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PalominoMorganParticipant
Yes, brain transplants are not a viable option sadly.
Regarding stones, what about irritation from urine in the bladder back flowing to the kidneys and causing irritation? So many of us have bladder issues as well which is affected by the brain in large part or part of the down regulation you mention in Part 2.
My thoughts even prior to reading some of part 2 (still working on it) is that the body starts trying to compensate and in doing so gets further and further away from a truly balanced state.
PalominoMorganParticipantNot me, but I did it my share of dog biscuits as a kid. Lol. The green were my favorite.
My 4 year old though always ask if she can eat her fingernail clippings. Pica has crossed my mind with her. Will see what happens in time.
Good luck figuring this out? Is it fiber deficiency maybe? Not sure what nutritional value there is to paper besides roughage.
PalominoMorganParticipantThis is an often asked question. It is VERY helpful to have an official diagnosis. It gives you a name for all the weird things that your body does that doctors can’t explain. EDS affects the body in SO many ways because SO MUCH of the body is collagen based.
Once officially diagnosed you also know you belong to the herd (of zebras) now and there is power in numbers. There are people who understand what you are going though, the headaches DocTards cause for us, and the daily grind to just keep going.
Knowledge is power. Knowing you have an EDS diagnosis on paper from a qualified M.D. is HUGE. There are still lots of a-hole doctors and nurses, etc but they can’t deny that you have a connective tissue disorder. That is a big deal and it affects so much of your life, your body, AND how medical professionals should treat you. Everything from closing a wound (stitches vs. steri strips), to why your body doesn’t react as expected to pain meds or anesthesia, and the fact that there is an underlying condition and it is not hypochondria.
Your body is mostly collagen. It is important for our medical professionals to know ours is defective and to treat us accordingly. There are lots more reasons too, but those are some of the big ones.
The thing that changed once I was officially diagnosed too was that I now knew what to call this thing I battle every minute of every day. It validated me and gave me a community to belong to. For me, the validation was a biggie.
Anyway, hope that helped in some way.
PalominoMorganParticipantYup. It could be blood or it could be CSF fluid. I can no longer bend over for this reason. Forgetting and doing something wrong is at least 72 hours for it to go away. Drugs and pain meds don’t help. Please read Dr. Diana’s Part 1 and Part 2 when it is available. It will explain SO MUCH, especially this pressure you feel.
PalominoMorganParticipantMy paralysis episode 3 weeks ago was while lying on my right side. And until reading a post I forgot that it felt like I was having seizure activity in bed last night.
PalominoMorganParticipantNurseBetty, anything is possible. That being said if you are dislocating and are hypermobile that is a big clue to look at EDS and see a geneticist. I was diagnosed with EDs and have never had a full dislocation that I know of. Lots of subluxations and popping things back in, but from the little you wrote EDs sounds plausible. People can have EDS and be relatively unaffected until something triggers their body (cue the mast cells).
PalominoMorganParticipantI haven’t read it yet, but her Dr. D the sleep thing is explained by neurogenic shock. I know when I looked it up it definitely fit. Maybe that will help explain the sleep paralysis for you.
PalominoMorganParticipantMy body has no internal thermostat either. I don’t get pounding so much as muscle tremors and pulses in different spots at times. I have some known triggers but other times it’s a mystery. Last winter I slept with 4 comforters and my infrared heating pad on my bed. This winter just a regular blanket, but will be freezing sometimes and then have hot flushes when I have to throw the covers off my legs or I’m going to suffocate. The joys of dystautonomia.
PalominoMorganParticipantGotta love the info. Bring that info from you aunts with you to your appointment with Dr. Francomano though. Jessica will spend a while going through family history with you in person before Dr. Francomano comes in. You can share those tidbits then. 🙂
PalominoMorganParticipantHorseHappy, you are very welcome. I too had never heard of it until the neurosurgeon pointed it out in my CT scans. CT images that had been declared “normal” by a well-respected radiologist.
I joke with Dr. D that I’m getting my M.D. one residency at a time as my symptoms dictate. 🙂 I won’t make it to nursing school to get my RN and then NP, but I can help as much as I can this way. I still have a few brain cells left to rub together some days. At least for a while. 😉
PalominoMorganParticipantI had a period like this in college. Never did figure out what brought it on or what caused it. I remember laying in my bed in my apartment and feeling like it was going to toss me out the window it was spinning so much. It was horrendous. The meds the health center gave me knocked me flat out too, even taking half doses.
Try looking up Meniere’s Disease. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001721/
Eagle Syndrome (a long shot but I was recently dx with this after years of symptoms). http://en.wikipedia.org/wiki/Eagle_syndrome
Let us know if anything improves.
PalominoMorganParticipantCant help with the Australia referrals. I get a good bit of my pain suppressed from an old school med, amitriptyline. I also take Mobic for joint pain/osteoarthritis. I found Tramadol to be useless. Hydrocodone does work for me though for break through pain I can’t tolerate.
Flank pain could be referred pain. Does he have sacroiliac issues? Lumbar back issues? Have gastro issues like gluten sensitivity/Celiac, food allergies, IBS, gastritis, delayed stomach emptying, etc? Also, I had flank pain when I still had my gallbladder. Just a thought.
Anyway, welcome.
PalominoMorganParticipantHi. Welcome. The poor man’s tilt table test ou can do at home is to take your pulse while sitting at rest. Then stand and take your pulse again. Continue standing and taking your pulse. If your pulse increases by over 30 beats per minute that is considered positive for POTS. The easiest and most accurate way to do this is with a pulse ox because it gives an instant read out of your pulse. They are about $50 here in the pharmacy/drug store.
Hope this helps. Let us know how the “at home” version goes.
February 22, 2012 at 5:16 pm in reply to: Do you feel sick when you lie flat on your back, or have you ever felt "paralyzed"? #1764PalominoMorganParticipantHere is what happened to me last Friday/Saturday morning after laying down for 20-30 minutes.
. I have succeeded in avoided the ER except for one trip in 1996, one in 2005, and now I have been 3 times in 2 or 3 weeks.
Friday night/Saturday am around 2:30 in the morning I was unable to move or respond to my girlfriend. At first I thought “oh I’ll just not answer her” as I laid in bed. Then, she asked if I was ignoring her, then said my name, that’s when I tried to answer her a little and couldn’t. She came around the bed and just stared at me. She kept saying my name in a panic and I was trying to talk but apparently all I could get out was “huff, huff, huff”. She later told the ER doctor it just sounded like I was having a bad dream. (My eyes were closed.) Eventually she poked me on the shoulder and said my name. That ticked my body off and an adrenaline surge ran through me and I started having spasms and seizure like activity. I’m sure all she could see was my right hand jerking, but my legs and back were all jumping too under the blankets in tons of mini spasms. She poked me enough and eventually I was able to get my right index finger to move. I pointed at my head and tapped my forehead trying to say “me”. She was making wild guesses, none of them remotely close. I was tapping my head and pointing down my body trying to tell her to pick me up. She was asking if I needed loratabs or something from the living room. In my head I was like “OMG… you suck at charades! Just shake the ____ out of me already!”
Eventually after minutes had passed and she was just panicked wondering if I was dying on her “my breathing was rapid, then shallow, then nothing for 10 seconds, repeat) I was able to barely force out the words “me…… up” She repeated them and tried to process what I wanted. She finally got it and I tried to nod. She then goes to move my legs which I had to groan “nnnnhhhhh” because I was seized up and it HURT. She came and picked up my upper body and sat me up.
Once I was up about 30 seconds I could talk but I was still seized up. I said “blood pressure” since I KNEW what was happening. She hurried up and put the cuff on, hit the button and said “holy S__t!” I was still cognitively confused and said “high or low?” She said “VERY low. 72/56” My next words were “very cold” and “phone”.
So, I called the PCP emergency number, tried to coherently talk to the on call dr, and was advised to go to the ER. After hours of being at the ER I was diagnosed with “near syncope”. I had been given fluids, told my potassium came back a little low, so I was given potassium, and was sent home and told to follow up with my PCP Tuesday. I already had a follow up appt set to go over my trip to see Dr. Henderson last week.
I had this weighted dream happen as a kid where I couldn’t move and it didn’t freak me out, but as an adult this was SCARY. It honestly wasn’t scary until I tried to move though. Until then I was in my head thinking I was just VERY VERY tired and really wanted to go to sleep. It wasn’t until I tried to respond and couldn’t that I was like “ut oh”. Then when I couldn’t MOVE and starting having spasms/seizure-like activity I just knew I needed to be sat upright and wondered how long it would take my gf to figure that out. I wonder what would have happened if she hadn’t checked on me or if she hadn’t been there. I think throwing myself out of bed might have helped break me out of it but I couldn’t even move to do that and what if I hit my head or hurt my unstable neck trying that trick (even if I could do it.)
I put my bed on blocks last night and figure it can’t hurt, but I see a “Come to Jesus” meeting coming with my PCP on Tuesday when I have to tell her what happened. You can only fool yourself and she can only fool herself for so long before reality starts getting pretty damn scary.
PalominoMorganParticipantYes to POTS & EDS. I got lectured about skipping meals. Florinef made my head feel like it was going to explode and beta blockers could lower my already low BP so they are a bad idea too. Sort of up the creek without a paddle. Getting 2nd and 3rd opinions soon. Will see where that leads. My PT is freaked and my PCP is very concerned bc of PT’s reaction and because of new symptoms surfacing.
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