• PH and autonomic dysfunction

    Posted by brittany-foster on September 26, 2019 at 8:28 am

    For the last eight years I have been diagnosed with different types of autonomic conditions. These include: postural tachycardia- which means that when I would stand up or change positions, my heart rate would go very high and I’d get symptoms like sweating and nausea. I also was diagnosed with orthostatic hypotension, bladder and bowel dysfunction (neurogenic bladder),GI motility conditions, breathing problems (too slow with pauses in my breathing and apnea apisodes), heart arrythmias, blood pressure changes, and blood vessel abnormalities (not contracting and expanding appropriately leading to blood pooling in my legs, dizziness, and fainting.

    All of these conditions fall under an umbrella term called “dysautonomia” or dysfunction of the autonomic nervous system. This can be due to genetic conditions (I have a spinal condition that contributed to mine that impacts the nervous system) as well as damage to nerves that control the autonomic nervous system like the vagus nerve.

    Have you been diagnosed with any autonomic nervous system disorders like the ones mentioned above? Have you ever had a conversation with your doctor about autonomic dysfunction?

    jen-cueva replied 1 month, 1 week ago 12 Members · 68 Replies
  • 68 Replies
  • Colleen

    Member
    September 26, 2019 at 9:25 am

    Brittany, I am both saddened and in awe of all that you have been through and continue to live with. I’m not familiar with autonomic dysfunction so I just googled to read up on it a little. At first I thought my son’s Long QT might fall under this category but I don’t think so.

    You mentioned in another forum how you sweat a lot in your sleep. Do you think that is caused more by the autonomic dysfunction than the PH? How do you keep it all straight and narrow down what of your many medical concerns is flaring up on you?

    Autonomic Dysfunction also sounds like a rare disease to me. Is it?

    • brittany-foster

      Member
      September 26, 2019 at 9:36 am

      I don’t think it’s “rare” in itself but more so depending on what is causing it. For me it is a combo of genetics as well as nerve damage due to my various surgeries. So it is hard to treat. And yes, I definitely think the sweating and temperature regulation has a lot to do with that. Also dizziness during activity etc and feeling like I’m going to faint sometimes. Some days it is worse than others. My PH doctor actually wants to try me on a neuromuscular medication that they give to people with things like MS and nervous system disease that effect the muscle strength and tone and it also has some effect on the blood vessels and how they contract and stuff too so I’d be interested to see if it’s going to help with any of the symptoms. It’s so hard to keep all my conditions in check and definitely overwhelming !

  • jimi-mcintosh

    Member
    September 26, 2019 at 3:14 pm

    Brittany, you are truly amazing, how can someone so young endure so much?? I used to ask my daughter how she could remain so positive and bring others so much joy, when she was in so much pain and suffering. We can fix a lot of things , except those genetics.

    I keep learning a new disease or disorder from you and I have to research it. I researched your stomach issues and the invasive and non invasive treatments. Found an interesting article, and would love to share it with you.

    This has been your life and it has become your norm. God Bless You, my struggle is minor. You are an inspiration, remember to always take time for yourself. I have a friend that has suffered with MS for years, that continues to teach everyday in her motorized scooter. Surrounded by young people like the 2 of you, I cannot quit.

    • brittany-foster

      Member
      September 26, 2019 at 3:22 pm

      I’m glad my story is able to provide you with some hope Jimi and some drive to KEEP GOING even on your hardest days. I have been through really difficult days myself just recently and it always feel good to get online and connect with others that can share in my difficulty and remind me that giving up is never an option because we are all in this fight together, no matter how “small” our problems might seem in comparison to others that “have it worse”, we are all struggling and we are all trying. That’s more than I could ask for .

  • carol-volckmann

    Member
    September 26, 2019 at 4:05 pm

    Hi Brittney, don’t know how you do it!! I went on line to find out about autonomic dysfunction. Reading what it is and all the symptoms, it sounds like you have them all! Treating you with meds that can help folks with MS sounds logical. Also meds for Parkinson’s. You probably have already researched clinics that specialize in dysautonomia – I found NYU Dysautomia Center, Mayo dept of Neurology in Rochester MN, and Vanderbilt Autonomic Center in Nashville.
    Does your team believe that this disease is thd cause of so many of your symptoms? Brittney, you are one tough woman who goes through so much each and every day and is willing to show your fear, anxiety, and still find humor and the ability to help and reach out to so many giving us hope and strength. Thank you for being you! You are very loved and inspiring. Always with HUGS,
    Carol

    • brittany-foster

      Member
      September 27, 2019 at 7:58 am

      Hi Carol,
      thank you SO MUCH for looking up those centers for me. Actually my PH specialist has an interest in this too and has treated a lot of patients and has done a lot of studies on many with different forms of this condition caused from a variety of things from genetics to body trauma to conditions that impact the nervous system. There is such a wide range of what it can impact in the body and I seem to have been hit with the a lot of it (that’s what it feels like sometimes). I definitely gain a lot of encouragement from these forums and from people like you who give me a lot of strength and determination to keep hanging in there even on the hardest days!

  • azebraman

    Member
    September 26, 2019 at 9:33 pm

    Well, that might explain the fact that I sweat like a horse all the time. I take an off-label medication (oxybutynin) to deal with that.

    @brittany-foster — I also have problems with indigestion but in my case I understand those are mostly due to simply not having enough room in the area, because like you, I have severe spinal problems.

    Overall I feel like my body’s in panic overload mode just trying to get enough oxygen to the brain and muscles, and everything else gets overloaded in the process. Probably also explains why my blood pressure shoots up from 110/70 while sleeping to 150/100 just being awake.

    • brittany-foster

      Member
      September 27, 2019 at 8:00 am

      Definitely something that is worth mentioning to your medical team VK. I feel like the sooner treatments can be started the better it is and the less pain and suffering you would have to go through. This was something that has been mentioned to me numerous times in the past to explain a lot of my conditions but nobody ever actually took the time to treat it until now and I’m lucky to have found the medical team that will try new treatments and get creative for me.

    • jen-cueva

      Member
      September 27, 2019 at 5:39 pm

      V.K. It certainly sounds like maybe you should mention this to your doctors.
      Keep us posted, if they have any feedback.

      @carol-alexander, I agree, Brittany has an amazing team of doctor, thankfully.

  • carol-volckmann

    Member
    September 27, 2019 at 8:07 am

    Brittney, you really have a very special team and PH doctor. So pleased you have these folks working with you! I know you will hang in there with them. You are in my thoughts every day!
    Carol

  • jen-cueva

    Member
    September 27, 2019 at 5:36 pm

    Wow, Brittany, you certainly have many diagnoses to handle. I continue to be amazed at how you manage them all. I am here trying to manage 4-5 and struggle most days.

    Do you suffer from any “tremors” relatable to Parkinson’s? I have been diagnosed with the GI issues off and on. I also sweat and have an issue with temperature regulations. I have been having these Parkinson like tremors for years without answers. I credit it to lower blood sugars although my family and I notice these even when I am eating. No doctor seems worried.

    I hope that if you do start this new treatment, it will help some of your symptoms. Like Colleen, I wonder how the heck you even know what causes your symptoms. I am over here like a circus clown some days trying to manage my illnesses, so I cannot even imagine how you must feel.

  • azebraman

    Member
    October 1, 2019 at 7:00 pm

    Thanks for the replies, @jenc and @brittany-foster. My doctors in fact don’t really understand what’s going on, and their best estimate is that my body is fighting its hardest to supply my brain with oxygen. My body is bringing medicine into new territory.

    I also have Parkinson-like symptoms and credit it to a lack of dopamine (I also have severe ADHD). My best guess (and blanket excuse) is a lack of oxygen up there. 😉 Again, new territory, nobody knows.

    • brittany-foster

      Member
      October 3, 2019 at 1:04 pm

      The effects of low oxygen on the body can cause a lot of symptoms like the ones you are mentioning. It’s no surprise that this isn’t studied as much and the long term effects of not having enough oxygen isn’t really known about. It is good that the doctors have patients like you who can speak up and talk about your symptoms. If the brain isn’t getting enough oxygen it can do a LOT of strange things like twitches, differences in hormone levels, etc.

      • jen-cueva

        Member
        October 3, 2019 at 2:37 pm

        So true, Brittany, not having enough oxygen is quite an issue. It causes so many various issues affecting all body organs much more than we realize. I often joke and say, it is my “CRS” from low oxygen, but it is no joke. This can cause big problems.

  • jen-cueva

    Member
    May 11, 2023 at 11:27 am

    Hi @brendad53, here’s a past post discussing some autonomic dysautonomia. Maybe you will find the shares from others helpful.

    • brenda-denzler

      Member
      May 11, 2023 at 11:33 am

      Thanks, Jen. I had a friend with Stage 4 breast cancer who had been on constant chemotherapy for 6 years. She and I were exercising one day. Walking around a small lake. She went lap after lap after lap, and I struggled more and more in trying to keep up with her. I was NED for 6 or 7 years, at that time. No chemo. Nothing. But I couldn’t keep up with her. She suggested my symptoms might be dysautonomia, and I realized then that she might be right.

      So the cardio-oncologist mentioning it, too, was significant for me. It’s interesting to read these messages (above) and realize that others may have similar issues. Thanks.

      • jen-cueva

        Member
        May 11, 2023 at 2:11 pm

        Hi @brendad53, wow, that’s an exciting story and coincidence. I’m just grateful you finally got your much-needed answers and, hopefully, some relief.

        I’m incredibly proud of how far you’ve come since you joined us in the forums. Emotionally, you’ve made it through some complex challenges! Have you had a nice dinner and maybe some ice cream to celebrate answers and that the heart cath is over?

      • brenda-denzler

        Member
        May 12, 2023 at 10:00 am

        Jen, it does help to have supportive “others” who know what you’re talking about as soon as you’ve said something. Mama Bear, in particular, has been a rock for me.

      • jen-cueva

        Member
        May 12, 2023 at 1:14 pm

        I’m so grateful that you know @mamabear007 so well; she has been your rock. She also introduced you to the forums, which we are thankful for.

        It helps so much when others “get” it! Hugs to young, my dear PHriend. I hope you have a fun and relaxing Mother’s Day weekend!

      • v-r-peterson

        Member
        May 12, 2023 at 3:40 pm

        @brendad53, I consider it an honor to be able to walk along side you during your journey.

      • jen-cueva

        Member
        May 15, 2023 at 2:12 pm

        Hi @mamabear007, I love the friendship that you and Brenda have. Did y’all meet online in a CTEPH group, or how? You probably shared before. However, my mind is not as young as it once was. 😉

      • brenda-denzler

        Member
        May 15, 2023 at 2:46 pm

        We met, Jen, because I asked the PHA for a support person, and Mama Bear was assigned to me. I got lucky! 🙂

        Brenda

      • v-r-peterson

        Member
        May 16, 2023 at 7:36 am

        @brendad53, we both got lucky. 🤗

      • jen-cueva

        Member
        May 17, 2023 at 12:28 pm

        Hi @mamabear007, I LOVE the connection you and Brenda have built from just that one match-up from PHA. That’s so cool!

        When I was first diagnosed, PHA was the only resource I knew. I have many long-term PHriends that I connected with on the old PHA chat and journaling platform. For that, I’ll always be extremely grateful.

      • v-r-peterson

        Member
        May 17, 2023 at 1:06 pm

        PHA truly is a wonderful resource!

      • jen-cueva

        Member
        May 18, 2023 at 1:34 pm

        Indeed, I agree,@mamabear007. With PHA and PH News available, I believe that recently diagnosed patients have ample resources to support them.

        Thanks again for your continued advocacy.

      • jen-cueva

        Member
        May 17, 2023 at 12:26 pm

        Hi @brendad53, that’s so cool. I thought you were connected on a CTEPH call. Yes, @mamabear007 does so much with the PHA call support line. I’m not certain if all know that. But she’s done that for years.

        How many years, has it been, @mamabear007? I would say anyone connected to her would be lucky, as you shared. Although she doesn’t have PH, her experience as a caregiver for her son, she has many valuable resources.

        How are things with you this week, Brenda? Anything new?

      • v-r-peterson

        Member
        May 17, 2023 at 1:09 pm

        @jenc asked, “How many years, has it been, @mamabear007?”

        I think I started with being a mod for the CTEPH FB group in 2018. When I found out I could do more, I started volunteering for the PHA support line and e-mail support. After awhile I started burning out, so now I’m just doing the e-mail support and modding the FB CTEPH group. There may come a time when I rejoin phone support, but that’s up in the air.

      • jen-cueva

        Member
        May 18, 2023 at 1:49 pm

        Hi @mamabear007, I wonder if I interacted with you during those years.

        This all takes a lot of energy. Although I know you wish you could help everyone, you’re only one person. Rest and breaks are essential.

        Your reply made me think about a column I did in the past. It is about taking a break from medical talk, etc.

        Below is the link in case you missed that one. Please give it a read and let me know your thoughts.
        My self-care strategy includes ‘no medical talk’ days

      • v-r-peterson

        Member
        May 18, 2023 at 3:37 pm

        Thank you for writing the article, @jenc. It really hit home.

      • jen-cueva

        Member
        May 22, 2023 at 12:57 pm

        Hi @mamabear007, I’m grateful that this column hit home for you. Hopefully, you can take notes and take those days “off,” too.

        Thank you for taking the time to read my column and sharing your takeaways. It’s why I continue to share my experiences with my writing.

      • brenda-denzler

        Member
        May 17, 2023 at 2:42 pm

        Not a lot new. Have gone back to pulmonary rehab. I’m frustrated at how slow and low I have to go in order to mitigate chest pain. How do you build up your stamina and endurance and lung capacity if you’re having to slow down because your heart can’t keep up and you’re having chest pain? Argh!

        I’ve been going and doing a lot these past 3 days, so I have have a couple of days where I don’t go and do, so I can rest up. My younger son came out and weed eated my whole yard and the right-of-way. I’m sure thankful for THAT!

        Got the official results of the L&R heart caths. Am trying to make sense of what they say. My first read, comparing the data with what are supposed to be “norms,” suggests that my heart is more compromised than I thought. So I suspect I’m not reading it quite right. Heads up, Mama Bear! I’m going to be sending it to you for your informed-but-not-a-doctor opinion on what you see.

      • v-r-peterson

        Member
        May 17, 2023 at 3:51 pm

        @brendad, I’ll watch for your e-mail.

      • jen-cueva

        Member
        May 18, 2023 at 1:56 pm

        Hey @brendad53, I’m happy you are back at pulmonary rehab. I can relate to your frustrations and need to go slow.

        For me, I have that issue, too. If my breathing is not so bad on days, my heart continues to race and become tight and heavy, requiring me to stop and rest.

        Thankful that your son came to do some yard work. It’s always a huge help when others can jump in and help. Is that the same one with you for the cath?

        You should rest and eat your ice cream for the next few days.

        I’m sorry your final results were posted. I am sorry you feel it’s showing worse heart issues than the cardio mentioned. I’m hopeful that with MamaBear’s review, you’ll have a better understanding.

        You can also ask us questions. We all have had experiences with reading these results for ourselves or loved ones.

      • brenda-denzler

        Member
        May 18, 2023 at 2:46 pm

        Jen, it’s both nice to hear — because I know I’m not alone and that this is normal — and frustrating. I am so NOT aging gracefully!!!!! 🙂

      • jen-cueva

        Member
        May 22, 2023 at 12:44 pm

        Hi @brendad53, yes, it’s so much better traveling this new journey with others who understand.

        Brenda, I beg to differ. We all age gracefully, or at least we can believe that, right? 😉

      • brenda-denzler

        Member
        May 22, 2023 at 3:41 pm

        Nope, Jen! I’m kicking and fighting and screaming obscenities about the physical limitations involved the whole way! 🙂

        I figure it’s why I’ve lived this long. God don’t want me up there until he has no real choice, because he’s not looking forward to the looonnngggg conversations we’re going to be having! :). :).

  • Colleen

    Member
    May 17, 2023 at 3:38 pm

    @brendad53 I guess one way to look at it is that whatever small amounts of pulmonary rehab you can endure is better for you that none at all. Be kind to yourself and find the worth in what you are able to do.

    Sounds like you raised your son well for him to help you as he did! It must have felt good to see that work get done but even better that it was your own son who did it for you!

    Update us with @mamabear007 cath results interpretation. May there be answers and a helpful plan to follow!

  • brenda-denzler

    Member
    May 18, 2023 at 2:45 pm

    Is there any way for me to upload the PDF of the LR heart cath results, here?

    Brenda

    • v-r-peterson

      Member
      May 18, 2023 at 3:43 pm

      @brendad53, the only way would be a screenshot and then insert it as an image (the square with a mountain and sun inside the square, at the top of the font and paragraph editing tools).

      That said, I’d be careful about doing that because of the included personal information that has nothing to do with the results — things that could lead to identity theft. It might be better to copy/paste just the results (if that’s allowed). Maybe @jenc can chime in and provide guidance.

      • brenda-denzler

        Member
        May 18, 2023 at 7:41 pm

        What about this:

        History

        Dr. Brenda Denzler is a 69 year old female with a history of hypertension, asthma, PE (on Eliquis), breast cancer w/ prior radiation therapy), and peripheral neuropathy who presents for evaluation of chest pain. Presented to the ED on 4/25 with a complaint of exertional chest pain and shortness of breath. Workup that time largely negative and referred to Chest Pain Transition Clinic. Concern for possible underlying coronary disease contributing to symptoms versus possible restrictive process given history of prior radiation therapy.

        Procedure

        Left Heart Catheterization (Right Femoral)

        Under Lidocaine 2% local anesthesia, a 6F sheath was placed in the right femoral artery using modified

        Denzler, Brenda  Printed by Joseph Stuart Rossi, MD
        Seldinger technique. Left heart catheterization was performed by advancing a 6F Angled Pigtail catheter across the aortic valve. The LVEDP was obtained. A left ventriculogram was performed by power injection through the Angled Pigtail catheter with Omnipaque. Selective coronary angiography was then performed in multiple views by hand injections of Omnipaque using a 6F JL4 catheter to engage the left coronary artery and a 6F JR4 catheter to engage the right coronary artery.

        Following the procedure, the sheath was removed and manual compression was applied to achieve hemostasis. The patient tolerated the procedure well without any complications.

        Right Heart Catheterization (Right Femoral)

        Under Lidocaine 2% local anesthesia, a 7F sheath was placed in the right femoral vein using modified Seldinger technique. A balloon-tipped catheter was introduced into the sheath. The balloon was inflated, and the catheter was advanced through the right heart chambers into the pulmonary wedge position. Right-sided pressures were obtained simultaneously with LV pressures. PA saturations were drawn. Thermodilution cardiac output was performed at least in triplicate. Upon completion, the PA catheter was removed, and the sheath was removed. Manual pressure was applied until hemostasis was achieved.

        ____________________________________________________________________________
        FINDINGS

        Right Heart Catheterization

        Pressures

        Right atrium Mean 9 mm Hg
        Right ventricle 30/12 mm Hg, End-diastolic 11 mm Hg
        Pulmonary artery 36/12 mm Hg, Mean 23 mm Hg
        Pulmonary capillary wedge Mean 16 mm Hg

        Arterial saturation: 94%
        Mixed venous saturation: 69%

        Fick
        Cardiac output: 6.6 L/min
        Cardiac index: 3.3 L/min/m^2

        Systemic vascular resistance (SVR): 969 dynes*s/cm^5
        Pulmonary vascular resistance (PVR): 1.06 Wood units

        Thermal
        Thermal cardiac output: 5.9 L/min
        Thermal cardiac index: 2.9 L/min/m^2

        Systemic vascular resistance (SVR): 1084 dynes*s/cm^5
        Pulmonary vascular resistance (PVR): 1.18 Wood units

        Hemodynamics and Left Heart Catheterization
        · Aortic pressure: 117/67 mm Hg (mean 89 mm Hg)
        · LVEDP = 17 mm Hg

        Coronary Angiography
        Dominance: Co-dominant

        Left Main: The left main coronary artery (LMCA) is a large-caliber vessel that originates from the left coronary sinus. It bifurcates into the left anterior descending (LAD) and left circumflex (LCx) arteries. There is no angiographic evidence of significant disease in the LMCA.

        LAD: The LAD is a large-caliber vessel that gives off one diagonal (D) branches before it wraps around the apex. D1 is a moderate-caliber vessel. There is no angiographic evidence of significant disease in the LAD.

        Left Circumflex: The LCx is a large-caliber vessel that gives off two obtuse marginal (OM) branches and then continues as a moderate vessel in the AV groove. OM1 is a small-caliber vessel. OM2 is a large-caliber vessel.

        There is no angiographic evidence of significant disease in the LCx.
        Right Coronary: The right coronary artery (RCA) is a large-caliber vessel originating from the right coronary sinus. It bifurcates distally into a small-caliber posterior descending artery (PDA) and very small posterolateral
        (PL) branches consistent with a co- dominant system. There is no angiographic evidence of significant disease in the RCA.

      • jen-cueva

        Member
        May 22, 2023 at 1:05 pm

        Hi @brendad53, and @mamabear007, I think what Brenda shared is fine. But only if you are OK with your name being out to the general public and the doctor’s info.

        I worry more about identity theft for you, Brenda. It’s a scary world out here, and people are ruthless with things like that.

        How are you feeling this week, Brenda? Let us know if you have any other questions.

      • brenda-denzler

        Member
        May 22, 2023 at 3:38 pm

        Darn! I thought I’d taken out my MRN. Can one of you admins change that? Take out the identifying info — like my MRN. I took it out in other locations, but obviously missed one!

        As for how I’m feeling…it’s interesting. (1) I’ve been taking D-ribose about 3x a day (2g each time) because it seems to help some people with congestive heart failure. I figured I’d give it a try.

        My chest is not getting tight and hurting as quickly as it was. And I just now did a lot of walking (“lot” of walking) and pulled a cart about 150 feet that had 30# of dog kibble in it, and lifted the kibble out of the car trunk, into the cart, from the cart to the front deck/porch, and from there to inside the front door. I was breathing hard, but my chest wasn’t hurting. So….who knows?

        I think after I’ve tested out the D-ribose for another week, I might add carnitine to it. My pulmonologist wanted me to try it, but it just made me put on a few pounds by making me retain water. So I quit taking it. I might try it again with the D-ribose and see what happens.

        (2) I just got back from talking with my massage therapist (a treat I afford only a couple of times a year) about how to breathe. She is a true *therapist* with her massage. It’s not just about feeling nice while she’s rubbing you down. We talked about the various muscles you use to breathe, breathing exercises, scar tissue and adhesions…. The stuff that I *thought* I’d get from pulmonary rehab but am not getting. So I’m pleased about that.

        Pulmonary rehab is not useless. It’s good exercise. It’s nice to be around mostly the same people every time, so there’s a good group vibe going. It’s good to have trained medical personnel who were able to watch me exercising and having chest pain, etc., which is what got me to have the L heart cath (with the R thrown in) and thus more definitive info about what is going on with me. So it’s contributed to my life in some good ways.

        But when it comes to breathing and how to do it most effectively….my massage therapist wins!

      • jen-cueva

        Member
        May 23, 2023 at 1:44 pm

        Hi @brendad53, I removed your MRN; let me know if you see anything else you need me to edit.

        Wow, you may have found some relief with the D-ribose. Then, as you mentioned, you could try adding the carnitine. I would love to hear your thoughts as you continue it another week.

        I’m aching after reading about that massive bag of kibble! Zoe’s bag of kibble weighs 6-10 pounds; hehe. With all this, you must have some muscle tone, my PHriend!

        The massage therapist sounds like a great resource to help you with breathing. Massage therapists do much more and are often quite educated. I’m grateful you have found one who will be a good match for you and breathing issues. This is one resource I don’t think we have talked about. I may start a new discussion on massage therapists. I’ll tag you if I do.

        Thinking of you and praying with all o this new information and resources, you will get some relief.

      • brenda-denzler

        Member
        May 23, 2023 at 10:11 pm

        Well, today I found the boundary of where the D-ribose will let me go. I certainly can do more without getting pain and tightness in my chest. But the supplement has not, so far, totally gotten rid of the pain if I’ve pushed the envelope. And today I pushed it.

        And it seems to have no effect on my breathing. I still pant when I try to do most anything, and can no longer walk and talk at the same time.

      • v-r-peterson

        Member
        May 24, 2023 at 10:04 am

        @brendad53, it sounds like today is a good day to rest and let your body catch up after pushing the envelope. {{{hugs}}}

      • brenda-denzler

        Member
        May 24, 2023 at 10:11 am

        Indeed, Mama Bear, today will be a low-yield day in terms of getting things physically done. Might take a load to the recycling center/trash collection site. Will probably vacuum the carpets because I can’t stand it any longer! LOL! Finished loading the dishwasher this morning, so might wind up unloading it. But no mowing or other yard work.

        I trust things are going well — or at least bearably — with you?

      • v-r-peterson

        Member
        May 24, 2023 at 10:17 am

        Yes, Brenda, things are going great. Got a good rainstorm last night, something that is always welcome when living in the desert.

      • jen-cueva

        Member
        May 24, 2023 at 12:20 pm

        Hi @brendad53, I agree with Mamabear that you need a rest day! Recycling, doing dishes, and vacuuming don’t count, my PHriend!

        Like you, I was a busybody when diagnosed and often pushed my limits. Over time, I learned to take rest days or a few hours off daily without chores, lifting, or yard work! Who am I kidding? I doubt I’ve done much yard work since my diagnosis. I did help Manny at times, but not much to report.

        The panting and SOB might not be relieved, but with your various approaches, there’s hope for symptom relief.

      • brenda-denzler

        Member
        May 24, 2023 at 4:29 pm

        Well, I had pulmonary rehab today, so went to that. When I got too far and my chest was tightening up and I had some pain radiating into my throat and my head was feeling “fuzzy” — I stopped. Of course, this catches the attention of the nurses who are running the rehab class. But there’s nothing to be done about it, except stop doing stuff and take a rest.

        After that I went to Evil Wally for a few things, picked up supper at Wendy’s, and came home. I’m carrying in things from the car bit by bit, as I make trips outside for other things.

        Recycling will wait for tomorrow. Unloading the dishwasher will no doubt likewise do the same.

        Jen, I feel for you, struggling with your doctors about your health status after all this time. It’s this kind of thing that just makes me crazy about the health profession! (And not crazy in a good way!)

        Mama Bear, enjoy the rain. I’ve been in the desert a few times when it rained. It smells nice, if I recall correctly. 🙂

      • v-r-peterson

        Member
        May 24, 2023 at 4:43 pm

        Oh yes, @brendad53, fresh rain smells wonderful! It started again a few minutes ago. I LOVE it!

      • jen-cueva

        Member
        May 26, 2023 at 12:19 pm

        Hi, @brendad53; pulmonary rehab and Wally World all in one day is a marathon! Do you walk at WW or use the carts?

        Grateful you now know to stop and rest, despite doing so while driving to Wally World. I hate to use my spoons for WM. But recently, we signed up for Walmart Plus (<$100/yr), which pays for itself over time—free delivery of orders over $35. Faster delivery is available, too, with an upcharge, maybe $10-$15. Our Walmart's far & hard for me to go to, so we sometimes do online shopping. This week, I learned to chat with shoppers via the app w/ any questions on out-of-stock items. Yes, Ma'am, my mental health's been a mess, and while we deal with the need for HCPs, more work must be done to improve. I bet y'all need the rain, too, @mamabear007. Despite the extra rain here, they are saying still not enough to avoid wildfires. Stay safe, and enjoy the rain and the fresh scents as it hits the desert.

      • brenda-denzler

        Member
        May 26, 2023 at 12:26 pm

        I was going to use the cart at Wally World, but ended up leaning heavily on a push cart. I wasn’t gadding about. I had a list (fairly short) and was not looking around a lot. Probably should have used a cart, but….

        Today I got up and did the usual morning ablutions, fed the critters, took my meds and made my coffee, did some computer work, mixed up bird seed and filled my feeders, made lunch…. I want to take my pups on a short drive to the pet supply store, today. To give them a treat (the temp is cool today) and to get necessary supplies. But I’m also very tired, today. Probably shouldn’t push.

        Who knows what will win!?!

        This is what makes me angry about my physical limitations. I need to make the pet store run. The weather is perfect for taking my pups as a treat for them. (They like to “go”.) But I’m honestly so tired today…. Really PO’s me.

      • v-r-peterson

        Member
        May 26, 2023 at 12:40 pm

        @jenc, it’s supposed to rain again tonight and tomorrow. I’m afraid it will rain enough to make all the local flora grow, and then when summer arrives, the larger-than-normal plants will all dry up in the heat. One lightning strike is all it will take to set the entire mountain afire. It has done that several times during the 30 years we’ve lived her, but thankfully, the county has always got the fires under control before it reached our house.

  • gemma

    Member
    May 18, 2023 at 3:30 pm

    Hi,

    I’ve just come across this thread and I’m blown away these there are people who have PH and autonomic dysfunction!!! I’ve had PH for 9.5 years which is stable and last few years been struggling with a number of symptoms in particular dizziness and occasional fainting, heart rate jumping from 60 to 126 in a second.  I was diagnosed with POTS in November last year. I actually started new medication yesterday for the first time for the POTS as the dizziness has got out of control. I’ve really started to doubt myself and think it’s all in my head as over the years had so many tests and I’m told “no you don’t have anything” but yet I can black out at any stage and feel dizzy so how can that be! My PH team doesn’t seem to be thinking it’s linked – I am a little bit sceptical as how can I have 2 rare diseases with no cause and yet they all effect the blood vessels! I would love to hear from everyone who is going through the same thing.

    Thanks,

    Gemma

    • brenda-denzler

      Member
      May 18, 2023 at 7:46 pm

      Gemma, me! My Onco-cardiologist (specializing in late effects of cancer treatment) has suggested that my autonomic nervous system was damaged by my treatments. Dysautonomia. He wants to do a test that, I gather, will tell him more. It won’t happen until early July. Keep me/us posted here about what is going on with you. I’ll do the same, as I get more info.

      What drug are you taking now?

      • v-r-peterson

        Member
        May 22, 2023 at 3:38 pm

        @brendad53, I pray that the test leads to treatment that helps you find your health and deep breathing. 🙏🏻

      • tris-windle

        Member
        May 25, 2023 at 2:16 pm

        I had CHOP+R Chemo for non-hodgkins lymphoma and have dysautomia and PAH. Neuropathy and vasculitis. My cardiologist said my heart issue, seperate from the PAH, is due to chemo. I’d be interested in knowing if vasculitis and dysautomia are also due to the chemo. If so, how do they test for that?

      • brenda-denzler

        Member
        May 25, 2023 at 2:34 pm

        Tris, it does sound like there are a few of us here who have these problems. I think there are long-term side effects of cancer treatment that are under-tracked by oncologists and most definitely under-warned-about among cancer patients. I guess the trade-off is “accept this treatment no matter what it may do to you down the line” or “die now.” Still, if one knew ahead of time….

        What galls me is that if doctors had paid any attention to me 10 years ago when I was reporting these symptoms, maybe their progression could have been slowed? Or even halted? Maybe?

        But they wouldn’t listen.

        I don’t have vasculitis, as far as I know! But I’m pretty sure I have dysautomia.

      • jen-cueva

        Member
        May 26, 2023 at 12:26 pm

        Hi @twindle17, it certainly sounds like it’s possible that your cancer treatment, too, could be the culprit.

        I told my therapist yesterday about the “slippery slope” we often fall into. I’m often told I have a ton of prn (as-needed) medications. They are to help with the increased symptoms caused by treatments to help manage my other chronic illnesses.

        My kidney disease was linked to years of diuretics to help my congestive heart failure. I’m sure most of you can share at least one example. I need to create a new topic for that soon.

        I’m sorry that so many of you have that experience, too. Thanks for sharing, Tris.

    • jen-cueva

      Member
      May 22, 2023 at 2:11 pm

      Hi @gemsy-elizabeth, I’m sorry that you have PH and POTS. I was tested for POTS when I was still in the looking for diagnosis stage. Then again, a few years ago, but they said I didn’t have it. Below I’ll share a topic link of another conversation about PH and POTS.

      POTS with PH?

      I’m grateful you started on a new treatment. Like Brenda, I am curious as to which treatment you began. Dizziness is neither fun nor fainting, not knowing when it may happen.

      There are specific centers in larger cities that specialize in POTS and dysautonomia. Here’s a link to one I was told about in Dallas, Texas. You may find this helpful. Maybe your area also has a similar dedicated center.

      POTS treatment Center

      Please keep us posted on how you are doing with your new medication.

  • becky

    Member
    May 25, 2023 at 4:43 pm

    Both my husband and myself have moderate pulmonary hypertension. I have had a R & L heart cath last August 2022 but today our cardiologist set him up for his heart cath. His (2nd) echo showed mild MAC with moderate mitral regurgitation, moderate tricuspid regurgitation, moderate tricuspid regurgitation, mild PH, mild pulmonic regurgitation, PR PHT 354ms. He also has moderate tricuspid regurgitation as I do. What I am wondering is how many married couples of 50+ years both have PH? I also have a great deal of central apnea episodes on my sleep studies. I am assuming it relates to the autonomic nervous system.

     

     

     

  • jen-cueva

    Member
    May 26, 2023 at 12:38 pm

    Wow, @rebeccacomer, that’s indeed rare, or I would think. You and your husband both have PH. Were you both diagnosed since last year, then?

    However, we have a PH couple, @mrperry009, and his lovely wife, Susie. But they met because of PH, at a support group meeting, or PH Conference.

    Congrats on your 50 years! My hubby and I are 31 years old, and I can only hope we can keep on going and managing my PH and other conditions to reach that 50-year milestone!

    So, are you treated for sleep apnea? If so, has it helped your PH pressures or symptoms? Does your husband have any underlying health concerns? Is that why he was seeing the cardiologist? I can only hope that with his heart caths, it won’t be a PH diagnosis for him, too, as Echoes are only estimates. It sounds like he has leaky valves, so I hope you will update us when he does have his heart cath.

    Thanks for sharing, and let us know how we can best support you and your husband with this journey.

  • ellen-driscoll

    Member
    June 5, 2023 at 12:04 pm

    Hi Brittany,
    We have SO much in common. I too have dysautonomia and PAH both are thought to be related to spine issues. I had a pretty severe scoliosis and had 3 spine surgeries. After the last surgery, I couldn’t get out of bed without my BP dropping and tachycardia, sometimes followed by bradycardia. My symptoms include bladder and bowel dysfunction, abnormal sweating, temperature dysregulation, exercise intolerance, blood pooling and swelling in extremities, extreme fatigue during flares and many other issues. Anyway, I was diagnosed with dysautonomia (an unspecified type) and my dyspnea was excused by that for many years. When my breathing got worse every 6 months or so, my PCP sent me to a new pulmonologist who sent me to a PAH expert and I was finally diagnosed with PAH. In all that mess, who knows what really came first. Since I remember many episodes of tachycardia and chest pain and breathing issues for years before, I believe I had underlying PAH before dysautonomia, but I can’t say that for certain. I work with a nonprofit called DINET (Dysautonomia Information Network) and the information there and on the forum has helped quite a bit in understanding dysautonomia and in managing some of the symptoms (https://www.dinet.org). I personally believe there are many people with both and wouldn’t be surprised if dysautonomia is eventually considered a comorbidity to PAH. Rest assured, you are not the only one – we are out here! Wishing you the best.

    • jen-cueva

      Member
      June 5, 2023 at 12:54 pm

      Hi @ellen-rose-driscoll, Thank you for sharing the DINET link. How long have you been with the nonprofit? Do you moderate the forums or contribute in another way?

      Intriguingly, you believe there may be a connection between dysautonomia and PH. I have been tested twice for POTS since being diagnosed with PH over 18 years ago.

      The website would be a valuable resource for individuals with PH who have questions about any autonomic dysfunction. I will inform @brittany-foster of this post, so she can read it when she has a moment. She’s currently busy managing her health.

      How are you managing to balance work with your health and ongoing symptoms?

    • jen-cueva

      Member
      February 16, 2024 at 1:06 pm

      Hi, @Ellen Driscoll – It’s weird how the world and our bodies work. Last week, I was diagnosed with dysautonomia and POTS. I began a medication at a baby dose, midodrine, on Friday. My PH team diagnosed me after doing a few tests. He’s a colleague at UCLA who runs a clinic explicitly dedicated to treating and researching dysautonomia, many related to post-COVID.

      Because my BP dropped dangerously low during the test, he didn’t want me to wait. Today, we doubled the medication. He said they use this medication to help POTS, and they also know of all the newer treatments and research. I’m awaiting a call back to schedule that appointment with a cardiologist.

      Ellen, since you are the president of DINET, have you heard of anyone who has tried this or other medications to help combat some of these symptoms? Unfortunately, I am supposed to “take it easy” a bit more. I haven;t driven oin over 2 weeks now. “Take it Easy” takes on different meanings, right?

  • ellen-driscoll

    Member
    February 16, 2024 at 5:41 pm

    Hi @jen-cueva I’m sorry you have had to add another thing to your list but I am glad you received the diagnosis. That is half the battle. You will find so many similarities to dealing with PH.

    To answer your question, yes, midodrine is one of the most common medications used to help with POTS symptoms. Did they identify the type of POTS that you have yet? There is a great video on the DINET Youtube channel about the different types. An RN discusses them in layman’s terms. You may find it helpful. The other common medication is fludrocortisone. Fludrocortisone helps the body maintain fluids and sodium, whereas midodrine helps to control blood pressure by constricting vessels. If they don’t suggest it, you may want to ask if they think compression stockings may be helpful. A lot of people with POTS swear by them. If they recommend them, have them fitted through a prescription, don’t just buy OTC, they aren’t usually as effective. I know you have a lot going on, but you may want to join the forum at DINET too. Just like this forum, it is moderated to stick to the subject and it is patient to patient. The forum is free and anonymous. And you can always contact me directly. Good luck with it all and we are here! It does get better over time. Here’s the video if you are interested.

    https://youtu.be/U0s26KdDDdU?si=U4iuaBWCgXo_tpCw

    • jen-cueva

      Member
      February 19, 2024 at 3:01 pm

      Hi, @Ellen Driscoll. Thanks so much for your kind words and support. The one specialist I suggested is no video and no longer accepting new patients. So, either I wait until Summer to see another one or GOP elsewhere for treatment. I did reach out to a doctor and processor in SD whio has researched this topic and helped many patients. I’m hoping she will reply to me.

      I’ll take a few more minutes this week and check out the YouTube video you shared. It is all greatly appreciated.

      Thanks again, it’s helpful.

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