Newly diagnosed

First I would like to express how sorry I am that your Dad has passed. I know when my Dad died it was an extremely stressful time.

I sent all the information via email so if you don't receive something please let me know. One of the attachments has an overview which is good to get familiar with the disorder. The other contains different case studies of Increased Cellular Permeability and the effects with either Adderall or Dexedrine.

I am taking on fluid as the weather is constant rain and this is the time of year that I personally go out of remission. I take the medication daily but have increased to 50mg to rid my body of this fluid.

I have never noticed any differences with any meals I have eaten other than to mention I have lactose intolerance so avoid foods that would cause more bloating. Good forbid! I am up seven pounds and have lost 3 so far but the weather does not help. I have my dehumidifiers going full speed all the time. Every time they are emptied I think how wonderful they are because more of that fluid could be in me.

Let me know if there is anything else I can do to help and if you have any more questions please feel free to ask. No question is weird because with this disorder, we have an array of symptoms. Since I am not in remission, I am having PVC's which is also a byproduct of this disorder. It doesn't mean we will all get all the symptoms.

Again, I am so sorry for your loss.

Hello all!

I am back to weighing myself everyday as the fluid creeped up on me and now I am playing catch up. Lost 2 pounds in 24 hours so happy about that. I am up to 40mg which is not a lot for most but for me it is but my body knows I need it. I was still so drowsy after 30mg that I took ten more and that is doing the trick.

Send me an email through the contact page and I will send you all the attachments. :-)

Sorry I have not been on here all summer but it has been one of the worst summers for me due to my herniations in my neck. Now I am out of remission and the fluid keeps rising. I have raised my medication and am seeing Dr. Cohen today (works with Dr. Check) as I don't want to run out of medication. I can see why the doctors thought it was cardiac or kidney. I am short of breath, having PVC's again, and very fatigued.

Salt intake doesn't help with this disorder. You should have a normal intake like everyone else. The disorder is the problem with cell permeability so it causes all sorts of havoc with the body. I can send you all the information on the disorder if you would like or just some basic stuff about the disorder if you don't want to feel overwhelmed. Let me know. I will talk to you all soon.

Thanks for the reply 🙂 what is it that the Adderall actually does? Do any of you notice your symptoms are worse after certain meals or anything? Also, could I please have any literature you might have x

Hi there! Glad you found us although I’m deeply sad to hear of your hospitalization, sounds awful. I haven’t been diagnosed with any of those yet know there’s many variations on this theme. As far as a low salt diet I’ve been told this condition has nothing to do with salt intake. Although a low salt diet recommendation could be from the other diagnoses. I Definitely don’t go near diuretics. I’m not familiar with which prescription drugs are available in your country yet what I’ve been prescribed is Adderall as some others on this site which has lessened my episodes tremendously. Hopefully others will have some thoughts on your comments. Best to you! Cathy