Mack's Mom

[futurehope]

I've been reading with interest your posts about MCAD. I do not think I display those symptoms mentioned for MCAD. But I did a quick Google search on methylhistamine in urine, and one result of the search was WHAT foods to avoid before a test of the methylhistamines in the urine.

What is interesting to me, is that ALL the foods mentioned (to avoid), are on a list as to what to avoid if you have interstitial cystitis (IC). I have IC and I need to be on hydroxyzine HCL 25 mg daily. I also happen to take raniditine 150 mg daily. It is obvious to me that there is some connection between mast cell activity and IC. Maybe all this "histamine/mast cell" stuff is contributory to my POTS as well as the IC?

Do you have any opinions or questions to ask me to see if a specialist could help me with my POTS nad IC? Thanks in advance.

[jjb]

I am interested in the correlation too. The neuro I saw, seemed to imply my supposed IC is related to dysautonomia. I go for a thorough eval in a couple fo weeks, I will try and get more answers re this.

The doc I will be seeing is Dr Peter Novak in MA.

Do you have any opinions or questions to ask me to see if a specialist could help me with my POTS nad IC? Thanks in advance.

[juliegee]

I had IC years ago before I was DXed with POTS or MCAD. Yes, there is a high correlation between MCAD and IC. At the time I had IC, I wasn't aware of POTS symptoms. Futurehope, you are essentially being treated for MCAD with your atarx and ranitidine.

I am so sorry for those of you dealing with IC. It was so incredibly painful and frustrating. I think science has come a long way since the dark ages when I had it. I took daily antibiotics or sulfa drugs and lots of cranberry juice. It did NOTHING to help me.

Julie

[futurehope]

I had IC years ago before I was DXed with POTS or MCAD. Yes, there is a high correlation between MCAD and IC. At the time I had IC, I wasn't aware of POTS symptoms. Futurehope, you are essentially being treated for MCAD with your atarx and ranitidine.

I am so sorry for those of you dealing with IC. It was so incredibly painful and frustrating. I think science has come a long way since the dark ages when I had it. I took daily antibiotics or sulfa drugs and lots of cranberry juice. It did NOTHING to help me.

Julie

I really appreciate your response. I've always told the doctors that there HAS to be some correlation between GERD, upset intestines, POTS, IC. Everything seems to be in a state of inflammation, so it seems logical that there is a cause.

I see you take twice as much ranitidine as me. I take 150 mg and you take 300 mg. Is that two pills/day at 150mg each? I also take 1 Nexium/day for GERD. I WAS on Singulair once, but noticed it affected my ability to sleep. The doctor didn't believe me, but it's true. I had asked my allergist about MCAD, and he just looked at me and gave no response or opinion. I also get allergy shots once every two weeks and I notice I feel much more tired the day of the injection. The allergist had no response to that either.

My IC is MUCH better on my prescriptions than off. Much. So don't pity me. I'm a success story with that. I did ask my urologist last week what he thought of "mast cell" problems as the cause of IC. (He's a researcher, BTW). He answered, that mast cells were "the rage" back in the 90's, but other than that, he left me with the impression that theories come and theories go. Whatever?! I do know I'm much better.

What I would really like to know is WHAT, if any, symptoms of POTS have you noticed a lessening of since using the H1 and H2 blockers?

[juliegee]

When my MCAD is out of control, I have what I call "low grade anaphylaxis". Anytime I stand still the blood pools in my feet and legs and they turn dark purple. My BP drops out and my HR is very fast. My throat and chest get tight intermittently throughout the day, I feel very lightheaded and I have a hard time thinking. I get hives off and on and I sometimes flush. When things are very bad, I have trouble eating. I am very nauseous.

ALL OF THAT IS IMPROVED ON H-1 and H-2 BLOCKERS. I probably still have POTS on meds, but just barely. When I'm very symptomatic, my HR goes up 60 BPM after a minute or so. Daily preventative meds (taken at the same time each day) have turned things around for me. I function pretty normally. I can exercise and eat and stand still as long as I'm hydrated.

I now take my full dose of ranitidine 300mg in the AM. It prevents me from sleeping. I take singulair in the AM for the same reason. I hope you are taking your atarax at night as that can make you sleepy although it really doesn't too much for me. I, too have breakthrough GERD in the afternoon. Rather than take a PPI, I take 2 chewable TUMS for calcium and to take the edge off the acid.

I'm sorry your docs don't understand mast cell disorders. They may have been the rage in the 90's, but treating mine in 2009 has restored my health :-)

[futurehope]

When my MCAD is out of control, I have what I call "low grade anaphylaxis". Anytime I stand still the blood pools in my feet and legs and they turn dark purple. My BP drops out and my HR is very fast. My throat and chest get tight intermittently throughout the day, I feel very lightheaded and I have a hard time thinking. I get hives off and on and I sometimes flush. When things are very bad, I have trouble eating. I am very nauseous.

ALL OF THAT IS IMPROVED ON H-1 and H-2 BLOCKERS. I probably still have POTS on meds, but just barely. When I'm very symptomatic, my HR goes up 60 BPM after a minute or so. Daily preventative meds (taken at the same time each day) have turned things around for me. I function pretty normally. I can exercise and eat and stand still as long as I'm hydrated.

I now take my full dose of ranitidine 300mg in the AM. It prevents me from sleeping. I take singulair in the AM for the same reason. I hope you are taking your atarax at night as that can make you sleepy although it really doesn't too much for me. I, too have breakthrough GERD in the afternoon. Rather than take a PPI, I take 2 chewable TUMS for calcium and to take the edge off the acid.

I'm sorry your docs don't understand mast cell disorders. They may have been the rage in the 90's, but treating mine in 2009 has restored my health :-)

Thank you so much again for your response. I certainly can relate to the blood pooling. I've only had 2 "episodes" that I remember during which I flushed, got severely woozy, nauseated, sweaty, unusually fatigued all at one time. Not fun. I have no idea what precipitated them and when I asked doctors, I got no response. I was convinced I was dying.

I, too, am thinking of switching the timing of when I take my raniditine. I currently take it before bed but am convinced it's causing ridiculous dreams. But it really helps the nighttime acid. You're lucky you do not need to take a PPI (like Nexium). I'm convinced it adversely affects my CNS. Maybe, if I'm lucky, I can control my GERD with a second dose of ranitidine in the AM. TUMS is ineffective for me.

Yes, the Atarax causes grogginess, but the stuff is like gold to me. It gave me my life back. I take the Atarax before bed. I can exercise, but still have more trouble sitting or standing still than I am comfortable with. My fatigue level is also very poor. I'm very glad to hear of your success. Do you live near Boston where your MCAD doctor practices?

Do you take 25 mg Atarax at night? Thanks for your time.

[juliegee]

Hi Futurehope-

I take my atarax right after dinner. It has a weird effect on me- kind of wires me up a little. If I take it too close to bedtime I have trouble falling asleep. Most folks get very sleepy with it, not sure why I don't. I'm so glad your treatment is helping with IC. I wish it had been available to me 20 years ago when I was suffering so much. My IC went into remission. I pray the same happens with yours.

Hugs-

Julie