k&ajsmom

Oh bella that sounds painful..=( hope its well now. I am on 40 meqs a day now, was on 20. But my doctor today said the florinef has to stop and approved the weaning and said stop the k too about the same time. He is gonna have me doing weekly check ups too during this. Ugh ibs or whatever the bowel issues are ridiculous! But i think its the florinef reaking havoc. Ive had a two week horrendous headache and neck pressure even when my bp was low. And im losing so much hair! I tell ya, im losing it somedays lol take care sweetie!

Has anyone had any experience with cervicogenic headaches (chronic) and had any experience with nerve blocks? Or for that matter any other helpful treatment aside from nsaids and muscle relaxers. I can no longer take flexeril which was my onlly relief and am desperate for relief but dont wanna exacerbate any other symptoms of ans dysfunction. Thx =) hope all is well and everyone is hanging in there.

Bad, Its actually my mom who got lyme. She got bit and had the tyypical bullseye rash and was tested by her general physician. They took ddmer cause they thought i had a clot. I had fever, high bp (for me extremely high) chest and neck tightness etc. They then did a contract cat scan and was cleared. Im not sure why it was high but its the third high dimer theyve drawn. He said it could be from k being low and have muscle fatigue? ? ? I odnt know bout that..lol Alex..yes. that all sounds too familiar. Except the bp spikes which i had attributed to the low k levels. But maybe not? I def have every other symptom u mentiioned. I will def wean off the florinef, ive read on addisonian crisis and dont want to take a chance there what so ever! I will probaly be cautious like u and check with my doc and follow a similiar if not exact plan to taper...thx! I cant wait to get off of it, just nervous because i am usually so hypotensive ...eek Katybug, wow that sounds very scary, no wonder u went cold turkey! Ugh what a mess these meds can make in our already confused bodies lol Bella, Exactly what happened. They didnt check my legs just my lungs and heart but everytime i go in thats there first assumption...blood clot. Ugh so very glad there wasnt one. Thx everyone for ur feedback and experiences. They have helped me concrete my desicion and make a plan. Take care!

Thx so much bellamia, Its wonderful have u guys as friends who "get it". I honestly felt no effects good nor bad for the longest time till now. However being that i dont have adrenal issues u gotta wonder what effect this stuff has after awhile. Im def. Ready to give it a go without it. Ha..if only we could get the dogs to pitch in lol my dog is so old now id have to sign to her to get her to take those notes lol Thx again and hope ur doing well, this stuff def makes days long and tedious and somehow steals it away just as fast. Blah. (((Huggs))) ttake care =)))

Thx guys, So two cold turkey and one tapering. Those that went cold turkey how long were u on it? Alex, Im thinking thats what i may do. I just wasnt sure how to approach it. Im on 3000mgs of pottassium now, just doubled it from 1500mg. I was borderline when istarted florinef so i was put on 20meqs and after two months was still holding my numbers at 4.1 so i just dont understand the sudden drop. I have noticed in the last week my face and fingers are swelling. My eyes are especially swollen in the am. Im thinking this is the florinef. What side effects did u have from florinef if u dont mind me asking? Ive been on it since october at .1 with minor effects till now. Headaches getting worse, swelling, and im suspicous that some arthymias may be worsened by it. Im also having throat and neck pressure like crazy that ive never had before...ugh time to get off this stuff...=( its been helpful with bp but not at this price. How did u fare after stopping it commpletely? Thanks again oh and yes! It is so brutal on the tummy..i havent been able to eat hardly a bite since ive doubled it..blah

Hi guys, Its been a rough week. My daughter has pneumonia and autonaumic cardiac abnormality diagnosis this week, my mom totaled her car and then got lyme diagnosis and then we all got food posioning. Well everyone was getting well but me. I was feeling so weak and sick i decided to go to the er. Thank goodness i did cause my pottassium was low, 2.8 and ddimers wicked high. And this was not due to the d"s or vomiting cause i stopped those as soon as they started. All worked out inconclusive but the doc was clueless, though kind and understanding. He didnt even understand the concept of florinef for bp and that its dumps ur pottassium. Anyways i got. Some extra pottassium and half a bag of saline before they kicked me out...stingy lol Also my bp was higher than ever 150/ 85 for me this has never happened. Im thinking of getting off florinef even though bp came down im tired of pottassium loading and having close calls with it. How have u guys faired with taperiing? Of course ill talk to my doc but he is one to think cold turkey is ok..ugh thx for listening and take care

Thx guys for ur thoughts. Lemons by brady in terms of pulse i mean anywhere between 35 and 55 and it usually will occur in the evening / afternoon through the night. It will be prevalent for a day or so then will dissapate and i will have a more normal rhr of around 60. Tachy is always between 120 on a very good day and 170s on a bad and will be upon standing and consistant. I have had very few days without such high numbers. I will however have a day occassionally when brady and tachy will tagteam me on my feet. Standing one day doing nothing strenous..my hr was 58 then 5 minutes later 130 then 5 minutes later 80..i have very very few days like this but it was a rough one...lol

Household chores gets My hr to the max so im not exercising yet. But i can get to 180 vacuuming ...geesh

In my records it states i have persistant chronic clinical carbohydrate intolerance...huh? I thought this meant diabetes? Which i do not have. I have mild glucose elevation occasionally but thats it. Anyone know if if this can mean something else? Google just keeps taking me to diabetes. (These are old records from an autonaumic study in the 80's) so not urgent info. But just trying to understand where it all started...lol thx

LOL goodness...i meant buster...i must be hungry. Sorry about that =p

Thx butter for ur wonderful explanations , i truly appreciate the time u took and i feel at bit more at ease. Will def take this info to the docs with me as soon as i get to go ! Take care...=)

I agree with ur thinking that it may be a vasovagal response. Coughing /sneezing sends mine through the roof however if i take a deep breath in before i cough/sneeze it will drop my heartrate momentarily. Ive always assumed it was vasovagal. I must have sneezed 500 times yesterday..allergy attack..my heart was so confused...ugh and pulled every muscle lol i feel like i was at the gym. I hope ur feeling better soon, take care of urself =)

Thx christy..that makes me feel a little better. Im in the middle of getting my daughters heart checked out too. Shes been having what i think is ist and pvcs ...so much harder to worry about ur babies than urself...thx again

Unfortuantly racer i have not. This was taken in the er and after many months applying and waiting for health insurance i am still waiting. Im assured i will know in the next weeks (sigh) so until then im left speculating which is a dangerous monster to wrestle with. Im hoping to get to a good doctor soon but my bills from hospital stays and followups with gi and general physicians have crushed me. I hope it is a situation where it isnt significant but i just dont know "what" it is im dealing with. Thx for the response. =)

Ok soooo my ekg results are left artrial enlargement, right ventricular conduction delay and unifocal consistant pvc with normal sinus rythem What does this mean...google just scares me. Is it true the atrial enlargement result on ekg could be false? And what the heck is a conduction delay? Is this pots related or what??????? =p I had an echo and was never told results waiting for the records..of course i was never told about these reults either until i pulled the record...?? HELP? I have another ekg thats even more worrysome but havent gotten the record yet...these doctors stink at communicating...(sigh) thx guys

I get this feeling when i sleep on my stomach and my bed is super soft so i dont know why. I do have constant costochondritis that never stops popping and swelling but that doesnt explain why my entire ribcage is sore and hurts to breathe for a little bit..its def wierd. My doctor said i have multiple rib fractures in various stages of healing but not sure why or if this is the pain im feeling. fun fun fun lol

They had me drink magnesium and miralax..like issie said wrap up and get warm and brace urself ugh..lots and lots and lots of powerade or whatever hydrating drink u can have...just stay super hydrated and warm (if ur not hotblooded of course) i was terrified, a 31 yr old women who made the nurse literally hold my hand!! lol And after i woke up i wanted to go back under lol no issues with the procedure..that same day i had a contrast cat scan and the night before had a nucleur stress test....i was probaly glowing in the dark by the time i was done...lol but all went well and i enjoyed the nap!

Hi...anyone familiar with this? Thinking this maybe whats wrong with my tummy and etc.. not to give tmi =( but i have alot of bile d's (im blushing) by alot i mean all day everyday for 10 months and actually was my first symptom when this flared up again last year. I was wondering if this could flare pots/ncs symptoms in a predisposed person to autonaumic dysf? Can this be related to autoimmune issues? Ok im done embarrassing myself...=p thx ps ive eliminated gluten, dairy, sugar, corn, dyes all with no effect what so ever even water and fasting triggers this..thx again

I have a question i hope one of u smart cookies can answer for me..=) i am being driven to my breaking point with pvcs, pacs, afib, and now possibly v tach arthymias....sigh...i can deal with the tachy (sometimes) and the low bp (sometimes lol) and all the other endless symptoms but these arythmias are making me lose my grip. I know generally ablation is frowned upon for us causing a worsening in symptoms, but i was wondering if anyone knows why? What mechanics cause this? Im starting to consider ablation to lessen some of these events but i cant risk an even lower bp(im rarely over 90/70 even with florinef and compression or laying down im even lower 70/40) so im just wondering what exactly the negative effects are with these procedures...im constitantly in fear of these events and worry about vfib ....ugh so over this mess....thx guys =)

Thats what i was thinking Rama. I was diagnosed with auto dysf. /ncs as a toddler and my heart would go from 140 to 35ish and id hit the floor sometime during the change. That starved heart "throbbing" feeling u get is very familiar to me. I get it everytime i change posture and like u they say my heart is fine. Florinef has helped this feeling, not cured it and my arythmias are much worse =p always something. Good luck and keep fighting to get it figured out.

Hey ryan, im so sorry ur feeling bad. Fainting ***** =( curious...how was ur bp? Heartrate during and after these events? If u were even able to cognitively consider them at the time. Its hard for a leyman like me, to judge if ur heart looks enlarged. Its not strikingly large to my eye. But a better judge would be the blood tests mentioned above for hf. I hope ur doctor gave his opinion so ur not left speculating =( keep us posted. Ur symptoms are so similar to mine in someways im curious what they come up with. Take care and get some rest!

This is a drug i was recently encouraged to try, also known as elavil. I chose to try a more natural route after reading the same side effects as u. Made me very uneasy, end must justify the means for me...however, i was reading through my past medical records when i was a kid and this was a drug they first tried on me in combonation with florinef and few others. It helped my migranes and autonaumic dysfunction. I was only 6 ? At the time and tolerated it well from my records, so i hope it helps u. I may reconsider it if u have good results. Keep us posted and feel better soon =)

Lol.... I love this non-love letter. Thank u for posting, i really enjoyed reading this!

Thx yogini! Gonna give it a try, cant hurt at this point.=)

Same experience here. I only took it for a week whil in the hospital. Made my scalp "crawl" and almost exactly 2 hours after i took it id be so tired id just doze off no matter what i was doing. Didnt have the urinary urgency though. I can honestly say it didnt raise my bp at all, which is wierd but nothing does so either so they had me discontinue it. Id say ur experience seems positive and def talk to ur doctor but maybe after some time that fatigue will fade away? Good luck and im glad its helping a little. =)