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Question re: Sleeping meds for insomnia?

Bailey3266 profile image
10 Replies

Hi:

I just moved from Boston to California and my new primary is a PA who at my 2nd visit in 2 weeks (very taxing, a bit overkill & ? Insurance abuse) - typically I saw my old primary once a year=wellness, flushot etc!

Anyhow original cancer was in 2010–hate opioids so I’ve dealt with post surgical pain without meds for 9 years a s well as new pain which resulted in stage 4 diagnosis in 11/2017—this I think my insomnia got worse once I started with I/F combo due to “all over-muscle/joint etc pain.

So my query is my new PA says “I took an oath to do more good then harm or something & she wants me to see psychiatrist for insomnia-which is medical. Oh I also use CPAP for sleep apnea for 5 years which in and of itself makes sleep difficult.

First she said she won’t prescribe Ambien & Ativan together & I said I didn’t know that & I feel the Ambien works better cuz I truly get solid 8 hours on Ambien.

Lastly I toook Benadryl (which 12.5 mg or half tablet worked for me about 5 xs a month for 12 years. But she made her mind up and didn’t want to hear anything just wanted to keep giving me referrals:

Ie. Cardiology, neurology, psych, sleep study (she won’t even reorder my supplies that I’ve used for 5 years even tho suppliers say that primary can/shud order them & insurance company says primary can do many things like order cardiologic tests without referring patients out (I think it’s all because of liability & not prejudice but her age-prob inexperienced. I don’t know what to do; do they work under a physician who could perhaps do what my old primary doc did.

9 years ago after 6 surgeries in 5 months I thought I needed depression meds and did talk therapy and tried several meds (worst was Remeron) I did 2-4 years of therapy & am

Med-resistant for depression but I do take Zoloft FOR ANXIETY (which I’m tapering off currently as I didn’t know it was an SSRI). Anyhow been there done that and have dealt with stage 4 for 2 years without psychiatrist pushing more pills at me?

Any thoughts.

Also, DOES ANYONE KNOW Fflushot IS AVAILABLE YET?

Thanks and goodnite; 2 AM here; 1st nite going cold turkey from Ambien & Ativan (which I only took if Ambien wasn’t helping—I had both scripts and can take Ativan 3xs a day as needed & useit very sparingly; I dunno what the issue is and how to get around it—prob find another primary doc—she wouldn’t even do my pap smear at my second visit-she tried to refer hat out to Gyn also??

Thanks again!

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Bailey3266
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10 Replies
Barbteeth profile image
Barbteeth

I take a small dose of amitriptyline...10mg at night...have done for years to help back pain ( before mbc diagnosis) and it has the added effect of helping me sleep like a log...8-10 hours usually...that dose is tiny and not the antidepressant dose...I tried antidepressants and omg did I feel ill

Like you I hate taking opioids but have to as the pain is too bad...bloody nightmare

I do have a nice oncologist though...I’m in UK and have private insurance which does make life easier

All the best

Barb xx

Francesca10 profile image
Francesca10

Get another dr. My oncologist put me on Ativan which I take at night. As a long time user of ambien I had to find a psychopharmacologist to get it. My drs would do it for me but at one at night- my tolerance for it has increased so my dose is 3. With all the other issues I have going on, if I can’t sleep, forget it. I developed insomnia post menopause and saw a psychiatrist who put me on lexapro and ambien. She abruptly closed her office, leaving her patients to scramble. I tried other psychiatrists who all said the dose was too high and gave me all these other drugs that were a disaster. Remiron the worst. So I had to search to find someone who listens. Took time but it worked.

Bailey3266 profile image
Bailey3266

Thank you both. Both my primary in Boston and new PA act like I’m Med-seeking. Definitely not; but I think I may have developed need for more than 5 mg Ambien and prob the Ativan needs to be more than 1 mg—I’m mild-moderately obese too—so I think that plays a role. I’ll begin again with searching for another primary & I’ll explain to my oncologist this week to see if he has suggestions or could discuss it with my PA to exempt my seeing yet another doctor due to added stress/taxing effort to get to doctors etc.

Is the issue of doc and PA liability I wonder as I’m certainly not buying that an oath to do more good vs harm—calling BS there?? AGAIN, first thing my Ibrance nurse did was write out comparing and Ativan scripts; as it is expected to be needed to help with sleep nausea and anxiety. Mine is prescribed 3xs/day & I only use Ativan if Ambien not working.

Tried going without either last nite; but only slept very broken sleep; probably 4 hours outta 9 in bed. I like Ambien as it gives me a solid 8 hours which I think is necessary especially for Cancer patients—but for entire body.

I do notice “brain-fog” which idk if that’s Mets related, early Alzheimer’s, or side effects of Ambien/Ativan?

Thx again!

mariootsi profile image
mariootsi

I found it difficult to get medical help also when I moved from Cape Cod to California.

My primary care doc out there woulnt refill my zoloft or even my

Pantroprazole for my gerd!

And I brought perscriptions from my Cape Cod doc who said they can be refilled in CA.

Wasn't happy with my care out there!

Francesca10 profile image
Francesca10

Idk is it a California thing? First, it is truly appalling when medical professionals see mbc patients as drug seekers.that means they have no clue. I really hope you can find someone who listens and understands.

kearnan profile image
kearnan in reply to Francesca10

It happens in NY. My onco would never prescribe xanax or ambien for me. She even told me to go to my primary doctor when I needed an inhaler to put in my mouth and help me breathe during the humid months. My onco's thinking (and I get it) is that she is there to supervise my cancer and will only write meds related to that. In NY most primary doctors will NOT write xanax as it is now labeled as a controlled substance so you need to go to a medical psychiatrist. The pain is that they now they cannot write refills so you have to pay for a copayment and go and get your script. It was a pain for me (since I had been on xanax since way before it became controlled, thus I always got three refills). If I had one wish, it was that I was never on the xanax in the first place. I was told to take it every day and I did. I have been on 3 1mgs. per day. I even tried to find specialists that could get me off it (after going through a withdrawal that I thought I was going to die from.) They said I have been on it too long to try to get off it and it would take 1/2 the time I was on it to get off it. So here I am still on it. Xanax is strong. They say with a heroin withdrawal you feel like you want to die, with a xanax withdrawal, you can die. There was a man arrested for not paying child support and jailed. He was on five mgs. of xanax per day. He was begging the police to get him his meds and they refused and then because your body reacting so violently and quickly when abruptly stopping xanax, they tied him to a chair and they found him dead the next morning. The prison's own doctors said it was due to abrupt xanax withdrawal. There are specific doctors to get specific meds. Never heard of a primary doing a pap smear either. You can't expect one doctor to fulfill all the meds you need. I lucked out after all these years. I found a primary doc (who know my former primary doc) and he agreed to write me the xanax and ambien. I don't even have to go in to see him. I just call his office and ask his staff to have him call it in. If God forbid, he should retire, I would have to go searching all over again.

Red71 profile image
Red71

I take Ambien 5 mg and Ativan 1 mg every night or I can’t sleep. My oncologist and I had a conversation about it and I promised I would never ask for a higher dose and he promised he’d never ask me not to take it unless my husband (a retired doc) thought I was a danger to myself on it. I’ve been taking the combination for 8 years and even decreased the Ambien from 10 to 5 mg on my own because the higher dose didn’t make me sleep any better. I’d find another doctor or ask to have an appointment with the doctor your PA works under.

PJBinMI profile image
PJBinMI

The compounding pharmacy where I have been getting Rx testosterone cream (for vaginal atrophy and dryness from anti-estrogen meds) has recently started carrying CBD products. I trust them alot and spoke with one of their pharmacists last Thursday about which product would work best for me with the myriad of medical issues I have. She recommended the tincture and suggested taking it an hour before bedtime, under the tongue. The first night I used it, I had the best night's sleep I've had in weeks! She recommended using it at the beginning dose for at least two weeks and doubling the dose if I seem to need to. She also told me that it helps reduce inflammation, and I had already learned that cancer is an inflammatory thing, so that sounded good to me, too. Living with this diagnosis and the uncertainty that comes with it is certainly stressful! I am fortunate to have built up alot of inner resources over the years! I was a therapist for 20 years and had therapy myself, as well as leaving that career to go to seminary and become an Episcopal priest. I put myself thru seminary working as a chaplain within a large big city hospital system and saw alot of death and dying and learned alot about the medical system, dealing with it and dealing with end of life issues. So that has given me perspective that has been hugely helpful in dealing with this. My sense of humor helps too! I used to have just two physicians, primary care and gynocologist. Now I have enough of them to field a baseball team! lol Oncologist, surgeon, orthopedic surgeon, neuro-surgeon, dermatologist, cardiologist, pulmonologist, gastroenterologist, endodontist and I may have left out somebody! I "fire" doctors I don't like, trust and respect. I'm in the process of moving my prescriptions to the pharmacy at the local grocery store as I like and trust the pharmacists there. They've gone out of their way to get me what I need, and last week got a new Rx for an antibiotic prepared for me to take the first dose in the morning of when the Rx was written so I would have time to take it the prescribed 3 X a day! I'd been getting most everything 3 months supply at a time from the mail order place my insurance company uses and I had to really push and talk to 2 more people than I think I should have to find out how much more it would cost to get my prescriptions locally, but the grand total came to just $200 a year and I think it is worth that I work with pharmacists and their staff, who know me, say "hi, Pam" when they see me, and go out of their way to take care of me!

My old retired at the end of last year onc would write prescriptions for anything I needed. I did take sleep meds for about 18 months a few years ago. More recently I've just used melatonin or taken two benedryl tablets. (I have alot of hay fever type allergies and have used alot of benedryl in my life, somebody with less history with it might get help sleeping with just one.)

RLN-overcomer profile image
RLN-overcomer

Greetings sister /warrior When on a rare occasion I can't sleep I take two Benadryls, or two Melatonin capsules.

Bailey3266 profile image
Bailey3266

Thank you all. 1/2 or 12.5 mg of Benadryl allows me 6 solid hours sleep; Ambien allows for 8–so I prefer that; but on top of that I cannot fall asleep—I have poor “sleep hygiene” always have; so the 1 mg Ativan under my tongue seems to help get me to sleep if Ambien not working after an hour. I also take Ambien for nauseau and anxiety when flying Calif to Boston it involves a plain change and all told is about 9-11 hours depending on the layover timeshare

So, my insurance provider told me that primary docs are supposed to do PAP smear and dermatological annually at wellness along with myriad of other things. What I hate is when they come in and don’t call me by name and ask how are you and treat my whole person—they are obliged I’m sure to get paid to do documentation checklist and stare into the computer for at least 20 mins and then that leaves no time for my questions/concerns. So even though I’m paying for this visit it is clearly dictated by the insurance company.

Lastly, my ONC said he’d write scripts for me—phew; did not want to go the psych root=been there done that in 2010 after BM w/reconstruction and tried at least 5 antidepressants—I believe I’m Med resistant and just have chronic depression—though after getting stage 4 diagnosis I feel lighter; better perspective on life & meaning & I treasure every day!

He also said he’d write referral for “palliative care” in my home! Has anyone experienced palliative care. I think I need help with cognition, my extreme debilitating side-effects (musculoskeletal) if I/F combo (which is worse on week off Ibrance), maybe anxiety & insomnia & some social anxiety issues I’m having due to loss of cognition. I am also having a brain MRI since it’s been 2 years and I AM having serious cognitive issues!

Hope this is all helpful to others. Again sorry for such long posts.

Ps I’m copying last paragraph & starting new thread on that.

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