tinkerbella Posted July 2, 2011 Report Share Posted July 2, 2011 I'm having a rough time. Thought I was near fainting and hitting my head over and over again at night after night. I also am having weird dreams and talking like I'm acting out a dream, at the same time and trying to walk back to my bed from the bathroom room staggering , falling and head dropping up and down over and over again. My son told me today that I was in REM sleep and having seizures. I've had a problem with my mood after these had happen. Does anyone know what I'm talking about? I've been very confused all week since they happened. scared ~ This happen every summer when it is hot or maybe it's being on the computer and tv on in the room. I don't know. Usually tests show my BP is about to faint.Bellamia ~ Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted July 2, 2011 Author Report Share Posted July 2, 2011 Also with POTS can seizures be a part of it ? I'm going to be checked out at Mass Gen in two weeks at Neuro. so I'll be in good hands. But till then I'm concerned. Thanks, and have a safe weekend everyone ~Bellamia ~ Quote Link to comment Share on other sites More sharing options...
gertie Posted July 2, 2011 Report Share Posted July 2, 2011 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? Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted July 2, 2011 Author Report Share Posted July 2, 2011 I can't do hormones...estrogen sensitive, so very good question????? I've been making nutritional shakes with almond milk, Greek yogurt, kiefer different flavors one brand I think was soy, (which truns to estrogen ) frozen strawberries, frozen blueberries, can of coconut water, frozen bannana, and blend. I then freeze the leftover in ice cube trays. It's all I want to eat...What kind of seizures do you have? Did what I describe sound like seizue activity? I have had 2 sleep studies in the past that show none of these. Ty for answering on this holiday weekend. I'm very greatful. I'm so exhausted and need to bring my dear dog out who also has seizures as a result from heartworm meds toxicity.blessings to all,bellamia ~ Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted July 2, 2011 Author Report Share Posted July 2, 2011 Anyone one else having seizures with POTS, now I know I didn't catch them from my dog His are so frightening, I wonder if he's as afraid of me, as I am when he is having one. I need to install movement activated video cameras to catch the event . Sounds like a good idea ~ Oh well, I talk to my son and see what it would cost ~BellaMia ~ Quote Link to comment Share on other sites More sharing options...
lieze Posted July 2, 2011 Report Share Posted July 2, 2011 I do wonder if you're experiencing a food intolerance with your new cocktail?I want so desperately to try my coconut water but am worried due to my sulfite sensitivity.When I get a hold of something that sets me off I'm in a stupor for hours.Kind of why I'm afraid to experiment.I'd rather eat the same old thing safe and get calories and nutrition in then something that my body responds to as if I'm poisoning it.With the addition of so many things in your cocktail it might be hard to determine if one item might be causing it?This is just based on my current state where my body seems to be confused and not realize I'm trying to nourish it. What a weird predicament.I hope you find an answer to your question.Sulfites do weird thing in the body if you have any type of sulfite sensitivity. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted July 2, 2011 Author Report Share Posted July 2, 2011 I don't know if I am or not ~ Although these have been happening way before I ever started coconut water. I'll make one tonight and tie myself into my bed and post a huge sign that says hit video camera on laptop and see if I can give you all a show tomorrow on youtube. I better wear my cutest jammies tonight and wear makeup to bed tonight. Please excuse my messy bed room. I've hired an organizer to come next week to help me clean the room out ~ I don't know why that privacy shade on my video cam won't work and let me be on an island beach some where. Oh well, I'll see what I can do for you all ~ Keep the ideas coming, I go next week to the docs. Thanks so much for all the support ~ Wish I had a hot dog and a hamburger right now. Darn it, why does my family have to go away on vacation on all the holidays? Come on doggie, "let's go eat some kibble and share a shake".Bellamia ~ Quote Link to comment Share on other sites More sharing options...
lieze Posted July 2, 2011 Report Share Posted July 2, 2011 I'm juicing here Bellamia since I'm reduced to cows milk and water to drink. Most premade juices have some form of corn derivative in them. I made the mistake of drinking 4 apples the other day. I got up to go out into the kitchen and was staggering. Dizzy thought am I going down.Had to use the bathroom really questioned whether I was up for it? Now that is sad. Thought I might fall right off the toilet. The action all that juice had on my body was frightening. Who knows if it caused toxins to be released.After I felt great it was like wow I feel like my whole body was just purified but the process was scary.I am watching those apples now.I love them but they pack a punch.I am with you on the cravings.I'd love to sit out on a patio with you and sip a coke.I think what I miss most is a nice big salad with French dressing and pizza. : ( sometimes I try to remember what it tastes like. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted July 2, 2011 Author Report Share Posted July 2, 2011 Lieze, You are so sweet! I wish we could sit on a great big porch and have a party and be normal. I would love to see all of you who have been there for me over the years. Oh how we would laugh, and laugh. I'm so sorry about all your food problems and I understand about the energy part and getting up. I struggle with that myself. It's all I can do to go down stairs and really pull something together for dinner tonight. But, I have tolaugh about it or I would be crying forever. We must lift up each others spirits so they can soar. Then we go back into the world of our families and try to survive to the best we know how teaching them what the life of Dysautonomia is all about ~We will survive!!!! Bellamia ~ Quote Link to comment Share on other sites More sharing options...
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