gertie
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Everything posted by gertie
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At times my arms feel weak & shakey almost like I can't lift them. I mentioned this to my dr & he thought it might be related to my adrenal exhaustion.
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If I have a bad colon cramp I pass out so I've tried about everything to avoid that. The GI dr told me to drink 1 tsp Metamucil (psyllium) in 12 oz (not 8 oz) of water a.m. & p.m. Instead of MM I use organic psyllium. I still only go maybe 3 or 4 x's a week but it's more normal than a reg laxative. I use warm prune juice for a backup if needed. I also read on "ask Dr Stoll" forum to add mineral oil to the psyllium but I don't remember how much. Dr also gave me Miralax but I had an issue with the ingredients in it. It caused me bad headaches. Hope you find something that helps.
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When You Faint How Long Does It Take To Recover
gertie replied to gertie's topic in Dysautonomia Discussion
Thanks everyone, my last fainting episode was 3 days ago & I'm still not back to my normal which is not energetic to begin with. I can't get rid of my fear of another one. I know it will happen just not when. I hate living in fear. -
I guess it's my age but if I faint it seems to take me 24 hours to get back my strength. I don't have any energy & a fainting spell wipes me out more. When I was younger & could still work if I fainted in the a.m. I could still recover enough to get to work. That was approx 35 years ago before I knew what was wrong with me now when I faint I have to crawl to bed & stay for a long time. thanks.
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For Those Allergiic/sensitive To Most Meds
gertie replied to gertie's topic in Dysautonomia Discussion
Thanks Jenny, That's sounds like good advice unfortunately I've tried all the AH & all have triggered seizures. I took Allegra in a pediatric dose with less problems but eventually I had seizure from it also. I guess it's hopeless. -
Thanks Maggie, Optomap sounds like the way to go but I wonder how it sees into the optic nerve. I'll check it out.
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For Those Allergiic/sensitive To Most Meds
gertie replied to gertie's topic in Dysautonomia Discussion
Thanks Naomi, I would be happy if I could find 1 antibiotic I could take. I think Penicillin may have caused the worst reaction with throat swelling, itching, rash. Mycins are equally as bad. I've started with 1/8 dose even pediatric liquid & it's all bad. I know at my age I can't get by without something I can take for infections. The dr's I have access too have tried everything over the years. I know they hate having me as a patient. -
I'm 68 yrs old & of all the meds I've been given over those years I have 2 prescriptions drugs I am not terrified to take when needed. That also includes vitamins & otc drugs. I've never been afraid to try a new treatment or supplement but they have all made me feel worse. If any of you have this problem, how do you manage not to be terrified to go to a dr or dentist? The thoughts of having surgery makes me ill. I've been deathly ill from gall bladder attacks but feel that if I go for surgery I'll have to take antibiotics which I'm also allergic to. The drugs don't just make me feel bad they cause seizure, syncope, migraines, heart problems etc. Thanks.
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Could Mestinon Increase Migraines W/auroras?
gertie replied to hilbiligrl's topic in Dysautonomia Discussion
I'm not familiar with mestinon but I do know anything that constricts, or dilates the blood vessels will cause a migraine or any med such as an AD that changes brain chemistry will trigger my migraines. -
Thanks everyone, I too get a brain buster of a headache. Kate, I had my appt last Friday & would have cancelled but it was an emergency so I had to go. I have to go back in a few days to have one eye dilated & checked again & I'm already stressing over it. I will take half an Ativan before I go this time to see if that helps. That might be something for you to think about. I'm so tired of being allergic to everything.
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Do any of you have weird feelings when having your eyes dilated? I felt nauseous the last time I had mine done but wondered if I was just nervous. The drops didn't have epinephrine in them. The nurse let me read the box but the ingredients list meant nothing to me. thanks.
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Thanks enko, I'm not in pain from the eye. I will be rechecked in 1 month. I do have a lot of headaches, mostly migraines. Good luck to you.
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enko, I was tested for glaucoma but didn't have it. The only problem I've had before this hemorrhage has been the vitreous detachments. I've had migraines for years & can't help but think that has been a factor in the hemorrhage. I remember them telling me years ago the vitreous is attached to the retina & when the vitreous detaches there's always a chance the retina will also. I'm sure you've heard all this before. I hope you don't have any more problems. I
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Have any of you had a problem with optic nerve hemorrhage or vitreous detachments? I've had 3 or 4 detachments & now the hemorrhage. I was told to be careful that these could lead to retina detachment. Dr's are always telling us senior to exercise & be active & when we do this is what happens. Now they tell me be careful, don't bend over, don't lift, etc. Don't know what to do anymore. Thanks.
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jenwic, I use Magick Botanicals oil free shampoo & other hair products. I order them from N.E.E.D.S.
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Thanks everyone for your support. Naomi, Thanks for articles. I do have MCS that started about the same time as Dysautonomia. I had toxic exposure to pesticides several years ago. I also spent many hours over a 3 mo period at Dr Rea's EHD clinic being tested for allergies, using the sauna, learning what to eat & avoid. Of all the treatments I've tried it seems I had a negative reaction to most everything. As someone said nothing is a cure.
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I have temporal lobe seizures but so far only partial. I start getting a strange feeling like I'm walking into a dream, a familiar place, a place I want to go but am not completely there. The dr called it dejavu. It's hard to explain. I still hear everyone talking & carry on a conversation with them if necessary. I always have a headache after.
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Ditto to what everyone else said. If it's not caused by Dysautonomia I don't know what it is, but I hate it.
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Thanks Naomi, I'm not sure why we're like this but I hate it too. I have migraines & seizures & know that most people with these are sensitive to odors. I think it's just part of autonomic nervous system dysfunction. What irritates me the most is when people with the fragrance lie to me & say they don't have any fragrance on. Life with dysautonomia is bad enough without having to deal insensitive jerks.
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I know I've posted about this before but I need your help again. I will begin by saying I do have a good family & am trying not to alienate them by being a nag about coming in my home reeking of perfume. I've bought them unscented laundry detergent, hair spray, soap etc which they will use until it's gone & then it's back to the same old stuff. It's their life & I can't tell them what to do. When they're here I just suffer knowing I will have a migraine or sinus inf from being exposed to fragrances. They came in yesterday, I had a migraine in the afternoon & have been sick all day. They came again this afternoon so I know it is going to be another migraine tonight & the exposure makes me really nervous & feel like crying. It's not a new thing, this has been going on for 25 + years. They've been told time & time again how sick this makes me. I can't move because anywhere I go there will always be someone that reeks of perfume. When I read this back I sound like a pity party. How do you handle a situation like this? I've reached the end of my proverbial rope. Thanks.
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I have had Hashimoto's since the beginning of Dysautonomia. One time I will have thyroid checked & it will be low, the next time it's checked it will be normal. I have not been able to take any medication for it because of this.
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Thanks for your help. I always dread the dentist.
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I'm glad you're being checked by a neurologist. I have dysautonomia/POTS & I also have seizures, migraines & too many symptoms to list. If I use hormonal therapy of any kind I get some weird symptoms & most meds do me the same way. Could it be a med or supplement you're taking causing these symptoms?
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Appetite Issues With Dysautonomia?
gertie replied to rmlyonsfamily's topic in Dysautonomia Discussion
I don't think I would ever eat if I waited until I got hungry. I have to eat because of hypoglycemia. My appetite was better when I was taking Neurontin. Is she a diabetic? I'm wondering why she is drinking diet soda? They make my heart arrythmias worse & trigger a migraine but of course everyone doesn't react the same. I wish I knew something that would help her. Hope she gets better soon.