Mrs. Glass

Oh yes sounds very familiar. Most of the time I can tell when my b/p drops, but sometimes I will take it and it is low, but not drastically, it is very frustrating, because just when you think that you can tell when your b/p drops then this stupid thing throws you for a loop. I usually dont tell anyone either. I sometimes think that I am making it up. So I just keep my mouth shut. My friends are calling me less and less. I dont know if they just feel uncomfortable around me, or if life is just getting more tied up, but I do know that I get very lonely. I had decided not to call them, if they want to talk to me, then they can call. I guess that is probably the wrong attitude to have, but I dont want to impose on them any more. I try not to tell my husband or family because I dont want them to worry any more than they already do. You are not alone in this I dont know if anyone else has this problem, but I know that I do. Hope you have a symptom free day. Mrs. Glass

Had the wierdest thing happen this am. Today is my grocery day, so I filled up on extra salt added gateraid, ate breakfast and as soon as I dropped off kids at school and went shopping. After about 1 1/2 hrs (I love Marc's and it's great to get out!) All the sudden it hit me, felt like I was going to check out. Hurried up and paid went out to the car to take my BP (I carry one of the wrist ones with me in my purse) it was ok 107/75. Does anyone else have this happen. I've been having this happen and it's frustraiting. It's like all the sudden feeling like I need to go lie down. It's the same kinda feeling I get when my BP drops. I ate a donut in the car and drank more gateraide and slowly drove the 2 miles home, which felt like 10 cuz I was scared. When I got home I got this heart flutter feeling and it felt like I couldn't breath for a split second. Another wierd symptom to scare the bejebbes out of me!!! Anyone have any of these things happen? It has been such a blessing to have a place to go a vent my fears and frustraitions. And knowing others can relate and have been there. Sometimes friends and family mean well but I can tell they get tired of it. I don't even feel comfortable bringing it up except to hubby and kids. And it really bothers me sometimes cuz I sit and listen for what seems forever when they go on and on about thier lives and problems.

Kim

I went Wed. and had my MRIs and it took an hour and a half. The problem is when it was over, I felt horrible. My eyes were very blood shot, and any light would hurt my eyes and it seemed like the littlest of sounds just set my symptoms off. Even the sound of the fan. By the time that I got home, all I could do was to go into my bedroom and lie down and close the door to make it as dark as possible and try to drown out the noise. I felt horrible for the rest of the day. Today I go for my EMG, and I hope that it doesnt do the same thing. My Neurologist is actually coming in on a Saturday just to see me and to do the EMG, because he could not see me on the day of my MRIs. That is dedication. I think that I will keep this Doctor. He actually seems very concerned with my medical problems, and seems to want to get to the bottom of this. Well if anyone has bad reactions to an MRI please let me know, that way I wont think that I am just weird or something. Mrs Glass

Sorry that I have not responded until now. Yes I did have a few problems with general anasthesia (sp?) In August I had general and I was very nauseaous for a solid week, and my b/p was lower for a time, the sluggishness lasted for almost 2 weeks. The 25th I had back surgery, and it was almost cancelled due to my low b/p, but the anasthesiologist put in an A line and kept my b/p perfect. I am still recovering from surgery. My b/p was very very low after surgery, but they kept pushing IVs and by the time that I was released it was still low but not dangerous, and also I have terrible problems with constipation. It seems that my bowels just totally shut down and nothing is going to make them move. So I have to have enemas just to keep from being poisoned. But I think it all depends on the person because I have read where some people dont have any complications at all. Boy are they lucky! Good luck on your surgeries. Im sure you will do fine. Mrs Glass

Hi just wondering if anyone has had general anesthesia and had complications from it or surgery itself. I may be having surgery soon and was just wondering how POTS patients handle being "put to sleep".

One of my main concerns is BP and HR of course but not only during surgery but for a day or two after. Does it make the palpitations and BP worse for a few days?

I know I will need fluids and probably closer monitoring but what type? And is doing it in a dr's office safe for us????

In case you are wondering what type of surgery-vaginal(hopefully) hysterectomy, wisdom teeth cut out and extracted and later on breast augmentation.

Hope all is doing well, haven't been on in a while.

Thanks,

Danelle

Welcome Sue New sorry I havent responded until now. Sorry you have to join us also but you have come to the right place for big shoulders and support. There is a great bunch of people here. Talk to you soon Mrs. Glass aka VAnessa

I didnt know that you were not supposed to just stop the florinef! When my cardiologist took me off of it he just stopped it suddenly. It scares me now that maybe he doesnt know what he is doing. Any advice out there? Mrs. Glass aka Vanessa

That's a question for your doctor. Florinef typically isn't something one should just stop and start--one has to build up a blood level over a period of days. Also, stopping suddenly is not recommended, so if it's not a good match for you, you still have to wean off over a period of days/weeks.

for a medication that's easier that way, you might want to ask your doctor about proamatine (midodrine). Midodrine is short acting--only 4 hours usually, so you'll know right away if it helps or not...and if not, it's out of your system at the end of 4 hours ... and if it helps, you can take another until it gets close to bedtime.

Nina

I was on Celexa for depression and anxiety didnt help at all. Never heard of it for breathing problems, but then docs do use meds for different things. I didnt have any bad side affects from it though. Mrs. Glass

As per title!

My specialist is happy for me to trial this. It's meant to help with the temporary stopping breathing thing at night apparently. However, as people with M.E have trouble with anti-depressants not sure if it'll be for me.

Anyone know much about this drug/tried it, does it help other POTs symptoms?

Hi Kim, sorry I havent responded before now ,had to have surgery on my back, and this is the first day that I have been able to sit at the computer for any length of time. You have come to the right place for support, understanding, and maybe some answers. Sorry that you had to join our little group here but since you do welcome! I am relatively new to this site and it has helped me a lot. Some times a person just has to vent to people who know exactly what they are going through. All of the symptoms that we go through on a day to day basis, sometimes is almost more than we can bare, but at least we have the support of this lovely group. Hope you get some answers to your questions. Mrs. Glass aka Vanessa

Well I go today to get my first MRI on my head. For one thing I do not like to be in that tunnel of a machine, but at least it is not painful. The only problem is I have to travel so far to get it. My Neurologist is 80 miles away, and with just having back surgery, it is not going to be fun. Although they did reschedule my EMG for Saturday. He is going to come in on a Saturday just to do it, so it will not be so hard on me. He did not want me to have to be there for so long on one day. I think that I am going to like this Doc. I was going to do a little Christmas shopping while there, but with my back, I dont think that I will be able to. Maybe on Saturday. There is only one store that I like that does not have wheelchairs so I wont go there. Well wish me luck, hope the MRI shows why all of this is going on, but I hope that it is not too bad. Mrs. Glass aka Vanessa

Sounds like your body is putting you through the ringer. Hang in there hope you get rid of that horrible migraine. Wish my magic wand wasnt broken, then none of us would be suffering with this stupid illness. Heres a great big HUG just for you. Mrs. Glass aka Vanessa

Oh yes anxiety is a common factor in my life. At first the docs thought that was all that was wrong with me, but the meds did not work. I too see a Psychologist just to help me to deal with being sick all of the time. She is great, she is teaching me relaxation techniques to help overcome some of the anxiety. It helps some but does not take it all away. Mrs. Glass aka Vanessa

Hi everyone,

After reading through alot of the site and posts and signatures I noticed alot of anxiety sufferers?

I too have been suffering since last year with anxiety. It sometimes seems to come out of nowhere! Sometimes for days, then just as it came, subsides. Is this common? I have mentioned to Dr and she doesn't think it has anything to do with each other. I am seeing a Pschologist trying to deal with it and it has helped knowing the anxiety won't hurt me, it's just VERY uncomfortable. It's sometimes like an adrenaline rush feeling, like someone just scared me. I am afraid of this more than the feeling of I might faint. Anyone else with similiar symptoms.

Kim

I always have problems sleeping. I am on ambien, but doesnt help much. I only sleep about 4 hours a night. If I dont take the ambien then I dont sleep at all. About once every two weeks I will sleep about 11 hours but I have trouble breathing while sleeping. I will wake up gasping for air. I am also afraid to sleep, maybe that is why I dont sleep much, but it gets very tiring! My husband raised the head of our bed, and that seems to help with my gasping for air some. It is a lot better than before, also if it is too warm in the bedroom, I cant breathe either. Which is hard to control the temperature as I am either hot or cold, and my poor husband is always freezing in the house. Mrs. Glass aka Vanessa

Hi all.

Last night i kept waking up and every time i woke up my HR would feel like its dropping. Every time i move postions im semi awake and can feel my HR slow down. Sleeping is becoming a problem and latley i fear sleep. Im aslo having very bad wind problems, the ammount of air that gets in my stomach amazes me. I think this happens though when im paranoid, i tend to take weired breaths and swallow alot of air.

But does anyone have this problem when sleeping and mooving positions whilst sleeping?

Both of mine drop, it has been so low even lying down that the machine would not register it, but I still did not pass out. Probably would have if I would have set up. My b/p is all over the board only thing is I have had such low blood pressure for so long. Any spike in my b/p causes me to have mini strokes so this is quite a delima for my docs. I have to monitor my b/p very closely. But I have been going at it for so long that I can tell just by how I feel if my b/p is high or low. Mrs. Glass aka Vanessa

Are all orthostatic hypotensions in the same catagory? Do they all fall under Dysautonomia? I've got so many questions....

Thanks

Kim

Well the surgery is finally over, and boy am I glad. It was almost postponed due to my low b/p, but my surgeon explained to the anesthesiologist (sp?) that the docs could not regulate my b/p until he fixed my back. So he finallly agreed. I was really scared, but I made it through it. I lost more blood then usual, but I came through ok. I am having a really bad time with my b/p right now as it is low and when I stand up it really drops to the point that I almost pass out everytime. They had to put in an a-line to control my b/p and the surgeon said that the anasthesiologist earned his money that day, but he kept my b/p perfect, He could not do it ortho so I have a 4 inch scar on my back, and it is very hard to get around. I may be able to sit here to type out this but I know that will be all. I am hoping that I will be able to keep my appt with the neuro on 30th. as I do not want to delay this any longer. Plus I have met my out of pocket expenses for the year and my insurance will pay all of it. So I will just have to see. I will wait a couple of days before I start to set at the computer again for any length of time. Talk to you all later. Mrs. Glass aka Vanessa

Many of the symptoms you have described are very real to me also. Although I did not know that it was called flares. What I am going through the worse right now is sounds. Any sudden sound will set my body off. I hate it! The telephone rings, or my grandsons are a little too loud, even my little dog yapping will set me into a tailspin. So everyone is trying to keep it as quiet as possible for me, which I hate even more. Dont know how long this one will last hope when it is over my body will give me a little break before it starts something else. So here is a list of the ones for me. Vision, dizzy, nausea, tingling sensation, insomnia(even with ambien cant sleep),twitching, gooseflesh, low b/p, also every time I move my head or my eyes. Hope this helps you some. Vanessa

Who here has flares? I would like to know if anyone here has flares and what happens during those flares. Any nuerological, muscular, cardio, emotion, sensory-anything. I know most everyone has this every day, but need to know about the ones with waxing & waning flares and the symptoms. I'll go first.

I'll get tachy but not an adrenaline rush for a couple of days

My vision will get very sensitive

I'll get dizzy & nauseaous

My skin will burn

I get a creepy crawly feeling or tingling sensation over my body

I get sleep paralysis

I get insomnia

My legs will turn purple and blotchy

I will have an adrenaline rush

I have horrible nightmares

I will twitch in my arms and legs

I get gooseflesh

My bp will get very low

Does this sound familiar to anyone and does anyone have this same pattern?

thanks guys!

bamagirl

I have to wear the pantyhose type due to clotting problems. I hate them but they keep the blood from pooling in my legs and abdomen. My b/p is higher when I wear them sometimes. My docs told me that I had to wear them for the rest of my life, that I could not be without them. I do not wear them at night though. My b/p always goes up when I lay down, so they do not want them on me at night. Now on days that I am bedridden I am to wear them all the time. Sounds like a contradiction, but I also have problems with clots. Just one more thing upon all of the other things. So I wear them even if I do not like them. I just figure that I do not have a choice, but a walmart you can order colored ones where you do not have to wear the ugly white ones. The strength that I have to wear is 30-40. I have to get some more as I have lost so much weight and muscle mass that the ones that I have are too large now. That will give me 3 different sizes now. I will just keep them in case meds make me gain weight. Hope you find the answer that you are looking for. Vanessa

I'm wondering if the body adapts to having compression stockings so that if you take them off, your symptoms are worse than before you started wearing them. I don't know if this makes sense. I do really well without compression stockings. My doctor wants me to try them anyway. What if I wear them and my body gets used to wearing them and then can't cope without them?

Does that make sense at all?

I do not think that you are being difficult or noncompliant. You are just wanting a little normalcy to your not so normal life. I can truly understand that. I know the frustrations of the meds verses quality of life issue. As I am sure most everyone here does. Right now our quality of life stinks! All you are asking for is just one little day, thats all. You know how you feel, but it is all up to you. My cardio told me to start back on the midodrine and my neuro told me not to , so what is a person supposed to do. I am going with my neuro on this. since my cardio is being a total waste of space right now. I wish that I could wave my magic wand and tell you what to do, but my wand is broken. Go by your instincts is the only advice that I have for you. Follow your gut feeling, and it will not lead you the wrong way(at least that is what my mom always told me). Hope you have a nice holiday. Wish I could help you. I am sending you a ((BIG HUG)) from me to you. Vanessa

I know many of you can relate. I'm feeling frustrated and just needed to vent.

I tried a new med and it worked okay for lowering my heart rate but I ended up being allergic to it.

I now have a new med to try which wasn't our first choice of meds this go round because it made me incredibly groggy during the med trial at Vandy & I didn't have as good of a heart rate response to it. I've tried dozens and dozens of meds and combo's of meds and I get frustrated with the process.

This probably sounds horrible but I got the new med last night and I decided to wait until Friday to start it. I am so sick of being sick so much of the time and every holiday. I have a couple coming over for dinner (I'm keeping it simple and light) and I just want to have one good day. I know if I take the medicine today or tomorrow I would have to cancel the dinner. Am I wrong for wanting the "social day" over starting the new med right away? I feel like if I ever explain something of this nature to my cardiologist that he looks at me as if I'm being difficult or non-compliant. That really is not the case.

I'm really frustrated by trying to get a Dr to understand that meds don't always make your quality of life better and sometimes I opt for the quality of life and delay the meds.

How do I get people to understand meds vs. total quality of life issues? Or am I wrong and should I be focusing on taking the medication and adjusting to the fact that maybe the med will keep my heart and BP healthier (thus maybe prolonging my life) and settle for a longer life over a more satisfied life?

Thanks for listening!!!

I just lie down, not being treated for tachy as of yet. I dont think my docs know how to treat me. It is so frustrating. Mine has gone up into the 140's also. I record my b/p and pulse twice a day,and sometimes more. As per my cardios request, have been doing this for months now, and he has not looked at it once. How is he going to know what is going on at home if he doesnt take the time to even open up my book. Frustrating ! I hope you can find out what works for you. If it works let me know because I will try anything at this point to get some relief. Happy Thanksgiving. Vanessa

After going through a bad bout of tachy and trying to switch to toprol xl, I went back to atenelol. For a good week my heartrate was in the 70's resting and maybe the 80-90's getting up. Now today, my hr was 80's when I got up and proceed to do what it wanted. Standing and moving went to 130-140's. Sitting it sat at about 110 for a long time. At one point it went to 140 sitting and then started to go back down. (I took a 12.5mg after this started)guess it finally started to kick in. I have been taking 12.5 of the atenelol in the a.m.

Does anyone's chest get tight while they are tachy? You stay tachy all day or how long do you stay tachy? How do you deal with this, do you still go out and try to do normal activities? I get the chillls and shakes with it so it is hard to go out with this. My readings show sinus tachy, and I have even tried certain manuvers to slow it but I guess because it is not a certain SVT it does not work.

I HATE this, I HATE this, I HATE this! You think you may finally have gotten an edge on this business and it kicks you right back in the teeth to the floor.

Hi, have nausea all the time, no vomiting yet. sometime wish I could just to get it over with. I had my gallbladder checked said it was fine. My stomach bloats and hurts if I put anything in it. Hope it doesnt get any worse. Hope you find some answers at your new doc. Yes it is very hard to be sick all of the time. Sending big hugs your way. Vanessa

Hi. I can't remember the last time I did not feel nauseas and had vomitted on occasion. Now it is to the point that I am vomiting every day, even if I don't eat. I started drinking ensure a few weeks ago to get some nutrition and I couldn't even get that down yesterday. Just the thought of food and especially the smell send me to the bathroom. All my symptoms just keep getting more and more progressive. I don't know if there will ever be any relief. It is very hard to be sick every day of your life. And not know from day to day what you will have to deal with. I have been officially diagnosed with POTS but am being tested for other conditions due to unexplained symptoms. Believe it or not, even with the lack of food and vomiting, I still gain weight. They thought I had Cushings but because I am covered in dark purple stretch marks but they ruled that out. Plus I have a very offensive odor. I am going to see another Dr. on December 8th. I can't believe how many doctors I have been to since all this started last December! Any comments will sure help. Please let me know if you have a vomiting problem constantly! Thanks for all the support!

I leave for El Paso today for surgery first thing in the morning. I am very scared and nervous about it. I got really sick yesterday. I think that I tried to do too much. My daughter is here preparing our Thanksgiving feast, and I kept trying to help her, but would get so dizzy that I would have to lie down, and then it was time to make the cobbler with my oldest grandson, and I barely made it through the whole ordeal. I got it in the oven and had to tell my daughter to take over and layed down and literally passed out. When I came to I was pouring sweat, and I could not even take a shower. because one of the main water lines in the street had broken the day before which in turn busted the sewer line and the city came by and told us that our water was contaminated and they do not know when it will be safe again. Glad that I have to get a motel room just so I can have a shower before my surgery. Even if it is a cool one. I so long for a long hot bath. It is extra hard for me today, woke up crying. I was hoping and praying that my whole family could be here for the holidays, but my Son will not be able to be here. I just wish all of this could just be over and done with and that my life was back to normal again. But it looks like that I have got to accept what life has dealt me if I like it or not. Hopefully my b/p will be high enough for them to do the surgery. One good thing is it is always a little higher laying down. My surgeon knows about my medical history and said that if I do not have surgery that it is only going to get worse. I guess that I am just ranting out of fear, I will post and let everyone know how it all went when I am able to sit up at the computer again.

I am here to wish everyone a very HAPPY THANKSGIVING and all a symptom free day. HAPPY THANKSGIVING Talk to you all soon. Vanessa

Oh yes very common with me, When I had an MRI on my back the tech had to keep telling me not to hold my breath. I was not holding it just forgot to breathe. Most of the time I feel like I am not getting enough oxygen, mostly when b/p is very low. If this is something new with you I would talk to my doc about it. Hope you get some answers. Vanessa

I keep getting these weird feelings like my breathe is not processing right and when I deep breathe thinking I am hyperventilating it gets worse does this happen to anyone. I don't eant to go to ER.

Sorry I am late on posting, sick all day yesterday. Yes I did get a flu shot, and a pneumonia shot also. No side affects just sore arms. My PCP said that it was necessary as if I got the flu or pneumonia it would be much worse in me. Hope this helps. Vanessa

Hi, what is everyone's opinioin about getting a flu shot...has anyone gotten one? if yes, any side effects? is it safe to get one if you have POTS? feel free to add anything else!

Glad you made it home ok. But I still dont know what an "EP" is. It doesnt sound very good to me. Please let me know what it is. Thanks Vanessa

Hi folks!

Oh my I hope I ddint scare people with my EP experiecne!! I really didnt mean too..

Dr. Grubb was great and did his very best to make me comfortable...and pain free. he kept saying that he normally has people sleeping when he inserts the thingys into the (he didnt say thingys.. I just cant think of what they are called!!) the groin..he explained to me what he was doing as he did.. when he was giving shots and meds and what not..

it was kinda funny.. Dr. Grubb goes before the proceddure started " where 's the music?? Pop a CD in!" (to one of the ladys in the room.. and the voted to play the "Dysautonomia" CD.. that is what they called it.. I also most wanted to cry when the first song came on..it was the song by leeAnn Walmack (SSP??) I Hope you dance... and that is one of my all time favorite songs.. and I told Dr. Grubb that too.. he smilled.. good doc that dr. Grubb!

The good thing about having the EP done --yes there is a good thing-- that dr. Grubb was able to rule out whatever it was he had to rule out.. ( cant think of tha tright now either! my brain is mushy right now..) ... and it was necessary to have it done..

On the not so cool side.. I dont think I should ahve left toledo this morning!!!! as I was not feeling well at all.. and knew better... I woke up this morning... and I was covered in a nasty rash from head to toe.. all over my face.. neck hands arm back shoulder stomach.. WOW! was I itchie.. so Julie and I were standing there talking and we decided to call the on call doc at like 7:30 this morning.. and I spoe with Dr. Suh.. he wanted me to come in and be seen by dr. grubb this morning or Bev.. as that is an unusaul reaction..

I restisted.. as my bus was scheduled to leave at 8;30 am... boy I am a dumb ash!!!!

SO the doc calls me back and says that he thinks that some of the meds they gave me were interacting w/ my regualr everyday meds.. and he told me to take Benadryl for the trip home and then he called in Prendisone to take as soon as I got home... and take till the end iof the week.. and to call right away if I got worse or had more problems...

I'm alittle better then this morning.. I'm not a sitchie... and my skin isnt as red and flushed looking...

the bus ride was rough.. but i made it...had alot of chest pain.. and tachy... EEEEWWWWWWW

I am hoping and praying that this different BB helps me.. and gets these crazy Hr's undercontrol..

I'm going to get on some peoples behinds here locally b/c I am tired of getting the runaround and shoved to the way side and see if I cant get a competent doc!

Ok well rant over..

legs are quite sore.. and I really need to take nap.. thtanks guys!!

linda

It was hard for me to answer this poll, but I put what I knew. The only thing is I had a major car wreck in Oct of 2004, and in Feb of 2005 is when I started showing the symptoms. Since I was not seriously injured, the docs dont think that it is the cause of it. My Neuro said that the wreck may have triggered it though. Before the onset of this, I was very active, always on the go. Never sitting still. Had no medical problems for over 20 years. My family was all relatively healthy also.So docs are puzzled. Hope this helps. Vanessa

Hello All,

Based on Denabob's excellent suggestion that we may be able to associate some of the reason behind POTS, I have come up with a small poll. (i am slowly realizing that we are the experts!)

My knowledge is limited when it comes to the certain types of illness that can result in POTS, so I have just listed Illness. reading through the boards as enable me to come up with some of the other suggestions.

SO of S = sudden onset of symptoms ( I felt this should be divided into four categories, as we may find that looking back you discover things that went un-detected, and if so / or if not it is interesting to try and establish a genetic connection.)

Depending how this goes, we should maybe also try to establish connections between skin colour, lots of us seem to be fair skinned. I know my professor has proven a link between hypo-extensive (double jointed ness) and he was looking at a blood fear link.

I have also added in trauma, as i had heard this may also be a contributing factor.

It would also be interesting to try and complete further research into how gender relates to the development of POTS.

these are just ideas... I'm sure we should try and research further into pregancy, and genetics etc... but i thought this would be a start...

It is good to hear that there are docs out there who truly care. I have a great PCP also. I see her and her husband both. They keep reasuring me that I am not crazy and we are all going to get to the bottom of my problems. But I do know that there are docs out there that are just a waste of space. If the diagnosis is not right in front of their face, then they do not want anything to do with it. You would think that they would want to take on the challenge as a learning experience, but most dont. Glad you have a good one. Vanessa

I had to go to my PCP for a follow-up after my numb face/numb hands incident in the ER. My regular PCP (who last year wanted me to go see a psychotherapist) is on maternity leave, so I saw a new younger male doctor.

He was awesome. He spent 30 minutes with me. As you all know, 30 minutes is a long time for a doctor to spend with you. He had 1 POTS patient a few years ago, so he knew what I was talking about!! He said that he was pretty sure that the numbness came from the POTS, but wanted me to call Dr. Fouad's office and tell them about my symptoms. He urged me to wear compression stockings. He seemed genuinely interested and concerned. He also referred me to a new neurologist to rule out anything else. He wants to keep MS on the backburner for now, but is not ruling it out. Finally, someone who is going to help me. He wants to see me back in a month.

I took the POTS brochure with me. Even though he had a patient with POTS before, he looked at the brochure, and wanted to know which of the symptoms listed I was experiencing. I think I'm going to keep this guy!!

Sorry to hear you are having such a bad time of it. I hate IVs also. My veins just wont cooperate with the nurses or techs. I have a question for you. What is an EP? I hope that I do not have to ever have one. Have a safe trip home. hope you find some answers soon. Vanessa

Hi folks!

Wanted to pop in real quick and lwt you know i had my EP done oday.... boy oh boy what day!

I got taken back to the EP lab holding area.. and they tried 6 times to get an IV into my veins in the hands and all over the arms.. and had no luck.. so thay had to talk to dr. grubb... and he inserted and IV in the groin... OUCH!! OUCH!!

cant remebr what he called it though..he sai that he normally does this procedure with patients sleeping...but since we had such problems with IV access.. we had to take an alternate route so to speak... He said he was sorry he had to do it this way.. He gave me a shot to numb it some.. an i didnt feel the initail incision.. but i really felt it when he was going in the right groin area.. and it HURT!! dr. grubb was great though.. had it been anybody else doing the proceddure.. i wouldnt said yeah right and left.!

and he went into the left groin too.. that wasnt as bad...they inserted the IV into the groin and finally gave me some "happy juice" as the nurse called it.. i didnt really feel the effects from it.. but the Nurse said that i looked relaxed...

SO Dr. g went on with the procedure.. and boy he got my ticker ticking.. let me tell you.. i experienced alot of chest pain and shoulder pain.. and he slow up on the pacing but i felt the pacing and was awake and very aware of what was going on.. was not the most pleasurable thing i have gone through..

Good news is...there is no "short circuits" or extra nerve bundles.. and it is not a rhythm problem causing such high and sustained heart rates...

bad news is..Dr. g isnt totally convinced that my HR issues are all pots related.. but cant quite put his finger on what it is yet.. we're missing something somewhere.. but dont know what or where that something is..

Dr. Grubb is great.. very kind and supportive.. and gave me a script for a stronger Beta blocker.. and gave me the choice of staying over noight at the hospital or return to wehere I am staying.. so I am resting at a freinds house now.. she has been great.. and verry helping.. god bless her!!

SO i am still in wonderment of what is casuing such rapid HR. as a HR of 240 is not good...and so is Dr. G...

I have to go back to see him in about 7-8 wks or so..we also talked about some of my other "problems" as the legs pain.. and he agreed with me that fibro is not going to casue the intensity of pain that i am having.. kinda stumped there too..

I have mixed feeling an emotions about today.. I'm very greatful for dr. grubb and all that he has done and tried will do for me.. and that i didnt have to go through an ablation..

but yet on the other hand I am dssappointed as well.. b/c I was hoping that i could at least geeeeeet my 240 HR undercontrol.. i did not want to here that part of the casue of my HR is b/c of pots.. i am so rapidly deteriorating.. and really just want to be able to enjoy some of life...

all right folks i am really hurting right now.. I will be in touch with you once I et home..

love and hugs

linda