iheartcats

I have left a couple messages with the EP I see (nurse) and have not heard back yet about getting this test. I'll try again next week, so I appreciate all your input.

I do have the jittery, can't sleep yet exhausted stuff.

StacyRN: I also go to Stanford for specific POTS stuff like this so let's hope they get back to me!

Sending you good vibes. I'm so sad it had to come to such a severe set of symptoms to get the attention you deserve medically, but understand how that goes.

*hugs*

I am waiting on my new set of blood tests - so I will let everyone know around the end of next week what I (hopefully) find out. I just want to know what's going on, but don't we all!

I'm waiting with you! My previous ANA over a year ago that was positive...could be Lupus but we'd 'have to wait and watch.'

Today? I had nine vials of blood taken at once. The lab had no juice (I'd forgot mine in the AM rush). Nice. For more Rheum testing so I shall let you all know what that leads to. So far it's just been a day long headache and increased dizziness. I hate having that much blood drawn in one sitting.

It's so frustrating, though, to keep getting quite positive ANAs but nothing can be done. I don't want organ damage!

Thank you. I have a call into my doctor about this so I hope she'll agree. I'd at least like to know!

I take Propranonal 3 times a day now (20mg). It seems to help quite a bit. I hate extended-release meds, in general. I just don't think they work for me!

I have a gut feeling I should get this as I've now had a cousin DX'd with POTS and my sister has symptoms. I have a lot of the 'symptoms' that fit the changes in these levels and I want to build a case for my doctor.

What is in involved in the testing - like how difficult? How long? Is it expensive?

Thanks so much!

I had an EP diagnose me, but since she specializes in POTS he wanted me to follow-up with her to see if we are on the right track.

She did not do a tilt table as my HR went up more than 30 standing from sitting for my EP before Beta Blockers. She may do it on others who have not been fully diagnoses before seeing her, I'm not sure. You can ask the office if you call.

But she's very good and at least was able to confirm what I'm doing for POTS is accurate and what I can consider to help myself improve.

I was diagnosed in January 2008...I'm better now than I was then and medications have really helped.

I need to get more active now and try to start exercising and building lost muscle. I think that is going to help me, at least that is what I tell myself!

I have a long way to go (I'd love to be off medications and feeling 90% of my old self without them) but I'm not there yet. But I hope I do get there!

Dr. Friday at Stanford - she's a POTS specialist. I saw her recently. She is very good about sending information to your PCP on what you can try for treatment and suggests follow-ups with other Doctors.

She has about a 3-month wait to see her, but they are pretty good about setting up appointments. If you need more info, PM me!

You may or may not be allergic to MSG, it is a neurotransmitter labeled as a food additive. So you may have just changed the balance in your body just enough to release all that histamine. I find that the liquid benadryl is better absorbed and faster, my allergist recommends every 4 hours when my son has an allergic reaction. Hives are not fun! If you ever get the craving again, cook just the Ramen noodles and add your own seasoning and broth...I never use the packet part. If you start to read labels, you'll find that MSG is in a LOT of things! Good luck! and try not to scratch!

So I guess I may have reached my tipping point - I read about MSG last night and that stuff isn't friendly. I wish it were labeled like an allergen (clearly) on food.

My hives are mostly gone this morning, thank goodness. I'm hoping to avoid Benadryl today because I was so tired from it yesterday. I might take my Zyrtec a bit early as I didn't take it yesterday and now my seasonal/indoor allergies are starting (which can also make my itchy! and I do try not to itch!).

I saw the liquid Benadryl stuff (I thought it was a kids thing), I might buy some just in case. I suppose it would be good to have on hand as I get hives occasionally that are very annoying/itchy/hot. Especially if it stops them more quickly. I think I've learned to tell apart my occasional low-bothersome hives and these types of flares from something (like MSG) that are very uncomfortable.

I did wake up last night with a horrible migraine and had to take Advil every four hours, and it's much better this morning, too. I hope that stuff is out of my system!

MightyMouse - I'll check out that cream. Itchiness is no fun. And I find Benadryl makes my mouth/throat really dry so I'm only trying to take just as many as I need. I'm on an H2, but this reaction was so bad I don't think it had a huge effect. I rarely eat MSG (I just assumed it was bad and try to avoid it) but the Ramen had large quantities. I just hope the hives keep improving!

Elfie - I didn't know there was an MSG allergy. Hmmm. I am fairly certain that was not tested on me. Whatever it is, I have to watch for it. I know MSG can be naturally occurring in a few things, but maybe those amounts never mattered. Like you said. I'm sure I got an overload in that Ramen packet. And my system does not like it anymore. You know how new things can pop up, too.

Just read all your food labels.

It is in almost all Campbells soups except for one of those healthy lines they have.

I stood there in the Campbells aisle for 20 minutes trying to find a cream of mushroom free of MSG the good new was I did.

It's also in a lot of chips.

I just read all labels now because I seem to not tolerate it at all.

I am afraid to eat Chinese food too unless they advertise no MSG!

I honestly didn't realize how much it is used until now.

lieze

Thank you so much! I wish ingredient labeling had to be more prominent - especially for things that cause such awful reactions. I feel crappy now and was doing good (for me!) this morning.

The hives are creeping around and not going away, or coming and going. I talked to the Pharmacist and he said to take Benadryl every 4-6 hours for 24 hours and if they stay gone after that go back to Zyrtec.

If they worsen tomorrow, I should call my doctor.

They aren't worsening...just hanging around. As far as I know it isn't a food allergy. But now I have a terrible headache in addition...so I shall avoid MSG after this in case that was the culprit.

I've no idea what else it could be.

I feel dizzy after it, too, with a very mild headache. I want to avoid any food that makes me feel worse/gives me hives, of course!

I read online that MSG is horrible, other people saying it is safe, etc. Now. I cannot 'fake' bright red hot burning hives! And the only abnormal thing I had today is MSG...and the hives started coming out while I was eating so I am pretty certain this time it was the Ramen.

The good thing is I know to avoid MSG now, the bad thing is how do you know where it is hiding?

I know I shouldn't have caved and had Ramen Noodles, but I was hungry, tired and need the salt.

Then I got itchy red hives all over my chest/trunk area. They are getting better on their own, thankfully, as Benadryl makes me so tired during the day. But they are still uncomfortable and burning.

I paid $500 for a food allergy skin test last year and nothing came back positive. I'm allergic to the more 'normal' things - dust, pollen, etc.

Also, my stomach is acting up now (but this could be stress or disagreement with the Ramen rather than allergy).

Any advice on what I can do? You think my food tests would've shown something if there was something, but I did some research and some people are affected by MSG with allergy-like symptoms. Is that possible?

Edit: I just took a Benadryl because it has been 20 hours since my Zyrtec dose and I'm still a bit itchy/burning. Last time I had a weird reaction like this I was told by the pharmacist to skip Zyrtec that day and take a Benadryl every 6 hours (if needed) for 24 hours. So it's the same situation and I'm just doing that. I do wonder how Benadryl is better than Zyrtec for this for 24 hours? Is this pretty standard? I just hope I can avoid dose #2 until closer to bed time, though. Yawn.

I hate these reactions because it makes me POTSY.

I've had those twitches, too...but never really thought about it. Tingly, annoying twitching feeling.

I did have a pulmonary breathing test a year or so ago that came back 'clear' (no asthma). So that was a relief.

Glad I'm not alone. And I'm slowly trying to start to exercise again. I just feel to stagnant and fear it'll make things worse for me if I don't get more active. It's very difficult and at least I'm not alone!

Probably Propranolol - keeps my heart rate within reason, not 180 climbing one flight of stairs!

Fun.

I'd love for you to get a definitive answer. But. Brain surgery? Sigh.

And I've met my deductible, but not my 'co-insurance' amount yet. So I very much understand. Except for a Kayak, I'd prefer a handbag.

Don't hate me, but I'm one of those who can exercise- NOW. I have had many periods in my life where I could barely take a shower, much less walk around the block. My improvement seems to have come with 2 things- resolving my perimenopausal hormonal craziness with a twice weekly hormone patch AND consistently taking my MCAD meds.

I have noticed that when I first start exercising I have to get over a hump. At the beginning, every time I work out, I am in extreme pain & completely fatigued- naptime . (This lasts about a month.) But if I stick with it and work through it, eventually I get less sore, stronger, and become energized by the activity. I am eventually able to do more and more. I battle injuries because of connective tissue problems that set me back. But overall, I am at a point where exercise is beneficial to me.

That being said, I am certain that deconditioning was NEVER the cause of my illness, but becoming deconditioned worsens things for me.

Big hugs to those in "Reclinerville." I feel for you & have been there many times. The most frustrating part of this illness is the variability. i can exercise NOW, but I may not be able to next week. Grrrrrr.

Julie

I'm having a hard time getting over the hump! But I agree...I don't think it was deconditioning causing it. I could get around fine and was walking a lot!

H1 and H2 help me...even though they don't think I have MCAD! Just icky allergies...but somehow allergy control = feeling better. And if I feel 15% better for that? That's a LOT for a POTSY!

I think it probably depends on where you are in your illness, what else is going on, etc. One treatment is not for everyone.

I push myself, probably too much. But I'm stubborn. I saw an amusing post elsewhere once...and older Irish woman. She commented how she was often so worn out/dizzy but kept going (no one knew what people had years ago, as many of you know!) and she's 'still alive.' I somewhat feel like that. Still kicking.

I even take the stairs sometimes, even though it makes my HR go up. As long as it goes down quickly I know it's 'just POTS.' I'm too deconditioned now, though, and need to start working out. I know it's going to be awful. And the pain I get is awful (in my muscles/body aches).

I'm worried there's something else going on and I might be worse someday (although I hope not!) so I do as much as I can now without fainting. I asked my old EP outright if it was really bad to be like this. He seems more along the lines it was up to the individual and I'd know my 'limit'...and I guess if this takes a few years off the 'end' what can I do. I need to try to live now. At least that's how I look at it.

But, overall, most doctors I've talked to think at least the minimum exercise I can tolerate is good. And keeping active. And doing things. Mentally and physically. It's a balance.

But I hate the comments and hate the fact that people say I'd be all cured if I were thinner; I keep repeating that I was sickest at my thinnest, could not be cured at that time or subsequently by weight loss, and that I gained weight on purpose. I also mention that at the rate I'm going, I'm going to be so sensitive to every food there is that I should try to enjoy any food I can while I can. I'm still waiting on wheat sensitivity but I've developed almost every other possible one.

Well, be careful what you 'wish' for...my Celiac Disease markers came back positive and I'm trying, but it's so.difficult.for.me. I guess I should just start eating mostly fruits/veggies and some protein as I'm not happy with my weight. I am so sad about it.

But I agree. If you are not doing anything to cause it, they should test you for what you think might be the issue...and not accusing people of starving themselves (too thin) or overeating (overweight). I'm sure I look like I eat my fair share of ice cream and donuts. I don't.

Erik - I always assumed my very dry mouth, dry skin, etc. were from POTS and allergies. Maybe, maybe not. It's so hard to pinpoint, isn't it? I have to have yet ANOTHER chunk of lab work before I head to the Rheumatologist. I'll bump this after I get the results and talk to her. Thanks again for all you help/info!

Bella - I agree. I don't want to be on medicines that would make me worse unless I had to be on medicines (in case of Systemic issues).

Mirrey - Definitely do mention it. At least maybe they can do some lab work on you to see if anything comes back and go from there.

I do have a lot of 'muscle pain/body pain' and fatigue. Which is the worst. But. POTS or something else? I hope I know someday!

At least now I feel a bit better...maybe it's more POTS than Mirena? Maybe some is POTS? It looks like I have to keep the Mirena n for now so I guess I'll have to try to start exercising more.

I know I should anyway, but goodness, it's hard with POTS.

Good news on this - my OB/GYN office was very understanding since it was a last-minute lab work problem. I explained as of Tuesday I thought things were OK, and here come more mysterious labs Wednesday afternoon that were showing a 'problem' so I may need a follow-up test/redone.

Whew. I didn't want charged a last-minute cancellation fee if I could avoid it since the lab mess wasn't my fault.

Firewatcher - I didn't realize I could just go in for a 'problem' - I'll remember that next time!

Erik -

Thank you so much. I'm digesting all this and will further read through it tomorrow. I don't see my Rheumatologist until next month so I'll have to remember to update on what she advises me to do or take (if anything) at this point.

Thank you again and I'll review when I'm more awake.