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Avatar universal

Can anyone help me?


  I have multiple auto-immune problems and recently dx with Hypertension.
  I also have been asked by my Nephrologist to seek care from the CCF as soon as I could relating to my total all medical problems to get control of the illness itself as he worries the disease itself is not being treated by my physicians.
  I am currently onso many medicactions, three for heart,Metoprolol200mg day, VerapamilHCI 240mg,and clonidine 0.2mg2xday. I am still having high BP and the doc I recently went to seemed not concerned and said I shouldn't go to ER if these occur.
  I was or should I say I felt very confused and I didn't bother to say anything else at time of appt because he didn't even care to lookat a copy of journal I havebeen keeping,nor did he say anything a bout any follow-up appt. I see many physicaians likeI said due to multiple health issues
  I did explain that sometimes I do know when these are occuring now because my face goes numb on both sides at times, and once my hand shook and felt like I was holding a glass of cold water, without glass if that makes any sence, maybe he thinks Iam a "nut", I don't really care to worry about what he thinks as I am concerned this is something to be concerned about.
  Current meds:
  Hydroxychloroquine  200mg 3x day      
  Metoprolol   100mg 2x day            
  Azathioprine 50mg 4x day        
  Folic acid   1mg day                
  Clonidine(Catapres Eq) 0.2mg 2x day        
  Verapmil HCI  240mg day          
  Prevacid 30mg day              
  Neurontin 400mg 4x day      
  Prednisone 40mg day            
  Atrovent 4 puffs day        
  Vancenase 2x day                
  Pretz spray 2x day                
  Azmacort 2 puffs day          
  (I HATE TAKING ALL THESE MEDS!!!)
  DIAGNOSIS:
  Hypertension,Fibrosis,Neurogenic Bladder,Peripheral Neuropathy,Sjogrens Syndrome,CNS,
  Arthritis,Asthma,Scoliosis,FM,Reynauds Syndrome,TMJ,
  Polymenoria,Migraines
  *other findings:Lupus???(several docs have said YES,call me PeeNut!)"I don't care what they call this,as long as I am treated for when need be. Validation will come, I know!"
  Illioguinal Neuropathy,Tendosynovitis,chronic sinusitis,Epichondilitis, Photosensitivity rash(many times as child had sun poison,blistered terribly,once in service as well,almost court-martialed for destruction of Govt. property,1st/2nd degree burns),nose/mouth ulcers,alopecia,PVC's, PAC's, Arrythmias, Bygemeny(sp),pitting adema,polyp cysts in nose, no gag reflux as well as lining of throat and nose damage.Dr.Arbour says he can't help, this is the disease causing this???...so need not return, hubby present for visit as well.
  ***********************************************************************************
  Allergies:
  Sulfa drugs    Codeine    Ultram    NSAIDS   Tolectin/Motrin    Estrogen  Progesterine
  *many reactions to many meds at times,become very sensitive for some reason.* Many trips to ER for hives, swelling reactions.
  COPY OF jOURNAL i GAVE THIS NEW DOCTOR:
  some December/January BP monitoring               Tuesday, January 12, 1999
  *****************************************************************
  Times      Symptoms                  BP/Pulse           Comments
  10PM      face went numb           222/197P49         ???
  11PM      same feelings               176/170P120       ???dizzy still
                 same episode               162/137P88         "               "
  " "           "                  "              145/105P117       all sitting up position
  *****************************************************************
  1:46AM Monday/was asleep and awakened 159/142P115   ???
  "                                                  "            171/163P110    ???
                                                                   172/164P96      ???
                                                                   156/100P102    came down fast!
  *****************************************************************
  11AM Tuesday another numb in face, pain in head as well at times andpressure in forehead area.
  176/155P121
  172/144P114
  156/136P100
  141/96P117
  145/133P117
  135/81 :)P118
  *****************************************************************
  same day as above, time was 12:53PM
  256/233P82
  158/149P121
  177/158P126
  136/93P115
  157/137P121(many times I went o sleep after these to rest,not understanding at all whatwas gong on they last ed different amounts of times, some seemsed forever! argh!confused and feel so unsure what is going on and WHY?!?!?!
  *****************************************************************8:40AM
  150/95P94 :)
  146/100P92 :)
  *****************************************************************
  Jan23AM, yet again awakened by this and didn;t know why?!?!?!
  174/153P91
  182/159P91
  151/109P92
  185/164P78  ???
  166/101P75
  148/96P62
  *****************************************************************Jan7
  176/155P121
  172/144P114
  156/136P100
  141/96P117
  another episodesame day
  145/133P117
  133/81P110 :)
  I can tell now when it feels strange , but not painful, but after my chest is hurting sometimes, too much pressure and feels like someone squeezing me! Pain was in left side of head, like lighning bolts! :'(
  *****************************************************************Sunday10th, terrible day!!! :'(
  5:30AM awakened to
  158/146P103
  168/100P105
  136/91P101
  143/90P100
  162/96P100
  169/144P101 ???
  163/99P96    ???why up and down now???
  158/98P96
  164/100P112
  7:50Am(took random BP)
  142/91P67 :)
  9:30AM
  153/138P112
  10AM
  151/111P128
  10:20AM, after walking just from bedroom to kitchen and sitting down...
  227/177P123 ???
  142/97P124
  153/93P124 face got numb, felt like I was in a heavy work out feeling, exausted, out of breath, and just drained! wheezing aslo, heart feels sore.
  5:30PM. head so sore,chest so sore, feels like a muscle was torn,dull chest pain, butkind of like a releif,like when I had costro many a times.  
  166/162P128
  141/132P126
  136/86P120 :)
  6:50PM
  166/142P86 same numb feeling and pressure inhead after
  164/155P76
  140/132P123
  180/160P117 ????up???
  145/97P117  ???so fast down???
  203/160P61???too strange and why is this happening???? I need to know!!!
  notes say:
  behind head sore now, dont know to implode or explode(hey have to keep sane )heart feels sore and beaten up! :'(
  7PM
  183/151P124
  143/110P118
  140/92P121
  ****************************************************************
  Monday 1:35AM
  138/106P114
  131/97P110
  148/96P115 seems to be releaved now, yippee!!have had pressure, nausea, stmach hurts,neck feels still swollen,heart feels so bruised to even when brething,but seems to have something happened, i an take breaths easily now, still sore at times and still get occasional spasm like pains like i get in bladder too aften!
  what is this, I have no clue, anyone!?!?!?!?!MY spine still hurts!!!! :"((((
  Add on: Wednesday, January 13, 1999Doc, would you be concerned????thank you for any help in right direction....seems I may be comingyour way sooner than later as I do have a few caring doctors that too need and want me  to get good care and releif. Thanks ofr your time and your services.
1 Responses
Avatar universal



Dear Susan, thank you for your question.  You certainly have a number of complex problems and you must recognize that it is beyond the scope of this forum for me to make diagnoses, specifically address each problem that you have, or to make recommendations regarding treatment.  However, I will add a few thoughts.  First, your BP needs to be controlled better and perhaps there is a better combination of medications than metoprolol, verapamil, and clonidine.  Second, you refer to episodes at the beginning of your question, but there's not much detail.  Thus, I can't determine whether you are having a fast heart rhythym disturbance of the heart or something else.  Third, the diffuse pain syndrome that you describe is unlikely to be related to your heart and may have more to do with your underlying connective tissue disorder.  Finally, I suspect most of your respiratory symptoms are related to asthma and may clear up with more aggressive use of your inhalers.  We would be happy to see you at CCF, but I recommend that you see a general internist or a rheumatologist as your initial visit.  These physicians could determine if a cardiology appointment is necessary.  
I hope you find this information useful.  Information provided in the heart forum is for general purposes only.  Only your physician can provide specific diagnoses and therapies. Please feel free to write back with additional questions.  Good luck.
If you would like to make an appointment at the Cleveland Clinic Heart Center, please call 1-800-CCF-CARE or inquire online by using the Heart Center website at www.ccf.org/heartcenter.   The Heart Center website contains a directory of the cardiology staff that can be used to select the physician best suited to address your cardiac problem.





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