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My 2 cents
Hi everyone, I figured I’d share my story with you. A bit long-winded, but I’ve found a lot of comfort reading through everyone else’s posts. While everyone has a different story, maybe there’s something in my experience that will make someone else feel like they’re not going through this alone. 14 months year ago I stood up from the couch after watching a football game and felt a strong pressure in my chest. I told my wife and we drove to the ER. A day and a half in the hospital later and they found a 99% blockage in my LAD and put in a stent. I was 42 at the time, exercised 6 days a week, was in good shape, ate healthy, didn’t smoke, had good BP and had no family heart history. The doctors put me on Brilinta, Crestor, Metoprolol and Aspirin. One week after the HA I was still feeling weak, but was overall in decent spirits all things considered. Then one night as I was going to sleep I felt what can only be described as a “woosh” of blood to my head, my heart started racing, my BP went up, I had a stiffness in my jaw and chest discomfort. Off to the ER we went again and after a 2 night stay was discharged after they couldn’t find anything wrong.
The rest of my first year was filled with a slew of symptoms/side effects that made life very difficult. After about 3 months my cardiologist took me off the beta blocker which got rid of the chest pains I was having. A month or two later we switched out Brilenta for Effient which got rid of the nausea I was feeling. At this point I was still dealing with dizzyness & cloudyheadedness...and this is when a new set of symptoms started kicking in. I was still feeling “wooshes” of blood to my head as I was falling asleep at night but had generally been able to fall asleep because of the knowledge that it wasn’t another HA. By about month 6 I stopped being able to fall asleep at night after getting a woosh of blood to my head and the sleepless nights were really starting to take a toll. I was feeling extra stressed during the days which lead to more symptoms. I felt a constant pressure in my head, a sensation like a heat rash on my back and a general feeling that my blood was boiling. On really bad nights this would be a full body experience.
During this phase my GP prescribed ambien or xanax to help get to sleep at night. And while they worked for sleep, I would go for weeks at time feeling “tweaked” or in a constant state of tension during the days. I would be tired but couldn't fall asleep. I went for 6 months without being able to take a nap despite being worn out. All during this time there were many visits to my GP and Cardio as well as a psychologist that I began seeing through my cardiac rehab program. The psychologist didn’t think that what I was experiencing was solely due to anxiety as my symptoms and their durations were atypical. On the other side, the general consensus of my GP & Cardio was that there was nothing wrong with me that they could find and that maybe the symptoms were related to meds or anxiety. Cardio #1 said I had to be on DAPT for the rest of my life. I switched to Cardio #2 who said that I could stick to just aspirin and low dose statin after 1 year. So I fought through the symptoms to the one year mark to see if going off DAPT made a difference….it did not.
At the 13 month mark I went back to my GP who put me on a low dose of an anti-anxiety anti-depressant med that was also prescribed for insomnia so I could quit taking the ambien and xanax for sleeping. I noticed that it made a difference, less “wooshes”, blood boiling etc... After a month on the anti-anxiety med I followed up with a psychiatrist who agreed with everyone that my symptoms didn’t sound like classic anxiety but he upped the dosage to try and see if it had an additional positive effect.
Now 14 months in, I can say that I feel better than I have at any time previously (post-HA). Things are still not easy, I still have foggy headedness, feel a bit unbalanced, am not as quick-witted as I was before and have “wooshes” from time to time as I’m falling asleep but they aren’t accompanied by a racing heart and sleepless nights now. Prior to my HA I would have been described as someone who was able to thrive in stressful situations. I have always been able to “power through” things without needing help. I went a whole year convincing myself that my meds were messing with me and that I just needed to power through to the one year mark to get off them. Well now it looks like there’s definitely a component of anxiety that’s been a part of my problems...and despite what your Medical docs may tell you, no you can’t always just power through anxiety. My advice for folks who are just starting out on this unfortunate journey that we are all on is to advocate for yourself and constantly take small steps to help figure out how you can be healthy and comfortable. I’ve switched docs, pushed to see specialists, swapped meds, changed diets, modified daily routines & adopted relaxation techniques in the past year to try and get to where I want to be. I’m humbled to see folks on here still posting after 3, 4, 5 years post-HA and it lets me know that it’s going to take me awhile to get there.
nemanas, December 13, 2020 7:32am EST
I agree with above opinions. I already posted my HA and open heart triple bypass surgery done 8 months back. Feeling healthy with dozen medications per day but I don't feel same energetic as I was before HA. My advice is to be more careful with diet controls like sugar salt and continue at least tread mill preferably with little weights to keep up blood flow constantly healthy enough to avoid another HA. Do not ignore any symptoms that body alerts. I was really fortunate 1st to get admitted on time and got cured as we may fail if not attended by emergency treatment quickly enough within 15mts. Sharing this here and also helping by watching others nearby friends, kit and kin is very important. Thanks to heart.org
Mb120918, December 13, 2020 7:54am EST
Glad to see that you have progressed to a comfortable place after such a long journey. I read a lot of similarities in your story that match the rollercoaster ride from hell that we all go on and I guess all get off of eventually. I too have had a similar experience with the sloshing heat. It starts with tingling in the sides of my head, like a neurological burning or sparking. It happens when I get annoyed. If I continue the heat comes up like a woman from my spine, then I get very angry and also get a headache. I also have tinnitus which at this time gets so much worse, genes the anger part. But, like you I had a long cord where stress and patience was concerned. Not after the HA. I also eliminated most if the meds and talk to a therapist about the anxiety and ptsd(?). It has helped. Maybe I should be on meds too? I am glad that you posted your experience. Although my cardiologist (#2) recognized the anxiety, they really don't know what to do for it. It is part of the cardiac experience and should be addressed. Maybe as part of rehab etc...this week was my 2 year anniversary, doing much better but still working through the ride. If you are willing to share, I would like to know which medication or class of meds you are getting the good results with. Also, am trying cbd gummies but I don't think they are strong enough.
Thanks for sharing and wish you continued good health and happiness
If6Was9, December 13, 2020 1:57pm EST
Yes, anxiety is a big challenge for HA patients as I've been reading through various support groups. Disclaimer: this is not medical advice, this has been my experience, everyone is different and consult your GP before making any decisions. During my cardiac rehab they flagged me due to the symptoms I desribed and offered session with their psychologist (who I continued seeing after the rehab ended). I'd never had anxiety issues prior to the HA, but decided to go along with the reccomendation to see the psychologist. The sessions help for me as well, we focus on practicing mindfullness exercieses which can help to balance your mood. The challenge that I've had is that while meditation etc... has been helpful, in some cases its like trying to put out a bonfire with a squirt gun. Some days taking a walk or mediating would be enough, but other days it wouldn't. Like you, my cardiologists have acknowledged anxiety, but the challenge is, they are specialists in a specific field and will not always be able to give you solutions in areas outside of their expertise. Prior to my HA, I looked around for a while and found a GP who was willing to act as the "quarterback" for my health and help me coordinate between various specialists. While cardio #1 was very good, I switched to #2 because my GP had a close working relationship with them. After my first episode a week after the HA, my GP put me on Lexapro which is an SSRI. At the time I took it for about a month and a half and it didn't seem to make a big difference. I felt like I was more cloudy headed on it and it didn't alleviate the other symptoms so I stopped. Once the insomnia set it, I was prescribed ambiem (which won't do anything for anxiety) and Xanax as needed. Because Xanax is a Benzo which has addictive properties, we used this as a temporary solution till I got to my one year mark to see if discontinuing the other meds helped. While the Xanax helped knock me out at night, it didn't really alleviate my symptoms and I frankly did not want to use it very often out of a concern about dependance. After the one year mark my GP put me on Remeron which is a anti-depressant that is also used to treat anxiety as well as prescribed off-label for insomnia. The thinking by my GP was that we could try and use Remeron to go after the two issues I was facing, insomnia and anxiety and stop using a benzo. Of note, Remeron is not generally the first choice med for anxiety, but since it's working for me, we're sticking with it for now. Also, weight gain can be an issue with it (not good for a cardio patient), and I've gone up a few pounds but am still in a good weight range for my height so will keep an eye on it. Like the cardiologist, my GP has limits. They won't necessarily go in depth and try different meds and dosages to dial in what the correct solution is... that's what I was referred to go see the psychaitrist for. I use my GP, who is probably sick of talking to me by now :) , to connect the dots between all of the specialists that I see. If you don't have a GP willing to do this, then it may be time to find a new one. My biggest concern about going on anti-anxiety meds was that I didn't want to be walking around like a zombie during the day. I've always tried to stay off meds unless absolutly necessary. After a year of giving it the old college try to will myself through, I decided it was time to give full time anti-axiety meds a try. While I did feel groggy for the first couple of weeks, I now notice less of an immediate effect when I take the meds and feel a bit more like my old self.
Mary, congrats on your two year anniversary! Glad to hear that year 2 has been better than year 1 for you and best of luck on year three!!!
Mb120918, December 14, 2020 10:20am EST
Thanks for taking the time to explain all of this. It sounds like you hit on a very good rehab program. Although I was well taken care of physically they did not include the phycological aspect of it. For me it has been the hardest part. Also, the fact that you have a GP that is willing and able to be a mediator is exceptional. I don't think that is feasible for my location (NY). I have been my own mediator but it is rough. I too have a script for xanax and have only used 2. Don't want an addiction problem either. Plus, my experience with the xanax is like a sureal fog. When I was diagnosed with epstein barr virus in the 90's they put me on elavil which was a disaster. Then I was crazy and still anxious. Zoloft was better, maybe I will revisit that. I don't do well with any meds. Although I find the cbd gummies not strong enough, they did calm me down to a point. I will double up and see what happens. Covid has made things worse for all of us, hopefully next year will be better.
Good luck and good health to you too.
vancet, December 18, 2020 3:41am EST
Congrats Mary on reaching 2 years. Each milestone should be celebrated.
And thank you If6Was9 for sharing your experience. I'm glad you found your stable state. I'm on month 17 now and still taking low dose Lipitor, Aspirin and Effient. cardiologists want me on Effient for another year which I think my body has gotten used to now.
I found with me is that sleep is super important for my health. Never cared about it before but post-HA a minimum of 6.5 hours guarantees that I feel decent the next morning and also guarantees a normal BP. I don't know about you folks but there are still random consecutive days where I wake up and feel like an exhausted zombie, unable to do much. I try to push past the exhaustion through sheer willpower but sometimes that body just enforces the timeout. The exhaustion is not as frequent as before but what is most annoying is that it still happens. I never had this pre-HA.
Mb120918, December 18, 2020 7:46am EST
Thanks vancet, it's both exciting and scary to be at the 2 year mark. I was also taking the effient. Last year at the one year mark I got a really bad nose bleed that took 2 hrs. To stop. That's when they took me off of the effient. Up until that point I suffered from the exhaustion that you are talking about. I don't get that anymore since stopping the effient, but now I am afraid that the asprin isn't enough. So, there is always something to worry about. I also agree with the sleep. We need more now, and you must rest when your body asks you too.
Good health into the New Year!