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    • #32179
      Valerie
      Participant

      Hello everybody!
      I am still concerned and confused about the topic of biochemistry.
      Has anyone had problems with histamine? Histamine is a neurotransmitter. It participates in the inflammatory reaction, regulates the sleep and wakefulness cycle, body temperature, appetite, causes bronchial constriction, vasodilation. It’s immediately reacts to different stimuli and can cause different symptoms (headaches, insomnia, high blood pressure, dizziness, arrhythmia, anxiety, nausea, huge blisters from mosquito bites, nasal congestion, urticaria, and so on).
      I have a lot of these symptoms. Does someone else have something similar of “unknown origin”?
      Over the past couple of years, I have been particularly concerned about recirculators (for the prevention of COVID). Do you often come across this? I see it EVERYWHERE, and it’s – it’s relentless ultraviolet. It kill besides bad and good bacteria too. They contribute to the active release of histamine into the blood. Some people have told me that they feel bad around recirculators (but they didn’t understand why this was happening).  I can’t even stay for a couple of minutes next to the “air decontaminators” (I’m getting a migraine soon).
      I also have (like many patients with PH) chronic hypoxia (the doctor said that the body has long adapted to this). Low oxygen content is one of those factors that contribute to the accumulation of histamine in the body and disruption of its cleavage. Histamine breaks down an enzyme called diamine oxidase (DAO).
      Have any of you been tested for histamine or DAO in your blood? Or have you noticed unexplained red spots, itching or headaches after drinking wine, bananas, avocados? Do you have a problem with this? Or do you have problems with something similar (for example, with salicylates)?

    • #32188
      Jen Cueva
      Keymaster

      Hi @valeriekv, I have not been tested for histamine. I do know that many inflammatory diseases can affect PH and vice versa.

      You mention drinking wine and breaking out. I don’t drink red wine because the tannins in the wine did not work well with my body. My chest would turn red, and I started itching. I also had that effect with tequila. White wines, I was OK with.

      I don’t eat bananas, but I do eat avocados without issues. Have you had skin prick testing done to detect allergens? Or is this the histamine testing you are referring to? I know a few PHriends who did these tests and found out that they have specific allergies.

      Have you read about the antiinflammatory diet? I know two people who are following that to help with histamine intolerance.

      • #32191
        Valerie
        Participant

        Jen,
        yes, most likely, the subcutaneous histamine test is the most accurate. I just donated blood and this test was with a “borderline result”.
        Anti-inflammatory diet is my life lately. I have limited a lot of products. It’s great that you can eat healthy avocados! It literally kills me with one spoon.
        You mentioned that you know people who follow an antiinflammatory diet. Does she help them? Do these people have a PH or not? And, yes, you are absolutely right that many inflammatory diseases can affect PH and vice versa. I read all this complicated literature on biochemistry and the structure of our cells and I understand that everything is VERY DIFFICULT in the bodies of patients with PH. Maybe someone here on the forum has encountered such difficulties?

    • #32199
      Jen Cueva
      Keymaster

      Hi @valeriekv, I didn’t realize that you also are on the anti-inflammatory diet. Yes, the 2 I know with PH and on it say that they feel better overall. I am unsure if they have had any improvements in their PH or remain stable. But they say to feel better, so I would think that is a positive.

      I will post about this diet and PH on another topic if I can’t locate it. I will tag you so that you are aware and will know if anyone responds.

      I am sorry about the limited diet but hiding that you see some results. My best guess is with that diet and PH treatments eventually you would see some positives. I hate that you have such a lack of care there. I am sorry. Noone should have to feel like they have no help at all.

      • #32205
        Valerie
        Participant

        Jen,
        thank you so much for the topic! And thank you for such kind words!
        Maybe someone will respond? It seems to me sometimes that people eat everything! And I wonder, is it really like that? I understand that not everything is like that.
        It’s wonderful that an anti-inflammatory diet helps your friends who have a PH feel better! Although it forces you to limit yourself in many ways, but it’s worth it.

        • #32215
          Jen Cueva
          Keymaster

          Hi, @valeriekv; you are more than welcome.

          I do hope that others will have some feedback for you, too. But, like with our PH treatments, the diet we follow all depends on our bodies and other co-existing health issues.

          For example, most with PH are told to follow a low sodium heart-healthy diet. Because of my kidney disease and health issues, I have a low level of sodium. I have to be careful with cutting my sodium too low and balance it enough that I am not getting too much sodium. I also have certain foods that my kidney doctor likes me to limit.

          Although I eat avocado and nuts, I try to eat more whole foods. Fresh fruits and vegetables and lean proteins are my goals. But, if I want a slice of pizza, I end up paying for it most often.

          So, as you can see, it all depends on our bodies and what we have going on with our PH and the stage of PH and treatments we are on.

          I tend to see most with PH have some limitations when it comes to diet. Does this help you a little?

        • #32232
          Valerie
          Participant

          Jen,
          I agree with you that PH forces many to follow some kind of diet.
          It must be very difficult to balance the sodium level! You’re probably just like a ninja! But pizza is, of course, a strong temptation.
          I don’t think it helps me feel better. I suppose that the diet helps me NOT TO FEEL WORSE.

    • #32238
      Debbie Moore
      Participant

      I’m so new to this journey I don’t know if it is side effects from my medicine or what I eat or what I do that has caused my body to be sickly.  I do have a lot of the symptoms Valerie was talking about –  my sleep has changed, body temperature is always cold (like I wore a sweater all of the summer), appetite not much, headaches, dizziness, anxiety, nausea, rashes in weird spots, nasal congestion and swelling.  My doctor has told me to go with a low salt diet – the swelling is severe.  But I have not thought about an anti-inflammatory diet.  I have a bone spur in my foot that never gives me an issue.  For the last couple of weeks, it is inflamed and hurts to walk on it. Thank you for mentioning an anti-inflammatory diet. This could help me.

      • #32240
        Valerie
        Participant

        Debbie,
        I’m very sorry for you. Our organisms are a very complicated mystery. Maybe you really should try an anti-inflammatory diet for a couple of days?
        By the way, if it became hard for you to walk. Have you thought about orthopedic shoes? It is sold in online stores and specialized salons. I don’t really like the way most of these shoes look, but I always use orthopedic insoles. This helps the legs, as well as the back and neck. Have you consulted an orthopedist or an osteopath?

    • #32278
      Debbie Moore
      Participant

      I’ve started increasing fish in my weekly meals and the whole grains.  I already do well with fruits and veggies.  The bone spur is doing better.  I’ll keep those orthopedic shoes way back in my memory because they aren’t pretty!!  Thanks so much for the advice.

      • #32295
        Jen Cueva
        Keymaster

        Hi @debbie, the anti-inflammatory may help those bones spur. My husband, Manny, has one, and when it gets inflamed, it can hurt like heck.

        Please let us know how this diet works for you. Fish is good for us in many ways. That is a great item to add to your diet. I try and eat fish or seafood once a week at a minimum.

    • #32289
      Md. Abul Kalam Azad
      Participant

      My son is suffering from Idiopathic pulmonary Hypertension and his right heart became failure and his symptoms are same as Valere explained. He can not  have sound sleep and his appetizer become low and he feels sleepy. Can anyone give me some advice

       

    • #32296
      Jen Cueva
      Keymaster

      Hi @azad, I am sorry to hear about your son’s continued complications. Have you tried adding some extra protein to his diet with smoothies or shakes?

      As an adult with PH, when I have extra swelling, my tummy feels bloated. This causes me a poor appetite; therefore, I am not getting adequate nutrition. I add extra protein in smoothies and or shakes when this happens.

      Because my daughter is a dietician, she offers suggestions to me. Can your son’s medical team suggest a nutritionist or dietician? Also, is he limited on fluids related to his heart failure?

    • #32306
      Md. Abul Kalam Azad
      Participant

      Thank you very much for your kind suggestions. Please let me know what type of food we can supplement to his diet. Can anybody help me for his best treatment?. I have only one son. I can not bear this condition. It is very painful for me. If anybody help me to improve his condition I shall be grateful to you

      • #32307
        Valerie
        Participant

        Md. Abul Kalam Azad,

        I am very sorry for you and your son! Does your son have the same symptoms I wrote about? Do you have any opportunity to get an appointment with an immunologist or another doctor? It would be great if you were lucky enough to visit a good smart doctor.

        Have you tried to observe how each product affects your son’s well-being? Over the past couple of years, I’ve had to eliminate a lot of foods from my diet. I’m getting to the bottom of it literally. I will not eat cookies if there is vanilla in it or chicken eggs are used instead of quail eggs. I prefer to cook everything at home to know exactly what is contained in the dish. No pickled, multicomponent and seasoned dishes. I even excluded wheat flour (I am not allergic to gluten, but gluten suppresses the production of DAO in the body). No products that contain a lot of histamine. No products that release

        histamine inside the body. Only “young” fruits and vegetables (not overripe). Only the freshest dairy products (no yogurt or cheese). The freshest or freshly frozen meat, fish.

        If it is necessary to take medications, I carefully study the composition (and no bacteria L.Casei and L.Reuteri).

        I’ve heard that when you don’t understand the causes of different symptoms, a two-week diet helps. At first, you eat the simplest, like rice and zucchini. Every day you add one ingredient and find out if there is a reaction. Maybe you should try it? But not everything is so simple, of course. Sometimes (especially with food tolerance, which is not an allergy) a cumulative effect is needed.

        The table about mast cell activation diseases helped me https://www.mastzellaktivierung.info/en/downloads.html#lm_en (the table also has some commentt).

        I also found a list of only simple products with a pure composition, without additives. I often use this list (although both lists don’t always work for me). In this list, the products are divided into four colors: green (usually these products are well tolerated without causing symptoms), yellow (cause minor symptoms, rare consumption is well tolerated), orange (significant symptoms) and red (very poorly tolerated).

        I do not know if any of this will help you. Please don’t let go of your hands. This is a very difficult topic, but we have to do everything we can for ourselves, don’t we?

    • #32324
      Jen Cueva
      Keymaster

      My pleasure, @azad. I also think you will find the information that @valeriekv helpful, too.

      Thank you, Valerie, for the support and resources that you offered @azad for his son. This is so kind of you. This makes my heart happy to see how supportive our forum members are.

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