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zoe ashcraft

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  1. Hi all, Well, Propranolol was the Orthostatic TAchycardia specialist's first trial with me and I'm really confused about the results. First I had a lot of wheezing- it did get better over time- and as long as I only took 1/4 of a pill instead of a whole one it seemed like having my heartrate, slowed and strengthened was helping. However, what I didn't tell the doctor was that I was told I might have the beginning stages of emphasema. (sp) On the other hand it could just be an Ehler Danlos thing with the lungs. Anyways, I've heard that beta blockers aren't given to ppl with Emph. I'm wondering how the beta blockers have or haven't helped any of you. Last night I tried again to take a full half dose- (play on words?) and had more trouble with that whole weighted down body feeling and difficulty moving and functioning, difficulty walking and breathing, (shortness of breath, fast heartrate) To top it off I was wondering if the bb. could raise ICP- because the horrendous searing pains in my eyes, (esp. right eye) I used to get with my seizures was really bad- but has been worse overall lately anyway. I know it's conveluded but if any of you are up to sharing your experiences with beta blockers, I'd be grateful, thanks. z
  2. Have you ever taken a beta blocker? I'm wondering what the beta blocker does if you have adrenaline issues and autonomic issues. It's all so confusing.
  3. Hi all, I'm wondering if there's anybody else out there in Dysautonomialand who has seizures when their blood pressure is taken. ??? I'd really like to chat if there's a yes~ thanks,
  4. Sure! What would you like to know? How about the basics of adrenal fatigue or dysfunction and how it relates to Dsyautonomia? I know I've done enough reading to be considering doing just what you are- but it requires my making that first step to see someone like a Natropath or whatever- that tests the adrenals more accurately than a regular MD. My daughter had adrenal fatigue and a lot of times we have had similar issues (much to her dismay) and she was btw. helped by a natropath and is doing quite well now. Have you also looked into the pituitary gland in this combo of hormones and adrenal function? I have settling of the cranium and signs of hormonal imbalance as well- with all these factors it's difficult to know where to start. Thanks for whatever you can share.
  5. Hi all, I'm having to look at the full scope of Dysautonomia diagnoses- and am wondering how many of you have the PAF (Pure Autonomic Failure or MSA (Multiple System Atrophy/Shy-Drager Snydrome ??? And I'm also wondering if you all have a map or list of good doctors for Dysautonomia. I'm in California. Thanks, zoe ps. My seizures are lasting for about 12-15 minutes- actually lots of them linked together- are people with Dysautonomia ever at risk of damaging their brains?
  6. Hi Janie, thanks for replying* My 'daughter' has sigh~just turned 18. So, the situation is sticky. She's an adult and also doesn't want to hear about My problems or the chance of her inheriting any of them for Sure. I've thought about calling her doctor and seeing if he'd test her on the sly for me, but she is an adult so I'm sure he wouldn't! ARgh. Ah, well- maybe I can 'use' her older sister on this... older sister (24) has EDS and was tested for POTS- they say she didn't have it but I don't think we're real clear on whether the person doing it was knowledgeable or not! A friend of mine with medical training said that if my 18 year old had been sitting there for a while talking to the doctor and then he took her pulse- it wouldn't really be a true pulse rate and that that's why they generally take your pulse first thing when you get in the doctor's office. (this was news to me~) She said that if the first scenario had been the case, then it would probably be within norm. for an athlete and daughter of 2 families with low BP tendencies. But you're right, the real POTS testing is what I would like to see done.
  7. Hi all, I have so many questions, I'll try to just ask a couple at a time. First off, as I always had low blood pressure, super low blood pressure but was super athletic it was never a problem until after my heart surgery- and while looking back I can remember a lot of times my peers thinking I was drunk when I wasn't- (maybe that was POTS) - so maybe there were small signs of it- it was certainly never a problem. The way I see it, (but don't understand it) is somehow the heart surgery itself, opening that whole upper body, taking out the heart, putting the whole breathing and heart functioning on machine reliance and the position of the neck during surgery, plus the inactivity, loss of muscle afterwards must somehow have been the precipitating factor for POTS to become a real problem for me. Does that make any sense ? Someone mentioned to me that it might have disturbed the vagus nerve- I'm curious for many reasons, one of which is that one of my daughters just now beginning to have a few health problems has a BP of 58. She had a fainting episode this last year, but other than that seems healthy in regards to POTS issues- at least for now. Is POTS something that we can be prone to succumbing to later on in life - like ummm.. I can't think of a good example right now. But is it something that preventative care can ward off if we have the disposition for it- as young people? I have no idea where to beging for treatment myself. I know one of the threads I read here mentioned Dr. Nazli ? with NIH I think EDS specialist as being real good understanding seizures and POTS, ect. I was supposed to be a part of the clinical trial in 08 for connective tissue studies but got lost in the paper work when they had a staff change- wrote them recently and haven't heard back. My lame cardio told me there's no treatment for POTS. Well, needless to say that was the last straw with him. I knew already that he was pretty worthless and I need to find a new one. Dr. Francomano from Maryland recommended a saline infusion every two weeks for me but seeing as I live in CA - and haven't but just now found a good MD. none of my doctors have been willing to follow thru on recommendations fro specialists. Are saline infusions that effective? I had it done once by fluke and it made me feel gReat but it was done hand in hand with a caffeine infusion too for head pain, so hard to figure out. Other than that I wear the waist high 20-30 compression stockings everyday. If I don't I have severe pain- which I know isn't what they're prescribed for, any idea how this figures in? They seem to help otherwise as well, just overall feeling of wellness and strength. Sorry it's so long~ hAA! I tried.... from somewhere over the rainbow, zoe
  8. hi, thanks for replying are these seizure events something you attribute to your POTS or something else or a combo? ?? What brought them on? thanks again, keep lookin' for the rainbow, and in the meantime danCe in the raIn. zoe
  9. Hi, new here- I was wondering if you would include a shower chair in your list. ? I know mine has certainly been a lifesaver, literally for me. As I tend to faint, or at least become unable to function in the water easily. Is this a norm with POTS? I am also thinking I must start carrying earplugs with me as the sounds sometimes get triggering- along with sunglasses for bright lights and my ativan for calming down any spasms that start to crop up. I do all of these already except the ear plugs and I keep kicking myself for forgetting ! thanks. zoe
  10. hi, well, maybe it's not a POTS thing~ I just thought maybe since it had to do with blood pressure and all- anyway. the cervical traction unit is a blow-up device that stretches the cervical spine- (pulls my head away from my body)- and relieves any brain stem compression going on. Frequently- as I had this day- taken a long car ride- the last road was somewhat bumpy and even though I was wearing my full brace- from waist to neck- to hold me stationary- it was too bumpy, probably added to the problem. I have just recently started to carry it with me as unfortunately- these things are happening. argh. usually ppl are not conscious for a Grand Mal Seizure. I go in and out, but am mostly conscious- therefore, as USual, never am the norm. (you know the feeling?) I'm guessing now my seizures got worse cuz my doctor took me off the Methadone too fast for someone with a seizure disorder. And to fix it he put me ON too FAST too- ach- (uneducated doctors, what shAll we do?) learn for ourselves. it sure does get old though. anyway, thanks for responding even though you don't share the response with having your blood pressure taken. Cheers* from over the rainbow zoe
  11. Hi all, I'm new at figuring anything about my POTS out and it seems at this point near to impossible to separate the symptoms of POTS, Tethered Cord, Cranio-cervical Instability and Non- epileptic seizure conditions apart. So, for starters, I'd like to ask you all what happens to you or does anything? when you have your blood pressure taken? I know for me it's caused an internal pressure to rise that I don't know how to describe and often caused me to have stroke like symptoms or severe spasming. Last week, I asked in my doctor's appointment if I could decline having my blood pressure taken, was told no and when they took it I had what they called a grand mal seizure- although I was still conscious most of the time- and finally was able to instruct them (my husband being present understood my lame speech) to get my cervical traction unit from the car- which calmed down my system completely - along with their lovely oxygen* Oh, I do love oxygen* Anyway, searching for clues, from somewhere over the rainbow! zoe more about me at www.CarePages.com (prismed)
  12. Hi all, sorry to be redundant and reply to my own post but, i am starting to understand maybe ~ how POTS plays a role in my life for the first time- having read some of the past posts on seizure related issues and POTS- Tell me what you think. Today I was stanDing- (hard to do) - since my heart surgery- I've gotten better by small increments- i was able to stand for 60 seconds last year and maybe double or triple that now- but I was over my limit maybe and told my two visiting sisters I needed to sit down but it was too late I had lost ability to function- they had to kind of half carry me to the bed where i started to spasm and thrash and spit froth about~ with their still being able to understand me a bit - they put me in my Pronex cervical traction unit to stretch my neck and that eventually calmed my body down- thus I avoided a full on seizure event- at least that's how I see it. what do you think? is that how it works? i mean, i've read about how people can go into - (i don't know what to call it- various neurological problems- ) from standing too long- thus the name- Postural Orthostatic hmmm. (better stop while I'm ahead on sp. that one) ugh. gotta go, i think my dear sisters left me a gift- the flu~ from over the (achem) rainbow, zoe
  13. Hi all~ To answer your questions~ yes, I do also have Ehlers Danlos Syndrome too. And Tethered Cord is for me- where the spinal cord is attached too low and it therefore ends up pulling the brain out of the skull, much like Chiari- creating brain stem compression. I have lost almost all my bladder control, am getting a catheter any day now, and the bowels are too hot either- but don't have insurance to cover surgery- cuz none of the surgeons here believe in this type of TC- only at The Chiari Institute- (I'd really only want the surgery done there anyway)- because they know how to work on ppl with EDS. My heart surgery was necessary bc. of my EDS. and they damaged my neck further becz they didn't use special treatment for my neck- They were just thinking about taking special care of my heart and all those tissues!!!! (oops) So, surgery is a scary thing for me- since two months afterwards is when I started to lose control of the left side of my body and fall over and not be able to move or speak for an hour at a time. I dont have the silent zones much anymore - since I wear a neck brace- 1/2 the time - but I can't walk- more than a wee ways- just barely get around my house, sometimes have to use a walker, always a cane- when out and scooters- tethered cord does that. I don't have anybody taking care of my seizures. I've had a verY hard time getting anY medical help. I've JUST NOW landed my first good MD- in 20 years- he's a long ways away, but maybe I'll get somewhere now that I have hm. TCI and Dr. Francomano have been there from afar- for me- but it's difficult for them to do much from such a distance- (That's New York and Maryland)! Nice to meet ya'll. rainbows, zoe
  14. hi all, i've had a history of a variety of seizures since my open heart surgery a few years ago and that includes the long stupors I've read people talk about where you can't move or speak for hours. but presently my seizures are the thrashing about kind, including the frothing at the mouth, yadayda- i've been tested -videoed for four days- my seizures are real, but not epilipetic- but it's hard to figure them since they're changing now with a change in meds- (i'm going off Methadone) i'm just wondering how common it is for ppl to have seizures as a result of POTS and how dangerous or not they might or might not be and also- I personally always thought mine were more a combination of extreme spasming from tethered cord and vomiting, passing out, throwing up from cranio-cervical instability. anybody have any thoughts? and who / what kind of doctor would help? hA! (doctors- do they help?) yuk yuk yuk. we can still HOPE!!! from somewhere over the rainbow, zoe
  15. Thank you for your advice~ I hate to be obtuse but the hearing and balance testing be done with an ENT then?? or the Vestibular Clinic type of place? A couple of years ago, when I first started having trouble with my balance badly- two months after open heart surgery, i'd lose control of the left side of my body and topple over, not be able to move or speak for an hour at a time. my cardio- said he thot i might have an inner ear infection since i felt dizzy with certain sounds and put me on an antibiotic- 3 weeks later my MD said he didn't see any sign of an infection- i always wondered if an inner ear infection was the same thing as a regular ear infection and if it could be ruled out by looking in the ear why my cardio didn't look- (i've got a lot to learn) the only other thing is that i've been getting small sores on my head too. Bumps as well, but i can't be sure if they're from falls i've taken or not. one is a reallLLy old scar from falling off a moving vehical when i was young and it's always bothered me, but moreso recently. btw. I do have MediCal- State provided insurance, it's just often extremely hard to find anyone who takes it and they have an outrageous law that doctors can't take you as a self-pay patient either- which I really don't understand- but that's the breaks. Thanks again for the input* from somewhere over the rainbow, zoe
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