hi so sorry your so down I was diagnosed 1 year ago with ET. And recently had my meds up to more doses. I feel depressed sometimes I’m on tablets for many years but I tell myself I would rather be on oral drugs than keep going to hospital like the other poor souls take each day as it comes and try look forward to something each day even if only a little thing McMillan are good listeners. And this forum is great sending you lots of hugsx
I was really struggling with anxiety last year. I did an online ‘course’ with Ieso, it’s free and is backed with the NHS, it’s Cognitive Behaviour Therapy. I found it helped a lot. I now know what are ‘sensible’ things to worry about and what are really not worth getting into a state about. I think fatigue and anxiety make you really drained physically and emotionally. It might be worth you enquiring about having therapy.
Hi. Wow, being diagnosed with a brain tumor & ET in one year is a lot!
When you’re anxious & depressed, making decisions can be difficult. Et doesn’t cause depression. But you may be so worried about your health & fearful about your future that you’ve become anxious & depressed. Cognitive Behavioral Therapy (CBT) is very effective but it might be easier for you to do it with a therapist trained & certified in CBT. Many of us on here have found that medication for depression &/or anxiety makes a huge difference. Taking medication doesn’t mean you’re weak. It means you’ve realized (with the input of a professional) that your brain doesn’t function as well without it. I take medication for both depression & anxiety and it lets me live life being happy. Counseling can also work for some patients but CBT is usually the most effective therapy. I strongly encourage you to talk to your doctors about this. Please know we’re all here for you & keep us informed how you’re doing. Katie
I note you are reluctant to start antidepressants. Can I ask you to reconsider? We have a lot to cope with in the physical problems and having a happier disposition helps. I was OK mentally with et and mf but definitely made use of antidepressants during my stem cell transplant. I should have started them earlier, with hind sight. I am now through that and have stopped them.
hello Smudger, I am so sorry to hear that you are struggling mentally and physically, you have definitely had a lot to cope with so it is understandable that you are feeling like this. I would urge you to speak to your GP about how you are feeling as he/she will be able to help you, not necessarily with anti-depressants if you really don't want to take them, but maybe some counselling or other therapies that will help your low mood. You should also discuss this with your haematologist and haematology nurse specialist, particularly about the fatigue, as again, they may be able to help you with this. I do hope you start to feel better soon. Best wishes, Maz
I sympathise with you Smudger. I was diagnosed with ET 18 months ago. It was a blow as I have always enjoyed perfect health. Prescribed aspirin and Peg interferon . Used to feel very fatigued and took an afternoon nap. However, this has abated. I forced myself not to dwell on my condition and now I seldom do.. I love film going and view most things at the cinema with a glass of wine atmy elbow. I have a dog and walking him in the park is a complete distraction. I have also taken up painting and this is very absorbing although my output is rubbish and would shame a 2 year old! It’s very satisfying signing my name in the corner of the completed or half abandoned project. Haha! I’ve found that doing things one has never done before is quite fun and if I don’t like it , I give it up without feeling guilty! Also, I sing along to the music on the radio, whether it’s pop or the like or opera. And if I feel like being miserable and sorry for myself I allow myself 24 hours of wallowing in it without feeling guilty!None of this may suit you or lessen your feelings of depression but I just thought I’d add my half penny worth.
Thank you,I think I struggle more with low mood, anxiety and fatigue then being depressed.
I do get up and get on with things, just sometimes struggle to do it.
Then the worry to secure something and book it, like my holiday in 4 weeks. Still not booked, as cannot decide where to go. Also need an apartment with separate rooms, as my daughter needs her space. As does my son.
Thanks, I unfortunately just don't have time for myself to paint. To much running around and looking after family and home still.
Not sure if this is relevant for you, but my mental state was negatively affected for over a year by 1000mg/day of Hydroxyurea. Halving the dose immediately improved my mental health, with little effect on my blood counts.
Hi. Sounds like you have had a lot to come to terms with, so not surprising you feel as you do. I was diagnosed with ET the end of last year and have struggled with depression and anxiety for 20 years. For me the hardest part has been dealing with the fatigue which isn't going away. I wouldn't rule out taking anti depressants as some of them are very good for helping with anxiety.
But you are not alone there are a lot of us trying to find a treatment that will work and coming to terms with having the disease. I have found it isolating because there are so few people who have this and most people i know have never heard of it. This site has been great, so many people with such a lot of knowledge. You are not alone!
You have had a really tough time medically and I'm not surprised your mental health is suffering.
I was on antidepressants about 25 years ago. They took the edge off the suffering and I gradually got better. This was before I had an MPN. Two of my relatives are now taking the same drug (Sertraline) and are finding it really helpful. It's not addictive and can be effective for both anxiety and depression.
I'm not advising you either way but just saying that antidepressants are nothing to fear.
I think all of us on here know how you feel. I feel like I am in a constant state of worry. I think the worst before anything ever happens. Every little thing I think is something. I got diagnosed with PV and MS in the last 3 years. It has been hard. Prayer has really helped me. And I have an amazing support system. I have to remind myself what I am doing this for, my beautiful 4 year old daughter and my family. It is so hard and I still break down and cry. But I work which keeps my mind occupied and I do yoga and bike. Have cried several times while working out! Funny how that happens for me but it helps. If you are not sleeping I would talk to your doctor that is one thing I do take is something to help me sleep. I will add you to my prayers. The serenity prayer really says it the best. I try to say it in bad times. And I have learned to live in the moment. Taken more vacations in the last 2 years than the last 10. And I spend it with people I love. I cut out all negative people and focus on trying to be here for my family. Hope this helps.
Very sorry to hear what you've been through. For me, now 76, my body "learned" anxiety 5 years ago. I had a heart condition at the time, since resolved with open heart surgery, that sent me to the ER 3 times in a year. After that, every time my heart hiccupped my anxiety would take off. Ultimately my gp prescribed .25 mg xanax and I found it did the trick whenever my anxiety took off. I'm not a pill person so I've gradually weaned off and use breathing exercises to calm me down now. I definitely needed the pill and even though it's the minimal dosage it worked on my 170 pound body. The other thing I do religiously is walk every day starting first thing in the morning and throughout the day. But my soul saver is a bike ride - generally about an hour. Trust me, give yourself a break, start slow, reorient your activities to suit you and give it time. You can break this cycle. Stay in touch with the forum. Wishing you the very best.
I have been diagnosed with ET also. When I was 16, I was diagnosed with depression and anxiety. I would go on mediation for a few years the off for a few years. This was not the right thing to do. It wasn’t until age 26 that I crashed and burned. It became years of therapy and meds. However, it was worth it as I look back. I am 71 now and am taking two tabs of Wellbutrin XR (bupropion) and .75mg of clonazepam twice a day. I have not had a minute of depression for 18 years. It is like I am living a new life!
I cannot tell you if the mental issues correlate with ET. You should not have suffer and live your life as you are. Like you, I wanted no part of more medication. Finally my symptoms backed me into a corner and all I could think about was suicide. I was hospitalized for three months and received the help I needed.
I am truly happy and so thankful that there is help out there. Do not be ashamed to ask for it. You have had a lot put on your plate at such a young age. Fight for yourself and who care what others may think.
Please keep me updated on how you are doing. My sincerest wishes that you feeling better soon!
How long have you been on the 0.75 (1.5/day) clonazepam (klonopin)? That say benzos are for short term but I know many take it for years. If it's kept to lower doses it does seem sustainable.
My MPN doc Rx it for me. I'm taking 0.125 to 0.25/night. I may learn more with upcoming psych appt.
If it's ok to ask: Were there some particularly helpful things you gained from the hospitalization?
I did start out on the same dose you are taking then I progressed 2 mg/day. I weaned myself off to 1.5. I have been off Xanax as I had to take 1 mg every 4 hours and 2 mg at bedtime as well as Buspar. Klonopin, in my opinion, is a better option for treatment for anxiety. I have been on it for 15 years with no problems. I don’t mind if I have to take it forever. It does it’s intended job.
As for as the hospitalization, I found a safe place to fall. Apparently, my family made me into what they wanted and I was never able to express an opinion. After I married a very dominant man, I continued my no opinion life . I lost myself. The hospital slowly and carefully showed me that „I Matter“. It was very frightening for me to change. I learned how to make decisions and not dwell on them, to speak up for myself, and do things I wanted to do. It was like being a bird escaping the cage. The many counselors, other patients, and the doctor were so very helpful. I also found the different classes focused on many things were helpful. We did a „Ropes course“, took walks daily, worked on an art project and if you did not want to do something it was ok.
I cannot say enough positive things about my stay.
I hope this helps with your decisions in the future My friend
I agree on the Xanax. It's a quick jolt of relaxation but Klonopin is longer acting and less harsh. My Dr recommended it for that reason. Is the Buspar helpful?
That's so good that the treatments helped. My anxiety is not from anything external, it can actually awaken me from a pleasant sleep. I'm curious what the Psych Dr will say.
Just a year ago all this was foreign to me, some malaise on Bes but life was ok.
I did not find the Buspar helpful. I don’t need to use it though. The Klonopin alone works best for me. Ask your doctor why he prescribed both together?
It's actually different Drs, but they know of all. It's also in the common system records.
Buspar takes a while to work, if it does at all. Seems 1-4 weeks. It can actually make things worse before then. So idea is to taper the Klonopin if/as Buspar starts working. Could be one reason the small Klonopin dose still works, but I don't know. Buspar is a milder med, esp for long term, but milder could be why it may be less effective. I agree benzos really do the trick, and many, such as you, don't build troublesome tolerance. From reading reviews on Drugs.com it seems the higher the dose the more tolerance trouble happens, some are on multi mgs.
Another long term option is SSRIs, but Buspar is supposed to be milder than that.
I'm with you on the anxiety. Started suddenly. My MPN is not a problem, medically nor physically. But my Sjogren's (IFN + Vax caused) messes with the neuro system. The anxiety is a chemical like action, no triggering thoughts required, and it hits only when trying to fall asleep.
I understand the comfort zone. I get worried for any errand out of the house and even stressed about having done so. But there are good days.
Those of us with double troubles are in a bind. I do go for meds as otherwise I'd be up all nights. I hope some day to stop them.
I've been taking low dose Doxepin almost since the vaccine trouble. It's a non-addictive stay asleep med. But it's not enough for the brain-on-fire night time anxiety.
I'm starting Buspar, a relatively mild anti anxiety, so far it's helping some. But a benzo (low dose klonopin is still required)
I'm so with you on "The happy man, isn't as happy as use to be"
I am taking buspar right now 30 mg a day. I haven’t been taking it long though only like a week and a half and so far it’s causing me brian zaps in the beginning & now bad insomnia. I’m trying to ride it out cause I know it can take a while to work if it does.
I congratulate you for sharing your feelings on the forum. So often, we’re told that men find it hard to talk. This is a safe space, and we’re all here to support you the best way we can.
I honestly think you’ve had an enormous health burden to shoulder that was sudden and in quick succession. I feel the anxiety that you’re experiencing is in relation to that rather than caused by the ET.
I empathise, I suffered from anxiety (no depression) around 20 years ago, long before my ET diagnosis. Counselling wasn’t for me. I opted for a course of low dose citalopram with the idea that it would be short term only. This was the right decision for me. It took awhile for it to to kick in, but when it did, it slowly stopped the ruminating thoughts and decreased that awful feeling of surging adrenaline. I was eventually able to gather my thoughts and see things clearer, a fog lifted. I think I was on it for a little over six months.
I hope you’re able to take something positive from the response to your post, and I wish you the best of luck with any decision you make.
I would say if the meds are going to help you, definitely give them a try. Having benzo’s to take as needed can be great, but it varies if you want to take them long term. Before my diagnosis, I would of laughed if someone told me I’d be on anxiety meds myself. Best of luck to you!
Sorry to hear of your diagnosis. 100% that your anxiety and ET are related. Once you understand this crazy disease and how very different it is for each person the better you will be. This is a very long battle, no quick solutions but a journey of find out what works best for you.
Please seek out the guidance of an MPN specialist if you can. Seek out therapy, if needed. Keep you mind and body active and moving. Listen and follow positive podcasts and authors. Eat good quality food and loose the crap and excuses. You are a force to be reckoned with. Set out your goals and future plans and start walking towards them, run after them on days when you can. Good luck, we are here to hold your hand when needed and cheer you as you find solutions. ❤️❤️❤️👊🏼
That is a lot to go through in a short period of time. I have been there and done that as have many of us. From 2018 to 2020, I had four surgeries, including heart (catheter ablation for atrial tachycardia) and brain (resection of tumor) surgeries. I also found out that my ET had progressed to PV. It was a rather stressful time.
The last time I went through a spike in medical issues in 2013, I did not handle it well. I was very stressed out and overwhelmed. I decided that I would never again let this happen to me. I developed a list of coping strategies to use when things were piling up.
1. Support from my family, friends, and faith community.
2. This forum (my friends and MPN Family)
3. Maintain your sense of humor and find ways to have fun no matter what.
4. Surround yourself with things that are positive and lift you up.
5. Mindfulness practices - I practice Qigong.
6. Say the Serenity Prayer every day and take it to heart!
7. Educate yourself about your condition(s). Knowledge is power.
8. Create a high-quality treatment team who you trust.
9. Advocate for yourself. Assertive patients receive higher quality care. Passive patients do not. Remember that you are in charge of your care. It is your goals, priorities and preferences that must drive your treatment. Empower yourself to deal with the MPN and other issues.
I have been blessed to have a relatively indolent form of a MPN. I have lead a long rich life and plan to continue to do so despite what happens with the MPN. Sure - there have been some challenges with the ET-PV and the other related and unrelated medical issues I face. Sometimes you do, as the military folks say, have to "Embrace the Suck" or just "Suck It Up Buttercup." However - it is not all "Suck." There is plenty of good in life to enjoy and embrace. As the prayer says, I seek the serenity to accept what I cannot change, courage to change what I can, and wisdom to know the difference.
There are ever-more treatment options and very real hope for MPN treatment improving in the foreseeable future. Have confidence that you will be one of many who do manage the MPN successfully.
There are excellent resources for dealing with the brain tumor as well. Treatment option have improved greatly. My brain surgery was successful. The tumor was a Grade 1 Pilocytic Astrocytoma. I am now four years out from the surgery and there is no sign of recurrence. I wish you a similar success in treating the tumor.
More than anything else at this point, know that you can manage this. Wishing you success moving forward.
Wow, what a rough year. Sometimes brains do not have the right chemical balance and depression results. And other times depression is a normal response to circumstances. I had taken medication for depression for a year or two and it got me back into a good space and I was able to go off of them. But as someone above said, you can learn to set aside what you can't affect and take action on what you can. As the good prayer says:
Lord give me patience to accept what I cannot change, the strength to change what I can and the wisdom to know the difference.
Meditation can help, writing down how you are feeling can help. I have many pages in journals that are nothing but scribbles put down so hard that the pages tore and it did help. Telling a tree about your depression helps, well it does for me.
Also if you are not a gardener and have the space to do it, getting your hands into dirt helps, hand weeding helps. psychologytoday.com/us/blog...
Thank you all, its just trying not to let anxiety rule my life.Generalised Anxiety Disorder is real, and so is the intrusive thoughts that come with it.
Its been a tough year, yes very slowly getting better.
But its still there anxiety, trying to stop me from getting on with life.
How a grown person can change from being strong to being worried, and low is frightening.
I feel you bro. I have been trying to not let anxiety rule my life either & it can be damn near impossible. Try & focus on things that give you joy like being around family, movies, music, friends, etc
I doubled my antidepressant a couple of weeks ago. Beginning to kick in so I am feeling better but yep.. depression was/is hard to handle sometimes. It just waves over me without warning. Hang in there. ❤️
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