Jump to content

jenglynn

Members
  • Content Count

    408
  • Joined

  • Last visited

Posts posted by jenglynn

  1. Interview went great- it was much more focused on our blended family dynamic ( how often is your hubby's ex-wife your best friend) but we make it work- initially for the kids and it was important that none of them- there are EIGHT!-feel less important than anyone else, I'm fortunate enough to be blessed with a wonderful woman who just happened to be married the first time. I always say they were two kind, living, loyal people just. It right for each other- probably knew it all along- but both too kind to say a word before "I Do".

    Anyway, I did get to bring up some general symptoms, explain what the term means and advise that many doctors will NOT be familiar with P.O.T.S and you must educate yourself with any part of your body, but especially your autonomic nervous system, She is also very interested in giving me a full morning news segment to talk about this and I thought "Well, this is a good start" for education!

    I also had my benefit on Saturday night and was so overwhelmed.... I have only lived here 4 years and was always busy and never seemed able to form close ties- anyway, I was so amazed at how our community cane together, with so many came to support us. They raised more than $17,000 that night. I am still overwhelmed.

    Jen

  2. About 4 weeks ago I saw a new local doctor who was supposed to have dysautomia experience Abd specifically with autoimmune autonomic dysfunction neuropathy, FINALLY. Little things started to bother me. I called after I fell and had a horrible frontal lobe concussion that led to 78+ hours if n sleep Abd awful hallucinations. Didn't want to see me- fine- help me sleep! I've had double vision severely in the last 2-3 weeks- I have had it before- but it's so bad I pick up my phone and see 2 phones or whatever I'm holding. Can't really read from a book for long. He said go to an eye dr- nit neurological... Okay??? Then he said ONLY thing left to try is Prednisone, I was nervous about because if ny Autoimune problems, he said don worry about. Well, I was just starting another new med so I thought I'd wait a couple days so I'd know if I had a reaction. The day I was going to start, I had a yeast infection and treating it. I called his office and no one called me back. My family doctor saud not to start steroids with an infection. Day yeast inf, was gone I developed a UTI. So I was going to wait to be Infection free. I called his office about something else and when he asked how the steroid was working, I told him about the infections, and I hadn't started them he started screaming at me, not just talking loud, SCREAMING! I started telling him what I'd heard and before I could even explain he said: " I don't care WHAT your excuse us. I see no MD behind your knee so you follow my instructions to the letter !!!!" I was floored and really was trying to think if how to respond, and I stayed calm: "If you expect me to remain your patient, I won't be spoken to like that again, " and then I asked him about the infections- and he said it is perfectly fine to start Predisone with an infection and I'd been given incorrect info. I'm at a loss. I'm afraid to take it at all but he told me it is FOR people with autoimmune disorders. Ugh!!! So who is right? And what about the infection. I'm just getting over the yeast infection and a pretty bad UTI!!! I just want to get better- instead I'm worse by the day. What would you do?

    Jen

  3. Jan, I'd agree with your assessment exactly. I have a very aggressive Autoimune Defivpciebce and according to the doctors there basically no autonomic function- Technically, it's called Autoimmune Mediated Autonomuic Dtsfunction Neuropathy. A lot of other more "minor" DX (in their opinion !!!!!) we're made. Ipthey discovered a Connective Tissue Disorder but wouldn't test it because in their minds it is impossible for any connective tissue issues be related to Autonomic Neuropathy and mine is autoimmune- that's that. Finally, I insisted, and I do have EDS Abd said I have Fibromyalgia. Not sure how they even tested for that but I have extreme joint pain- have severe arthritis in both knees- knees, hip Right, and shoulders all dislocate all the time. I've torn many ligaments and at 14 severed all four ligaments in my left knee- which shocked the Ortho. . Saying he'd never sen all corn just totally severed like that like someone cut them with scissors.

    I was inpatient over 2 weeks at Mayo and left with the words "medical enigma" on my discharge papers, they did every test, had diagnosed me completely but didn't know how to treat me, and that was unusual for them. They tried me on a course of IVIG before I went home- well went to inpatient rehab to get used to the wheelchair, etc,- I was there 2 weeks- my 4th treatment of IVIG put me in anaphylactic shock. Found out thru blood work. Was in rejection- whole body and ogans affected. I was never ever able to contact my another doctor in our local area who will see me because of liability.

    Right now, I'm looking for another "specialist.'. I may look at the ones in Milwaukee. I'm just tired of jumping around!!!

    Jen

  4. Hi everyone,

    Our whole family is being interviewed for an interview (like a 30 min segment) and most of it is about a family. Our two blended families (me and my hubby's family) and the other side (his X-wife and new hubby) have decided to raise ALL kids on one family. We really love them equally and we are together so much it didn't make sense any other way. So my hubby and ex-wife have 2 together, I have 4 w/ my ex husband and Ex-Wife and new hubby have two year old twins. 8 all together. This is always quite gossipy to people and fascinates people but we started it as a way for the kids to all benefit but we've all grown so close. Even, guess will call her the X but sounds wrong) and my hubby feel like brother & sister- kinda how their marriage ended and began. X's hubby really reminds me of my bio brother who is 2000 miles away from so we bonded quickly- and X and I bonded and we just say we are sisters because we are really, MORE than friends- we are raising 8 kids together. Well a little bird told a little bird who told a little bird with a HUGE mouth!!!!!

    We got most everything done Thurs. but I was having an off day- no balance and could not enunciate clearly so they are coming back to interview Me with Rob (Ooops gave that away ) and me with Becky (Ooops-that too. Most of it will family oriented but there will be 10 min to talk about my illness/s. what should I say to get the most attention. I have a very aggressive autoimmune deficiency, autoimmune mediated autonomic dysfunction neuropathy, connective tissue- thought to be EDS, and P.O.T.S- and lots of secondary things because of these. Postconcussion disorder (now 12 I think concussions), thyroid/pituitary issues, kidneys not working right which I'm sure explains why bladder not working right, etc. how would you use that 10 min.

    This newscaster is super nice so I'm going to ask her to do a whole health segment (they do one every day on her morning show) so if that happens, I will let you know. But if we are getting ANY publicity, that's great and station manager feels other ntwks regionally pick it up because we are very unusual. Ex- wives, best friends- and her and her husband just put a benefit on for me on Sat!!!!!!!

    Thanks

    J

  5. Right now I'm at 15 mg and next week I think, I move up to 20 mg 3x a day. I started about 8 months ago 2.5 and just very gradually increased. I get the side effects like chills, goosebumps, always feeling cold. My scalp itches... They can always make me a but jittery and anxious as well.

    I didn't get side effects until 5mg and there are many others that I dont get that I didn't mention, I take mine 3-4x a day because the effects don't last long with me. 2-3 hours max (closer to 2).

    It hasn't been a "cure" for my symptoms by any standards... But I can sit up longer and it does keep my blood pressure higher, so more alert I think. I was also on Florinef and Mestinon which didn't work for me due to side effects that weren't as tolerable for me as Midodrine. I have heard of people having very positive results from posts on this board with those two- not advising just relaying info I've heard if Midodrine doesn't work out, good luck and feel free to ask any questions!!!!

    Jen

  6. Thank you all! My doctor is sure this is the way to go to calm my aggressive autoimmune disease down... But what if it doesn't? It had me in complete rejection of IVIG in 4 doses.... I've had many, many people tell me this is a wonder drug and lots of others tell me it was their worst nightmare.

    My illness is so rare or the combo (autonomic dysfunction neuropathy, autoimmune disease of unknown origin meaning they've never seen or heard of it before- but it destroyed my bidy's thermostat at some point so I never get fevers- and as quickly as my body was in rejection of the IVIG (which for immune therapy according to my neuro says us pretty safe and benign) for my to have an anaphylactic reaction (thankfully that nurse was there) and blood tests revealed that night whole body in rejection- all systems. Kidneys were functioning at 25% or something like that, liver, thyroid, bladder, bowels severely affected, m hemoglobin, hematocrit and RBC all changed about 69%... WBC higher, and my ferritin went from an 8 when they checked my iron - 2 weeks before was an 8- by this time I been transferred to the local hospital acute rehab unit- I'm not able to walk due to my multiple syncope- they said it was WONDERFUL- and was in the 80's or 90's I couldn't remember. They were celebrating telling me that it was working- my body was finally absorbing vitamins- and thus was fantastic news. I've yet to find out why- but apparently high ferritin is a false reading that indicates rejection (so maybe do them weekly to be sure???) I had been calling my neuro from Mayo all week and he finally called me back and I told him I felt awful but just as a "BTW" comment said at least it raised my iron. And he very quietly said... What do you mean? I told him about the ferritin test and he said for my husband to take me the our local ER and he was faxing an order and NOT to leave and wait for a call ob my cell. Sure enough- that's how we found out about the rejection. This was in Jan, by the way, almost to May. All of my organs are pretty good now except my kidneys. They haven't gotten worse ( good) but have not gotten better either (bad). So wait and see. Oh, and my wonderful iron???? Lol. First week off IVIG went from 85 or something to 58. Week later @39. You get the point. Now we are getting closer - @ 11. Oh 3rd illness genetic connective tissue disorder- they think EDS.

    So yes, I'm very nervous lot about taking this. I know that even if they try, they can't really know how I will react. The side effects sounds sound awful. I have a LOT of cognitive dysfunction from my many concussions- now up to 12- but shows how many really?

    I'm waiting and doing My research before I start. We have to. Some doctors are wonderful- some not so much- because they all are humans and I'm the last one to be such a hypocrite to expect them to know and understsnd a mutant like me :) just be honest.

    So, I will keep you posted either way. Life's just so complicated. That's about 10% of my story and tried to keep it concise. Not possible I've decided. Wish me luck!!!!

    Jen

  7. I've taken Midodrine since Oct. I take 15mg 3-4x a day (depending if I'm an early riser). I started at 2.5 and getting ready to be switched to 20 mg at the beginning of May. I get a LOT of side effects- in fact just about all of them. Feel freezing, colds tingly- tingly all over- especially my scalp.im very used to these Abd don't bother like they used to. I've always of of "THOSE" dreaded people to work who are wrapped up (not currently working). I didn't really notice the cold until about 5mg-and them much stronger at 10m and no real change going up to 15mg. As far as my BP it increases- higher the dosage then the higher the BP- one drug I take where I can pretty well predict its outcome.

    Alex, I'm glad you seem to be having a positive reaction. I hope it continues beside the icky side effects, I don't love them either, but taking Midodrine "helps" me get through the day. I'm always so hesitant to make such a statement on a message board- because so often WWIII breaks out... But I must dispute the statement in MY situation (and we all different- so maybe I'm the only one) which says that you cannot faint on Midodrine. You can feel faint but not fully faint. I have autoimmune mediated autonomic neuropathy.. and at my worst before I was "sick enough i guess" - too many concussions at 9- no more walking. So when I have to be out and about- mainly appointmentsout- I'm in a wheelchair but I even have trouble and will faint while sitting.... SO outside we use the wheelchair- inside- we crawl- ( what is this WE??? I CRAWL) everyone except for me and my poor knees think its quite funny- but at one point- still walking and on 10 mg of Midodrine I think I had 10-15 episodes of syncope in one day (I'm going back a bit because I was still walking buy not much) Couple days later I cut my head first time this flare and it was pretty bad. But still not given bed rest. 5 days later- this was the worst of this flare- I got up (I know, I know- naughty, naughty, but I just wanted to make the bed quick and get back in it quick and get right back in- well that didn't happen- I woke up about 20 min later I believe with my head in the lap of the most terrified, bravest, and :( bloodiest :( little 11 year old Joshie (my son)I have ever seen. I don't know how long he'd been with me but my guess is about 10 min. Judging from all the blood and my older son, Austin said that Josh told him that if the slowly lowered me down- my blood pressure would lower... Im guessing i tried to get up.......little by little which they did, because he knew being low my blood clotted. Horrible concussion and 5 days in the hospital over Thanksgiving :( I still say my son has made some of the better decisions than some of my doctors have. And, yes, I had taken Midodrine for all 3 spells. Why take it, then, you ask? It must not work. It does.... I'd faint 3x that amount if I didn't take it.

    It could be the type of POTS are so different? I really pray your response is more impressive than mine- but I still will take a 50% improvement anyday! I'm sure that the etiologies of all of our situations are a huge factor- and I've spent weeks and weeks at major med centers- no one has me figured out. My discharge papers from one say "Medical Enigma" lol.

    Jen

  8. Well, up until April 28th I would say "NO!" but my sister, brother and other family and MANY friends started planning this and I just found out a few weeks ago. Our area does a lot of this sort of thing, so it's not unusual but I just feel awkward, embarrassed and a little uncomfortable. I am VERY humbled, grateful and overwhelmed at the interest and people who are willing to help. People from so many "segments" of my life: family, church, work, prior work, hospital, hockey parents (boys play hockey), all the schools (we have kids in elem, middle school and high school) I teach a Marriage Enrichment class and many past students have come together... And others I'm sure I'm forgetting.

    My situation is definitely inconvenient and being bed-bound with all of the head trauma is a pain, and I'm glad that I'm getting SOME publicity in our little town to P.O.T.S, Autoimmune Mediated Autonomic Dysfunction Neuropathy and the many things that come along with it- I'm just thinking I don't every remember seeing a benefit for someone who isn't terminally ill or has a well known debilitating disease.

    I'm just nervous as can be!!!!! If anyone has good information that would be helpful for me to pass out, let me know. I really want the primary benefit of the benefit is people learning! I'm also going to be on a TV segment the next week- so same goes for that! I have a little bit of time. No do I use my time the best????

    Anyway- if anyone has had one of these done- advice????? If you haven't- advice???? I'm just a nervous wreck about it. I hope I don't sound ungracious- I am SO not- quite the opposite. I can't believe SO many people care at all!!!!!!!

    Thanks!!

    Jen

  9. Oh this is perfect timing for a question like this!!!! I'm on Long Term Disability and had to apply for SSI. I knew it would happen sooner or later, but after not working since Sept. my employer fired me due to inability to work. Like I said: expected. I guess I didn't REALLY think it through- how much would change. I'm now on Badgercare (Medicaid for Wisconsin) and not only did I have to cancel all my Mayo appts, and testing... I have to find new doctors for many specialists that I see. It took MONTHS to get all the pre-auths done for Mayo now I start over????

    On the the point- four of my drugs are not covered my Badgercare- Adderall. I take this with Paxil and I know it's controversial but it has made the difference in a huge way in my cognitive functioning. Not covered because I don't have an ADD or ADHD diagnosis. I take a pretty low dose but we've tried other things but nothing else helps. My RX ran out last week but I had several really bad days o ER the past couple weeks so I didn't take it so I took my last dose today. Drugs can be used for other purposes! I swear, it's one thing after the next. They also don't cover my pain medication- cant remember the name- I had just started it- but it was working really well at managing my neuropathy, knee, EDS, and head (10 concussions) pain all together which doesn't happen. The other 2 are minor and I'm not so worried- but it seems like as soon as I finish one battle the next one shows up. I know- not positive and probably inaccurate- and I'm tired and crabby but I just what a level playing field.

    I do have some other "news" that doesn't at all go with this- I will put in a different thread.

    Jen

  10. Hi All,

    Just saw a new neurologist and he wants me to start a 2.week dose starting in 2 days. I've read lots of reviews- most say that it "works" but the side effects are so awful they aren't worth the benefit of it. I've taken a lot of bad drugs over the last year so at this point I'm willing to try something that even gives me a chance to get better.

    So if anyone has tried it or had loved ones try it, if you could share experiences I'd be so grateful! I don't care- good, bad or ugly! I've read the online reviews which are terribly negative in general and I get that and I know what steroids do to a body. I also know what my body has been through over the last year and I'm willing to put up with a LOT for a chance at improvement.

    Thanks so much in advance who takes the time to reply!!!

    Jen

  11. Oh communication. It always comes back to that, doesn't it? In ANY relationship? Rob (my hubby) and I have only been married 5 years- blended family- I have 4 kids (with us full time) and he has 2 (50/50). I've tried to express gratitude to him and he will say 'You are welcome but don't thank me for doing my job! Sickness and health, remember???" 90% of the time he is like this. The other 10% is an utter nightmare. He has tantrums. He is mad at me for everything I do. Nothing I do is right. I sit up too long. I crawl wrong. I don't eat enough. You name it. He will tell me that I have no idea what it's like to be him. No, I don't, but vice versa applies too. Once he actually said he wished we could switch places for a week so he could get a "break." I don't think anything he could have said hurt like that. I go above and beyond to DOWNPLAY my illness with my family so they don't have to know what I really like. And he acts like I'm on vacation with a servant? I just cried and cried... And when I could finally talk I said "I am so glad we can't do that because I'd never want you to experience what I feel in a day - let alone a week!". And in another 10% moment he said that: "it must be nice to be ME and never have to think of anyone but myself and I get to "CHOOSE" how I will feel any certain day." are you kidding???? I haven't walked in months? I can't even PEE on my own! I've lost brain function. There is never a minute of any day I'm not in pain and have a headache. I know his job is hard. I SHOULD know- I did it myself along with a full time job and grad school , volunteering, church activities, Girl Scout leader, you name it. He isn't even working right now! When I was admitted to Mayo he was terminated and doctors

    orders still say I'm not safe alone.

    So like I said- mostly- he's fabulous! But when he's not- HE IS NOT. And I'm so guilty because he didn't sign up for this by a long shot. I even offered once- " I want you to be happy, if you want to go - please I won't hold it against you- go live a full and happy life." he was so mad because he thought I was threatening to leave. I wasn't- I would have been devastated had he said yes- but it breaks my heart that it seems like all of our life is about me and this "disease'

    Jen

  12. That's what I was wondering too, Issie. The doctor told me that I had such a bad case of appendicitis even though it didn't "rupture" it was inflamed for a long time-and all of those antibiotics kept it at bay. When I got out of surgery, I remember the doctor saying that I was still very sick with a serious infection and I had some of the "whatever is in the appendix" leak out because my appendix had an apendicolith which is a calcium deposit on the appendix- just as they were trying to get to my appendix the appendicolith started to split and the "stuff" started to leak. I had lots of adhesions from previous surgeries so once they saw that- they just cut me open instead if continuing the laparoscopy and got it out before too much came out. So mine didn't technically "rupture" but it started to perforate. All I know is I was really sick after. Issie, you must have been miserable. They said the estimated they got mine out with only 30% of the fluid getting out. But I think you could be so right that woke up my autoimmune disease in a big way. I have not been healthy or well since- its just progressed from there.

    Issie, did I read that right, that you had appendicitis and an appendix that ruptured and they just put you on antibiotics? 2 years later you had surgery? Were you hospitalized at the time of the appendicitis? I was so sick- there days I don't even remember- and mine was NOTHING like that. I always thought hospitals had to treat everyone who does through the ER, insurance or not. Or did just not go because you couldn't afford it? Sorry, I'm full of questions, but that just breaks my heart that something so horrible happened to you when it just didn't need to. Issie, I am so sorry and so sorry that you lost your ability to have children because of that. I just want to go back in time to that 23 year old Issie and take care of you, get you the surgery and prevent all of it. I want to give the present time Issie a big hug and again- say "I am so sorry!"

    Jen

  13. Sue- interesting!!!! In late Oct. 2010 I felt pain in my side and thought I might have appendicitis. I don't know about everyone, but my appendix pain was just- different- than any pain I had ever had. Not the worst- just different. When I got checked I had no fever(well since have learned that my "thermostat" is broken so I NEVER get fevers- EVER- but I had a bladder infection. It was decided that was the. Ause of pain- given strong antibiotics and sent home. 3 weeks later- same symptoms come back. This time they did a CT but the ER doc didn't anything but I had another ( or the same bladder infection) so they kept me overnight and gave me really strong IV antibiotics and sent home with what they said were the strongest antibiotics available in pill form to kill this bladder infection. 5-6 weeks later, right after Christmas-pain came again- this time REALLY bad. I go in and physical exam looks like appendicitis but guess what- another bladder infection. I am so prone to them- have a distended bladder- odds are every time I am tested I will have one. Doctor tells me it SEEMS like appendicitis- and advanced- I'm writhing in pain, white count thru the roof but no fever. Anyone with advanced appendicitis has a fever. They order a CT ( I didn't even know you could see th appendix on a CT) and this time he looks at it and he can see about 30% of it. He said its definitely appendicitis so SIX hours later I go have emergency surgery. Go thru same spiel with surgeon- your temp is 96.5- how can this be appendicitis. Just take the stupid thing out. They did- very carefully it seems- it was 80-90% to rupture! But I was on antibiotics 2 weeks after that. Then with the knee surgery- a week before and after as well.

    So I had a LOT of antibiotics in my system from Nov-March- which is not normal because it's rare I take any. Plus two rounds of anesthesia didn't help at all. I go thru complete autonomic shutdown that lasts 3-4 weeks after anesthesia. At least now I know what it is. BP is way off, HR high, can't pee- etc.

    And I was miserable all that time on antibiotics too, Sue!!!! Sure my autoimmune disease was just a raging mess.

    Ths is all so interesting!!!!!!

    Jen

  14. Thanks Ladies!!! I "guess" I'm willing to try the suit but I'd NEVER heard of it. It just seems a little... I don't know... Much??? Do you wear it all the time??? I guess after this long and being this sick - anything is worth a try. I looked up Predisone online and it seems as if people loved it or hated it- or it did work but the side effects were really hard to live with. I'm taking my first dose today. We shall see!!!!! I'm nervous about it. I saw one very rare side effect bring "extreme sense of euphoria, well being and happiness" I am praying for that one!!!

    I am a strong person and survivor. I've been through so many things... But I find myself getting to that point where I'm running out of positive energy and feeling more discouraged, defeated and pessimistic. THAT is NOT ME!!!! So I'm re- focusing energies starting today, counting blessings, and taking comfort in the fact that I'm seeing a new doctor who wants to help, so many people who surround me with love, and a family who supports me unconditionally. I AM one of the blessed ones!

    Jen

  15. I posted a few weeks back that I was "terminated" from work.... Well originally they told me they'd keep on our Health Plan for 6 months- that was very generous I thought- but because my employer ( the insurance Health plan is also the same as the hospital it can get tricky). We've had 3 different serious medical errors and they have been afraid of a lawsuit (which I've never threatened... I can't imagine suing them - especially as my employer)- long story short I didn't get the extra 6 months of coverage in writing and I just got our COCCs which give a term date of 3/31/12. So, verbally, they lied but no way to prove it. I don't even know why???? I wasn't even expecting t nor did I ask. They just offered. I called HR to make sure and they verified that the 6 mo was a mistake and the 3/31 dates are correct. Ugh.

    This has created a huge mess. Now I'm on some kind of assistance through the county. I was supposed to have my follow up with Mayo today. Now I can't see Mayo anymore- who is handling all of my neurological care. So I can send in pre-auths but it will take at least 1-4 months. I need about 8 tests before I can go to Mayo. The plan was to go today- get all of those done- and see neurology today and they would have 5 options for treatment. My new Medicaid basically insurance will not pay for any tests out of state. 3 can be done locally, 2 in Madison, and 3 in Milwaukee. I could just cry. The first time was hard enough- now I'm even more sick, more frustrated , and just ready to give up.

    I had to see a local neuro who has some "knowledge" I guess but the two treatment options for now he offered was having me wear a Flight Suit- like astronauts wear????? Has anyone heard if this? I guess you put it on and just keep pumping pressure in it. Of course my husband thought this was so cool... But I'm thinking.... OMG... I hate being sick- but I don't know about wearing an astronaut suit for the rest of my life?!?!?!?!? Has anyone else tried this? I totally thought he was kidding! I'm sure the Medicaid wouldn't pay for it anyway...

    On to the Predisone- he suggested this for my autoimmune disease and autonomic neuropathy. I don't ever recall hearing anything good about this. Is it used for these purposes? I was always thinking respiratory and allergies. I've heard side effects are awful and it can make you act crazy??? Any experience or advice on this?????

    Oh, and this plan I'm on doesn't cover 4 of my drugs that I need- Midodrine being one. It is very expensive! I can't even sit up without it. I'm so discouraged and I guess angry. So I have NO idea what to do. Monday I will start calling for help. In many ways THIS hospital who fired me is responsible for how sick I am now because of extreme errors, mis-read test results, UN-read test results (wore a Holter in April- no one even opened it until end of Aug. every day more than 20 inappropriate sinis tachy) there is a lot more but I just want to get well. Will these 2 things help???

    If it isn't one thing- it is something new. Kidneys are not in failure but close to it- just not working right. I'm wondering if this is from the IVIG rejection??? AGH.

    Any info about the space suit (OMG, I can't believe I'm even asking about it lol) or Predisone- I'd love to hear!!!!!

    Jen

  16. I never thought of Adderall as having possible effects on our adrenals... What symptoms do you notice? I take Addreall and have for about 9 months. It is one of the few (taken in combo with an SSRI) medications- along with Midodrine (off and on- I always take it but we seem to have a love/hate thing going-.sometimes it works greats- although other times nitvatvalk). I have lots of syncope and multiple concussions and I think it helps so much (Adderall) with my concentration and focusing, I get no SIDE effects either, not even energy. No loss of appetite, jittery, insomnia, guess I'm lucky.

    Yet I do have adrenal issues and would not want to worsen that... Any info would be great!!!

  17. Sue- I'm so sorry. I had a TTT at Mayo but honestly can't remember the position of my arms. One thing I have learned at "Certain Large Medical Facility" who specializes in autonomic issues- and this is MY experience only and for those of you who have had better experiences, I am so grateful- is that they seem to have tunnel vision, they dont like to look at the big picture! Each specialist you see concentrates only on their specialty. Looking at our bodies from that mindset can be dangerous.

    And Chaos- I could not agree more with you about the adrenaline!!!! She, maybe your hormones were not the same and we are talking 4 beats per minute! 26 is just as abnormal as 30!!!!

    I spent most of my 20's relatively "flare" free and I think it was because my life was SUCH a mess- married to a VERY physically abusive man- who liked to PUNCH me in the face, among other things. He also was/ is a compulsive gambler so our financial sitatuaton was always a MESS (example: this man once went into the closet where I kept Christmas presents while I had the kids sledding- and emptied it totally. He took every single thing back to the stores, returned them for the money, and headed to a casino. I had made it quite easy for him-all receipts were in an envelope labeled "Christmas Gifts" in plain sight. He got almost every penny back.. Over $1400- I'd been shopping since July. Oh, I might add- this was 2 days before Christmas. Luckily- I checked the mail that day and ibreceivedca Christmas card from my Grandma- who is very generous and more than enough money and she suspected my life with my EX was not all I pretended it to be (but I tried to hide it from everyone. I was humiliated that my life came to this.). Back to my point- I was ALWAYS flooded with adrenaline. That's was the only way i could function. There are thousands of even worse stories than the one I shared- but I was just as addicted to adrenaline as a heroin addict is to their drug. I know without a DOUBT that at least with me it's a factor. After I finally left him (2 weeks after that Christmas) I moved , got a new job, and spent the next 2 years much the same, I was a single mother of 4- ages: 8, 6, 4 and 2. Life was always a complete chaotic crisis after the next. My ex wouldn't leave me alone, he would somehow get in my house in the middle of the night- if I wouldn't wake up- he would steal things, get in my computer, take any money I had out of my wallet. Sexually assaulted me a few times. Finally I knew I had to leave. I was afraid he'd kill me. I found a note on my son's birthday- enjoy it- it's the last one you'll ever be alive for- profanity. Every day therewasa nite like this. I moved about 2 hours away to live with my brother. Then my long distance boyfriend made the HUGE leap of faith- my kids and moved from Cali to Wisconsiin. Kids on I lived on our own while we got to know each other- and my kids and his his bonded with us and each other- then we did it! Got married! Major stress to bond two families with 4 kids-so my friend adrenaline stayed with me. It wasn't until about a year ago- things had calmed down- got appendicitis , 6 weeks later major knee injury- and though physically I hurt- mentally I was good. I'd gone 4-5 months without work (very high stress) and I felt calm and at peace. No one could believe how well Rob (new hubby) got along and how well we all get along (weird, I know, but my BFF is his ex-wife). I finally felt at peace for the first time ever in my life, childhood with two abusive, alcoholics and drug addicts didn't give me the best start, I raised my brother.

    I finally felt that was ALL behind me. Two weeks later- first syncope in many years. That was April 2011. A year later- I can't get out of bed. I have organ failure. . Spent 2 months in hospital. I stand 30 seconds- I'm unconscious. 10 concussions. Cognitive dysfunction. Bladder doesn't work, and kidneys don't either, and thyroid is crazy. The list goes on. None of the really bad flares (like now) happened until I had peace and became less of an adrenaline junkie. I'm convinced of a connection somehow, but no one takes me seriously.

    I know that was VERY long but wanted to show the difference in my "old" life and "new" one. You'd think peace, love ad happiness would make me healthier. Instead, it activated these diseases that were just waiting. I would love to see someone study a connection. Maybe it's not there for all of us- but I'm sure it's there for me!!!

    Sorry for the length.. I didnt mean for that to become therapy: but it did. Now I owe all of you a ton of $$$.

    Jen

  18. I wonder how this method works for some, like Lemons, yet not others- like me. After almost a year in this flare I decided about 2 months ago-. That is IT! I'm standing, walking, living "normally" until I DO faint. I've been exercising all along- leg strengthening with weights in bed, arm exercising with resistance bands, and supervised recumbent bike every day- plus home PT 3 x a week. The doctors are always very shocked at the good shape and tone of my muscles-considering I had been bedbound since Nov.

    OMG- before I start my rant- LEMONS- I have to preface and say this is NO way personal toward you! PLEASE know this isnt about you personally- i used your name as an example because you have done amazing. I know you STILL feel icky but you are taking your life back- i admire that so much!!!!! You are not letting this win or beat you-- where as I feel like it is kicking my ****--day after day!!!!!!!! Every single time I try- I can never get beyond 30 seconds to 1 min. standing. I sit up first- let my body get used to it... Always get pre- syncope and sometimes actual syncope while sitting. In fact, on Friday I had syncope at my doctors appt in my wheelchair. Hubby said head just fell to the desk and slid out if the chair. I have tried gradually raising myself with pillows to slowly get my body adjusted to gravity (I've done this 20x or more and always take at least an hour to do it yet have never had success). I try 5x a day- every day- to stand with Rob (husband) right there right next to my bed. So far - all of those times- longest I've stayed conscious was 1 min. about a month ago. Usually 30-45 seconds, I'm down. My BP gets pretty low. We can never read it on our home monitor- it won't puck it up- but at hospitals it will be 40/20 or lower Ith 180+ pulse. I had an appt. with my neuro yesterday and be told me to stop trying. I'm unnecessarily causing syncope and lack of oxygen to brain and now it's taking longer and longer for me to wake up- 3 -5 min where it used to be 1-2 min. I just am at a loss now. If I stop trying- I will never improve-but the trying is not helping and my other autonomic systems are a lot worse: bladder function, adrenal surges, headaches... And I have had 10+ concussions and my neuro tells me every time I see that has GOT to be a priority! Avoiding anymore head trauma. No one has an answer for me- just a big long list of things I can't do!!! I know it is complicated and we all respond differently... Another appt. on Thurs. for another "We've never seen anyone like you- can parade you around to our students and residents?' Sure!!!! Maybe one if THEM will have my miracle. What on earth do I try next?????????????

  19. My biggest concern is not so much whether I will grow old or not because who knows??? Seems like diagnosis list is a mile long and no one can figure out how to treat me so I just don't think about it too much.

    I really worry about my brain function. I've had a total of 10 concussions in my lifetime. I'm 38. Of the 10, 5 were "severe" with head trauma. 7 of the last 10 occurred in the last year. At this point, who knows how many I have had, I still have syncope daily and I don't always know if I've hit my head. So I know of 10 for certain. That is my biggest concern. I already showed some cognitive dysfunction on a test I took last month compared to one from 3 years ago. More worrisome to me- is that I can tell. It is harder for me to do things. My memory is so much worse. My retention of written and verbal words has diminished by more than 40%. I'm a grad school student and had to take this semester off. Somehow, I completed last semester even though I was hospitalized for 75% of it. I had 3 of those concussions in November and I've been I much worse since then. It is my goal to finish and I plan to go back in the fall. I'm 3/4 done- I can't just give up- but in Jan. I could hardly read two sentences without forgetting and I knew in the long run a break for my brain made sense.

    I already feel as if I'm such a burden to my family, but at least I'm still me for the most part. I guess worrying about it does very little good but my main concern at this point is preventing syncope and head trauma. My husband is an only child- his dad died when my husband was 13 (of a head trauma which just adds to his anxiety- I feel as if his stress level is just off the charts) It has been just him and his mother for all of these years and they have been so close. 2 months ago SHE was diagnosed with dementia. As if he isn't facing enough right now :( The thought of him having to go through that with me just breaks my heart.

    That's my story and my biggest concern. I just don't know that the research is really there yet to predict outcomes in situations like mine-

    Jen

  20. Both of my pupils are almost always fully dilated.... But my left is about 25% larger than my right I'm told. It seems as if every time it's looked at, it is bigger on the left, so I'm not sure if mine is related to sensory overload or if it always enlarged. I do know that my left communicating posterior artery in my brain in diminutive for whatever reason- a common sign of people who have a small artery on either side of the brain often have a larger pupil on that side as well.

    Jen

  21. I am where you all are. I have so many issues that seem to connect but not sure if they do. Even my providers at major centers can define me as anything but a "medical enigma." I laugh about that because it's actually says that in my discharge papers- lists all my DX and here is a long list- and state I'm a medical enigma. Like "We have NO idea what to do Ith you." but at least they aren't giving up. Maybe there is no ONE answer for me- just a perfect storm of genetic diseases and a very aggressive Autoimune Disease. I would really love to know what is casing all of this but so far it's a mystery to everyone, and I have seen doctors who are considered experts.

    Maybe one day.... My main concern is not for me, but my kids, future grandkids etc. More awareness, research, studies- anything possible to learn as much as we can about cause and treatment. I am more than ready for an improvement, believe me, I've only gotten worse instead of better, but I also know the combination of my particular case is so complicated it seems impossible to put the pieces together. And we all respond differently to treatment, we all have differing symptoms and causes.

    As long as WE never give up and keep searching and keep the doctors searching, it will happen. Maybe they are closer than we know!!!

    Jen

  22. My balance issues have always been horrible. I once had an assessment done and was told the same exact term, ironically nough, a couple years ago (before I knew I had any autonomic, autoimmune, EDS or anything) that I had the balance of a 90 year old and I should not be walking without a cane. Well, I knew my balance was bad but I wasn't using a cane in my 30's unless I had no choice. It's the same whenever I do those neurological tests.... Touch your finger to your nose.. Eyes open then closed. I can barely do it with my eyes open and usually miss but with my eyes closed I usually hit my forehead. I am definitely positive for POTS bd at ths point am considered in Autonomic Failure- caused by my Autoimune Disease (the sudden increase of severity of autonomic problems).

    Interesting, I had always thought those balance and neurological problems were in fact connected to dysautomia of whatver kind. What explanation did he give you for your poor balance?

    Sounds like quite the work up! You must be exhausted!!!!!!!!

    Jen

×
×
  • Create New...