If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

breaking point

Collapse

About the Author

Collapse

Toogoofy317 non-obstructed hcm, AICD 11-01-02 and 10-6-05 Find out more about Toogoofy317
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • breaking point

    I can't do this anymore! I am so tired of fighting I don't know what else to do. It seems like no one is listening.

    My life has been I'd have to say the worse it has ever been since I went up to Gainesville. The anti-depressant they put me on caused a severe reasction after a week and a half on it. I woke up in the middle of the night with severe cramps, shaking chills, and an urge to end my life. I went to the ER because I didn't understand what was happening I had a pretty good day. I went out to Epcot and got to see all of my old friends. How do you just wake up at 2 in the morning wanting to kill yourself? So, the ER doc told me it was a reaction and gave me a script for some ativan and sent me home.

    I was ok for a couple of days but again it happened while at a friend's house. It was a good day went to church and was quite happy to be alive! Then the horrible cramps again followed this time with chest pain, sob, and thoughts of ending my life. So, again I was taken to the ER this time was given IV ativan and 3mg of dilaudid for the chest pain and sent home. I got home around three in the morning went to bed and woke up at six with the cramps, pains, and bad feelings. So, I took all of my morning meds plus the ativan (big mistake!). I had an appointment with a couselor from work but decided to call early to see if I could get in. Apparently while talking I had a slurr due to being over medicated and 911 was called.

    I was Baker Acted as an overdose! And I was actually ok with it because I was getting scared with the effects and they said it could take over a week to get out of my system. My roommate became my power of attorney and the hospital assured him all was ok and he reminded them of my problems with small spaces when stressed. He went home and an hour later they wanted to put me in a room about the size of a shower stall. I told them I would not be able to cope with that. That told me it didn't matter. I asked them to call my roommate they refused. I still had my cell phone and called him because I had a bad premonition. They came back in and said I was going there regardless. I requested a patient advocate and they said "you have no rights". My roommate was less than five miles from the hospital but they would not wait. Five people came into the room a 300lb security guard, Er doc, and three nurses. I freaked out and made the mistake of trying to get out of the bed. The guard grabbed me on the shoulder where I just had my AICD replaced I immediatly stopped resisting but the ER doc grabbed my face and slammed my head into the stretcher with such force my glasses cut my nose. He then proceeded to throw my glasses out of the room where to deputies were working an accident and came to see what was wrong. My roommate came at the same time. The doc tried to charge me with assault on a health care worker! When the cops heard my story they said I was the one needing to make the report. I was so scared and my chest was hurting so bad. I had totally lost control and was constantly vomitting as well. Thank God my roommate wouldn't leave my side until they took me to a psych facility over two hours away.

    There it was determined it was not a suicide attempt just a reaction to meds I didn't even need in the first place. They said it was situational depression that meds didn't help. They tried xanax in the psych place but I had to be on the geriatric unit at night because of the o2 and they screamed all night long. I felt like I was in a night mare.

    So now I am at the point I have not slept more than a couple of hours a night and have woke up screaming on a few of those occasions. My PCP doesn't want me to have the xanax because it can be addictive and the ER I was at is refusing to give them the records as to what happened that night!

    I don't know what else to do. I am at my breaking point. I am still not myself. I've lost all interest in everything even school. I will probably have to withdraw from all classes now. I'm not eating, not sleeping, and amd still having bad thoughts. When I went to my PCP today she said she can't do anything until she gets the records but I don't know how much more I can stand right now.

    I was also denied disability this week, my cell phone died, and I haven't worked in two months now.

    I am begging for help I don't know what to do!

    Mary S.

  • #2
    Mary,
    This is a difficult situation for you and for your friends here. You know that we are hear in cyberspace sending you good wishes, friendship and positive thoughts...however that is of little help at 2am if you wake up and feel so poorly.
    There are many small issues in ones life that gather together and make 'situation' some of which are controllable and some of which are not. You have heart disease that is one issue, you are also a normal person with normal stressers in your life. On top of normal stress and living with a chronic illness you appear to be very sensitive to medications which may or may not be adding to your symptoms as you have listed in this an previous posts.
    My advice to you is to work with your PCP and create a plan to help the whole you. It may be a good idea to think out of the box and try things that you may not have tried before. Attitude is a powerful tool - I know you have had some less then positive experiences with doctors and health care professionals - I would suggest you try to put that behind you and focus on the positive encounters you have had. It may take a prolonged admission to a hospital to get your physical and mental health were it need to be so that you can live a positive and productive life.
    Have you been in contact with your towns health department yet? They may be of assistance to you.

    Be well,
    Lisa
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

    Comment


    • #3
      Mary,

      I will be praying especially frequently for you at this time.

      Rhoda

      Comment


      • #4
        Mary, my thoughts and prayers are with you more than ever right now.

        Reenie
        Reenie

        ****************
        Husband has HCM.
        3 kids - ages 23, 21, & 19. All presently clear of HCM.

        Comment


        • #5
          Hi Mary,

          My prayers are with you. I hold you up to God and ask him to comfort you in this dark time. Please send angels to Mary, from earth and heaven, that each moment will offer you hope and renewed peace in all that is happening around you. Please know that God is right here, right now among all that is happening.

          Peace to you dear one,
          Sharon

          Comment


          • #6
            Mary,
            What a horrible experience. I am so sorry. Thank goodness for your friend who stuck by you.
            When it seems as if everything is falling apart all at once, it is so hard to see ANYTHING positive. When I found the HCMA, I was at my worst. I didn't know it at the time, but it was mostly due to a reaction to Paxil, then Effexor. I was a mess.

            I hope you will soon be feeling better. Do you have any other support, other than your roomate? I think someone should be with you at all times, until you get past the suicidal thoughts. How scary this must be for you.
            ((Big hug))

            PM me if you need someone to talk to. I will give you my phone number.

            Pam
            It's not what you gather, but what you scatter that tells what kind of life you have lived.

            Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.

            Comment


            • #7
              Mary, I am sorry you are having such a tough time right now. Please try and find some help for your emotional state right now. I am keeping you in my thoughts and prayers. Remember we here at the HCMA care about you.
              Midge

              Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
              ICD&Pacemaker 1996
              Heart transplant March 19, 2004 @ Mayo Rochester
              Mom of Kaye.

              Comment


              • #8
                Mary you have to keep plugging along and I agree I think you need to talk with someone and not because you are crazy because we all know you aren't Just to talk to someone and get all this off your chest hey I do and it has helped me alot, it will make you realize you are worth fighting for and you are Mary We all Love You here on the board, I will keep you in my prayers

                Shirley
                Diagnosed 2003
                Myectomy 2-23-2004
                Husband: Ken
                Son: John diagnosed 2004
                Daughter: Janet (free of HCM)

                Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                Comment


                • #9
                  Thank you all soooo much for your support.

                  I saw my local cardiologist today. He had finally talked to Dr. Maron. He thinks the EECP therapy may be worth a shot. He was appalled with the treatment I recieved at the local ER. One thing he said that was interesting the anti-depressants paxil and zoloft are supposed to help stabilize blood pressure in HCM patients. He said that this was a new article just published out of the UK. Anyone heard about these studies? I guess I should have asked him the name but forgot. My cardiac meds are now 25mg Toporol a day and nitro paste. It seems to be the only type of vasodilator that is not bottoming me out right now. I was also amazed at how blood pressure can change in a matter of minutes when I was checked in it was 96/60 and after telling him about my ordeal it was up to 118/70. He kinda joked and said "now I know how to get you out of a hypotensive episode just ask about the ER visit"

                  I am still having a very hard time getting my medical records from this atrocious experience. I was told yesterday that it was a holiday that is why my doctors office and I couldn't get the record. When I went there today they told me they were open yesterday. So, I asked for the record and they said they would immediatly fax it to my PCP when I got there my PCP told me that they could not fax that information that it would have to be mailed and take three days to a week. I am planning to go and request that my records be given to me but I'm afraid they are going to pull the line it is not in your best interest to see the records! My PCP cannot treat me for the PTSD until she gets both sides of the story and why my body reacted the way it did to the med.

                  I still can't get to sleep to save my life. Does anyone have any ideas? I'm only sleeping about an hour or so a night and it isn't a good hour either. I'm beginning to get very irritable and not rationalizing quite right.

                  Thanks for always letting me get my feelings out!

                  Mary S.

                  Comment


                  • #10
                    Just remember, the Freedom of Information Act says you have a right to any and all of your personal health records. If they say you can't see/have them, start spouting the FIA at them. I've had to do it before and you should've seen the girl's jaw drop. I suppose she didn't think I knew that. But I got to see the records in question. You may have to pay a fee for a copy for your own records but it's free for them to send the records to another doctor.

                    Reenie
                    Reenie

                    ****************
                    Husband has HCM.
                    3 kids - ages 23, 21, & 19. All presently clear of HCM.

                    Comment


                    • #11
                      Absolutely don't leave the office till they send records. that is total bs!

                      Seriously, between HIPPA and FIA, you are entitled to your records and if they continue to play hide and go seek, you will sick a lawyer on them (I would be happy to have a friend of mine write a letter if you need it).

                      As for sleeping, can you take benedryl? 2 benedryl should put you right out.

                      Classical music, especially baroque is also helpful.

                      hang in there!!

                      S

                      Comment


                      • #12
                        Mary,

                        I'm so sorry for all the horrible experiences you've been having.

                        You are really an inspiration, because you keep plugging along and just want to have a good life. That can mean so much to so many people...
                        how you have the strength to keep going. You are much stronger than you know, when you really think about it.

                        I will keep you in my thoughts and prayers.

                        Debbie

                        Comment


                        • #13
                          Mary, I am sorry about all that you have gone through. I wish I could help in some way. I am with the rest that you should not leave the office with out the records in your hand.

                          Please keep fighting and remember that you have a lot of family on this forum that Love you and care what happens to you. We are all praying for you.
                          Donna B. HCM & ICD. 2 sons with HCM. Brother passed away from HCM at the age of 39. Mother has HCM.

                          Comment


                          • #14
                            Honestly,

                            I just wish my doctors cared! I finally got the records today and my PCP told me there was nothing else she could do for me. Well actually her staff did she wouldn't even spend the couple of minutes to come out and talk to me. I guess she thought I would beat her up too I like I did the 300lb security guard according to the medical records. I can't believe the krap that was in my record now. Any doc opens it and they will see a person that is " overdosing on one xanax, getting abusive for no reason, and a drug seeker"

                            I do everything these people ask of me. When they give me a refill of my pain patch I turn it back in. As a matter of fact every pain med I've been prescribed lately I've given to them as a sign of not wanting all of these pain meds. But enough is enough so I'm going back to the psych facility to try and get some help.

                            I've not slept in almost two weeks and having bad thoughts. I'll check back in unless your tired of me too.

                            Mary S.

                            Comment


                            • #15
                              Dear Mary,

                              We are NOT tired of you! We all care for you very much and truly wish that there was more than we could do, but it is hard when we are so far away.

                              I know you have been blocked at every turn, but try and have faith that there is a point to all this and your health will improve.

                              Please hang in there and keep us posted.

                              giant hugs,

                              Sarah

                              Comment

                              Working...
                              X