Depression and Pulmonary Hypertension

[Beverly Repouille]

Depression, anxiety, panic attacks – you name it! I’m on Effexor which helps for the depression and anxiety pretty well. If the anxiety spikes or I feel a panic attack coming on, I’ve learned to immediately back off from whatever is causing the problem. It usually works. Then, after awhile, I try slowly bringing whatever caused it back into my life and see if it will be OK or not.

[Kathleen Sheffer]

Beverly, I’m glad you have found a medication that helps you control it. What sort of things do you find provoke your anxiety? I always struggle to pinpoint what is causing mine so it’s hard to back off from anything. Usually the most stressful things are tasks I absolutely have to do, like schoolwork when I was in college, or emails I have to send.

[Chris LaRose Mev]

i’ve struggled with major depression for decades, getting IPAH in 2011 hasn’t helped. i have been on many anti-depressants (currently Cymbalta & Wellbutrin). Being isolated and alone with this nasty illness, “even the smallest thing leaves me with an overwhelming sense of” defeat.

[Brittany Foster]

Hi Chris,
I know the feeling. Personally, I find that therapy once a week has helped me more than the medication does. I’m sure for some people it is best to have a combination of medication and therapy. It helps to just be able to talk about it and have someone listen. There’s so much to manage with this illness during each day and it can feel very overwhelming and isolating! It’s hard on the difficult days physically to find strength to have hope. It takes a lot of work to remain positive in the face of so much.

[Chris LaRose Mev]

Therapists make me feel worse with their clinical approach and predictable questions; ie, “how does that make you feel?”

[Brittany Foster]

I get that! Sometimes I feel like it reaches a point where they don’t know what to say or how to respond. I LOOOVE mine, don’t get me wrong, but sometimes I wish she would just let me cry it out and be mad without having to ask “what are you thinking?” Like “I don’t know what I’m thinking I’m literally having an emotional breakdown” lol!

[Martina]

I go to psychiatrist once a month for like 8 years. I am on my 2nd psychiatrist.

I tried EVERY antidepressant existing. Name any antidepressant, I already tried it. Zoloft (the worst), Deprex (Prozac), Wellbutrin, Cymbalta, Rivotril, Lyrica etc. Everything. Literally. I had allergic reaction to Lamictal.

No antidepressant helped. None. Ever. One caused me horrible apathy.

My doctor has no other option to try on me. I tried even completely new pills, which just got out of research. No results.

I am currently back on Rivotril, two pills in the morning and I take two pills of Quetiapine to sleep and 10 ml of Novo Passit for sleeping. But I am still in shock and deep depression since being diagnosed in April. I have low level of frustration tolerance. I know it. But I can´t do anything about it. I am unstable because of years and years of bullying. I cry a lot. I feel like I was sentenced to death.

I tried two psychologists, disappointing and before being hospitalized in April in hospital I visited new psychologist twice. Currently I am not able to walk there, so since diagnosis I wasn´t there.

I cry a lot at evening, my brain is still going through everything PAH took from me and it is really everything.

I was kicked out from czech FB group of PH patients, because I wasn´t unrealistically positive like them. I always preferred reality, so no brainwashing for me, no thanks. Therefore I have no support from czech patients. They also didn´t like, that I admitted, that I have depression and only told me to change psychiatrist, like depression is something easy cured. They ignored my physical state, that I can walk only few meters and told me, that it´s only matter of positive thinking, that if I only tried I would be able to do physically more, If only I wanted. So their solution for everything is positive thinking. Do you feel physically horrible? Your fault, you´re not positive. Can´t breathe? Your fault. Heart pain? Your fault. Think positive! Jaw pain? Your fault. Problems with travelling? Your fault. Can´t carry more than 5 kilograms and don´t have anyone to help you to travel? Your fault. Flushes? Your fault. I felt like I found some religious group and not support group for patients. They ignored my factical physical state, they ignored that I am new patient, they humiliated me and attacked me for not being positive.

PAH took everything. I can´t swim, I can´t lie in bathtube, I can´t read, I can´t learn (because of problems with concentration and memory), I can´t eat what I liked and what has taste (because of danger of salt), I can´t lift weight (I used to go to fitness to get strength), I can´t sleep freely, because of being constantly tied to infusion pump like dog on leash and because of being able to sleep only on the right side, I can´t walk fast like I used to, I barely walk slowly, I have nothing left. I have to prepare my dosage of Veletri on time, I suffer jaw pain through whole day, flushes of hot, hot face, red face…
And I have need to sleep all day because of chronic exhaustion.

[Brittany Foster]

Hi Martina,
I am so sorry that you are struggling so much. I go through terrible bouts of feeling so depressed and hopeless myself. It is one of the worst feelings to feel so out of control of many aspects. On these days when it gets really hard I try my hardest to reach out for some support. Even if it’s someone who can say “I understand that this is so hard for you” that means a world of difference to me. I also try my best to do things to distract my mind when I am feeling very overwhelmed and try to make a list of things that I can enjoy doing that PH hasn’t yet taken from me. Something like doing crafts, watching a movie, going to the movies if I have the energy, calling a friend to talk on the phone, venting out my frustrations in writing or through a text message to someone I trust etc. These are all coping skills that I have found work best for me. When it gets to the point where it’s really bad, I try to revert back to these and the list that I have made to get me through it and clear my mind.

It is terrible when others dismiss mental illness and think that it can be cured by thinking positive. positive thinking surely helps in some aspects, but it will not cure your physical symptoms. Accepting the symptoms for what they are without getting angry and upset about the way you are feeling physically is so hard.

I would highly recommend asking your doctors if they can recommend a therapist that has experience with patients with life threatening conditions. Even asking a doctor who has experience working with people with cancer and other life changing diagnoses might be good to ask for suggestions for a therapist. This type of therapist is out there and it takes a special person to be able to talk about it without making us feel as if we are “crazy”.

[Adorlee Voisine]

Depression and anxiety disorders are not exactly the same. However, depression can lead to anxiety. Since depression lowers the patient’s energy levels and affects their everyday life in every possible aspect, depressed people tend to feel overwhelmed and threatened by their day-to-day tasks and personal relationships. If one experiences some of the symptoms, the best you can do is go to a doctor and let a professional determine whether your problem is, indeed a medical depression. Asking for help is the first step out of this undesired situation.

[Brittany Foster]

So true. Getting help is so important! I have an amazing therapist and don’t know what I would do without her. Sometimes it’s good to have that person who can listen to what you have to say without judgement and from a different perspective.

[Jim Sparrow]

I’m not sure how any of us do it. I’ve lived with 3 other chronic diseases for most of my life. but never was I diagnosed with a condition that is dramatically life-shortening. My type 1 diabetes, the demyelinating motor neuropathy, and the systemic lupus were and are all reasonably controlled, but this breath gasping PH is a whole other thing.

I’ve tried my best to have a more positive outlook but honestly, as Christmas approaches, I see little benefit in continuing to believe any meaningful treatment is coming.

I’m sorry for being so negative

[Brittany Foster]

Hi Jim,
I just wanted to reach out to you. I know personally what it’s like to have days where it’s hard to see that “light at the end” or to see any positive at all. I want to remind you the importance of making sure to take care of YOU when you are thinking this way. Also, please feel free to reach out and vent or send a message any time to talk about your feelings. It helps to sometimes just get it typed out or on paper. I try to have hope that science will advance and that things change (because change is the only constant in this world). I can only hope it happens soon, but if not I try my best to do my part and educate others and advocate for myself and others with this in hopes that one day people won’t have to go through this. I’m so sorry you are feeling down this holiday season, know that you’re not alone with these feelings. Here for you!

[Martina]

So now, I am off infusion pump, off Veletri. I am now on Uptravi, Sildenafil and Volibris. Plus 6 tablets of potassium daily, magnesium, Rivotril and Xanax and Furosemide 250 mg daily. For night Trittico, Mirtazapin and Quetiapine.
My mom is now sick with divertikulitide. She had to take very strong antibiotics and now she feel stomach sick. I am full of fear for her.
Often I think about suicide. I can´t live without her. I think about ways of suicide. I think knives and some pills. Knives for arms. If I cut correctly, it will be matter of few minutes. Or I can stop taking potassium and in few days heart attack. I will write letters to my sister and to my best friend. I don´t care anymore. I have no life anyway. And little niece will soon forget me. She put more focus on her computer than on her parents anyway.
Then I will finally be in no pain, no trouble breathing, no heart pain, no palpitations.