Worst Day Ever

[andybonse]

Hi all,

I went to London to see Professor Mathias and had to use a wheel chair when we got there as I had tachycardia and chest pain and was triggered by the heat. ughh.

So diagnosis?

POTS

Possible ehlers danlos type 3 which surprised me

Mast cell

I found out why I may get chest pain here:

http://mastcelldisorders.wallack.us/yabb/YaBB.pl?action=print;num=1309115504

I need to go back for testing.

[Guest Hanice]

Well thats horrible about the chest pain, but great that you got the answers you have been waiting for so long for! You are lucky to have found such great doctors that help you! How are you feeling now Andy? :-( I hope your all better and cool. Make sure you stay hydrated, its so hot outside you can fry an egg on the ground.

[andybonse]

I'm home now, when we got there my heart was going so fast and beating VERY hard, the angina came on and I was terrified. Ive always walked everywhere, we had to get wheel chair from train station to hospital and back was crazy. We got to the docs office and he had amazing aircon, I cooled down and my heart came back down phew.

I think this might of been a mast cell attack since he thinks i have it and heat triggered it.

I am now home, very tired and exhausted.

Next time we go we are going to use wheel chair all the way to ensure that doesnt happen again.

Was a very strange feeling, everyone staring in at me in the wheelchair lol, you dont realise how other people see the world.

I am taking OTC H1 and H2 histamine blockers to try keep mast cell symptoms at bay until I see a specialist.

[Guest Hanice]

That must have been so very scary! Im glad you're better now though!

[andybonse]

Thanks! .

It's funny as all docs and cardiologists tell me its not angina and its not my heart. I know full well, its some sort of cardiac pain, now I find out I most likely have mast cell disease it makes absoulte sense its my heart just no one is educated in the medical field to realise it!!

We have to find the most specialist doctors with this crap!

The neuro today said im 22 and shouldnt have to be dealing with this at such a young age and hopes to get me treated and better!

[Guest Alex]

Sorry you had a rough day Andy.

Hopefully this new neurologist you're seeing will be able to connect the dots in your case and help you get some answers.

More testing may not be fun, but it could really help your dr figure out the best treatment course for you.

Also, if you search the forum you'll find a lot of good conversations and links about mast cell disorders and their connections with POTS.

Hang in there and keep us posted.

Alex

[andybonse]

Thanks,

The Neuro said he does not think I have neuropathy, so thats good I guess.

I will keep all progress on here .

[Christy_D]

Sorry you had a terrible day. My 18 year old son has POTS and MCAS. Heat is what triggers him to have chest pain, he hasn't had it in a long time since he rarely goes anywhere. On vacation a couple of summers ago, we were on vacation walking on the beach and he got the most excruciating chest pain he had in his entire life. An urgent care doctor gave him a shot of prednisone and that calmed it down pretty quickly.

[davecom]

Andy, I'm sorry about the unfortunate day. But on the bright side, you did get some possibly valuable information and a way forward. From what I have read mast cell disorders are quite uncomfortable, but there are a lot of treatments to try. With how hard you have pursued the disease so far before even knowing the sub-type, I am confident you will get better.

[andybonse]

@ChristyD, when he has the chest pain does he have a very fast heart rate and his heart beating hard? Mine does its horrible, when I sit down it slows a bit and the pain goes and I have to wait it out. I've just started taking cetirizine and ranitidine, what does your son take?

@Davecom, thanks. I am sure with correct treatments I can get a lot more 'normal', especially with midodrine which I will probably be getting after my autonomic testing.

I cant believe I may have Ethlers Danlos type 3, Im hardly bendy, but can put my arms behind my back and do the reverse prayer lol. No one in my family has any of this, weird.

[looneymom]

I'm glad that you are feeling better today. Sounds like you got some answers. Like the doctor, I thought it was kinda of strange that you still had the POTS still going on. Most teenagers outgrow this stuff but if something underlying is the cause, you are getting closer to an answer. This just reconfirms my opinion about the severe symptoms my son is having. Stay tough Andy and make your doctors find your cause for POTS. MCAS does not help with POTS at all. Keep us posted and thanks for posting the article.

Rachel

[Christy_D]

Andy,

My son takes Zyrtec-(10mg 2x day) and Zantac(150mg 2x day). Also, when he was first diagnosed with POTS, the first medication he was prescribed (after fludrocortisone) was Doxepin. It is prescribed by doctors for MCAS as well, since it has anti-histamine in it. The dose he takes is much higher than most people take. He is currently on 100 mg, but at one point was up to 175 mg.(enough to take down an elephant one doctor quipped.) He did really well on it for a brief period and it still has some effect on him since we have taken him off of it twice he did much worse without it.

My son is one of those that can't feel when he is having tachycardia. On a blood pressure cuff, we have caught his hr at 180 and he couldn't tell. But when the pain comes with it, yes he can feel his heart beating. He also experiences upper back pain at the same time.

[andybonse]

Thanks guys,

@christyd - I am taking 10mg zyrtec and 150mg twice a day, I am not taking zyrtec twice a day as i am self treating until I get to see the specialist. I get the pain in my arm and back also, its angina really. How is your son on treatment?

What is his life like, as hes near my age Its so hard for me as my friends go out drinking etc meeting girls, how will i ever meet anyone! forever alone lol.

[Christy_D]

He has basically lost all of his friends, he had to stop going to school in the middle of 8th grade and he just graduated high school in May. He has been homebound for most of that time. He went from playing select soccer and baseball year round and being physically fit to not being able to leave the house. Boys don't have the maternal instinct and don't want to just come over and sit around to keep you company. His main debilitating symptom has been nausea, which since starting clonazepam in June has been greatly diminished(still there but more functional). Now we just have to get him going again and find some social things for him to do. He needs to find a place to make new friends since his are gone or off to college. His outlet for socializing right now is on line games. Dr Afrin (mast cell specialist) said mast cell patients live a life of misery until they are correctly diagnosed and find a treatment plan that helps them. That was hitting the nail on the head.

[andybonse]

I feel for you!

My worse symptoms is my POTS and hate the heat,

I believe once my treatment starts for pots and mast cell properly I will be able to do a lot more. All my friends are asking me to go out all the time and dont understand im ill.

My brothers think its in my head all the time, I just give up trying to convince them, my brothers also mark easy on skin and get chest rash when its cold so I suspect they have it too!

Since im on zyrtec and zantac already, I wonder if they will add anything else, just a little scared if I have to have bone marrow test, Ive heard it really hurts..though im good with pain and suffering anyways.

[imre]

What type of doc, or test do you need for an mcas diagnosis?

[issie]

I've had POTS, MCAS and EDS for most of my life. My first remembrance was when I was 8 years old after a vaccine. With my family there is a genetic component as my sister has OI and CFS and all three of her kids either have POTS or OI. One of her boys (age 13) was just DX'd with POTS, MCAS and EDS. He is also a fainter. We suspected it years ago - but, now it's official. The other boy has some sort of dysautonomia - yet not as severe and her girl is DX'd with POTS and EDS. I've lived a long, happy and fulfilling life. I've done lots and traveled a lot. You can have a life with this and having a positive attitude goes a long way. You have to learn to pace yourself. I never would allow it to stop me from what I wanted to do. I refused to give into it. Try to stay as active as possible and keep your muscle mass up. Support your collagen with supplements that improve that and since those of us with EDS get osteoarthritis at a young age - support yourself with whatever things you can do to stop inflammation so that you will be in less pain as you age.

I believe that this is genetic first and something triggers it. Then there is autoimmune and inflammation. Working on those two things helps a whole lot. I wish I had been your age when I discovered how to address these things - as it might would have been easier for me. But, since you're young - listen to us older ones and support yourself NOW. There are things that you can do. What I'm doing is making a HUGE difference. Don't let this stop you from living your life the way you want to.

Yes, the heart tachy is horrible and MCAS and POTS and EDS seems to be the type that has some of the most intense symptoms. But, you at least know what is causing it and now you can start to learn how to manage it. There's lots of discussion on the site about all these things - do a search and you can see that you're not alone with this.

Issie

[issie]

What type of doc, or test do you need for an mcas diagnosis?

Most of us have seen an immunologist.

I use, Allegra (causes less brain fog), Zantac and GastroCrom, Quercetin, Turmeric.

Issie

[Christy_D]

My son was diagnosed via blood test, urine test, no bone marrow test. His heparin levels were 8.5 times to high(highest the doctor had ever seen) and his PGD2 were 2.5 times to high. His histamines level was the highest of normal, but he was also taking doxepin at the time which has anti histamine in it, so I'm sure that sku'd the test.

His doctor is a hematologist/oncologist.

[andybonse]

Ah that might be all I need hopefully .