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Everything posted by jenglynn

  1. I should say that I DID notice a big change in my relative success with Midodrine when I started my anti-depressant (Paxil) and Adderall for dopamine. Prior to starting those meds, my crash was very much like what everyone else is describing. I still get quite the crash and can tell when it has worn off immediately. But my overall success with Midodrine and its effects were helped a lot by adding the Paxil and Adderall. Midodrine does help keep my BP high enough to function sitting up but I believe Adderall also may raise BP as well so it could be the combination of the two. Jen
  2. Thanks Issie!!!! I am glad to hear that your diet changes have helped. That is ONE of the things I haven't tried so it is definitely going to be the next thing. Only problem is I am so debilitated at this point my husband or the kids do all the cooking.... not sure if they will agree to it. Maybe I will just start with me One of my problems is I have NO appetite so I have to forcefeed myself as it is. I think there are a lot of factors for most of us as well. My parents told me that I got my vaccines (my first set as a baby at 2 months) and I developed this terrible illness. They neve
  3. I just applied but haven't heard back yet... but I think you just have to anticipate that you won't be able to work for at least 12 months. I am not by any means an expert, but they accepted my application and I received a letter back saying they received it and it was under review. I actually HAD to apply for SSDI because I had applied and was approved for Long Term Disability through my employer. What a process!! But was approved within a week and thought great, I am all set. Then a couple weeks later I get a letter from LTD saying that upon their review my condition appears that I "MAY"
  4. Thank you everyone for your responses!!!!! The fact that you take time out of your day to think about me and my condition and comment about it means the world to me!!!! I can't even express how much. Naomi- I have always been prone to cold sores but these outbreaks have been AFTER the IVIG. And they have been horrible outbreaks. I have had multiple sores at once but NOTHING like this. Usually, I get some tingly warning a day or two before- but these are different. I will just wake up with FULL blisters. Everytime, there are at least 20-50 depending on the outbreak. My guess is that the
  5. I don't recall exact numbers- but it was "significant" it the words of my neuro, whatever that means. Like I said, I understand near NOTHING about autoimmune diseases- other than they seem to affect everyone different. Like my IVIG rejection, please someone tell me if igot this right, with my first treatment in Mayo (had one course but over 5 days) I had a reaction- they were normal reactions- I thought. They had me so compressioned up there I was a mummy- knee highs, then full leggings over those, compression undies (VERY attractive and a binder- so I couldn't really SEE my body. But got typ
  6. I keep hearing "plasmapheresis" addressed to me in the forum but it's never been offered by Mayo. Everything they want to o is experimental immune therapies. Is plasmapheresis the one where they take your blood out, clean it by spinning it or something, and then give it up? So almost like dialysis? Thanks! Jen
  7. Our body is just amazing. And I know doctors are doing SO much research into this... And I don't know if it is a coincidence because now I have one... But I've talked to so many people with autoimmune disease ( maybe its the pregnancy phenomenon- when you're pregnant or trying to get pregnant- you see pregnant women everywhere- although autoimmune disease isn't obvious- anyway) I wonder if the occurrence of them is increasing or if there are just better diagnostic tools. Or maybe they've always been quite common and not noticed because I didn't have one. I guess I question- is it in what we a
  8. Yes, I was expecting this answer... I am not planning on abandoning my plans but I am also not going to abandon the medical community as a whole. I WILL go to the Mayo appt and see what they advise. I admit to being very nervous about undergoing any further immune therapy treatment... I have just decided that I will be open minded but I won't be making any decisions that day. I will go home and do some research and utilize some resources I have found before I proceed. Much as I hate to admit, I knew that the answer wasn't going to be that simple. It just seems like the more stress, adre
  9. I'm so sorry Goodnuff. This year has been a struggle for me physically too. I'm a fainter and lots of injuries, concussions and cognitive problems from those. The Neuro Psych I see says that may contribute to my mood swings as anything else- but how do you know the difference? I really feel for you.... My husband and I have struggled a lot as well. I think he has Caregiver Fatigue and is tired of me being sick. Plain and simple. Sometimes he will be impossible for 2 days and then, he's fine again. I have x kids: ages 9-16. It is VERY hard on them. When I first started fainting, my little one
  10. I was diagnosed with POTS in late August/ early Sept. of 2011. In April I fainted for the first time with this flare, and I was very fatigued. I also felt a lot of "anxiety". I was occasionally fainting (meaning once a week at most). I was having severe breathing issues- feeling short of breath all the time ( that has gotten "better" but still comes back with exertion. I think it was so bad then because I had really altered nothing about my life and was a busy mom with 6 kids, grad school and a full time job). But the shortness of breath was just "THERE" one day in mid- June. I attributed the
  11. I hope only the ladies read this, because it may be a bit much for the guys to handle.... It really irritates me to have to think about "birth control" as we have six children and I've a tubal ligation- but ever since my tubal my periods have been nightmare (although there is NO doctor on earth who will admit that it changes ANYTHING in your body but I digress) but since POTS, autonomic neuropathy, autoimmune disease etc... it has been nothing short of miserable. My periods are so heavy, painful and I am absolutely unable to function even at the low level I function NOW. My clotting (I know,
  12. As far as I can tell, I have always had it and it has been progressive and up until now has been worsening. Have not had any improvement up to this point- but certainly hope that this won't last forever. Jen
  13. I do have a cheaper helmet, and I DO use it but the doctors have told me it is almost a waste of time. I guess I can get a concussion even with a helmet on. But at least I am hoping to prevent open wounds and maybe reduce the severity of a concussion. Thank you all for the kind words. I guess I don't think of it as strength or anything other than surviving just like each of you do every single day. We all face our own battles. I just wish that my children and husband didn't have to suffer through this with me. THAT is what makes me sad... I just think of everything my children especia
  14. It's kind of a Catch 22- I will. My autonomic neuropathy will NEVER get better without getting vertical- but I can't injure myself anymore or I won't be me. That last concussion convinced me of that- I'm an easy going person but this rage and anger was crazy. I do walk a little every day, but only with someone with me- and I stand several times a day, by my bed, again with someone with me. I also do the gradual raising of myself with pillows during the day. Still can't get past that 45-60 second mark. I try to increase.. But never stay conscious beyond 60 seconds. Do my recumbent bike (with
  15. Ugh... Sorry ANY of you have to get injured. Goodnuff, yours sounds like mine unfortunately. I also have been diagnosed with TBI. And now cognitive dysfunction. Lemons- I used to get a lot of warning but starting around Nov. the warnings got less and less. I've been a fainter since childhood so I'm very used to it- but up until this "flare" I MIGHT faint 2-3 x a month at most- starting at age 10 or 11. In Nov. when I was still walking I was fainting 10-20x a day. And in Nov. alone I had 3 traumatic brain injuries and bad concussions- and one was terrible because I was out so long and my poo
  16. Hi Everyone! I am curious about this. I know not everyone *** POTS actually has syncope- but for those of you who do- Do you frequently get injured from your syncopal episodes? I am pretty much always covered in bruises... all over my body. Not just from syncope, but I have very poor balance. I do not "walk" except very rarely because of my fall risk. Our home is not wheelchair accesible at this point and we have 3 levels. So when I need to move around the house, I crawl. I still have syncope just as frequency crawling as I did walking, but I am closer to the ground and it is rare that I
  17. I guess I have a love/hate relationship with Midodrine. I am unable to tolerate Mestonin and have been taking Midodrine for about 6 months now. My orthostatic hypotension is pretty severe (without Midodrine my sitting up BP is usually 50/30- so you can imagine what happens when I stand up). Midodrine makes it possible for me to sit up but not stand. The problem is that it doesn't last very long so you have to be vigilant about your doses. Or I do anyway. I am pretty fortunate I guess... I experience the effects until its time for the next dose. I think I am one of the lucky ones who resp
  18. You are not alone... Of course all of us have different circumstances which leads to different feelings.. but I think we can all relate to feeling guilty. I feel it every day and I go through periods of time where I feel like SUCH a burden to my family, especially my husband who went from having a completely functional wife who took care of most everything to having a very ill, bed ridden one with very poorly understood medical issues but also congnitive problems due to multiple concussions. As a mother of 6, there isn't a day that goes by that I don't suffer from Mommy Guilt when I think of
  19. Sorry you were back in the ER and please don't ever apologize for "whining!!" that's what we are here for- to support one another. Did you find it almost a mixed blessing watching your children become adapted to your condition? I have struggled with the thought of what my kids have seen, gone through and adapted to with my frequent hospitalizations, syncope and especially head traumas that have happened at home. At first, when I would faint without injury, everyone would just panic I guess. I joke now that they are so used to it they practically just step over me and wait for me to wake up (wh
  20. Claire... I just read this post and am so sorry. I too am bedridden for most of the day, but I don't have a 6 month old. I can't even imagine how all of you manage with babies or toddlers. While I do have 6 kids... The youngest is about to turn 9 and our oldest is close to 16. In many ways, they are super helpful. We are blessed to have loving kids who are pretty compassionate toward their Mommy so I have more nurses and Mother Hens than I know what to do with at times. I wish I had some words of wisdom but I really don't. In fact, I just posted almost the exact same thing last week. I am a
  21. I love your attitude Kimbellgirl. I strive for that... Maybe I just need more time. I am still not at "peace" with my new normal and haven't fully accepted it yet. I truly feel as if I am bouncing through the stages of grief... But eventually I will get to acceptance. Every day to do start my morning with the Serenity Prayer, which we all know, but even typing the words brings me comfort: God, grant me the Serenity to Accept the things I cannot Change Courage to Change the things I Can... And the Wisdom to know the Difference. This prayer really helps me an
  22. Issie- you do so much for others on this forum. Your posts to me have genuinely moved me to tears more than once. You are an inspiration because you remind me what a gift it is to give of yourself to help someone in need. God Bless you for all you do!!! Your loving nature shines right through your words, day after day. I thank God for bringing you and this forum into my life. Thank you so much. The Bibke is also of great comfort to me and I have several books that I've received throughout my hospitalizations and illnesses over the last several months that have daily scriptures and inspiration
  23. Yes, Puppylove I too get this. It seems like mine comes with surges. I had this very horrible surge about 3 weeks ago that lasted 3 long hours. I was basically paralyzed- right side of my body violently twitching- arm and leg- my whole body in a cold clammy sweat, I had this strange headache- it hurt but not the worst I've had- but seemed to continually circle my head????? Double vision, random facial tics, I could go on forever! It was the longest 3 hours of my life and quite honestly, one of the worst things to ever happen to me. Right before that happened- which was about 1am- I would say
  24. Targs66- I can so relate to that feeling. In my "former" life I never used to second guess myself. Now practically every decision is overwhelming and it can be crippling and paralyzingly. Interestingly, I have never linked that to anxiety, but it certain is. Thank you for that insight!!! I'm sorry you have to feel that way too. Sometimes I look back only a year and hardly recognize who I am now- in all ways- physically, mentally, emotionally... I know I will get where I need to be one day and I think I need to be right in the middle of those two clashing versions of myself. Jen
  25. Me + Tedious is not a good combo... so maybe the embroidery is not such a good idea then Thanks for the heads up Jen
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