Chicken And Egg

[firewatcher]

OK,

POTS is a constellation of symptoms, sometimes like with EDS, diabetes or chiari, it has a cause. Hyperadrenergic POTS is "genetic" whether we are born with it or predisposed to it is still at question. Those with MCAD AND POTS are (if I read the studies right,) ONLY the "hyperadrenergic" flavor, so does that mean that the MCAD is genetic too? Is the MCAD the "cause" of the POTS or are some H-POTS patients simply predisposed to having MCAD? You can have one without the other. MCAD and H-POTS are comorbid (occurring together) in only half the patients. Wouldn't H-POTS be primary, meaning there was no "cause?" Familial Dysautonomia is genetic and has no trigger.

Does POTS always have a trigger or underlying condition?

I am so tired of fighting with doctors and explaining and looking...

[flop]

Good question Firewatcher!

I suspect that as there is so much that we don't know about both conditions that there isn't a definite answer to your question.

If you only had orthostatic symptoms at the time that you had MCAD "allergic" reactions then it would be easy to say that the orthostatic/POTS symptoms were due to the surge of histamine in your system. However if you have POTS when you don't have allergy symptoms is that because of histamine or because of underlying POTS??????

Nothing is simple, I got POTS after a virus so I was told it was caused by the virus. Then I was diagnosed with EDS (which I was born with) and told my POTS was caused by EDS. All along I have been telling doctors that there is a link between my allergies and my POTS flares - now I am trying to get tested for MCAD. Do I have three "causes" for my POTS?????

A confused Flop!

[juliegee]

I'm equally confused here and I think there is no clear cut answer to your question. My POTS flares after trauma, car crash, surgeries, etc. My MCAD became apparent later in 2003, although I had symptoms throughout my life. Now, the genetecist says that I have an underlying connective tissue disease (as yet un-named!) contributing to my POTS.

For me, I suspect that I was born with a connective tissue disorder that causes my blood vessels to be "leaky" and fragile. (Two siblings have already had dissections/anuurysms) In anaphylaxis, blood vessels leak out causing shock. Any trauma or stress causes this to flare, worsening the POTS. My POTS is a symptom that indicates my MCAD is not well-controlled. I take an extra antihistamine or beathing treatment and I feel better. AND, my POTS imrpoves. When my MCAD is not flaring, my POTS is not as severe.

Very complicated. Some causal/comorbid relationships here- as with you, Jennifer. The trick is figuring out what causes what. What can be controlled, treated, or relieved and what we have to treat with lifestyle changes/choices.

Julie

[firewatcher]

I am wondering if POTS is a bit like diabetes, there's a type I and type II. Type I is "genetic" or autoimmune and Type II has the same physiological issues, but can be avoided and/or controlled through diet and exercise. Both do the same thing to the body, but one has an obvious trigger (obesity) and the other does not...yet. POTS is probably similar in that there are two main "types:" hyperadrenergic (type I) and neuropathic/viral onset (type II.) I know it's not this easy. Because there is no "avoidance" for the neuropathic/viral onset POTS, it just is supposed to be able to go into remission. I just don't know if in the H-POTS case there is a "cause" to find.?

[firewatcher]

I'm equally confused here and I think there is no clear cut answer to your question. My POTS flares after trauma, car crash, surgeries, etc. My MCAD became apparent later in 2003, although I had symptoms throughout my life. Now, the genetecist says that I have an underlying connective tissue disease (as yet un-named!) contributing to my POTS.

For me, I suspect that I was born with a connective tissue disorder that causes my blood vessels to be "leaky" and fragile. (Two siblings have already had dissections/anuurysms) In anaphylaxis, blood vessels leak out causing shock. Any trauma or stress causes this to flare, worsening the POTS. My POTS is a symptom that indicates my MCAD is not well-controlled. I take an extra antihistamine or beathing treatment and I feel better. AND, my POTS imrpoves. When my MCAD is not flaring, my POTS is not as severe.

Very complicated. Some causal/comorbid relationships here- as with you, Jennifer. The trick is figuring out what causes what. What can be controlled, treated, or relieved and what we have to treat with lifestyle changes/choices.

Julie

Julie, I am finding that as it is becoming more apparent that I do have more MCAD symptoms and they are being controlled, it is NOT doing anything to alleviate my POTS! Of course I get POTS flares with my mast cell activation, but better control over it has not stopped my more annoying POTS symptoms: headache and tremor. I keep thinking there is that "unknown endocrine" thingy as the third ingredient in the mix, but my doctors have stopped looking. I can't even get agreement on the endocrine issues I DO have! I guess I'll have to do what my OB/GYN has suggested: control the rest until something else goes so wonky they know what they are looking at (it just doesn't sound pleasant! )

[Csmith3]

For what it's worth, I am not persuaded by the current distinction between the two types of POTS.

I think POTS has always been there for me, probably due to EDS or similar connective tissue disorder. I think my symptoms really started to show towards the end of primary school because that is round about the age when I stopped running around so much with my friends playing games and more passive hobbies came in, i.e. it was deconditioning, particularly as I have difficulties in building muscle (and maybe this also has a knock on effect to the response of joint receptors?)

In terms of hyperadrenergic POTS, this came second and is only about 10% of the problem. Bizarrely, this type of POTS seems to wax and wane in me.

I think the potential for POTS is there in some people and then it's a case of whether anything sets it off. For me, the interesting thing is that some people get better. I have relatives with EDS who only suffered POTS symptoms for a few years (e.g. around the menopause).

In common with others here, I am finding that more and more health issues are coming to light as time goes on. Some of these are solveable and I am definitely in better health than I was, but nothing is really controlling POTS which seems to be how it all started. I wonder if the myriad of symptoms that POTS encompasses is in fact "true POTS" plus various other things that tend to go with it.

[icesktr189]

HI! i just wanted to put my two cents in!

My cardiologist said my POTS was due to my open spine. Its only opened on the inside, but he says it could be leaking spinal fluid. I also have a slight curvature. He says that i should have surgery to fix it but i only have a 40 percent chance that i will help with my POTS. im not sure if its worth it because i had my tonsils removed a couple months ago and my POTS got dramatically worse after it was done. Any help would be appreciated!

[anna]

Just to add more confusion!: I remember reading that mast cells are made of connective tissue and move throughout structures within the body that are made of connective tissue, so my guess would be that MCAD might have something to do with fauly connective tissue synthesis as seen in a number of HCTD, my thought is that only people with a spacific collegen mutation, might be prone to MCAD, that could explain why some people with EDS for example have MCAD symptoms and others don't.

I know that my families EDS has an odd mutation as our genetisit explained that our EDS is no doubt linked genetically to our hareditory essensial myoclonus as he called it 'a novo mutation' (well something like that)!!

Anna

[juliegee]

Just to add more confusion!: I remember reading that mast cells are made of connective tissue and move throughout structures within the body that are made of connective tissue, so my guess would be that MCAD might have something to do with fauly connective tissue synthesis as seen in a number of HCTD, my thought is that only people with a spacific collegen mutation, might be prone to MCAD, that could explain why some people with EDS for example have MCAD symptoms and others don't.

I know that my families EDS has an odd mutation as our genetisit explained that our EDS is no doubt linked genetically to our hareditory essensial myoclonus as he called it 'a novo mutation' (well something like that)!!

Anna

BINGO!!!! I've noticed the same thing. I looked up mast cell and the definition was a connective tissue cell. Coincidence? I think not. I've mentioned the idea that my MCAD may be connected to my HCTD to various physicians and so far, they just shrug. I see my geneticist again late this summer and I plan to really push the point. I've been tested for a bunch of mutations specific to EDS IV and I was OK. I'm waiting for results of 5 more mutations specific to Loeys-Dietz Syndrome. It's wonderful that you've been able to pinpoint your specific mutation, Anna. I hope it helps with identification and treatment, if not today hopefully some time in the not too distant future

Julie

[juliegee]

Julie, I am finding that as it is becoming more apparent that I do have more MCAD symptoms and they are being controlled, it is NOT doing anything to alleviate my POTS! Of course I get POTS flares with my mast cell activation, but better control over it has not stopped my more annoying POTS symptoms: headache and tremor. I keep thinking there is that "unknown endocrine" thingy as the third ingredient in the mix, but my doctors have stopped looking. I can't even get agreement on the endocrine issues I DO have! I guess I'll have to do what my OB/GYN has suggested: control the rest until something else goes so wonky they know what they are looking at (it just doesn't sound pleasant! )

Jennifer, I'm glad the H-1;s and H-2's are helping with MCAD symptoms. Out of curiousity, what do you consider MCAD symptoms? Headaches can be a symptom of MCAD, but a constant tremor is not. Many sufferers do shake during anaphylaxis- me included. You obviously have something else going on and I'm very sorry it's been so hard to figure out. I hope you can without too much suffering

If you do have MCAD, your POTS should improve considerably as that is effectively treated. For me (before treatment), I was constantly in a state I call "low grade anaphylaxis." My BP was very low, HR really fast- especially when I stood. My blood pooled to my feet and hands and they turned dark purple whenever I was upright. The allergic reaction was causing my blood vessels to leak out. My BP was low because my blood vlue was low and my heart worked overtime to try to correct the situation.

In addition to the meds you are taking, there are others called mast cell stabilizers to treat MCAD. Wonder if that'd offer you further help OR if your continued use of a BB is preventing your body from the full benefit of the MCAD meds. I understand that you are stuck and need the BB

I hope things get better and better for you. I love the way you think and connect the dots. We need that here!

Julie

[firewatcher]

Jennifer, I'm glad the H-1;s and H-2's are helping with MCAD symptoms. Out of curiousity, what do you consider MCAD symptoms?

Flushing is a big one for me, and then the "have to prod me with a sharp stick to get me to move" fatigue that follows. The inability to tolerate allergy shots: big hives and general stuffiness. Headache of course. Mucusy stools post episode (used to be diarrhea when it was really bad.) Tachycardia and shortness of breath. Post episode chills and lowered body temperature. (I wish I'd had my U-collection bucket yesterday, my Pilates instructor said she'd NEVER seen anyone flush as hard as I did!)

Headaches can be a symptom of MCAD, but a constant tremor is not. Many sufferers do shake during anaphylaxis- me included. You obviously have something else going on ---NO KIDDING ---and I'm very sorry it's been so hard to figure out. I hope you can without too much suffering

In addition to the meds you are taking, there are others called mast cell stabilizers to treat MCAD. Wonder if that'd offer you further help OR if your continued use of a BB is preventing your body from the full benefit of the MCAD meds. I understand that you are stuck and need the BB

My PCP started me on Zantac and Singulair which is allowing me to actually get the allergy shots without the previous reactions. Which is why I am suspecting MCAD more than ever.

I hope things get better and better for you. I love the way you think and connect the dots. We need that here!

OOOooooooh! I love coloring! I always used to draw the rest of the scene OUTSIDE the lines though. My husband says the ONLY time I'll be "inside the box" is when they bury me!

Julie

[iheartcats]

This is such an annoying issue because I've always had allergies and been on Claritin, Allegra, or Zyrtec for about 8 years. If one stops working well, I switch. I also take Nasacort for about 7 months of the year (end of March to end of October).

My POTS was diagnosed in January 08, and a couple months after that I started to get more hives. I've seen my allergist and it's not Mastocytosis (how do you spell this)? He did the main blood test for this just in case. He's not familiar with MCAD (I left him some paperwork and see him in April), but he did tell me to begin Zantac with my Zyrtec (which, actually, I will start this evening).

I've got hives occasionally in life, which people with bad allergies do, I guess...but mine are now random and after every shower and when I am hot or stressed. My allergist has seen these flare-ups come on out of nowhere for people, last up to a few years, and leave. That sounds very much like what POTS can do, no?

Now. I saw another one mention this...I also occasional get mucosy stools but told this can be IBS. Years ago I had IBS, then it improved. Now it's rare, but I still get these stools sometimes. That can be allergy related?

I've read on the board Grubb says controlling allergies is integral to POTS, so that's why I'll stick with my allergy meds. I also want to do shots (and my allergist is willing to do it even if I am on a Beta Blocker in the future). If we can get through the shots, he thinks it'll help me significantly. So I hope I can manage these.

I really hope there is a chance POTS + worsening allergy symptoms will improve. But I still think my POTS and allergies have somewhat of a relation.

Isn't it just horribly frustrating?

Has everyone done that urine sample thing? I have an appt. with my PCP next week and want to ask for the 'bucket' to save for a flare-up. What do I ask for, exactly, and will it tell us something (ie, if it's positive)?

[firewatcher]

Cat-Lady,

The stool thing is how I know if whatever my son has eaten was cross-contaminated, they will be very mucusy! The pediatrician says that it is a sign of "internal hives" and the intestines are trying to protect themselves like your nose does when you inhale an allergen. It can show up as diarrhea, but it can just be "snotty."

[iheartcats]

Cat-Lady,

The stool thing is how I know if whatever my son has eaten was cross-contaminated, they will be very mucusy! The pediatrician says that it is a sign of "internal hives" and the intestines are trying to protect themselves like your nose does when you inhale an allergen. It can show up as diarrhea, but it can just be "snotty."

Nice. So I get hives inside and out. Well, at least I know what that is now.