dizzygirl Posted October 27, 2006 Report Share Posted October 27, 2006 hello all..i wanted to pop in real quick and say hey.. the past few days I took atrip out to Ohio.. cleveland where i saw Dr. Fouad... this was my 2nd time seeing dr. fouad.. and WOW! I was pleased with the visit.. dr. fouad was very patient with me and listened to my long list of concerns and answered my questions the best that she could..I did have to have another tilt test done.. and SUPRISE!!!! I still have pots! .. no seriously.. Um she showed me my results of my tilt.. and while my heart ratea ctually behaved itself.. (i was surpirised..) But my BP still dropped systolically and dystoligcally..she said that my numbers should not be dropping that much.. she said a few points is normal.. but 10.. and 20 and more is not..but hey we all know that allready..So anyways... she told me to be careful not to blame all of my "symptoms" on pots.. b/c it could be something else.She is having me come back on Nove 7th and she is going to have me have some autnomic testing done.. the blood vloume and some other stuff.. which is good...then i guess after she gets those results back we go from there.... then yesterday I saw dr.grubb and bev..and again they too where both great.. after seing grubb.. i (as wellas fouad) I felt like i am finally getting somewhere! my Bp's where wacky yesterday.. the first few times they took my BP they got no bottom number.. the nurse was like wow.. then they tried again and got something a bit more nomral for me.. this pots is nutsSo i talked with dr.g about my parlayse and all that stuff.. and he diagnosed me with(used to be called familia paralyse syndrome) periodic paralyse.. and i am going to start treatment for that.. and i have to work things out here at home to get the sleep paralyse ball going..and hope get a formal diagnosis and tretment going for that.. i see my pcp on moday so i will adress the whole ball of wax then..Um.. oh so he started me on a med.. and he knocked my clonidine back some.. b/c this new med..(diamox) will drop my pressure..more.. so i have to watch it.. he is starting me out on a low dose and i wil have to wrok my way up to 500-1000mg a day.. right now i'll be at 125 a day..he said that this will help level out my potassium levels...I also talked to him about my brain squeezing and pressure.. and he thinks that i am having edema.. swelling on my brain.. and that is what is causing my squeezing feeling and insane head pressure.. and its what is causing my eyes to bug out of my head and swell... kind of scary dont ya think?Um the med diamox.. used to be used as a dieretic.. now is used for periodic aparalyse.. but we will be kind of knocking 2 birds with one stone.. he said it will make me have to urinate more.. so hopefully it will flush out the excess...Um i kind of feel like i'm between a rock and a hard place.. in regaurds to IV fluids.. reason being b/c.. the IV fluids really helps my pots related symptoms.. But it is one of the triggers for the brain squeezing... i asked dr.grubb if i could do fluids more often and he was like i dont think so...!!!!!!! (yea i wass tupid enough to ask for more fluids! lol)But geting back to waht i was saying i feeel like im between a rock and a hard place.. b/c my body needs the fluid.. b/c i'm staying constantly at a level of dehydration... and it does help my pots.. BUT.. that brain squeezing OMG it is horrible..I feel validated after seeing dr. grubb... I now know why i have such intense pain and pressure in my brain.. and that it is not all in my "HEAD".. like that Er doc told me back in may when this first started!.. an ER doc at MUO mind you.. grrrrrrrr...Kind of scary though.. i mean i am getting answers.. finally .. and treatment finally.. but wow... now i'd like to know why all of a sudden Im getting edema on in my head around my brain...I guess those answers will come in the next month or so after i go to Long island..dr. g told me that some of the symptoms that i was describing sound like "Mountain Syndrome" any one ever heard of that? he said it is something that people who live or are in high altattudessuffer from.. but i am not in high altatudes i live on lake erie!.. what else?? Oh yeah I am going to start water theraphy again... Bev recommended this.. as nothing med wise helps with my pain.. so im going to do water therapy again.. to help keep things moving.. she said it will help with the pain.. and the arthritus.. and over all will help.. which i agree.. and am willing to try again..I'm going to try knee high compression hose.. and see if i can handle those verses the thigh high or waist high ones.. due to boine leg pain.. i can normally handle compression hose.. i;ll try though..I forgot quite a few thing i wanted to talk with dr. grubb about.. but i figure I got some other very important thing done there.. and the visit was great.. and i finally felt some hope.. along with validation.. and as ense of OMG!! someone is finally not blowing me off or passine the buck...even if i am a :complcated" chick!.. lol ...all my other meds are the same with the exception for my lower dose of clonidine.. bev wanted to put me on a seizure med for seizures.. but i was not to keen on that idea...It was kind of bitter sweet getting answers.. i feel relieved to get them.. and to be starting treatment.. yet at the same time it like holy COW!!! and i feel validated as well.. and so greatfull that i was not brushed off.. and not considered a crazy chica...but you all know how it goes.. the brain thing is going to interesting to figure out where it is coming from.. ill keep ya all updated on that..speaking of crazy chica's.. i saw a psychologist while in toledo..(this was my idead by the way).. who works with chronically ill patients.. potsy people.. and im glad that i made the appointment.. the psychologist was very good.. and again validating.. and gave me some pointers.. whic i needed.... i'm going to se this psychol;ogist when i go see dr grubb.. as you all know ive been having a harder time deal with things latlely.. and coping has not been reall good on my end.. s i gave it a whirl.. what a difference a good psychologist makes!.. one who gets it!but anyhoo.. i was very greatful for the excellent care i got on this trip..thought id share with you all Quote Link to comment Share on other sites More sharing options...
AJVDK Posted October 27, 2006 Report Share Posted October 27, 2006 Dizzy,I am glad you had a good apointment with Dr. Fouad. I really got alot out of my apointment last year when I was there. The blood vo lume test in Cleveland help alot for me with my doctor treating my illness. I hope when you get the results they can find a treatment that will help you!Talk to you later! Quote Link to comment Share on other sites More sharing options...
mlkral Posted October 27, 2006 Report Share Posted October 27, 2006 My husband sees doctor Fouad also. She is wonderful though we still can't figure out what is going on totally with my husband. We were there yesterday. She hooked him up with a portable heart monitor. She wants to see how his heart rate reacts in a normal life situation. Good luck to you! Dizzy,I am glad you had a good apointment with Dr. Fouad. I really got alot out of my apointment last year when I was there. The blood vo lume test in Cleveland help alot for me with my doctor treating my illness. I hope when you get the results they can find a treatment that will help you!Talk to you later!What does the blood volume test test for? Dr Fouad has not done this test on my husband yet. He may not be stable enough though. Quote Link to comment Share on other sites More sharing options...
Dizzy Dame Posted October 28, 2006 Report Share Posted October 28, 2006 (((((BIG HUGS))))) Linda. I'm glad you're FINALLY starting to get some answers, and hopefully soon you'll get more. I'm sure you're exhausted from your trip, so I hope you get lots of rest!-Lauren Quote Link to comment Share on other sites More sharing options...
marnian Posted October 28, 2006 Report Share Posted October 28, 2006 I've been on Diamox before (to reduce cerebrospinal fluid that was causing headaches and pressure behind my eyes). There are a few weird side effects that a lot of doctors forget to mention. Obviously, everyone has their own experiences, but a lot of people feel their hands/feet tingle and even more people notice carbonated beverages taste really funny. Just a heads up! Quote Link to comment Share on other sites More sharing options...
corina Posted October 28, 2006 Report Share Posted October 28, 2006 hey dizzy!i am so glad that your toledo visit has taken you somewhere! you finally have some answers AND hope! i am happy for you!!!!corina Quote Link to comment Share on other sites More sharing options...
JaneEyre9 Posted October 28, 2006 Report Share Posted October 28, 2006 Hey Dizzy,I haven't been posting much, but i've been skimming the posts...I'm so glad you got some validation and new treatment options. I know you've been suffering for a long time with all of these symptoms that don't seem to go together. Good luck with your upcoming testing and new med!Kristen Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted October 28, 2006 Author Report Share Posted October 28, 2006 thanks everyone for your support! Marnian.. may i ask waht kind of weird side-effects?? dr. g told me that the side effects "shouldnt" hopefully really bother me... Quote Link to comment Share on other sites More sharing options...
Sunfish Posted October 29, 2006 Report Share Posted October 29, 2006 linda -i'm glad that all in all you had a good and productive trip. i hope that the new treatment plans bring at least some relief and that you continue to get more answers (and possible/probable solutions!) in the weeks & months to come. melissa Quote Link to comment Share on other sites More sharing options...
Ernie Posted October 29, 2006 Report Share Posted October 29, 2006 Hi Linda,I am glad you had a positive visit with Dr Grubb. I hope the Diamox helps you.Take care Quote Link to comment Share on other sites More sharing options...
DancingLight Posted October 29, 2006 Report Share Posted October 29, 2006 Hey Dizzy!Thanks for checking in. I know you've been going through an extra-rough patch lately. I am glad you got to get two opinions and also more options of things to try. Marnian's descriptions of side effects from the Diamox remind me of the side effects people talked about from Topamax--specifically the funny tasting soda. Hmmm.....Hope some of the meds/ideas will work for you, and most importantly bring you some much needed relief from your symtpoms.Emily Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted October 30, 2006 Author Report Share Posted October 30, 2006 (((((((((whistling))))))))))))))))))) I started diamox today and holy crud.. i havent been able to get my buns up off the bed or couch hardly at all taday...I tireid checking my BP several times and it would not register on my BP machine.. so im going to call and see if i can split the pill in halves or quarters and work my way up to the low dose..it made me quite hypotensive today..do any of you who have been on diamox.. notice that it really really fatigues your muscles?.. makes the bod feel like silly puddy that has cement weights attacked to it? Just curious as the past few weeks I have REAALLY pushed myself.. and im not sure if it now catching up to me.. or if im now starting to crash from my tilt.. or if its just the meds adjusting.. or all 3..thanks for the heads up on the fizzy pop.. while i had no problems drinking it...no funny taste or anything.. burping it up was a COMPLETELY different story.. EWWWWWWWWW is all i have to say on that note.. how gross...for those of you who has taken it.. i know you know what i mean!! YUCKY!!!!!!!no more grape fanta for the dizz! backto bed i go... Quote Link to comment Share on other sites More sharing options...
ariella Posted October 30, 2006 Report Share Posted October 30, 2006 Dizzy,Have you had you potassium levels checked? I just looked at a link about diamox, and it said that it can cause real problems if your potassuium levels are low.You may want to check online about other possible drug interactions, from experience I wouldn't rely on my doctor to remember what I am taking.Be safe,Ariella Quote Link to comment Share on other sites More sharing options...
Ernie Posted October 30, 2006 Report Share Posted October 30, 2006 Hi,I would hold the Diamox until I get back to baseline. Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted October 30, 2006 Author Report Share Posted October 30, 2006 yeah.. my doc said that this would help level out my potassium levels... I'm going to give him a cal here shortly.. But all i know is that med was rough yesterday.. I'm afraid to take it again!i have an appointment with my pcp this afternoon.... So i will ask him for a lab slip to check out the potassium levels...I so hope that i can adjust to this med.. Quote Link to comment Share on other sites More sharing options...
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