Lightheadedness

I am 6 weeks post PM instillation. Back to work and mostly getting by, but still find that I do not have stamina. I tire easily and, in fact, I am expereincing lightheadedness(slight dizziness). I am walking 45-60 min. (sometimes more) everyday and find that if I walk briskly I feel lightheaded. Is anyone else dealing with this? I am thinking that this lightheadedness might have something to do with my lower chamber pace rate? I am wanting to tell my pacemaker team that maybe I do not need my ventricular lead paced. I told my Dr. that I had slight headaches, dizzy spells during the day, no stamina and a hard time sleeping. He basically told me that I need to be patient and give more time to adjust to pacemaker. I am really finding it hard to be patient because it seems to me something is not right here. Patience is a virtue, but I am not sure this is the virtue I possess. Thanks all for your support


10 Comments

The more I think about it...

by heckboy - 2008-04-14 02:04:01

The more I'm annoyed. Your PM should be adjusted to you, you shouldnt be told to adjust to your PM. My free advice is to go in to your Dr and remind him who works for whom. Your PM has functions that can be reprogrammed... your body doesn't.

chris

Settings!

by heckboy - 2008-04-14 02:04:40

I felt the same way after my PM replacement. I could feel the PM working by checking my pulse, but I felt bad walking up hill, etc... They did timing adjustment and it was like night and day.

I am at 7 weeks.... with you...

by Swedeheart - 2008-04-14 02:04:44

Hi Bobbie48,

I arrived at week 7 since implant today. I am retired so thankfully I am not trying to get back to work. However, I do not have the stamina I had 6 months ago prior to my beginnings of heart block. I still experience lightheadedness often. Up until week 4 or so I felt that way all the time, now it is only part of the time. I am walking about 30 min a day, but it is no power walk... I get pretty tired if I try to walk faster than a normal rate.

At my first (and so far only...) post-op visit they told me that my "exercise" rate wasn't turned on. In otherwords if I get my heart rate over 130 my pacer will kick in and I suppose calm it down... Up to now I haven't had the energy to get my heart rate up past 100!

I have been keeping a log of my symptoms along with my activity level and blood pressure/pulse to take to my next visit which is in June. I find I can get through the day if I take it slow and do "normal" things for me. I get up and fix breakfast, do the dishes, then decide what chores I want to try to accomplish for the day. Then I go at them slowly and easily... take rests now and then. My only solace some days is that I am improving, but ever so slowly...my log that I keep has helped me realize I am making progress by reading my notes. However, it does take time during the day to write it all down.

I find some days I am better than others, for no apparent reason. I am very impatient... I want to feel like myself again... I realize I will, but the "misleading" ideas the doctors told me that I would feel better right away was a "snow job"... I think they mean well by trying not to worry us, but I'd rather the truth be known. At least now I have a vague idea of how it will be like down the road when the whole replacement PM/battery will happen.

I imagine your doctor is right. If you are trying to work a full day at week 6 (I know many do...) you are interferring with your body healing time. We can only do so much at once. So, going back to work may slow down the process... I've had some folks tell me it took them a year before they felt on top of it all. Years ago, with my first child, I had a c-section. My doctor told me then it would be 2 years before I would be really back to "normal" because I needed to both heal and take care of my baby. Told me it took a lot out of one. He was right. Naturally one feels better in a month or two, but I remember when my son was 2 I did feel like I could take on the world again!


Do you have a dual chamber pacemaker? I do, and I know my pacing at my checkup was small. So I don't know if my symptoms of being tired are from the pacemaker or surgery.

At any rate, I am sure my posting isn't giving you the encouragement you might need and I am sorry for that! But, I did want you to know you aren't alone and I don't think these symptoms are unusual.

I know it is frustrating! As a senior citizen I don't want to "give it time".... I don't have as much time as someone who is 20! I have a lot I want to do before my time is up! But, realistically, I am glad to be here and have each day even if I don't feel as good as I would like.

Swedeheart

Same

by Jules - 2008-04-14 05:04:08

Hi

I had the PM fitted in January. I felt very much the same as you, no energy, headachey and very lightheaded. Slowly but surely I am getting more energy back, I have started cycling, playing tennis and small runs. My headaches tend to be in the am only and the lightheadedness on the occasional day when my blood pressure is low.

I have a dual pacemaker. I had the settings changed twice thanks to this site and ElectricFrank. I went to the first one armed with information about not wanting the rapid response on, and lowering my base rate.

I am now set at base rate 50. No rapid response and the voltage turned down to the minimum, again thanks to the info on this site.

I get the odd very depressed day, insominia now and then but things are getting better, and as I have been told I must learn to trust the PM.

Hope things improve with you. Always ask this site about any feelings of anxiety you always get a good answer.

Jules

Patience

by susanspurs - 2008-04-14 08:04:05

Hi Bobby48
I'm 10 weeks today and can honestly say that last week was the first week I started to feel like I was getting back to normal.

I have secondary heart block which was only happening at night so I didn't have any symptoms. But as soon as my dual chamber PM was fitted I became breathless - even just speaking, people were saying that I sounded out of breath. My cardiologist ran all sort of tests to rule out blood clots etc but kept on saying that it was very unlikely to be anything to do with the PM!

With loads of help from this site I found out about the rate response switch and my cardiologist told me it was on but it couldn't be anything to do with my breathlessness. Anyway when I went for my first PM check at 6 weeks I got them to turn it off and my breathing returned pretty much to normal. Although I know I have lost fitness as I had two operations around Christmas and then the PM so I have work to do on that.

But last week my breathing seemed to feel better than before the PM. I go to watch football (soccer to most of you on this site) and my seat involves going up eight flights of stairs! And last week I was only a bit out of breath - much better than ever. I am also feeling much less tired and the pacemaker site is at last not bothering me much any more. There are now times in the day when I do forget about it. I still have a problem that needs addressing - pounding in my neck and chest which was happening most of the time but now is happening less often.

So it does seem like we do have to be patient. They tell you so little about how you are going to feel and I honestly thought I'd be ok in a few days as it is only a minor operation under local anaesthetic - not a proper operation. I work from home so it has been easier for me than someone else who has to get back to a 'proper' job.

Sorry this is a bit long - but a few weeks ago I actually thought I would always feel, breathless, tired and that this was it for me. Please give it some more time but in the meantime do go back to your doctor with your concerns.
Good luck.
Susanspurs from London

It 's frustrating!

by bambi - 2008-04-14 10:04:54

Hi Bobbie48,
I love [heavy on the sarcasm!!!] when the Dr. says one's symptoms can not be from the pacemaker! Of course it is! If it's the fact that your unique settings haven't been set right yet, or the fact that your body is trying to adjust to the surgery, and new device in your body, then what else could it possibly be? I have found over the years that Dr. lingo of" it's not the pacemaker", means that the device is "ok". Sort of like buying a pair of shoes that don't fit. There's nothing wrong with the shoes, but they won't work for you because they are too big or too small or make walking painful because they pinch your toes! You have to say very clearly that while you appreciate the fact that they put a brand, spanking new pacemaker in you, you don't feel right! They must take the time to find settings that make you feel right and ready to carry on your lifestyle. Be pleasant but persistent. Once they find settings that seem to work for you, that may not mean you won't need further adjustments in the future. Your body and lifestyle may change, and your settings should reflect any changes. Don't get discouraged, but don't give up either! Take care of yourself,
Bambi

lightheadedness

by bilcal - 2008-04-14 11:04:43

I was experiencing similar occasional dizzy symptoms and asked my Dr if he could reduce Carvedilol ( a beta blocker) dose. He did so to try it and I believe it does help.

Lightheadedness

by Smart Redd - 2008-04-14 12:04:00

I've had my ICD since 3/13/08. Nurse told me my headaches (mine were light but always in the background) were probably due to my heart pumping better and sending more blood through veins that were used to a smaller capacity. That they should go away eventually as my body adjusts to the change.

She was less certain about the cause of my dizziness. Thought it could have been from lower blood pressure - I might need to decrease my meds - but then I shouldn't have headaches. If I have headaches I shouldn't be dizzy.

The end result? Nothing was done. I guess I'm waiting to 'adjust'.

I think my allergies are beginning to act up so I truly cannot tell if the headaches I now have are from the ICD or sinus. Neither can I determine if my dizziness is still from the ICD or from the beginnings of an inner ear problem caused by allergies that results in BPV. [sigh]

Redd

Are you getting a copy of the report

by ElectricFrank - 2008-04-15 01:04:05

The best way to discourage a doc from just passing off your concerns is to request a copy of the pre and post checkup reports. He knows that there is written documentation that shows what he is doing.
Call his office and request copies of all the previous ones. Some of us here can help you understand what they say. Call is a half of a second opinion.

frank

Love this site!

by BorgijoDunlap - 2017-02-22 12:29:28

I am 35, had my pm placed 2 mos ago. I am very active, weights & running. I am very thankful to have a doctor that has encouraged me to get adjustments until I feel my "normal" again. I have a Boston Scientific dual chamber pm. What really helped my feelings of my heart beating faster than the energy I was exerting, & breathing hard was my activity level. They had me set up for active but bumped it to athlete and adjusted the level to 10(level goes up to 16). Did a half marathon last week, & felt almost my 100%. I'm going in today to have it bumped to endurance but keeping a level 10. The nurse that does the adjustments wasn't sure what to do last time, so she had the rep come in to assist. Don't get discouraged, if you don't feel right, ask for an adjustment. Have a great week!

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