Hot Flash Forum!
Comments
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Blownaway: my thought on not getting hooked on sleep meds, is to not take it every night. Take a Xanax (or whatever) every 3rd night,, or even every other night. Yeah, the off night you may not sleep well, but you'll probably sleep good on the night you do take it. I took Ambien every night years ago, had a horrible time getting off of it. Could not sleep at all w/o it. So it was a rough time. I do take the gabapentin every night for the nerve pain, but anything that I take solely for sleep, I won't take it 2 nights in a row. Just my thoughts on this.
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Thanks Glennie - I've got some Ambien but only take when we visit hubby's family in Virginia one week of every year. Grandfather clock, mantle clock, banjo clock....oh how those people love their Westminster chimes......
There are some milder, otc sleep aids out there that I might try. Right now, I take 10 mg of melatonin at night - I was having some relief by taking Benedryl at night also, until my daughter mentioned the possibility of it causing dementia.
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I have taken a combo of melatonin, theanine and valerian root which works well.
Scottie
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One thing to remember about melatonin.....start with the smallest amount. Sometimes larger doses will have the opposite effect that you want. I found 0.3mg dosage on Amazon. This was the smallest I could find anywhere. Most stores carry 5-10mg, sometimes 1 or 3mg. I found 0.3 to work quite well.
Another thing to keep in mind....my doc said I shouldn't take it over a long period of time. He said maybe a month on then a month off. I followed that schedule till one day during the month off, I realized I didn't need it any more. I think I just got far enough through my surgeries and anxiety that I quite worrying so much about the BC.
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Thanks ladies about the otc sleep aid ideas. The last time I was at my cancer center, I was offered a sleep study - I'm going to do it just to see how much sleep I'm actually getting.
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Blownaway, I did a sleep study about 10 years ago. It was very enlightening. Turned out I have alpha intrusion in my delta sleep,, so my brain thinks it's awake when I'm asleep. Explains why I'm so tired when I wake up,, brain is awake all night. It is weird to sleep with all the electrodes on, but I say, go for it.0 -
glennie - other than to tell you what your problem was, did they do anything to correct it?
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I did a sleep study when an ENT was looking down my throat and saw I have narrow passageways. While they have the room set up looking like a bedroom with decor and all, it was still hard to sleep. You have probes all over (like what you have getting an EKG). They had to give me strong sleeping pills and even then I took an hour to sleep.
I was dx'd with obstructive sleep apnea. They gave me a cpap machine, which I can't use because with that tube and all, I'm up worse not being able to sleep than before. So I put it aside.
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I have had horrendous HF about 6 times a day - not at all during the night. They are so bad that I am dripping in sweat and whoever may be sitting next to me on the train looks at me as if I have some horrible disease. They started after I had my hysterectomy 4 years ago (BRCA2) and taking Tamoxefen. I have been taking Effexor for the 4 years. When I forget to take it even one day, I feel fine except that I get the oddest most vivid dreams. Now that I have breast cancer again, my doctor is talking about switching from Tamoxefan and maybe I won't need the Effexor. Have any of you stopped taking Effexor and how long and what was the process. My doctor told me she would help me with this but I just wanted to get an idea.
Thanks,
Sharon
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Blownaway: he gave me doxepin for sleep, which is one of the older antidepressants. It seemed to help but then I developed a SE,, urinary retention ! So had to stop. One needs to be able to pee,,,, kinda important.Sharon: wean off Effexor slowly. What dose are you on?
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Sharon- Wean off Effexor even slower than what your doc says. Hopefully you won't feel much of the crap most of us have gone through with it, but if I had to do it over again, I would have tried weaning off of it twice as slow as what the doc was telling me to do. GL
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Artista928 - If all they have to prescribe is a cpap machine that no one I know ever uses except on Halloween - I see no need to do a sleep study. I was hoping for some real answers. My insomnia started with menopause/divorce about 16 years ago. It was really really bad at first. Believe it or not, I was getting by on 3-4 hours of sleep per WEEK, starting a new job..... Most nights I did not sleep at all. I started dating at that time and often turned down dates because I was so tired - he thought I was playing hard to get.....(we are married now).
I started taking Tylenol pm, which gave me anxiety attacks during the day and eventually stopped working anyway. Benedryl has been my answer for years but I recently heard long term use causes dementia, so I stopped it. I have also stopped the 10mg of melatonin as someone on this discussion suggested, in the hopes that when I start it back up in a month or so, it will work better. My mom has an addiction to sleep meds which makes me afraid to go there.
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I'm so glad to hear all of these posts on Effexor. MO mentioned at last visit that I should try it if the Gabapentin wasn't working well enough on my HFs. I was against it because of weight gain issues, but now I'm adamantly against it. When I get HFs, I don't sweat just feel like I have a dry burning fever. Drinking ice water, even in the middle of the night, cuts them off. I can live with that,
Blownaway, have you tried valium on occasion to help you sleep? Maybe it only helps post surgery as I'm using it for now. I do totally understand going to work on 4 hours of sleep.
Scottie
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Had a terrible time into menopause 10 years ago because of hot flashes & insomnia, so used a low does of estriodol which was very effective. Enter BC and they took away the good drugs. I'm not hormone positive so don't take the anti-hormone meds, but it's still back with a vengence.
I have hot flashes constantly. During the day they are a pain. I get drenched but can deal with it. At night is terrible. I wake up about 20 times a night. Sometimes just to move & dry out, most of the time I'm awake enough to check the clock ( which is always disappointing), and several days a week I'm out of bed at 4
About two months of this now & I'm exhausted all the time. Makes dealing with BC stresses that much tougher.My gyn started me on Relizen, a subscription supplement. Is anyone using this? Apparently it takes about 4 months to get going.
Also wonder if cooling pads & pillows help...
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I use Valium for sleep twice a week. Don't want to take more often as I don't want to get used to it and have it stop working. Same with Benadryl. Some nights I take nothing except the gabapentin and just hope for the best,, knowing that I'll take a Valium within a couple of days and get some sleep then. Terrible way to do it, I suppose, but not sure what else to do.Blownaway: they prescriber the CPAP machine if you have sleep apnea. Since you are not sleeping at all, I wonder if you also have alpha intrusion. If your insurance will cover the sleep study, you may want to give it a shot and see what the issue is. After my own personal Ambien issue, I understand your reluctance to try any of the sleep meds.
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Horsegirl - ditto, I took Premarin for about 12 years for hot flashes. I am estrogen positive and had to give it up cold turkey April 2014 when b/c was dxed. At that time, my kids bouught me a small personal fan that clips onto the headboard and a cooling pad. It contains a gel type substance and during a night sweat those are my 2 go to aids. I dont know how the pad stays so cool just lying on the edge of the bed but when I wake up hot, I pull it over and lay on it, when the hotflash has burned out, I slide it back to the edge of the bed for next time. You can't stay on it all the time, it has to be cooled off between uses.
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thanks blownaway, that's helpful to understand. I rock & roll all night, so I could make that work. Will have to check them out.
I may try the idea of rotating in tylenol pm a day or two a week to start. It's really taking a toll on me. Getting beyond cranky & distracted, no ebergy for tge activities I love most. Think i'm so sleep deprived that it warrants forcing some deep sleep. Just afraid I'll wake up in a saturated bed, freezing.
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Blownaway- I've taken Ativan for both sleep and anxiety before- a 2 for 1. Take before 1 am if you need to get up like at 6 to get going on your day. Time for it to clear out of your system. If you don't take something every night for months, you won't get addicted. So you may want to try it on the nights where you must get some sleep vs every night. That's what I did. I was on it like this for months and don't need it now- and sleep fine.
Scottie & Blown- Flexeril works great for friend for sleep in addition to her muscle tension from stress alone. She's out and fast. Loves it. Another thing she really likes for sleep is pot. Medical pot is legal in CA so this not only relaxes her but makes her sleep. That combined with Flexeril and she's in sleep heaven.
I have a lot of ice packs ready to roll in the freezer. I have one specific for the neck that you wear that works pretty good for that region. I have this in my freezer with the fabric, not just the ice pack itself.
http://icycools.myshopify.com/collections/ice-and-...
On Jackbirdie's suggestion, I bought this for body parts cooling when laying down. This are thick so it should last a loooooong time before you have to change it out. It's flexible enough to conform to you. Can't ever imagine using it for heat though! I have 4 in the freezer now.
http://www.amazon.com/gp/product/B0048GT80U?psc=1&redirect=true&ref_=oh_aui_detailpage_o01_s00
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Artista. . .I had a bad reaction to Flexeril years ago from a shoulder injury, so can't take it. Valium however, which I'm on now for my EX surgery, really does help. Thanks for the tips.
I should add that Dh and I have a portable AC in our room (have had one for years), it also functions as a dehumidifier. We run the AC at night and I have a tower fan pointing directly at me as well as s ceiling fan right over our bed. You'd think I would be freezing. Tamox + Lupron combo is nasty.
Scottie
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Yeah Scottie, I have a portable a/c too. I already run on the hot side and I haven't started anything yet, not even menopause even though I am in peri at 50. It normally doesn't get a lot of workout here cuz N. Cal, Bay Area, doesn't get so hot like other areas here. But now, it's going to be on a lot with me right in front of it, full blast! lol
Bro is coming up from LA. He's used to hot and has a high tolerance. Gets chilled more. Told him to bring a sweater cuz I"m not turning down the air! lol
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Nooooo I just started tamoxifen July 1st, I'm 51 and the hot flashes are sending my laundry bill through the roof.
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Hi ladies,
I had posted a couple years ago to this thread, just about to go out of my mind being sleep-deprived for months following dx, surgery and tx, which for me was tamoxifen and ovarian suppression. I was put of Effexor for the HF, and, eventually, also Ambien to help with sleep. I took Ambien daily (for about a month? it's been a while, so I don't remember); once my body/brain got back to a regular sleep pattern, I was able to drop Ambien. From that point, I used only occasionally, to, for the last half year, almost never. Well, until this month, after stopping the OS and dropping Effexor - I have needed Ambien to help me fall asleep (I tried not using one night this week, and felt awful through the night and the next day). I have not found Ambien to be addictive, and haven't had side effects being on or going off it. I had tried melatonin (even knew about the low dose issue), valerian root -- those just didn't work for me.
I was so desperate for sleep, even if I understood the withdrawal side effects I am now experiencing with getting off Effexor, I probably would have still chosen to take it.. But, if anyone is facing that decision, I would encourage them to find other ways to deal with hot flashes, and push for a sleep aid such as Ambien if natural sleep aids do not work. My dr. was more reluctant to rx Ambien than the Effexor. Hindsight being 20/20, I should have worked harder dealing with the hot flashes. Effexor should be a drug of last resort IMO.
In sisterhood, Renee
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I tried Effexor for hot flashes but it didn't help that much and the side effects were not worth it so weaned myself back off it. I have since been taking Gabapentin (300 mg) nightly and another 100mg at lunch time. I had given up the fight on h/fs but started taking the Gab for all over body pain (I assume caused by either delayed onset chemo s/e or Tamoxifen related). I haven't slept this good in years and the hot flashes seem milder and fewer. Even having some nights with 7 hours uniterrupted sleep.
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That's what I'm using too,,, for nerve pain. I'm on 400 mg at bedtime and it seems to help. Still have some HF's, but at least I'm getting some sleep.0 -
Blownaway and glennie. . .I'm on three daily doses of Gabapentin. It does help most of the HFS and was controlling the nerve pain until my exchange. I see MO again next month.
Scottie
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Can you describe your nerve pain? I am experiencing deep pain down my spine, arms and legs much like you get with a high fever. It feels like my bones should be melting. I take Tamoxifen and have been finished with Taxotere, Carboplatin & Herceptin since December. My onco is having me split the T dosage 10 mg morning & 10 mg evening to see if the pain lessens. Any insight?
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i'm not on tamox, so no insight on that,,, but splitting the dose may help. Worth a try.
The nerve pain that I have is a burning sensation. At its worst,, it's like my hand/arm is on fire and I want to dunk it in a bucket of water. It will wake me up, it's that bad.
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I have not tried splitting the dose either but have thought about it. Would have to try over a weekend. My nerve pain feels like a burning knife cutting through me. It shoots across the area and it sometimes has no rhyme or reason. It can take my breath away and keep me from moving for a few seconds or minutes.
I have a high pain tolerance from ovarian cysts. The nerve pain tops it. Exercise and PT do help though.
Scottie
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Scottie: I too have a high pain tolerance due to having Fibro for many years, but the nerve pain is overwhelming, it went way past my tolerance. You can go up to 3600 mg of gabapentin a day,, can't remember if you said how much you take. If you are on that dose now, you might ask your doctor about changing to Lyrica. It is a related med and some do better on it than on gabapentin. I tried it,,, didn't work for me,,, gabapentin worked better. Can't tell until you try it. Be aware that there is no generic and some insurance companies don't want to pay the high price for it either. (like mine)0 -
Blownaway---Sound like your pain is the joint/muscle pain from Tamoxifen. I tell people that my near constant pain is like the day after riding a horse after not having ridden one in years. And I've also said that it's much like the deep pain you get when you have the flu. Mine started about a month after starting Tamoxifen. After 6 months of no relief thru my MO, I consulted a holistic doc. He was the one who suggested turmeric and ginger, both anti-inflammatories, as well as magnesium. I found 90% relief within a couple of weeks. Then back in Feb, about a month after my hysterecomy, the pain got a little worse so I upped my ginger and turmeric and got relief. A few days ago, it got a little worse so this time I added a little bit of magnesium and pain is definitely better today. These are all natural supplements that have been shown to help with things like arthritis and fibromyalgia. Of course, check with your doc before starting anything. Google these supplements and maybe print out some articles and take to your MO. See what he thinks. But your pains sound just like mine which all my docs say are Tamoxifen related.
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