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Everything posted by jenglynn

  1. 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
  2. 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
  3. Oh Peace- Sounds like we have much in common. There are so many things I just cannot do- guilt. Things that they do that just physiologically drive me crazy may be normal kid things but I can't tolerate- I have to ask them to stop or isolate myself (and I have to spend so much time in bed as it is) - GUILT. The things they've witnessed- fainting, bleeding, my rapid decline- guilt. Missing activities- guilt. As juju know- list is endless. I love them so much and my husband and at times it seems as if I'm more of a burden than a wife or Mommy. I know that sounds like whining and melodramatic but I wonder how this is going to affect their lives. Some kids only remember the hard parts of growing up- will they remember the "other" Mom I was? It's heartbreaking. Jen
  4. Peace- Our two boys- 11 and 13- are very sporty and they are always bouncing balls or tossing thing, jumping, floor hockey- these things drive me abolutely crazy, they ALWAYS have but in this flare it is so much worse. I usually just tell them to go outside but we live in Wisconsin so sometimes in winter (although not this one) that does not always work. I have a hard time with this- I struggle between my patience/tolerance level and Mommy Guilt. It's bad enough to have me for a Mom- so disabled right now I can't do any of the things they are used to me doing... And thinking "Okay, is this a normal kid thing OR are they being obnoxious?" but the ball bouncing sound is the worst to me!!!!! Jen
  5. I do not remember the name of mine- but it's the one that works with my iPhone. It has a cuff (arm) that plugs into the dock (which is also a charging station for my phone which works great) I like it and it is pretty accurate but when I'm standing it almost never reads it (but my standing is pretty low- 40/25 usually) sometimes even the hospital ones don't get it. The home models are more designed for people with high BP it seems. It tracks my numbers though- love that- so I can just show a doctor if they want to see what my BP has been. There is an app you download an your phone and then good to go. I think they used the "I" letter- so it's like iHealth or something like that. Jen
  6. Oh, and I'm surprised in a way but NOT surprised to hear about the results of that survey. 2/3 is such a huge number. My patience level and tolerance with doctors is so paper thin right now. I'm so tired of getting treated as if I am wasting their time. I called my neurologist last week about ANOTHER concussion (number11) at the major facility I go to and won't use names. It took him 4 days to finally call me back. I had gone through IVIg rejection in January. My labs were a mess. Every organ system was affected and my blood as well (hemoglobin, hematocrit, RBC, WBC, ferritin) They are all mostly normal now. But my kidneys are still abnormal. I'm also having major bladder issues with a bladder infection I can't get rid of. I'm sure, kidney related. I was supposed to see the neuro in March 2 weeks ago and he checked my labs and said we would have to wait until kidneys are normal before we can re-check my autonomic system. I asked what if they aren't normal by my next appt? He tells me "we reschedule" and just waiting until the IVIG is out of your system. Okkkkaaaaaaayyyyyy..... Why don't we check my kidneys and see what the problem is and be PRO active? No, we just wait. Meanwhile, I'm still in the same boat I was when I arrived. When he FINALLY called me back about my last concussion I could tell he was irritated I was wasting his time because he told me he had already explained everything. Me, being me had to say "Well, you must keep in mind I have some significant cognitive dysfunction due to now 11 concussions- short term memory is one.". So I was joking with him (I thought clearly because I was laughing) and told him I was submitting my case to Mystery Diagnosis, OMG! He freaked out! Lost yelling at me... "You have three VERY complicated and rare illnesses plus other health issues and they HAVE been diagnosed so there IS NO mystery! We just don't know how to treat it successfully at this time." WOW! Defensive much? I'd rather it be the other way around! Treat it- who cares what it's called. I feel like another file in their precious research study and not as a real person really suffering. I probably won't even know my own name in 10 years after 11 concussions. Who knows. But that's not ther concern. Their concern is the research they are doing on Autoimune Disease and Autonomic Function. Great! I'm thrilled- but they won't look at the big picture and have such tunnel vision. It is frustrating and I find this with practically every doctor I see. I just want A life back- I've accepted I'm not getting MINE back.... Anything would be better than this misery. Jen
  7. Hi PotsGirl, I had the same issue- very bad syncope- almost literally every time I stood up. I started at your your dose of 2.5 and currently take 15 mg 3x a day. I had lost a lot of weight since taking it also. I am 5'3 and weigh 104 pounds. I know that doesn't sound horribly underweight but I feel I look and feel best at 125-130. I'm pretty "curvy" I guess and really large chested which DO NOT get smaller as I lose weight, unfortunately!!!! When I first started getting this flare I was 145 so definitely overweight- but but fit and firm I think because I worked out a lot and it was mainly muscle. I would say in the last month my weight has stayed stable. I wonder if that side effect wears off after time? Maybe the severe loss of appetite wears off? I have been taking in since September- at 15mg since Nov. I don't really get any of the other effects you've described except I get the chills, goosebumps feeling. I could get headaches from it, though, but I cant think of a time I dont have a headache but I've attributed those to my migraines or concussions. It has helped my syncope quite a lot but I also don't walk. Have not been able to since Nov. because of the serious head injuries I was getting (one WITH a helmet). But it decreased my syncope by at least 50-60%. Even crawling, I will faint. The loss of appetite I experienced was severe. Just the thought of food made me want to gag. Having had so many concussions, I stopped Florinef because the headaches and felt like my head was in a pressure vice. I know some people who haven't been able to tolerate Midodrine do take Mestonin. I tried it was not able to tolerate it.. You said the Midodrine gives you energy.. How does affect your syncope? It is pretty successful.?
  8. Interesting.... I am so home bound that it is rare I go anywhere- but we have 6 kids- so the noise level gets high- and I have a real problem with that and need to get away from it or they all need to tone it down fast. Well, this weekend my brother and sister are visiting and I decided I am getting OUT and doing something and everyone wanted to go to a hockey game (like kids out if high school before college level so not a huge stadium- they play at the same rink my boys play in). Everyone except my hubby and I went to the whole game but I know my max would be an hour... Because cant sit in my wheelchair much longer without syncope. I've been to so many hockey games, I know what to expect... But last night with the yelling, the music, the lights, etc... I was immediately in a situation where I felt like it was between an adrenal surge and an anxiety attack. My left leg leg and arm started having jerks, HR was 180- next thing I know I'm lying down and had had a syncope episode. We were there less than 15 minutes. Still trying to figure how the sensory overload would drop my BP that fast while sitting- it was so discouraging. BUT- lesson learned- no major sporting events. On the rare occasions I go to a store etc I experience this but at a much lower intensity. It's very interesting to me because my son used to be this way as a younger child (age 1-8.... He is almost 12)) but it got better each year- he is severe ADHD and ambidextrous which actually I just learned (total side note) is a HUGE risk factor for ADHD and other mental health issues- no dominant side of the brain I guess but he also was diagnosed at age 5 with Asperger's. I don't see many Asperger's symptoms in him so if he has it- it is very mild. My nephew also has Asperger's and is moderate-severe and really struggles with sensory issues and has since an infant. All of these conditions of the brain having overlapping symptoms is so fascinating. Jen
  9. It seems like most of my emotions are dictated by POTS/ Autonomic Failure/ and meds needed for them. But to me, this is the chicken or the egg question? Not sure if the illness causes the emotions or vice versa???? Jen. P.S cognitive problems are more due to head traumas/ concussions from syncope vs. POTS
  10. Brenda, Good luck with your decision! I live in La Crosse WI but would easily go to Milwaukee to find a endo that will actually take me seriously. If you or anyone hears of one- please post!!!! The ones I've dealt with thus far act is if they have no idea about my thyroid and how it works with the autonomic system... It's almost as if they ALL specialize in diabetes... That's what every single one of their bios say- believe me, I'm grateful to NOT be diabetic but would be nice to at least be HEARD. Abnormal labs are abnormal labs, right? Dismissing it because I have an Autoimune Disease and that "probably" what's going on is not an answer!!!!! Jen
  11. GEEZ.... I was hoping to get answers but not responses saying that you are having the same issues :mellow: It is just awful. I know it seems trivial compared to everything else- but I feel unattractive enough as it is... and stuck in bed all the time- its just depressing. I am pretty sure that it is my thyroid but no one seems to want to investigate and I am growing weary of asking again and again but something just isn't right with this. I swear, I DO have a VERY VERY MEAN autoimmune disease and it doesn't play nice with me at ALL!!!!! It HATES ME! Will attack anything and everything. I just wish they could figure it out but it seems like every time I see another doctor we just find something else instead of improvement. Just feel blah. Sorry... it is just one more thing, right???? And I guess a trivial one at that compared to what many of us face and many many others!!!! Jen
  12. Does autonomic issue cause hair loss or it is more likely thyroid or meds? I know, everyone loses hair every day- but it has gotten to where I don't want o wash it for fear of losing more! Just comes out in clumps!!! I've lost about 40-50 % of my hair! Luckily it was thick to begin with.... But this is really starting to bother me. Gee, I get to be bald too? I can't get ANY endos to listen. TSH is hyper- .08 I think or .05. T3 T4 fall in very 'hypo" normal range. All I hear is that my T3 and T4 are"fine" but very borderline but then something is up then if my TSH is off, right? they just say its my autoimmune disease which is very aggressive just messing up the NUMBERS but your thyroid is fine, I'm so tired of hearing about this "Aggressive Autoimune Disease" that apparently HATES me! But not treating the issues, same with my kidneys- still aren't back to normal since IVIG rejection in Jan. What do I hear??????? "Well, your Aggressive Autoimune Disease....." Wel maybe we should find out what's WRONG with them instead of just waiting to get out of my system. Who knows? It may NEVER be out and mutated with my other cells OR it could be out and just damaged my kidneys! Ugh! No one listens and I hate to be that pest of a patient but I am. But I have gone through enough! Can we PLEASE leave bald off the list!!!!! Jen
  13. WELL, this is something I need to work on myself- so I'm not going to have wonderful words of wisdom. However, I TRY to always be positive around my kids. I guess I feel bad enough that they are having to suffer with a debilitated, bed-ridden mom and have all seen me faint in the hundreds of times I'm sure- and all have witnessed serious injuries. I try to keep things as normal as I can with them and I don't really know how I do it... It's like the Yoda quote: "Do or do not, there is no try." I just make sure that there is no there option for me and I do it. Not to say they have each not witnessed a breakdown or two over the last year- its as minimal as can be. They already see me physically suffering and in pain- to watch me mentally break down would be even more devastating. Unfortunately, because my husband has to "care" for me- which mostly entails getting or carrying heavy objects, wheeling me around occasionally, taking me to ALL my appts.. Full time job it seems- he doesn't really have to care for me. I can crawl to the restroom nd safely use it- must use a timer (major bladder retention so can only sit 10 min- which is rarely enough time), I'm pretty organized in my little "area" so most everything I need I get myself. He also helps me in and out of the bathtub due to fall risk. But his BIG job is taking over all of the household duties I did and 6 kids (I did it with a full-job but we won't go into that). We are together all the time, and it seems like in some way we were always talking about my illness. More I would talk, more angry, frustrated I'd get and he usually got the brunt. I started doing a lot of research on Caretaker Fatigue and stress on our caregivers nd realized the amount of emotional AND physical problems THEY can develop- not to mention resentment or anger. So I decided to try to other outlets for my "venting and complaining" (sorry, guys, you're one of them . Others: journaling- I have "happy" journals and I also an "angry" journal.. So what I would say it to my journal instead. I'm lucky to have a friend in the medical field obsessed with my condition and trying to cure me- so she's a good one to vent to because she always WANTS to hear. So that's I try to keep my family out of my complaining. You seem to be asking more about not complaining at all. Some people ARE be to live and carry on relatively normal with this condition, feel yucky, but adopt a mind over matter mentality. I am not there yet. Can't stand without syncope or sit at times- and lots of organ involvements. Some things I I'd when I realized it was taking over my life: -Limit research- for some it is healing- for me too much more anxiety. 2 hours a day- max -Laugh!!!! Funny books, movies, TV shows, people- comedians on the internet. Just laugh as much as possible, -journal- writing helps me sort an organize thoughts. You could do a Gratitude journal which forces you to think of ll you have to be thankful for. And if it helps to write out your vents/complaints too... I don't combine mine but to each her own. And pm may get more agitated Writing it down. - Hobbies!!!! Find as many a you can and do them. I do knitting with the cheating loom. I also LOVE photography but don't get to take pictures much- so I steal my sister's off Facebood and photo edit. I LOVE doing this!!! Read, or maybe volunteer. That sounds nutty but started volunteering for our church doing mundane office work. It keeps me busy and productive- but it makes me feel as if I'm giving back. If your're into blogging- maybe do that. You know you're talents. Use then. -Music?......Love it! I listen to a lot of 80's/ 90's music- yes I'm old- but Bon Jovu has been the ONLY man who has always been for me for longer than remember (I'm 38) -Friends..don't isolate You will get more lonely. If they aren't calling, call them. It may be as simple of them not quite knowing what say. -Lastly, try to keep the negative thoughts at bay. When I catch myself having those "WHY ME" moments I think that people don't have chance to get better,we do (or MIGHT), we at least have hope. Not everyone does. You control your thoughts and your thoughts control your life. Just some ideas I use-I have lots of others-if you want more info- please PM me. Dont feel like a burden. My hubby gets tired of it too aim sure, if you have siblings? They may feel left out. I am sure you are not on parents' or family's nerves. They are worried I'm sure and anxious, so everything they hear scaring them. A quote I've loved, but I can't remember who said it.... "Instead if thinking about what you're missing, try thinking about what you have that everyone is missing." I'm sure there are any- focus on that... Another quote by Robert Frost that I love "The only way out is through.". Much as we hate it- we are stuck with this illness we figure it out. So just live day by day, hour by hour. Doesn't mean anything is going to "cure" us but by vanishing the negative it will improve. I know you are thing: 'Easy for you to say". Not really. I'm struggling too. Review the grief stages bd that may you insight on where you are now. It is normal to feel sad and mourn your former life.
  14. Interesting about the memory- yes that was one of my major cognitive losses- short term. Well I can't say it helped with the fainting LOL.... Because I fainted every time I was out of bed- but maybe I took too much like we already said. I'm going to go do some research on my own now. Thanks Issie!!! Jen
  15. Kim- you reminded me- another major sign for me is vision problems.... Gets blurrier and LOTS of double vision or like I am looking through a strange looking glass. Hard to explain- but just visually perceiving everything in very odd ways. Jen
  16. I haven't had my hair cut- and I'm a cut AND highlight kind of girl too- since the summer. My hair is a MESS. It looks horrible plus I've lost about 40% of my hair as well (I'm thinking thyroid issues no one can figure out) I've been debating about making an appt. bu I'm basically bed bound so was wondering if it would end in catastrophe. Sounds like quite a few of you get symptoms. Darn!!! I wonder if I can pay a stylist to come to my house?? Hmmm.
  17. I wonder..... It seems like I need such HIGH doses of anything before it even makes a dent in my symptoms. So strange- I am envious, all of you are all at such lower doses. My Midodrine is 20mg 3-4x a day, Valium 10mg 2x a day, Florinef is .2 mg, everything I take has zero effect until I am at mass doses even if its a drug I have never taken. I also take Paxil and Adderall- not sure of their usual Doses but I think I'm at 40 mg of Paxil and 60 mg of Adderall. And I have ZERO side effects and it makes me think they aren't working at all. Jen
  18. Live and learn! I keep trying to call my neurologist all day to find out what dose he wants me to take... still hasn't called me back. And I have an appt. with him this week... Thanks for your help!
  19. I guess it depends on the hospital.... My local hospital doesn't charge us personally for our records. They may charge insurance companies or SSI. I am not sure, but patients get them for free at our hospital. Jen
  20. Okay- so on Sat night if I took 500 mg that was a high dose and it could happen that fast. So I was really REALLY stupid!!!! Lol
  21. It did not cost me any money for my medical records but it cares by hospital. My sister is the manager of our Health Information Mnagement dept which includes medical records- so she just sent me a zip drive the other day so I have PDF lies of everything and CDs of all my radiology scans. It's not special treatment- anyone can request it that way But I e signed a release for her to have access so I get mine a little faster. I definitely recommend getting your own personal copy of ALL of your records. My sister goes a little overboard but. Have I have binders filled with paper copies that we started years ago, I have CDs with all of my records and I have it in email. And unless I need a specific record for a certain doctor, I update it every six months. But I had an incident at Mayo when they didn't have a file from an appt just 2 weeks before- I just called my sister and she emailed it right to my phone. It is good to have your own to bring to appointments and also review yourself. I JUST found a CT scan that was taken a year ago and I was told was normal- but after I read it- states: significantly dimunitive posterior communicating artery.....so the conclusion stated that in the conclusion findings- all in lowercase letters for whatever reason- then in bold capital wrote- otherwise unremarkable CT because they were looking for a hemorrhage after a concussion. When I looked up this condition I realized it remarkably increases my risks for an aneurysm- which my grandmother, great-grandfather (her dad) and his brother all died from in their 50's- sudden deaths. Also, head trauma and migraines add to the risk. One warning sign is dilated pupils which I have always, but my left pupil is about 20% larger- same side as the small artery. Good news- now ( or a year ago I guess when it was done) I had no sign of an aneurysm in that artery but I definitely am at a higher risk. And I have a connective tissue disorder (which I do) that increases. So you can imagine I was NOT happy to find this information out myself! Bviously, my neuro only read the "unremarkable" or maybe this dimunitive communicating artery thing is not anything to worry about. From what I've read- it is a definite risk, but I've never spoken to a doctor about so I don't KNOW. I hope it is NO big deal because I already have enough wrong with me LOL. So sorry to have gone off on my personal tangent and nothing annoys doctors more than when you interpret your tests and question them... LOL but regardless- I will be bringing this up- hopefully to be reassured. All of that said- its a good idea to have your own copies should you ever need them. And good luck with your SSI. I'm also in the process but luckily tha application part is behind me. They didn't ask me for records but to provide dates for each appt. lab, procedure, radiology, etc. Are you KIDDING? Lucky for me, I receive some help from an organization called Western Wisconsin Cares because I need home health care and therapy, etc... So I have a nurse and social worker and my social worker did 95% of my application!!!! Jen
  22. Okay.... I tried Magnesium over the weekend like my neurologist asked as i stated above. Saturday I took it only in the evening and did the same yesterday. I just took 2 tablets on Sat. (he didn't give me any dosing instructions) but after Issie's warning yesterday about lowering my BP last night I took only 1 until I call him and find out: why am I taking this and how much. I don't know if it was a coincidence but I had 9 syncope spells yesterday. I told my husband it was Syncope Sunday lol. I haven't had that happen since Nov. when I was still walking. I still have 1-2 a day even while crawling but this was crazy. I had a rolling walker thing that I use- not to walk but kind of as a wheelchair. I sit on the seat and get pushed by my hubby. 5x pushing me the 20 feet from our room to the bathroom I was totally unconscious before we reached the restroom. The other times were me crawling to get this or that and once was trying to get downstairs. Sigh... That could have been bad lol but I guess I kind of just gracefully tumbled down. And the good news is that I have a couple bumps and bruises but no injuries and my noodle stayed nice and safe because I put my helmet on after syncope # 3 whenever I got up. So I'm wondering if it really lowered my BP that much? So Sat late afternoon/evening I took and yesterday 250mg. I never even checked how low my BP was- but when I'm lying down its almost always going to be fine and I wasn't going to sit or stand just for numbers. I think I know from the fainting and 180 HR it was pretty low. But it doesn't seem likely that it would make a difference THAT fast- after ONE day? Oh BTW- all of these occurred after 5:30pm last night- except 2 which I thought nothing of because that is normal. So Issie- or whoever else wants to jump in- what are your thoughts? Would it be typical to lower my BP that fast? I don't know if those doses are high or not. I did not get any of the side effects you mentioned- thankfully. Don't notice a difference in headaches yet either, but again, I'd expect that to take time. Maybe I was just having a bad day? Jen
  23. I am so sorry to read so many of us struggle with this I am in the middle of a rather extensive cognitive battery of tests- Sadly, it does show "cognitive dysfunction" ( I had testing done 3 years ago) and compared to then I've lost function in quite a few areas- some more significant than others. I guess the only "good" news is the neuro psych said I don't have any "impairment" (yet) so not being as highly functioning is definitely better than being impaired. My testing is due to my Post Concussion Disorder (have had 10- 5 of the 10 pretty severe) so I don't know what causes my dysfunction- brain damage from concussions, POTS, oxygen loss due to so many syncope spells, or a combination. It is very scary, though, because one of my greatest fears is what my brain be like and WHO will I be in 10 or 20 years????? Jen
  24. That must have been scary, Heather!!!! My HR drops when my BP is high nd vice versa. After a high dose of Mestonin given to me st a hospital my BP got to like 200/140 (CRAZY high for me- normal without meds s like 70/55) and my HR was like 35 or 40- cant remember. I felt like I was going to die and my head hurt SO bad I thought for sure I had an aneurysm or was having a stroke- just the high BP- but it was terrifying for me. I had all of those symptoms you described- but I know mine was from the med. I don't think I've ever had it just happen. I know we all hate to hear this.. But MAYBE a call to the doctor tomorrow could be a good idea. Just to report it? I know, I know... I feel the same way- but that's a drastic change and not usual. I hope you're feeling better now??? Jen
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