Gail,

Thanks for your response.  I started the .1 Clonodine patch less than a week ago, after being on half of a .1 pill for many weeks.  Thought it was time to titrate upwards.

I don't know about masto patients, (though would like to), but CFS and POTS patients have a 'less is more' reaction to medications.  Tend to be overly sensitive, so perhaps .1 of Clonodine is too much too soon.

I did NOT know Clondodine affected NE, (adrenaline) as you stated.  Had no idea about that.  Was using it strictly for the hyper pots, as beta blockers caused by BP to go to 80 over 40...Too low.  

Also beta blockers cause mast cells to degranulate, so it's a NO with hyper pots.

Have always had very low BP, but now it's all over the map.  Even the cardiologist's nurses are amazed by it.  Jumps all over depending on if I'm sitting, standing or supine.

Also, did NOT know histimime causes 'arousal..Will Google on that, it's good news.

Yes, am not sure what's doing what right now, but tomorrow morning I will take another dose of Allegra and Zrytec, and see how it goes.  Am appreciative for that information.

Thanks to all.  Hoping to contribute at some point, and not just need.

Best!
K

Deborah, you are absolutely correct about test results not telling which antihistamine will work better. But, for me, since my test results showed normal Histamine levels, then I wasn't surprised when I was was unable to take the larger doses.

Kitt, ppl new to dealing with something are expected to be needy. Please don't be concerned about that.

My BP was always on the low side also until I had a medical procedure. Then it went very high. When I got things settled down a bit, my BP also settled. It is now always in the normal range.

This forum is the best one for Mast Cell problems, I think. You have found a good place to learn.

Gail

Thanks for the input.  Am thinking right now I need to get the data to determine if I have masto or mca.  

Here's a good link that talks about the two.   http://stoppotsvirginia.blogspot.com/2012/07/find-your-pots-cause-wide-world-of-...

I have bone pain, and issues that aren't going to be helped by anti-histimines, and I'm not sure if the nausea I'm experiencing is due to mast cell issues or pots?  

I've read about Tramadol helping pots issues, and don't understand the mechanism, as pots is not really a 'pain' issue.  People who are using it for pots are not using it for pain, but there's some mechanism that helps.   I've also read about Tramadol being used for mca and masto.  Does anyone know anything about it, or is just used for pain?

My biggest issue is sleep, and as I've mentioned it's not helped by sleeping pills or any other pills I'm aware of.  My understanding is that the sleep disturbance is due to the high adrenaline, due to hyperadrenergic pots...Adrenaline is produced by the adrenal glands, so still don't quite see how any of that can be quieted by anthistamines.  

Gail the explanation you gave about  histamines at night was helpful, and that Clonodine helps that.  Do you have a link to this data that Vanderbuilt has published?  Am very familiar with the work of Dr. Raj there, and the work of the Mayo doctors, (Have you seen their brand new paper on pots?)  Outstanding.  As well as Dr. B Grubb's papers.  Have not seen anything from Vandy about Clonodine having this impact on Neuropeptide Y, though I keep reading about Neuropeptide Y, and see it in the 'loop' when I look at mast cell diagrams.

So am hoping the mast cell doctor can do explicit testing and clear up a few things.   Have most people on the forum gone to a mast cell specialist?  Do you feel it helped?

Sounds like I bought Allegra last month thinking it was an H2 blocker, (to add to Zyrtec)  realize now that I need to add Zantac to the mix!  Thank you for clearing that up.   Maybe if I get that combination right, I'll do better!  

Thanks again.  Good luck to Blueskies.  Hope you get good results.

Kitt, please let me know where the link that you posted came from. Such specific medical informatin needs to be verified before I can allow it to stay on the forum. It might be a wonderful source of info, I just need to make sure of its source and factual content in order to protect those of you just learning about mast cell disease from any errors that might be written. Thank you!!

Gail, that's a great paper, I'm surprised I hadn't read it.  Am going to print it out and share with my cardiologist.

I reread the part about Neuropeptide Y (NPY), and at the end of the paragraph they say 'Therefore, the physiological significance of NPY-mediated MCA remains speculative.'

Maybe that's why I've not seen reference to it in other papers.  Not everyone is willing to speculate.  Think it would be more interesting if they did.  Do you want me to email you the link to Mayo's new paper?

But it's a great paper!  What I found most interesting is this comment about hyperpots patients:  In our experience, a therapeutic trial with α-methyldopa should be considered, given the evidence of a hyperadrenergic state.  Have you heard of or tried methyldopa?  Pretty wild drug, and the first I've seen mention of it in any paper!

I realize now that I've not given the anti-histimines a good trial.  Mentioned I bought Allegra thinking it was an H-2, (Major brain fog day), and need to get Zantac asap.  Don't know why some use Zantac and some use Pepcid?  Any thoughts?  Am going to go by the pharmacy this evening and start taking per Deborah's 'recipe'.

Deborah, do you want me to send the link to you in a pm?  I found it on Dinet.

Thank you again,
K

I have to input here, as this is important:

Even if your tryptase levels are normal, you can have mast cell disease, such as MCAS. The same meds as used for Masto are used for this. So, it is extremely important to try those meds if you have mast cell disease and want to feel better. If you respond well, then that is an indication that you could have MCAS, because that is often a diagnosis of exclusion. This means that you test negative to everything else, yet still have Masto symptoms. When you try the histamine blocker meds and they work, then you are on the right path toward feeling better.

Deborah, thanks.   I appreciate that!   Especially since I still don't have my results back.

I just started on the Zantac a few days ago, and my family has been commenting on the difference in my mood (much better!) and my improved energy.    Some of my other symptoms have not changed, yet.    But I am only just getting started working with the meds.   I did not expect the mood or energy improvements.  

Thanks,
BlueSkies