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1pl8ump

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About 1pl8ump

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  • Birthday 05/14/1969

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    Richmond, VA

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  1. i have to say, my wife is a 'tweener (POTS & NCS, thus said by CCF as well as Dr. Grubb); she also has EDS- Hypermobility, Hemiplegic migraines. w/all that said, Dr. Heffez may be on vacation right now (summertime, you know how that goes). keep trying for him though. when he was @ hopkins, he is known as probably the top neuro in the country especially @ reading films. we live in VA, and i sent him my wife's films w/no questions asked. he is top notch. she also has small fiber neuropathy as tested by CCF. Dr. Kamal Chemali is in charge of that for her and she sees another neuro there for the migraines. if you want answers, you have to go to bigger facilities that deal w/this stuff day in and day out.
  2. my wife has hemiplegic migraines, hypermobility (EDS), she's in between POTS & NCS (per dr. grubb: shows symptoms of both) and small fiber neuropathy. she sees the dr. mark stillman @ cleveland clinic (he is head of the headache clinic). he put her on 1200 mg of neurontin (600 x 2/day) as well as magnesium oxide 400 mg and CO-Q 10 200 mg (both of these are over the counter supplements). the 3 combined are supposed to help w/the migraines although she still gets them when she has a syncopal episode. she also takes 120 mg inderal and 150 mg effexor (which is supposed to help w/headaches as well). i don't think she is having many side effects if any.
  3. i am a husband of a pots/ncs sufferer. i have done all the legwork for her since the syncopal episodes started back in '03. here are some suggestions for you to get where you are going. 1. first and foremost: DON'T EVER GIVE UP OR GIVE IN TO MEDIOCRITY & DON"T TAKE NO FROM ANY DR. OR SPECIALIST! --for those docs that don't know your issues, they all want to say it's "in your head" (i.e. all you pots people are crazy). 2. you should get cozy w/your gp/pcp. let him/her be your point person for all referrals and basically listen to you and your symptoms. you will be the one controlling the dance. even if that doc knows nothing of the subject, you both can learn more together. 3. get on the books w/the guru: dr. grubb. whatever the wait, it is worth it. the man is highly intelligent, yet one of the most compassionate docs you will ever be treated by. he will explain your body & its happenings to you better than you can explain it to him. 4. remember this about cardio's: they study the heart as an entire muscle; ep's study the circuitry of the heart. yet, your problem as well as others on this site are stuck in a space between a cardio problem and a neuro problem. 5. get rid of any doc that doesn't support you. utilize your insurance and find docs w/in your plan that may be listed on this site as well. get out of your city if you have to. the community pool of docs that truly understand your issues is very small throughout the country. 6. try to get a list of ALL of your symptoms and feelings. this will help narrow down specialists that deal w/those symptoms. word of mouth on this site works. 7. more than likely, all of these pots people have a genetic/hereditary mutation that has been triggered by some traumatuc event. the best you can do for now is try to live as comfortable as you can and keep searching for the right medicine that works for you. hopefully, this helps and find a good therapist. this stuff will get you down if you let it.
  4. just to add my 2 cents worth...my wife (the patient) and i just got back from an extensive visit w/none other but the guru, dr. grubb. going back for a moment, my wife was seen locally by a geneticist in aug '06. she clinically diagnosed her w/eds-hypermobility (which seems to be a genetic/hereditary issue). back to yesterday...dr. grubb said that my wife scored 8 of 9 on the beighton. he also said that most of the medical community no longer uses the term eds, since when it was originally used it also carried about 18 types and then sub-types as well. the problem was when the powers that be decided to change, they never consulted w/the geneticists, thereby making them mad. so, today, most doctors just use hypermobility instead of eds as a dx. eds really referred to type 1. it was also quite amazing to see how the hypermobility plays such a major role in my wife's pots/ncs condition. the dots can be closely connected.
  5. abraham lincoln had marfan's. i think it is related oversized, tall persons, large hands, etc. nia.nih.gov could give you more info. a strong expert in the field is hal dietz @ johns hopkins. the 2 are similar, but eds-hypermobility can only be diagnosed clinically through physical attributes & family pedigree. eds has more to do w/the collagen output of your body.
  6. dating back to may '05, my wife had 2 paralysis events and a 3rd in jul '06. during the '05 incidents, the so-called medical professionals were treating her for possible tia strokes (which we now know were actually hemiplegic migraines). anyhoo, unbeknownst to us @ the time, she was 1-2 months pregnant. they ended up putting her on self injections of heparin. well here we sit w/unused syringes in the package (approx. 50) and 2 boxes of heparin vials. does anyone have any suggestions on how to get rid of the stuff? i would hate to throw them away, but the pharmacy can't take them back. let me know what y'all think. thanks...
  7. i don't want to sound insensitive by any means, but all of you as well as my wife are caught in an economic tornado. i spoke w/a doc @ hopkins at length about the "local" yocals giving a rip about a rare disorder. his response was this, "unfortunately the time, money & resources are just not there anymore to delve into these types of cases. we can make more money seeing 5 patients w/ear infections than 1 pots/rare (fill in the blank). the days of wanting to find the root cause are gone." also, i have found for the last 4 years that you have to do your own legwork. the old addage "if you want something done right, you better do it yourself" definitely applies here. it seems like most, not all, doors get slammed because of the almighty dollar. so much for the hippocratic oath! where is HOUSE when you need him?!? my advice is to get at least one doc in your corner that is your go-to guy, point man, whatever you want to call him and just come out swinging. y'all won't get the answers you need unless you keep at these guys. end of soapbox...
  8. just 2 cents here: my wife and i have recently flown from richmond to cleveland clinic (approx. 1 hour) round trip in aug & nov and again in upcoming jan; she has pots, eds, & hemiplegic migraines. she took .5-1 whole dramamine (i think it was .5 the adult recommended dosage). she was out, asleep. i know boston to costa rica is slightly further, but don't let your mind play w/you either. think good thoughts and ask your doc if motion sickness or the valium would be suitable. don't pass up an opportunity today to say what might have been. you would kick yourself for not taking the FREE trip. go have fun. was that 2 cents worth?
  9. my wife is currently being treated @ cleveland clinic since the local quacks don't understand pots or hemiplegic migraines. anyhoo, dr. stillman increased her inderal & effexor and added magnesium oxide (400 mg) & coq10 (150 mg). w/in 1 week's time on this new dosing she seems to be doing much better than just 2 weeks ago. both supplements are said to help increase proper blood flow to the brain to decrease the headaches (migraines w/aura). a little pricy! does anyone know of an on-line vitamin house that offers them cheaper than going to the local pharmacy or wal-mart, target, etc...?
  10. i am actually self-diagnosing until we can get further medical proof, but i think w/all the fatigue and headache issues and the syncope more often than not, i think narcolepsy is present. are there any others that may have or think they have this dreaded syndrome? i looked it up @ the nih website and it looks pretty close. my wife can fall asleep in mid conversation for a few minutes to 30 minutes @ a time, come to and doesn't recollect what just happened. last week, a local geneticist clinically diagnosed her w/ehlers-danlos along w/affirming the pots. just add some other acronyms behind her name.
  11. my wife gets same side (L) hemiplegic migraines. we are due to see dr. stillman, headache specialist @ clev. clinic in 2nd week of nov. currently she takes 150mG effexor xr and 100mG topomax. both are said to be good headache medicines, but her symptoms seem to run together so often, we question as to their working ability at all. she will be tested while there for small fiber neuropathy. last week, we saw a local geneticist who clinically diagnosed her ehlers-danlos, hypermobility. it all has seemed to run together over the last 3.5 years. good luck w/relief.
  12. as far as i know he is the head of the dept. he has a good rep. i do all the legwork for my wife and we went to ccf about 2 weeks ago. originally scheduled w/shields for nov 30 and got on their cancellation list. they called and said his partner dr. chemali was available on oct. 20, so we took it. then they called, had someone back out for aug. 30, so we went. this guy was great. awesome bedside manner! he listens well to her history, asks a ton of questions and pieced the puzzle together. we are going back in nov. for 2 days of extensive testing and then go back a 3rd time when he gets the results. other than NIH (dec. 2003), we have never gotten as far as we did 2 weeks ago w/this guy. we also have an appt. w/dr. grubb in mar. '07. we are definitely keeping that as well. chemali also has her scheduled to see another neuro that is the headache specialist there, dr. stillman. he has a great rep. also.
  13. my wife is a pots/migraine sufferer. a couple of issues we have found out which could be helpful to those that have posted previously. she has had migraines for many years, but they seem to have gotten progressively worse during the past year. headaches are relative. there are no tests or radiology films that will show a headache. the doctors just go on your description of the pain you describe in your head. also, headaches seem to be very hereditary. my monster-in-law & sis-in-law both suffer as well. as far as pots & headaches, there seems to be no correllation, yet. it could be a blood flow problem to & from the brain. my wife's condition is known as migraine w/aura (where you see geometric shapes in your line of sight or black spots or stars). we have been to the cleveland clinic a few weeks ago and are scheduled to return in november. they have a headache specialist there named stillman. i have seen several potsy people post about him. she is going to go through 2 days of extensive testing for possible small fiber neuropathy in her feet. this could explain the manifestation of the syncope (which travels from south to north in your body). hope this gives some insight to you "guys".
  14. i can tell you from our recent experience trying to get in w/either low or sandroni. mayo requires your pcp to call first and then they need to see you records to see if you "qualify" for them to see you. they say it is easier to get in w/sandroni than low. i take care of all of my wife's appts., treatment research, etc. she feels like crap pretty much all of the time, as you well feel, therefore she doesn't have the energy to go through this. you probably have a better chance getting an appt. w/dr. grubb. we have one set for march '07. we're going to the cleveland clinic next week.
  15. let me just add a little note for dr. heffez. he came highly recommended by a peds cardio @ hopkins, dr. peter rowe. dr. rowe said dr. h was the best in the country @ reading head/neck films, bar none. i just sent him my wife's pics a few weeks ago and he wants to investigate a little further before making a jaunt to beer country from dear ol' virginny. the man obviously knows what he's doing.
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