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Everything posted by Angela

  1. havent tried the other but clozenapam i spelled wrong but is (klonopin) def helps me.
  2. i apppreciate all the info...btw.... DANA you have the most beautiful voice.
  3. I get up at 6:15 a.m. and usually my 2 and 1/2 yr old wakes up same time. I drink a gatorade, take 1mg clozenapam and potassium and get my son his breakfast. He sits on the floor with me and plays swords with my eyeliners while I put on makeup and pin up hair. Then I get dressed, get my son dressed for daycare and wake up his dad at 7:00. I get my stuff ready for work (lunch) and boyfriend drives us, drops off son at daycare and me at work. I work 8-4 primarily seated. My symptoms (adrenal rushes, dizzy, vision issues, irratability, tingling sensations etc.) comes and goes throughout the work day, always worse if it is a stressful work day. A coworker currently drives me home where I walk or drive to daycare to pick up son (its only about 300 feet away, in my neighborhood). Then I talk to my son about his day, make a vodka gatorade, take vitamin B, magnesium, D3 and calcium, coq10, and sit on porch or by the pool watching my son and boyfriend play, until it's time to make dinner. I make dinner seated on a stool. Then feed son, watch some t.v., and go to bed around 9:00, take 2 more magnesium pills (I think it helps make me sleepy) Day starts over again the same. Weekends are no better, my son will not sleep in and my boyfriend is not a grocery shopper or a cook so braving the grocery store I hate, it makes me supersymptomatic. Can't do all the garage sailing, concerts, daytrips up north and fun stuff we used to on the weekend anymore. But my boyfriend does 90% of the cleaning (he is a clean freak) and I try to handle the laundry. On superbad days I sit on the couch and do basically nothing....tell the boys to eat leftovers. I do feel bad for both of them for having to live through this with me. WANT THE OLD ME BACK!!!!
  4. Ditto.....drinking helps my bp go down when it is spiking but overall alchohol always calms me down, I am less symptomatic and feel like I can take on a little more or just relax if I am stressed.. I've never got the feeling since getting pots that it hurts me or causes adverse reactions. I drink vodka/gatorade. I always drink at least 2 glasses of water before bed for rehydration. Plus I drink a G2 in the a.m. and a glass of h20 per hour during the day until I get home from work. So I am sure I am well hydrated.
  5. I took it in 2006 and didn't notice major side effects although they put me on Yaz at that time since you have to be on birth control. Now I hear all kinds of bad stuff about Yaz. But I didn't start having severe pot issues until last year.
  6. To further explain her theory, she is saying that at night the intracranial pressure causes our kneck muscles to tighten in order to protect our brainstems, which in turn pulls down on scull just enough to cause "cranial setting" which in turn causes intracranial pressure to spike. She suggests using a collar to avoid the skull from being pulled down.
  7. even pots without eds this is common from what I understand. Dr. Driscoll has an interesting theory about high intracranial pressure causing this and suggests trying a soft cervical collar when you sleep, if that helps, than a prescription of diamox she recommends. Its a pretty interesting topic and what she suggests makes sense to me.
  8. Funny topic. A mayo clinic neuro told me he thinks I developed POTS due to PTSD. He said that he is getting vietnam vets in who have just recently developed PTSD, it can take time for it to hit and just one little trigger to set someone off, even after over 20 years.
  9. Mine is the same. Never used to crack and now just turning my head slightly it pops and cracks. Dr. Driscoll theory mentions this i believe...prettyill.com
  10. Hi Batik, come to think about it, it's the cars closest to me on either side that make me feel icky so sounds like the same problem to me. I just don't seem to have that issue with people. Funny, but on the otherhand I am not usually in crowded environments and don't have to walk busy intersections. Havn't been to a concert in years, so who knows.
  11. Vodka and gatorade....with sliced cucumbers. It's yummy, has a calming effect and my bp always goes down, enough for me to feel good enough to do a couple laps in the pool and make dinner before I have to sit back down and just chill. But I hear too many drinks can cause higher bp the next day....dunno, moderate drinking works for me maybe not others. I read on Dinet in another post that several hyperpots moderately drink with the same benefits but not sure about the other pots with the hypotension. I refuse to get on a bb or chlonodine because my bp is low normal certain points of the day and I know once chlonodine wears off your bp skyrockets so it sounds like I'd be chasing my own tail. Proponolol (sp?) made me sick so I quit taking a very tiny dose after 3 days and it took an entire week for the negative effects to wear off. Usually my spikes occur first 30 minutes of getting out of bed and then return if I am stressed at work, driving, and then later in the afternoon my bp usually goes up but from what I understand the human timeclock your bp is usually at it's highest around 3 or 4 p.m. I also heard medical marijuana could help (not remembering where I read that) but no way I want to try that, probably have a panick attack:)
  12. Deep breathing is proven to help and in my experience it does, my neuro gave me a cd called Coherence you can google it too but I find it only helps when I am doing it and it is impossible to do all day long! Also, mayo clinic said a drink or two will lower bp, I find that it does mine. But I am not on a bunch of drugs so I guess that option depends on what other drugs you are taking.
  13. I take naturemade magnesium/calcium/zinc D3 tablets, 1 in am and 2 at night, pottassium in a.m., oral b12 liquid drop as needed but mostly in afternoon for energy, and COQ10. They are all supposed to help lower bp as mine is too high when I stand up (not sure about the COq10 from what NMPotsies stated??? I don't have problems with any of them, I think (I tell myself) they help. I started these about 1 month ago and this has been my first "okay" week in awhile. I think that would make sense though because vitamins usually take some time before you reap the benefits I believe. I also started zyrtec/claratin 2 weeks ago and have been on clozenapam 1mg every morning since my relapse or "flare" last January. Also, I have been gluten free for approx. 3 months, and drink lotsa fluid.
  14. I have hyper form of pots and take up to 2 mg on a bad day when I am having lots of surges and panicky feelings. I automatically take 1 mg every a.m. when I am most symptomatic to help me maintain and able to get ready for work, and then .5 as needed depending. It helps me a lot. I am on no other meds other than odds and ends of vitamins and zyrtec/claratin. Don't know if I have mass cell disorder but I heard several speculations that mass cell disorders and pots are one and the same so the mass cell theory and benzo's make sense to me.
  15. I have had this before, it is not a long lasting symptom but rather I'll be doing something and I will suddenly realize or believe that I havn't been breathing and have to gasp for a breath. I had this long before diagnosed with POTS, It happened to me for about a month or so back in 2004ish and went away. Then it came back this year. It is random and occasional so not one of my biggest complaints right now but like most of the weird symptoms we experiance every day it is scary.
  16. I am interested:) keep me posted on when and where. I know of another person from central phoenix who has been going through hyperpots for years but doesn't really post on forums here but she see's Dr. G as well, I'll let her know as well.
  17. I don't so much have a problem with people as cars, they make me completely disoriented in traffic. I can't tell if they are moving or I am, even when I am at a standstill the motion of other cars around me makes me feel depersonalized or whatever the medical term for that is. I have always had a tendancy to "walk into people though" and occassionally I develop gait problems where one leg doesn't seem to keep up to another, on certain days only. I sometimes I have the sensation the floor is falling out from underneath me when both standing and sitting (although more frequently standing) I have no solutions or answers, am told that is normal with pots.
  18. This happens all the time to me but it is usually the combination of light and movement...that's why I don't drive however while I was driving I found sunglasses helped. I think horse blinders to block out peripheral stimuli would have helped too if that wouldn't have been dangerous LOL!
  19. Batik, not sure how else to measure what's going on, I usually just test it to keep record of what's going on with my body and when everything reads normal even though I am having an adrenal rush to know I am not "dying" helps. My 2 week heart holter earlier this year came back showing no irregularities except for high heart rate during the day. I never saw the irregular heartbeat signal until recently, so no clue! The only difference in my life since during the heart holter is now I am off keppra (for several months) and on vitamins. I guess I was just curious how "normal" an irregular hb could be with dysautonomia and pots.
  20. I just noticed my omron hrbp monitor which is not that old and has been very accurate when comparing to cardiologist and neuro's monitors has been detecting irrregular heartbeats. Has this happened to anyone, is it common and just part of pots. I never noticed it before. It's usually in the a.m. after I stand up when my hr and bp go way up.
  21. hmmm...that brings another question to my head but I will start a new topic so as not to confuse!
  22. to step in, when i had my first eeg the neuro didn't call me and tell me the results were abnormal untill his office called about 2 weeks later and said he wanted to see me in 1 week...then at that appt. he prescribed me keppra for siezures he thought I might be having (in which case I should have been told immediately in my opinion, but i figured no news was good news) and then, when I did see him he wanted to put me on bb immediately and told me to go to cardio.....never mentioned until that appt. that my hr was messed up as well as the brain waive slowing according to the 24 hr hart holter. so....my thoughts are always if your doc can't take 2 to 10 minutes to have a phone convo with you within 3 days time of request about what's going on or what they think is possibly going on then get a different doc and always, always demand copies of all info for tests you have done, not just the doc's interpretation I ran into that problem once. when i did go on a bb it made me sicker, not till the 2nd day, but def not cool with my body. so there you go, in my case. But, not hating on my first neuro, maybe he was trying to figure it out until I figured out on my own VIA INTERNET and getting a bp and hr monitor and then his answer was "I dont treat pots". There you go....But at least I figured out that's why I shake/tremor and have vision/hearing issues and anything stressful triggers me immensly...i think i spelled that wrong.
  23. that's cool... what brand? currently i go 4 days without washing my hair.
  24. from what i've been told you can demand answers to results regardless good or bad over the phone....you don't have to wait. It's your right. I would just call them (your doc) and demand them. If that helps with your peace of mind, ya know? They probably just want you to wait so you have to pay co-insurance to tell you the same thing they can tell you in 2 minutes on the phone. If your doc's office does not comply I would look for a new one. Been there, done that.
  25. that's interesting. I think maybe the ddog and something to do with oxygen and bloodflow to the brain? I actually got better last year when I started yoga again so I am going to start gently again. I got sick again after going on vacation (flying) and buying a house (stress) and stopped yoga so not sure if 1 thing or the combo made it come back. I noticed, and this was before I was dx's that when I started doing ddog I felt like I was going to fall on my head but that passed after I pushed thru a couple weeks of 45 min intermediate yoga. I was also doing it in the a.m. when my son was sleeping and now I know that is when we feel the worst. But afterwords, although I felt less stressed and whatever, I had a hard time in the shower afterwards and had to sit down to get ready for work....so shaky, couldn't hold up my hands to blow dry my hair, tunnel vision driving to work etc.
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