Notgivinup Posted October 21, 2009 Report Share Posted October 21, 2009 OK, i am very tired tonight, as I do not sleep well in hotel rooms. I will give a quick update, but more details tomorrow. Bev was great! spent almost two hours with me. I did a lot of the research myself and was very knowledgeable about what I thought was going on with me. (Almost 3 years of reading).Turns out I was pretty much right. We're not positive about MCAD, but she is treating me empirically. I do have the hyperandrogenic (sp? is wrong I know). A few new meds were talked about. again I will give more detail tomorrow, if you all want.But all in all my experience with her was great. she was caring, and up on everything. I know she's not Dr. Grubbs, and for more complex cases, he may be able to sort things out better. But once you see her, the wait for him is 4 months. I have an appt. in Feb to go back.So anyone not getting the right help......GO as fast as you can. They are the best! Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted October 21, 2009 Report Share Posted October 21, 2009 How did they determine that you were hyperadrenergic? And what medications did she recommend? I'd like to know! I'm glad your visit went well.Amy Quote Link to comment Share on other sites More sharing options...
Notgivinup Posted October 21, 2009 Author Report Share Posted October 21, 2009 How did they determine that you were hyperadrenergic? And what medications did she recommend? I'd like to know! I'm glad your visit went well.AmyShe looked at my extensive blood work. my norephinephrine was 987 standing. She said the work on this sub-type of POTS is in it's infancy, but was sure this was the type of POTS I had. We talked about clonidine, but she didn't prescribe it (yet). I'm still testing out the theory of MCAD. She did prescribe singulair, and provigil for the brain fog. I had been feeling good on zyrtec untill my period hit, then some symptoms returned. After this cycle is over I should know more about what is doing what. She also told me to add one aspirin a day.I am on a small dose of cymbalta. She said I could up it to 60mg. a day. That it would down regulate the receptors, and I would not get surges of adrenaline. I'm a little foggy on that one. But that's about it so far.Today I still have period cramps, and am not feeling great, but am looking forward to the next few days to see how I feel again.Any more questions feel free to ask. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted October 21, 2009 Report Share Posted October 21, 2009 That's great that your appointment went so well! I'm sure Dr. Grubb will be even better at getting you an accurate diagnosis and treatment plan. Let us know how it goes! I'm starting to wonder if perhaps I should try to go there as well....Cheers,Jana Quote Link to comment Share on other sites More sharing options...
juliegee Posted October 21, 2009 Report Share Posted October 21, 2009 I'm glad your visit was so beneficial! I have MCAD and I also take zyrtec, singulair, and aspirin daily (among other meds) & have had really good results. I also take ranitidine/zantac- I'm sort of surprised she didn't add that if you're not already taking it. It's an H-2 and the combo of the H-1 and H-2 is what seems to calm down those mast cells. The worsening of symptoms during your period doesn't mean that the zyrtec isn't working.....It is very normal to have a severe worsening of symptoms during menses with MCAD. Really bad periods have almost driven me to anaphylaxis. Note this pattern and consider asking if you could add a stronger H-1 in the evenings during that time of the month, like atarax. Check out The Mastocytosis Society Website for more info:www.tmsforacure.orgOh, one more thng. I hope you're adding your new meds one at a time with at least a week between so you can measure their effectiveness. With your hormones affecting your symptoms so dramatically, it's kind of like shooting at a moving target but slow addition helps YOU monitor effects, good and bad. All the best-Julie Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted October 21, 2009 Report Share Posted October 21, 2009 thanks for your update and hope all continues to go well.bellamia~ Quote Link to comment Share on other sites More sharing options...
futurehope Posted October 21, 2009 Report Share Posted October 21, 2009 Notgivinup,Did you see Dr. Blair Grubb at the Toledo Medical Center? Thanks. Quote Link to comment Share on other sites More sharing options...
Notgivinup Posted October 21, 2009 Author Report Share Posted October 21, 2009 I saw Bev. She was great! Quote Link to comment Share on other sites More sharing options...
Notgivinup Posted October 21, 2009 Author Report Share Posted October 21, 2009 I'm glad your visit was so beneficial! I have MCAD and I also take zyrtec, singulair, and aspirin daily (among other meds) & have had really good results. I also take ranitidine/zantac- I'm sort of surprised she didn't add that if you're not already taking it. It's an H-2 and the combo of the H-1 and H-2 is what seems to calm down those mast cells. The worsening of symptoms during your period doesn't mean that the zyrtec isn't working.....It is very normal to have a severe worsening of symptoms during menses with MCAD. Really bad periods have almost driven me to anaphylaxis. Note this pattern and consider asking if you could add a stronger H-1 in the evenings during that time of the month, like atarax. Check out The Mastocytosis Society Website for more info:www.tmsforacure.orgOh, one more thng. I hope you're adding your new meds one at a time with at least a week between so you can measure their effectiveness. With your hormones affecting your symptoms so dramatically, it's kind of like shooting at a moving target but slow addition helps YOU monitor effects, good and bad. All the best-JulieThanks for all the info!! Yes my periods are horrid! I didn't know if I should take extra zyrtec. I did add a zantac today, and I think it helped. Quote Link to comment Share on other sites More sharing options...
chipper Posted October 21, 2009 Report Share Posted October 21, 2009 Good news! Looking forward to you getting better! Mary Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted October 22, 2009 Report Share Posted October 22, 2009 Are they better than Vanderbilt? I am scheduled for Vanderbilt because of my insurance...butI can't get in until April.Thanks!!Erika Quote Link to comment Share on other sites More sharing options...
futurehope Posted October 22, 2009 Report Share Posted October 22, 2009 Notgivinup or anyone,We are talking about Bev who(?) at what facility? Thanks. I do not know who you are talking about and what facility they work at? Quote Link to comment Share on other sites More sharing options...
Maxine Posted October 22, 2009 Report Share Posted October 22, 2009 Bev is a nurse practioner who sees some of Dr. Grubb's patients. Dr. Grubb is located at University of Toledo Medical Center in Toledo, Ohio-----the South end of town. He's a cardiologist/electrophysiologist, and he took a special interest in Autonomic Nervous System Disorders.http://utmc.utoledo.edu/physicianapp/physingle.jsp?ID=75He's a kindly gentleman, and one of a handful of physicians who actually listens to his patients. He's a good guy.He has gone above and beyond the call of duty for his patients.Maxine :0) Quote Link to comment Share on other sites More sharing options...
gomindy21 Posted October 22, 2009 Report Share Posted October 22, 2009 I am so glad that your appointment went well! It sounds like there is hope in the air Mine is tomorrow with her. Thanks for updating us! Quote Link to comment Share on other sites More sharing options...
futurehope Posted October 22, 2009 Report Share Posted October 22, 2009 Thanks, Maxine. I was getting confused with the 'S' added to Dr. Grubb's name. Quote Link to comment Share on other sites More sharing options...
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