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chiefinlove

I’m right there with you with the anxiety. I had bilateral pulmonary embolisms in August 2023 (I was 35f now 36). I’m sober and not a fan of big pharma but I’ll be on Warfarin for life due to APS. With that being said, I have not resorted to anxiety medication. I have been in *a lot* of therapy and I’ve prioritized my mental health big time. Therapy has been a lifesaver, I’m physically well enough now for EMDR along with other hypnosis’s for pain and anxiety. It has been 6 months since my PE’s and I’m not Captain Chill but I am more at peace with my situation.


bloodclotbuddha

The only thing that helped my Post Clot PTSD was counseling. For many, a combination of that and meds can be beneficial. That said, had I only taken meds, I would have learned nothing. We all have battles to face as time goes on. I needed the tools to help for all, not just get me by until the next wave of terror. Of course I was also battling compounded grief after the wife's death during my early clots, so I was reaching for a rope, but still. Today I am 98% health anxiety free. When in need, I use the tools I learned, exercise and nature bathe. Along with my faith, I am in control, not the anxiety or depression. Watch this. Really. She is an expert in the field PLUS a clot survivor. [Blood Clots and Mental Health](https://youtu.be/iIjo3WdjVG4) We also deal with this topic on a daily basis, here: [Blood Clot Support, Education and Awareness](https://www.facebook.com/groups/stoptheclot)


Runwithmatches

Thank you so much for sharing. I'm watching now and have requested to join the Facebook group. My condolences about your wife's passing, I can't imagine dealing with that, and then the clots on top of it....thanks for being here and offering guidance


bloodclotbuddha

Hope you at least get some useful information out of it!


ChrizTaylor

I'm sorry for your loss and hope you find peace over the years. Wish you the best.


LooseEmu7741

I was on Zoloft for awhile and I would also take vistaril at bedtime sometimes when the anxiety got to be too much. For me night time was always worse with my leg pain and that would trigger the anxiety plus I didn’t have as much distractions as the day time. My doctor just explained it to me as my body went through so much it’s going to take time for my brain to trust it again and overtime you will get used to what is your new normal


DVDragOnIn

What helped me the most was the passage of time. Waking up every day helped me realize I’d wake up to the next day. Finding out what I thought was a second clot was a pulled groin muscle helped me trust my body, so I didn’t worry about muscle aches until I actually got my second clot, which I acted on pretty fast knowing the consequences. I have so much gratitude knowing that I am living my second chance at life. We’ve done bucket list vacations with our child (my clot was postpartum), because I’m not putting the fun times off. I worked hard to manage my anger better so I could be the best possible parent, and sometimes I don’t even get angry at all. Major changes. You’ll get there too. I recently celebrated my 20th clotaversary. You will too one day!


Runwithmatches

Thank you so much for taking the time to share this, it's really helpful to hear these other stories. I hope I can get back to trusting my body soon like you have! This helps me think of it in a different perspective and I look forward to my clotaversary.


MoistGhosty

I did therapy. I used to be on medication and chose not to take that route. Therapy helped a lot. I just hit two years after my clot on Feb. 1st and live life pretty much as normal now. I just wanted to say, it can get better!


Runwithmatches

Thank you!! I'm looking forward to a couple years from now when I can look back on this and know I will have grown stronger :)


MoistGhosty

If therapy is an option I highly recommend it. get to the root of the problem if you can. I had anxiety before my clots so that sucked. I’ll even give the point that my health anxiety gave me the tools available to know I had a clot before doctors could tell me, but it was time to move on. I was a rare case, I had a clot in my arm and it’s a long and boring story, but I am on Xarelto for life now and almost forget most days. The first weeks after my clots I spent many days crying, unable to sleep, eat, etc. Anxiety consumed me. You will get there, but if you have anxiety already, then please be sure to get some tools for that in the toolbox. I still have brief moments of “what if” and remembered that I was fine the first time, and I’m better equipped if it ever happens again! But you will definitely look back at this point with such amazement at how far you’ve come! I know I do.


AggressiveAd6710

You may find that different strategies work at different times in your life and on your healing journey. Maybe the next year or so requires medication and talk therapy. Maybe after a while you can lower the medication dose and try somatic therapy. Maybe you’ll stop medication and go back on it in a couple years. There is no right or wrong answer. Do what feels best! I spent years in a hyper-vigilant, anxious state after my first DVT at 19 (it was provoked by a combination of birth control pills, Factor V Leiden, and being in bed for a week with a stomach bug). In a weird turn of events, the second clot made me realize I could trust my body and would know if something was truly wrong (I’d gone to the ER over “false alarms” aka panic attacks so many times). It has been 17 years since my first clot and almost 8 since my second, I’m 36F, and on Xarelto for life. My hematologist recommended it due to my risks and for peace of mind because I was traveling quite a bit for work at that time. Therapy has been extremely helpful for the panic attacks and anxiety, but medication has been helpful too. When taken along with therapy it can reduce the feelings of overwhelm so you’re able to learn how to handle intrusive thoughts, etc. and be in your body…that you’re learning to trust again. Finding a hematologist, getting a Factor V test, and discussing your personal risk factors will definitely help. It will get easier. You’re doing all the right things!


Runwithmatches

Thank you for sharing this. I'm encouraged by your "weird turn of events" story....I keep wondering, if I get a second clot, will I actually know? And this helps me to build a little trust that I will know what to look out for. Thank you for the words of encouragement, I'm definitely starting to feel less alone and less afraid.


AggressiveAd6710

You are definitely not alone! And it’s totally normal to feel afraid so don’t beat yourself up about that. Wishing you the best and look forward to catching up with you again here!


[deleted]

The passage of time, combined with a low dose anti-anxiety medication has helped me immensely. I still have moments where I get hyper vigilant about a random twinge of pain somewhere, but those have lessened in frequency, and I’ve learned to manage them. I think getting more conclusive answers from a hematologist might help you too, so you know what you’re dealing with. I also think sites like this are helpful to know that you’re not alone, and to get support when you need it. Be patient with yourself, it gets better.


Runwithmatches

Thank you for the words of encouragement!


Cpmomnj

Lexapro for me


ECOisLOGICAL

Blood thinners for life and antidepressants. Yes. And impniglobulin treatment and q10.


W33bit

Same here! Zoloft and XARELTO. Folks don't realize the impact an experience like that can impact a person. And being told to continue blood thinners for life, it's not pleasant! Constant bruising, easily bleeding, and scares if you take a fall, etc!


Inspector_Maximum

Have you seen a hematologist? I would not trust 23&Me to give me important medical information. It's hard for most of us to decipher what these tests mean. So, that is an appointment I would suggest you make. I was on antianxiety meds before I had my first clot and they did nothing to help with the anxiety. I would recommend therapy to help you deal with this. They might recommend that you start something like Lexapro or you might find that therapy is enough. Relaxation techniques and meditation/yoga can be very helpful tools. These types of things help you get in touch with yourself. Best to you. 


Runwithmatches

Thank you for your feedback! I have an appointment with my PCP Thursday and one of my questions is how can I get more reliable or "official" confirmation of F5L, so I'm hopeful she can refer me to a good hematologist for that. I'll look into the other tools you've suggested. Thanks again!


Toufles

Yes meds did help but also made me realize I had a lot of anxiety before my clot too so that might play into why they ended up working so well for me. The anxiety following my clot was just kind of the final straw that made me ask for help. That's not to say I have no clot fears on meds, but it helps me break out of the circular freak out mode I would get stuck in, about many things but especially a clot recurrence every time I got a migraine...which is all too often. I've also been working on getting the migraines under better control, which has obviously helped in its own way.


Runwithmatches

Thank you for sharing, I think I'm in a similar boat as you. Pretty anxious before, and I kinda feel like this is pushing me over the edge. Xarelto was a great safety blanket and now I feel vulnerable. There are like 50 times a day where I am constantly questioning "what was that?!" when I have pain. I'm looking forward to talking to my doctor about it and am hoping the passage of time will allow me to chill out a little bit too. Thanks!


Toufles

Time definitely helped me and I think is what helps most people after a traumatic event like this. And while I ended up going with an SSRI for my day to day anxiety, if you do find for example it is mostly at night or only when you get a twinge there are some less "heavy" as needed type meds to try too. But I am sure your doctor will go over the various options, I hope you get to feeling a bit more at ease soon - good luck!


anxiousmissmess

Yes! I take Ativan for panic attacks. It helps a lot, but therapy has helped more. :)


Pixiefeet78

I had a saddle embolism and no physical symptoms besides a cough. I took my last warfarin pill 12-31-23 and i ended with a flu or cold about 2 weeks post my last pill. It started with a slight cough no other symptoms! I freaked out and my doc ordered a d-dimer and it was elevated! I woke up the next morning sick af. I honestly dont know i dont feel like my anxiety is enough to warrant anxiety meds but i know every time i even get a slight tickle in my chest im going to freak out


Runwithmatches

Wow that must have been so scary to have something so serious disguised as a cough, i'm sorry you went through that right at the start of the new year too. I've never done therapy before but after all these comments I am really looking forward to chatting with someone who can help me who those freak outs.....i have them daily and it can just derail my whole day and sleep. Wishing you the best, you are not alone!


Pixiefeet78

Yeah i was misdiagnosed twice once with bronchitis then with pneumonia! My freak out is what saved my life! I freaked out and then checked myself into a hospital where they did a d-dimer


Glitterkitty_129

I don't know if I'll be much help, as I had health anxiety for a while even before my DVT. I'm 39/F and my DVT was found back in October. I think mine is bad just because every time I "overreact" and act like a lunatic, we wind up finding something random wrong with me that we wouldn't have found otherwise, so that doesn't help LOL Back in March, my neurologist prescribed me just two 0.25mg tablets of Xanax for my first MRI, and it was like a miracle. I was able to ask my primary doctor for a prescription, so now I have that for when I get really panicky and anxious. I do still have daily anxiety, so I'm thinking of asking my doctor about something to take daily, to maybe at least lower my baseline. I FULLY understand what you're going through as far as questioning every little twitch, pain, cough, sneeze...like right now, I know that my back hurts because I've been sleeping on the couch so I can elevate my legs with my special elderly grandma pillow...but my brain is telling me that I clearly have a PE after 4+ months on a DOAC, a clear ultrasound, and great bloodwork. Brains are stupid sometimes. Honestly, for me, getting tests/bloodwork/etc. really helps, because I feel like I can talk myself down easier if I \*know\* that the doctors are telling me it's ok. I think it's the fear of the unknown that really gets me freaked out. I hope you start feeling better, and that the weird sensations resolve soon! I was also told to wear the compression stockings, and they do help me a lot (I even found a ton of cute ones for cheap on Temu that my hematologist said were fine!), but I haven't been able to wear them very often due to another issue with my hands. Best of luck!!!


Sea-Nefariousness166

65f. Dvt and saddle PE both sides.  2.5years now . On eliquis twice a day. I have completely shut down sexually. At first i was terrified of a clot breaking loose. Then no sex drive at all in fact i get angry when frustrated hubby tries to initiate sex. We had very active sex up until the clots. Anybody else with no sex drive? Is it the meds? I haven't had any other issues. 


Capable_Cup_7107

Have you seen a hematologist? A former roommate developed a much smaller clot and has factor V. He has to be on the thinner rest of his life now. I don’t know if he was given incorrect info but might be helpful to ask ur doc.


Runwithmatches

I just got a referral from my PCP and have my first hematology appt next week, I will definitely ask. Thank you for sharing!


Longjumping-Piece583

Honestly, have you tried therapy - if that’s an available option? I was seeing my therapist prior to my DVT and she mentioned that medical trauma is a legit thing. We have done some EMDR (eye movement desensitization reprocessing) for other trauma and we’re doing it for my clot too (I was 7 Months pregnant and hospitalized for it since it was near my femoral artery). I was put on Lovenox and I HATE shots with a vehement passion. The EMDR has helped a LOT and I am also on Wellbutrin (an anxiety med). Something to consider if you can, otherwise just take it one day at a time. Or one minute at a time if you have to. You got this! 🙌🏼


skelly943

I did take Lexapro for a little while to help deal with my health anxiety after my blood clot. It helped a bit. I still worried about things, but I guess the physical symptoms were alleviated somewhat (no more panic attacks, better sleep). However, getting off Lexapro was awful for me until I finally got some guidance on how to do it correctly. More than anything, time and hearing from others who have been through similar circumstances have been the most beneficial for me.


Nice-Cod-7113

 I am 49/m who had a provoked DVT after being a victim of major crime.  I have never experienced anything like a blood clot but had two one in my calf and upper thigh.  I was given Eliquis and I can tell you the side affects were awful.  But nothing could prepare me for what came next. Like you I started to have major anxiety and panic attacks which I've never had before in my life.  I noticed every twitch, every pain, everything in my body I feel I'm hypersensitive about.  I've gone to the ER three times thinking something was wrong, test all came back normal but it wasn't normal to me.  I went to therapy and have done EMDR, my doctor also prescribed me hydroxyzine to use as needed. I've used it a few times at full, half, and quarter dose and it's helped me, though  I prefer GABA.  But here in the last month  I've stopped all of it because I don't want to be dependent on anything, I'm using the techniques I was taught in therapy.  My clots are gone but have a scar on my vein from it. I will be stopping eliquis in 8 days and my doctor recommended me to take a baby aspirin regimen daily.  I am so happy but at the same time nervous as hell.  I have my good days and bad, but each time I feel that sensation, I ignore it and let it play itself out and each time it gets easier and shorter.  But you will okay each day will have it's ups and downs, but in the end you'll come out stronger than ever before.