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Everything 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
  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 parent
  5. I have terrible balance issues- yet I crawl or scoot everywhere because I'm not allowed to walk. I attribute most of my balance issues to EDS Jen
  6. 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 ge
  7. 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
  8. Liz, This was just my personal experience, but Florinef does cause very severe headaches for me. Makes my head feel like it is in a pressure vice.
  9. 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
  10. 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
  11. 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
  12. 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
  13. 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
  14. I'm sorry to hear this. Like everyone said, it ends up vicious cycle. I love my memory foam as it keeps me kind of cradled.. I wish I had a miracle for you, but lots of sympathy. J
  15. 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
  16. 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!!!
  17. 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
  18. 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 a
  19. 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 c
  20. 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
  21. 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 bec
  22. 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
  23. 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
  24. Oh Kimbelllgirl- my cup runneth over., I don't know what to say except you are the same... Positive well loved, Abd always a word if encouragement. What a lovely compliment. I really mean that. Thank you and many any blessing to you, Jen
  25. 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'
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