futurehope

This hematologist may or may not know about Mast Cell Activation Disorder. Just thought I'd warn you.

After I wake up in the morning, I feel like a dead person. Dead, dead, dead. My body definitely does not adjust to the change from being asleep to being awake. Of course, the longer I remain in bed, the worse I feel, so there is no way out of this despicable situation except to push myself and get moving.

If I did not push myself, I would eventually feel so sick from laying there, that I would wonder how come I'm still alive? IOW, How could I feel that bad and still live? But, I do. I may even look like death, but here I am typing this, so I've survived this daily torture another day. It's a nightmare that I've been living with now for at least ten years. Amazing isn't it, that you could look and feel so dead, and yet be alive!

Issie, I'm so with you on this. Maybe it's our MCAS? Anyhow, I frequently do not have the breath to sustain any note, much less a high note, especially when standing. I noticed this first in church. They usually have us standing when we sing.

So, depending on my mood, I'll remain seated if I really want to sing, or, my usual scenario is I lipsync only, no voice. It's a bummer.

ETA, don't try to engage me in a protracted discussion while I'm standing. I do not have the breath to speak.

Oh, and to add confusion to this symptom, I'm fine when exercising. I mean, I am able to exercise.

Sue1234, have you ever heard of a neuroendocrine tumor? I do not know too much about it, but they secrete hormones and cause all kinds of problems. There are a handful of doctors on the US who are specialists for NET. I learned a bit from reading the Mast Cell Forum that I frequent.

Truthfully, I have no idea at all, but I thought if I were you, I would look into neuroendocrine tumors.

Issie, I don't know if you are asking a question of me or not? I take my Hydroxyzine HCL at 8:30 PM and I tend to go to bed between 10:00 PM - 10:30 PM.

I can only take 1/2 of a zyrtec-like pill (xyzal) upon waking in the morning, or it is too much, too strong and I would feel weird, but I take 1/2 xyzal (generic) each morning.

Future, have you had a reaction to the Zantac in addition to the insomnia?

I react to red # 40 and yellow #5 and yellow #6, but am still trying to decide if I react to the zantac. Brand Name Zantac uses iron oxide dye, which is a natural dye and comes from the earth. I definitley react to several generic zantac products that incidentally have the Red #40 dyes made from petroleum.

Thanks,

Lyn

I usually stick with the name brand. With Zantac, it gives me insomnia. It is not worth it for me. I'm sticking with what works for me, and that is Tagamet.

As for the Hydroxyzine HCL, it definitely can make you more tired. I've been on it for years now. For me, it is a toss-up...should I endure bladder pain (I have IC), or the tiredness? I voted for tiredness. Bladder pain is debilitating.

I'm better with zantac over pepcid - but was better with tagament over either of these. But, due to the recent research about it not being good for histamine intolerance problems with DAO - had stopped the tagament - but, it didn't hurt my stomach. I would like to see how others are doing on their regimen and how it's affecting them.

Issie

FYI I take Tagamet. Zantac causes insomnia in me as does Pepcid. Besides, the Zantac uses red dye and the Tagamet does not, so Tagamet it is for me, unless Dr. Afrin convinces me otherwise.

Issie,

Boy, can I relate to you. I paid big bucks for the hair laser thing, sat under it three times/week for a year and noticed nothing. If this MCAS turns out to hold the key, maybe we will be able to grow our hair back? Wouldn't that be nice.

Sorry about hijacking the thread.

ACB,

I have the 2nd three month exercise program. Yikes! I don't know if I want to do it or if I even care. I would need to be a for-real athlete, and I am not sure my body can handle it.

About 15 years ago, I could walk at 3.5 MPH for a full hour, and then go back in to my desk at work. So, at one time in my life I could do it.

The difficulty with this program is getting and keeping the heart rate in the correct zone. When I used to walk, my heart rate had maxed out to what a fit person has, and I did not concern myself with increasing it to get aerobically fit. I would walk not concerning myself with heart rate.

So, I am not sure about the next three months. They look beyond what I need. I'll see.

Good luck with the possible MCAS and Dr.Afrin.

For anyone who has tried this program or who is interested.....

I have one more week to complete the 3 month program. I have been walking on a treadmill for the heart portion of the program: there is a weight portion of the program as well. I did not need to do sitting/rowing/biking ever because I had been exercising before I started this, so I guess walking was not one of my difficulties.

The beginning was tough, because my heartrate easily went up into the desired range with minimal exertion.

Now that I am more fit, it is getting much more difficult to get and keep my heartrate in the correct range (base pace or mean steady state). I have to really increase the incline and increase the speed of the walking. That is tough and tiring to have to do that, especially for extended periods of time.

Also, as I'm nearing completion of the program, I am expected to maintain these heartrates for longer periods of time. Today was 50 minutes at base pace. That was really tough. I can do 20 - 30 minutes easily enough. Anything over that length of time, it gets tough.

Overall, I'd say after pushing through the difficulties of longer periods of time and increasing my speed in order to get the heartrate up, I'm finding that in comparison, everyday life (normal activities), are a breeze.

I mean, in comparison to how difficult it is to have a high heartrate for 40 minutes to one hour, every day life is much easier. The exercising is not easy. It is tough. I get sweaty and tired. But normal life is easier.

Also, I still fatigue easily. I need rest more than a normal person. I also may have an MCAS (mast cell) issue going on. I'm in the middle of determining that. I still feel "potsy" when standing sometimes. I can tell by the feeling in my head that the blood is pooling.

So, I am going to summarize what I've always thought, and that is....I am not curing my underlying medical conditions by exercising, I'm just making everyday life a bit easier.

For all you other Dr. Levine people, did you continue pushing yourself to do more and more difficult stuff after the first three months? Thanks in advance.

You all got so much more information than I did. When I had my first visit, he spent most of the time trying to get me to recall all my difficulties. I forgot to mention several things I have had in the past. There are too many weird things and many I had forgotten.

Anyhow, once he was done asking questions, he ordered tests, and I won't be seeing him until July 9th - a long way off.

Thanks for sharing your info. I want to know as much as I can. It's difficult for me to sit and wait. My visit was on April 30th.

i should chime in here about reverse T3. The new integrative doctor is testing me for it. Has anyone been tested for it and treated as a result of abnormal results?

Yeah, it is very hard to do the treatment for it. You titrate T3 up and then back down over a period of weeks. One of the side effects of the treatment is tacky. It was very hard on me to do it and I never could get my body temp. up to normal. It really didn't make me feel any better - if anything worse because of the terrible high hr. It wasn't a sucess for me and I tried to do it two different times and never could get my levels up.

Issie

I had the same problem you describe. I had perpetually been low on my Free T3 test, though Free T4 and TSH were okay. After an unsuccessful attempt to try varying levels of timed-release Cytomel (T3) along with the Synthroid, I gave up. The additional T3 caused tachycardia and diarrhea. It did not improve me at all. My experiment last for many months with compounded timed-release pills. In any event, I guess some people feel it improved them. Not me.

My two cents from talking to Dr. Levine's nurse....

I'm not convinced that you have to be increasing your exertion to achieve success, i.e. by jogging for farther or for longer or by choosing a more strenuous activity. I'm under the impression that once you've graduated past the three month Levine exercise program, the key is to continue doing something.

The something is what you feel most comfortable doing and continuing to do. The key is, one may continue to see improvement past the three months. As a matter of fact, you may continue to see improvement as time goes on into nine months and beyond. But the impression I got from talking to the nurse is not that I must increase the strenuousness of the activity past the three months, but that I must continue something past the three months, because it might take different amounts of time exercising for someone to see results. IOW, it's the length of time one has been exercising that is the key to seeing improvement.

That's the impression I got anyway, as I did not hear the nurse say anything to me about increasing my exertion by jogging, or by jogging more miles, after the three months is up. Nobody is stopping me from doing that, but I did not think she said it was necessary. It was the continuation of an exercise routine that was necessary.

I was given a sample additional 3 month program (to be used after the initial three months), that I could follow. But she said that the choice of what I did was really up to me and my likes and dislikes.

Diagnosing MCAS:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/

I am on 50 mg of Hydroxyzine HCL for interstitial cystitis (and now possible MCAS). I need this medicine or my bad symptoms increase. It does contribute to restless leg syndrome, unfortunately. But, the sedating properties help me get to sleep at night, so I don't care.

Doozlygirl,

You sound like a physician. I guess my long wait to pursue this diagnosis was necessary, as physicians knew even less back in 2004 when I first started thinking about it. I even convinced myself to forget about looking into a mast cell disorder, figuring, there is no way.

Anyhow, proliferation is different than "mast cells behaving badly". I too must stay on my daily H1 H2 blockers, along with a PPI and Singulair. I am not cured as I still have not identified my triggers. But I am much better than I was back in 2001 when I first became very disabled. I now have a bit of a life, though I am not as improved as I want to be.

I'll let you all know what I find out about myself. Keep on keepin' on everyone. There are answers out there, maybe not a cure, but answers.

I posted this thread in case someone was interested. I did not want to tell people what to do, but I figured there would be someone who would be able to relate and who might be motivated to pursue MCAS if they knew that I pursued it and they knew my experiences.

My suggestion would be to go see the experts, the ones doing the research, and who are familiar with the latest findings. They are the most interested, and have a vested interest in helping you.

Folks, do not give up. I always perked up a bit when my various POTS savvy doctors would say, "you know how you POTS people are so sensitive to everything..." Oh really. We're all really sensitive to everything and to any changes. Well, I finally asked myself, "WHY?" There must be a reason.

And if the MCAS is secondary then that leaves us with a lot of questions. I can only go on what I have read and what I am told by the doctors. they say its rare and that when it occurs its in the hyperadrenergic form but with MCAS episodes that cause extreme low blood pressure.

I guess the evidence would be treatment success with H1 or H2 blockers or mast cell stabilisation. Would many here claim improvement?

I can only speak for myself. I need to be on my H1 and H2 blockers and singulair or I develop worse symptoms. The ingestion of the blockers does not "fix" the underlying genetic defect. It allows our body's to be calmed down from the chemicals released from degranulating mast cells.

I have so far been able to do Dr. Levine's exercise program, so I cannot complain.

I have a lot more researching to do to figure out my triggers, and I am not overly motivated:I need a break. But, for starters, I eat only organic food, if possible, and I stay away from more complicated foods that were manufactured with many different ingredients. Eating out is difficult for me as I can always expect to start having problems. I do not know my triggers, and who knows what they put in the food?

I drink water only. I do not ingest soda pop as the bubbles cause problems for me. Tea, coffee and alcohol are out.

P.S. It is true that many doctors do not understand MCAS or even know about it. They may know about full-blown mastocytosis, as the symptom of anaphylaxis cannot be ignored. So, just because researchers are not aware, this fact did not stop me from my pursuit. After all, Dr. Afrin and a few others are currently adding to the knowledge in this area. Bless their hearts.

naomi,

Serum Tryptase

Plasma Histamine - prechilled tube and send on ice

Plasma Prostaglandin D2 - prechilled tube and send on ice

Plasma Heprin Level - prechilled tube and send on ice

Chromogranin A

Urine for Prostaglandin D2 - 24 hr urine - send on ice

Urine for N Methyhistamine - 24 hr urine - send on ice

By posting this list I think you inadvertantly gave me an explanation for why I had to wait so long in the waiting room before getting my blood drawn. They were probably chilling the collection tubes. I also noticed them putting some tubes in special envelopes...keeping the samples chilled, maybe?

When someone who has seen Dr. Afrin gets a chance to post the blood work he does, could you please? I can't travel to S. Carolina anytime soon. Does he diagnose based on test results? I don't understand MCAS. It sounds like a severe allergy problem? But why would it cause one's heart to race from positional changes? Is standing up triggering a release of these chemicals? I understand the flushing and some other symptoms, but so many don't fit. Also, if it's a histamine release problem, it seems like one's symptoms would be episodic, not constant. I want to look at it a little more closely because I've suddenly been developing hives. It's been happening everyday, several times a day for months and I can't find a trigger. And when this all began one of the worst symptoms was a feeling like the back of my throat was swelling and I couldn't breathe. This calmed down though. Plus I have the alcohol intolerance and severe chemical and medication sensitivity. I think it's worth looking into.

I would be looking into mast cell disorders if I were you. I cannot drink alcohol. Sauerkraut, vinegar and fermented foods are out. Fruits make me my stomach get upset. I am sensitive to chemicals. Plus, of course, there are many other malfunctioning parts of my body. We're each different.

As for how Dr. Afrin diagnosis, I can tell you what I think. He listens intently and asks questions about your entire medical history. He scratches your back and looks to see what that does to you. He tests you. And I'm supposing he also takes into account whether adding H1 and H2 blockers to your daily regimen benefits you. I need several different histamine blockers a day.

Lindajoy,

I wanted to add that I'm just now in the middle of the Mast Cell diagnosis. You are all so lucky to have access to Dr. Afrin. I wish I was so lucky. I mentioned that a doctor here said don't worry about it even though my numbers are even past the abnormal level on a blood test. Anyhow, since it's taking me about 5 months for an appointment locally here, I have been reading about anti histamine diet. And wow, it's amazing what going off of those foods and taking a just a bit of claritin has done. At least for the flushing and orthorstatic intolerance. I was juicing in between meals and drinking over 2 cups of spinach a day. I love spinach. I found out it's the biggest histamine contributor. It was hard to go off the spinach. But I found other veges, but you should read the anti histamine diet that is on the internet. IT's the urticaria site that has a nice list. I can post that for you if you can't find it. But it has really helped. I didn't think it did at first, but it took several weeks to get it out of my system. Let me know if you have any questions. Boy you sparked quite a debate. haha. But it's all good for us to hear each other. So nice to be able to have a place to go to do that.

Maiysa

Yes, if it's good for you, I probably cannot eat it......LOL

The only difficulty I have with the histamine free diet is..

we do need the nourishment and nutrients from different foods, in order that our bodies get everything they need for optimal health. By restricting your diet, especially too much, you may be solving one problem, but you are creating nutritional deficiencies.

LindaJoy,

It did not take that long for me to get a new patient visit, maybe two months? As I have said numerous times, I do not have an MCAS diagnosis, but Dr. Afrin ran many tests. I feel comfortable (I prayed about this beforehand), that I am on the right course for me.

It is truly difficult to be unwell for so many years. I told Dr. Afrin that I had learned at an early age to keep quiet about my problems as no one would find anything wrong with me, and people would tend to think I was a hypochondriac.

It is not my place, or anyone else's place, on this forum to tell you what to do, whether you should see Dr. Afrin or not. It takes effort, time, money, patience, things only you know about. I do not feel comfortable telling people what to do with their time and money.

It is up to you. It took me a while, about 8 years, to really pursue this as I had myself convinced that I did not fit the description of a person with a mast cell disorder. I may find out I do not have it, but I will not be sorry for having myself evaluated by an expert. And that is the key. I will not be sorry for the time/money I put out for this visit.

God's blessings to you.

I'd like to add that if someone has episodes with mutiple symptoms (simultaneous or escalating symptoms) that includes flushing, hives, itching, GI issues such as "D" or vomiting, and low BP, then this satisfies the definition of anaphylaxis. Anaphylaxis = skin symptoms and one other organ, such as vomiting and/or breathing issues and/or low BP.

Other symptoms such as night sweats/hot flashes, swelling, congnitive difficulties/brain fog, easy bruising, sensitivity to smells, meds, foods etc, pain that moves around the body, GERD, and dozens of other symtoms have been attributed to mast cell mediator release.

As you can see, these symtoms fall outside of the classic POTS or other dysautonomia disorders definitions. I've been flushing and having anaphylaxis far longer than I've had orthostatic hypotension. I have "failed" conventional treatment protocols for orthostatic hypotention, and I have tried just about everything published.

I am thankful that this site, because that 's how I learned about mast cell disorders. Patients who have pursued a mast cell disorder had PM'd me to nudge me in this direction.

Congratulations futurehope on connecting some dots. I hope to connect some dots when I see Dr Afrin in 2 weeks.

Lyn

You've done a good service by typing up this post. Thank you much, and I hope someone benefits from your sharing.

Hey, Futurehope,

I didn't mean to take over your post. I'm sorry. Please keep us updated on what you find out. So many of us here have mast cell disease suspicions and could really benefit from what you find out.

Again, sorry.

Lindajoy

I really want to help people if I can. You all helped me throughout the years. No apology is needed.

well said futurehope and christy.

futurehope, do you ever get this burning feeling inside your body, and frequent diarrhea and urination after an attack? I also feel weird when this is happening, like i might pass out.

I have had two "attacks". There was no burning feeling involved, but diarrhea, extreme wooziness, extreme weakness, high blood pressure (told to me when I was in the ER), and obviously I felt that something was really wrong and that I was going to die or something. It's awful.

Honestly, though, if you go read on a mast cell forum, you will see that this disorder can present in various ways, because it has to do with by-products of mast cell degranulation.....the release of chemicals that should not be released if mast cells were behaving normally.

For years I ignored pursuing this diagnosis because I figured I never had an anaphylactic shock episode, so I did not have mastocytosis. Case closed. I never considered pursuing MCAS at all until I listed my symptoms for the people on the forum, and also for Dr. Afrin (bless his heart), and the consensus was it would be wise to rule it in or out. So, for years I had been at a stalemate. But......

logically speaking, it appeared to me that there had to be an underlying disorder causing a multitude of my symptoms. As Dr. Afrin told me when I just saw him, either I'm incredibly unlucky with all my health issues, or I am correct in my assumption of an underlying cause.

Praise God we have some doctors looking into all of this is all I can say.

Dr Afrin being the doctor that thinks everyone with POTS has MCAD? And he can diagnose over the internet? mmm interesting when ALL other researchers claim that MCA disorders are relatively rare.

Just because there are many aspects of POTS symptoms that cannot be explained by current etiological theories does not support the argument that mast cell disorder is the primary in all or even many patients.

It would be unfair to say that Dr. Afrin thinks all POTS patients have MCAS or that MC disorder is the primary explanation in many patients. I have multiple body systems affected, and a very long history of unexplained symptoms. There are certain markers that Dr. Afrin looks for and if he sees them, he suspects MCAS. I have not been given the diagnosis yet, so it is premature for me to say I have it.

The person who posted about Dr. Afrin suggesting an MCAS work-up for them may have other symptoms you are not aware of. I had listed all my various infirmities that I've had for years for Dr. Afrin, some of which you are not aware of because I have not listed them on my signature on this forum. So, the picture you may have of me is not the total picture. Enough said.

If this doctor aids me and others to improve their health, and he is using his abilities to research, I commend him.