Since being diagnosed I have had near panic experiences and great waves of anxiety. Some of the meds are stressful on the body and I found that Ativan 0.5 MG worked for me when needed.
I heard that it is very addictive. I wonder how many of you manage your anxiety?
Thank you so much, I am in limbo right now waiting for new treatment while continuing with the old Alcala 1/2 dose, beta blocker and blood thinner to prevent arrhythmia.
I also get very anxious. I try to do breathing exercises three times a day to calm myself and if you practice you can get to that calm place in stressful situations. It does not help my fear of being hospitalized though, last time I was there I was hysterical, it was awful. The dr was a real piece of work, she refused to give me anything then kept coming by and arguing with me about it! I finally just asked her to please leave me alone. I could not sleep at all on the hospital. Very stressed
Anxiety is not uncommon when one is undergoing changes to how we live with CLL. I deal with it by getting enough sleep, being outside, exercising, and I talk with a therapist I like and trust every other week.
I worked on my sleep by establishing a nighttime routine starting an hour before I go to bed. It’s been very helpful.
Exercise should be started gradually if you are adding it to your routine. Pick something you enjoy doing and start slow. Exercising outside may be helpful with your anxiety.
Another option is to take some time each day to write down what is causing you stress. Follow this by writing down what you feel grateful for.
I just talk to my therapist on the phone. It’s easy and convenient.
I won’t tell you to stop worrying because it takes some time to develop new habits to replace the worrying.
THANK YOU CycleWonder. I think you may be right about having a therapist to talk to. My anxiety is triggered by depleting fatigue and feeling powerless. I applaud your spirit and I wish you all the best.
To be blunt … who care’s if you become dependent on a medication that works very effective. I’ve been on benzodiazepines for over 30 years and I’m not acting like a drugged out abuser. It controls anxiety for me by 80-90 % if I’m not taking it I have zero quality of life. I haven’t had to ramp up my dosage in 30 years and feel great. People are dependent on most medications they take like high blood pressure, Diabetes medication or their Health will be in jeopardy. Take the benzodiazepines because they work !! Don’t listen to the propaganda, Dr’s wanna keep you dependent on them trying a laundry list of SSRI, SNRI, and for the most part they don’t work. Because anxiety is a lack of GABA that’s what benzodiazepines help with. SSRI help with serotonin.
Best luck
But no one has yet looked at, if the cognitive deficits requiring the need for benzos are the root cause of the dementia, or if the drugs are. Prospective studies are needed to eliminate any reverse-causation bias. The meta analysis of 2019 wanted to determine *if there was an association* based on older studies, and the answer is Yes. But there isn't yet data saying it's actually the drugs driving the initiation of the disease. It could also be, early brain changes leading to dementia cause symptoms that were historically treated with benzos.
I do think any addictive drug needs to be used cautiously, and later in the treatment process, when used at all. And there is a marked, easily observable difference in people who take minimal amounts to control symptoms, versus people who continue to get dosed/take meds when obviously impaired.
Hi sorry to hear about your anxiety. Benzo’s are addictive unlike antidepressants, used for many things other than depression including anxiety, which are not.
As a retired psychologist myself I would always advise psychological techniques or therapy first, if you can. Not everyone can this is where medication can help or a combination of the two.
Ann
When I was first diagnosed I was so frightened that I couldn’t sleep and I was having panic attacks in the night. My GP prescribed a very low dose Zopiclone. I took this for 3 nights and got some sleep which really helped to calm me down. Since then I have only taken one on rare occasions when I have been very anxious. I was also prescribed beta-blockers for day time use but I have not taken any. I really prefer to cope without drugs if I possibly can. My best help for anxiety has been Reiki healing and monthly massage. Also, sharing here has been a great source of comfort because everyone is understanding. I’ve read a few books about anxiety and the one that helped me most is called The Expectation Effect by David Robson, it explains how to break patterns that we may habitually slip into. I still get anxious and I’m worrying about my next hospital check weeks in advance. I use the Bach Flower remedies and these are remarkable in their effect. I keep a prepared dose in water by my bed and sip through the night if I wake up. They do work for me.
Hope this helps
I have taken Ativan for years. It is addictive but it helps me deal with people mainly.
You can consider Ativan PRN and engage in therapy. Ask him or her to give you professional advice and consult with your other providers. YOU and your team will make the best choices for you. Best of luck. Please don’t feel bad about having anxiety or needing help for it
Thank you so much. I will do. Bless you 🙏🏼
I agree with Zia. I’ve had a script for Ativan for more than 25 years. Do I take it regularly? No.
I take it as needed, which is maybe 1-2 times a MONTH, if that. There are just times in our lives where stress gets the best of us. I do try deep breathing and such first. Ex. of when I needed it- the death of my father, the death of my husband, CLL diagnosis, work issues, marital problems, stage fright. I theoretically can take 3 per day, but on each instance over these 25 years and traumatic occurrences, I’ve take 1 at the time of intense stress. That’s it.
Addictive? I haven’t experienced that, other than it can be a security blanket for me in that I always know I have it IF I need it.
That is the way it feels for me too. It's just that this is a very stressful and traumatic times for me, so I need one every day, to feel a bit of relief. Thank you and bless you 😊
I was waking up every morning feel tight in the stomach, stessed out and very tense. I was prescribed Escitalopram and it gave me terrible night sweats. I weaned myself off that. Then My mental health support therapist has prescribed Lorazepam .5 mg that I take a half or a whole at night before I go to bed. I have found it helps tremendously with my mornings. Sleep well and don't wake up tense. It works for me. Just a thought.
Thank you 🙏🏼, it helps. How long have you been taking it?
About 3 months. Straight Benedry (dyphenhydromine helped me sleep but did nothing for stress and gave me night sweats also.) The sweats are scary when you have CLL. The SSRI's (like Escitalopram) did not work - read IronJohn's reply above. It explains a lot about whey SSRI's don't work. I take the Lorazepam at night But I also take it with something called Relaxium - it is an all natural, made in the USA sleep aid (advertised by Mike Huckabee on TV sometimes). You can buy it on Amazon cheaper than their website. Contains GABA and Tryptophan and a small amount melatonin (excuse spelling) and other natural stuff. Together they make nights easy and mornings easier. My therapist says at .5 dosage dependence is not very likely. I could wean off it by halves and quarters if I wanted to but don't cause my stress level is way down. I am 3 years on watch and wait, white count has held stead at 20-25, lymphs %73.9 and lymph #16.73, and neutrophils at 21.3. Good luck and wish you well. Keep us posted.
Dear Unair—During a two-month hospitalization ( related to complex causes but during cll treatment), sleeplessness struck me the night before planned procedures. My mind wouldn’t stop thinking. I’d never taken anything but asked the hospital for help. Finally a doctor gave me that baby dose of Ativan. … It worked. I dropped like a leaf in winter. … But I learned it loses its efficacy pretty quickly if you use it regularly ( even once a week). And it made me grumpy—a condition I already bear. I stopped trying ativan and concentrate on getting to sleep on a wing and a prayer aided by healthy eating, regular exercise, a regular schedule, an effort to be productive. … Then once every few months when the clock gets into the wee small hours, I remember the Ativan and it usually ( not always) works. As some sage said, everything or most things in moderation. Or from the songbook of youth, whatever gets you through the night is all right. At least that’s my experience. Bill
Thank you Bill, I enjoyed reading your response and your sense of humor. I agree with all you say... Wil that get me through the day? Be well and bless you 🙏🏼🕊
I treat my anxiety with acupuncture.
I know.
I did too, 3 years ago. Since Covid, I lost the lady who did it. It was wonderful. A question, don't you get bruises? My platelets are low...
I had to take very small doses of alprazolam (Xanax) when I was first diagnosed. (I was also prescribed an antidepressant for a while, Zoloft, and that helped my anxiety a great deal. But I took it for too long and developed gastrointestinal problems.) I currently manage my anxiety through cognitive behavior training (from books and videos on my own), meditation, exercise, trying to get enough sleep, eat healthy foods and laughter yoga. It's a lot of work and has been a project for many years. The laughter seems to be the most helpful. My heart goes out to you. Wishing you well.
How sweet of you to write that. Glad you found a healthy way aroung anguish. It takes a lot of courage. Be well and be blessed.😘
You are right, as we age and lose muscle strength or balance or hormones change, etc etc, a dose may become "too much". I know hospitals I have worked at cut back on sleeping pills people may have been taking at home safely, that being hospitalized with illness/weakness made them a high risk for adverse events like a fall, even during the day and not first thing upon waking.
I took IJ's reply more in the spirit of, "if you end up needing it, don't be too concerned about addiction. " Probably because I have seen many many people suffer, because they were afraid to take a med with a potential for tolerance/addiction. So ideally we use therapy and possibly a short term thing initially. As time progresses, if things can't be handled by things other than drugs, one might be needed. I do think there were quite a few years where people turned to drugs for everything, initially. I like to think the medical profession has gotten a bit smarter and now use diet , exercise, meditation or other therapies as adjuvants to the psychotherapeutic techniques instead of immediately jumping to drugs long term.
I can't state an exact timeline for the changes; I stopped patient related work for a while when consultung and doing medical IT work. After getting diagnosed with CLL, as a patient I noticed major health care systems offering expanded services like massage, dietary advice, patient education (drugs and processes), financial services navigating insurance and other ways for patients to obtain financial help, acupuncture, etc. whereas previously there may have been a single"speaking only" support group. My insurance has a thing we sign up for, complete exercise and other "healthy" goals, and we gain points to exchange for gift cards. So I've personally observed at least some efforts to be proactive about health concerns. Can't say when these were first started, though. And of course it will take time for things to percolate to smaller areas/systems, who may not ever get the resources to implement many of the things the larger systems can.
Everyone is different.. since I was diagnosed I take a benzodiazapan every night because of anxiety. I’m not promoting this medication just that is what has helped me.
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