Hi good people. Does anyone take meds for anxiety/stress? During the past year while attempting to convince my daughter to seek mental health care, my PV has sent blood clots into my lungs and severe gastritis into my belly, both new occurrences. Now she has been missing for a month and we aren’t expecting a positive outcome. We finally had a single clue…her car was seen 8 hrs south from where she vanished…it entered Mexico and returned 4 hrs later into Arizona. I can’t get a handle on my raw nerves. I jump at loud noises and find bright lights and auto traffic nearly unbearable.
Stress Reduction Tips?: Hi good people. Does... - MPN Voice
Stress Reduction Tips?
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BluePeony
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MazcdPartnerMPNVoice
hello BluePeony, I am so very sorry about your daughter being missing, no wonder you are feeling so anxious. I would advise that you speak to your doctor about this, for advice and ways that you can manage your anxiety/stress. I do hope that your daughter is ok and that you will soon hear from her. Best wishes, Maz
How stressful for you …I do hope things get better for you and your daughter I didn’t take medication for anxiety I opted for talking therapy on a one to one basis . It was done on the telephone due to the covid crisis and it was always with the same person and very confidential . I found it helpful and positive .
You sound as if you do need help in some way and your doctor should be able to help you . I do wish you well and hope your PV symptoms are settling down again
Thank you so much, Sweetpea. I hadn’t thought of talking therapy ~ happy to hear it helped. Stress isn’t helping the PV issues, I know. We don’t actually think she would have been able to get herself down to the border. Chances are someone else has her car, the ramifications of which we are sickened to contemplate. Thanks a bunch for your suggestion.
A classic breathing technique for calming is worth trying, though, given why you are stressed, I don't know how helpful it will be.
Sit down feet flat on the floor, partially close, or entirely close your eyes and clear your mind of only the feel of your breath. Breath in through your nose for a count of 6, then hold for for a count of 7, then breath out through your mouth for a count of 8. Do this three times. If you don't have the opportunity to sit, do while standing.
As you breath in be aware of the pressure in your chest and as you breath out be aware of your shoulders dropping and releasing some of the tension in your shoulders, back and neck. If you don't feel the shoulders drop, don't try to force anything, just note if it is happening.
I don't know why, but breathing in via the nose and out via the mouth seems to make a difference.
You can also try to visualize the air coming in from a clean fresh source, say off a lake or from a forest and the air going out as air from a stuffy, closed up house.
This works for me, but I have never had a situation in which I was as stressed as you are now. I hope it helps and more importantly, that your daughter is found quickly.
Having a good cry is also helpful. Tears from emotion help remove stress hormones from the body. So if you've been stoic about all this, stop and let yourself have a good weep session.
health.harvard.edu/blog/is-...
Thanks very much for taking the time to write out your breathing exercises, Nightshadow. I will certainly give it a try. I know I’ve been breathing quite shallowly with the lung clots and stress making it nearly impossible to even take in air at times. Best -
BTW: I’ve been the antithesis of stoic. I cry so much that everyone thinks I have a cold. It does in fact relieve the buildup of negativity that also seems to lodge in my chest. Thx again.
I'm so sorry you are going through such a dreadful time. On balance I think talking therapies and breathing techniques are the way to go, but as a short term emergency coping method, I have found Diazepam to be helpful if your doctor will prescribe it.
I will ask when I see her ~ thank you for the suggestion. I’m afraid that this isn’t going to resolve anytime soon. Maybe something I could take, as you said, in an emergency might be prescribed. I’ve never had such a severe physical reaction to stress ~ maybe being 73 makes it more difficult to cope. Best ~
I am very sorry to hear about your daughter. You will both be in thoughts and prayers.
Anxiety can become completely overwhelming. It can immobilize you and destroy your mental and physical heath. Do be aware that anxiety can stimulate gastric distress and gastric distress can simulate anxiety. This occures via two mechanisms. Neural - via the vagus nerve. Biochemical - via catecholamines, cytokines, and cortisol. (Reference the Gut Brain). It is vital to break the cycle or it will perpetuate itself. this is a lesson I learned the hard way.
There are a number of interventions that can help. If you seek a therapist (a really good idea) then Cognitive Behavior Therapy is one of the better evidence-based practices. Breathing exercises (like nightshadow suggested) are often included as part of mindfulness practices to manage anxiety. I practice Qigong to manage stress and to promote health. It is very effective. The Six Healing sounds is a very good place to start.
smile.amazon.com/Six-Healin...
Regarding medications, there are different anxiolytics available. For short-term use, benzodiazepines can be used. They are vey effective but must be used with caution as they are addictive. SSRIs and similar meds like Buspirone can be used for long-term use when indicated. Some of these medications can affect platelet function, but are generally considered safe and non-addictive. Medications can be worth considering when needed as part of your overall care plan. It is best to to consult with a psychiatrist for these sorts of meds. PCPs will prescribe them, but this is not optimal care. If you decide to opt for medication, be sure to have the hematologist involved/consulted.
Do please let us know how things turn out.
Wow, Hunter ~ you do always share insightful, pertinent information. I hadn’t been aware of the vagus nerve connection. It might explain wildly fluctuating body temps and fast pulse. I will take notes on the meds you mentioned. I try to advocate for myself like you encourage all of us to do, but this thing has brought me to my knees…physically and emotionally. Many thanks for the information as well as your thoughts and prayers. It means a lot. There are so many people who go missing. Here in AZ we’ve been trying to raise awareness of hundreds of missing indigenous women. Now I know how their families feel.
Hoping for the best for your family. It is very sad to see how many go missing and how little there is in the way a resources to find missing adults. Adam Walsh was just in the news talking about the need for a national Missing Adults network like what was created for children.
I learned more about the Gut Brain back in 2013 when I had my own run-in with GI problems and severe anxiety. I was quite a mess until I got it sorted out. I attended an excellent training on this topic by The Institute for Brain Potential. They have a similar training coming soon if you are interested.comcast.bmetrack.com/c/v?e=...
The Institute for Brain Potential has a number of really good trainings. They are one of my go-to training orgs to keep up with my CEUs.
Hope this helps.
The institute sounds amazing. I will definitely look into it. I don’t write here very often, but I love reading about different experiences with MPNs. You have learned many health lessons the hard way. I hope you realize what a blessing your advice and support is. Thank you.
Well my life has been very interesting of late. Lots of health learning opportunities. I recently told several of my docs that I want to be the world's most boring patients. My Integrative Medicine docs said "The ship has already sailed on that goal." Alas, my goal seems elusive. i will try to keep working on it.
I suspect you may be written up in a medical journal or 5! Are your recent issues being managed ok?
On the whole things are going pretty well. The Pegasys is doing a good job controlling the erythrocytosis and thrombocytosis. I have not had any adverse effects at all. It seems my energy levels are improving a bit as well. I have another set of labs next week and will post an update when the results are in.
I still get occasional acephalgic visual migraines with illusory palinopsia as a result of the tumor/brain surgery. The magnesium supplement seems to keep it mostly at bay and the Ubrelvy stops the occasional breakthrough quite well. CGRP inhibitors are amazing meds for migraines. I am glad I was able to advocate to get what I needed. it was a bit of a battle with the insurance company. I go back in December for follow up MRI. So far there has been no sign of recurrence, which is a risk. Hopefully the surgery will prove to have been curative.
The occasional low-grade sinus tachycardia is such a minor issue I really do not need to do anything about it other than monitor. There is a risk it will progress into A-Fib someday, but that is a problem for another day. that is why I have my own ECG and monitor incidents. I really do not worry about it as there is nothing I can do other than take good care of my body.
Turns out the whole chronic kidney disease things was a tempest in a teapot. Just weaker kidneys that need more water. Rx = drink more water. Sadly, beer does not count.
That is most of it. The main problem is that I am still not succeeding at being a boring patient. I would really like to go to a doc and have the doc say "Why do you even bother coming to see a doctor? Nothing is ever going on with you." I will keep working on it.
Take care my friend.
When was your brain surgery? Those headaches must be horrific. I’ll bet the docs enjoy having such a well informed patient. I was just thinking about how I have had to add 5 new meds in 7 months, for a total of 8 meds altogether. I imagine you have me beat. Best ~
The surgery was in June 2019. I had what turned out to be an adult pilocytic astrocytoma in my occipital lobe. The tumor is related to another genetic condition I have, Neurofibromatosis type 1. It appeared on imaging to be possibly a higher grade tumor. Thankfully, it was a true grade 1 tumor with none of the 27 cancer genes present. The tumor was hemorrhagic, which is unusual for this type of tumor. Likely due to the PV/aspirin.
The interaction between having both the JAK2v617f and NF1:c5425C>T mutations is complex. It is not well understood. The NF1 mutation affects the RAS-MAPK pathway, increasing the risk of tumorigenesis and other issues. RAS-MAPK is another of the body's kinase systems that is downstream from JAK-STAT. The two kinase systems interact at multiple levels. Understanding is emerging, but there are not many people with both types of mutations present.
Regarding the migraines, they are acephalgic - painless - called "silent migraines." I just experience visual phenomena. Scintillation, scotoma (obscured vision), diplopia (double vision), and illusory palinopsia (mild hallucinatory images). I have only had one really major episode back in August 2020. That was quite scary. 36 hours of significant loss of vision followed by 24 hours of full hallucinatory palinopsia (full hallucinatory images). I combined commentary health interventions with Western medicine. I did a course of acupuncture to calm down my nervous system. I increased my dose of magnesium as there is a clinical indication for Mg in dealing with palinopsia. Things calmed down, but I still had minor episodes. Therefore, I added Ubrelvy to the mix to shut down the migraine episodes before they could escalate into something worse. This approach has worked. The migraine episodes seem to be decreasing, which may mean my brain is continuing to heal and may ultimately stabilize.
You are right. I do take a fair dinkum pile of meds and complementary health supplements. I am very careful to research everything I take and review everything with my care team, I have a terrific Integrative Medicine doc who helps look holistically at what is going on and helps track potential interactions.
I still want to be a boring patient! Sigh. 😔
Thanks for the explanations. I don’t understand many of the terms, but I imagine with your complex mutations the docs are learning from your reactions and treatment of them. Even if you can’t be boring you can be helpful in understanding these diseases. Taking one (or many, in your case) for the team has to be rough though. Stay well, my friend.
Hi BluePeony, I can’t imagine how you’re copying with this situation. Just writing us & having conversations like those above show you’re handling the stress pretty darn well. My body doesn’t cope well with stress so I’ve taken Klonopin & BUSPIRONE which are very helpful. No one has suggested exercise which I highly recommend. It produces endorphins and helps your central nervous system. I also recommend finding a good therapist that can help support you. Many are doing it virtually. Our son is currently dying of organ failure & needs a transplant. Our therapist recommended we exercise & try even a few minutes of relaxation throughout the day and finding things to focus our attention on so I’m watching happy movies or series. Maybe that could help you. I don’t believe in prayer but I will definitely think positive thoughts that you can find the strength to deal with whatever happens. I’m so glad you sought our ideas. Plz let us know what happens & take very good care of yourself. Katie
Oh my goodness, Katie I am terribly sorry about your son. Has he had a long illness? Your heart must be breaking in a million pieces. I do try to seek positive vibes wherever I can. I like to walk, read and watch upbeat films, etc. I also knit like a crazy woman, which is soothing for the most part. Thank you so much for responding from the depths of your own grief. Take good care.
We don’t really know how long he’s been sick. Because I gave Common Variable Immune Deficiency the vaccine didn’t help me so we decided not to risk returning from Florida to Wisconsin last summer or this. And no one seemed aware because his doctor was incompetent & in June said he was ok. As soon as we found out he was sick we flew to Wisconsin. We still hope he’ll get a transplant in time & some days are easier than others. Usually if we’re distracted. But as bad as our son is, to me what you’re experiencing seems much harder. I agree about the disastrous effect mental health has & don’t understand why our government doesn’t invest more money in research. I don’t if this will help you but our friend has a schizophrenic son who disappeared for a long time & she was afraid he was dead. Eventually he contacted her & he is doing well now. There are support groups for parents like the National Alliance For Mental Illness (also called NAMI) which has local chapters throughout the country. I know many parents have found help with them. At least emotional health, I don’t know if they can help in other ways.) Please remember how much all of us care about you & this horrible situation. Sending you strength and compassion. Katie
Oh, Katie…it has been a very difficult journey for you Is it a singular organ he is in need of? I will keep your son and family in my thoughts. We are both waiting aren’t we? My paternal grandad had schizophrenia. Back then treatment was quite barbaric, but at least there was a way to get treatment. You are so correct about the scarcity of options. We had paperwork for a 72 hr psych evaluation, but most people who are borderline can fake their way through 72 hrs and come out of the experience more disturbed then ever. When last I saw my daughter, a week before she went missing, she was severely disturbed. I’m getting a bit better at pulling myself out of “what if” scenarios before they bring me to my knees. It is very helpful to hear of outcomes such as that which your friend’s son experienced. I never thought I could put my pain out in the daylight here, but I have received such kind and informative responses and they have calmed me down. Thank you for yours! Keep well ~
Hi. Our son definitely needs a liver & may also need a kidney. I should have added that our friend’s schizophrenic son isn’t just doing fine, he’s been stable, working & happily living with his mom for a few years. But I know there were at least 2 occasions in which he disappeared without any notice. So try & reduce your “what if” moments as much as possible & treat yourself with the compassion you show us. Katie
Thanks for both clarifications. We have encouraged everyone we know to become a donor since a neighbor received a life saving transplant. She got two new lungs 8 years ago..CA of the lung lining. We will think positively. All the best to you.
Oh my goodness - you are in a horrendous position. I really am lost for words.I really hope you can get advice from the medical profession or other sources and that it will help you through this awful situation.
I pray your daughter will return safely.
Sending you hugs.
Thanks so much for your well-wishes, Wyebird. I will definitely will seek help. When I first realized she was in bad shape she acquiesced to seeing a shrink, but she bailed at the last moment. I went to the appt instead to seek help for her. I’ll go see her again…for myself this time. Best ~
Hi, Bluepeony, I really feel for you. My brother has mental health issues, is homeless, and living in Texas. He refuses to take medication and has even been taken to the emergency room on a mental health warrant but eventually, he is always let out. He also went missing recently for a month, and we were frantic with worry. I agree, the stress is overwhelming and neverending. I take a small dosage of alprazalam at night, to keep my mind from racing all night. A couple of years ago I went for about three months to therapy because I felt stress not only for me but I was so worried about my mother and my sister who are all trying to help him. I cried the entire hour every time I went. Stress definitely affects our illness and I hope you find a way to relieve some of yours and I pray that you find your daughter soon.
I’m so sorry for the pain you are experiencing with your brother. Mental illness is so baffling, and it impacts the entire family. My daughter is bi-polar, which for years was quite tame. We think a concussion about 2 yrs ago exacerbated her condition. She was full-blown paranoid when last we saw her, a week before she vanished. We had paperwork to have her evaluated involuntary but didn’t get it through in time. We were also worried that when she got sprung after 72 hrs against her will she would come out of it worse than ever. Do you feel that is what happened with your brother? I will hold him and your family in my thoughts. Thanks for the medicine info. Best ~
Thank you for your kind words. My brother got progressively worse over the years because he never admitted he had a problem. He walked out on his wife and young son when she gave him an ultimatum: either take your meds and get help or leave. He chose the latter. The ironic thing is he has a Master’s in psychology and worked in that field for years. The brain is a very complex organ. I’ll never understand it. I hope your daughter contacts you soon.
I’m so sorry for your situation, it sounds incredibly hard. I suffer from anxiety and just discovered a podcast called A Little Peace of Mind, which I am so far very impressed by. I think she is a professional psychotherapist and also has a webpage, her name is Nicola Bird, she is British, Google her as she lots of resources. Truly wishing you the best of luck.
Thanks Magentas ~ I really like to listen to podcasts. It will be wonderful to give a beautifully named program a try. I feel blessed to have found so many kind souls here. Best ~
Me too, they can be a great distraction. Here’s the link 😊 podcasts.apple.com/au/podca...
I am so sorry to hear about your daughter the stress and anxiety must be overwhelming. I have a generalized anxiety disorder which l manage with CBT. As others have said long term it is a good way to go
I have been seeing a therapist for over three years. My anxiety disorder was triggered by the very sudden death of my brother. I was prescribed anxiety meds for six months and they really helped through the worst of it
I was having panic attacks, racing thoughts and sleepless nights.
Best to speak to your doctor and discuss options and determine what works for you.
The meds combined with therapy was my solution and as l felt more in control l reduced the meds
I wish you and your family well
BluePeony• in reply to
Thank you for the well wishes, Dovme. I’m very sorry about the passing of your brother. Dealing with a sudden death is incredibly difficult. It sounds like you found a good solution to managing your anxiety, and I appreciate you sharing it. I realize I need help. My elder daughter told me yesterday, “Mom, you have to get through this, because we all need you too.” Best ~
I havnt post to you before as you have had so many lovely folk getting in touch.Just to say you are in my thoughts xxx
Aw, thanks so very much, Mostew. It means the world to have you all reaching out. We have received a few very perplexing clues since we hired a PI. Nothing makes any sense at all. It is difficult to take a step back, but responses here and other family who need me to be ok have encouraged me to seek assistance. Best ~
Hi BluePeony.
I’m so sorry to hear of your distressing news. The ‘not knowing’ is hard to deal with and plays into that anxiety too.
I advise you to consult with your Doctor to offer you the short term help that you need now. You can always think about long term help if, and when you need it.
You’ve had some excellent advise, particularly from those who have been through or are presently going through difficult family trauma. My heart goes out to all of you.
I hope there is a positive outcome, and glad to know you are encouraged by the responses on the forum.
My thoughts are with you and your family. Xx
Oh Blue, I'm do so sorry to hear about how life is at the moment for you and your family. There's no getting away from the fact thst this is a situation every parent would fear and dread. This isnt an ordinary everyday stress situation, you have a great deal to cope with. As a psychologist, I'd say talking therapy is a must. I would also say, while effective, it can take time to help. A short term intervention might be worth exploring with your GP for the immediate future. You deserve some respite from your current challenges, and that would give you the energy and stability you need to fight this situation xxx
Thanks for the thoughtful reply, Jo. I do feel like my frazzled nerve ends need an immediate fix since I’m not doing much sleeping and have to fool my body into accepting food. That being said, I’m going to make an appt to talk with the shrink I saw last spring when things were getting bad. As you say, it is a fight…I’ll need better coping tools. Thx.
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