DancingLight

i am using all of my hot air to blow ivan away! and tell him to go back out to sea and stay there! he-he. sorry, trying for a bit of levity in a miserable situation... i hope you are all okay. i really cannot imagine the stress of a hurricane, more or less 3 in a row this season! ugh. emily

hello all... i have FOLLOW-UP appt. scheduled with dr. grubb for Thursday September 23rd at 9:30 am. i know that the office does not like to mess with switching appts... but i thought i could post and let you know that i am going to call at 1:00 tomorrow (hopefully!) and cancel. so, if you want to call and see if you can get the cancelled appt... that is how i got in the first time...i lucked out getting in on a cancellation... let me know if any of you end up getting the appt. and or trying to get it! emily p.s. if you really want to appt. and can't call at that time tomorrow...we can work out a different time.

shanna, i am glad that you are seeking help...espcially since you don't feel a lot of support from friends and family. i did not at all mean to minimize the depression....just wanted to put out a little flag about the florinef. but, i too see a counselor and take an anti-depressant. counseling for me...well, i can't enough about it. it has been amazing amazing amazing. i am sooo lucky to have the same therapist for 6 years who has helped me to grow so much during this illness. also, helps me through the really rough times of course. it is a source of support worth seeking out! i don't know your financial or health ins. situation...but medical assistance actually pays for the therapist that i wanted! yeah! anyway, rambling. take care, emily

possibly he is suggestion pelvic congestion syndrome? that is definitely a possibility...but i don't know much about it or whether your pelvic symptoms match that or something else! did he order an mri of the pelvis to see if that is the case? i don't know about the bruises either...out bodies can really throw us for a loop, huh? i have some symptoms of pelvic congestion syndrome, but haven't yet had the mri. probably will sometime in the near future. it can cause a lot of pooling of blood and symptoms of orthostatic intolerance. emily

hello and welcome! i felt kind of weird at first with them too...but it passed...i don't know, maybe it's the increased blood flow to the brain! gives the sensation of having a headache?? i don't know! i am used to them now. at first i couldn't lie down with them on b/c i would feel like there was too much blood rushing to my head, but now it doesn't bother me...who knows...this illness is so weird! i wear pantyhose...i can't stand the thigh highs b/c my legs were so puffy, i would feel like i had a tournakit (man, i cannot spell tonight)...around my legs... the pantyhose don't really compress, the compression stops thigh high, but at least it is a little more gradual and for me probably adds a little support in the upper leg and abdomen... just my two cents! good luck. emily

hey morgan, thanks! i appreciate that clarification. i did know that tylenol in large doses consistently was toxic. i usually only take 1 or 2 eight hour gel tabs at bedtime....unless i am really needing some during the day, but not often...so i think i am okay! yes, i remember the benzo topic, and i agree with you. it is a tough one, but i agree about not scaring people...sometimes xanax is the only thing that helps me, but i don't take it all the time. we are all so different in what works. anyway, i took my first dose of clonidine tonight, and i only took .05 mg...just like you did. that is what he prescribed for the first week, and then up it to .1 mg if i tolerate it. i am very sleepy from it! so, off to bed! but otherwise, no problems yet! only been a couple of hours though! emily

merrill, YES! i am always hoping for an early frost too!!!! emily

gena, i am not sure about this...but my doctor saw singulair more as an "add-on" drug to the allegra... first, take allegra or other anti-histamine. then if that isn't enough, add allegra. that is what he had me do. i am not sure why though honestly. i guess the doctors are used to it being for asthma more than allergies? i don't know. but now it is approved for both uses...a good drug for people like my dad who have both conditions...just one drug instead of two. also, you could always try the nasal sprays...there are a lot of them out there. the newest one, astelin (i think i have that right) is supposed to be enough on its own and no allegra. my allergist suggested it, but i didn't mess with it yet. also, there are a zillion other nasal sprays...which do avoid so much of the systemic deal with putting meds into your body...but i haven't had much luck with them. however, LOTS of folks like them a lot and then you don't have to have something as systemic as a pill. i.e. flonase, rhinocort. hope this helps! emily

oops, nina...sorry about mixing singulair into that bunch. thanks for calling me on that. honestly, i was just in the "allergy mindset" and got sidetracked from just staying on antihistamines. i do take the singulair for allergies though and not asthma and really like it. (it was just approved later as okay for use for allergic rhinitis, after it was approved for asthma...i think i have that right) i agree in terms of not getting 24 hours out of claritin! and allegra by itself was not enough, hence the addition of singulair for me... emily

thanks you two! morgan, i glad to hear it is pretty benign! like you, i have had awful reactions to most meds. so, i was glad to hear that it didn't have any really nasty side effects. i feel like it is worth trying. most posts i have read seem to say that it might not have helped much but didn't have any awful side effects either. so, i think i will give it a shot. my system is going wild right now, andi hope it might calm it down a bit. morgan...do you remember a while back you said you thought tylenol was one of the worst drugs/most unsafe out there? i was just wondering if you could give more of a scoop on it? just curious. i always pick tylenol over advil or aleve... emily

ditto what nina said. i tolerate allegra really well and also singulair...probably the only meds i have ever taken without any side effects for me! like nina said, watch out for the D ones...those really messed me up. the decongestants make my heart race like crazy. i haven't taken claritin for a long time, but it is supposedly one of the more well-tolearted of the meds out there. allegra is my "drug of choice" though...but it is not over the counter... the good thing about the clairtin is that shouldn't make you drowsy, unlike benedryl or others...(althought jess said she can tolerate it...) so, as always...personal preference plays a role. hope you find some relief. this season is killer for me. ugh to rageweed! i cannot hardly be outside at all, and can't go without the allergy meds. emily

sue, yes, what a relief....thanks for sharing and updating us. it is good to have an answer and know that you don't have anything serious on top of everything else that is going on for you. emily

hello all!! i have searched on both this site and ndrf to find out other folks' experiences with this med...but didn't find too much. i was wondering if anyone else had tried it and what their experience was with it. also, what dose did/do you take. sorry if this thread has already been discussed, but i couldn't find it...if it was, please guide me to the earlier discussion on it! my pots doc has suggested that i take this drug b/c of my overactive sympathetic outflow. i know the basics of the med, etc. but wanted to hear personal stories... the drug seems a good fit for me b/c ANY activity regardless of whether it is good stress or bad stress, emotional, physical, social, causes me extreme responses of my heart pounding, sweating, etc. thanks all... emily PS so, i DO see that you took it morgan...but not too much other info... sorry for my brain fog.

i would like to know about the biofeedback too... i have done the jon kabat-zinn mindfulness approach...but sometimes, it just doesn't cut it... how does the biofeedback differ exactly. i haven't quite figured that all out yet... emily

jess, holy cow! that is crazy! i can't even imagine... i can't beleive all this as soon as you just move to florida! what does ethan think? is he scared or not quite old enough to figure out the danger? emily

shanna, yes, i agree with both previous posts....morgan is so right...how can you not get depressed? i see you are only 19...so of course, you are going to get down b/c you can't be a typical 19 year old! also, sometimes i have to realize that my mood (being down) is at least congruent with how i feel! it would be strange to be really extra chipper and feeling awful! (not to say that you can't keep a strong spirit, positive attitude, etc...) yes, it is good you recognized the depression...i agree with the posts on that too! i just really wanted to add one more thing...b/c i feel compelled to any time someone posts about this...you mentioned florinef... can you trace your mood changes directly back to that drug??? as many of us do, i struggle with the ups anddowns of chronic illness... however, when i took florinef, i became incredibly, terribly depressed, almost suicidal...i had never experience anything like it in my life. and it was different than just my usualy being down b/c i felt completely out of control of my body and mind, and completely not myself... so, i would definitely consider the florinef as a trigger first before adding an ssri into the mix... no one put the two together, and i finally said i had to go off of it. when i did, bam, it was almost instantaneous the mood improvement. it was so weird. if you read the teeny tiny print on this drug this can be a side effect. and later talked to at least one other person who had the same reaction. remember, we pots folks never seem to respond it "typical" ways! i just don't want anyone else to keep waiting it out onthat drug if they don't have to. i kept giving the drug more time, etc. to see if i would feel better on it! anyway, just my two cents... let us know what you find out and i am glad you found this site! emily

okay, oops... p.s. i don't pass out, and also, i don't have the swelling...so maybe i am not on the right track here...sorry...but your other symptoms of the tenderness to the touch, and the dizziness from moving your neck certain ways are exactly what i talked about with this doctor. is it worse after you've moved your neck more? better when you rest it?

hayley, wow! i have that too, and honestly i never paid a bit of attention to it. when i swallow my pills, boom, i get dizzy when i tilt my head back. and i am wearing a thermacare on it right now b/c i can't stand the pressure against it and it drives me bonkers. anyway, i do need to hit the sack, but i wanted to respond and say two things... 1. i agree about getting an mri to look for stenosis and chiari malformation. 2. i don't know if i would be alarmed at all... i just went to see a new ans doctor who suggested that i have MOVEMENT RESTRICTIONS...whcih can actually cause or contribute to POTS. i have been planning to post on this soon but just haven't felt up to it...but i will as soon as i can. so watch for that post and i will try to explain it all better. basically, though, you can find out if you have them through a simple PT exam, and then get PT to get rid of the restrictions. this is a first step before looking into more drastic measures such as surgery. hard to sum it up...but i am so excited about this new perspective on possible causes of POTS.... more later! just wanted you to know that it was so funny that you just posted on that, and i just had a doctor specifically ask me if i got symptoms when i moved my neck! emily

hey julie! i have not been good at keeping up with posts lately! oops! but i wanted to respond to your dr. grubb/eds post... as you know, i ended up going to hopkins to see a geneticist...and he did not agree with dr. grubb's diagnosis of eds for me... however, in your case you sound like you fit a lot of the criteria! i don't know what to say about the appt. with dr. grubb... it depends how many other ANS questions you have for him... really, he is not and expert in eds, he is an expert in the dysautonomia and he doesn't really do the complete exam for eds. it sounds to me like you really want to get the thorough, completel profile to screen for eds, not just type III but the other types too. am i reading your posts correctly on that? i felt so much better having gone to someone who really just focused on the eds aspect and getting a second opinion. this is NOT slander towards dr. grubb. there is no way he can be an expert in everything!!! this stuff is too darn complicated. the eds exam took a long time at hopkins. and i just don't know if dr. grubb has the time or expertise to go into the detail you would like. especially if you want the genetic testing. remember, there is NO genetic test yet available for eds III, only for the vascular and a coupel of other types. eds III is diagnosed cmpletely on physical exam and family history. also, another thing to weigh is that i don' tknow how much whether you have eds or not would affect dr. grubb's treatment approach for you. does this make any sense. i feel like i am in a grumpy mood right now, and although i am trying to write things out nicely, i wonder if i am sounding snappy and not even meaning to! hopefully, you know that is not at all how i intend this! that's just my rambling two cents for now...just whether or not it would really change anything from dr. grubb's perspective. also, since he hasn't been real open to it, maybe it is best to keep focused on ANS needs, and get the EDS stuff done somewhere else. it's a tough call, esp when you want drs. to look at the whole picture. but it is also so complicated! maybe if you went next time armed with the actual diagnosis of eds (if in fact you do have it) then you could discuss how it might affect treatment at another visit? just some thoughts. take care! i really am curious if you have eds, given your symptoms! either that or you are super hypermobile! emily p.s. did you buy your pill holders yet???? sorry, had to tease you.

i was just wondering about all of the florida folks on this board...jessica, etc.... are you okay???? let us know! i am thinking about you (and worrying a bit too!) sending good thoughts.... emily

cathy, i tried going off of effexor xr and also celexa (at different times) and i did not do well at all off of them...i found it very scary too that i was so dependent on them! especially b/c in general i am a pretty "up" person...but i just can't do without...which maybe is also a real sign of the messed up ANS for us, i don't know. although, i think these anti-depressants are a bit scary...as i feel like even though they say they aren't habit forming, etc. etc. people seem to have a hard time going off of them (okay, that is a generalization, but i just don't think we really know the long-term effects of beng on these meds.) still, i am just grateful they are available...i think about if i was alive a hundred years ago...we would have just been put to bed and wasted away or something...so we are lucky there is stuff to help! as for the TTT...i thought it was an absolute nightmare too! i was sooooo sick afterwards and it took a long time for me to recuperate! so, hang in there and nurture yourself! i can't believe you are moving on top of all of this! eek! i hope you have a little relief soon. just wanted you to know you are not alone in your struggles! emily

man, i just reread that post of mine and it is so inarticulate! oops! sorry! i am really spacier than i thought right now! sorry! emily

JLB, ditto what everyone else said so far. i am feeling like you are right now...hardly able to type! isn't it miserable! i feel so isolated from everyone! anyway, yes, it is so unpredictable which is the hardest part...as is the part not knowing when/how/if you will come out of the relapse! but, i always do...but like sue said, they can last months...that is not said to scare you, but to normalize your symptoms and what you are feeling. so that you know you are not alone in these crazy setbacks that can last a day or a few months! i also try to do the one day at a time thing, but it is hard. any time i do have a sudden setback...i do try to figure out if there is a particular trigger...emotional, new med, stressful event, etc. ...that might be the trigger. often there is a trigger...and often it is a new med. or for me...this time around physical therapy. it is worth looking to see if you can find a trigger. otherwise...sometimes the reason remains a mystery! all i can say, is to be understanding and nuture yourself through this time...know that it is not your fault. and know that you WILL have better days...it's just a matter of when. hang in there....i know it *****! i am sorry for the language there, but it just does! i can't think of any other way to put it! ugh! okay, brain fog. gotta get to bed. emily

gena, i always just have to wait it out...which stinks! i have had those episodes in which my system is so wired, i can't sleep and i just feel soooo miserable. i don't actually have the tachycardia anymore b/c i am on a beta-blocker, but i still have the sensation that my heart is going to leap out of my chest it is pounding so hard. sometimes it takes hours to wait it out....usually i have to lie still as much as i can. the only thing that sometimes works for me...is taking a bit of xanax...sometimes it can nip a spell in the bud but not always. i only take 1/4 to 1/2 of a .25 mg pill...so i am not worried about that being a problem in thelong run. i, too, do meditation, deep breathing, restful music, etc. i try being in the moment vs. distracting myself with tv or book on tape (tv makes me feel worse)...but usually nothing works. sorry...not helpful i know...but i just wanted you to know that i get those feelings to and have tried all the things you have too...the good thing is...at least you can usually wait them out. although there are a few times i thought it would never end! but it always does! emily

it's amazing how hindsight is 20/20 on these things huh? i was functioning until full-blown pots...but sometimes i wonder how! emily