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jenglynn

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Posts posted by jenglynn

  1. Hi Everyone,

    It seems as if I never have ANYTHING positive to share when it has to do with my poor body. After a year of this awful flare, and bed-ridden since November, I usually feel the same way everyday. My blood pressure is always low, tachy all day, all the bells and whistles, right? I have autonomic dysfunction neuropathy (autoimmune), EDS and P.O.T.S and a slew of other things as well.

    WELL... Monday and Tuesday nights I did not sleep at all. So I think I was awake for 50 or more hours without sleep. This is not unusual for me and the oddest thing about it, is that I will be awake most of this time without feeling all that tired. Eventually, I will crash but it is usually for only about 6 hours.... then I am awake again sometimes for another full day- then I sleep a long time. Thursday I slept ALL day. Woke up last night at about 7:30pm and thought OH WONDERFUL, another night of being up... but by midnight I was exhausted. Fell asleep no problems and woke up feeling.... FEELING.... I don't know because I have never felt this way before. I took my BP which is always horredously low in the morning. Average is about 50/30 sometimes a little higher or lower. Today it was 100/80 HR 67. Thought- that cannot be right- did it again.. same results. Throughout the WHOLE day I felt.... WONDERFUL. I still didn't change anything because I know one day doesn't mean anything but I felt like I was a normal person. I have been bed ridden since November keep in mind!!!!! I never felt dizzy, tachy, NOTHING other than.... NOTHING. I thought to myself... is this REALLY how people feel? Normal people get to feel like this every day???????? I also had no pain. I don't even think of it as pain because I don't know the difference. But I just felt great. Nothing hurt. I have NO idea what happened. I did nothing different or abnormal. Now, I can tell its wearing off... BP dropping and tachy coming on... but what a gift. I could not believe it. I just pray this is a sign that this is the first day of others to follow. AND I am sleepy so that means I will most likely sleep tonight so maybe tomorrow my symptoms will be less as well. I am not counting chickens or anything... but it would be nice.

    I realized how many people in the world take their health for granted and I know that I never will but what a great feeling that was. I am almost positive I could have done whatever I wanted today without syncope or any problems at all.... but with all of the issues... I didn't....but what a gift. HEALTH. My very first day of health that I can ever recall in my whole life. I am still beaming ear to ear because even if I never experience it again, NOW I know what it is like.

    Just thought I would share!!!!! Happy Friday Everyone!!!!

    Jen :) :) :) :) :) :) :) :) :) :)

  2. I just started having "seizures" during syncope over the last week or two. I'm 38 years old and never have had seizures, of course, I'm not awake and relying on my family to describe it. I do know that I've had incontinence with these (sorry if TMI) nd never had before. The whole scope of my illness is gradually changing. I'm having a lot of one side of the body spells- where I can't do anything on that side. It's numb, I can't see, my leg twitches....

    Every week or 2 things change...

    J

  3. I am just finishing Day 2 with no sleep. It is just nutty. I am starting to feel sleepy... but of course TODAY I have appointments. SOOOO... now what.????? I cannot fathom how I can suddenly go 48 hours and more *** NO sleep! I could have not done that at any other time in my life. I just feel like I am some kind of odd science experiment no one told me about! In Feb. or March I went 79 hours without sleep. Oh, that was great fun. I don't start hallucilating until close to 70 hours... but once I did... WOWZA!

    Jen

  4. Hi there! I was 'diagnosed" with POTS in Aug. 2011 but found out in Dec. 2011 I have autoimmune mediated autonomic dysfunction neuropathy- I still have POTS but all of a sudden a symptom? At Mayo in Rochester they gave me a list a mile long of things wrong with me. This is absolutely something I've had since childhood- when syncope began. My parents were not the most reliable but I remember having episodes often. I was hospitalized often- always had (still do) urinary retention soif get really bad bladder infections that I'm assuming would go in my kidneys so I'd be hospitalized. My parents never rememer me getting a fever at age 4-6 weeks old in which I was hospitalized due to a rare case of influenza. I had a fever of "over 105 degrees". Other relatives have vouched for the hospitalization- my aunt says I was around 4 weeks old and very, very sick. They weren't sure I'd make it. After that as far as I know I've never had a fever. My normal body temp is between 96.8-97.1 and no matter how sick I am it's there.

    Now to syncope- lets say syncope began at 8-10 years old. I'm 38 years old. In a horrible flare for a year now that's kept me bed ridden w/ several head traumas. Does it EVER just stop or as long as I have the symptoms I will keep fainting. I'm so used to it and I'm not awake, but it is taking such a toll on my family. Even if I crawl, scoot, whatever I still can get it. Sometimes with seizures/convulsion type twitching, eyes rolling back in my head. I asked my husband if it gets easier and he said: "No.. Never. I'm always afraid this will be the one time you don't wake up." I've been very sick this year- they were not sure if I would make it, (I live in Wisconsin rest of the fam out West) well, a possibly dying kid, sister, etc. brings everyone. I swear- ALL of these people watched me grew up fainting but you'd think I had cardiac arrest each time. I just wish it would go away- I also have children who are terrified as well.

    I guess I know the answer it thought I'd ask. Thanks, Jen

  5. My case is so..... I don't even know what to say because the doctors at Mayo can't even describe it... but I am having MORE days where I am feeling "better". But I am still having problems with other organs that can't be figured out so it is hard to feel great- kidneys, thyroid, bladder,... but if I were have to judge I would say I am on my way toward better than worse and that is really the first time I can say that. Whether it has to do with the chiropractor or not- who is to say (or placebo- I don't really care). The big thing is that my syncope is still as bad as ever and until I can get that under control as far as I am concerned I am stuck right here.

    But better days are better days and I am definitely not one to take them lightly!!!! I have had this flare for a little over a year and it has by far been my worst so I would guess that this is the type of illness that waxes and wanes.

    Jen

  6. Lemons,

    So are you like me where you will be up all night long, the whole next day and then possibly fall asleep the next night? It is odd because maybe from like 5am to 6am or 6am to 7am I may feel a little tired but I know I can't go to sleep then... so if I follow my normal routine withint 30 min. or so then I feel normal. We must be getting some kind of adrenaline rush, Lemons, you think?

    Jen

  7. Jesse,

    I have P.O.T.S but now they consider it a symptom and my primary DX is Autoimune Mediated Autonomic Neuropathy- will spare you the rest of my list. Because my BP gets very very low Because I have Orthostatic hypotension I have fainting spells at least daily. Now I'm bed ridden and get to crawl or be in a wheelchair- sill get concussions here Abd there but not like I was walking. Interesting about the dosing limit. Really didn't change a think. Just suspect I'm tolerant. Not sure what to do next. Can't take Mestononin.

    I o believe some people with P.O.T.S get syncope and could faint - but I think is under debate.

    Jen

  8. I'm in this rather annoying phase now with sleep. I would say 3 out of 7 nights, I don't sleep at all. Like, when I say no sleep I mean I'm awake all night and next day. What's really odd us that I'm not especially tired. The next night I will be or occasionally in the afternoon but for the most part I don't feel any more fatiigued than usual, which is a lot anyway.looks like tonight will be another......

    Jen

  9. Well, here is my opinion on this guy. First if all, I DO know this for a fact- is one if about 5 or 10 people in the world who can do this. He sets aside 2 weeks a month for other chiros around the country to come work with him to learn his technique. I know this because this is how I got in to see him. I know a girl who has a brother who is a chiro in Colorado. He was here in May working w/ Dr. Mcneely. They came over to see me and when he saw me (my friends brother- from CO who is a chiro) his face went white. He told me I HAD to see him ASAP because my spine was putting pressure on my brain stem. Just from looking at me be could tell? To be honest, I wrote both of them off as quacks and didn't think about it again, well, my sister (who is the good friend of Jessica- chiro in CO) would not let up. He was on vacation. Like I said, somehow he saw our interview and Ge said he knew as soon as he saw me on TV, So he got me in- he was on vacation. His LAST day. For this whole process, it's expensive. First visit- $500! When I told the receptionist who had come in as well to help- before I brought up money, she said this was his gift to me. I could see him for the rest of my life- he will NEVER charge me. So not sure what he would be scamming me or? He's actually losing money. I asked- "what's the catch?" Ge just kept saying "Jen, NO catch. I have been thinking about you and worrying since I saw you on TV. I feel God us calling me to help you. That us IT.". I asked if he wanted commercials, statements, be in brochures, etc... He said "Oh my goodness... NO! Can't have the business I have now!' he showed me his appt. schedule, He does have people from all over the world. He had names hidden but I saw a few towns bd countries. I saw Peru, Cosa Rica, and Germany before he closed. I had put on my Facebook I was seeing him and I had several people over the week comment, A friend I went to high school with in CA and was shocked because he lies out here at leat 2x a year to see him and has for a long time, Small world!

    I do have an appt. with another chiro on Thurs for X-rays. I want to know if he notes the same thing. But I'm not letting him touch me. And no... He is not a cracking type of chiropractor. He and his son have EDS. He would never do that. When I asked him about that he just looked at me and said- "YOU have EDS! DO not be cracking your back, girl!!!!" but he said for others: "if you must crack your back (in my opinion, don't, but if someone must) you have someone lighter than you walk on it like when we were little kids. " Abd he was very quick to note that is HIS opinion people go see them all the time- fine. But he is NOTHING like that and be did a residency in a hospital and was THE most knowledgable doctor I've seen about this yet!.

    Not sure if I shared this but after we did all the x-rays we sat there looking t them. He had his nurse do an X-ray if his neck and out it next to mine, The curves of our necks are 180 degrees of each other. Then he got out textbooks. he showed my husband and I every single spot that my cervical spine was applying pressure. He said see this? ANS. we wherein that room just going over my X-rays for 2 hours. I actually hope he isn't right because his prognosis is not good if he can't fix me. Plus I have all this fluid in there applying pressure. But I know deep down he is. He knows I'm a skeptic. He was prepared, AND I told him right away.

    He said we need to get started. There is not a lot of time. He asked me 'I would say in the last 2-4 weeks you started getting your first seizures, am I right?" NO ONE knew that. Only my husband, we looked at each other in awe. I didn't even go to a doctor be use I'm in the middle of switching facilities. I am so tired of being talked down to when I am progressing negatively so much, they see it but blame me. Because they can't fix it. And the last conversation I had with my neuro about an incident I had was so hurtful, that was the last straw. I had fallen, hit my head during syncope (now I'm having twitching or maybe seizures because I've had incontinence) and a gash. He said to have Rob look at my pupils and they determined yeah, another concussion. So I get back on the phone with him and my speech is slurring, I asked if I needed to come in. His response- keep in mind first part his tone was stern, almost mean- last part jovial: " JENNIFER!!! ( he never calls me Jennifer- I was being reprimanded) how many concussions have you HAD, helmet or not??? I CANNOT give you another CT scan, you know that. (I had 10+ CT scans last year-plus another 5 or 6 w/ contrast and oodles of MRIs but I don't know if they are dangerously) so what, you now have Concussion #13 that we know of. Will your life change? NO. You are just going to be a little less intelligent than you were before. Move on." he was trying to make me feel better, it did not work.

    LONG LONG story short- that's the plan if I continue and t thispkunt, i see no reason not to. He corrects me until it can hopefully realign me and remove the pressure. Then he said- the hard part is recovering. You will still have an autoimmune disease, EDS, autonomic dysfunction. He handed me my DX list/scroll and said I'm not curing these. I am hopefully just making you able to do so. He said I needed to report my seizures as ell, ASAP because it could mean things are worse thn he thought or nothing, he DOES NOT discount traditional medicine but gets frustrated that it doesn't work both ways- although MANY MDs will refer patients to him. Before I let him do anything, he said he would guess 10 things that I have happen to me that no one knows.. I told him- why not? He came up with more than 10 ur it was pretty amazing, I do t get brain freezes (actually I will brag a little and say my 11 year old figured that out researching the ANS because since Mommy has gotten sick, Josh's goal is to cure me, poor kid, o unless he's on the ice plating hockey during hickey season, doing homework, he is researching) but how when I bump my hand my other hand will immediately let go of anything it may have been holding, that I will go 3-4 nights with NO sleep and not even be tired the next day (pressure on that part if my hypothalamus ) it was amazing.

    I'm not saying he would work for everyone, maybe not even me, but WHAT if he CAN? A life, ANY kind if life, back??? Thanks for listening to my novels everyone, as usual. Believe it or not, my rambling Abd babbling has to do with the number of oncussions I've had Abd Pist concussive disorder.

    Jen

  10. OMG!!!! YES! I also had a tubal ligation with my youngest who is 9 so I suffer during ovulation. I know, a tubal is perfectly safe, causes no side effects, you will feel just as you did before. Thank you, doctor's, who have NO CLUE what you're talking about because my tubal ligation was one of the absolute worst health decision I've ever made. I know there are many women on both sides if this- so not trying to open a debate nd really have no energy for Internet Drama :)

    Anyway, yes. My symotoms get much worse. I NEVER have any if the tummy trouble so many of you struggle with (which shocks me- it seems if someone can get something, it will be me). But that week, for some reason, that week I do. I dread it because I'm nauseous the whole time. Then the week before my period I ha e issues. The week OF don't get me started, kids run away because I m so white and pale fom the enormous blood loss and (and I'm sorry... TMI... Massive blood cots). I'm in the hospital the whole week it seems! Luckily, now I have someone who will administer IVs at my house. Then the week after I'm so fatigued bd anemic, I'm miserable, I think that's all 4 weeks, actually. Well, that *****!!!! :)

    Do you have problems during the week of your period?

    Jen

  11. Oh Midorine :) What a love/hate relationship we have had. Today, in fact, is one year since I started it. Happy Anniversary, Midodine. I get a LOT of side effects from it. I'm still freezing, the chills, wierd anxious feeling, headaches ( but to be fair after 12 concussions not sure it is the culprit). It does not do a wonderful job at raising my BP- but it keeps me where I can be somewhat upright. I am bed bound basically all the time. For me, it doesn't las long, and I think that happens with a lot of people.

    I think I started really low- like 2.5. Then gradually moved up to 15ng 4x a day. It raises my BP about 10-20 points because my body has gotten used to functioning at such low BP I guess. My usual BP during the day is 50-60/40-50. Although I must say, even without meds-it's been creeping up a little higher. This week I started new dose of 20mg 4x a day. When my Midodrine just kicks in- I have about a 2-4 hour time frame of 80/60 or if I'm lucky 90/70. That's great for me. Then, in mid-day I take my Paxil and Adderall for my lack of Serotonin and Dopamine- I usually have 3-4 hours now where I feel pretty good. My only worry is that I "think" that I near the top dose. If I get tolerant to this..,,???????

  12. So odd.... I have so many symptoms where I may fit right in- Orthostatic Intolerance, tachycardia (50+ sitting and 80+ Hr standing but I haven't stood in forever), daily syncope, headaches, visual disturbances (double vision, floaters), no appetite, dizziness, shortness of breath, many more that may not relate so won't mention - but my bladder problem is now and has always been extreme retention. I drink as much as I'm supposed to, eat all that salt, but I'm lucky to go once every 2-3 days. I almost have that urge but it is there - forever, sometimes in the middle of the night if I'm tired, I may doze and wake a few times and then get back to bed after an hour or two. Received a TERRIbLE concussion that way but my family did not know who I was for 2 weeks I was so angry and aggressive and I don't think I've been the same since (early Feb). Finally agreed to what I swore I'd never agree to and that's a bedside commode :(

    I take Midodrine too- 15 mg 3x a day which seems typical. There just seem to b a few key areas where I just don't fit in...

    Jen

    So odd.... I have so many symptoms where I may fit right in- Orthostatic Intolerance, tachycardia (50+ sitting and 80+ Hr standing but I haven't stood in forever), daily syncope, headaches, visual disturbances (double vision, floaters), no appetite, dizziness, shortness of breath, many more that may not relate so won't mention - but my bladder problem is now and has always been extreme retention. I drink as much as I'm supposed to, eat all that salt, but I'm lucky to go once every 2-3 days. I almost have that urge butisut there - forever, sometimes in the middle of the night if I'm tired, I may doze and wake a few times and then get back to bed after an hour or two. Received a TERRIbLE concussion that way but my family did not know who I was for 2 weeks I was so angry and aggressive and I don't think I've been the same since (early Feb). Finally agreed to what I swore I'd never agree to and that's a bedside commode :(

    I take Midodrine too- 15 mg 3x a day which seems typical. There just seem to b a few key areas where I just don't fit in...

    Jen

  13. No, no cracking. I have always believed they were "less than" an MD. But, this man was pretty amazing. As soon as he's as me he said "oh, I was afraid of that.." we'll, what does mean.., He started talking about pressure on the brain stem, etc. I was confused and be showed me a mirror ( he had it touched me yet) and started my husband what he could see and what I could see- then we saw my whole right side was droopy. SO obvious! When we kef it was perfectly symmetrical.

    It's worth a try, right? If anyone know why it isn't please share!!!

  14. Couldn't really answer the third one for you. # 1 would be © I guess but I've always had it and #2 is very confusing, or will sound tat way. Always have it as far as I know but flares have been both. No continuity... Sometimes they are so severe I'm hospitalized day I after the flare began but leave w/o an answer and other times, like this one, has taken months to fugure it out like they fortunately did at Mayo. Just been tricky treat.

    Jen

  15. Yes... I have to keep my head in a brace type thing for 5 days- and because mine has progressed pretty far- he said after I'm "aligned" I have to exactly what I've been doing- absolutely nothing- for 60-? days depending on my response. I had failure in almost every body system so maybe he just wants to be extra cautious. I thought it was very interesting how be didn't discount the medical profession. First thing he told me is my body is healing from 38 years of trauma. He can remove the pressure from my brain stem, but my treatments will need treatment. He said it could be 1-3 years until I am well - but I will feel "normal" much sooner. I don't think I've ever known a pain free day. Everything he said and showed me had an answer and was logical. Every other doctor always has the "Shut up! Do what I say because I'm a doctor!" Really, have you EVER experienced MY symptoms in MY body? All I i have Ever really wanted was simeone to listen to ME, not make assumptions from a patient they heard about 5 years ago.

    I think the medical community would know a lot more about these conditions if they listened to US more Abd each other less. They have to classify us and research. When I started going numb, having seizures, my jaw locking up, not being to stand even w/o the hypotension - and my neurologist says these things- a,ong with my floaters, double vision, and horrible mismatched pupils that all I need was an extra manesium pill a day and my eyes will be fun. He said next I'm in Walmart check in their vision center just be sure. Medical doctors? chiropractors????? Can you DO both? Ow I'm just skeptical of everyone.

    Jen

  16. I am sorry about that post. I confused myself with that. Not quite sure what happened. I re-read it and thought that maybe I must have erased a few lines my mistake? Although, I hadn't slept in over 30 hours at the time I wrote it.... that was more likely the problem...

    The heart defect. One of the things he guessed is that one of my kids were born with EDS and I said yes..... and he knew I had EDS and and guessed at least one of us was born with a heart defect. I said Yes, we both had holes in our upper chamber of our hearts. He said- very common for EDS babies- tissue gets torn and they can be born with a hole. Luckily, both my daughter and I had our ASDs (which if you are going to have a hole is the best kind- upper chamber) heal on their own without surgery. I didn't even know about mine until it had already healed and they saw on an echocardiogram some kind of scar maybe that indicated it??? My daughter's was more severe/symptomatic but she had minor surgery for something else and reacted so badly to anesthesia we were trying to avoid it at all costs. She outgrew it (as usually happens with ASDs- many never even get diagnosed actuallY) by age 4. We both have harmless murmurs but healthy hearts. He also guessed that I had a bladder issue- and I DO! Major problems with retention especially but also incontinence occassionally. From the time he did the correction- I used the restroom successfully 3 times. I am sorry about that post. I confused myself with that. Not quite sure what happened.

    Anyway, with his treatment. It is called "Upper Cervical Care" that they use. First they look at you to see if they visually see any alignment issues. Take x-rays- then did some kind of "correction" they call it. I felt really nothing, other than his hands and he had some metal adhesions on my ears and he was finished in less than 5 minutes. So I lie on this table for 5 minutes and then we go back, take the xrays again to see if the alignment is fixed. If it is- mine was- then you go in this quiet room with recliners, blankets, just very quiet ambience, and wait an hour. Totally painless. But like I said the things that went away immediately: double vision, headache, misalignment of right side of face, ringing in my ears ( I have an almost constant ringing in my ears and a hard to explain electrical sounding buzz in my head- I would say I have them 80% of the time). Both were gone and had been present. I know there was more but now can't think of the rest. He also asked about my sleep, which is terrible and getting worse. I usually sleep 3-4 hours about 4 days of the week and do not sleep at all the other 3 nights. He said he could tell (before I even answered) that he could tell I hardly slept because of where my cervical "bone" I guess (I am so ignorant about this stuff) was pressing on my brain stem. Then he said when I fell asleep last night, the day of the correction- it may take me some time to fall asleep (and I was awake most of the night.... ) but he was pretty sure that I would sleep and sleep until someone had to wake me up...It was pretty amazing, because I slept until late afternoon when my husband finally woke me so I could get some fluids and take essential meds. He did an x-ray of his neck so he could compare it to mine. Our necks were facing different directions. So if his was like this: ( then mine was like this: ) Apparently, it should not look like mine. He said it was putting all this pressure on my brain stem- and all of specifically on my nervous system. So it could be, and in his opinion WAS, causing all of my autonomic symptoms at this point because of the level where they are. Every week I am getting more severe. Two weeks ago, I kept waking up with one side of my body totally numb and my jaw locked. It took me 3 days to work my jaw back to the point where I could open it enough to talk. When my husband called my neurologist he just said "That's neuropathy for you. Just never know what to expect." Really? Last week, every syncope spell was accompanied by either extreme tremors and like a convulsion or a seizure because I wasn't still and had incontinence and do with every syncope spell now. I did make an appointment with the doctor who just moved to Milwaukee- I am sorry I can't remember his name but he and his wife both specialize in autonomics. Dr. Chemeski or am I even close? He agreed to see me but not until September. Everything seems to be advancing. That is why I tried this chiropractor because he specializes is autonomic treatments.

    I am not sure if I should post websites but it is easy to find. Just Google NUCCA and you will find their direct website and about a zillion pages about it. I will tell you a LOT is negative. Most medical doctors who commented that I saw were extremely negative. I did talk to all of my neurologists that I have seen since my ordeal started and they all told me DO NOT let him TOUCH me. One actually threatened to not see me again in his practice if I was " lowering myself to chiropractic care." Little did he know I never planned to go back to him again anyway. I am not recommending this at all because I know very little about it. Some people call it a scam. Some call it dangerous. Some swear it saved their lives. All I can tell you is what happened to me and I think to say it was dangerous is definitely overkill. I hardly felt it at all, let alone pain.

    It is based on the NUCCA practice- and it is the group of doctors that do this kind of adjustment. Stands for National Upper Cervical Chiropractic Association. It also discusses a lot about how nerves are related to body systems and each symptom can cause different symptoms. This kind of sums up their belief and it comes right from their website. I hope it is okay to post and if not, I am sorry and feel free moderators to remove: "The focus of the NUCCA work is the relationship between the upper cervical spine (neck) and its influence on the central nervous system and brain stem function. It is this relationship that affects every aspect of human function from the feeling sensations in your fingers to regulating hormones, controlling movement, and providing the ability to hear, see, think, and breathe." In my personal case, as I viewed with my own eyes, my cervical spine was applying extreme pressure to my brain stem and on the opposite side that it should be on.

    I am still confused and unsure what to do. Does this mean that I don't have autoimmune autonomic dysfunction neuropathy and an aggressive autoimmune disease anymore? According to Dr. McNally (the chiro) all he is doing is relieving the pressure on the brain stem that should not be there. I am still going to have to rehab the illnesses I have and won't leave cured after these "corrections". And he was honest and said mine was so bad he wasn't sure he would be able to get the corrections to hold. The first one didn't in fact. I woke up yesterday, and when my husband came in to get me up, I saw tears in his eyes. He told me that my jaw was drooping and my whole right side was as well. It isn't uncommon for the first few not to take. So if it isn't better this morning, I go back today and try again. I am not sure how many times they try and if it doesn't take- if they just write you off. I asked and he said that has never happened before and it won't with me. But this is ME. LOL. So time will tell. Anyway, I wanted to clarify what it is they do. If anyone wants to look into more, like I said, GOOGLE NUCCA and you will find so much info! Be warned- most of it is probably negative and who knows? I don't know yet if it should be or not. I DO know that this doctor spent 6 hours with me. Called me that night when I got home to see how I was feeling. And called me 3x yesterday to check on me after he heard my alignment had slipped. He also gave up his last vacation day to fit me in because just watching me on the interview he was so worried by what he saw- and didn't charge me the almost $500 he charges others just because he knows what I have been through. And as far as compassion- I've yet to meet a doctor that comes close. He was professional and knowledable. He knew everything I knew about autonomics, EDS, POTS, you name it and I am sure a LOT more. I will leave it at that and update after adjustment #2. All I know is I want SOMETHING to work.

    Jen

  17. Hi Puppylove,

    Are you experiencing any benefits from the drug? If so, then you could try some of the ideas offered. It may help. Let your doctor know how much it is bothering your tummy. When I took it, the benefits just didn't outweigh the negatives so I stopped taking it. Let's face it, none of our options are FABULOUS but we all have different reactions and we are have bodies that work differently. So my advice would be to first think about how much it is helping you (and it may take time to get to the point where you are receiving full benefits). Is it REALLY helping you. If it is helping you and has a chance of helping more, there are options to help with the stomach problems.

    Good Luck, Hun. It's always something, with us, isn't it? So many decisions!

    Jen

  18. Well... This was about the strangest experiences I've EVER had. So we go in his office, and he starts telling me that all my problems are caused because my neck flexion goes all the way to the right vs. left. Okaaaaaaaay! Up until VERY recently I've never had neck problems, however, ironically and every day my neck is excruciating. So I'd said no manipulation but I would listen. So he says that when the brain stem is blocked by- something- it can cause problems. And basically it depends on how bad it is but the brain stem stores the nervous system... Etc.... I don't want to say too much because I will misquote him.

    So he looks at me ad we do the tests- look straight- look right. Vice versa. Eyes closed. Those are always disastrous for me. So he says he can tell by looking at me that I have serious alignments issues. He asked my hubby to come look at my face and what does he see?

    He says," I see my beautiful wife who has suffered way too long and I just want you to fix her!!!" suck up- we've been fighting all week LOL. He says okay- (chiro) Right eye? What do you see?". The look on my poor husband's face was like "great, now I'm screwed!!!!!" well, when I got there they took a picture for my file and I asked him if I could look at it. Chiro says "Sure!" So I found the oldest picture I could find of myself on my phone when Heakthy-.3 years ago. I absolutely am SHOCKED! How have I missed this? I then have Hubby take another picture. The 2 from today my right eye is so droopy I have NO clue how I couldn't see it. Well, lately my sleep has been awful and that increases the eye droopiness. I didn't sleep for 1 min. Last night or 2 nights before. My insomnia is so bad I am sleeping maybe 4 hours 3 nights a week and up all night the others. So then he says, what else do you see? NOW Rob!s getting into it thinking he isn't going to get in trouble. And he said her face is tilted... Chiro tells us both to look at my jaw- it is so out of alignment I don't know I was even managing to say a word. HOW could we miss this. So he does the x- rays and he says (of course, story of my life) he has never seen anything like I but the curve in my neck was in the complete opposite way than it should be. I can only get my jaw on the right open 30% of the way.. So he says how VERY few autonomic doctors recognize this tx but I gotta tell you- today alone he had people from Ausa, Peru, 9 states, And New Zealand. SOME doctors will suggest it when all else fails, but for the most part chiros are witch doctors (I will admit- I'm a skeptic!!!) I have these 3 major illnesses and your going to fix me my re aligning my neck?

    He tells me he has read my chart and can't imagine my frustration, understands my skepticism Abd he KNOWS how sick I am right now. He tells me not to underestimate the importance of the neck, spine, brain steam, nervous system and how they work together. I also have EDS and he believes in that connection and I wish I could recall his explanation. I asked about my Autoimune disease Abd how that factors in. He says it attacks your body- I just don't believe it's attacking this part, if it was the IVIG would have helped. Other measures would have. It's a theory - like we alll have. But I've watched so many people get their lives back I'd love you try it.. These "manipulations" are so minor you won't feel them. So, he says, if I name 10 symptoms not in ANY of your charts but I can tell by looking at you that you have or get- will you try it? I had to laugh. He was so nice, trying to help me, FOR FREE!! And he is so good natured about me questioning him- not like any of my neuros- I said "Okay, why not. Whatcha got, Doctor? " And he starts talking about symptoms I've never told a soul. Like I bet your right leg starts trembling so bad when you try to go pee that it's numb and blue after 10 min. Okay- score 1 for him but anyone could figure that out. Then he says that my jaw has always been maligned like that and it would come out of socket even as a kid... Ok- nother one- but that's easy. He said I bet you've had bladder infections since under age 2 and every cath makes it worse. Hmmmm.... True but is that in my records???? No, it's in my OLD ones from Cali. He guessed which joints I'd dislocated and how many times. Never been brought up. Guessed I had at least 1 of my 4 had EDS like me. Tried to think but no- not in any records because she hasn't been DXed. Then he asked if she was born with any heart defects- ummm, Wow. HevdoescNZoT have those. The final one- he guessed (because he asked Rob-my hubby if we chart my fluids which we do) and said he could tell me by looking at me how many ounces I'd had the last 3 days, what my sitting HR Abd BP would be right then. He was right with the ounces for each day- with 1-2 each day. BP was exactly on the money and HR off by 2 beats.

    I'm thinking.... WOW. This is his vacation morning. He came to help me because he saw my story. I'm not paying him a dime. I asked what he wanted in return. His reply: "I want to see Jennifer Glynn happy and healthy again. He said I read your chart, Jen. I know what you've been through. I CAN help. Just let me try. " I'm thinking-- commercials, brochures, testimonials- he said again "JEN! Nothing. I can't treat the patients I have now- hence Nov. Bookings! Not a lot of people can do this procedure. All I want is to see you walk and look healthy and happy- you are a nice woman with a nice husband and a beautiful blended family of 8 kids- your best friend is your husband's ex-wife and you put the kids first." Forgot about our TV interview!!!!!! We can't escape it round here!"

    Long story short- left without face or neck pain. No numbness in my feet. No double vision. No ringing in my ears and no ANNOYING electric buzzing in my head. For the first time in 14 months I had NO headache and my face was symmetrical!!!!!. I have a LONG way to go. In fact- NOThING can change for 45 days. At THAT point, if I'm still aligned, I'm READY to start the hard road toward healing. If I'm not aligned- then he admits he is wrong and he helps me find plan B medical doctor . But it was sure worth a try. He had compassion. He listened. He cared. I just heard him call my husband to make sure I'm okay. Oh, and I had to stay an hour after the alignment and just lie in a recliner- within 2 min. I was sound asleep!.

    Bottom line- so glad I tried it and what a kind and generous man to do this for us! If anyone wants more info- just PM me.

    Jen

  19. Well, not sure if I mentioned this or not- but I recently had some friends/family do a benefit/fundraiser for me- totally against my will! They started planning in Nov. and I think they waited until April Fools Day to tell me- so I thought they were joking until one of the kids showed me a flyer they found walking home. I just get embarrassed, nervous, etc, about such things..... But anyway- someone donated a first visit and a years' worth of visits. So I thought- okay I've been BEDBOUND and crawling around since Nov. no one can figure my very complicated case- involves autonomic dysfunction, POTS (which now is considered a symptom??? Still don't understand that), a very aggressive unknown autoimmune deficiency/disease, and a connective tissue disorder that the genetic doctor told me was EDS but she can't say that because this major facility does not and will link not link EDS w/ autonomic problems and believe its strictly autoimmune. I disagree, but regardless if I had.... Say... Gout. Would they not list the gout along with my autoimmune and autonomic issues? I've asked 1000x and still haven't gotten an answer. My DX list is more than a page long- who cares if it says- Connective Tissue Disease or EDS? I know, I've also had 12 concussions so I digress quite frequently....

    So today is the big chiro day. I've been told by all my medical doctors that he's not allowed (I thought that was funny... Am I 15 on my first date???) to touch me or give any adjustments, especially in my neck area. Until I figure out my EDS it is best anyway. The main reason I'm going is this chiro specializes in autonomics.... I didn't even know there was such a thing. He's supposed to be in th top 3 in the country (who knows, I always hear that). He must be good though because his new patient list was booked out until mid- Nov!!!!!! Not to mention his initial visit cost is $450.00!!! That seemed incredibly high to me but I've never been to a chiro so what do I know??? I'm glad someone (an anonymous donor) thought so much of my health that they would suggest some alternatives. WHY not??

    I will update when I get back later. See if he's worth the money!!!! I know it is true because I called as someone else to make an appt and she said Nov. 9th at the time and quoted that price!! Wish me luck! I told him ahead of time about the 'No Touching" rule LOL and he said- still, please, please come!!! I do know he has had my records a long time so has probably put a lot of time studying me.

    J

  20. Hi

    This is a relatively new condition that is concerning. I've started having tremors, twitching, jerking, and unintentional movement lately.

    When I'm sitting, my legs will violently twitch. My arms are just out of control. Just of nowhere they just fling (for any Seinfeld fans its like the episode where George fakes that arm tremor but unfortunately I'm not faking). My hands tremble all the time, sometimes I'm not even able to hold on to thing. And this is not minor trembling or twitching- it can get very violent like a certain part of body is having a seizure. I guess I've started getting it my syncope too, according to my family. Advice? Thoughts?

    Thanks

    Jen

  21. Hi!!!

    LindaJoy started a great thread about how P,O.T.S has changed her relationship for the "not-so-good"... and it got me thinking how many of us go through this every day. It's not like we have a sign we wear that explains it. When I was first was DX'ed I thinking felt slightly relieved. I'm NOT crazy, not for that anyway. Not too long ago I requested all my records- WOW! Never realized how much these doctors hated me!!! The office notes were the best- and so many lies! Anyway, I digress. I won't list all all my DX but I have a very aggressive autoimmune 'disease" I guess because they've never seen it attached to autonomic system before (that's why I'm not sure it is,,, anyway), autoimmune mediated autonomic dysfunction neuropathy-I have 30-45 seconds standing before I'm totally unconscious. No one has found anything to help. Tried IVIG- my body violently rejected it. It got into all my organs and blood. We are still waiting for that to get out of all my cells so we can try again, (sonething else,of course) I have EDS, Post Concussion Disorder (think I'm at 12 now for sure) and some other stuff too but those are the most dangerous at this point. I like to end with the happy because I try to be an optimist!

    Cons: how truly SICK I feel- most of the time. The debilitating fatigue. Its fuuny- I hated my job , but now that I'm not working- everyone has their lives. The loneliness! Most importantly the major strain and scary problems it has caused with my husband I love so dearly. The realization at who my "real" friends were some who were not- and it shocked me, because I've always been there for them. This will sound odd given the statements before, how much I WANT to be alone and need it. Next, this is shallow, but what these diseases has done to my body as a whole- physically. I've lost so much hair and weight not in a good way.. I don't look the same, horrible pallor, etc. There are many more, but that's enough to dwell on. I HATE how these illnesses have taken away my ability to be a normal mother and wife. I've missed out on so much. I've tried a few times to go to sporting events- I always ended up passed out, once with a very nasty head injury. The kids would worry, they have been through enough.

    PROS: I HATED my job! I do not have to go back!!!!!! The TRUE humanity and good I've found in people since this has happened. People who dont even know me, bringing our family meals!!! Grocery shopping. Sponsoring us for Christmas, had a benefit fundraiser that I'm embarrassed to say got us $22,000. There is so much more, money wise, but I don't want to sound greedy.. But it was almost excessive. People coming to visit me. My little Type A Self had to learn to accept help- not only that- but ASK! So hard. I could do everything, right????? Lol. Yeah, right. I think that even though I can't physically take care of my kids as in dinner, housework, driving, events, etc... I MiGHT be a better Mom, I actually listen to them now. I was always so busy that I was doing 5 things at once.., we have 6 kids- so I'd have at least 3@ a time asking me ths or that. I'd get frustrated. Or I'd listen halfway and do the "Oh REALLY? Wow!" thing. Still can't believe that it almost always applies, now I really hear them. I Enjoy them so much. Yes, I miss out on alot- but I am the most blessed of all. My best friend is my husband!s ex-wife. You read that right. My step kids mom is my BFF, She has 3 year old twin boys who i could not love more had i given birth to them, and that's how she treats MY bio kids,. We decided we were going to raise them all together and equal..... So all 8 kids are brother and sisters. The month I spent in hospitals- they kept all 8 kids so Rob could be with me. I NEVER take this for granted, nor them, I think, It's a miracle. There are so many more but last thing- it brought my extended family so close again and my dad, brother mom, etc. I think we all realized we could lose one of us at ANY time and never take each other for granted again! I live in Wisconsin- they are 2000 miles away in CA. I hate geography but you know- we really appreciate each other. In fact, my dad and his wife (who I consider my mom) wil be here tomorrow. I have learned a lot and my priorities were a mess- well, maybe not a 'mess' but misguided, Yes, a relatively clean house is important but not spending all day, every day- being the martyr- mumbling and slamming things around while I did it all. As awful as this ordeal has been for us, I'm not sure we could have learned these lessons without something this serious. Don't get me wrong- Pollyanna I'm not, but I know that God has a path and plan for us.... We just have to keep looking for it. I have a feeling when we realize it- it will be clear as day!

    I always say this was a pretty drastic way for Him to get my attention, but I never listened before. The more I could get done and and a horrible adrenaline junkie besides- plus all of these illnesses I had that no one know about yet. I know I said I was done.... LAST pro for tonight. My daughter is 13. She was born with a hole in her heart. Like me, she was diagnosed with a connective disuse disease at 13 months old, she couldn't sit upon her own and was close to two when she walked. Like me, this child was so flexible but now that I know more she knows not to show off that flexibility. The genetic doctor at the very large famous facility I was at was pretty sure I have EDS just based on the physical exam. Scary part to me at age 11 she started getting syncope. In 2 years she's had 14 syncope spells. ALL before any of this of this had begun had re-started with me. So the doctors told us just I heard years ago- she stood up too fast, some people are probe to fainting, yada yada, We both have chronically large and dilated pupils and our left is 25% bigger (I think- because my main artery on that side is very small compared to the right). Not sure about the artery yet for her. We are going to be doing some very advanced genetic testing, The genetic doctor said it was not uncommon for newborns to be born with large holes in their heart because of the stretchiness of the tissue. Hers was large and she was quite symptomatic, they tried to fix it but could not because everything was just like Gumby. So she was on oxygen, was always monitored, apnea monitor and monthly echocardiograms. When she was 6 it was there one month and TOTALLY gone the next. Not shrinking, not half the size, GONE. Another pro would be finding a cure so she doesn't have to suffer like we do- that goes for ALL of our kids, ANY kids, or ANY person. This facility however would not test her because there is no link to EDS and autonomic.

    Thanks for listening! Like I said I could add 100+ more to each list. God Bless

    Jen

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