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Posts posted by jenglynn

  1. I know this has been discussed... But just a few questions. For those of you who DON'T drive, is that self imposed restriction or by doctors reporting to DMV. What kinds of symptoms keep you from driving? Is there anyone who has had their driving privileges legally removed due to this illness?

    I personally have not driven since Oct. 2011 when my syncope began to escalate. Now that I think about it, I waited too long. At that point, my syncope was completely positional. I would stand up and faint so my doctor was comfortable letting me drive. Well, since Nov. when my illness progressed seriously and I was having numerous syncopal episodes a day- I had 3 concussions that month. The last one gave me a cracked skull and quite a stay in the hospital. When released- two instructions- no driving, and no WALKING. Well, still waiting but have not got to the point I can stand 30 seconds or more without BP bottoming out and fainting. So, I'm still on doctor ordered bed rest but I can go places in a wheelchair. That said, I still faint crawling and in sitting positions at times. I had a fainting spell in public (grrrrrr) and witnesses said I had a seizure. EEG did not show seizure but the MRI showed something abnormal with my brain.. But NO ONE knows. My chiropractor thinks he does but my medical doctors say its impossible.

    Anyway- my point- obviously I'm no where near driving now but if we have no legal restrictions then we use our best judgement? Or is frequent syncope like seizures and you lose your license????

    I know, out of bed and walking first.... Lots of recovery... But the thought of never driving again is pretty dreary.... Just to be clear, though, I'd never drive if I was currently fainting or felt it was not safe.

    Your thoughts?


  2. Katy & Bren,

    I have peripheral neuropathy and that is always how I describe my pain. Like my body is completely bruised- but they aren't there. Well, that's not true, with my syncope I'm always covered in bruises :) but not always matching up. I used to tell my parents I had a sunburn and they'd look at me and so.... Ummm... No.... And I'd say "No! On the inside." It is not always that way though... Sometimes the burning, sometimes the bruised and achy feeling, it could be anything,

    I was first diagnosed with fibromyalgia and it's still technically on my records but it never seemed right to me either.

    Gotta say, one of my LEAST favorite of m illnesses.... :)


  3. Jangle,

    I am sorry you have this decision to make. I did try IVIG and Predisone. Unfortunately, I didn't do well on both. I was allergic to both... The Predisone just made swell up like a balloon, hives, itchy, but nothing too terrible. IVIG, on the other hand, was disastrous for me but that was partly my fault. I had many signs of having an allergic reaction- but thought it was just normal reactions. I also had hives and itching but my doctor told me that I was having reaction to another med I begain.

    The next week I went into an infusion center (outpatient) to get my infusion. All of my previous ones were done inpatient. I told the nurse about the symptoms I have and she felt unfomfortable right away and said those effects are POSSIBLE side effects but you shouldn't necessarily have them all. So we were going really slow with the rate... I asked her right away "Did you start the IVIG?" And she she said she just did... and I immediately had a headache and started itching... she turned it down lower. Within 5 min, I think???? Hard to remember... but I had complete anaphylactic reaction... So I went to the allergist and he was very against using IVIG for our condition. This was all done at my local hospital, not Mayo. My Mayo doctor was contacted and he wanted to try another brand and I said I was going to think about it. But my local doctor said they would not do it at their facility (liability). He sent me for some blood work and I got a call on my cell phone within an hours- I was in full rejection. So obviously that wasn't going to work. My autoimmune disorder was so agressive and had just taken over. Believe it or not... I am STILL trying to get it out of my boy. Everyone told me it would be gone within 6 weeks. I would never get fevers and when I would get sick to try to get rid of it and get it out of my body... yeah... mine is still in here..... July. I had the infusion in Dec/Jan. I will always know because I wake up with a face FULL of cold sores- lips, chin, up around my nose... no warning. I will be sick all day. Throwing up, feeling as if I have a horrible case of the flu. BUT for the first time I had a fever. NEVER have had one. It was 102... which for ME is very high because my base is 96-97, but each time since NO cold sore and has been less severe and I can literally live it leaving my body. SO YAY!!!

    It would be so nice to really feel like I have my body back again.... even if I am not totally healthy..... it know this sounds silly... but I can FEEL it in me. I am sure it may just be "in my head" but I really did feel it there and now I feel it leaving. The doctors were sure that I have autoimmune mediated autonomic dysfunction neuropathy but unfortunately these two treatments actually made me worse rather than better. I will get better, I know it. I truly feel this and I don't know if there is a medication stronger than that.


  4. Thanks Issie! I did download her book and have read most of it and it really seems to be me to a "T" But of course, I can't find anyone around that will even LISTEN to me. I have had 5 MRIs of the neck for whatever reason in 5 years and it is on every report getting worse every time... more fluid and more of a curve. When I questioned this... Oh, it isn't a big deal. Maybe I will email/call her. Did not know that was an option. You should be my neck... the gap between by C1 and C2 is just this gaping hole. And I have never had back pain but it is only when people get a severe form I guess when the pressure is on the ANS that it escalates in exactly the manner mine has. THAT is the first explanation I have got to make sense.... so I may as well pursue it!


  5. I have autoimmune POTS (autonomic nueropathy too), EDS and a few other illnesses. They all different symptoms that seem to relate to everything except one. So I just keep told that they don't know to treat me. My neuro called me last week and told me he could not see me anymore because of liability because he has no other ideas- and just because they found some kind of curve in my neck that they think I was born with (or result of a birth injury- forceps) and a large pool of still fluid just putting pressure on my brain. I had an MRI in 2007 of my neck and it showed the reverse curve and the fluid but now 5 years later it has more than doubled.

    I think this could be making my POTS worse possibly, headaches, with EDS etc, but they said NO... they don't treat curves and it is fine. So I can call him for my meds but that is it.. he won't see me in office. Great.

    My point which as usual I lost track of, if that there are so many symptoms it is hard to put the puzzle together. All kinds of POTS is lumped into one category is an issue I think as well. Someday maybe....


  6. Oh McBlonde... I'm sorry. It's terrible when you "might" find a beneficial drug but doesn't work out :( I take 20mg of Midodrine 3x a day and Adderall. Amazing how our our bodies are so different. I'm actually diagnosed with auto immune autonomic dysfunction neuropathy.. That could be a difference? Who knows? No one understands this stuff ;)

  7. Wow- what a blessing for you, Charmed Liz. I'd already been approved by my company's long term dis. Plan, in a wheelchair (rarely) because I've been mostly bed -ridden since Oct-Nov., multiple daily syncopal episode and 12 concussions from the literal hundreds of fainting. It's been a long story, but my case has been pretty severe so it seemed outlandish I wouldn't get approved... But you never know.

    I'm just keeping thoughts and prayers with those of you who really need an approval, medically & financially.


  8. My experience was that doctors are extremely hesitant to prescribe it. It's addictive, controlled substance. It's an amphetamine. However if you NEED it because your body needs the dopamine then you don't that hyper response.

    McBlonde, MANY have a crash. That's one of the biggest problems. Did you take Extended Release or the short term? XR would be capsules. Short term a tablet. My son, 11, takes 15 mg XR. We also have a short term 15 mg dose if he needs it for a crash. However, after the first 3-5 months the crashes stopped. So he keeps with 15 mg a day. I take 30 mg XR in the morning and I think 20 mg short term mid-afternoon. It does mess with your appetite so prepare to lose weight. Some people don't but my son and I both did. Hard to tell with me because of POTS. My son started in April and June had lost 17 lbs. Perspective: he was 82 lbs down to 65. Big drop for a growing boy. The meds have such an amazing effect on him mentally but we were to the point physically where he may have to stop taking it. Well, right abound that 3-5 month timeframe he stabilized. Weight goes up & down only 3-4 pounds. All 4 quarters he was straight A's. Did not change his personality one bit. The psychiatrist said if it changes you- you don't have a dopamine problem. That simple.

    So, yes crashes are very normal. Everyone will experience it in a different way. All I can say is that of every med I've tried to deal with this condition the Adderall has by far been the most beneficial.


  9. Hi Everyone,

    I am sitting in here... a little bit in shock. I was actually APPROVED on the first time for SSI. I just can't believe it. I realize that I am not at all happy with the fact that I am considered "disabled" but it will be a financial help. But I am humble that I was approved on the first time and I don't have to go through what so many of you do. I hope it is just a matter of time until they change the requirements and Dysautonomia is added to their list of accepted condtions. I guess my approval is a little bittersweet because I know there are so many of you suffering as equally as I am.


  10. Sugar,

    I was diagnosed with this in Dec/Jan and I am in the same boat. I cannot find any two doctors from anywhere to give me the same answer. It is so confusing. I spoke with a pathologist a couple months ago and she said that our condition is just a guessing game in the medicial community. She has gone to different conferences about autoimmune or autonomic conditions and without being told that new information has been found- every time there is a complete conflict about several things than the last time. Like Issie, I have low antibodies but mine are IgA and mine is called hypergammaglobulinemia. When I look these things up online I find different possibillities... yet no doctor will listen when I asked to be tested. I have EDS but have been told that it is not related. Yet, my symptoms have failed to improve at all. I have had a couple good days, but I have a list of symptoms that are progressing.

    Then I went to a chiropractor who is supposedly a specialist in autonomics. People come from all the world and country to see him. He said my Xrays he has ever seen. My neck has something called reversal of normal cervical lordosis which means my neck has a very bad backward curve meaning it is putting pressure on my nervous system. The spinal fluid isn't flowing through which I could clearly see on the xray and MRI- its just a pool. Well.. this fluids just puts additional pressure on my brain. And this is what the chiropractor says explains the severity and progression of my issues. He actually called me at home and asked me to meet him at his office the next day early in the morning (his last vacation day) because he was watching an interview on the local news that I was in- he could tell by my posture according to him.

    It IS so confusing. I have called other nerologists and asked them about that theory (ones I've seen) and they say is it "crazy" to put it nicely. Yet they haven't given me anything other than IVIG which my body rejected and violently so and almost killed me. At some point we just wonder what to do?????? All I know is I am getting worse. I did see another chiro- just for xrays to see what he said- He did have the exact same diagnosis as the first one. They both told me with the pressure on my brain is causing the problems and mine is so bad that I had less than 4-6 months to live. I can't even process that because I can't even process if THEY know what they are talking about.

    I am just so frustrated, like all of you. CLEAR answers. It just makes me feel as if there is no one to trust and WHY I should listen to. I have an appt. with Dr Chelimsky in Sept... I guess at this point, I feel as if he is a viable source to listen to.

    I am so sorry I am not the only one who is going through this struggle. It breaks my heart.


  11. I've been bedridden with this since Nov. 2011. I am STILL there.. This flare began in April of 2011 but my fainting increased so drastically in Sept-.n- Oct. I'd go from 100/75 65 HR to 30/10 180+ HR Many times they couldn't get a pressure at all. This would happen so quickly it seemed I has no time before there my blood to my veins. I also have very open, stretchy veins due to EDS.

    I was put on bed rest on Nov. because in 3 weeks I had 4 concussions (had a total of 12). I was hospitaliized from late Nov. - NewvYears, I don't always stay in Bec, I crawl around to the restroom, to take a bath and use the restroom. I will cawl around my room too if I need something. But for the most part I'm in bed. I check my vitals twice a day and for the most part- not a thing has changed, so we obviously need a new plan!!!! Good luck!


    My main reason for not pushing myself are the multiple head injuries and concussions. Right now I'm till still not cognitively impaired but I have lost up to 30% of my function- word retention and memory. It is VERY noticeable to me even though most people say: "Oh! I can't even tell." lol. What are they supposed to sat? It's bad enough my family has had to deal with every day- I can't imagine some of the horror stories I hear about after long term concussion effects.

  12. Hi Tom,

    I'm having a hard time answering.... I'd always had fainting,dizziness, tachy and low BP since I can remember but no one ever made a bid deal about. My family doctors that I saw over the years always said the same thing "Some people just faint when they stand" because it was always changing position. But I was never diagnosed and those spells were rare (1x every2-3 months).

    In Aprii of 2011 this flare began suddenly and has just gotten progressively worse. In fact no one can even figure out how to treat me. It has a frustrating year+ that's for sure.

    Good luck and I hope you find the right doctor quickly and get the help you need ASAP!


  13. Wow... Timing here is always perfect... I just found out I have moderate to severe scoliosis and my neck is curved in the opposite direction it's supposed to be. It's pretty scary. I've seen two chiropractors now- dont know each other- and they both said the curve is putting direct pressure on my brainstem on ANS, and my whole cervical spine is full of the same fluid applying so much pressure that a lot of symptoms have changed. My legs will get tingly and numb and for about 45min-1hr I can't move waist down. When I have syncope, now I'm having seizures with incontinence.

    I have gotten a second opinion and both were pretty dire. Both said they could make me functional. When I called the neuro with the findings he laughed at me, and said if I was going to seek out these quacks we may as well go ton a psychic. I think it's called reversal of the lordotic curve. Most curve one way and mine exact opposite. If you were me, would you trust chiros for this kind of treatment or try to find an MD who will listen. sigh..... I have been going downhill so fast it's scaring me. I need help now,



  14. Oh Bren- I hear you. It seems as if I spend half my life angry and the half apologizing!!!!! You'd think people close to me would get it would get it. I wasn't like this before. It's a cyclical behavior. I'm an emotional basket case. And I feel ganged up on when people get together to discuss "JEN". Do you think this is helping??? I feel worse than anyone. I don't even know that raging woman and I guarantee no one dislikes her more than I do!!!

    Thanks for all your replies on a very difficult subject!


  15. I'm still waiting for my Round 1 denial. Even though I can't stand 30 seconds without fainting I'm sure some job will be appropriate :) How long does it take to find out? does anyone know? I applied in Nov, toward the beginning, so it has been 7 months. Do they have a timeframe? I just want to get phase over with one over with so I can move on !!! It was hard enough to actually apply.

    For all of you denied- be patient and for those of us waiting- positive thoughts maybe???? Lol


  16. Midtra, I woke up right as she was poking me. I asked her what that was and when she told me I told her I was getting IVIG infusions and am not supposed to get any vaccines. She got snippy and said that did not include the flu vaccine. I had JUST read the exact opposite the night before. I told her that my info I'd not match up and she needed to find the DR (neuro) who ordered my infusions.

    He also promised when I was asking questions about getting IVIG, which I knew nothing about, that I need not worry- "this is a benign procedure with no known risks." Really. USUALLY you sign and are given possible risks for vaccines. The IV itself "could" theoretically pose a risk? He got annoyed and said the risk for ANY complications is less than 99%.

    In my case I also was IgA antibidy deficient and the IVIG product they gave me has a relatively high rate of complications. But I didn't find out (my own fault, I guess, I should have studied up more. The only 2 excuses I have is that it all happened so fast... And I was so sick. My organs were shutting down. We couldn't even my BP above 60/40 HR 145+ lying down! 4 treatments into IVIG I had an anaphylactic reaction with my nurse right there thankfully- and when we ran labs it showed I was already in complete rejection. Every body system was affected. Everything is pretty much back to normal now except my kidneys are at the same level a depending on the day they show 35-55% damage. The month of Jan-Feb was just miserable. So sick as my body tried to get it all out. For the most part it is but every 4-6 weeks I will get so sick and I know my body is still working to get the rest out of any cells. I can always tell because every time I had a treatment of IVIG I had an odd taste in my mouth and I will get a horrible outbreak of cold sores. This happens again whenever these spells occur. I will get one or two occasionally but never like this. Usually I would feel it coming a couple days prior and just 1 or 2. With these I wake up with about 20-30 or more all over my mouth, chin and nose. And they are already full blisters. My neuro denies I could have left- well explain why it's in my kidneys and I still have it there? Of course no wrong doing. So I am not sure if it was the flu shot, wrong kind of IVIG or just an "unlucky coincidence" as the neuro puts it. Yeah, I seemed to have my share of those there!

    I went to an allergist at my local hospital and he said I was so lucky to be alive, especially after 4 treatments. He said they aren't approved (IVIG) for my specific illness and I had more than a 90% chance oftat happening. I guess that's one of the big problems with these illnesses. You never know who to trust and because there are not any "cures" you're always taking a chance. The allergist could not say if the flu vacinne or the antobidy mistake or a combo of both or neither caused the rejection



  17. Wow... I am very sad that any of you go through this. In my case, and it sounds like many of yours, it can change from anger to rage very quickly. It is so out of character for me. Before I had this flare, I've never had anything like this occur. I was quite young when my POTS/ Autonomic Dysfunction Neuropathy began but this has been the most terrible by far- no comparison. I have always wondered if it was from my concussions or more hormones.

    I had been thinking that the effects of so many concussions might take longer than a year, give or take, to manifest.

    Monstrosity, Mine seem to build up, reach a peak and then slowly go back down. That process takes about 2-3 weeks on average. Kayjay and Dani I had always been extremely mild mannered, go with the flow people pleaser. Over the last year, it seems as if there is this discontent that is just always "there". Not anger or rage always, but not right. Definitely stuck in bed 90% of the time. I vowed I wasn't going to feel for myself and be pitiful and whiny all the time. Not sure which is worse "Poor Me" or crabby. I try so hard to stay even but I bant always manage it, especially when I haven't had a treatment yet that has improved me in the slightest, only made me worse. Now that it's getting nice out, I was to be THERE...

    Like Kim I do notice a personality change as well. I'm WAY more assertive than I used to be. Now I want my opinion expressed. When I'm not in my rage mode, It is fine.. Just so different. It seems every time I get together with family/friends, a huge "intervention" seems to develop; you don't seem your normal self, you seem st stress, you were pretty harsh with Uncle Harry. I've explained it time and time again.

    I really do feel for my kids though o I make that we talk about these changes, but as much as I'd like to say they are, they aren't exempt from them- we have 6 kids from 9 yrs old to my oldest almost 16. I don't know how you girls/guys handle with little ones or babies. You must be exhausted. My husband gets the absolute worst of it though. Has it changed by of your relationships? Of course any chronic marriage will change a marriage- but the rage is a whole dynamic. Thanks Kaytbug- I'm going to check out your link right now!!!

    Okay- today let's all count to 10, breathe deeply, and imagine our Happy Place.... Maybe I just need to work harder but I have a harder time breathing when I think about and hem I'm annoyed that I can't go to my Happy Place....


  18. Hi Everyone,

    This doesn't happen ALL the time, I think there must be a routine for it, but I can't pinpoint it. But I will have these spells where I will have uncontrollable, scary, and emotional bouts of rage and anger. I turn into this person that I hardly recognize. I yell and scream at my husband. I swear and cannot help myself from using any profanity I can think of. I throw things. I have to be physical but of course that is of course a concern with the amount of anger.


    It seems to occur after a bump after the head. I have had it a few times occur without any head trauma or concussions. Just out of the blue, I will have these fits. I try to stay to myself as much as I can but if someone upsets me even slightly I will lose control in a way that I am almost watching myself from above in horror and thinking: "WHO is this crazy, psychotic woman????"

    I would say they occur once every 3-4 months. They can last from up to a week.... but usually 4 or 5 days. Just got over my last one about 2 days occur. They are threatening my marriage and my husband thinks that they are within my control, and maybe they are, but it doesn't feel that way at the time. It feels as if it is completely out of my control. It is so unlike my normal personality, which is not that way at all. I will admit that I am controlling to a point describing myself as a Type A personality. I have never been mean and hateful, though. Loving and caring but with just the urge to push a bit. But to be angry, yelling and hateful? NEVER. Has anyone ever had these surges of anger and rage? I can just FEEL the anger boiling... they ALWAYS occur at night. I can feel the hormones surge. Not sure if it has to do with excessive concussions,

    POTS, or depression, or WHO KNOWS????? It if very humiliating to admit this here. No one knows about it except my family and mainly just my husband. Thank you so much.


  19. Just for purely stubborn reasons, I never get the flu shot. Once, about 9 years ago, I got the shot, and had the worst case of the flu. So I swore I wouldn't. It is practically impossible NOT to anymore :) I had already been diagnosed with Autonomic Dysfunction Neuropathy while I was inpatient at a hospital in Dec. and had started IVIG treatments and while I was sleeping one of the nurses came and gave me one. It was written in my chart in error I needed the shot, as you are not supposed have the shot while on IVIG. I did get pretty sick. I reacted to the IVIG pretty much right away but it seemed to be just typical reactions. I had a headache, I was achy, flu like symptoms... I also had hives but my neurologist had also given me a new med that day and he said the hives were from the new med. During my 4th treatment I had an anaplylactic reaction to IVIG and when I went to get bloodwork done to see if any damage had been done- we realized my body was in rejection of the entire treatment and I was very sick. I was never sure if getting that flu shot had anything to do with it.... We will never know I guess.


  20. Blue- ,

    Yes... I have very severe syncope and had concussion 12 or 13 last week- even crawling. I have been bed ridden or crawling to & from the restroom SINCE Nov!!!!!!! I'm about done. I have pretty severe Othostaic Hypotension - I oke this morning feeling "okay" and it was 48/32. My body is an absolute nutcase :)

    I will usually have 2-2.5 days with no sleep- sleep that night - and wake up feeling fine. And I'm rarely sleepy during those days. But o the other hand, I can get more than nough slep for a week in a row and be tired?!?!?!?!?


  21. OMG... I have to of ALL the drug I've my Adderall has given me the most positive results. It doesn't "cure" my autonomic issues of course, just makes it easier to focusing concentrate and clear out the cobwebs. I take 30mg ER 2x a day ( I think). Interestingly, it never keeps me awake, doesn't make me jumpy or "wired" (although the first day or two I was on it my hubby said I did NOT stop talking). With all of my concussions, the brain grogginess and inability think straight was driving me crazy.

    My endo said that I had a slight shortage of serotonin and a larger shortage of Dopamine. My general dr. Prescribes everything for me and is by no means an expert. Ritalin, Adderall, etc. are suggested as possible treatments so she said ket's give it a try!!!! Wow! Huge world if difference, my mood changed. I could focus in something, my brain was not a jumbled mess. I was never DX'ed with ADHD but my 11 year old has it (not uncommon to run in families w/ autonomic issues).

    I guess the hardest part would be finding a doctor to prescribe it without an ADD/ADHD but obviously they are there. I would gather as much info just give it a try. On the plus for, it raises my BP, on the minus it Killed whatever was left of my appetite. The key as to whether it's working us to just judge your behavior. It should not change suddenly other than the typical side effects. That's how you know if it works. I'm so glad I tried it because it has been the only med to really help me- other than Midodrine, which is small effect.


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