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What To Do Next?


Michelle F.
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After seeing the new cardiologist last week and after about four days of using a beta blocker and Klonopin to slow down my CNS at night, my chest has stopped hurting, my BP is now around 120/75 which is real close to my pre-sick bp, my HR stays around low 60's. I feel a bit numb (maybe less emotions), but I think it may be because I am finally getting into the deep sleep stage at night. I am sleepy during the days (she said this would be normal.) I am now remembering dreams and it has been a couple of years since that happened. I really needed the relief of heart symptoms that I am getting on these meds, so I don't regret going on and starting this treatment. I know I was a high risk for stroke to go untreated any longer, the way my BP & HR fluctuated so. However, now I find myself at the next question- "what next?"

My neuro wanted me to schedule a re-check with him after I saw the cardio. I now believe I need a new neuro...or do I? Maybe I should stick with just this cardiologist, since she has had the best clue of anyone, so far. I realize cardiologists and neurologists are not normally interchangeable, but in the case of NCS, might they be? The cardio said my NCS is due to my vagus nerve being irritated (?). If I do go to another neuro, I really think I will go somewhere like Mayo, Vandy or Cleveland Clinics.

I will see the cardiologist in five weeks for a re-check. I suppose I could ask her if she believes I might benefit from seeing a neurologist. (?) She does want to talk to me about seeing a rheumatologist at that visit. I agree with her on that.

When I read others posts and I see the information they have gathered at places like Mayo regarding their chemistry make-up, I wonder if it could be very helpful to me. I know I am at least for now better than I was by taking the BB and the Klonopin. It does makes sense to me to give it a chance. But in the long run, might it be better for me to do more now.

Not knowing me, I realize there is a risk to offer advice, but if it were you...what would you do?

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michelle,

for years i have been chasing to get better again. looking for my old self and longing to my old life. at this time (about 7 years later) i am working on accepting my situation and finding a new balance in my new life. i cannot advise you but i CAN understand you. as we are all so different it is up to you to find out what you whould want: chasing doctors to get your old life back is very stressfull and has lots of negative effects on both energy and emotional well being. but than again: it might help. take the time to figure this out, depending on what you want in life i.e. can you live with your life as it is right now. talk to your dear ones and listen to experienced people and in the end: try to find YOUR way.

hope this helped a bit,

take care,

corina :angry:

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Michelle,

If it was me, and I had it to do again, I would wait a little while and just allow myself to feel better. I started exactly those two meds (prescribed by my neuro, not a cardiologist) and began to feel better immediately. Unfortunately, I pressed on to "find the answer" and instead I have other doctors screwing around with the medications and I don't feel like I did. If I could do it again, I would wait, and SLEEP (oh the years without it!) and recover. Try to get in with one of the dysautonomia experts, that will take a while anyway. Take the time to complete a thorough medical history on yourself and get all your records, and try to get some of your life back. I am glad you are feeling better.

If it was me, that is what I would do.

Jennifer

:angry:

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Thank you for your responses. You helped me reach deep within and come to terms with what I know I need to do for now. I have talked with my dh and I will take one day at a time, while holding onto the hope that these first meds will be a help to me. So far, I believe they are. I will see where things are at my six week check-up and go from there.

My dh, as a former software engineer, compared my situation to his when he is trying to fix a computer problem. He focuses on one problem and attempts to fix it before going to another problem. He said if he works on too many problems at one time, he might fix some things, but never really know what fixed which problem. This reminded me of what someone said on this forum about starting only one medi at a time, so I would know how each helped or not. It also reminded me of what the cardiologist said. She said she tries to be very methodical and work on one thing at a time. Sounds sensible.

Thank you.

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