How Many Hours of Sleep Do You Average Most Nights?

[carol-volckmann]

Good topic Jen. If I am able to get 6 hrs of sleep I can function till about 3:30 after that I am done in. I try to nap for 20 minutes if I can – power nap. I especially do that if we are going to a friend’s house for dinner. Fortunately our friends know that the longest I am able to hang in there is 8pm. The next day I am worn out.

I do take Tamazapan to help me sleep but, it doesn’t do very well – but without it, I won’t get much sleep.

Sleep is so important for us so I am very interested in what others have tried that have worked for them.

Sleep well ???? tonight (I hope).

[jen-cueva]

Hi @cdvol3gmail-com, I am right there with you. My body post-COVID is often ready to crash by 2 or 3 PM. Often, I cannot get a simple dinner fixed on those days.

I have started to work on rest more at that time. Even if I cannot fall asleep, closing my eyes and zoning out helps me, too.

Most days, when Manny gets home about 5 or a little after, I am half asleep.

Last night I crashed on the couch at about 8 and woke up to my night med alarm at 9:30. I fell back asleep, and at 11 PM, Manny woke me up to go to bed. He said I was out hard.

Anyone else tends to do this too?

[Colleen]

@cdvol3gmail-com I’ve actually been doing really well taking Melatonin, or so I thought. It definitely helps me achieve a restful sleep without feeling hungover in the morning, but I think it might be adding to GI issues. Whenever I take it I notice my GI symptoms intensify. I read some reviews where people claim this has happened to them when taking Melatonin.

Has anyone else experience this? Really disappointed because it was really helping me sleep at night. Now I’m back to staring at the ceiling at night.

[jen-cueva]

I am sorry, @colleensteele, as I know, you said the melatonin was helping you. It is frustrating when one medication benefits us, but the side effects are less than desirable. GI issues are no fun; I hope that you can find something else to help you sleep.

You are an amazing caregiver, and mom and sleep is crucial for you, too.

Once you are done with your GI tests, maybe ask the GI doctor what they think and suggest any other supplements to help you sleep.

[jill-upshaw]

Colleen, I had a friend that took Melatonin and had some really bad side effects. She did sleep but when she woke up, she acted confused and not with it. Also, some GI symptoms. She quit and the symptoms went away.

[Colleen]

@upshtcx I’ve stopped taking it. I didn’t experience confusion but I do think my GI symptoms worsened when I started taking it. It’s a shame when something helps one thing but negatively effects another.

[jill-upshaw]

6 hours is my minimum but 8-9 is so much better. I do good to get 6 hours and I am always dragging. If I actually get 8-9, I have so much more energy and a better outlook on things. I wake often with pain and bathroom calls. I don’t really have any suggestions. If I nap, then I don’t sleep well at all.

[jen-cueva]

Hi @upshtcx, I, too, need 6 hours minimum, but prefer 8-10. I, too, find that I wake up most often with pain.

My pain doctor recently increased my night pain meds which helped for about a week. Now, she ordered a topical cream that she hopes to help with pain when my oral meds don’t.

What pain most contributes to you not sleeping?

In the daytime, naps are difficult for me. I close the blinds or wear an eye mask to make it dark; that helps some days.

[jill-upshaw]

I have gout, pseudogout and arthritis so it can be anything. Lots of joint damage. Chest pain and or discomfort. I sleep better on my right side but it runs me to the bathroom. I keep it dark with fans plus my oxygen and CPAP so it is noisy in there. I have a very soft adjustable bed that helps a lot. I can change position easily and it has vibrating settings that help me dose off. I also have bone spurs in my neck so it wakes me up too.

[jen-cueva]

Oh my @upshtcx, I am sorry that you have so much pain throughout your body. That certainly impacts your sleep. I, too, have chronic pain and gout that hurts like heck at times.

You know that feeling all too well, I am certain.

I, too, have an adjustable bed but no massaging or vibration. That would probably rock me to sleep. Well, unless I am nauseated and want the bed to be still.

I wake up often with pain and move to the couch. But some nights, with my pain medication and creams, I tend to sleep several hours before waking up.

[jen-cueva]

Hey @upshtcx, how has your sleep been? I thought of you last weekend as I had a gout flare and remembered you experiencing that painful complication. Thankfully, it’s resolved at this time.

[dawnt]

Hi Jen. I’ve had issues with sleeping since my late teens/early 20s, and I think mainly because of that I struggle getting up and moving in the mornings. I like to get 8-9 hrs of sleep a night, preferably closer to 10 hrs. I usually have a couple/few nights weekly where I toss and turn for hours. I am currently working on making myself get out of bed if I’m not asleep within 15/20 minutes of going to bed, then trying again once I feel I could go to sleep. It does seem to help.  I am usually so anxious for sleep that I take far longer to get out of bed than 15/20 minutes. A decent night for me is 6+ hours, the nights that really make me drag the next day are the 2 hours or less nights.

I do nap sometimes, but usually only on the weekends. I don’t do well with short, ‘power’ naps. I like 1.5-3 hour naps! I do tend to fall asleep on the couch at times, especially if I did outside work or after the farm on Saturdays. With the medications I’m on, there aren’t many options for sleeping pills but at least with the cpap I feel much better when I get a decent night’s sleep. Before my sleep apnea diagnosis/treatment it didn’t matter how long I slept, I was always exhausted. They told me after my sleep apnea testing that for every hour I thought I was getting sleep I was actually only getting about 20 minutes.  What I really love are those nights when I go to bed, and wake up the next morning in the same position I started in and don’t even remember falling asleep because it happened so fast!

 

[jen-cueva]

Hi @dawnt, happy to see you post again. You have been missed.

My hubby sounds like he has sleep apnea but will not get tested. On workdays, he gets about 5-6 hours of sleep. He often makes up for it when he is off by sleeping until 8-9.

So many who have sleep apnea say that they wake up rested so much more once they start using their CPAP. It sounds like you have that feeling, would
that be correct?

I like the suggestion about getting up if you toss and turn for a bit. I did that often before COVID. I have not tried that since. I love those nights that you describe. I think those nights offer the best sleep.

I also love to wake up thinking it is later than t is and feel rested. Do you know what I mean?

[jill-upshaw]

I used to have a huge bathtub with a large TV. When I got bad with the gout, I would take very long soaks with the jets on, drink lemonade and watch TV until it somewhat eased. I can’t do that anymore at all. My tub is little and I am too weak to get in and out. I have thought about a walk-in tub but not sure I could stand the heat anymore and don’t want to waste the money. But that is still a thought. We just have to do whatever works for sure. And what works today may not work tomorrow…..just do the best we can.

[dawnt]

I definitely know what you mean Jen! Feeling really rested on less sleep than you thought you got is always great. The cpap took some getting used to, but it’s so worth feeling better. Those days of sleeping as much as I could because I felt so tired even after what I thought was a good night of sleep were so draining.

 

I tried replying to your post from yesterday about how I’m doing, multiple times, but keep getting the error message ‘your reply cannot be created at this time’.  I’m doing ok, but had a disappointing appointment this past Tuesday. Was hoping to be able to switch back to a portable concentrator that has a higher setting than the one I used before I had to switch to tanks. Didn’t get through even half of a six minute walk test with the portable before they stopped it due to my oxygen levels going too low. They also did a walk test using my oxygen tank, and found I needed to change from 4 lpm to 6 lpm to stay in the right range. That concerns me, but didn’t surprise me due to how exhausted I was getting when I’m doing much of anything, but I have a right side cath coming up so we’ll get that checked out.

 

I also wanted to say to @carol-alexander that while I totally understand feeling embarrassed with the physical limitations/changes of medical issues, we are still the people we were before these issues. Medical issues or not, we are all just doing our best to get through our lives. I wish for you to take away the burden of undeserved embarrassment from yourself.
<div></div>

[jen-cueva]

So, for some reason, last night, I only slept a total of about 5 hours. Three of those were after 5 AM. Has anyone else struggled with sleepless nights recently?

It’s not easy to function as usual without adequate sleep. So, I may need a nap later. But the sun is shining, and I’d rather be outside. Maybe a cat nap in my swinging chair on the patio or by the pool.

[Colleen]

@jenc it is probably the prednisone causing your insomnia. For me that is always the worst side-effect, more so than the constant hunger. I don’t know if you are still taking it but even if you aren’t, it’s been my experience than it can take at least a week or 2 for my body and mind to return to normal. Sometimes I think the side-effects are worse for a while once I stop the prednisone.

I hope you sleep well tonight. If not, you have my number!

[jen-cueva]

Hi @colleensteele, I thought it might be related to those little devilish pills; I finished them on Sunday. However, my infusion also consisted of a small dose of steroids. I’ll also get the second one this Sunday. So, I’ll be happy when that’s done, and those can flush out of my body.

Thanks, I did sleep a bit more last night. However, I took Ativan before bed, so that probably helped. I would have probably popped in here and texted you if not.

How many hours of sleep do you usually get, my friend?

[Colleen]

@jenc I have no sleep routine. I’m all over the place and I know it’s not good for me. Some nights I crash and will sleep hard straight through to morning and other nights I just can’t sleep at all. I do tend to take at least one, as @cdvol3gmail-com calls it, power nap a day.

I know it’s not for everyone but melatonin does work for me. I haven’t used it in a long time but I was just thinking last night I wish I had some. I have to make sure I don’t take it too late though or I am groggy the next day.

How do you or any of our forum members feel about melatonin?

You know what else works for me – Sleepy Time Tea BUT it gives me acid reflux. No idea why but it does. Has anyone else tried it and have the same problem?

[carol-volckmann]

Hi Colleen,  unfortunately melatonin does not work for me at all. It does help my husband.

I have been taking Temazapan which does help me but getting a full 6-7 hours is always catch as catch can. I have tried other sleeping meds – didn’t work. This is NOT a solution for everyone, the side effects can be  harmful. So, you really need to talk to your doctor about any of these sleeping meds.

Power naps do help me as long as I do not go over 20-30 minutes. If I do it means I went into a deeper sleep and for the rest of the day feel like I am in a cloud and do not sleep well that night.

It is so important that we are able to get the sleep and rest that we need and yet so difficult to find the solution that works for us. I am not sure what the answer is.

Here is getting to sleep and staying asleep for a good 7 hours tonight! We can hope!

[jen-cueva]

Hi @cdvol3gmail-com, it sounds like you have your sleep routine down for the most part. Do you struggle more with sleep when you are sick with a recent virus or have PH or scleroderma flares?

I suffer from disturbed sleep when fighting off a virus or infection or experiencing PH flares. During those times, my breaths became shallower and more labored during the night, even with my head elevated and my oxygen.

Humm, I think I just found a new column idea. I hope to give in to more power naps. Although I find after I’ve recently been fighting colds, bronchitis, or other complications, I go from sleeping extra to trying to “make up for lost time.” But I do need to work on this struggle.

[carol-volckmann]

Good morning my friend, We all know how important sleep and rest is yet so difficult to find that magic bullet to help us get a full 7 hours os sleep ????.

I have not tried Sleepy Time TEA- not a tea drinker, but t sounds like worth to try it. I will also give Melatonin a try again.

To answer your question, when I am sick as in cold, flu, intestinal bug I am able to sleep away the day but have a restless night. With PH flare-up, I don’t sleep at all well so just try and rest with my head up pretty much in a half way sitting position.

Medical docs will tell you sleeping meds can cause dementia, my answer is … so does lack of sleep. So, what do we do? Wish I had an answer.

Have a good week Jen and let’s hope we are able to get some rest and sleep – you too Colleen!

 

[jen-cueva]

Hi @cdvol3gmail-com, I’m grateful that you have found the best medication to get adequate rest. Many do find that Restoril (temazepam) works well for them. I take a tizanidine low-dose tablet at bedtime. This is mainly for muscle spams since COVID, but I find it does help me get to sleep at least most nights.

I recently asked my psychiatrist if she thought I should try to ,stop it, and she says not if it also offers the benefits of sleep, plus I continue to have random muscle spasms.

Yes, I have heard that many sleep and anxiety medications may cause dementia. Recently I read they thought OTC antihistamines like Benadryl could also cause dementia. However, lack of sleep can cause it too and may be harmful to those around us, hehe.

I did want to share this article from Harvard that was done severl ye,ars ago where they didn’t have enough evidence that these medications cause dementia. Maybe this will help us all rest better.

I hope everyone gets better rest this week. Take care of yourselves.

[carol-volckmann]

Thank you Jen for sharing that article that Harvard Medical did on sleep aids. That was really helpful.

Temazapan has worked for me better than any if the others. It is not 100% by all means but I will be more cautious and be aware of symptoms that I am losing it – of course by then I probably wouldn’t know it ???? he he! Certainly is a 2 edge  sword ????. XXOO

 

 

[jen-cueva]

Hi @cdvol3gmail-com, I’m grateful that you found the article helpful. As you mention, it is a double edge sword as so many medications are, and we have to pick and choose, right?

Too funny; if we begin losing it, we won’t even know, right?

How are you, Dick, and Cloud this week? Take care, my PHriend.

[carol-volckmann]

Dick and Cloud are doing just fine and I am doing OK. Had Cloud at the vet for a check up. This 6 month old is 60 SIXTY lbs!!! No wonder he can pull me over – working on that! Thanks for you good thoughts and always your encouragement ❤️

[jen-cueva]

Wow, Cloud is already 60 pounds at six months; he is such a big guy and will be much larger, right? How much do they think he will get? You are tiny, so I bet he almost pulls you down, sweet PHriend.

It’s nice to hear that you and Diock are doing well. You’ve had some challenging days recently.

You’re an essential part of the forums; we miss you when you are not feeling your best.

 

Thinking of you and hoping you all have a relaxing weekend ahead. I have some news to share soon; stay tuned. 😉

[Colleen]

@cdvol3gmail-com is Temazapan a prescribed sleep aid? I have an internist appointment tomorrow (Tuesday) and might ask her about it. It might not be safe for me, as many things aren’t because I have Long QT syndrome. I have to be very careful and check with my cardiologist before taking anything, but it never hurts to ask.

[carol-volckmann]

Yes, Colleen,  Temazapan is prescribed as a sleep aid and it does help both Dick and myself. Good to ask your doc. Others I know have had sucess with Ambian – it just did not work for me. Good luck – hope you can find what will work for you ????????❤

[jen-cueva]

Hi @colleensteele, if not temazepam( Restoril), maybe she can add something at a low dosage that you may benefit from. Sleep is necessary, and you deserve it, my friend and FWW.

I’m sure you continue to stay on high alert, Colleen so when you are awakened from a deep restful sleep, you struggle with getting back to sleep. If you’re like me, that’s when you begin tossing and turning and thinking of the many tasks you could be doing and get up.

I am thinking of you as you see your internist. Is this an appointment you already had, or is something else going on by chance? I’m sending you positive thoughts and prayers. Please do keep us posted on how things go. Are you planning to ask to see a new rheumatologist, BTW?

[jen-cueva]

Hi @colleensteele, BTW, I don’t believe that temazepam has a warning that long QT syndrome, but certainly check and see which sleep aid your internist suggests you try. Especially with your sensitivity to medications, I know she will begin with a. baby dose; that’s how I start on many medications, too, LOL

[jen-cueva]

Hi @colleensteele, I have not tried melatonin, but I know others who have benefited from it, like you. I know it takes time to build up enough in your body to see much difference. Do you have that problem when you use it as needed versus nightly?

I love Sleepytime tea by Celestial Seasonings. My late MIL always had that in her pantry, and I picked that up from her. I’ve never experienced acid reflux. I believe it has chamomile in it, right? That’s usually the opposite effect in most. However, we all know that what works for some doesn’t work for others.

I’m sorry, and yes, crazy sleep schedules are never good. Some herbal teas have something in them that does cause acid reflux in some people. Maybe you’re part of that group.

Have you always struggled with sleep? Or did this begin after Cullen was diagnosed?

[Colleen]

@jenc and @cdvol3gmail-com I actually never heard of melatonin until Cullen received his transplant. They actually prescribed it for him. He eventually stopped taking it because he didn’t feel like it was working for him so he figured…one less pill! Like you said Jen, everyone is different. I also have 2 friends who have said it does nothing to help them.

I think it’s more common than not that it takes a week or 2 for it to become effective for people but it always works for me. I think I’m like Cullen, super sensitive to medications and even supplements. His PH doctor used to always say, “The good news is Cullen responds very quickly to treatments and the bad news is, Cullen responds very quickly to treatments.” It always made titration and adjusting to side-effects difficult.

Anyway, the problem I have with melatonin or any sleep aid is if I get woken up once I’m in a deep sleep then I can’t get back to sleep again. I think it’s an adrenaline thing, going from knocked out to suddenly alert. For this reason I always beg my family, “I’m taking melatonin, PLEASE don’t wake me unless it’s really necessary!”

[carol-volckmann]

Jen, Colleen may have hit the mark. If you are on prednisone it may very well be the culprit. When I do not get my 6 hours if sleep it also is a real bummer the next day. I try and take a power nap – 20 minutes no more than 30. If I go beyond the 20 or 30 min mark, it will be difficult for me to sleep that night. The trick of the 20 min power nap is you don’t go sound a sleep, you kind a hang out resting in semi sleep. It really does help. Good luck my dear friend and I hope also, you sleep well tonight! ????

[jen-cueva]

Hi there @cdvol3gmail-com; well, it’s been a while since I’ve seen your post. Are you feeling better this week?

I crashed about 15 minutes before dinner last night, which helped, but like you, I did not have my usual minimum hours of beauty rest(6-7) and was worthless the next day. I should have gotten about 6 hours last night.

Thanks for the positive thoughts and suggestions on sleep and naps. Yep, when I crash for hours, I tend not to get rest that night unless I’m exhausted or just sick.

[hall-skara]

I recently upgraded my Apple Watch to an Ultra. This means that the battery life is good enough to track my sleep incl other vital data.

So according to my watch, I slept on average 7 hrs and 10 minutes each night last week. My resting heart rate was 48 and my average O2 was 94.6 %

Sometimes I get tired during the day and take a nap. Yesterday, I got tired as I was going to the gym and took a little nap in the car outside the gym before my workout 😉

[Colleen]

@hall-skara it is so amazing what technology can do now to help patients maintain their health and advocate for it! I’m a little afraid of this one because I know I’m probably crediting myself for getting more sleep than I actually am!

Your nap before going in to workout is a perfect example of how we can fit power naps into our day to day. Thank you for sharing that!

I have a “funny now” story to share about a power nap in my car. It was many years ago prior to my son’s transplant. His PH was not doing well, I was working full time and it was baseball season which kept me very busy with my other son.

I was an administrative assistant at my church which was connected to my kids grade school. I could barely keep my eyes open after work one day so while waiting for my kids to finish an after school activity I closed my eyes in the car and fell into a heavy REM sleep!

Next thing I knew I was being jolted awake by banging on my car window. It was our parish priest (aka my boss) and a terrified student! The child thought I was passed out or dead!! I’m still between laughter and embarrassment when I think about it!

Anyone else experience a similar situation?

[jen-cueva]

OMG, @colleensteele, I am cracking up laughing at that story! Too funny that the poor kid thought you were dead! At least the kid was concerned. I was expecting the banging on the window to be your boys, not the Priest, your boss! What a story that must have been. Did that one stick with you and at work for years?

I’ve never had an experience quite like that, LOL.

Thanks for sharing; I believe this is the laugh of the week winner!

[jen-cueva]

Hi @hall-skara, it sounds like you get some pretty restful sleep at night. I love that you use the smartwatch to track these things. Manny, my hubby keeps saying I need one, however, I keep thinking it may not be worth it with the cost. However, on days I work out and am curious about my sleep and vitals, that sounds helpful.

What is the cost of the Ultra edition, if I may ask?

Thanks for sharing this example with us and also the type of Apple Watch you are using. Do you share this data with your care team? Is there some way to download that data or does it only save it for a certain period of time? Sorry, I’m not into those tech gadgets, so not savvy.

I love you had a quick nap before a workout. It’s funny, I don’t think I could nap before a workout, but afterward, my body is totally ready. That sounds like a great idea.

Thanks again for sharing your experiences with us! We appreciate it. Have a wonderful day, my PHriend.

[hall-skara]

The Ultra is quite expensive. I see that it costs 799 dollars in the US. (It is even more expensive in Norway.)

Yes, I get good sleep every night. I usually don’t have an alarm set and sleep as long as the body requires. It usually gives me around 7 hours of sleep. (I used to sleep longer before, but I have noticed that I need less sleep now that I am getting older.)

The data from my watch is automatically stored in the health app on my iPhone. It’s stored there together with exercise data, my estimated max VO2, how long I wash my hands on average, etc 🙂 I studied computer science back in the days, and love all these gadgets. The watch also takes my EKG which I find very useful. I sometimes have irregular heartbeats, and can then make a record of them by doing an EKG when I feel that I don’t have a sinus rhythm. I’ve shared these charts with my PH doctor and find it very useful. The irregular beats turn out to be mostly harmless extra beats.

I often nap in the car. I guess I get sleepy by the heat and the comfortable seats 🙂 I got a great car – American actually. It’s a Tesla (top seller in Norway – about 90 % of all new cars sold here are electric) and with the seat all declined, I sleep like a baby 🙂 About 20 minutes nap, and I am good to go again.

Have a great day too!

[carol-volckmann]

Hello Hall, saw your post and your mentioning having pre beats – extra beats) sometimes. Your PH doc may very well be right – nothing to worry about.

My husband, Dick, has had them for quite awhile. When they started getting more frequent he saw his Cardiologist who also said it may be nothing to worry about BUT, made an appointment for Dick to have them checked out to see exactly what and where they were occurring. As it turned out his were located in a spot that is okay. If they found the area was in a different area it would have been a serious matter and they would need to go in a kill the spot  that was causing them.

Your post caught my attention and thought I would pass this info along if you have not seen by a Cardiologist.

All the best, Carol V

[jen-cueva]

Hi @cdvol3gmail-com, thanks for your concerns and for sharing your experiences with irregular heartbeats. You make an excellent point that we should investigate these symptoms to be sure they are not more serious. I’m grateful that Dick’s was in a harmless spot; we need his ticker in good shape to love you.

[jen-cueva]

Hi @hall-skara, wow, it’s more pricey than I thought! That tells you how much I am up to date on those things. My hubby would know; he is a tech gadget guy.

I am concerned about your irregular heartbeats. Was this your cardiologist who said that yours was harmless? I know they can tell at times by the EKG, so hopefully, that was a heart doctor. However, I love the date it offers, which can be helpful for those of us with any medical condition.

Fascinating that you find you need less sleep as you get older. I always thought the opposite. However, I also know many older adults with sleeping difficulties, which causes a decrease in sleep. Thankfully you don’t have that problem.

Aww, those Telsas are comfy! My neighbor has one, and they are like sitting in a recliner in the living room. I told him I didn’t need to be that comfy driving because I would want to take a nap.

That’s interesting that 90% of Norway’s cars are already electric. Of course, we have many more electronic and hybrid vehicles here in California than I saw in Texas. They are so entirely, too.

Thanks for sharing your experiences, and your 20-minute cat naps have been effective for you.

[hall-skara]

@jenc My health problems started by the end of the 90s. I started noticing irregular heartbeats. It became increasingly worse, and eventually my doctor managed to detect atrial fibrillation at an EKG. In 2003 I ended up doing two ablations in order to fix my problems. The ablations helped. However, I became short of breath and I was eventually diagnosed with PAH two years later.

They went back to look at my echoes, EKGs, etc. to see if I had signs of PH before my ablations. They found no evidence of it. So my conclusion is that I was predisposed to PH all my life, and that the ablations triggered it.

So I am well aquatinted with irregular heart beats. I know how flutters and flimmers feel like, and the recent irregularities don’t feel like that. And EKGs confirm it – the irregularities are caused by extra beats. These are, for the most part, totally harmless. (Most healthy people have a lots of them on a daily basis too.)

It is not unusual, according to my doctor, for PH patients to develop irregular heartbeats and atrial fibrillation. This is often caused by a growing heart due to the PH and this influences the signalling inside it.

I think it is quite normal to sleep less when one gets older. I definitely do. I sleep 1 to 1.5 hrs less now than when I was 20-30. (I’m 64 now.) However, I still sleep like a baby 🙂

Norway has the highest rate of electric cars in the world. The aim is to have all personal cars sold in 2025 be electric. There are a lot of great incentives to buy electric cars: no tax, lower insurance, can drive in bus lanes, pay less in toll road, etc. And with water power as an electric source, they become very environmentally friendly. So about 90 % of new cars sold are now electric. As old cars are replaced, the total percentage of electric cars will raise. According to numbers from 2022, there are about half a million electric cars in Norway out of 2.9 million cars in total. (Norway has a population of about 5.5 million people.)

[jen-cueva]

Hi @hall-skara, thanks for sharing more about your long history of irregular heartbeats. I have several PHriends here who have ablations every so often, which helps theirs for the most part.

You’re correct. Manny with PH does have afib and irregular heartbeats. I am one who also experiences that. So far, mine have also been harmless. However, as your medical team does, my PH team monitors that frequently. Like you, I’ve had it so long I know when it’s the usual or something more.

Isn’t it nice we finally start listening to and learning more about what’s going on with our bodies? This again reminds us that each of our bodies reacts differently to everything.

Wow, thanks for that educational update about electric cars in Norway. California as a state is trying to do something similar.

Hall, what career were you in before your PH diagnosis? If you’ve shared previously, forgive me, I can’t recall.

[Colleen]

@jenc that is exactly what happens to me. If I’m abruptly woken from a deep sleep than my mind decides it’s time to go into overdrive!

Let me start off by saying, “I’m fine!”. My internist appointment was unexpected. When I went to bed Saturday night I thought something was rubbing against my neck. Thought it was the cross on my necklace. I went to fix it and felt a lump on my neck between my jaw bone and ear. Was pretty sure it was my lymph node.

No pain, wouldn’t have known the lump was there if my hand didn’t graze over it – and no symptoms. A little concerned, I made an appointment.

My female internist wasn’t available so it was a man I haven’t seen before. Before as much as touching the lump he was leaning towards probable cist from hormones because of my age. “Has menopause been on your radar” he asked.

He looked surprised when he felt the lump and said, “Oh, it is your lymph node!” I had to hold back from sarcastically asking, “A hormonal lymph node”?

Anyway, it moves when touched which is a good sign that it’s my body fighting an infection and not Cancer. He explained Cancer usually latches onto something and doesn’t move.

I don’t know what infection I’m fighting since I don’t have any symptoms. The doctor said these normally disappear in 3 weeks. If it’s still there after that time than he will need to send me to a specialist to have fluid removed and tested from it.

Never a dull moment!

Anyone else experience this?

[jen-cueva]

Hi @colleensteele, I’m incredibly grateful that you’re “fine.” My mother and Manny hates that answer when asked how I am feeling; Hehe.

Hormonal cysts are also common. Most often, these are in the groin area, but they can be in other areas. Most often, I hear about lymph node cysts after infections, but also any allergic reaction. Weren’t you sick right after Cullen came home? Maybe this could be from something that was going on then.

This is a common occurrence, and I haven’t experienced this, but Manny and KK both have. Yes, they quickly move around. But it if gets any larger or doesn’t resolve within a few weeks, certainly let them know.

And yes, unfortunately, we share that mind n overdrive struggle when awakening from a deep sleep. Did you happen to ask him about a sleep aid?

[randolph-reynolds]

Just for the heck of it I’ll chime in.  Sleep is necessary but how much is needed varies.  Years ago while in the AF I was responsible for coordinating the arrival and launch of 24 fighters to Germany from a base in North Carolina.  The other man who was to help me just went to the bar with some old buddies.  Just as well, he was rather clueless.  In three days I got four hours of sleep.  Obviously I didn’t fly one of the jets over but rode on a cargo aircraft.  When I arrived in Germany I crashed. My phone kept ringing so I pulled the wire out of the wall.  Someone came banging at the door saying I HAD to attend the general pilot briefing.  A forced means to adjusting to jet lag.

Now going to bed at night is a routine that I’m never sure of its outcome.  Last night I fell asleep almost immediately (after 30 minutes of reading in bed) but woke five hours later. Now to go back to sleep was almost impossible and after lying there for twenty minutes I took .5 mg of clonasepan.  I awoke when my wife turned on the light at 6:20.  I’m always groggy until I can get my exercises done.  Now the night before I had trouble  because I had terrific site pain and got up to take some pain killer. I was finally asleep about an hour later.  Waking up my anxiety will creep back into action.

The best bet is for me to have a busy day and be really tired.  But no matter what it takes about 90 minutes of routine after I get up to be really awake.

I think Colleen’s story about falling asleep in the car.  That happened to me in Italy.  I had drunk too much expresso and was the designated driver.  We stopped for lunch at a cute little village about three hours after my continental breakfast.  I was sitting on the edge of a bench when suddenly I felt like I was going to pass out.  I went out to the car and did just that.  Caffeine had worn off.

Cheers

[jen-cueva]

Hi @ripple76, you share some important thoughts. “Sleep is necessary but how much is needed varies” is undoubtedly something we all should remember. Just because someone can go on 3-4 hours of sleep doesn’t mean our bodies will.

As I’ve mentioned, my minimum is about 6 hours. Otherwise, I’m worthless the next day. Naps are tricky for me. Some days, I am exhausted and know I need a rest, but it doesn’t happen. On other days I need a long nap of several hours. So, not only does the amount vary, each day is different, as many of us experience.

I’m sorry about the site pain. Is that better today?

LOL, I love the story of your nap in Italy. Expresso will do that to you, hehe.

[randolph-reynolds]

Hi Jen

Sometimes this web page plays tricks on me.  It wouldn’t post my first version of this message because it read “This is a duplicate” so I added whoopee and it worked but then both versions showed up.  I think the Forum Page Site plays with me.

Your sleep problems are like my wife’s.  When she doesn’t get a good nights rest she is tired in the day but can’t actually nap.  On the other hand I can. Usually I’ll just fall asleep so I set an alarm to keep the nap sort.  Yes each night I can’t predict how long I will sleep before I have to get up and use the bathroom and if I can’t get back to sleep in 20 minutes or so I take that little bit of med.

As to my site pain, I had to change the infusion pump site, the pain and the fact that I was at my six week limit (on average) forced that decision. It has been a week and the pain has gone down from eight to four or five.  Usually it will settle down to being un-noticed after eight to ten days.

Appreciate your monitoring how us folks are doing.  (I am not referring to Biden’s folks.)

Best

Randy

[jen-cueva]

Hi @ripple76, I’m sorry that you feel like the forum’s website is playing tricks on you, hehe. At times, if you click it too fast, I have found that it posts a duplicate for me. Then I go in and delete one so It doesn’t confuse anyone like myself.

Aww, yep, it does sound like your wife is more like me with naps. However, Manny is more like you and can nap easily. This weekend I bet he took two naps, and he can be out for longer if I don’t wake him up. It’s great that you set alarms for your naps. I would do that before when I could nap easier.

But then Manny and my care team told me I needed to allow my body to rest, and it would let me know when it has rested enough. I don’t think I could do this because I would be upset if I slept half the day. I have to be having a tough PH day to allow myself to rest that much.

You mention waking up to go to the bathroom. Last night I awoke at 12:45 after less than 2 hours in bed. I then tossed and turned for about two more hours. Just as I thought I might get up, I guess I fell back asleep.

I’m sorry you had to change your site, Randy. Grateful that your pain is not as bad and hopefully will be almost unnoticeable by the end of the week. Six weeks seems to be a reasonable length of time between site changes. I’ve to know PHriends who can only do a few weeks.

Do you and your lovely wife have any plans for Valentine’s Day tomorrow? Take care, and thanks for your patience and for sharing your experiences, Randy.

[jimi-mcintosh]

Hello, just had to put my 2 cents in this subject. Prior to getting my new Bipap, I was getting 2-4 hrs sleep on. Cpap and 4 liters oxygen. Sleep meds, melatonin, dark cherry juice and cranberry juice.  Sleep study # 2 and a Bipap, took a year to get it properly calibrated and immediately went to 6-8 hours sleep, reduced oxygen to 3 liters.

Good news is that I finally met all the requirements for a kidney transplant and now waiting for final evaluation at the donor transplant center. My PAH is still moderately stable,

[jen-cueva]

Wow, @jimi, excellent news! I know this has to be somewhat overwhelming to be prepared to be listed. However, it has to be exciting; that’s a huge step closer to your kidney transplant. Please do keep us posted on how things are going.

Take care – what w huge Weekly Win! Congrats, Jimi!

[Colleen]

@jimi way to bury the lede! Meeting the transplant requirements is HUGE news! Congratulations! Please let us know when you are officially listed. How are you holding up with processing this news?