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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 never diagnosed it.. I was hospitalized with a VERY high fever- like 106 or something- and was there for a bit... but to my parents recollection- and mine- that was the LAST fever I ever had. I would get sick with various infections and bad illnesses all through childhood and never would get a fever. I know I have said it before here, but when I had appendicitis no one would listen because I had no fever (Dec. 2010).. FINALLY, they decided to take it out- 80% to rupture- so very advanced case- and temp was 97.1. It is just weird. One of the doctors at Mayo said that the high fever and illness I had as a baby could have "destroyed" my body temperature ability. I have no idea. But as far as I can remember I have never had my temp be above 98. That SEEMS like it would be immune related???? While I agree that my agressive autonomic dysfunction is not "caused" by any connective tissue disorder I was always bothered that Mayo would not look into it. Even separately from that, you know? Two relatives dying of a sudden blood vessel bursting in their brain. And that grandma was a fainter. And she was also very hypermobile like my daughter and I. And then with my daughter, she was born with a hole in her heart, has horrible leg pooling, fainting, dilated pupils, headaches, syncope, poor balance, multiple dislocations already, tends to have "low" BP but has never been checked orthostatically and I have checked her heart rate and no tachy (yet) but I think it is at LEAST worth looking into!!!! Something is obviously connecting SOME of this together. Yep, I take the l-lysine and have for years and usually keeps them pretty well under control. This time though- NOTHING helps. They are SOOOOOO aggressive. And painful!!! Jen
  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" qualify for SSDI so in order to keep my benefits I HAD to apply for Social Security. I don't know why, but I just didn't want to.. but I had no choice. You see, they don't "double pay" so if I get SSDI they pay me whatever they will pay me- and then if my SSDI is less than my LTD is my LTD pays the difference between the two. If SSDI pays me MORE then LTD would pay me nothing. I think (but am not sure) that if you get SSDI you also get a certain amount of if you have kids for their support, and I am not sure if LTD takes the amount received for the kids into account or ONLY my benefit. We have 6 kids but I think SSDI has a family max so I am sure the monthly amount I will (if I were to get it) won't be large. Not sure if any of that made sense??? The only good thing about it is that if SSDI denies me for whatever reason, my LTD company has attorneys that will fight SSDI for "me" (yeah right, for THEM) and do all the work for appeals etc. I am curious to see if I get approved by Social Security. Most people I have talked to have said it is usually harder to get approved by a LTD company than SSDI so that is a good sign. And my condition at this point anyway is pretty debilitating... but who knows? Maybe they will deny me. I am one of the luckier ones because I do have the long term disability and I don't think the financial difference will be much, if any, if I do get denied OR approved. Based on my calculations it looks like what I will receive from SSDI will be about $600 less than my LTD pays me... But I don't know if the LTD can factor in the payments I get for the kids, if I do get any. Jen
  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 IVIG irritated my immune system so much that the herpes virus woke up big time. ANY vaccine I get has always given me a bad reaction. I had a doctor give me the chicken pox vaccine about 10 years ago because he was afraid I would "get" it again as an adult and it is so bad. Well, I was young(er) and stupid and let him... and I was so sick in my life and ended up with the worst case of chicken pox ever. It is odd but I seem to have no immunity to chicken pox. I have had it three times... (8 years old, 16 years old, and 23 years old- plus the case I got at 28 years old with the vaccine). Every time I get it, it is the same intensity- it is pretty aggressive with me. I just pray I don't get it again but all of these herpes outbreaks on my face make me worry. I always wonder if the reason why I keep getting the chicken pox is because I don't get fevers so the virus is never killed? It is all speculation though... who knows????? My body has ceased to make sense to me since..... well.... it never has. Dizzy... Oh my goodness... you are NOT a pest!!! Please don't say that. I mentioned the gluten thing to my neuro to which he promptly rolled his eyes (just as he did every time I mentioned exploring my connective tissue disease and autonomic issues- which I brought up so many times he actually told me not to bring it up again.) Ugh. I have not improved so it's not like I will be losing ground. In fact, I am worse because of the IVIG rejection. Dizzy, I have heard SOOO many good things about going Gluten free, I am going to start researching it. Celiac disease is an autonomic disease, isn't it? Maybe it will be the answer???? So far, no one else has given me one and I don't see how it could HURT me. The chemicals, bacteria, bacteria, preservatives, and who knows what else???? WHAT is it doing to us? And I DID finally find a neuro at my local hospital to see me (none would prior due to "liability" or in my words "Lazibility" because they refused to learn anything about my condition so they just wouldn't see me because they didn't "understand" it. Nice excuse) But they just hired a new one and HE called ME and asked me to come meet with him (not sure how he got my info.... ) but we talked on the phone a little and he said that he had reviewed my record and he is VERY interested in testing me for my connective diseases because he was quite concerned to see that I have a daughter with connective tissue AND multiple syncope and blood pooling at 13- and that my grandmother AND her father both died of sudden anuerisms in their 50's and early 60's. He doesn't think that should be overlooked. So I see him in 2 weeks. But at least he wants to address it and doesn't tell me to SHUT UP. He said that he believes that my condition IS autoimmune but that doesn't mean we ignore the connective tissue disease all together. So wants to do extensive genetic testing. Another interesting fact- her and I both have chronically dilated pupils- ALL the time. That is neurological isn't it? Not related to connective tissue? I want to thank all of you again. Of course to me this is so important but I am just another member of the forum so you all taking the time to read and respond is just amazing. You have really become a lifeline. Jen
  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 typical headache achy blah.. So side effects kept getting worse, each day, my face would red, but no fever (I told these nurses that I don't get fevers) I guess the redness was normal. When I was transferred back to my old hospital, for inpatient rehab, of course still getting he same symptoms. I had tried a new med that day because I woke up with NO warning my mouth, lips, nose and skin between covered in cold sores. Well that night getting ready for bed, the nurse my hives- ALL over. They were a horrible case. They immediately gave me Benadryl and some other anti allergy thing. But hives were attributed to new drug. Also that morning, before IVIG did a ferritin check to look at iron and had gone from like 8 3 weeks before to th 80's I think. That seemed odd and I asked them o send to Mayo. Never did and "No. Ths is good. Means your body is now absorbing vitamins." Then I go home and the next have another dose in the in the infusion center. This nurse got me hoped up and ready to go... I asked if the IVIG started and she said.. I said.. "Ugh, I can tell. First drop goes in, I get a headache." bd she said that fast? One thing led to aother I ended up in anaphylaxis and rejection. So-question- I know this is so basic. My Autoimune illness OR my immune system (not sure which) got very upset with all of these foreign plasmas running around in my blood. So instead of attack the "invaders" it starts to attack me? is that wh is going on? Because it showed compromise of every system: liver, kidney, thyroid, etc, and my blood too. So is that is what is going on or am I way off?
  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 are eating,drinking? Genetic? I saw a friend last week who has the same protein I have, hypergammaglobunemia. I don't know how they decide which autoimmune disease we have from there? Or if there is a way. Anyway, she also goes to Mayo and her disease is attacking her brain- but her cognitive part. She is already considered to have cognitive impairment and beginnings of dementia. She is 36 years old. Mayo told her unless research changes she won't know her family by the time she's 40. By heart shattered in pieces for her. I have not seen her in 6 months, and the changes were dramatic. I'm going to do the bone marrow biopsy if I can find someone to order it (my Mayo neuro won't- when I asked he said his diagnosis is correct and this isn't a witch hunt- you've found your witch... Ugh. Wonder why he gets under my skin at times???? So arrogant. ) and I guess I will go to my family doctor and ask her about the kidneys, iron and biopsy. It's all so complicated but I know IF I did have one of those cancers and found out 3 years from now I would never forgive myself for not checking now. My neuro DID tell me because my IVIG was so disastrous he wants me to take a week to think about what route to go. I know they are all immune therapies and they said they would have 5 options- 1-5 in order of their opinion of the best- 1 being the best. But these are all experimental treatments too. No data to go from really. Thanks for your input, I appreciate it. I DO believe getting my autoimmune issue under control is the most important factor but you are all right and my brain is not going to do it alone. I happen to be such a Type A, high strung, controlling personality- I know the type of mind techniques won't happen overnight either. Thanks again for bringing me back my La-La Land. I am going to be working on all those techniques but working with my dreaded neuro at Mayo. We have a love/hate thing going. Jen
  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, adrenal surges and pain that I get, the worse things get. Sue, I have IgA deficiency and abnormalities in the the other antibodies as well and the serum protein they found is hypergammaglobunemia. My main problem is that I feel ALMOST like Mayo is looking at me with tunnel vision. I am still having significant kidney dysfunction and bladder issues since the rejection of the IVIG. I don't understand why they just want to assume that the IVIG is still causing it and don't to worry about it-let's just wait until once the IVIG wears off.. I will be fine. All other levels have returned to normal, what not those? I found out from a friend of mine who is a pathologist and has been one in 12 years, that almost all people who test positive for that protein are usually given a bone marrow biopsy to rule out cancer because there are many blood cancers that can also be found with that protein and that she has NEVER heard of a doctor not doing a biopsy with a positive test. I have to say- I have a a gut feeling, an instinctual feeling, just a VERY strong feeling that I do not have cancer. I don't know HOW I know this, but I just do. I think that the dx I was given- auto immune autonomic neuropathy is correct. Symptoms all point to that. THAT SAID, my friend Anna (the Pathologist) said there are many blood cancers that will not have symptoms that will not show up for 1-3 years and the only way that one would find out is a bone marrow biopsy along with that positive test of that protein. She is pretty adamant with me that I not overlook this and need to get the biopsy done- JUST to rule it out. I asked her as a pathologist if she has ever seen this protein, and she said yes- ALL 3 times- blood cancer. I know she is worried. Not sure if it is an overreaction due to a friendship or if this is reasonable. Although, she did tell me that she was shocked that it was not ordered because it was standard. There are other illnesses as well that can commonly occur with this protein. That is what I mean about the tunnel vision. Ignoring the kidney issues, or other possible causes, just because they are not related to autonomic neuropathy OR their research study. Which is based on how autoimmune diseases respond to IVIG- and a subset in hypergammaglobunemia. She is afraid they are too worried about their research study that they aren't looking at me as a patient as a whole. I should say that she is actually employed by Mayo. I guess I am afraid of either UNDER-reacting (my original post) or OVER-reacting and requesting tests that are not necessary. I also really trust my friend and she has provided me research that shows that this is a possibility. I am just confused, I guess. But I really would feel better if the neuro dept. would have referred me for other consults if there was a chance of other issues. My kidneys, endocronology, hematology, (never had a full iron study- only know my ferritin now is 6 and hemoglobin is 9. That is all I know. So what would you do? I know you would all go to Mayo.... but would you think these other I have testing? I strongly trust the opinion of those in our forum- you are all compassionate yet honest- and I am sure that I will get answers that are honestly answers tht you would consider if this was your situation. Thanks so much for your help! Now I have to go gag on some crow and tell Rob he was right... Ugh. I HATE doing that!!!! Thank you all so much for reading, caring, and taking the time to give honest opinions. Jen
  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 thought I was dead. It took us some time to convince her I wake up. Unfortunately, they've seen a lot of the really bad head trauma too. The kids do counseling, so does my husband and I do too. But I'm thinking of switching (off topic- but she spends the whole hour asking questions about my "rare" diagnosis' because she fascinated by it so I'm constantly re- directing. 5 sessions so far- we are still discussing medical records and what this and that means) I wish I had an easy answer. It's easy for ME to tell YOU to have a positive attitude. It sounds like maybe your meds are not working out at all. Coming on here may help. Vent away!!!!! I really wish I had a magic wand to fix this for you, for everyone of us, and me. My life has changed so much and I overheard my husband tell someone that he feels like he "lost his wife and doesn't know this person." that was last week and broke my heart. WHO am I then? But you still have purpose, value and worth as a human being, husband and parent. I will pray you find the right protocol to help you improve. I tried a combo of an antidepressant- Paxil because I was needing Serotonin and Adderall because I was needing dopamine- not saying YOU should do this- but for me it improved my mood, anxiety, and concentration/brain fog by about 80%! Good luck- I will be thinking of you and praying for strength and your wife and praying for patience. Jen
  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 anxiety to the fainting and shortness of breath, and constant tests and appts and no answers. Throughout the summer- the worse I got. By late July, I physically could not walk up stairs anymore. Fainting a little more common and LOTS of pre-syncope. Bloodwork was all "normal" except ferritin VERY low (3) and TSH low- .39 I think- but was told yes it's a little hyper but nothing to panic about. I was just curious about it though because it was 2.2 or something in Jan.. 7 months prior. At this point- sitting BP and HR were normal. Echo was normal. EKG- normal. I'd worn a 30 day Holter in April- normal. Was diagnosed with sudden adult asthma. Seemed odd. My respiratory test showed muscular problems breathing but no long or oxygen problems. Never EVER had allergies or asthma... Treated for it- nothing changed. Go to hematologist for iron infusions. He looked at my veins and for the life of me I can't remember WHY- but infusions were not possible, as I'm talking to him, as with all doctors at this time, I'm struggling to talk- so short of breath. Discouraged, I get up to leave and he says- wait! I don't feel right with you leaving. Something is wrong. Listens to my sitting HR... 90- a little high... He has me stand and he sees the color drain from my face, checks my heart- after 30 seconds- 160- has me walk out of the room and back- 210. Okay- obviously, issue. He asks about my heart tests. I tell him all 3 are normal. He checks them anyway- echo- fine. EKG- fine. Holter- he asks how was that? Fine I said. He asked how I knew and I couldn't recall. He tells me "Jen, I'm so sorry- but this test has never been opened, read or interpreted." Nice. This is now end of Aug. Did it in April! So he opens it and both of us can tell without being cardiologists- not right. Crazy tachy- all day every day. Several days over 200! Long story short, end up w/ TTT, DX of POTS but as Sept gets to Nov.. I deteriorate rapidly. Now sitting HR and BP are way abnormal. Fainting multiple times a day- with severe injuries. End up at Mayo in Dec... With a scroll a mile long of different DXs but mainly autoimmune autonomic neuropathy. Had IVIG and was in severe rejection within 2 weeks. Almost every body system affected ( all are now back to normal except bladder and I still have abnormal kidney function- wondering whether to worry or not- been two full months since last IVIG) Now my question- according to Mayo there is no "name" really for my autoimmune disease- they know I tested positive for this serum protein which means I have one- and they know my form, for whatever reason is SUPER aggressive. No meds, no treatments, nothing has helped. In fact I'm worse now than ever. I believe that this autoimmune disease (which I know so little about and am trying to learn) is just attacking my body with a vengeance. My adrenal surges have been horrific- my legs are violently twitching all over the bed, as are my arms, yet I'm "paralyzed"- yet I feel these hormones surging through. Anxiety and pain are OUT of control. I have chronic herpes all over my face. Not just my mouth- in my nose, all around my mouth and nose. What if I devote as much time as possible to learn how to control my stress, pain, surges, anxiety, panic? Will that help calm my Autoimune Disease down? Is it reacting to all of that and just getting worse? I'm thinking deep breathing, meditation, acupuncture, massage, anything and everything I can do for myself without introducing more drugs into my system? Am I way off base that this will affect my aggressive Autoimune disease at all? I know none of it would HURT me and would only help- but could it help put my Autoimune Disease in remission? Then, if so, I could start focusing on re- training my autonomic system eventually... I'm asking now because I go back to Mayo Wed. And I KNOW they have another immune therapy they want to try. Is my idea just insane as far as "cure' but great for coping? I guess as out of control as its been and with a bladder and kidneys that still haven't recovered- I'm torn. I know it's my choice ultimately, but my husband looked at me like I had gone CRAZY when I mentioned my plan and how I thought it might ease the stress on my Autoimune issues. He says: "No way- we should listen to Mayo." I know I probably am a loon but I thought I'd toss it out there for an opinion. Nothing else has worked, in fact like I said I'm worse now than ever and down 55 pounds. I want to get better. Thanks! And believe me- no offense taken if you say: "Yeah- you are a loon, crazy, batty, whatever".... It was just a thought I had and like I said, I'm still learning, or trying, to navigate in order to learn about Autoimune issues. It's all so complicated!!!! Thanks!!!!! Jen
  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, this is GROSS, and WAY TMI) has gotten horrible. Each month is worse than the next. And the week before my period I am always miserable, goes without saying the week OF my period I am so WEAK... (Again... SORRY... WAY TMI.... but I have a 7-8 day cycle and at least 6 of those days it is so bad I have to use 2 heavy duty pads AND a tampon. Yes, this goes along just FABULOUS with my periodic incontinence or retention due to my bladder not working right... ) and the week after is just as bad. You would think that would mean I would have one good week... but somehow it never works that way I don't want to take birth control pills or anything like that, but I was wondering if I should consider stopping my period just because they are so severe. But definitely don't want surgery or anything.... Interested to hear the replies. Thanks! Jen
  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 especially have had to "adapt" to. A bedridden mom should not be the normal for them. The fainting has become a lot less... but mostly because I am hardly ever out of bed. I crawl around a lot and I still faint while crawling but it is pretty rare that I injure myself seriously. Bruises and bumps, but nothing serious. Jen
  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 someone there) every day- and leg exercises and resistance bands for my arms- in bed- every day 2x a day. I don't feel I'm losing strength...
  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 poor 11 year old found me in our bathroom in a pool of blood- I was bleeding to death. Luckily he did not panic and saved my life (I've got a smart boy but I'm always just heartbroken when I think of what that was like for him or if it haunts him. I was admitted after that one and I stayed in the hospital for almost 2 months- not just because of the head injury- they transferred me to Mayo and I began all of that testing. But EVEN at Mayo- they told me NO walking for a long time. I know that conserving my noodle is of utmost priority. I did have one more pretty bad concussion but that came from sitting (kind of embarrassing but. Was trying to pee and suffer from bad urinary retention and I must have sat there too long because I woke up on the floor with a bump on my forehead the size of a grapefruit and 3 gashes. Looks like I hit the sink, bounced and hit the tank of the toilet, then the floor. That was the worst concussion because it totally changed my personality. I was a raving lunatic for 2 weeks and aggressive but didn't realize it. My doctors have the same rule for me- NO X-rays or CTs unless it's a life threatening situation- I've had so many. I guess frontal lobe concussions like that one cause different types of reactions. Oddly, I didn't see any of it do that only made me more angry. That was the beginning of Feb. and have not had a oncusdion since that I know of, but I knocked my head or banged it pretty hard so ho knows? At this point it doesn't take much. Sometimes it's hard though to differentiate between post concussion cognitive dysfunction or autonomic neuropathy/POTS cognitive dysfunction. Or if there even IS a difference. I just know I can't bang my head anymore. I worry a LOT about what I will be like as I age (IF I get lucky enough to age). The studies so far are not super encouraging! Thank you Issie!!! I'm glad you don't faint and I feel your hugs from here! And Kayjay- I usually fall back for some reason but once in my teens fell forward and broke my nose!!!! Ouch! And it healed awful. And you're right, Tautologist- it is almost impossible and I don't even know that they CAN. The last time concussion was so strange- usually I faint very quickly after standing... But the last time because I'd been sitting so long I do remember my ears starting to ring- a warning sign, and I looked at my legs and it looked like every drop of blood in my body had pooled down there- next thing I know I'm waking up off the floor. I had 3 gashes, but no bleeding. Two "black" eyes but they were this odd green color and the whole rest of my face was YELLOW yellow. Like I had jaundice, I guess because I had no blood in my face at all when I fell, the bruising was different. It was really strange. I had to get stitches for these non-bleeding gashes because they were deep and future scarring- but my BP stayed so low they never bled. Jen
  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 would get seriously injured because I am close to the ground. SO... my question for my fellow fainters, how often do you get injured and how serious are the injuries? It seems like I have had some pretty severe injuries from my spells. I have had 9 documented concussions and I am sure the true number is much higher. I have had 4 occasions where I have fallen and had such a serious "head injury" that I actually knocked myself out, in addition to the syncope (I guess there is a difference). All 4 of these epiosodes have included pretty serious open wounds in my head. One on the forehead, one right above my temple, and 2 that have split the back of my skull open. I have been told my every neurologist that I have seen the #1 priority at this point is to avoid ANY head trauma for the next year preferably ( well, perferably forever I am sure) but I guess the next year is crucial. So I wear my helmet whenever I am even crawling. All of my neurologists have warned me that howthe helmet will not necessarily prevent a concussion because because I am so prone. My insurance wlll not cover the helmet that the doctors want me to get but it is $$$PRICEY$$$$ It is almost like what some of the helmets a few of the NFL players wear who have had concussions. I had my first round of cognitive testing last week and was pretty discouraged at the amount of cognitive problems I am already experiencing: Retention issues, short term memory, speech problems (I guess I speak haltingly because I have a problem with finding the right word), lots of word recall issues, almost constant double vision, headaches ALL the time. I do have Post Concussion Syndrome- and always will- but again- I have been told by everyone that even if I have to spend a year in bed for a year- preventing another head trauma is absolutely crucial at this point. So... my fellow fainters have these types of issues as well? I've never actually SEEN anyone faint, believe it or not. I know some people maybe are more graceful when they fall. I am not at all graceful. I tend to always fall straight backward and because the head is heavy- It seems that 80-90% of the time I hit my head. Some people just crumble and don't really hurt themselves. Because I am not awake, It doesn't seem like I can control it. I guess my question is this: Am I the exception or the rule? Do most of you who ave syncope- do you injure yourselves? Or are you one of the graceful fainters who just kind of crumple and maybe get some bruising but not serious injuries? I guess I am just wondering if I am an exception because I have had neurologists tell me that it is unusual for somone with autonomic neuropathy w/ syncope to have so many serious injuries... or do most of us who have syncope have a lot of the same sort of injuries... lots of concussions and loss of cognitive function to that level. I don't know if this even makes a difference but I guess I am just curious. Thank you! Jen
  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 responds well to Midodrine. I have heard so many horror stories. My side effects are pretty typical... I am FREEZING... goose bumps, shivering... so I am constantly bundled up- but I tend to run a low temp typically anway (usually between 95-96). Oh, I should say my dosage is 15mg 3x a day. I notice a small change in personality- meaning I am a little bit more talkative and upbeat maybe is the word??? When it wears off, I notice a small change in personality and if it is my last dose of the day when I am not taking another dose I have a mild withdrawl feeling but it is pretty slight that I don't know if I would have even noticed it had I not read about it on the side effects. I honestly wouldn't even be able to sit upright without it, so I have to take it no matter what- but I think I am VERY LUCKY that my side effects are so minor- especially when it seems like my dose is higher than a lot of people take. When I wake up in the morning- pre-drugs- my lying down blood pressure is usually in the 70/50 or lower. It has never worked well enough to allow me to stand yet... but even being able to sit up from time to time is a victory so I take it. I also have the option given to me by my doctor to take a 4th dose before bed- which usually is a no-no- because it causes hypertension while supine. But, I am "supine" most of the day and hypertension is not a worry for me- but I don't know why, I just choose not to take that 4th dose. I am hopeful that SOON I will start to improve and not be bedridden the rest of my life, so I am curious how I will react to it when I am able to walk around. That could change everything. But for now, I will keep taking and put up with the side effects. My doctor is talking about moving me up to 20mg 3-4x a day next month but I am not sure about that. I think staying at 15mg is enough. I guess I will listen ti his argument before I make up my mind... Good luck and feel free to ask any questions you have!!!!! Jen
  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 everything I am NOT doing for them that I should be... not to mention the truama they have been exposed to and sadly, become "used" to. I welcome you to our forum, though. You will find so much support here and it will improve your life to interact with others who may have experienced symptoms or conditions very much like yours. I know I have felt much less alone after finding the forum. I will tell you what everyone always tells me... you have nothing to feel guilty about. You did not bring this on youself and you are sick. You need compassion, from those around you, and so very difficult for me, but from yourself. I am sorry you are struggling. To answer your question, as my living conditions are different, I don't rely on friends, but primarily on my husband at this point. Yes, I do feel at times that I am being selfish and like I said, a day doesn't go by that I don't feel guilt about it. But I also realize it is a wasted emotion. There is nothing I can do about my situation right now- so when I find myself focusing on guilt I change it to gratitude and make sure I express my gratitude to him and my children daily for all that they do and have sacrificed because of me. I have realized that the more I focus on being thankful, and grateful for everything positive I have in my life, the less I focus on the guilt. Jen
  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 (when I hit my head and there is blood, that's always a different story but we've made a lot of adjustments and that has not happened in some time, but my time standing is so limited before syncope that I just can't risk any more head injuries- and I'm so sick now- I'm in bed or crawling). I struggle with the fact that this has become "normal" life for my kids. These aren't things they should have to worry about Jen
  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 Type A personality and would have never imagined living like this. I wasn't sure how I could possibly be confined to bed and stay sane. I'm working on my Masters and that's always kept me busy- but even though it about killed me, I had to make the decision to take this semester off. Due to so much syncope, I've had 9+ concussions and have suffered quite a bit of cognitive dysfunction. I really needed to let my brain and body heal, but it left a gap. I'm always amazed, but somehow, I keep myself busy everyday and try to be as positive as I can.. But sometimes for sure I feel I will snap because I want my life back so badly. I feel as if I'm letting my family down because as I lie in bed, they are living their lives and I'm missing a lot. It is good news you were approved for SSDI so quickly. I'm not sure if you said where you live, but in my state (WI) there is a program called Wisconsin Cares- and they provide assistance with medical care, child care, home therapies, housecleaning, transportation, nursing, etc. If you are eligible for SSDI then you qualify for this I believe. I'm still waiting to hear about my SSDI application but I am getting Long Term Disability thru my employer. Hang in there. I know what you mean- you try to stay positive but sometimes it is hard to keep a sunny disposition when hours turn into days, days to weeks, weeks to months etc... Without any answers or improvement. I think that your activism and trying to raise awareness is HUGELY productive and you are helping SO many people... That is wonderful!!!!! Jen
  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 and I say it to myself several times a day as I get frustrated- and often will ask myself.. Can I change this or not? If I can't, let it go. If I can- get started. But many of you are so at peace and function with such purpose... Well.. Let's just say I have a LONG way to go! But those of you who have mentality have my admiration... Jen
  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 inspirations. I have about 12 different ones so I try to read those daily as well. Bunny- its interesting you brought up finding comfort in simple pleasures like the softness of a blanket, etc. I never used to pay much attention to such things as much, but I've noticed now that the feel and texture of things now matter a great deal to me. Blankets, towels, sheets, clothing, etc... I notice that I also get comfort from those simple pleasures and now I am very picky about fabric. Maybe before I was never still long enough to notice??? I am not sure, but I also appreciate those things and it does make me feel better. One thing I do to cheer myself up every day is my journal writing. I have 3 Gratitude Journals. One for general gratitude which I've one forever. One for Rob (my husband- we have been going through a difficult patch lately with both of us adjusting to the severity of my illness and I tended to be so Type A and controlling that I knew it would destroy both of us if I didn't stop complaining about how everything he I'd wasn't how I'd do it- so I started keeping a journal daily about things he's done that I'm grateful for bad it impacted my attitude a lot when I really look at everything he does) and lastly is my "Challenge" journal nd that is dedicated to the illnesses I have. I try to keep it positive and think of something every day that having this disease has taught me, brought into my life, changed a perspective whatever. Every day I make myself think of 3 things positive, if I'm not feeling so positive I can vent in there too but not until I make myself think of the 3 positive things. Lastly, I have an individual journal for all 6 kids. Once a week I write in their journals and describe their week to them. Things they did, funny or sassy things they may have said, accomplishments, punishments, the good and the not so good. I just have a conversation with them about their week. I plan to give these to each of them when they graduate high school. The ones I have now I've been doing or 5 years, when my current hubby and I married and I started one for my new kids ("his" kids but they are mine in my heart). Way off topic, but I had been doing ths since my oldest daughter, now almost 16, was born.. I have 4 bio kids and they each had journals but after I divorced my EX he decided it would really hurt me to destroy all of the journals and the kids pictures and scrapbooks. Sigh.. It did hurt me and it hurt his kids, but I strongly feel such an act hurt HIM more than anyone else because of the hate and bitterness it took to do such a thing. But I digress, I started over and journaling is a great comfort to me. I love to log history... Jen
  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 15 min. I had that feeling of dread and I could feel the adrenaline. I guess I am assuming it was an adrenal surge, although it was the worst one I'd ever had. It was so bad and I could do nothing but lie still. Couldn't even move other than the involuntary movements. Nightmare!!! Interestingly, a 72 hour period of not sleeping followed... I believe our new member Sleephunter mentioned something like this (Wekcome to our forum, Sleephunter!!!! I hope you find it useful). I have be NEVER gone that long without sleep but it was crazy. I don't know if I had so much adrenaline being produced or what happened but it was crazy. I wasn't even TIRED. Even when I finally did sleep- I still didn't feel tired... It's a long story but we lost our kitty cat about 4 months ago and I just miss her terribly, and I hallucinated her and she came and crawled up next to me and fell asleep and I did instantly after that. The last night with no sleep I did have hallucinations the whole night and it was CRAZY. I remember every bit of it, first I started hearing things and eventually seeing things- like bats in my living room, hundreds of them... Ugh. I did some VERY insane things and lucky I didn't kill myself! I sure hope it never happens again. As usual, I rambled (sorry) but I do get that "Doom" feeling and I think it must be hormonally or chemically related somehow. Jen
  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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