't have any great ideas or grand plans- but just thought if we had some people willing to work together- we could make a difference. Jen

Oh, I should say- I had four pregnancies- and usually really good for most of them- better than normal- until the last trimester- and I developed preeclampsia with each one- each one getting progressively worse. I love my four babies and wouldn't change a thing but the four pregnancies took its toll at each end. But I lived in a small town and did not have very good health care (looking back- didn't really know at the time.) my guess us that because I'm normally so low BP at the end of the pregnancies my body couldn't deal with the extra blood??? Total speculation and I've never researched it. Jen

Hi Everyone! I experience this with medications- but general anesthesia is the opposite. I have been trying to figure this out. Either the normal dose won't work or wears off so quickly. I wondered if maybe its because my heart is always beating so fast- it just through my system faster? But most pain meds just don't work or if they do not for long at all. Jen

I've noticed my relapses have always been increasingly worse. Shortness of breath tends to intensify, blood pressure gets very low- even sitting up- will be 70 or 60 over 50 or 40- and syncope increases. Tachy gets higher, faster. My symptoms have never really "gone away" but I've had periods of relative functionality compared to now. I have never had a relapse of this intensity, however, where it keeps me home bound and has caused so many issues with my other organs. Jen

Okay- no clue what happened that response????

Issie, I am with you. Physically, I can't do anything. But I can send emails. I can see about getting brochures to all of our family doctors who are often the first stop. I can try to think about other things I can do. For over a YEAR, there was not a neuro in my local hospital who would see me. They recently hired a new one and HE contacted me out of the blue and set an appt for next week. He has autonomic experience. I did file a complaint that all of the neuros refused to see me- so I'm guessing that's why he called. He said he thoroughly reviewed my chart and the connective tissue disorders in our family history immediately stood out to him. Since we are able to genetically test both my daughter and myself- he has some extensive tests planned. He is also interested based on our results in testing my dad and brother. I'm not quite sure what he is thinking but I'm glad it's something he wants to look into. Even if it has nothing to do with my POTS (which I think it may but that's speculation) I think it needs to be looked into. I don't know if I'm overreacting to the CT scan- but when I saw the info about the pupils that really scared me. The finding I saw on the CT may be no big deal... I mean no one saw the need to bring it up, but maybe if you factor in my diagnosis (which was unknown at the time) and family history- (also relatively unknown at that time) it would have changed the radiologist interpretation. I really TRY not to make up things to worry about and I'm wondering if I am doing that now and overreacting- OR if this is something I should pursue. Thanks Issie for your response. Oh by the way- TOTALLY unknown to me- some close friends are doing a fundraiser for me. I'm actually a little embarrassed about it but so overwhelmed with the response so far. It's the end of April. But one of my friends arranged for me to have two interviews on 2 different local news channels discussing my condition. So as the time gets closer- I will definitely be asking for input from all of you and help about the best way to describe this in a short amount of time and to make SURE I'm not giving incorrect info. So- be prepared for me to be begging for help soon. Also flyers are being printed soon so any input on how to succinctly describe what my condition would be greatly appreciated. I may open a new thread about this to get more responses. Thanks Issie!!!! Jen

I think that we should maybe form a group of people who have the time and/or energy to focus on this and begin trying to make even the smallest changes. Even starting with our own local hospitals. If there are others who are interested then maybe we can start to make a change. It CAN'T hurt, right? This is emotional for me like all of you. I was "born" with some kind of autonomic problem- POTS or whatever- and I grew up feeling different. I grew up always being tired. I couldn't keep up with the other kids. I tried, I never really let it stop me, but I realize now looking back, I had mini- flares (compared to what I'm facing now) my whole life. I was always a fainter. Some of the ridiculous explanations I'd get were not even plausible. I remember fainting and hitting my head and needing stitches at 12. The doctor badgered me and humiliated me in front of 5 or 6 people assuming I was pregnant. I was horrified. He insisted on a pregnancy test and told my mom to get ready to be a grandma. Of course, it was negative, but I was the one with the illness that HE didn't understand- yet I was bullied, or talked down to, or was told I had "severe" mental health issues (and please, I am not degrading anyone with with true mental health issues- they are also real diseases) but that wasn't the problem. Mostly, I was told I was fine and seeking attention- I can't even count the amount of doctors who told me that. Finally, I just learned to live with it, my parents forgot about it because I never brought it up unless I had an injury that really needed to be stitched ( I became best friends with butterfly band aids). I was often sick, would contract rare diseases or viruses, incapable of getting a fever, but I learned to keep my mouth shut and the only time medical care was sought would be when I was so severely ill I would require hospitalization. Well, my body was fighting an aggressive autoimmune disease, POTS and a connective tissue disorder that led to numerous injuries. The emotional factor comes in with my 13 year old- who is sadly following in my footsteps- although minus the autoimmune disease at this point. She has had numerous syncope spells over the last two years and diagnosed at 12 months old with connective disorder. Extreme hyper mobility and skin issues. I DO NOT want her, or ANYONE to have to suffer as we have. Even at 37- after living 37 years in pain when I can not honestly recall a day that for 24 hours I felt healthy, energized and out of pain. I survived on adrenaline. Trying to get a diagnosis was an absolute nightmare. It is time for some awareness!!!!! Rama, your story about your relative dying of type 1 Diabetes is close to my heart. I was very close to my great grandma- and she always talked about her twin sister Sarah who died at 9 years old. It wasn't realized until years later, after other relatives were diagnosed years later, that the family put two and two together about Sarah and realized she was a diabetic. My grandma would tell me she would cry every night because she was so thirsty- it took her two weeks to die- and her doctor said there was nothing wrong with her- it was just what I was told- Sarah was seeking attention. We are always told that this isn't fatal, some doctors say it is inconvenient others say it is disabling. We have world renowned facilities telling kids that it really is a parenting issue and some behavior changes will help them. Three weeks they head home with hopes of moving on with their lives. I truly pray they do- maybe some will- but many won't. I've been there. I have relapsed more times than I can count- and I don't even know if I can say "relapse" because it has never really been gone. My dad told me recently... "I've always had a fear that something was really "wrong" but we could just never find out what. I guess I eventually began to believe the doctors... It was in your head... I'm so sorry.." How do we KNOW it's not fatal???? We all have different forms, yet are all lumped in a huge catch all net. I know I've mentioned several times I've had family die in their 50's of sudden aneurisms. Hypermobile, fainting family members with low blood pressure. Yesterday I received a full copy of my last 5 years of medical records on CD. I started looking through it... I had a head CT last year after a syncope spell which needed staples. It stated something being abnormal with my left posterior something something artery. I don't recall the terms- "Otherwise" a normal CT... Ummm... That's NOT a normal CT! When I looked it up online, I found that it can increase a chance of aneurism.. Important warning sign to look for- chronically dilated pupils, especially with one being bigger than the other if the bigger one is on that side. Guess what? Pupils are always dilated and left pupil is always larger than my right. With my family history, I should not find this info on my own!!! Maybe it's a 10% increase risk- maybe lower, maybe higher- but I should KNOW. They have to do a better job categorizing us. I know there is controversy regarding this, but I have a strong feeling that my connective disorder factors in to my condition somehow. My aggressive autoimmune disease is the main culprit, I'm sure, but MY case is not the same as everyone's. An exercise program isn't going to cure me. I have 30% kidney failure in my left kidney. My thyroid doesn't work. My bladder is decompressed now. I want answers and they are not coming. I am starting to get scared. I want this figured out so if my daughter advances, we know what to do. I know I rambled and I'm sorry (it's actually a result of my brain traumas so I have a tiny excuse- I can't remember the exact term but I tend to ramble and go on and it is part of my cognitive dysfunction to do with not having an accurate concept of time). I just want to say that instead of punishing kids with POTS we need to give them a big hug and tell them we are saying they have to feel this way and that doctors are FINALLY start taking us seriously. And we need to put more time, money and research into doing a better job of sub-setting different forms. I KNOW this is complicated and extremely difficult to diagnose let alone treat. I have sympathy for the medical profession. This is not simple and won't happen overnight. But instead of letting ONE doctor speak publicly for ALL of us, a doctor who speaks for a small minority at that- let's have the medical community as a whole stand up and say that this is complicated and we DON'T fully understand it- but we WANT to- and it isn't a one size fits all condition. Let's work together and get some funding, education and awareness- and start making progress. Thanks for listening/reading to my rant, I appreciate your indulgence. I am especially crabby because I was supposed to have my follow up today with the "major facility" mentioned often about the kids- and because my kidneys have not returned to normal after my IVIG rejection I have to wait another month- at least to be seen to find out about my next course of treatment. It's been 3 and a half months already. So I'm just frustrated. Jen

I think it is the behavior modification aspect that just gets to me the most. Are we suggesting that these kids are acting out and should just train their brains to ignore REAL symptoms so that they can convince themselves they are better. I wonder at what age this facility stops using this philosophy- 18? 21? I would have been so livid had I arrived there for help as severely sick as I was- only to be told that I needed to do A, B and C and have a major attitude adjustment that someone would oversee- and I would be much more able to cope. I never had any of the neurologists make ANY such suggestions to me. In fact, it was the exact opposite because I had been through so much just trying to get well- they actually showed compassion and said that this was not a mental problem- it is a physical problem- and no amount of "trying" is going to take it away. I guess the positive thing for ME when I was a teen suffering from POTS but didn't know what it was- because doctors didn't- is that I never had to endure anything like that. I had plenty of doctors tell me it was in my head but I don't recall any telling my parents to punish me for it. When I would get multiple syncope, dizziness, tachycardia I would dread going to a doctor- and it was always a new one because the previous one had basically called me a loon. I always got the speech- "Some people just faint" or "You have to stop standing up so fast.." None of these doctors could tell me WHY I had 3 cases of chicken pox either, or WHY my body NEVER runs a fever no matter how the severe the infection is. I once had strep throat, very sore throat, no fever of course because I don't get them, so I went on with life. A week later I felt better. 4 weeks later I was in intensive care with acute glomular nephritis (I am sure I spelled that wrong) but it is basically when untreated strep bacteria gets into your kidneys and you end up with kidney failure. It is very rare that an adult would get this because they would be able to kill this bacteria with their immune system and fever- luckily it was acute and after some dialysis and several weeks of rest my kidneys were nearly normal again. So as frustrating as it was to always be sick as a teen, and always feel as if I was different and could never keep up with everyone else- at least no one knew what it was. So instead of climbing rock walls and being punished- I was just a hypochondriac who needed to stand up more slowly. Jen

I absolutely LOVE taking a warm bath and it is the ONLY thing that relieves my pain. I have pain all the time it seems, except when I am in a bath. That said, according to every doctor I have seen, they are forbidden, but it is the one pleasure I allow myself. I figure I am stuck in bed all day, given up SOOOO much, I will find a way to make it work. I have to take a bath anyway- because I cannnot stand or even sit on a stool in the shower- so I have no choice. It also relieves my anxiety... but after a time, I feel the symptoms coming and I know it is time to get out. My protocol is that I let all the water out and freeze like crazy and put one of our huge towels over me after the water drains and wait about 15 min or so until I am no longer red (and I don't take HOT baths like I used to- but warm) and I just wait. I should say, I NEVER bathe without my hubby home because I need help in and ESPECIALLY out, then he helps me get out, finished dried off, dressed. Maybe it isn't worth the taxing it does on my body, but it is my ONE thing that I do that I am really not supposed to and eventually even my hubby agreed that as long as we made a safety plan, it was okay. I still occasionally have syncope, even after all the precaution, but NOTHING like I used to. Before I really was diagnosed or had figured out what was happening, at least 60% of my syncopal spells were after showers or baths. So we have it down pretty good now. The most important thing is that I don't get out until I am totally cooled off. I shiver but am covered with a towel so its not so bad. I always have my cell phone up there and then text him that I am ready to get out- and then he comes and helps- and usually carries me back to bed... I don't really even trust myself to crawl. When I am having a bad day, or BP is really low, I won't take a bath.. so I am careful and I always take my BP before I take one. But it helps so much with my pain management and anxiety that I think it is more of a plus than a minus right now. Please, no one yell at me. I know, I know, I am not following the real rules... but sometimes we just have to adjust and live the best way we can. Jen

No... I have not been tested for any of those things. It has never even come up. It is interesting that you bring this up, however. My dad just mentioned to me the other day that when I was 3 and 5 I tested positive for some kind of parasite and was very sick for quite some time- although I have no memory of the episode at 3 I only have a very vague one at the age of 5. All of a sudden, my parents have been trying to remember things that happened to me as a kid. One thing they informed me of is that at 8 weeks old I had a serious case of influenza which had me hospitalized for a couple weeks I guess, and it was a very rare strain of some flu. I had a very high fever- 105-107 and it took days to break. Strangely, as far as anyone can recall, that is the last time I ever had a fever. I never remember having a fever in all my 38 years, and I have checked as many medical records as I can and have never found anything that shows a fever. Even when admitted for acute appendicitis about to rupture- right before surgery temp was 97.1. I should say that my temp tends to run lower- around 97- so I would guess a 98-99 would be a "fever" but that would even be rare. Maybe I should mention the parasite thing (UGH... just the thought gives me the heebie jeebies) but since I have had them before.... it is worth mentioning and at this point anything is worth trying!!! Thank you for bringing that up!! Jen

Christy, I never thought about the positive aspect about him getting to spend time with kids who can relate. As an adult, I would LOVE to have that chance. This forum is so helpful for that reason. I am glad he wasn't negatively affected, but the opposite, and of course you recognized the ridiculousness of using discipline in response to a disease as if he is doing something WRONG. Ugh. Just thinking of myself, and what I have been through physically, emotionally, mentally my whole life as I've struggled with this, but especially in this last year: all the testing, labs, hospitalizations, pain, concussions, adrenal surging which triggers mood changes and emotional thoughts, uncertainty as I went through the diagnosis process.... I could go on and on but will spare you... but when I think about this last year at 37 years old- the thought of being disciplined and punished for not feeling well enough to go to school seems not only mean but a waste of time. Isn't he being punished ENOUGH? Look at how much he is missing out on? I am sure NO ONE wants his life back more than he does. I think this disease does a good enough job on its own of punishing us. It doesn't need any help. I am so glad to hear most of the parents were in agreement. Did they actually use words such as "punishment" or "discipline" and give suggestions on possible consequences? I am sorry to keep going on about this but it makes me sad and angry to think of children going through this... especially after going through it myself and having so many days (most days unfortunately) where I could no way get out of bed and climb rock walls as I could fly to the moon. To have someone come and reprimand me on top of everything else would most likely just make me, especially as a teen, feel resentful and horribly uncared for. I do understand that this MUST work for certain kids/adults or the program wouldn't exisit...which is why I say AGAIN... the focus has GOT to change on categorizing us better and realizing that we are NOT a one size fits all unit. There are SO many subsets and this not only leads to incorrect treatments, diagnosis, uneducated or misinformed doctors, the list is endless. I could go on and on and usually do but will stop at saying that I am glad you have better treatments on the horizon, Christy and I am happy that your son did at least benefit socially from the program. Again, I pray for the boy and in family in the video and while I am with most of you that he is not "cured" I certainly hope that his improvement lasts and the family manages and navigates through the rest of the journey successfully. They both seemed so happy. Jen