Notgivinup

Maybe someone smart can explain this:

Heart rate and blood pressure both exhibit a strong circadian pattern with values for blood pressure, heart rate, and rate ? double product typically peaking in the early morning period.[11,12] In most hypertensive patients, there is a rather marked rise in blood pressure upon awakening that is called the morning or "a.m." surge.[12,13] Systolic blood pressure rises approximately 3 mm Hg/hour for the first 4-6 hours post-awakening, while the rate of rise of diastolic blood pressure is approximately 2 mm Hg/hour.[14] In most patients with essential hypertension, the blood pressure generally declines from mid-afternoon on (especially if an individual is employed outside of their home) and reaches its nadir between midnight and 3:00 a.m. This 24-hour cycle of blood pressure then repeats itself and is typically quite reproducible in an individual as long as activity levels are similar for the 24-hour time intervals being compared.[15]

This abstract goes on to say that norepinephrine is also highest in the morning. So does any of this mean anything to those of us who have been told we have the hyperadrenergic form of POTS?

Just thinking out loud here. I do notice like a lot of people here I feel better at night.

Crap, I put my response inside your quote. Sorry, see how much worse my brain fog is.

It did make me somewhat dizzy, which I am usually not, and definitely more lightheaded than I usually am. It seemed to give me anxiety, and that's what made me check my b/p. I was not nervous about it at all, I was engrossed in a tv show when it started making my heart beat faster and harder. I don't think I had worse brain fog, but it made me more anxious.

I am so confused as clonodine is suppose to block norephinephrine. Which I would think would slow your heart rate down. GRRRR this is all so confusing.

Sorry it isn't working for you so far.

If you can afford it, I say GO for it. More time to enjoy things when you can. So a great big YES from me.

I would do it, but we are already a little in debt, with me unable to work like I use to.

notgivingup,

If I was magical, I'd take all your pain away but I'm not. Let it all out here and know we are all here for you always!

This quote comes to mind as I think of that little one beside you and although these days are hard, one day you'll look

back and cherish these days with your little one, as I was sick with the 3 of mine. My mom told me that those were the best days of my

life. She was right...

"Be not simply good; be good for something."

Henry David Thoreau~

I hope you feel better soon~

xxx's

bellamia~

Thank You Bella, your quote is beautiful.

I also wish you were magical. Then you could heal yourself too.

Certainly hang in there. We're here for you on the forum, always. Also be sure to do your best to seek support from family, religious and/or professional sources as dealing with any chronic illness is inherently challenging... especially the sort that seems to tease and torture us with variability like this. Losing a good spell is so frustrating, feels worse than not having had it to begin with, but one thing that it reminds me of is that my body still has the underlying capability of running reasonably well. This is a "mixed blessing" since it's so emotionally tough, but in the big picture it is still a good sign that you had a good streak.

There is literally nothing in the body that stays the same over time. Homeostasis even in the healthiest person just means things are varying within decent margins of functionality. The body adapts to things, especially meds. I think you should still pursue things such as MCAD diagnostically if you can if it matches symptoms pretty well. A specialist might have some tricks beyond basic anti-histamines... for example, certain tricyclics will hit stuff like seratonin and sometimes balance autonomic response while also being H1 and/or H2 blockers... or various other things. There might be other possibilities out there, or perhaps things similar to MCAD. Or the anti-histamines could have been having a regulatory side effect that provides a hint to another underlying problem... pushing on one spot always induces counteracting responses or side impacts... I'm sure there are still other things to try.

Erik, I appreciate everyone's kind words of encouragement so much, but today your words seemed to resonate with me the most.

especially the sort that seems to tease and torture us with variability like this

Having a good spell/remission, is a double edged sword. I foolishly allowed myself to have thoughts of the future. A non-sick future, where I could do things with my child, and not just tolerate and barely get thru, but actually enjoy them.

I really like your thoughts on why the anti-histamines may have been working for me. And you're right, this illness does toughen you up. **long sigh**

Does the hyperandrogenic (spelled wrong) form of POTS mean blood vessels are too constricted?

Thanks

I know you all understand. It's just that I had so much hope that this was IT, the underlying cause of my POTS. I feel crushed.

I can't give up, my personality is one that just won't let me, I'll quit reading for a day or two at the most, then I'm right back at it. Researching stuff that I barely understand. I just can't stop myself.

I very much appreciate this forum. Thank you all for being here, and for all your words of encouragement.

Hi guys,

I always feel a little sheepish posting whines on here, since I'm so much better off than so many of you. But I'm annoyed!

I don't know what happened, but I feel like I did the last time I tried to get off Paxil -- except I'm still taking it! It's almost like the Paxil was controlling my autonomic issues, but all of a sudden, it's not.

I do NOT want to increase my dose. I'd love to not take it if I found something else that worked. Let's just say that some of the side effects are not pleasant.

Complicating matters is that I don't have a doctor right now.

The worst of my increased symptoms right now is severe diarrhea. I do have an appointment with the head of the inflammatory bowel center at Georgetown next month. I'm hoping that doctor can point me in the direction of someone who has a clue about the autonomic nervous system.

Sorry to gripe. It's just so frustrating! Paxil was my wonder drug, and now, it's just not cutting it!

Disgruntled Mrs. Burschman

Sorry you are feeling bad again. I am too after a couple weeks of almost normal. GRRRRR.

How long have you been on Paxil.All antidepressants do tend to poop out.

Do you know what kind of POTS you have?

I would like some therapy sessions in this spa. Notgivinup, is starting to give up.

I would also like a very long gentle massage. It's the only way I feel relaxed.

I JUST DON'T UNDERSTAND. I've been doing the MCAD antihistamine protocol. It worked for about 2 weeks. I hate this disease/syndrome!!! I 've done everything exactly the same. All my POTS symptoms are back.

I want to scream/cry/jump out the window. Why why why?

Maybe I don't have MCAD. Perhaps I never did. Probably just a fluke that the stuff worked.

I'm beginning to see a pattern with me. Everything new I try works for a couple weeks. Then quits. I'm calling Bev tomorrow. I'm asking for clonadine. Haven't tried that yet.

On top of the flu like symptoms, My whole body feels stiff and aches. Esp. The coat hanger area. I've even added a reg aspirin a day. Now I'm back to needing muscle relaxers.

This disease doesn't kill you. It just kills your spirit, and makes you wish to die.

Sorry about the rant. I am sick, and I am discouraged once again. my 4.5 year old is on the bed with me. I just want to sleep...........forever.

Zyrtec made me really tired. I was not sleepy. Yes, they can make you feel that way. Atarax makes me feel that way too, but I have to take them or my bladder acts up.

Thanks Futurehope, That's how I feel extremely tired, but not so much sleepy. I'm trying 5mg. today.

Just noticed this "novel insight" about mast cell activation:

http://content.karger.com/produktedb/produ...;file=000144042

* Symptoms from mast cell degranulation may be accompanied exclusively by excessive release of prostaglandin D2, but not histamine, in some patients with mast cell activation disorder.

* Aspirin therapy is successful at preventing symptoms in these patients, whereas treatment with only antihistamines is generally ineffective.

I guess this means there can be alternative explanation (and treatment) for some who have clear signs of MCAD/S but don't respond to H-blockers. Prior to reading this, I had only hear blame laid on histamines. Just another twist!

Wow, very interesting Eric. Bev at Dr. Grubb's office also told me to take an aspirin a day. Thanks or the info.

LOL AF is Aunt Flow (aka your period).

I've been taking the same amount of zyrtec all along. I added the zantac because I thought I needed an H2 as well.

I do have problems with eating. Feeling full too fast. Zantac seemed to help.

I tried going to that Masto site, kinda hard to navigate. I will try again.

Maybe I need less zyrtec. I don't know just trying to tweak meds. I do not, nor have I ever had any regular allergies. Only once when I was a kid I had a reaction to a bee sting,(hives, throat swelling).

The last time I had hives was about 3 years ago for about 5 nights, took benadryl & they went away. We don't know IF I really have MCAD, but since the zyrtec cleared up almost all my POTS symptoms, I am treating myself as though I do have it.

When I see Dr. Grubb's in Feb. I'm sure I'll get a more definitive DX.

Thanks

Hope it went well for you!

OK, I've been taking 10mg. zyrtec. Once in AM, the other before bed. It's been about 10 days or maybe a little more. (brain fog-bad memory).

Anyway, I've had good results until AF came to visit. But still felt better than last month. My problem now is it seems to be causing extreme tiredness, the last two days I've been exausted, like I've taken benadryl. I've also added one 150mg. zantac.

Could the zyrtec finally be catching up to me and causing this exhaustion? It says non-drowsy, and prior to these last couple of days I didn't notice any tiredness.

Doc gave me a script for singulair, but I haven't picked it up yet since the zyrtec was working fine.

Thanks for all your knowledge!

I understand soooo much how you're feeling. I've felt like my 4.5 year old would be better off with a "normal" mother too.

But your kids love YOU. They know you are sick. It might not seem like it, but they understand more than they show. I know you feel guilty. Guilt is one of my biggest things, I need to work on. I'm learning.

Like I said in a previous post. This illness IS NOT YOUR FAULT. You didn't ask for it. You are doing the best you can.

To know that you love them is all they really need. The rest is extra. The more you stress about stuff, the worse your condition will get.

Things will improve. They did for me, it took a long time. Almost three years of my only childs life! I'm too old to have anymore. I felt sad for me, I felt sad for him. But in the end again all they really need is to know you love them.

You will get better, just keep trying. Don't give up. And esp don't STRESS.

I'm glad your visit was so beneficial! I have MCAD and I also take zyrtec, singulair, and aspirin daily (among other meds) & have had really good results. I also take ranitidine/zantac- I'm sort of surprised she didn't add that if you're not already taking it. It's an H-2 and the combo of the H-1 and H-2 is what seems to calm down those mast cells.

The worsening of symptoms during your period doesn't mean that the zyrtec isn't working.....It is very normal to have a severe worsening of symptoms during menses with MCAD. Really bad periods have almost driven me to anaphylaxis. Note this pattern and consider asking if you could add a stronger H-1 in the evenings during that time of the month, like atarax.

Check out The Mastocytosis Society Website for more info:

www.tmsforacure.org

Oh, one more thng. I hope you're adding your new meds one at a time with at least a week between so you can measure their effectiveness. With your hormones affecting your symptoms so dramatically, it's kind of like shooting at a moving target but slow addition helps YOU monitor effects, good and bad.

All the best-

Julie

Thanks for all the info!! Yes my periods are horrid! I didn't know if I should take extra zyrtec. I did add a zantac today, and I think it helped.

I saw Bev. She was great!

How did they determine that you were hyperadrenergic? And what medications did she recommend? I'd like to know!

I'm glad your visit went well.

Amy

She looked at my extensive blood work. my norephinephrine was 987 standing. She said the work on this sub-type of POTS is in it's infancy, but was sure this was the type of POTS I had.

We talked about clonidine, but she didn't prescribe it (yet). I'm still testing out the theory of MCAD. She did prescribe singulair, and provigil for the brain fog.

I had been feeling good on zyrtec untill my period hit, then some symptoms returned. After this cycle is over I should know more about what is doing what. She also told me to add one aspirin a day.

I am on a small dose of cymbalta. She said I could up it to 60mg. a day. That it would down regulate the receptors, and I would not get surges of adrenaline. I'm a little foggy on that one. But that's about it so far.

Today I still have period cramps, and am not feeling great, but am looking forward to the next few days to see how I feel again.

Any more questions feel free to ask.

OK, i am very tired tonight, as I do not sleep well in hotel rooms. I will give a quick update, but more details tomorrow.

Bev was great! spent almost two hours with me. I did a lot of the research myself and was very knowledgeable about what I thought was going on with me. (Almost 3 years of reading).

Turns out I was pretty much right. We're not positive about MCAD, but she is treating me empirically. I do have the hyperandrogenic (sp? is wrong I know).

A few new meds were talked about. again I will give more detail tomorrow, if you all want.

But all in all my experience with her was great. she was caring, and up on everything. I know she's not Dr. Grubbs, and for more complex cases, he may be able to sort things out better. But once you see her, the wait for him is 4 months. I have an appt. in Feb to go back.

So anyone not getting the right help......GO as fast as you can. They are the best!

Maybe there's a secret magic ingredient in Zyrtec...

Ya, I wish.

Today was the second day of my period, and although I didn't feel like death warmed over (like last month), I did feel somewhat POTSY. Now keep in mind I didn't sleep well last night, and I had to take my mother to 3 different stores today. She is legally blind and I have to read everything for her.

So.......stress+ period+ little sleep + store hopping = not so great of a day. But still tons better than last month this time. I was in bed for 4 days.

I didn't know if I should of taken more zyrtec, but perhaps I should of tried. Oh well today is over for me. We are leaving for Toledo tomorrow. I'll tell you all about it when we return!

Man, it would be awesome if you could stay feeling well by simply taking Zyrtec! Let's hope it keeps up. I'm glad you're doing so well!

Thanks! The one I'm happiest for is my almost 5 year old. He gets to have his mommy back. For however long it lasts.

gomindy21, I'm so sorry, you have so many symptoms. I thought I had a lot. I mostly ALWAYS felt like I had the flu 24/7. Plus terrible cognitive problems. Like some days I couldn't even remember my phone number. And the relentless dizziness and pure exaustion. I would absolutely dread getting out of bed in the morn. and a lot of days I wouldn't.

Your symptoms seem a lot different to me than most. But of course I haven't read everyones stories. I really hope Dr. Grubbs office can help you sort it out.

I'll be keeping you in my thoughts.

I just checked, it's been 5 days in a row.