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Everything posted by Angela

  1. awesome interesting question...don't know if my input is helpful as the last time i saw my real dad was on a swingset age 4, he was a drunk and he told me to swing high to the sky, I think we flipped over the top but he held on to me. But I do know for a fact that i've never liked rollercosters, they make me green to the gills, I cannot do ring around the rosies with my son or swing. I seriously turn white as a ghost. My big sis has ms and she has no probs with roller costers though.
  2. that's cool....i wish my bf would dress me. I just put bobby pins in my hair anymore so you can't tell i havn't washed it and never bathe in the a.m. and throw on whatever I can find as far as clothes go....that's funny that people don't think i look like I feel (at work). I guess I don't stink at least, I know my boss, who used to be one of my best friends before I got sick would certtainly say something!
  3. firewatcher. what chinese herbs are you taking?
  4. and yes. i have been tested for ms several times, my big sis has it so that seems to be everyones first conclusion, sis is doing better than me right now!
  5. hey yeah, i see dr. saperstein who ALWAYS RETURNS PHONE CALLS and said has a friend with wife with eds pots. i have been tested for catecholamines, (24hr tests) but all my tests including the sweat test and you have to blow into that stupid tube were "unremarkable". but i was not symptomatic those days my eeg came back off and my first neuro told me there was no relation with my unexplained hr bp rainsing eupon standomg which i dont believe. whatever...i am going to start doing yoga again before i have to get on all these other drugs...at least my neuro is actually cool enough to order a dvd that teaches how to breath right. it i called COHERENENCE... i find it works but impossible to do all day with work ande such. but i fn hate the thought of taking pills..................!
  6. Issie, I have been in contact with Dr. Driscoll as well, she says she is working hard to get her work out there. She is also pretty uplifting so when I get an email from her it makes me feel better:) Hopefully she has the solution. That's what got you started on the diamox, correct? I believe I read that in one of your earlier posts plus I go on her website too, prettyill.com
  7. I had eeg showing left front lobe brain waive slowing, 1st neuro put me on 2000 mg keppra he thought it could be focal siezures however had 2 other neuros including epilepsy specialist from mayo review the eeg and they decided there was brain slowing but not siezure or epilepsy and took me off the keppra. I couldn't really say if the keppra helped with the pots.
  8. Yogini or anyone else...I used to do yoga before I got sick...want to slowly get back into it or pilates as you can do much of the exercises on the floor mat. Any excercise dvd's that you recommend? They would have to be mostly gentle and not standing up to start with.
  9. Awe, glad your work is so cool. My environment is a little diff.... my boss loved me before I got sick, and now its different, no one seems to understand that i can't function the same and cannot tolerate the stress well.
  10. I completely relate to your frustration. Once I get home from work which is hard enough to endure, i barely have enough energy to make my son dinner and just sit on the couch while he tries to convince me to play toddler activities. He always asks me "Mommy's sick?" I have 99% bad days....my boyfriend is embarrassed that I chose to ride a scooter at the grocery store. I feel so bad for myself but also sad that my son and boyfriend suffer too becuase of this. Really hard to stay positive....I'm not on all the meds you are because couldn't tolerate proponol (it made me feel stoned out of my mind!!!) even on half of a small dose I was prescribed. I mostly take vitamins, gluten free and drink lotsa fluid, try not to stand up too long. I would say in the last approx year I have had about max 2 weeks total of days I felt somewhat regular. But then there is the knowing that the bad feelings will come back always in the back of my head. Anyway, I drink a coctail in the evening and it makes me forget a little about feeling so icky. From what I read from Issie's posts she has been going through issues for a long time so if she can have hope then I guess I should work on thinking more positive too.
  11. Also Batik, from my readings and what I have been told hyperpots is much harder to treat than the other type of pots which is kind of why I directed the question to that subgroup but appreciate any answers from all Potsies. In general any Pots/dysautonomia *****. Why do you suspect mastocytosis? How come you don't have a Dx yet for the pots?
  12. yeah, i realized when I posted that there could be a bias because often when you feel better you forget about "support groups" such as this forum however at the same time I am sure there are plenty of people who are too sick to even get on a forum or not savvy enough to know about this forum and the internet alone so I take that into consideration. It was just a question. I presently do not drive unless it is to the corner store but I do work - a desk job so I am sitting most often but stressful....so not sure for how long. cannot tolerate proponol and do not want to try any other alpha beta blockers presently.
  13. AZ Girl, thanks. I do think the stress was a big factor and thats why doc. from the mayo clinic who specializes in diagnosing epiliepsy re-reviewed my eeg and said it wasn't siezures, just brain wave slowing. And, yes, that's the PNA is the neuro office I am going to now and I do like my doc. I did the ans testing which came back "unremarkable" but that was done when I was having a "good" day and the blood flow was normal (don't know if it matters that I was laying flat at the time) as well as the neuropathic testing so that was confusing but based off of all my hr and bp testing and systems my doc says (as well as 2 previous cardiologists and electrocards) everyone says I have hypo pots; just talked to my doc yesterday about testing my vitamin levels to see if any definciencies there. He says it is very hard to diagnose mcad so couldn't give me any advise there right now. Have you seen any improvements since you were first diagnosed?
  14. just stood up for 5 minutes, 168/117 hrate 113. Aaaghh.
  15. AZGirl, Not sure. Had my son 2009, had surgury for mastitis from breastfeeding 3 months later that antibiotics weren't fixing, then went through a s***ton of emotional stress, boyfriend fell off 30 foot lift, and couldn't walk for nearly a year so I had to take care of him and my son and work, plus his mom died that same weekend here at the Scottsdale Mayo Clinic age 60 (no one knew why) went on a diet to lose 20 lbs of babyweight (couldn't stand the weight gain since I have always been slim) But I have had some weird symptoms going back to 2004ish when I was going through a breakup. They went away after a month or two so I attributed it to stress but came back really bad some time 2010 ish I think it was...going to urgent care, er, er again, neuro who thought I was having siezures due to eeg so had me on 2000 mg keppra but once we figured out the tachy and high bp standing up that neuro said he doesn't treat POTS so since I can't afford the mayo, I went to a couple different electrophys cards and 2 more neuro's before finding a neuro that I like. He knows a little about POTS (well it seems like no one truly knows anything about Pots). They took me off keppra since they decided it wasn't true siezures or epilepsy, just brain wave slowing (possibly cuz not enough oxygen or blood to brain????)
  16. I was wondering how many people with hyperpots still work, if so what type of work? Seems like most don't. Also, how many can still drive?
  17. Dizzy especially when driving, try not to anymore. Even when just walking and once sitting I feel this weird sensation like the floor falls out from underneath me...you know like when you have a dream you are falling and you jolt awake but this is when I am already awake. I don't really have nausea just unbalanced and dizzy.
  18. Hey AZ Girl, you mentioned that Dr. Laura Ispas-Ponas is knowledgable about mcad so I tried to schedule an appt. but turns out that she only refers you to the mayo clinic, she doesn't treat it. My insurance doesn't contract with Mayo and out of pocket cost for consult is sooooo expensive. Any other ideas? Anyone? I live in Phoenix and dx is hyperpots
  19. The explanation I got was my adrenaline. It happens when I am sitting, standing and driving.
  20. Yep, I get convulsions....daily tremors but sometimes whole body shakes. 1/2 clozenapam helps and deep breathing, never tried the icepack thing maybe I'll give it a try.
  21. my highests have been 176/110 and 143/123.....lowest recorded 101/64....which is why I don't want to take clonodine, I don't want it to drop lower or have to take another med to compensate. my neuro did say he was concerned about consistant high bp and thinks I should go on meds but as long as I am sitting down or laying it is normal, 120's or 130's over 80's. I was reading on another topic that other's docs were saying high bp's are okay as long as they don't stay high for awhile, mine fluctuate when I stand up it goes up with my heart rate and then when I sit or lay it just flux's with my hr level until they both stable out. Any thoughts on why my doc wants me on bp meds while other's say it is fine? BTW, I find a vodka/gatorade coctail will bring it down to pretty normal range if it ever gets high when sitting:) Plus helps with the adrenal surges, overall calming effect and gets my mind off feeling like crap.
  22. I have crunching ripping sounds in my ears plus ringing but no stabbing pain.
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