Just a quick one about little things that can affect us

[DawnTX]

I had my follow up on Wednesday as I mentioned I’m still not 100%. My heart failure is going to be checked out next month with an echo. The doctor wants at least a month to give the pacemaker a chance to do some magic.

My EP does not just treat the heart as if the person does not exist. After our conversations about the pacemaker at Cetera, we spoke about mental health. Oh I know they need a new word because mental health makes people scared but it’s anything depression sadness whatever it’s just a name. he asked if I had anything for anxiety and I do. I also have some thing for chronic back pain until I can have my back surgery that has been stopped almost 2 years now because of a fib. Until I can get cardiac clearance, nothing can be done.

So a month ago when I had my pacemaker fitted, I had decided to clear my body of anything other than medication’s from my EP pretty much. My anxiety and pain meds are to be taken as needed. I decided I didn’t need them that badly and I didn’t want anything to confuse my recovery or lack of. It was my idea no one else. My EP said maybe I need. Both of those meds more than I think I need them and he wanted me to try. I took the anxiety one I need to figure a different time slot. It knocked me for a loop. Early morning I took my pain med as directed. A few hours later I realized I was almost zooming around the house without pain and mentally feeling so much better because I had no pain. Because of people who abuse medication‘s it is almost made to be a dirty word these days. They are very hard to guess which is silly at my age I’m not about to go out and party and what I take is not that strong. I have turned away, morphine I don’t like it. Working law enforcement, I have views about drugs that other people may not agree with. And that goes for all drugs that are considered illegal. Well today is my second day taking my tramadol. That’s what I’m on. It’s a synthetic. It’s about four hours now. And yes I feel good again. Yesterday it lasted until almost midnight so a full 12 hours on one dose even though I can actually take one every six hours if I want.

I just thought I’d share this my doctor said many unanswered questions about a fib may actually be unanswered because it is coming from a different place in us, such as anxiety or pain. He doesn’t put us in a box and mark it OLD PERSON. He believes we all should have quality of life and not have to wait long for it if it can be helped sooner. It is because of his way that I have my pacemaker and for two days in a row I can tell you I’m feeling really good. My heart rate was lowered to 70 next stop 60 for a resting heart rate 70 feels good no unusual something or anything else I forget because it’s been so long but I think I almost feel normal.

Please don’t let stigma of being human meaning, mental health, depression, etc. keep you from feeling good and taking medication‘s prescribe to you because you need them. Make sure they feel right to you because some can be over prescribed because you have a fib. I have no doubt you know your body, I have become so aware of mine since getting a fib and flutter. Don’t be afraid to try new things or old like medication you should be taking. If it doesn’t feel right talk to your doctor maybe they can adjust it so you still get help but you feel like yourself.

This is just the journey of TexasDawn L O L but I feel so close with so many of you. I want to at least share in case you think. Hey, that sounds like me. Let me try that. Don’t do anything major without talking to your doctor. I would never change meds or anything else without his OK, I asked about supplements Co a 10 and turmeric, and they both have his blessing he said the co q 10 may even make me yell better. He spoke of the turmeric and said there’s nothing really proven that it works. I’m not sure why he originally thought I wanted to take it but I want to try it for inflammation. I told him that and he said he had no problem with it at all, there can be some deadly combinations of so-called natural supplements, so please be careful. A perfect example is digoxin which you can buy as foxglove, and it is also known as digitalis.

Be smart I want you all out here with me sharing your ideas and if you don’t do things right, I would really miss you

[Auriculaire]

I was prescribed Tramadol by my surgeon after hip replacements. It does kill pain really well and my GP has continued prescribing it because I have a crushed disk in my spine . But I try to avoid taking it as much as possible and haven't had any for months now. It upsets my digestion which I worry will provoke my afib. Worse after even one pill when it starts to wear off ( like you it lasts about 12 hours) I get itching of my skin that interrupts my sleep - a bit like a junkie! So I only take it when we go on holiday - we always go on our motor bike and at our age even a journey of about 4 hrs on the bike can be challenging for creaky bodies. I would like to be able to take it more often .

[DawnTX in reply to Auriculaire]

I had been on it for about five years following an accident in which I was hit by an 18 wheeler while I was sitting at a red light and he rear ended me. Since then I had c 3-6 disks done on both sides of my neck. I had a constant migraine until that was done and was unable to turn my head. I have one more disk. It is in my lower left but they cannot do an ablation because a nerve is caught up and wrapped around my hip somehow. To ablate it means I would not be able to walk. My last doctor spoke laminectomy which I was going to have done when I moved here to Texas. Unfortunately, a fib struck with a vengeance, so no surgery etc. without cardiac clearance which is not possible yet. My AP seems to think if everything continues as well it is now, I may be able to have my back done come the fall. Of course I’m not sure if I will be ready for it. I am so tired of hospitals and doctors and more. No doubt you understand. I also have severe spinal stenosis and arthritis throughout my spine.

Today was my third day taking my tramadol in the morning and today was my third day of feeling great. I don’t think I’m feeling great as in high I never found tramadol to affect me that way. What I have noticed is how easily I can move around without pain. I did not realize how bad it was until I stopped it the past few days.

If I had the situation you did with the itching I would not be able to take it. I only take it in the morning even though I could take it every six hours. I think that’s overkill. My EP also wants me to take my anti-anxiety meds that he feels I need more than I realize. He obviously is detecting something that I do not. Team Both of these meds are prescribed to take as needed. So I haven’t been taking them. I didn’t think I needed them. The problem with my anxiety ones for PTSD is finding the right timing. I may look for a different type. These really knocked me out. I have to take them maybe early evening when everything is done that I need to do. otherwise I would sleep around the clock. When I have my PTSD/anxiety, it is a hell that only others who have had it understand which is why the meds are so strong. I think I need something somewhere in the middle

I took myself off of the tramadol the first time because they were not working as well as they had been so I took them more often. One day I was afraid I was running out and to be afraid of that told me I was developing an issue. I went cold turkey it wasn’t that bad. I was offered morphine I really don’t like that and I can see why people have such a problem getting hooked on it and very fast. It only seems to last about 15 minutes and it’s either have pain or have more morphine and that is ridiculous. There are people that need it like that. And my mom‘s last day or two of cancer she needed heavy morphine. Those situations are a lot different than my bad back.

Thank you for writing. For the past three days I’m finding I’m sleeping like a baby and waking refreshed, which is very unusual for me. My hope is once my back is taken care of if it can be I won’t need pain meds, the more meds I can get rid of the better.

please be good to yourself and take care and stay healthy

[Auriculaire in reply to DawnTX]

I found the same about it not working as well / lasting as long when I took it after the second hip op. I went to every other day and in between took paracetamol with opium powder that my GP had prescribed before the ops for the pain in my hips. The combo worked nearly as well as the Tramadol for killing the pain but again I got the bloating and digestive problems. So after about 10 days each time I just stopped the meds . I could not do much anyway after the second op as I had to remain on the walker or 2 sticks for 6 weeks. I am ok moving around doing housework or gardening but the disk pain gets really bad when I am standing preparing dinner in the evening . It refers into my left hip and down the front of the leg. You have really been through the mill- I don't blame you for not looking forward to a laminectomy! You are right - the less meds the better. At least you seem to be coming to grips with your afib.

[DawnTX in reply to Auriculaire]

Yes, my left hip also down the front, especially around the groin area muscles hurt me like I can’t explain. All the way down my left side from the hip. I have no feeling in my leg. It is as if it is made of rubber yet I get burning in it but to touch it I feel nothing.

Todat was not a great day with pain from my back. I was up much earlier than usual so I took my meds earlier and I threw everything off I think plus we had rain again and I always feel the weather. We just got over a week of horrendous rain storms nonstop.

Funny, but my a fib is almost nonexistent right now to me. I feel so much better since the ablation and pacemaker. My EKG was great according to my EP. Now it is waiting to find out what my heart failure is doing. Before the ablation and pacemaker the only thing I really was excepting was that I didn’t know why I was still alive. It was that bad. I tried to except a fib, but I couldn’t except not being able to walk or do anything. Who wants to live just needing to sleep or lay down all of the time and not be able to do anything without pain. The crushing chest pain and nausea, along with dizziness and the feeling of blacking out without blacking out made me finally want to give up. I just showed myself you never know what is around the corner and I could be really good. That is how I lived life until afib and atypical flutter and heart failure got so bad. Whether it was taking a train or a bus or just going to the grocery store I always thought of things is adventures and you never knew who you might meet etc.. This was probably from working law enforcement because that’s how my job really was changing minute to minute life changes in a heartbeat and with a fib we certainly prove that.

Best of luck with everything. Don’t count like I almost did not that I would do anything stupid I just wanted to close my eyes and not wake up. Remember you have possible good adventures around the corner😛

[ozziebob]

Following up previous Posts, Replies and PMs, did you get a chance to ask about Vitamin D?

[DawnTX in reply to ozziebob]

I have not because I have other things still going on next month. We will talk about meds after we get my echo back to see what my heart failure is doing. Thank you for remembering me.

[ozziebob]

There was a Post yesterday that mentioned a short 15 minute podcast by a Californian Dr Gundry on Vitamin D that you might find interesting. Here's that Post ...

healthunlocked.com/afassoci...

The podcast (Dr Gundry podcast) is easy to find and download.

[DawnTX in reply to ozziebob]

thank you I will have to check it out. I know it’s important. I also have heard. There’s a question now about a fib but I also wonder with the pacemaker and AV node ablated. I know I still have a fib in my body but I wonder if I have to be concerned about it anymore. I will have to talk to my doctor about that to find out if a fib triggers can do anything now that I feel, I am protected with the AV node ablation and pacemaker.

[ozziebob]

Vitamin D is involved in systems throughout the body to maintain health, not just arrhythmias like AF. Significantly it regulates inflammation and the immune function.

Low Vitamin D is implicated in cardiovascular conditions, autoimmune problems, neurological diseases, infections, diabetes, pregnancy complications, and certain cancers, including breast, prostate, and colon. (according to a list quickly found on the internet)

And it lowers mortality risk as shown in this study I've posted before ...

medscape.com/viewarticle/98...

So my recommendation is general health advice, not specifically related to anyone's AF.

[123lbs]

hallo Dawn, you have had some serious issues with pain in your neck, back, legs etc so I expect you have had to take some strong medication to deal with it all. I can only say as far as I know I don’t have any heart issues and my pulse is good which I check every day. I was put on Tramadol for my back and hip pain because various other pain killers that I had taken in the past were not available on the NHS now because of worries about addiction etc. I had taken Diclafenic with my first hip problem about 8-9 years ago and I found it to be really good but doctors are not able to prescribe it now in the U.K. so I had to find something else for my second hip problem which was so much worse because of arthritis and the fused together of bones in my lower back.

The Tramadol helped but I was taking 6-8 a day with paracetamol and they kept the pain manageable although I couldn’t stand or walk very far at all. After the 2 nd hip operation the pain just didn’t go away and the doctor said it was because of my back and they might be able to operate to relieve the pain. However after a visit to the physiotherapist and exrays an operation was ruled out so I was left to manage my pain best that I could. After a couple of months as the pain from my hip operation declined I was able to drop down to 4 Tramadol a day but need more supporting pain killers to suppress the continual pain I was in.

Today I take 4 Tramadol and 4 paracetamol with 1,10mg Amitriptyline twice a day. That still doesn’t take all the pain away but it helps. I also use Volterol every morning and the combination works all the while in sitting down or just doing a bit of walking around the house doing various chores. I still use my walking stick a lot of the time.

I do sometimes get some side affects from the Tramadol but they aren’t so bad as to stop me taking them. I do get the itching at the back of my head but i’m not convinced it’s from the Tramadol. Every now and then I get a sleepy day but think that’s because of the combination of pills I take not just down to Tramadol. I rarely get constipation from taking the pills which is a surprise to the doctors because it is a common side affect. I’m going to have to continue a while longer taking pain killers but hope to be able to cut down on the Tramadol in the coming months. I do also have a bit of trouble with my balance but I don’t know exactly why as it could be a combination of things. It is nearly a year since I had the hip operation last May 20th to be precise but I think because of my age 80 years now and not really able to go out during the Winter months it has taken me much longer to get fit again. The physiotherapist said I will always have to use a stick so I’m not really surprised.

I would just mention that my husband has up and down blood pressure and is on 3 pills a day to try and keep it under control but he also has the same issues with his back that I have and the doctor has given him Tramadol too. However he has far more problems than I do due to taking it so is limited to 1 or 2 tablets in 24 hours so they aren’t having much of an affect on his back pain so I think he may have to come off them soon.

Overall I think that everyone is different and some people can’t tolerate the same medicines that others take with no side effects so it could be a trial and error thing but taking various different medicines every day can’t be good for any of us and it best to try and manage the pain with exercise if possible.

I hope this helps you a bit Dawn and anyone else that’s got the same type of problems. Good luck to everyone.

[DawnTX in reply to 123lbs]

Actually, I have not taken anything other than tramadol for pain meds I am not sure if I told you there’s always a result of being hit by an 18 wheeler. While I sat at a red light minding my business. Some thing I forget to tell people is, I had a little niche on the door of my car, that my toe part of my shoe fit on perfectly. I had developed a very bad habit of setting that way which means I hyperextended my hip and leg which is fine sitting but not when a big heavy truck half loaded with stock rams you from behind. I am pretty sure that’s how I damaged my left side. There is a nerve somehow wrapped within my hip. I am sorry you have dealt with so much you have much more than I do. I have learned to live with this. I could not walk in the beginning and use the cane. I underwent therapy and it did help even though I hated it. I also had a new laser red light therapy that had just come out at the time at the hospital. They had one machine shared amongst a few areas. Now you can actually buy these things yourself. I think if I had one of my own at the time I would be in a different place now. It really did help. I would go in barely walking, and after the treatment I could walk out. It didn’t last more than a few weeks, but just like afib but like, anything it was a blessing.

I did not have a high dosage of tramadol like you, but I was getting Cortasone shots at the time. I did take it more often than I should have nothing crazy maybe a second one during the day. Now I can take up to for a day if I want but I don’t want to. I only take it in the morning and it stays with me until around midnight, which is fine. I wait until I am up again before taking it even though it’s hard the first hour or two in the morning. I guess I did not realize how much relief I did until I took it again.

You just told me some thing that I had not heard about before. It was the itching of the back of the head. I have been blaming pollen and my cats and even my own hair and shampoos. Sometimes my scalp is sore to touch and I couldn’t understand why. I believe you just told me. Wow, see how we can learn from each other here.?

When I moved here to Texas last year, I was going to get my laminectomy. Unfortunately, I did not have the time to get it in Florida and then I would not have had my doctor to recuperate with. It made more sense to wait and start with a new team. While I was packing up the house, I was getting the beginning of a fib at the time it was mainly breathlessness by the time I got to Texas the end of October it was horrendous. It did not help I lived in a hotel for about six months where you could not just rest it was always someone banging on the door to do something supposedly for you when all I wanted to do was be left alone . I was waiting for my insurance to change and see the doctor I had planned on meeting with in Houston. It took until March to be able to do that. At the end of April I had a VOM done vein of Marshall by the pioneer of it let’s just say nothing, went as planned, and the doctor let me down. I went downhill from that, and into tachycardia until October when I finally found a wonderful doctor, and then he P through him that was the beginning of my journey back to feeling like a human. I will be glad when I can get the back done but I need cardiac clearance obviously. Right now if things stay or get better, my EP is talking possibly Sept I have held off this long, just knowing at some stage I can get it done is good enough for me right now. A very close friend of mine as well as my cousin have both had it and they said when you have the laminectomy it’s almost instant relief. No that doesn’t mean I can get up and run lol but it does mean I am going to do so much better and be able to get off more meds, which is my goal. One of my friends messed himself up and just had another after 20 years because he is a semi pro golfer, and think about how they swing that club I think I’m gonna do great. I probably will want a break from hospitals for a while though lol.

Thinking of you I wish they could find something else for you to give you more relief since a fib I am finding to be grateful for the little things. Right now I am grateful for a huge thing which was my doctors and my pacemaker becoming available when not very long ago it was not one that could help me. You can have lemons or lemonade it’s up to us which we choose. I like lemons but I like lemonade more.

[JOY2THEWORLD49]

Hi Dawn.

Tramadol I understand is strong morphine. It cost $1 each tablet on script.

It is not a 'mental health' pill but a pain killer.

I was given a few pills for an incision under my foot to remove a cyst. 12 stitches.

It made me sleep long. I understand it is addictive.

cheri JOY

[DawnTX in reply to JOY2THEWORLD49]

Hi Joy tramadol is a synthetic opiate. Some doctors laugh and say it’s not very strong. It was, however, changed to a more serious drug class a couple of years ago. I found it was more that it stops working and you need more as compared to other things that are addictive. I stopped taking it because it just was no longer working. I was using aleve which is naproxen it helped just as much. Perhaps they have a different strength there. I take a low one. It actually cost me nothing with my insurance. I can take it four times a day as needed but I don’t do that. I take it in the morning 12 hours later it is just starting to wear off for me. Morphine is a whole other animal not to be messed with, I guess it also depends if you are an addictive personality. They have tightened up so much here. Doctors are afraid to give you almost anything. I am well aware it is not mental health. I am on duloxetine for that as well as lorazapam, which is the strong one and difficult to get from most doctors without a good reason and proof. I I just went back on tramadol. I have had a bottle since October and still have some left. My EP feels the pain is what is messing up my heart rate right now and my anxiety and PTSD also. I had stopped taking both because I didn’t want anything to confuse the results of my pacemaker. He feels I need my meds more than I think I need them because the directions are as needed. It’s hit or miss but right now, the tramadol is what helps me just once a day. otherwise I feel as though I have a fib all over again with the total body feeling horrible. I know it’s not afib. Taking the pill shows because it would not help that. I am still not really taking the lorazepam. It is very potent unless I take it mid evening I would just spend all my time sleeping. I tried it again yesterday and took a half a pill before bedtime and that helped. It’s horrible when we are dealing with this thing and have other issues. I want to get as medicine free as possible. Thank you for all your help.

[JOY2THEWORLD49 in reply to DawnTX]

My Tramadol is 2007 drug!

Try OXY-NORM I was given with Paracetamol after last op.

It took away the pain.

I knew it wasaddictive so used it for 3 days post-op.

I hate that I can't have my Ifuprohen. Even 100mg works.

cheri JOY

[DawnTX in reply to JOY2THEWORLD49]

I am in the states we do not have the same options. I don’t know what the drugs are that you mention, but as I said earlier, it’s very difficult to get anything for pain even at my age. My GP is very good, but everything is tracked on the doctors and I guess it just makes them nervous. He was generous with my tramadol this time I’m not really worried about becoming addicted the way I take it at Cetera and once I have the back surgery hopefully I will not need anything. I do take Tylenol and my doctor does not even have a problem with me taking Aleve/naproxen. I try to keep away from that because it bothers my stomach. I just went back on tramadol a week ago and once it wears off, I can barely walk again because of my back so right now it is a necessary evil. I know that you have even an over the counter that has codeine in it. I wish we had that. I have taken that when I was in the Bahamas. I don’t remember the name but it was incredible. Just what I needed not too much. I think many of these things are kept from us to make money on the other things. Big Pharma is greedy and hurts a lot of people. Pricing on some is outrageous and we have a tear system so depending on the tier is how the price is determined.