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OCsunshine

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Everything posted by OCsunshine

  1. Oh, Dizzy, thanks for asking... It really hasn't been that excruciating the past two and a half weeks. I started Neurontin almost 2 weeks ago, and I haven't seen any change since then. (The pain lessened before I started on that med, so I can't really contributed it to the med helping.) My GP told me to stay on this low dose of Neurontin until I see the neurologist in Nov 8th. I do feel a heck of a lot sleepier lately, though. Don't know if it's because I'm tired because we just moved (stressful!) or if it's due to the Neurontin. Hhhmmm. I have always gotten 'sick' and have 'symptom flare-ups' but I rarely feel "sleepy" like this, know what I mean? I am not totally convinced that I have Trigeminal Neuralgia (what my GP said he thinks I have). I don't have sharp electrical pains, it's more like a deep throbbing. And there is no trigger like chewing, biting, or something touching my face. It just comes and goes whenever it wants to. (I have just gained this info on TN from websites... so I am just comparing my symptoms to what I have read online about TN.) Anyway, I'll keep you all updated after I see the neurologist. Thanks for remembering and asking about it!!
  2. Lauren, That was a FANTASTIC email. Good job! *High Five* to you!! We do need to get this story out there... so many medical stories are out there on CNN and news shows every day (autism comes to mind, it has just exploded in the news community). We need OI to be one of those stories, I feel so strongly about that. I just crave to someday say to someone "yeah, well I have Neurally Mediated Hypotension" and they say "Oh my goodness! I know all about that!" Instead of looking at me like I just told them I have "ookeeepookeedokeylokey syndrome" and they obviously think I have lost my mind. Hrmph.
  3. Hey folks, I was just looking on www.drphil.com and it says one of his upcoming shows is going to be about extreme disorders. There is a link (on the homepage) saying something like "do you want to be on the show? do you have an extreme disorder?" So I clicked on that and sent a short email saying how Orthostatic Intolerance is a physical disorder that keeps people from actually -standing upright- or sometimes even -sitting- upright at all. Hey, that is 'extreme' to me, don't you think? Anyway, just a suggestion... if you want to go to the website and write a very short, intelligent-sounding email saying how there are so many people out there with OI (NMH, POTS, etc...) and it would be amazing to have this disability discussed on the show. Just a thought....
  4. Yep, absolutely. She is completely "normal" (at least in -our- world!) Sorry this is such a hard time, but she will recover... viral illnesses attack our bodies in ways that 'normal people' could never understand. My healthy friends get sick with a virus or whatever is 'going around' at the time and they think they are dying for like 48 hours. I catch the same thing they had and I'm down and out for 2 weeks or 3 months, depending on my health -before- the virus got me, and how strong the virus is. The best thing I can suggest is don't go back to school or start up with major activities until she -knows- she feels strong enough. If I push my body too hard and try to 'recover' before my body is actually 'recovered' then I'll have major regrets.. she will probably be lengthening her recovery time if she gets back to activities too quickly. Best wishes to you... keep us posted on how things are going!
  5. I do have leg cramps, I think they might be "charlie horses" but I'm not really sure. They are the cramps in the muscle behind the shins and they are EXCRUCIATING. I always get them in bed, usually I will wake up with them. It takes about 2 minutes, but I flex my feet and work the muscle out... the pain eventually dissipates, with some soreness afterwards. I'm not sure if that's what you're talking about (I think a lot of people get "charlie horses" but I'm not sure), or if you mean general pain. I get deep throbbing pain in my bones, I have had it in my shins many times. They will make me collapse on the floor, the pain is so deep. It feels as if my shin bones are going to break in half. No doctor has been able to figure this one out... I usually take Darvocet to help the pain. I also get that same pain in my forearm. It's very unusual, very intense, very.. weird. So, that's my experience. I'm not sure what you mean, so I don't know if I've been helpful, but just thought I would share!
  6. This is a very interesting thread. It seems the folks that have replied so far are pretty active (but that's probably to be expected -the first to respond are more active and the ones that aren't able to respond can't write very much to tell us about being bedridden). Does that make sense? I know, I am confusing myself... As for me, I have been at both ends of the scale. I have had years of being completely bedridden (*waves* to all of those out there that aren't up to responding... I have been there, and it DOES get better) and I've had times of being able to take a few classes at my community college. So my health is like a roller coaster... you just never know what you're gonna get (or maybe that's a box of chocolates...). The fall semester last year I was able to take a class at our local community college. I did very well. Then this past spring semester I was able to do NOTHING, not even get up and walk to the bathroom by myself. So... go figure. It has to do with weather, the viruses that go around (I catch everything and it crashes me for months)... As for my education, it's been part-time off and on for the past 6 years. I started off going to college for a teaching degree (elem. ed). Then I realized that standing in front of a classroom all day and getting little kiddy-germs was NOT good for my health. I couldn't do that, much less the 5 days/week deal that comes with it. Ggrrrr. So I decided to shoot for a major in Art, but that involved driving farther to the larger University and walking across campus a lot and I just can't do that. So, to sum up, I have learned to be happy with my God-given skills and abilities and I use them the best I can DESPITE not having a degree, yet. I have a love for children (hence the attempted teaching degree) so now I spend a few hours each week working privately for a family (like babysitting) that has 2 sons with autism. I love it! I also run my own business called Sunshine Designs that fills my desire for art and creativity. Sounds like a lot of work, but actually I have it set up so that I keep my handmade and painted items in an Art Gallery all the time. They sell my items and I don't have to do anything except go there maybe once a month and check my inventory and I can add new items anytime I want- so that means I can paint and create anytime I want, but I'm not on a boss's schedule. So I am very blessed to have filled my 2 "niches" in life in ways that I can handle. I am counting my blessings. Of course it's hard to answer that social question "So what do you do?" because it takes a while to explain, but... oh well... it works for me. Looking forward to seeing more replies on this topic!
  7. Hi all, this is being carried over from my last strand "Mouth Pain / Throbbing" because I finally have a diagnosis! Trigeminal Neuralgia. Now I have to still rule out other things with bloodwork and an MRI, and I'm going to see a specialty doc to confirm the diagnosis. My GP is pretty sure that's what this is, though. WHEW! So I just googled the terminology and found all kinds of info about it, along with great info on Dr Ben Carson (Hopkins) and how he treats this problem with surgery. Right now it hurts SO BAD I am ready to go in for surgery tomorrow, BUT I understand that my doctor wants to try smaller treatments first (I got a Rx for Neurontin, 100mg at night to start with). Just wondering if anyone else was familiar with TN and the treatments?
  8. My GP said he thinks he knows what it is! My diagnosis- Trigeminal Neuralgia. He prescribed 100mg Neurontin to calm the nerve down (hopefully), a lyme test to rule that out and an MRI of my brain to rule out other problems. We'll see what happens, but he said he has about a dozen of his patients that have this same exact thing. Interesting... maybe I am not a total freak. :-P
  9. Congratulations! That is such a wonderful feeling! What a wonderful birthday present for you, too. ;-) Big HUGS and SMILES and JUBILATION!!!
  10. Well I am definitely asking my doctor about the NTI thing. Wow! I have heard something about that, actually... a mouthpiece to help with migraines. And I -DO- get killer migraines, so it probably can't hurt to try it! I did email my Hopkins doc and explained this mouth throbbing (it seems like such a small thing to complain about, but it's seriously like having a THROBBING pain in my teeth almost ALL the time and I am about to lose my mind!!) He replied with some good insight and ideas. I will go ahead and copy/paste some of it for you guys: "Rachel: it sounds like it might be an irritation of one of the nerves in the jaw area, given that they can't find anything else specific that is wrong with the teeth. I would think an infection would sooner or later become evident on an x-ray, or with a pustule along the gums. If it is a nerve problem, I wonder if acupuncture would be help, perhaps. A longer shot is that the throbbing makes me think of a variant of a migraine headache. There has been some work recently on migraine headaches responding to 400 mg a day of riboflavin (vitamin B2), which would be a pretty simple thing to try, without side effects of importance. Riboflavin is said by some to help with other kinds of pain as well, so it would be a low risk thing to try, and wouldn't interfere with the diagnosis of another cause for the pain. Your GP might have other ideas about whether it might respond to an anticonvulsant medication, or how else to treat it once he examines you. Let me know what he says."
  11. Morgan- Tell me more about the NTI. What does that even stand for? Where did you get one? How did you know that's what you needed. Poohbear- Nope, no x-rays of the sinuses. I will ask my GP about that on Monday, though! Sorry I confused you about where the pain is coming from. That is the MOST confusing part of this problem! It's like... it's not my front teeth, and it's not my back molars, it's like the middle of that section. Like halfway back in my mouth maybe. It usually hurts on the bottom row of teeth, like under the teeth. When I said the "front" I meant the front of the teeth out by the lips, not behind the teeth. Does that make sense? Sorry- I confuse myself sometimes. :-/ And yes, I absolutely get relief from Tylenol and Ibuprofen. So maybe it's not a nerve problem? Grrr. So frustrating! I have been more aware of my mouth today and since so many people mentioned grinding and clenching, I am being extra- aware to keep my jaw relaxed and not clench my teeth. (I don't think I do that normally, but over the past 6 months or so I have been extra stressed b/c we were buying a house.) Maybe that aggrivated something? Hhmmm... Thanks for all of the help. I have been writing down everyone's ideas and responses and will take them to my doctor on Monday. Thanks, guys!!!!
  12. Okay this is all great info. First I will answer some questions (I appreciate y'all helping me out and trying to get to the bottom of this). Yes I had x-rays done by the dentist and the endo. They all said they looked normal and nothing was wrong. The surgeon looked at the same x-rays and said it all seemed fine, too. The pain isn't exactly constant, but it does hurt almost every day (maybe 6 out of 7 days). If I don't take Tylenol PM before bed, it will almost always wake me up at like 1 or 2am throbbing and I am frantically searching for ibuprofen in the dark. It is an INTENSE throb! But then I can wake up fine and maybe spend half the day before it starts throbbing again. Where does it throb? It's not my jaw. Not my cheek area. It's like mostly down on the bottom of my teeth, it's the front area of my teeth and not the back or deep inside, know what I mean? Like the side of my teeth that touches my lip. It hurts down in the gum line I guess. But there really is no specific place. It radiates all around and sometimes I swear it aches from the top teeth and not the bottom! Does it increase with clenched teeth? Not that I can tell. It doesn't hurt when I chew or bite or do anything like that. It hurts when my mouth is still and not eating. All of a sudden I am like WHOAH and I frantically search for pain killers to calm it down. :-/ Poohbear, I -DID- have my wisdom teeth out in December! All 4! You had a chipped bone?!? Whoah! It got infected and caused constant throbbing? That sounds really like what I am getting! But I saw my oral surgeon today and he didnt mention that as a possibility at all (he is a very well known, great surgeon with a great reputation). So I just don't know! OH, I was also asked about the "abnormal findings" of my endo. Well he did all of those tests... he tapped on my teeth (apparently if you need a root canal, the tapping will hurt on that tooth), I felt nothing bad at all. He did hot and cold sensitivity stuff, no problems at all. Then he did the metal rod test thingy... he held it onto ALL of my teeth on the left side and I felt NOTHING at all. He said the meter went ALL the WAY to the top and I had no reaction. He said that even 'normal people' with a healthy tooth can only handle going 1/3 the way up the meter and they have pain. Soo...? He said he can't believe that all my nerves are dead in all of those teeth, I mean I am only 24 and that would just be crazy! So nobody knows. I do feel like something is being overlooked. I feel like I am being passed around and no one really wants to bother with it. But it HURTS me and it hurts almost ALL the time and is driving me crazy!! Thanks for all of the interest! PLEASE keep giving me ideas or questions I could ask doctors or ANYthing! I am going to see my GP on Monday. I don't know what to tell him really... just explain my problem, but I am sure he'll be stumped, too. :-( One thing that popped in my mind was trigemminal nerve pain. Usually that type of pain is not constant though but brushing your teeth, touching your face, eating...things like that...will stimulate the nerve and cause pain. Have you recently had any wisdom teeth or other teeth removed? I had a bone chip from having my wisdom teeth out that wasn't noticed right away. Eventually it got infected and then the source was obvious but until that I just had a persistent throb.
  13. So I have had this deep throbbing in the left side of my mouth for about six months now. My first dentist said "let's just wait and see if it goes away" (brilliant idea- not!) and my new dentist thought it might be caused by a cavity in the back. She filled it. I still have pain. She took the filling out and put a medicine/sedative in it. I still have pain. I am pretty convinced it's not that certain tooth, because the throbbing is like in a general area and it's not really that far back in my mouth. However, the dentist sent me to an endodontist. I thought I would get a root canal this morning and all would be fine, but the endodontist did all kinds of tests and proclaimed that I had "Abnormal Results Across the Board" but could not find a specific tooth that seemed to be the problem! He sent me to an oral surgeon who I saw this afternoon. The surgeon found nothing wrong with my teeth or tissues or anything! So he suggested I go back to my GP and also see a Neurologist and Pain Specialist. This is all driving me crazy! I thought that this was just a tooth problem and a filling or a root canal would solve it, but once again (story of my life) I have been claimed a "Medical Mystery." I am really upset b/c the throbbing is so severe, I take ibuprofen all through the day and take Tylenol PM every night just to make it through the night without waking up in severe pain. I told my doctors/dentists this, but they just shrug and send me to someone else! So does ANYBODY have ANY ideas? I am desperate for ideas or information! Clues? ANYthing? Thanks!
  14. I have gotten many saline drips over the years. I have a standing order from my doctor where I can walk into my ER anytime and they are supposed to give me the treatment. My doctor also does it in his office (he says it's less stressful for me than having to deal with the ER doctors). I get several bags of warm saline in me at a very fast rate. I usually don't have to pee until many, many hours of bags going into me... I do get dehydrated very easily and very often. The saline really helps, it seems to give me super energy for about 2-3 days and then I crash again, unfortunately. But it might be better for me to not USE that energy up and just take it easy after the IV drips.. then maybe I wouldn't crash afterwards. Even though IV's are unpleasant (just the needle thing) they really do help the body and are pretty natural- as opposed to trying meds or things like that. Clean saline can't really hurt you, as far as I know. It's worth a shot!
  15. Well testing is good to rule out an other problems going on, but I think morning nausea is pretty common with us, unfortunately. (Am I right, folks?) I got sick (CFIDS & NMH) over 10 years ago and have had the morning nausea every since. Sometimes it's not so bad and sometimes it's totally debilitating. I have had all kinds of GI tests (yuck) and have had other GI symptoms/problems resolved along the way, but "morning sickness" is just a way of life for me. I try to schedule my activities for after 11am or better yet- in the afternoon and evenings only. Like I said, some mornings I really am "okay" but most of the time I struggle with... actually I would call it a "hangover" although I have never had a real "hangover" caused by alcohol (I don't drink). I think this is what a hangover -would- feel like. I just get it for the fun of it, I guess. :-/ Looking forward to seeing more replies on this topic.......
  16. I just had my wisdom teeth out last Christmas (all 4 removed- 3 were impacted badly and 1 had not even come in yet so they went wayyyy up in the sinus to pull it out). I did fine with the anesthesia. I went to a very good oral surgeon and he gave me extra IV fluids and watched my BP constantly throughout the procedure. They gave me a bit of laughing gas first and I wasn't sure why they did that, but it made the "IV needle going in" experience very pleasant and almost non-existent. Next thing I knew, my sweatshirt was back on and I was sitting up in a chair and my husband was trying to pick me up to carry me out to the truck. The recovery was painful because the surgery was pretty deep, but I got through it. Think ahead about the pain relievers, because you will need strong ones to cope afterwards. I spent the first 24 hours after surgery on vicodin, which has no effect on me... so I was dealing with straight, pure pain for the first night and day, which was miserable. But once they switched me to percocet things went much better and the mouth was recovering after about 1-2 weeks. Just thought I would share my experience. These things ARE scary, but we DO get through them. Take the precautions that you and your doctor feel are necessary and make sure you have a caregiver after the surgery is over, you'll need help recovering (changing ice packs, making applesauce to eat, etc..). Let us know how it goes!
  17. I agree with everything that's been said so far. If you are doubtful and don't feel sure that the gall bladder is really the problem, get a 2nd opinion. Talk to a doctor that you feel comfortable with- a doctor familiar with OI/POTS. We have such a complex illness... I have had bowel problems and all kinds of weird belly symptoms since my diagnosis in '94. Somewhere along the way my doctor found polyps on my gall bladder. Even then he voted not to take it out b/c he just thought it wasn't necessary, yet. Then I started having major attacks (oh, unbearable!) a couple of years ago and of course then it HAD to come out. Much better now! If you DO get your gall bladder out, no worries. I just have 4 small incisions (and 1 large one for my appendix), and the small ones didn't hurt at all. I went off the pain meds b/c they made me feel sicker, and I did much better without the pain meds. Let us know what you decide to do. Surgery is never the first answer... be sure to calm your mind by talking to other doctors and making sure this is really what is right for your body.
  18. This is probably a common symptom, but I just want to throw it out there because I'm having such trouble with it. I have overdone it a bit (with activities and moving and cleaning house and just 'life' in general) and even though I'm not mentally fatigued, my body just won't let me MOVE anymore. I don't have pain, but I get sick to my stomach whenever I walk around. I feel like if I don't lay down and stay perfectly still and in a flat/horizontal position, I am just going to throw up everywhere. Yilch. This isn't new for me, it's happened all of my life when I overdo it. I guess it's just my body screaming at me to "LAY DOWN, ALREADY!!" It's just the nausea that is so frustrating because I really can't get anything done when I am trying so hard not to vomit. :-/ Anyone else know what I'm talking about....?
  19. Well when I first became ill and was trying to find a treatment program that worked for me, my regular blood pressure reading was about 60/40. I couldn't even sit propped up in bed without blacking out. With the meds and other treatments (and after a long period of time), I come in at about 90/60 now. On a really super duper good day, I'm up there around 110/70. :-)
  20. When I was very ill I could do no exercise whatsoever. When I started to get better I could do simple stretches while sitting or laying down. When I progressed into a "fairly good" stage I could do pilates regularly. I have been in periods where I can do some 'low impact cardio' and I have no bad side effects. To sum up- I think we A) must consult our doctors, and listen to our bodies... not necessarily in that order! ;-) Some docs will say "push yourselves as hard as you can go" but that might not be best for us. I really listen to my body. Some of us here will probably never be well enough to do real "cardio" workouts. I used to try my mom's "Gazelle" and just after 30 seconds my heart rate would be awfully high and the problem was that my heart rate never returned back to normal- not without a trip to the ER at least. It's like my heart didn't know how to re-set itself. Very exhausting. Very scary. Take it very easy. Pilates and Yoga are very good places to start. If your doctor approves it, try a simple beginners video and try it. I can do pilates because it's all laying down on the floor and my heart rate rarely gets very high.
  21. Well I know we all get very unusual symptoms that make our doctors raise their eyebrows and frown like they're trying to multiply 456,603 by 72 in their head... and they just can't figure out! Many years ago I started getting this WEIRD pain symptom in my back. I would feel absolutely fine (well as "fine" as we folks can be) and then all of a sudden I'd get this 'shot' up my back. The best way I could describe it was like someone set my back on fire and then stuck duct tape to my skin and then ripped the duct tape off REALLY fast. It would be excruciating- tears would come to my eyes- and 3 seconds later the pain would be gone. It was that fast- but it was just awful. I told my osteopath of neurology what was going on and he said it sounded like 'nerve' problems in my back. He felt around there, worked on me for a few weeks- he gently manipulated my muscles and got my blood flowing better and since then (about 6 years?) I haven't had that problem. Of course our pains and our causes are different for all of this, but I wrote to say that there is probably a specific cause and probably a solution. Sometimes our symptoms are unexplainable, but sharp pains like that probably do have issues with your nerves that might be able to be worked out. Let us know how it goes!
  22. I would call it a 'condition.' Although when I describe it to people I sometimes just refer to it as a "Disabilitiy." Seems to have more of an impact- trying to get folks to understand the gravity of a "condition" is very difficult.
  23. I think it might also be because of the salt content? Not sure, though. I know that a lot of things are considered "bad for you" but they are on my list (provided by my docs) of things I -NEED- to eat as much as possible. If I'm in a restaurant and other people see me salting my food like crazy, I usually get comments on it. I'm told that I don't know what I'm doing and that it will eventually kill me. They just don't understand that my body -needs- that. If I don't inhale salt constantly (so to speak) then I wind up taking more and more salt tablets just to stand upright. It's much cheaper to use the restaurant's salt shaker! ;-) Anyway, so I think most people misunderstand our need for salt and electrolytes. Also, the sugar thing... but a lot of drinks are loaded with sugar so I don't see why they would target Gatorade. Just my 2 cents...
  24. I don't quite have the chiari malformation, but am borderline... so they call it "cervical stenosis" for me. I have a friend (met on a list-serv, she lives in PA) who has the chiari malformation, though. She had brain surgery to correct it (Dr Weingert at Hopkins did her surgery). So I am familiar with her experiences, and have had similar problems b/c of the narrowing of my spine in that area.
  25. My doctor realized I had developed a milk protein allergy soon after I became sick. I'm told this is quite common for people with OI/CFIDS for some reason. Lactose and I get along fine ;-) but it's the protein that makes me very ill (stomach pains/cramps, intense pain that goes down my arms and through my body, headaches...). I can still eat a piece of cheese on a burger, but when it comes to milk and ice cream and things like that I must have soy products. I look for the PARVE symbol on almost everything I eat.
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