Becia Posted January 28, 2014 Report Share Posted January 28, 2014 I'm about to go visit my third er in one day. Ended up in local one last night this time, can't talk, vomiting, migraine severe with dehydration, they started treating migraine as they could, but still I have lost the ability to form words in coherent sentences. Sent to OSU in Columbus oh, and they treated migraine further, nothing about my speech, and still left me highly triggered, dehydrated, vomiting mess.So friend is about to take me to Adena er, where my doctors are, much to their desire to not see me. This pain has to end, my pots is so highly triggered right now, I get any more upwards of .30 degrees on the bed, I pass out. I am choking on everything, water, pain pills, itty bitty pills, the works. No food in three days because of flare up with ibs, and well, everything's just going to pots.If they can do something about the intense dehydration, maybe my body will start to correct itself? I'm fluent in sign language, but those around me can barely remember the abcs, and I think my friend who speaks German would prefer to to curse at him right now in his chosen language.Just need some sort of answers, relief, anything, I feel like this is Potsie death for me somehow. Quote Link to comment Share on other sites More sharing options...
IceLizard Posted January 28, 2014 Report Share Posted January 28, 2014 I was in the ER last week, and having spells even while laying down, so unfortunately I know how you feel. Sometimes it does feel like you are dying.Have they tried giving you IV saline for the dehydration? IV Phenergan for the vomiting?Hang in there! You'll make it out of this. Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 29, 2014 Report Share Posted January 29, 2014 So sorry you are in an extra bad place again, Becia. Have they run a head CT to verify there isn't anything more severe going on since you've lost speech? Quote Link to comment Share on other sites More sharing options...
blueskies Posted January 29, 2014 Report Share Posted January 29, 2014 You have my sympathies. I was a regular visitor to emergency for migraine pain for years. Now I take opiate medication and this has been helpful. Not always (had a killer last week for 3 days and must admit was very distressed and depressed) but the opiate regime (low dose, now, for 7 years) helps and keeps me out of emergency (as we call it in Australia). I've tried everything else. The one thing that helped me with dehydration when I used to visit emergency was a iv saline solution. I feel for you, blue Quote Link to comment Share on other sites More sharing options...
Becia Posted January 29, 2014 Author Report Share Posted January 29, 2014 Yeah, they ended up giving me fluids, phennergan, Benadryl, and nubain last night at the er, and that helped the pain somewhat, I'm very itchy (to which they gave me some decadrone to help with it all). I honestly don't remember how I got into the house, other than my housemates dragging me into my wheelchair, dragging me up the stairs because my ramp currently has about three inches of solid ice on it (we keep getting hit by the snowstorms), and throwing me in bed.I am still hurting, but I seem to be talking better and making sentences. Last night while waiting for my discharge at the er, Lori and I talked for a bit, trying to recognize this headache, and all I could come up with is it had to be the up in Paxil in an attempt to fight my depression from this all. I thought I was doing okay, but I'm not. I'm talking extreme upset and anger at my condition, for the lack of answers, help when I need it, and just basically my family tossing me aside like I'm no longer important.I just keep wondering when I'm gonna figure out the magic key to my condition. I smile for the cameras, but inside I'm praying that maybe this won't be a day I have a seizure, please don't let me pass out and dislocate something again, please let my headache be tolerable so I can study a few pages for school, don't let my wheelchair tires come off again, because I don't have the energy to fix it, if I could just stand for a couple minutes I can put my pants on. All these happen on a a regular basis. I chose between eating and drinking. Which is more needed to me. I chose between cooking food or taking a shower, because both do me in so bad.Today I'm just staying in bed. Sending my scripts with a friend to the pharmacy, trying to get a hold on getting more fluids in me, and praying the headache doesn't blow up. Something has to give. My doctors need to stop fighting each other and get their acts together, because I've proven time and time again, I'm all in for anything that will help me, but I can't have everything interacting with each other trying to kill me in other ways. Get it together dudes... I pay you way too much money that I don't have to try and survive.And thus concludes, my evening, my thoughts throwing themselves out there, and my body... I want another nap. Quote Link to comment Share on other sites More sharing options...
IceLizard Posted January 29, 2014 Report Share Posted January 29, 2014 Glad you made it out of the hospital, but sorry you are doing so poorly. I hope you find some answers to your pain soon. Quote Link to comment Share on other sites More sharing options...
Becia Posted January 29, 2014 Author Report Share Posted January 29, 2014 I apparently already have an appointment with my neuro tomorrow am, and after that, we are apparently heading to my cardios office to see about Iv therapy. I've managed to slowly drink about 3 ounces of water, still having major issues choking. I passed out trying to take my midodrine, which is a huge pill, it's still stuck in my throat, and the coughing and effort I'm trying to dislodge it and get it to go down right, I can't manage it. No food yet today, we are all terrified to try it given how water has been with me. Gonna try and go to the store later with a friend to see about some ensure or something, if I Can swallow liquids easier, that would get some nutrients in me,it I know I have got to get more hydrated, for pots reasons and headache reasons.And out of all of this? I really want a strawberry milkshake from sonic. Maybe something cold will numb my throat a bit, at least make the swelling go down some from being irritate by the sharpness of pills and such I'm still trying to get in me to try and get back on a regular pots medication layout. Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 29, 2014 Report Share Posted January 29, 2014 Becia,Have you had an upright mri to check for chiari malformation at some point? Choking is a major symptom of chiari along with dysautonomia type symptoms and migraine type symptoms. Often conventional treatments don't control these symptoms in chiari patients because the root cause isn't being addressed. I obviously don't know if you have chiari or not but it's worth checking with your neurologist to see if you can rule it out. Only upright mri is truly diagnostic of chiari....not just a regular mri. Quote Link to comment Share on other sites More sharing options...
Becia Posted January 30, 2014 Author Report Share Posted January 30, 2014 I've had a regular MRI and lots of ct scans as of late, especially since the talking thing has really arosen up. I will see if my neuro would put in for that test tomorrow. From what I understand, we have lots of questions for lots of people tomorrow.I'm attempting to eat some really mashed potatoes and am choking. This really is for the birds. Quote Link to comment Share on other sites More sharing options...
gjensen Posted January 30, 2014 Report Share Posted January 30, 2014 Becia, did you get any Ensures? They and other brands helped me to keep my weight, and then gain back some weight. They are nutrient and calorie dense for the small quantities, which was helpful for me. I wish you well tomorrow. Quote Link to comment Share on other sites More sharing options...
BeforeTheMorning Posted January 30, 2014 Report Share Posted January 30, 2014 <<HUGS>>> for you Becia. I'm sorry you are doing so poorly right now, my thoughts are with you. I really hope that your appointment goes well today, and that you and your doctors will finally be able to come up with something that will really help you.Hang in there,Lyla Quote Link to comment Share on other sites More sharing options...
Becia Posted January 30, 2014 Author Report Share Posted January 30, 2014 Yep, we picked up two types of ensure last night, and chuckled a t the warning on the side that says you can't sell them in Vietnam or Mexico. I made some super super thin mashed potatoes too last night, I only got about maybe 1/4 a cup down then started throwing them back up. Will try the ensure this morning. Been told if I don't think I can swallow my midodrine (which is my largest pill and the most painful), don't do it. Tried to sip water all last night for some sort of hydration, but just stopped after about three sips because I was choking enough to nearly throw up the night meds I had managed to take after the mashed potatoes incident. Did get about two bites of ice cream down too, something cold to soothe the roughness of my throat, and that helped the night meds going down, but being nauseaous and bleh didn't help for long.I have two friends going with me, and we are not taking no for answers today. I don't want to be admitted, but I've been told to pack my usual stuff just in case, because they did this last time at my diagnosis, and we were not prepared. Quote Link to comment Share on other sites More sharing options...
Tobiano Posted January 30, 2014 Report Share Posted January 30, 2014 Becia,Hugs to you.Was the ER not concerned about your swallowing issues?! Have you had any evaluations for that...either a speech language pathologist doing cervical auscultation (listening to you swallow using a stethoscope) or a videoswallow study? I'm concerned about you possibly aspirating. You seem to be having challenges with multiple consistencies of food/liquid. Love how the ER discharges people without addressing these things...ahhh... you must be so frustrated. I hope your appointment goes well today. Quote Link to comment Share on other sites More sharing options...
gjensen Posted January 30, 2014 Report Share Posted January 30, 2014 Becia, I will be thinking of you today. I also agree with Tobiano. You need to get a swallowing study done. You need to now if the food is penetrating and/or there is a risk of aspiration. Something that you have to know. Quote Link to comment Share on other sites More sharing options...
Becia Posted January 30, 2014 Author Report Share Posted January 30, 2014 The er wasn't even worried abut the fact I couldn't talk. I couldn't form words, kept getting the wrong word out, nothing. Had a couple seizures even, and nope, just your typical migraine. My housemates are extremely mad at my current care.The neuro appointment was for nothing. He basically told me I would get over it, yeah, I'm not a typical case, but I'm not crazy, but you need to do this, and take this, etc. we mentioned I cannot swallow, so no meds are really getting into me at the moment, so he put through a medicine I could take for breakthrough pain that I have to inject, but I'm not able to take this medicine because of my heart. He basically has no interest in seeing me because "pots is a heart condition." Isn't it controlled by the autonomic nervous system? Isn't this part if the brain? Have I been researching this wrong or something, and how come lots of pots patients also have neurologists.On a weird note, he did say I wasn't crazy, I'm just not a typical case of anything. Not sure how that was supposed to make me feel, but okay, I told him I was stressed, and he said he knew, maybe I need to go see a counselor or something. I'm not opposed to this, but right now, my current condition is making me stressed. I can go without eating, that's not a big deal for me, but the hydration issue IS. If I can't swallow water, or Gatorade, or anything like I'm needing to, yeah, my pots flares up, and it's worse. Yes, this is stressing to me, wouldn't it be to you? I know I don't like the way it makes me feel, it's not cool.While I was in with the neuro, my power of attorney went to the cardio office, and I could tell he was extremely angry when he walked into the office. They also think none of my current condition really relates to them, so go talk to my pcp about this. He tried to get some various answers, but everyone kept shutting him out.I have a pcp appointment apparently for today as well, Dave (my pow) set it up before we even left the neuro office. So I'm hoping I can try to take a shower at some point today. I really want a shower. It's so physically taxing to do so, and do all these appointments, but my hair is greasy, my clothes are irritating me, and I just really want a shower. If a shower can help the pain, what's there to lose. And as a friend pointed out, if I take a shower and get admitted to the hospital again like I had before with this problem, at least I would be wearing clean underwear and have my legs shaved... Right now, let's just wash my hair, lol.I have great people in my corner, and I'm thankful for this board. I guess I will see what happens at the pcp office. I truly hope and think Toledo may be my best bet in the long run, and I'm hoping I get in soon, because this all is way too confusing to manage. Quote Link to comment Share on other sites More sharing options...
davecom Posted January 30, 2014 Report Share Posted January 30, 2014 What a struggle you are going through. Truly the fight of your life. Reading through everything you wrote, I can see that you have a superb attitude. You're saying to these doctors "I'm willing to do whatever you want, just help me." And yet they still turn their backs. You're being super cooperative, you just want some answers. It does sound like your neurologist is a hack. I hope you can find some better care in Toledo. Keep fighting. I think the liquid food, like Ensure, is a very very good idea. Good luck. Sending positive thoughts your way. Quote Link to comment Share on other sites More sharing options...
gjensen Posted January 30, 2014 Report Share Posted January 30, 2014 Becia, I do not know when Toledo is. In the mean time, I think you need to get referred to another neurologist. Any neurologist that does not order a swallowing study with complaints like that has a problem. In a sense I can relate. I have had no luck locally, and not made any friends. On a local level if I have anymore than a tummy ache, it is too much. Someone made the comment to me, that their doctor got more and more sheepish as they realized they were in over their head. I wonder if that is the cause of the pull back sometimes. I am getting a new GP after a frank honest visit last week. In so many words he said that he knew nothing and wanted nothing to do with it. I had to push him a bit to get that out. I wanted to know what I was dealing with. I need a GP that keeps it all tied together. The point in my rambling is that you have to get to someone locally that can be of assistance in the day to day stuff. I do not think you have found that yet. Doesn't sound like it. I am in a similarly colored boat. Also, try drinking out of a straw. The process is a bit different and might help. Might not, but it may be worth a shot. Quote Link to comment Share on other sites More sharing options...
Becia Posted January 30, 2014 Author Report Share Posted January 30, 2014 My "favorite" doctor moment came when I was first diagnosed, and we were realizing the issues I was having being able to stand and maintain at all, and I passed out, injuring my shoulder. Went to the gp, who learned I was just diagnosed with pots, and proceeded to tell me I was a liability, and she wanted nothing to do with my case at all. I should be seeing my cardio for a sprained shoulder? All I wanted was to be sure I didn't severely injur myself. Come to find out, I've dislocated my hip and my shoulder in my falls.The gp I see now seems to be a good guy, same office as the other, and seemed pretty willing to work with my docs, but the current issue is I need hydrating, I need nourishment, and I need it pretty fast. I've managed half a bottle of ensure today, choking all the way. I tried sipping some water a bit ago, and didn't do too bad, but I know that isn't gonna pull me out of this scenario just yet. Quote Link to comment Share on other sites More sharing options...
IceLizard Posted January 30, 2014 Report Share Posted January 30, 2014 Becia, when I had a migraine that included difficulty speaking and confusion (along with dizziness, vomiting, numbness, visual disturbances, and paralysis on one side), I was diagnosed with a rare kind of migraine called a hemiplegic migraine. See information here: http://www.webmd.com/migraines-headaches/hemiplegic-migraine-headaches-symptoms-causes-treatmentsI am worried about your trouble swallowing because I am afraid you may become dehydrated again. I really hope you can find doctors who will work with you to get better. You may need further autonomic testing because difficulty swallowing can be a sign of autonomic neuropathy. Quote Link to comment Share on other sites More sharing options...
Becia Posted January 30, 2014 Author Report Share Posted January 30, 2014 My pcp told me to head to the hospital, he was going to admit me and get this figured out, because I need hydration ASAP. I'm here, and now the hospital is saying there's no record, and I'm gonna have to go the er, and see if they will evaluate me for admit. I've been here twice now this week to this er.I'm trying to get answers, but I'm fixing to break out the screaming. I am so mad right now.Will keep updated as I can. Right now, I cannot talk to make sense but can type ok and I'm fluent in sign language, so I'm doing that too to get my points across. Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 31, 2014 Report Share Posted January 31, 2014 Can you get through to your pcp on the answering service? Quote Link to comment Share on other sites More sharing options...
Becia Posted January 31, 2014 Author Report Share Posted January 31, 2014 They are trying that now, I believe. Have one liter saline going now, but they are trying to avoid admit. If I could swallow, I need a margarita now, lol. Can I just wake up and it be next month or something? Quote Link to comment Share on other sites More sharing options...
Becia Posted January 31, 2014 Author Report Share Posted January 31, 2014 They released me home or back to OSU, which would end up just like the last visit, coming home at 4 am because people don't listen.We came home. Not the wisest choice, but it's all I can do. Mind is just way to mentally strained, and I know my friend was really ready to go crazy. He even called the pcp on his phone and had it on speaker, and the doctors just refused, said I had too many issues for them to deal with, and don't know why I would come to the er to deal with them.Tomorrow is a new fight, new day. And I have just sat here at my fishtank for about 10 minutes staring at my fishes to try and relax, and noticed, I have baby guppies swimming around. So, nothing really good happened for me today, but seeing that made me smile. Little baby guppies, lol. Quote Link to comment Share on other sites More sharing options...
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