castronovo112587

I would say to go naturally. There's always a possibility you may get a flare of symptoms no matter which way and it would be a lot worse to deal with a flare if you were having to deal with the healing of a c section. Best wishes, keep us posted

I'm with you Gemma I am starting to look into MCAD as the beta blocker had the same effect on me and I suddenly cannot tolerate ANY medicine and I was never that way before. The only medicine I had issues with would be codeine and morphine, I had anaphylactic responses to those. I hope we can both get answers on this. It seems that mcad is extremely hard to diagnose! I hope you have been feeling better the last couple of days.

Have you heard of pseudotumor cerebri? It's main symptom is headaches due to high CSF. Normally the headache will be worse when laying down and will cause your optic nerve to swell, have you gotten your eyes checked recently?

i am extremely sensative to all medications, so if i have to take a med for somthing it always causes me to flare in symptoms and then i start to feel better when the medicine is completely out of my system. That, my time of the month and getting sick always make me flare.

The ct scan dye makes you feel very warm all over and raced my heart a little. Hope all goes well keep us posted.

I never "added" salt to anything before pots but did eat a reasonable amount of salty food. The reason why it's helpful to pots is because of making bp higher but also because salt makes your blood thicker and many pots patients have low blood volume so this will help to increase it. If you are concerned about salt poisioning then either eat foods with a high amount of salt or regular foods not as high and add it yourself but don't do both and you should be good. Ask your cardiologist how much is too much

My brain fog has improved over 90% since cutting out the 5 most common food allergens out of my diet (wheat, soy, dairy, peanuts, eggs) and eating non processed non gmo food. My overall health as improved dramatically and brain fog pretty much non existent. I have changed my diet. I also eat a raw clove or garlic every day and drink 2tbs of Apple cider vinegar and have become more active.

i am allergic to and or sensative to every single med! It is such a pain lol.

I feel you. I started with all of this 3 days after giving birth to my 2nd child. It started with extremely high blood pressure and within a couple weeks moved to chest pain extreme brain fog and dizziness shortness of breath terrible daily headaches and my whole body feeling weak and sore Like the flu. Everyone kept telling me its because you just had a baby you'll be fine after the 6 weeks and saying I just have extreme postpartum depression and anxiety. They thought I was crazy because I was at the hospital practically every week because I knew that something was terribly wrong as I couldnt make it to another side of the room without getting so dizzy and short of breath and severe palpitations among many other symptoms. It is frustrating because like many other people have said it seems like most of us were very active "non lazy" people before our illness so you think that would make then stop and think that wow we really must feel that terrible if we are no longer able to keep up with our previous lifestyles. My husband has said that's how he knows I'm sick because my house used to be spotless and now there are periods I can't clean it and it is so frustrating to sit there in a messy house (in my eyes) andnot be able to clean it. I am lucky that for the most part everyone seems to understand and get it but at first they all thought I was just nuts and needed to be on something. I hope that things look up for you soon and your family will be more understanding.

Did they ever test you for carcinoid? The most prominent symptom is flushing and alcohol will trigger it sometimes. That's great if you did find the cause if your flushing it is such a frustrating symptom!

I've had the esophagus one though not as frequent now and your right it is hard to tell if its your heart or not. I get them usually on days I feel worse or stressed. Like did said mine don't usually hurt. They are more of just a discomfort. Only if it happens pretty violently may it hurt for a second or if its in my chest. Not sure what its from have you been checked for anemia and is your potassium ok?

Thanks guys. So glad that is out of the way so I can focus on my other problems. He said that I only have a 5% change that it will come back within the first 10 yrs

Thanks for all of your warm thoughts and wishes. The octreotide scan and 3 phase ct scan were both normal and just have to wait for my chromogranin a results which the carcinoid specialist says will be normal because it had already been tested normal 2wice in the last 8 months. That is a weight off my shoulder now I can focus on mcad testing as a possible cause for my flushing and bp drop episodes. Also looking into my thyroid as my tsh was low so tests for t3 and t4 have been ordered as well as a level to check for thyroid auto immune diseases and ultrasound. I hope to get some answers soon .

Thanks guys

Thanks

At the big cancer center here getting some scans and tests done and following up with the carcinoid specialist tomorrow. I will know tomorrow whether or not my cancer is back.

Mine is always too narrow which I understand is common with pots patients

I just took tamiflu a couple of weeks back when husband had the flu I didnt experience any side effects but the well known nausea that most people experience. Take it after eating food. Nausea only was the first 2 days. This is comming from someone who is extremelyyyy sensitive or allergic to pretty much every medicine. Also they say antivirals are tolerated a lot better by people then antibiotics. I say take it. You do not want complications from the flu. It did not affect my pots symptoms in any way.

This happens when I'm trying to sleep at night I feel it has something to do with my body having trouble with changing my breathing to a slower pattern once I'm asleep I guess its harder for our systems to make that transition like there's a glitch.

The bp doesn't seem out of the ordinary as the bp in a healthy person can fluctuate 15 points each way throughout the day and people with dysautonomia even more. On bad days my bp has gone from 140/96 to 90/56 in a matter of a few minutes just laying there. As far as the hr since your standing hr has gone lower it would make sense that your resting rate would lower as well. I was told by my cardiologist anything above 50 is normal and people who do daily cardio will often get lower resting hr over time. Ad far as the dizziness and feeling worse it could just be something triggering your dysautonomia symptoms like the cooler weather right now or something your not realizing I believe the dairy could be contributing to your headaches and dizziness as dairy can trigger headaches especially sinus ones. I have many times where my hr and bp are fine and still feel not good. I would just call your cardiologist if your concerned about the hr. Hope you get on the upswing soon

Keep us posted gjensen

I get this on my chest and face usually from something I have eaten or taking too hot of a shower. It can last a few min to hours and makes me feel on fire. Not sure if its a pots thing I do have a few allergies and am looking into MCA's testing.

I hope it helps find the cause of your fluid build up katybug. I definitely have to look into mcas testing as I have every symptom and my breathing was terrible on the Bb and pain meds like codeine and morphine have caused me to go into anaphylaxis. This forum is so wonderful as it has helped me narrow down my problems quite a bit and it's so nice to talk to people I can relate to.

My son had chiari 1 malformation. He was born with it and had brain surgery in may 2010 at age 4. It definitely can affect the flow of CFS and in addition a swallow test would be worth looking into as it can affect your swallowing capabilities. Do you snore at night? A lot of chiari patients will snore as well. So glad you were able to get the papers filled out and I can definitely see your frustration with a doctor saying one thing and then doing another and especially when the outcome can affect your family as well. I am hoping the upright MRI can give you some answers and you can get some relief from your headaches soon.

If you are on a non selective blocker it probably is the culprit. When I was on propranolol it made me short of breath constantly and gave me a terrible cough. Which one are you on? I also had more aches and pains on it as well.