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Any advise appreciated...confused and tired inTexas*warning:LONG*

Posted By Susan on September 14, 1998 at 12:59:47:

Hello again! Last time I wrote was in August7th, after being confused still on heart problem. Since then I have just now seen a new heart docas my PCP has referrd me.
I am still having problems and am on a new med called Plendil5g daily.I will list all my meds following this post.  When put on Plendil, I am now experiencing the very same thing i have been saying to my doctors, the same symptoms exactly, only more.
I will share my journal here as this may help you seewhat I am saying also, I did contact my doctor's office, only to be told only to take this med tomorrow at noon instead of AM. I am just so confused by all this, are they hearing what Iam saying and that it just takes med awhile to take hold or is there something going on no one is seeing?
Please help me if ya can, or at least reassure me this is ok. also: can CHF come & go? Like symptoms come and cause this and then just disappear only to reappear agian? sorry, so confused and getting ANGRY!
Meds:as of 9-10-9
Neurontin300mg 4x day
Plaquinil 200mg 3x day
Prednisone 45mg day
Salagen 5mg 4x day
Plendil 5mg day
Metoprolol 100mg 2x day
Mycelex 10mg 5x day
Furosemide 40mg 120mg as needed
ProventilHFA 2x day
Duratuss 1200mg 2x day
*other meds as needed only
tears renewed for Sjogrens

Sept. 10,1998

I went to my nephrology appt, Dr.Bahaar, went well, results came back good! :) He said there is signs of kidney involvement  and Dr.Mattson should check regulary and will see himwhen time need be, he is such an honest doc and I respect that. He said to make sure she knows this is "Sjogrens" and make sure anyone else knows this as well. Saw a Dr.Wazniak referred from Dr.Mattson after telling her what Dr.Rebeccas office said. He seemed real honest and real stern(sp) about smoking,makes me want to quit more, oneday.  Any ways explained the best I could, I think he did listen, seemd puzzled, of course who isn't with me anymore, and he even stated many other doctoras after reading my records too "scratching their heads"argh!  This hurts to hear cause i know they may not have the answers, but at least help get this problem fixed! See doc in two weeks.
I took the new medicine called Plendil5mg as well as rest meds...woke uphaving same problems I have ben describing to mydoctors, my heart feels like all a sudden it just drops..my pulse drops into the 50's and terrible tohubby says very faint. Anyways, all morning so DIZZY...these exact things I say is happening, hapened day! These are the same exact things, my BP at time of dizzy and feeling like my chest is being squeezed is now at 97/48, several timesI took it and it was as follows:
101/52 P102(sitting) 11AM dizzy, wheezing
101/60 P103(sitting) 1PM  same, stomach upset
97/52 P 102(sitting) 2PM
called King's Daughter ,Beckyand Dr.Mattson are out,talked to Frances, she said cut pill inhalf tomorrow.Eddie aslo called and he said same and heard my wheezing and said go to ER with the fact that ankles are sweeling and having difficult time, im hanging in there,don't wantto go to ER. Why Lord? Why can't they find this? My bodyis hurting! I want pain-free days in my life too! It's now 3PM, here i sit in pain, my left kidney are is hurting,so much pressure ,doesn't it ever stop???
Still dizzy, maybe this stuff wears off fast,whoknows, I just feel so drained and hurting.took afternoon meds, Plaquinil, Salegan,and neurontin.Still having wat I call chest discomfort, feels bruised is only way to describe it, still get little stabbersin center of chest, but whole muscle feels hurt, almost same feeling in kidney area. Once today, I amlost forgot Itooka needed deep breath and pain just grabbed me like a stab,ouch! I guess asthma? Suer made me wheez! Hate this ****!!! My ribs are even sayong owie, whats new?3pm BP132/86 P86
125/52 P89 still feeling bad, flank pain isgetting worse, heart feels heavier , Eddie called, how sweet,he said if it happens again, don't hesitate to go to ER; he was just checking on me, what a sweetie, thank You Lord for some that care! I reasssured him I know when to go, I hope! time to go to Jamie'sv-ball game. :) Lord give me strength, in Jesus name, Amen!
Oh, my goodness...dear Journal, what a way to end the day. I was pulling out of driveway, while driving backwards I turned m head and all a sudde n a huge pain shothrough my chest like a bolt of lightning, I was so paralized for just a few seconds I'm sure and nextthing Iknow I was about to run into the rock wall, the  jeep apparently slid a little sideways, I was so upset Iwanted to sit and cry, but the funny thing is I was feeling better??? It felt like a big relief , all that pressure seemed to belifted, like a feeling something just tore yet was relief, wasno terrible painor anything, justone blow that I barely remember.  It felt sore after, but nothing like whathappened al lday and hasbeenhappening.  I thank God,He must have been with me, cause I was so close to smashing theJeep, I feel so upset still. Hubby is saying no more driving, bull! WHY???  What happened to me Lord???Whyis this happening and I am made to feel "nuts", why can't they find this, am I going to just quit trying and let what is going to happen,happen? I'm getting so upset emotionaly now too, of course the headache doesn't help either. My BP is all outof whack, yet I feel fine compared to today, I guess the med really shocked my body or something. it is now 9:30PM  BP:102/52 P115, earlier recordings hubby did were so strange, yet kept saying during a dizzy time also...143/118 as well as 91/49 P81, quite extreme I say, dang it!TookPlaquinil,Lopressor,Neurontin,Lasix,Duratuss, & tylenols, my head has had it,i guess med too causehaven't beenhavingg these like this.  at 7PM. Good night Father, at least I know I can lean on You!
*note* hubby & I notice when I say this is happening,on the monitor, when  inflating, it always went to 250 before reading, ithink same reason I said to doctors, my pulse gets so shallow and I think the monitor too is so sensitiveand not getting strong pulse!*
just took BP:dizzy as a doorknob againarghhhh! It was BP 104/44P78 just don't feel good at all,dang it! :( Night journal.  BP 124/98 P94, this is minutes later!
September 12,98
Happy Birthday darlin! awakened 1:15AM with same dizzy, heavy chested feeling and am wheezing, taking proventil, went to bathroom and took BPafterBP:100/44 P96urine output very little, especially for taking 80mg lasix. left ankle is more swollen this AM, right not as bad, some adema as usual, left is stinging.  
Still having such a difficult time,I wish I knew what was happening! :( All day dizzy on and off, when dizzy my BP was low. By 9ish in evening pressure seemed to stay norm and went to sleep. Slept most all day, left ankle very swollen, right some, adema present. Here are random BP for today, what they mean, who knows!
*what I am trying to do is do one BP at time i feel different, then as well as after. All BP's taken with Lumiscope Digital model #1083, blood pressure monitor.
BP             P           Symptoms
146/94     106       awakened 5:50AM
148/98     104
142/92       97
143/107    97        dizzy, heavy feeling inchest/all PM after 7PM; meds wore off?
145/109    98        stilldizzy,worse
147/98      97
145/96      98
143/101   98
138/90     57
132/90     101
132/92     103
Awakened feeling dizzy all over again, even before meds , argh! My left ankle still very swollen, may have gone down a little, very little. Neuropathyi guess is makingme feel very cold inlegs, like constant feeling of cold running water. I have a very heavy feeling in middle of chest as well today, not reflux, this makes me dizzy and also feeling a sensationin face.  Feeling weak somewhat, no energy at all.  ..and they wonder why people smoke! Also let me not forget today already having stomach cramps, sometimes severe along with this chest discomfort, already had 4 bm by 10AM, acidy like babystools, argh!Owie! :' ( I think from all the changes all morning, still very dizzy!!!Took all meds at 7AM.What a morning, makes one just rejoice!
BP             P           Symptoms
70/26?     98         awakened chest heaviness bad/hard to grab breath
112/67     72
90/49       70
92/44       74
90/34?     67
89/45       88
97/59       93
101/57     55         laying back down, dizzy
87/48       88         heavy feeling in chest
99/50       72
90/25?     85          really dizzy again, felt like this morning all over, argh! :'(
99/55       62          same,wheres the halter when ya need one, dang it!
103/64     87          feeling a little better,all by 11AM
BP             P           Symptoms
97/50        79         still dizzy/sitting/no pain
85/52        63         "same"
117/67     88          
108/62     77           stomach is a mess, terrible acid/yellow stools like water,burn :'(
96/58       63           dizzy still, guess this is what today looks like, dang it! pressure on left side again.
96/59       87           heavy pressure in chest, like hard to get a dee p breath,sore when I do,dizzy.
91/57       80           few minutes later,face also has feeling of a flushing like sensation, like  heat
                                  feeling, especially in cheeks??? 12:44PM recheck:BP 93/61 P90, my chest hurts!
                                  achy type little pains as well now, not what I call severe, just annoying and there
                                  on a scale 1-10, I would say 3. little stabbies is what I callthese. Still hate them!:(
87/57       78            still feel crappy!DIZZY!
96/54       80            "                                         "
                                  ACHING NOW, SOME SMALL STABBING TYPE PAINS,SO DIIZZY95/50
                                  P 93 MAKING ME WANT TO CRY,
                                  RIGHT ALSO HURTING, NOT AS BAD AS LEFT THOUGH.
106/50     104         DIZZY!
109/59     106
                                  ME, CHEST FEELS HEAVY LIKE YA WANT TO PASS OUT FEELING.
                                  7:09pm/RECHECK BP:100/79 P 105(WHO WOULDN'T BE DIZZY,
                                  PLEASE HELP ME FATHER!
126/77       111
                                  STILL DIZZY 7:18pm LEFT FOOT STINGING SO SWOLLEN STILL,
                                   RIGHT FOOT NOW SWELLING LIKE LEFT,ARGH!
154/111     78          ARGHHHHHHHHHHHH!
83/35?        118       I FEEL LIKE IN A BATTLE ZONE
109/67        110       "                                                          "
101/56        120        HELLLLLLLLP
141/129      74          PAIN IN KIDNEY AREA,SCALE:6 ,DIZZZZZZZZZY
143/91        65
163/120?    98
118/105      58          
89/59          114         I FEEL LIKE PASSING OUT 7:46PM
120/65        110         PLEASE MAKE IT STOP/TEARS DANG IT
119/68        101
135/88        79           feeling much better :)STILL A LITTLE SOERNESS FEELING IN CHEST,
130/86        75          10PM calling Dr.Mattson in morn, I'm ANGRY! MAD,TIRED OF ALL THIS! ALSO
                                    SEEING DR.SPRINGER TOMORRO, MAYBE HE CAN HAVE SOME
144/119        98
136/94          103       going to BED!
137/93           57        who can sleep with this???
                                    Called Dr.Mattson at 8 sharp,talked to Becky and explained what has been happening, gave me Dr.Wazniaks #.512-901-4701in Austin. Talked to his nurse and she said she would give him the info. Frances(bless her heart) called to check up on me, she is not pleased at all either and calling Dr.Wazniak now, yippee! Chest aching a bit,little heavy feeling, but thus far, pretty good, feet swollen, but not like yesterday, they sting. Took meds 8AMDr.Wazniaks office called and only said starting tomorrow take Plendilat noon. Thats all she said and if I feel real bad go to ER, that helps me alot, especially if i go through a day like yesterday,argh! We'll see.
BP                P           Symptoms
132/100      76         8am
134/92        73
123/77        77         so far so good! :) little achy
117/73        94         some small chest pain 10:18am
125/100      69         moments after chest started hurting
113/95        69         same time,recheck,still dizzy
126/95        80         still feeling heavy chested,legs are getting cold as usual , left ankle sweeling up
                                   again. 10:30am
110/73        92         feelin better somewhat, just makes ya feel like a yo-yo,Neuropathy sure has
                                   kicked in,legs numb feeling. some chest discomfort,not bad at all.
113/77        92         feel fine, same symptomsas above,adema is showing more as well, nothing new
106/70        79         "    11AM        "
141/92        97         heavy palps, pvc's
141/97        94         same feelngs, pvc's gone I guess,LOL!usually don't feel those much anymore.
124/79        100       5 minutes after above, feel fine.
124/78        101       having just achiness in chest,little stabbers.other than that,rest same,ok :)
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