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Starting Sotolol

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Pam Alexson single mother of 3 wonderful young adults;a special ed teacher, an RN and a senior accountant. Find out more about Pam Alexson
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  • Pam Alexson
    replied
    Re: Starting Sotolol

    Thanks.. I am finding improvement with not taking it on an empty stomach now so hopefully the ulcer will heal and all will be good.

    Pam

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  • Linda
    replied
    Re: Starting Sotolol

    Pam, I sure hope things come under better control for you now. I'm so glad to hear Tim is home! Linda

    Leave a comment:


  • Midge Rollins
    replied
    Re: Starting Sotolol

    Pam, it is time things settle down for you. Hope your tummy gets better. Try taking it with soda crackers that seems to absorb the meds best for me.

    Leave a comment:


  • Pam Alexson
    replied
    Re: Starting Sotolol

    Well no Afib so far...some newly persistent difficult chest pain but no a-fib. Now a new gastric ulcer probably from the Sotalol taken on a dry stomach. Have been advised to now take it with food and not worry about the decreased absorption of 20 % with food. If it gets any worse or does not settle down I will have to stop it and try another. This is my third ulcer in a year. My coumadin level has been all over the map as well, had to restart all the ulcer meds .. pray I do not get a GI bleed to add to the mix. Things are very irritated in the region of my entire GI tract and very painful presently.

    Pam

    Leave a comment:


  • Shelly
    replied
    Re: Starting Sotolol

    I received no call today and the girl who answers the phone is so nice I don't want to be rude to her. My EP is from Italy and left today to go out of town. I haven't been beeping, so I shall count that as a blessing. I am waiting for insurance to approve my appointment to the Mayo Clinic on the 30th. I called my regular Cardiologist and the letter to my insurance is set to go out tomorrow. Boy, this is worst than waiting to go into labor lol. It does help that we get tired though. I can't watch much TV because I will fall asleep. Of course 3 teenagers would have nothing to do with that! I hope you are all able to enjoy a little bit of some nice spring weather.

    What was everyones reasons for the sotalol? I do love being able to learn from all of you. Thanks for sharing all your stories and info.

    Shelly

    Leave a comment:


  • Pam Alexson
    replied
    Re: Starting Sotolol

    Shelly , as Linda has said you need to consider better care for your future. This does not sound like an organized office dedicated to the care of patients. Your symptoms that you describe and the beeping of your device are very concerning and troubling.... there needs to be immediate follow-up.

    Let us know how you do and please speak candidly to this doctor about what I have told you regarding Sotalol... I see Dr . Martin Maron and the EP's at The hospital where he practices for this. I skipped right over my own Ep as I knew this was out of the realm of expertise of the hospital that she practices at. Another words ...I do not take any chances and HCM is not a regular thing at that hospital , that is why I took this EP problem( a-fib) to my HCM specialist .

    Keep us posted.

    Pam

    Leave a comment:


  • Linda
    replied
    Re: Starting Sotolol

    Shelly - If you have not yet talked with the HCMA office, please call. I'm sorry things are so difficult for you right now - don't give up on getting in touch with your doc.

    Keep records of all the times you call and responses you are given. Let your doc know what's going on when you do see him and sort out if it's him or staff causing the delays. Either way, he/she is responsible for your care and should be glad to know about these communication probs, if he is now unaware of them. This doesn't sound like an ideal situation to allow to persist for future care.

    Best wishes - Linda

    Leave a comment:


  • MJAG153
    replied
    Re: Starting Sotolol

    Shelly,

    I'm sorry you are having so much going on at once in your life. Metoprolol is the generic version of Toprol. Good luck with the insurance so that you can see a specialist.

    Take care,
    Jo

    Leave a comment:


  • Shelly
    replied
    Re: Starting Sotolol

    Pam,

    I started sotalol without hospitalization, but I also stopped it after about 10 days. I ended up sleeping about 15 hours and had constant headaches, severe chest pains (a couple of times), visual problems and couldn't shake the fog. I ended up taking it and 25 mg of toprol. I called my Dr. and the assistant called back and left a message that I could stop taking my 'motopolol' (not sure what that is) and see if I felt better. I have called them 4 times since and 3 times they we going to call me right back and never have. My ICD beeped again on Monday night. Which turns out to be about a month after the first episode. Tomorrow I am going to find another Dr. to be my EP. I'm not sure how you go about treatment since I have only had my ICD for 7 months. I have had 3 syncope episodes and several pre syncope spells, my EP told me not to drive and I was working with 1-2 year olds at my church and I can't work with all these spells. I asked yesterday what was I suppose to do, I needed a plan or something else to try. And as I said I am still waiting for them to call. Yes, I called today and they were going to find out why I haven't gotten a phone call yet. Unfortunately my husband has Multiple Sclerosis and he is struggling with his walking now and we feel very helpless. I do have an appointment at the Mayo Clinic in Rochester on the 30th of this month. I am just waiting on insurance to approve it, but my Dr. has not sent in the letter they need. I am really getting frustrated! Does anybody have any advise on how to go out of state for treatment? Thanks for sharing your information (it is power). This is such a blessing to be able to talk to others with similar problems. I wish you many blessings!

    Shelly

    Leave a comment:


  • Pam Alexson
    replied
    Re: Starting Sotalol

    I had my Sotalol load and all went well. Feeling a little dizzy at times and head fog, headachey at times but I am sure it will lift as I get used to it. They took my Atenolol down by 1/2 to 100mgs per day. Left my Diltiazem at 360mgs in AM and 180 mgs in PM. Added Sotalol 80 mgs twice per day and have me on Lasix alternating 20mgs and 40 mgs.

    Now... I specifically asked about SOTALOL initiation and no hospital monitoring... This is what I was told:

    ABSOLUTELY NOT EVER. This was repeated by several individuals. I do not wish to cause anxiety but you know I see one of the top dogs here on HCM.. When I questioned further I was told:

    WE are aware that SOME clinicians do give it out in prescription with out hospital monitoring BUT.. and a very BIG CONCERN for anyone... IT is referred to as AGAINST PRACTICE.

    Now the explanation though complex is well documented and warranted for patient safety. The QT interval has to be carefully monitored and kept <520 msec. If the QT interval were to rise above this timed interval, A LETHAL arrythmia "Ventricular tachycardia called Tosades de Pontes," could result. I was told that my defibrillator will protect me but that they just don't jack one up on this class 3 anti-arrythmia med without carefull cardiac monitoring. AND at some time in the future if my dose has to go up it will require additional monitoring for a few days to keep it all safe.

    Now I know this will cause a stir but it should, I am very concerned that a doctor would add this med without a short hospitalization for safe cardiac monitoring. In the literature.. they gave me the medical personnel( because I am an RN) and patient advisory information packet. In the medical personnel info it says SOME clinicians will start Sotalol therapy as outpatient basis in a patient without heart disease or bradycardia including specifics to quantitate this choice. BUT CAREFUL EKG monitoring is a must.
    I believe having HCM is having heart disease and therefore .. end of discussion.

    There was a Rhythm Society Conference in Denver Co. this past weekend so perhaps updated info will come to us via Lisa soon.

    PLease question things such as this when you read the literature.

    Pam

    Leave a comment:


  • Laura
    replied
    Re: Starting Sotolol

    My ICD started beeping while i was in the fabric store. Scarred me.
    My Batteries were red lining. The second procedure was easier than the first
    one. That was a bad experiance.

    Good Luck
    Laura

    Leave a comment:


  • Shelly
    replied
    Re: Starting Sotolol

    Pam,

    I had and AICD put in Oct 2006. My ICD started beeping at me almost 6 months to the day of being implanted. I went to my EP on Thurs in April and they looked at my device and determined that it was noticing irregular beats, but did not need to due anything. The gentleman from Medtronic hadn't ever had that happen before. However, that night I had a syncope episode and have had another one since. I was wondering if anyone else has had their ICD beep at them. I didn't realize the noise was coming from me until after the 6 th time I heard it. I had my husband (who didn't hear the noise) go all over the house with me to find the noise lol. I had made a complete circle and was at a window before I had my husband lean in and determine the noise was coming from me.

    I did talk to Lisa about the sotalol before I filled it. She said you didn't necessarily need to be hospitalized. I had noticed so many others on this board had stated they were in the hospital to start it, so I was a little nervous. It is so great to be able to talk to others about HCM problems. Thanks to you all!

    Blessings!

    Shelly

    Leave a comment:


  • Janet
    replied
    Re: Starting Sotolol

    Hello Pam,

    I started sotalol nearly two years ago and was not hospitalized by my EP because just days before I was in the ER as my ICD gave me an appropriate shock. He would have put me in otherwise. I am only on 80MG (previously stated incorrectly 90mg on another post) twice a day which my EP states is a very low dose. Between the myectomy, maze, cardiac ablation, ICD pacing my LV and the light dose of sotalol, things are working well.

    Yes, I have those lovely nightmares, BP between 90/50 and 100/60, pulse at 60 and a bad case of no energy. One thing sotalol doesn't help me do is lose the 25 pounds I have gained on my big butt since all this started in 2002.

    I hope the sotalol works great for you. Be well, Janet

    Leave a comment:


  • Largehearted
    replied
    Re: Starting Sotolol

    Pam.

    I was on Atenalol and the pulled me cold turkey. I asked them about it, but since they were already starting Sotolol they did not seemed to be worried about it. I was not very happy about that, but it may have had to do with the fact that I already had my ICD too.

    Leon

    Leave a comment:


  • Pam Alexson
    replied
    Re: Starting Sotolol

    Thank you , thank you.. One question more at this time and I know Dr. M will be the official word but,

    Do they lower your beta blocker when you start? Just a reminder... I take 100mgs of Atenolol 2 times a day and Diltiazem 360 mgs in am and 180 mgs in pm. I am "overly" beta blocked on purpose( for chest pian control) for the microvascular syndrome component of my HCM.

    AND Shelly...I did not know that they can start you on Sotolol without hospitalization! Has anyone got more insight knowledge about this? I would seriously question my doc thoroughly on this. Do you have a defibrillator, actually an AICD?

    Pam

    Leave a comment:

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