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Everything posted by jenglynn

  1. So it almost sounds like a natural Beta Blocker then- lowering HR and BP?
  2. 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
  3. 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
  4. 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 ma
  5. 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 bett
  6. 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
  7. 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 re
  8. 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
  9. 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
  10. 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%
  11. 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 yo
  12. 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!
  13. 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
  14. 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
  15. 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 s
  16. 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.
  17. 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
  18. 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
  19. Okay- no clue what happened that response????
  20. 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 disorder
  21. 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- f
  22. 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
  23. 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 tha
  24. 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 we
  25. 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,
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