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Thanks Issie!!

Zap: Regarding Quercetin: I understand that this blocks mast cell degranulation. I read somewhere that it increases NE levels. Is this true? So if someone is hyperPOTS with MCAS would this help or hurt?

Such great news that you are feeing better!!! When your symptoms got bad last summer, was there a specific "trigger" (i.e., a virus???) May I ask what meds you are on?

Bren: This is the place to vent! We all have those bad day where everything seems hopeless and it is on this forum where people understand what you are feeling. Hope tomorrow is a better day!!! Pam

This is such great news and gives me such hope that my daughter will get better soon!!!!

Clair: I am so sorry to hear that you are going through this. I know it is very frustrating trying to find a diagnosis (and then a doctor that knows what to do once you have been diagnosed). If you are able to at all, I would definitely try to get in with a doctor who specializes in autonomic disorders (either a neurologist or cardiologist). My daughter went to over 15 doctors before she got a diagnosis. . Don't give up!!!!

Firewatcher: Thanks Firewatcher: Thanks! After researching what I can about it I think we are going to hold off. My daughter's primary doctors don't know enough about it to risk trying it.

Zap: Thanks for all of your research. I hope someone with MCAS that has tried eucommia bark joins in on this topic. I would love to know if it made their MCAS symptoms worse or better (we were just at the ER last night for a reaction to a med so I don't think we are ready to try anything new yet).

I have been trying to find this herb for months. None of my local stores have it. Where did you order it from? Also, would you happen to know - since this is like a beta blocker ---would it degranulate mast cells like betas do? Since I have MCAS and can't take betas - wondering, since it's an herbal if it would have the same reaction. Although, it sure sounds like it would help. Rehumania is much easier to find and is in a whole lot of chinese mixtures. Rama has been talking about these two herbs for awhile and even though he says he has taken them for years - they must not be ALL he needed cause I know he's added some meds to his routine in the last half year. But, it sure sounds like it might help, still looking for my purple bandaid. I hope I can find the Eucommia bark............. Issie Issie: Me too. I have called my local health food store and they don't carry it. I do see that it can be ordered on-line but I don't much about this herb so I don't know which website is best to order through. Also, I had the same question as you since we suspect that my daugther is dealing with a mast cell issue and I am not sure if this would help or make her worse (like beta blockers do). Let me know if you find out anything about this. Thanks! Pam

My daughter had this happen to her. Luckily she had a thick head of hair to begin with. It all started with POTS - not sure what caused it. It seems to have slowed down now, perhaps because she is on multiple vitamin supplements.

Brenda: That is such great news!!! As a parent of a daughter who has POTS I know how good this must feel to see your daughter enjoying life again. Pam

Jennij: My daughter went to the Mayo Clinic in Arizona. They are great for getting all the autonomic testing, etc. done but I would suggest that you find a doctor close to home to help with the follow up (maybe they could do phone consults with Mayo after you have been there). We found it was just too hard to travel back and forth. We were told that it is easier to get in to the Mayo in Arizona in the summer and in to the Mayo in Minnesota in the winter). Hope that helps! Pam

Just wondering if anyone has tried Eucommia Bark? (I heard it is supposed to act as a natural beta blocker). I would love to know if you had any improvement or side effects.

Kayla: You are an amazing girl!! I'm glad you have a plan now. Hope you are feeling better soon.

Kayla: Sorry I couldn't answer you sooner. By now you probably are already back from your doctor's appointment. I hope it went well and I hope you are feeling better real soon. Pam

Kimbellgirl: Happy anniversary - have a great sail at sunset!!!

LMG: Sorry to hear that you are not feeling well. My daughter (23 years old) also had a sudden onsest (after a virus) a year ago. She is still not able to function (basically homebound except for doctor's appointments). She also takes B12, magnesium and Vitamin D supplements. At her last doctor's appointment they told her it would probably be another year (or two) before she recovers completely. . I know how frustrated you must feel. Don't give up!!!!

Brenda: So glad to hear that your daughter is doing better. It gives all of us parents of potsies hope that our children will soon be better.

So glad to hear that you are home and safe.

ArizonaGirl: The test that the doctor gave my daughter was a CYP2 test to check for drug metabolizing.

Naomi: The doctor believes that when my daughter had a virus back in June of 2011 that it caused Gillian Barre Syndrome which damaged nerves and when he ran some type of liver function test he said that it came back saying that my daughter has genetic problem where her liver can;t metabolize things well and that is why she has been unable to tolerate any meds. He said that normally he would start her on a steroid but since she has been unable to tolerate steroids (along with many other meds) he wants to try IVIG. Arizona Girl: Two years on IVIG - WOW!!! Have you noticed a big improvement in your symptoms? I would love to know the pros and cons that you have experienced with IVIG. (The doctor said that she will probably get a headache from the treatments, but beyond that I am not sure what to expect). Feel free to PM me with your experence. Thanks! Pam

The doctor is thinking about starting my daughter on IVIG treatments. Has anyone had any experience with this type of treatment? (Did it work, side effects, etc.) Thanks Pam

Christy: Thanks for posting this transcript! Pam

Jangle: Congratulations!!! What a great accomplishment, especially with POTS (brain fog, etc)

Tom: Yes, after a viral illness all of the symptoms started. Because of high NE levels it has been classified as hyper-POTS.