Flare Of Symptoms

[Gemma]

Hello everyone. I wanted to ask if many of you have on and off flare of symptoms. For couple of month I was feeling like I am on a way to recovery. I still had symptoms, but they were not as severe as before. I was able to do so much more compared to before, like in one day I was able to clean, go shopping and walk with a dog. Before it was hard for me even to make breakfast for myself. My symptoms of dropping blood pressure and elevated HR were almost gone. It was much easier for me to stand in one place. I was feeling at 70-80% back to normal. Also, i have to mention I was not taking any meds.

Now this past week, my symptoms are back. I cant stand or sit for long and have to lay down to get a relieve. I am lightheaded again, feel pressure in head like not enough blood flow to my brain. Also, very severe fatigue is back. Basically I feel terrible if not worse then before. If someone experiences flares like this, can you please share your experience and why it happens. I am so scared that its going to get worse then even before again. Its even hard to keep my body upright. Also, I forgot to mention, right before I started feeling bad, I started taking nabumetone (like a strong dose of motrine), that I was given for chest pains which doctor said is inflammation and possible chostochondritis. Well, after I started the med, I started getting that fatigue feeling again and like it is very hard for me to stand. I though, ok so maybe it will only last a couple of days. Well its been more then a week and not going away at all, only worse. I dont know what to do. Could it be a flare, or am I getting worse after a good window.

Thanks all.

[Freaked]

I think most of us get random flares. I'm having one recently and I've been doing everything right, better than I was in fact. I feel like I may be fighting a chronic sinus/ear infection and that's my only theory. Might you have any kind of virus or infection? Have you changed what you're eating or your routine?

[Gemma]

I was taking nabumetone, its like a prescription Motrin that my rheumatologist prescribed for inflammation. I have been having chest pains for over 4 month which are triggered by different movement and she suspected chostochondritis, so prescribed NSAIDS. When i started them i was ok in the beginning, then noticed more fatigue, then lightheadedness, then hard to stand feeling. I told my husband something is going on, either its due to meds because I am very sensitive, or it is its just a flare.

So, getting flares like this is common? I thought someone on here wrote before that if we start to have windows when we feel normal and then flares, it means we are healing. Is this not true?

[corina]

I don't know, it may for some but it never was like that for me. Before being on the right combo of meds I was always the same. Only thing different was that I had flares of low heartrate. I think, we are all very different.

[EABarnard]

Hi Gemma

Sorry to hear you have had a bad flare up. This has happened to me and I cannot deny that it has been linked to me over doing it and not listening to my body. My flare ups have generally landed up with me hospitalized but the doctors can't tell me if there is anything else underlying it. Have you done more than you would usually do and were you starting to push yourself maybe?

I know it doesn't really help but just try and take it easy on yourself. It really upsets me if I go down hill after doing so much better but I guess we just have to take it a day at a time and listen to our bodies.

All the best and really hope you will be able to get back to your activities!

[looneymom]

It does sound like a flare. Maybe the new medication set this off. Sometimes medications will upset the electolite balances. You might want to alternate water and gatorade to see if this helps.

[Gemma]

Thanks all for reply. I was actually feeling really good for almost past 2 months. I dont know what happened and why i started feeling bad again. The only thing that changed was that i started taking NSAIDS for costochondritis. And also took Duflican for yeast infaction. I dont know if its from the meds. I just wanted to know if people here also experience flares like this.

[IceLizard]

Hello Gemma. This may just be coincidence, but people with mast cell activation syndrome are supposed to avoid NSAIDs because they can cause flares. If your dysautonomia is due to MCAS, that might be what is happening.

[Gemma]

Hi icelizard, i dont know what my dysautonomia is due. How to check for mast cell disease?

I saw people on here wrote something about taking H1 and H2 meds, what does it mean and what meds are those?

[IceLizard]

Checking for mast cell disease is tricky and sometimes people have all of the signs, but test normal on everything. I am about to investigate testing for myself because I have many of the signs and feel better on antihistamines.

H1 and H2 meds are medications that block the action of histamine on H1 and H2 receptors. According to Wikipedia, "Histamine, acting on H₁-receptors, produces itching, vasodilation, hypotension, flushing, headache, tachycardia, bronchoconstriction, increase in vascular permeability, potentiation of pain, and more." H2 receptors of histamine are found in the digestive tract.

You are probably already familiar with some H1 and H2 antihistamines because many are over the counter. I am on Zyrtec (H1) and Zantac (H2), which is a common first-line treatment for mast cell activation syndrome. Children's Benadryl can be used for flares (Children's because liquid is faster acting).

This website from Canada has useful information about symptoms and diagnosis, as well as triggers and treatment. http://www.mastocytosis.ca/signs.htm

Best wishes!

[castronovo112587]

_{i am extremely sensative to all medications, so if i have to take a med for somthing it always causes me to flare in symptoms and then i start to feel better when the medicine is completely out of my system. That, my time of the month and getting sick always make me flare.}

[Gemma]

Hi icelizard again. Thank you for info. I am also so sensitive to most meds and some supplements. I have something weird going on. My blood is showing gluten sensitivity, but endoscopy biopsy shows negative for celiac. Also, my ANA shows positive, but rhemotologist says no lupus. Also, my WBC counts ads always high, meaning some inflamation is going on and my sedementation rate was also elavated. My symltoms also include lightheadness, drops in BP and increase in HR, often palpitaions. Also, I have chronic dry cough for the past year. I have noticed that I cough more After I eat. Was tested for asthma and regular allergies, all negative. Also, when i take beta blocker i start caughing. Well anyways, so many weird things going on, but doctors dont know what it is.

A week ago, I took duflican and also started on NSADs for chest pains due to costochonditis, and boom very bad flare of symptoms. Last whole week I felt so lightheaded and fatigue. So yestarday i went to rite aid and got zyrtec and today i feel batter, not so much fatigue and also less drop in standing BP and less standing HR.

I did ask my allergy doctor about MCAS but he said that i dont have it becuase do not have any rashes or hives on my skin. But I read online that you are not supposed to definetly have it. My symptoms are not associated with skin issues, mine are more fatigue, lightheadness, dry cough (feeling like bronchos are spasming). I did have reactions to meds, and had couple where I had really bad palpitation, feeling like will faint, and got red spots all over my neck but went away after like 10 minutes.

Do you have any suggestiin which doctor I should see for this condition? I think my regular allergy doctor do not know how to proparly investigate this condition. He did run the tryptase test and thats it, and it showed negative so he said I dont have it.

Also, did anyone prescribe zantac and zyrtac for you, or you just trying it out yourself?

Thank you very much.

[IceLizard]

Hi Gemma,

I have found a list of doctors that specialize in treating these disorders. http://tmsforacure.org/physicians/mab_1.php

I am not sure whether I have it or not yet, so I am going to talk with my primary care doc before I see a specialist. I want to minimize the chances of travelling to see a specialist only to find that that's not the problem. While I am waiting I thought I would see whether Zyrtec and Zantac would help. I think it is really helping the brain fog and fatigue, but I may need to do an experiment where I go off of them and see what happens just to be sure.

I starting thinking about mast cell disorders as a possibility when I felt fabulous after a shot of steroids. I felt almost normal again.

With mast cell disorders, you are right, a person may or may not have skin involvement depending on what the mast cells are doing. Also, according to this website, negative tryptase results do not rule out a mast cell disorder. Here it lists the tests that are done to help diagnose: http://www.mastocytosis.ca/diagnosis.htm

BTW, beta blockers are another class of drug that can cause problems for people with mast cell disease.

More information (lots!) can be found here: http://stoppotsvirginia.blogspot.com/2012/07/find-your-pots-cause-wide-world-of-mast.html#.UxY1Vaplnx8

I hope you can find out what is wrong and get some treatment!

Hollin

[Gemma]

Thank you so much for the info. I started thinking about MCAS after i tried 2 different beta blockers and got really bad cough from them, almost like asthma attack. Then i was put on NSAIDS and again flare. Also another flare with yeast infection medicine. I have never reacted like this to meds before.

I think if i mention it to my primary he will again say that i dont have it, like he says to everything. Lately i just go to specialists and not really discuss it with my primary because he just wants me to treat symptoms and stop looking for couse. And i am honestly done with unneeded med intake which were only making me worse.

[Gemma]

May I ask how you were able to see participating physicians on the website you mentioned about. I cant find it there. Thanks.

[IceLizard]

Hi Gemma,

The website has a list of doctors on the medical advisory board and they are all mast cell specialists. The link "medical research centers" also lists places that deal with mast cell diseases. Another doctor people have mentioned is Dr. Anne Maitland.

I had a disappointing visit with my GP today. I talked about trying to find the cause of the dysautonomia and he basically said "There is no cause, it just is an abnormal response." Not kidding. Then we talked about mast cell involvement and he said it was useless to investigate further because the treatment is just over the counter Zyrtec (as you know there is more to it than that).

I am not sure what to do next, because I need a referral to a doctor who knows about the connection between dysautonomia, connective tissue disorders, and mast cell activation, but my doctor is not really taking it seriously.

I don't know what to do but I know I don't want to be disabled all my life!

[castronovo112587]

I'm with you Gemma I am starting to look into MCAD as the beta blocker had the same effect on me and I suddenly cannot tolerate ANY medicine and I was never that way before. The only medicine I had issues with would be codeine and morphine, I had anaphylactic responses to those. I hope we can both get answers on this. It seems that mcad is extremely hard to diagnose! I hope you have been feeling better the last couple of days.

[Gemma]

Yes, I did read that its so hard to diagnose it. I don't even want to tell my primary about it, because he will look at me like I am crazy. Last time he said I have to stop going to doctors and waist my time and money. I wish sometimes that they live our lives for a week at least and see how they can just sit home and not do anything to help find the cause of illness. I do not want go give up and be disabled forever. My whole life was put on hold because of it. I can not go back to my graduate school, I can not start having kids. All I do is sit home, and then he tells me to stop looking for an answer. That is so unfair of doctors to treat us this way.

I called my neurologist that takes care of my POTS case and left message with his assistant to see if he can refer me to someone who knows about POTS. Doctors that don't have much experience with POTS dont believe that we actually feel the way we feel.

[castronovo112587]

I'm with you my PCP as an excellent Dr as far as getting you in right a way and doing the proper tests and referring you to someone but doesn't seem to buy into the whole pots/autonomic dysfunction thing. He seems knowledgeable but doesn't seem to put too much concern into it. Hopefully you can get referred to someone who can help you. I need to see my allergist again I guess he would be who I should start with.

[little_blue_jay]

Hello Gemma, I'm new to this board (just got approved today YAY!) and went searching for "POTS that comes and goes" and found your thread, yes this is me. Figures the day I get approved to a POTS board is when I am actually having a good day, but it's not always this way, I had a bad flareup several weeks ago, it was several weeks in the making so to speak, call me crazy but it seems like I overdid it one day by going for a long walk and I was fine, but within 2 weeks I was prostrate on the couch, could not do anything, and now it seems to be going away a bit. But I feel like I'm "on the verge" so to speak, as though if I make one wrong move and overdo things again I'll set myself up for another flareup, even just coming up the stairs from doing laundry I have to move slowly or my heart races again, but nowhere near as bad as when I was super sick last month.

Now I"m reading about this mast cell disorder, is anyone here in Canada and been able to see a specialist for it? What type of specialist would you need to see? Cardiologist? Endocrinologist?

[Gemma]

Hi little. Welcome to the forum. I am not sure about Canada. But there are some docs in US that deal MCAS. Ice lizard posted a few sites on first page of this topic that has list of doctors. I noticed that docs that deal of mcas are mostly immunologists, or hematologists.

[Gemma]

I just went to a big clinic here in us and was told by the doctor that i probably do not have any dysautonomia at all, and that my problem probably lays somewhere else, like endocrinology, or mcas. So, now i guess i have to look more into that.