k&ajsmom

I do. Ive dealt with it alllll my life. It really ***** when my friends or fam. go to the beach or to a festival or amusement park and i cant go. Ive just learned to do things in the afternoon and evenings. Im sorry i cant offer any advice because i dont know what to do about it myself, but just i understand how frustrating summertime can be when u cant do summertime things =p

Hi guys. I have a ttt tuesday..yuck but other than the expected dread of it im not sopposed to take any antihistimines for 2 days prior which means today and tommorow and of course day of. I already broke down and took a claritan cause i was vearing towards an asthma attack this am. Anyone had this issue what did u do? Im not asking for advice just ur experience with this. And if i do take it how will this effect my tilt results? Lil worried here, since im not to take albuterol either and the nurse just shrugged when i said ill have constant asthma attacks if i stop my meds. Also will taking antihistimines effect blood draw results, for example ANA and autoimmune stuff? Thx =)

Not to be discouraging but ive been "sick" on and off for 28 years and flared severely last october. So this time around ive been seriously looking for 9 months although my testing began when i was 2 years old. One thing ive learned u have to be ur own advocate and somehow balance ur emotional well being, and not be in "search" mode 24/7. Which i know is hard when all we want to do is feel normal...=/ Hang in there =)

Thx guys. I really hope this finds something. At this point i just need a name for the monster and pots just isnt enough of an explanation for me lol. Sue, im not sure exactly what all he is gonna look for with the mri but i do know he wants to rule out chiari, since ive had debilitating neck pain for 28 years, but not sure what else. Tachy, he is in norfolk, va and his office is located in the heart hospital here with there very own autonaumic lab...very exciting. Rich, can u tell me what the skin biopsys could be looking for? Im unfamiliar with them. Lol still learning...=) thx

So just an update, i saw Dr. Chemali and was pleasantly surprised how attentive he was to my concerns and warm he was. He has order a ton of tests, skin biopsy, a new ttt and auto tests, a glucose tolerance and 17 vials of blood to be drawn! He said if it doesnt find answers we will then do an mri of the neck and brain. He says he agrees i have pots but believes i have something else going on and this made me feel very validated after 31 years of sufferring. He says it will be about 6 weeks to get all tests back, some coming from Mayo after they are all done. I am very excited and very nervous about the testing. 17 vials is a lot of blood for us potsy peeps..and i loathe ttts but that said im finnally gonna have answers....yayayay! Thx everyone for ur support!

Thanks for ur response Naomi, Ive heard good and bad things so im nervous. I know its different for everyone so "crossing my fingers" i will keep u guys posted and if u ever decide to come see him hes only 20 minutes from me and i have a spare room for anyone that needs it =) even though i had to wait 7 months i know im very lucky he is so close (assuming things go well lol) thx again

Hi everyone. So ive been pushing back HARD against my symptoms. Ive been working part time but since my job is physically demanding its very hard and exhausts me and now i have a severe bundle of nerves pinched and every other symptom persists and im struggling to hang on...oy but anyways im finnally getting ready to see the autonaumic specialist/ neurologist that ive been waiting to see for seven months and im getting nervous. My primary care says last week dont get my hopes up and stop escaping my problems with my condition and i told him i cant handle the heat so his answer was turn off the ac and acclamate....well doc...my only problem that i cant handle is my condition ....? 29 years of this and im just sopposeed to suck it up..wish i would have thought of that already *eye roll* Anyways sorry for ranting now onto my question..lol what in the world do i ask this doctor? Ive already failed 10+ ttt's in my life ive been diagnosed ncs, and pots, so what are some key tests to ask for? Autoimmune? Mast cell? Eds? Ugh im over my head on whether a neurologist even does these things? Help please..i dont wanna blank stare when i get there after waiting seven months. =p im gonna list all my symptoms over the years and progression but i dont know what else to push at him?????!!!!! Thanks for any advice!

Agreed. My doctor wanted me to have one and gave me the paperwork. Just a simple form stating i have a cardiac autonaumic disease. I just haven't been able to muster the energy to sit at a dmv for hours to get it =( lol

Wow Naomi! This is awesome, i missed your first post..i have to gather some addresses but i def. Know a few doctors that found this condition interesting but were unaware of it. Should i pm u the addresses and names? And are u sending everywhere in the US. Im in virginia. =)

I use schiff digestive advantage intensive bowel support (bacillus coagulans with lysine) it is a quarter of the price of some of the other popular ones that ive tried and helps amazingly. I believe its lactose free as well. Ive been on them for two months and have seen a huge improvement. Things still arnt "fixed" but much more manageable. I did alot of research before choosing this one. I dont always do well with yogurt and it doesnt help me with the pots ibs

I totally understand western, im phobic of new meds....it takes me sometimes weeks to talk myself into tryin a new one...ugh lol

western, thats one I was on as a child that helped, for some reason doctor doesnt want me to take it now??? my mother just started it for fibro and headaches and said it helps her alot with sleep and wake refreshed. She did say ther first week she felt really jittery and ansty but it passed after that week.She also said it made her lose a little of her appetite at first but it leveled out after that and has had no gain or loss. she is hypotensive and has mvp but not pots. just thought id share =) Alos remeron is a tetracyclic and amyltriptiline (sp) is a trycyclic (sp) Im not sure exactly what the differences are other than remeron is more sedating because it also acts as a H-1 blocker. So hopefully urs wont make you groggy...=))

Well...thats seems to be the general concensus...dizzyness..and more low bp... yuck. Maybe ill see if can start on half a dose and then go from there... Sometimes i wonder about this doctor as great as he is...he prescribed me clonidine last time...and my bp was 85/ 50 when he wrote it...lol not wise doc...=/

Tachy, im relieved slighty im not the only one but ugh im sorry...its stinks =(

I was hoping it was the florinef, but im off it and everything else except my antihistimines and probiotics. Im starting a new med tommorow but nothing that could be causing it now. Im not even salt loading so...? Im clueless...its a horriable feeling. And if i strain to pick something up or bend over ..holy moly..its like my head and neck are gonna blow! Another lovely mystery i geuss...

This is wierd and i cant understand it. I have this strangling, like ive hung upside down feeling and my head has too much pressure in it and my neck feels the same way. Does anyone get this and have a clue what mechanisms could be causing it? It was worse on florinef there at the end but got a little better when i got off of florinef but its still there and very distressing. It occurs even when my bp is normal, well potsy normal lol thx =)

Anyone have experience with remeron for pots,insomnia and anxiety? Doc wants to try this one now just would like so feedback. =( little nervous, as usual lol i know its tetracyclic antidepressant but thats all i know. Eek

Bren, Same issues here, doctor thought poss. cushings beginning. I was having horriable sudden side effects. Swelling, headaches, hair falling out in clumps etc etc...and now its just wont stop. Ive been off a few weeks now and the strangling feeling is slighty better but thats it. I head to the specialist in a few weeks so I def will talk to him about the effects. very frustrating. I however never had any helpful benefits from the florinef so its a lose lose situation, never again.

I gained about 15. Whats strange is i recently tapered off my florinef due to some nasty side effects after almost a year on it, and now im gaining even more weight suddenly without any change in habits, if anything ive increased exercise. Ugh gotta love it =/

I get these too, although they have gotten a lot better since ive been off zoloft and florinef. Def agree with the above defiencey suggestions. I was very hypokalemic from the florinef on a very low dose (although I run low to begin with) Zoloft caused massive twitching for me. ur right, very frustrating whatever the cause. TC

oops Issie, your right. I should have worded that more appropriatly. Not looking for advice, more of others experiences with this drug, especially if you have low consistant bp and bradycardia at night. It sounds like this would be a great drug for high bp swings, for me though, I am not so sure. I still am chicken on even the lamictal...lol Thanks for sharing guys..take care

So saw my doctor today. He wants me on the lamictal as ive stated before. But now he wants me to add clonidine to my bedtime routine. He says its to help me fall asleep and stay asleep. Ive have low bp though. At the doctors it was 85/68. Ive read through some old posts and havent quite found others experiences similiar to mine so i thought id ask. Does anyone have low bp (no hyper pots here =) and tryed clonidine? Wouldnt it lower my already low bp and brady cardia at night? My resting hr at night can be in the fourtys and low 50"s....im nervous...help? Please?

Hi Naomi, I am not bi-polar, however my doctor has prescribed me Lamictil (sp) which is used for the treating bi-polar episodes. ( I do have massive anxiety and some depressive episodes thanks to my health) He has prescribed it to me for my Pots and explained it will help ans system calm down.and regulate some "probable overactive nuerotransmitters in my brain". My biggest fear is my heart! so thats the first question I asked. "will this effect arthymias in anyway??!!" he stated "no" ...now, Ive been too chicken to start it yet but I am going to soon. Have u ever tryed this med? -Sarah =)

Trice..thats exactly what im looking into. Im nervous though. Flexeril was one that would help the next day but has been taken away as it can exacerbate arthymias sooo im back to tylenol, which im sure as u know is like taking a sugar pill..ugh Miss traci, thats encourageing. My headaches come from neck, referred pain in my temples eyes and basically entire head, even my ears hurt. It makes me get "sick" and unable to see or move my jaw. Im glad to hear uve had success. Did u have any negative side effects from the optical nerve block? My mom has mvp but no other symptoms other than hypotnsion and she has recently started getting nerve blocks and said they are amazing!

Prayers for u and ur mom...hoping to hear positive news from u and know we all are here for u.