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Sotalol and neuropathy

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Cynaburst Find out more about Cynaburst
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  • Sotalol and neuropathy

    My 72 year old dad has HCM and has endured persistent Afib for several years. He has had a few strokes (despite being anticoagulated) and was on amiodarone for several years. His current doctors have stabilized the a-fib, and they have taken him off the amiodarone and instead replaced it with sotalol for the last few years with good success.

    Lately, though, he had been getting weaker in the legs, culminating with two falls last week causing lots of broken ribs. He is now in the hospital, and tests show a significant amount of neuropathy in the legs, which is being attributed to the sotalol, which he must take to control the arrythmias. He is very depressed, as you can imagine, since he can't walk without assistance, and is facing having driving privileges revoked along with a walker for constant use. They are afraid to change the meds, because he cannot tolerate A-fib.

    Any thoughts?
    Daughter of Father with HCM
    Diagnosed with HCM 1999.
    Full term pregnancy - Son born 11/01
    ICD implanted 2/03; generator replaced 2/2005 and 2/2012
    Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

  • #2
    Re: Sotalol and neuropathy

    I don't know anything about this, but I want to wish him the best of luck figuring things out. Let him know that your friends are thinking of him.

    Reenie
    Reenie

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

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    • #3
      Re: Sotalol and neuropathy

      Cynaburst

      I don't know about his disease with his legs but i wanted to let you know i am thinking of you and him, My father is 88 years old and has just recently had a heart attack and i live 1300 miles away and my doc feels the trip would be too hard on me right now, he is ok and at home just wanted to see him and see for myself that he is ok

      Best of luck to you

      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

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      • #4
        Re: Sotalol and neuropathy

        Dear Cynaburst,
        I know how your 72 year old dad feels, as I’m a 72 year old dad myself. I only had one stroke (so far), but I was just in the hospital from Sunday night through Tuesday noon, going in with extreme dizziness. I had to hold onto the walls to get from room to room, - along with a roaring headache. (I am now getting three to four headaches a day.) They did an MRI and said it wasn’t another stroke – but there was something there that should be evaluated by a neurologist. (Whoopee). I just got an appointment for November fourth.

        As far as the legs go, (and they are going) I can’t walk much, and I already told everyone that I had bought a scooter to get around on. My legs hurt just about all the time, but I think the problem with me is the degenerative arthritis. It is a cute, small, relatively inexpensive scooter that fits into the trunk of my car when I am going someplace, and gives me mobility again.

        I can imagine just how your dad will feel, wobbling around on rickety legs and having to mess around with a walker. I have a number of friends that use them, and you can’t go very far or very fast with the silly things. Maybe your dad should consider getting a scooter also. You can get an attachment to hold the walker so you can take it for when that’s needed, and you can scoot around when going from place to place, visiting friends, shopping, or whatever. It is a great boon to your freedom and independence. I recommend it highly. If you’re interested you can IM me and I can give you the details. I already owe you one.

        Shirley, I think your situation with your dad tends to indicate to me that maybe it’s time for the two of you to get picture cell phones. That way you could see each other and talk together, and really find out how you are each doing.
        Burt

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        • #5
          I am also suffer from Afib. I am 62 and have had it for 21 years. I convinced my cardiologist to switch from Flecainide to Sotalol this year because I was developing neuropathy and leg weakness. I took a one month break between the two drugs and started to feel better, but shortly after starting the Sotalol, the symptoms came back. Recently, as the Sotalol was not working very well to stop the Afib, I had a catheter ablation done, but the surgeon says I still need to take Sotalol until we see if the ablation successfully eliminates the Afib. I can still get around, and even do light exercise, but compared to my activity level before (can't work in the yard or around the house anymore), it is like being partially disabled. What is frustrating is that the cardiologist and surgeon are both skeptical that Sotalol could cause these symptoms, yet the neurologist I saw said, "it's all over the literature". I'm wondering if others have experienced these symptoms from Sotalol.

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          • #6
            Hi Jonura,
            Welcome to the board. Posts like this can easily get lost, partly because it's an addition to a thread that was last commented on 12 years ago! Why don't you go to the "Hello! My name is!" forum and introduce yourself there?

            By the way, one suggestion: ask your neurologist for some references to give to your cardiologist. And bring copies of those papers to your cardiologist. I wouldn't expect them to immediately say "Oh, yes, you're right!" but if you show them that something is known in another subdiscipline, they might begin to think about it.

            Gordon
            Myectomy on Feb. 5, 2007.

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            • #7
              I have experienced similar effects since starting sotalol in 2015 - hands/feet/mouth extremely cold/heat sensitive with intolerable pain to the cold/heat, more swelling of joints, feeling of heaviness in legs, low blood pressure, extreme problem with falling asleep quickly when not even tired, couldn't mow lawn for even 10 minutes
              without extreme fatigue/lightheadedness
              (I'd been mowing the same lawn for over 40 years with no problem) - when I checked blood pressure during these mowing episodes, it was always low, sometimes as low as 89/63. I did not have any of these symptoms prior to ICD implant in 2015 and starting metropolol, then sotalol. Cardiologist did not think these were med related. I asked if blood pressure could go too low and he said, if it does, I would just pass out. He didn't seem to be concerned. I am 63 and was concerned in possibility of falling. I also have a very odd thing happen if I fall asleep on couch watching tv. Sometimes, when I wake up, everything looks a very golden yellow color temporarily but goes away shortly. Cardiologist suggested I talk to eye dr and eye dr had no idea. In June 2018, I again complained of the low blood pressure/lightheadedness and inability to walk any distance or mow lawn. We decided to try 1/2 dose of sotalol to see what happens. Within 3 weeks, I could mow entire lawn (takes about 1 hr and 40 minutes) with NO problem. Blood pressure did not drop so low, and now I have much less trouble with heat/cold sensitivity in hands/feet and none in mouth. I am also not so pain sensitive, my hair started growing at normal rate, fingernails started growing again, eye brow hairs that were almost completely gone above 1/2 of left eye have started growing back and back pain that I had been going to chiropractor for 2 years (tried 2 different chiros) is now gone (I stopped going to chiro last Jan when not making progress - chiro said the adjustments were not holding and everything seemed like my system was in hyper-sensitive state). Now I can easily walk a mile or more (prior to sotalol dose reduction, cardiologist said I should consider I was out of shape!). My skin color and muscle tone has been returning to normal and I am no longer getting little pinpoints of red dots on skin that turn into moles (2 different nurse practitioners had a name for these spots and said age-related but now I'm doubting that). I'm having a hard time believing that all these symptoms are NOT sotalol related. Last year in March at yearly physical with nurse practitioner, my cholesterol levels had sky rocketed even though I had been diligently improving my diet. She suggested statins but I had read that sotalol can affect lipid levels and wanted to wait until my cardiology appt in June.
              I'd read that sotalol also depletes the body of CoQ10 - a key need for mitochondria function. At my appt in summer of 2017, I asked cardiologist about this as well as if there were other vitamins/supplements I should be taking but he did not advise use of supplements - said research shows they are ineffective and I shouldn't waste my money on them.
              I decided to try the CoQ10 in Mar 2018 and really did not expect results but started taking it regularly. At this summer's appt with cardiologist I told him I had started taking it but he did not make any comment. I asked about the effect sotalol might have on cholesterol levels and he said it shouldn't affect them that much. (I had a calcium heart scan and it came back, showing a 0, which is the best score). I'm not feeling very confident that I am getting accurate information from him. I asked about dietary suggestions and he casually mentioned the Pritkin diet. This was the appt where he agreed to cut sotalol dose in half. With the CoQ10 and reduced sotalol, my side effects started to reduce greatly, as listed above, but are not gone...was it the sotalol decrease or theCoQ10, or a combination of both that contributed to the improvements? Depending on the results of my ICD readings and next appt in July, I may ask to discontinue the sotalol completely. I am on very low dose of 40mg twice daily - don't know if he will approve. It's been a frustrating journey...

              Comment


              • #8
                RD, Welcome. this forum is fairly quiet but the HCMA has a very active Facebook group should you care to join. About your experience.....The first thing that strikes me is the attitude of your cardiologist....it feels to me like there is not a lot of respect for the symptoms you have reported. The role of medications in HCM is to improve quality of life not decrease it. I see you live in Minnesota..... If it were me , I would take a trip to Rochester and Mayo Clinic’s HCM Center of Excellence and have an expert evaluation and conversations with a different cardiologist.
                Here is my personal experience with beta blockers and COQ10. I tried 5 different beta blockers and each of them made me fatigued and one of them made me severely depressed. I take no beta blockers but have found that Verapamil a calcium channel blocker works quite well to reduce symptoms and relax my heart muscle a bit. Awhile back when I was on statins, I read the info on COQ 10 being depleted by statins..... and started taking it. My cardiologist did not outright recommend it but gave a nod of agreement to the increasing evidence of its value. I also found that certain brands actually made me feel “ hyper” and I had to change brands......I also found when I stopped taking it for a few weeks, I started gaining water weight....a sign my heart was not quite as efficient .....
                Most of the objections doctors have to supplements are that they are unregulated and quality differs from one manufacturer to another ( as I experienced). Thus studies that are done only apply to the brand used at the time.
                Trust yourself, trust that you know how you feel, there are reasons in HCM to stay on a beta blocker or calcium channel blocker even at low doses..... but discuss this with your cardiologist,HCM specialist. Blessings.
                Last edited by JillC; 01-22-2019, 03:08 PM.
                After years of symptoms:
                Officially Diagnosed HOCM 2006
                Myectomy 3/11/13 at non-COE
                Extended Myectomy 7/23/14
                At Mayo with Dr. Joseph Dearani

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