A Depressing Day

[Chaos]

So very sorry to hear you're in another flare. It's SO frustrating when you've been doing well and feeling like you maybe ARE in "control" and then you have the rug ripped out from under you- yet again. Seems to point toward the fact that it CAN'T only be deconditioning as the cause when you've been so consistent at running 5 kms 3x/week as you've been. Don't think you can become "deconditioned" (or have your heart shrink in size) just overnight. (Don't get me wrong, I'm a BIG fan of exercise as a treatment for most things, but the theory that POTS is just due to deconditioning and lack of exercise really bugs me.)

Is fainting part of your "normal" POTS profile? Seems odd to be having a low BP- especially after working so hard to walk up a hill. Also, do you feel like you get more lightheaded as you talk in a situation like this?

Hoping that Julie's suggestion of a Benadryl helps you out some.

Sending you lots of healing thoughts. Here's hoping all your exercise will at least help make your flare shorter.

[issie]

Seems to point toward the fact that it CAN'T only be deconditioning as the cause when you've been so consistent at running 5 kms 3x/week as you've been.

Seems odd to be having a low BP- especially after working so hard to walk up a hill. Also, do you feel like you get more lightheaded as you talk in a situation like this?

Just thinking about what was written here. Exercise does lower my blood pressure for the length of time I'm doing it. It's odd that this happens - because it should increase your blood pressure - but mine lowers. I think possibly because it works the muscles in my legs and increases blood flow.

Issie

[MomtoGiuliana]

Interesting that you mention the dehydration as a possible trigger. I had the worst flare up ever during a visit to Arizona (desert) 18 months ago. I think I did get dehydrated, even though I thought I was drinking enough, b/c I am not used to the dry climate. I guess by the time I realized I was so dehydrated it was too late to catch up as much as I tried. I became so incapacitated I had to use a wheelchair in the airport to get back home. It was for me very shocking experience b.c I had not been that badly off for years. Fortunately I recovered quickly to my baseline (after several days).

[Serbo]

Ram - Sorry to hear you had the relapse. The only time I have had something similar is when i completely over did it on salt. Was in a restaurant and then had everything you described. Polyuria went crazy (and I am on DDAVP!).

Suspected I had had to much salt (hyponatremia?) so after the faint tried to even things out by taking more DDAVP and eating a few banana's to even it out with potassium. Took about 3 days to feel back to normal again.

Mentioned this to my endo and she couldnt really explain it, but dehydration induced electrolyte imbalance perhaps? Whatever happened to me sounded similar and took a few days to recover.

[Clairefmartin]

Can you get IV fuids? I've had this similar feeling when "dehydrated", or hypovolemic, or whatever it is for us POTSies. Also was having horrible blood sugar swings that did this as well. I can feel my sugar when it is crashing, I have to avoid eating sugary foods with no protein to slow the crash, or I get hot in the face, tachy, head swimming (not lightheaded) almost vertigo feeling.

I hope you feel better soon! I had been fairly well for years then my last pregnancy put me down harder than ever - so I know the feeling, it is terrible. Best of luck!

[potsgirl]

I'm also sorry that you've had a relapse and hope that it's over soon. I'll second Julie's idea to try Benadryl - I get mine at a Target store and use the generic brand. I would give that a try and see what happens. It will probably make you either sleepy or jittery. Thankfully, it makes me sleepy, and I take one every night before bed.

Get better soon, we're rooting for you!

Cheers,

Jana

[sue1234]

Am I the only person in the world that Benadryl does not make me sleepy?? We had to evacuate for a hurricane a few years ago, and I forgot my Xanax for sleep. We bought some Benadryl and it did nothing to make me sleepy. Next, we bought some OTC sleep meds(with Benadryl) and still nothing.

[juliegee]

Hope your relapse is beginning to resolve, Rama. Did the doc have any helpful ideas? Hope he checked your potassium as your symptoms are consistent with low levels- that's a pretty easy fix.

I'm still wondering about a low grade anaphylaxis or anaphylactoid episode. I have had these last weeks, even months- where my BP is in the tank and I am always on the verge of syncope. Sometimes, my lips and throat tingle or swell, sometimes they don't. I also sweat a lot- that is an indication, I'm about to lose consciousness. The shaking occurs after the worst and I am very cold at that point. Having to run to the bathroom for excessive urination or "D" can also be a part of this. Sometimes ALL of my skin begins to turn "tan." My lips get very red and all of my skin darkens- kind of like a full-body dermatographism. During these episodes, I feel very panicked or anxious- I get a feeling of impending doom- I KNOW I am about to die. Very dramatic and not like myself at all.

Just thought I'd share in case you think this might fit. Give you a few things to look out for... Have you given the benadryl a whirl?

Feel better-

Julie

[ramakentesh]

Yeah it kind of does. I havent got panic or adrenaline surges this time, just overwhelming nausea, dizziness and sweating. I feel like im going to pass out at any stage.

I have had zero appetite since this all started and as soon as I eat I get diaherra. Maybe its a stomach bug - hopefully it is otherwise its back to the drawing board I guess.

Working is hard enough relatively at baseline so i have no idea whats gonna happen next year but ive just got to stay focused on other things

[arizona girl]

Oh rama, so sorry your dealing with this. Those symptoms sound like what happens to me when my BP suddenly drops. Feels like barf city, sweaty, clamy, ringining ears and you can't get yourself up off the ground. Hope it's just a bug, but you know in your heart already if it's not. I can't believe they don't have IVIG there. You already have the autoimmune stuff going on. Did you ever get a skin biopsy for small fiber neuropathy? Have you ever had you total quantitative immunoglobulins tested? It couldn't hurt to rule those things out. They simply have to be treating patients that have hypogamma with ivig, in any society that is as large as austrailia. If they treat for that, then they may be treating for the other in america FDA approved conditions. More and more of these autoimmune illnesses are going to be approved for it. There are many clinical trials using it and other biologics. One way to track that down would be to go to a specific products web page like privigen's and find out what doctors they are selling to in your area.

You are so smart and have been a great resource to so many of us. I hope we can help you now. Let me know if there is any way I can help.

[ramakentesh]

its very frustrating but I believe that the few POTS doctors there are in Australia that treat POTS have VERY fixed ideas about its mechanisms, and those theories do not include autoimmunity even with all the evidence from the mayo clinic, etc.

Im going to email someone at Mayo to see if they know if any once does the QSART tests, etc in Australia.

[arizona girl]

Well here's the push on this. Though the IVIG is having an effect on the neuropathy, it was the immune deficiency, hypogammaglobulinemia, which my insurance approved me to be treated with IVIG for. The only neuropathies that are FDA approved in the US is polyneuropathy and the autoimmune one that mayo treats.

My neuro thinks both the qsart and the skin biopsy are useful for diagnosing the small fiber. Get both done if you can. He himself has come to the conclusion that autoimmunity and/or hypogamma are defects of the immune system. He treats all of them pretty much the same, adding in supporting meds depending on the disease, ie, MS, stiff persons, polyneuropathy, etc. I might be dealing with a form of lupus and he said even if, I am on top of the other stuff, he didn't see my treatments changing that much, maybe an immune suppressant, and/or mananging symptoms.

So, I'm trying to figure out a back door for you, to go around your pots doctors. Are they mainly cardiovascular? Cardio's tend to just try to treat symptoms, not cause. Then your anks is being treated by a rheumy, also who can be rather fixed or old school in treatment options. Though they are starting to use some biologics. My current cardio, now that she knows what I have, has started recognizing my symptoms in some of her patients and has started referring them to my neuro. So, maybe an immunologist might also work for you, not though a common allergist, find someone who does infusion for their patients.

Anyway, what I'm coming to understand is that if there is hypogamma or autoimmunity, it is a sign that the immune system is broken. There are a lot of associated autoimmunities connected to hypogamma or CVID. So, that might be true for you. Maybe google IVIG and anks and see what you come up with. If they test your immune system and it is low in those immunoglobulins you would quailify for IVIG and thus get to treat both.

I'm like you to, get orthostatic hypertension/HR, with the increase in norepi, that is until I have what I call an episode, like the one you described and I'm kissing the ****** dirt. Thankfully, not often. I like to say I'm the queen of compensation and avoidance. Without realizing it, I was doing things to protect myself. I was able to document low BP when that happens and tilt table reduplicated it.

You can check with my neuro's office too, Phoenix Neurological associates and see if they know anyone where you are who does the tests. He specialized in neuromuscular autoimmune disease. If you decide to come to the US, to get to the bottom of it, we can always host you here in arizona, though we've never managed an actually get together, we do have a group of us here, who would support you.

Hang in there, don't let it rob you of you Joy!!

[ramakentesh]

thanks heaps for the kind words and the offer. I was in Arizona back in 2008 but being quite well at the time POTs wasnt on my mind much. LOL

So, I'm trying to figure out a back door for you, to go around your pots doctors. Are they mainly cardiovascular? Cardio's tend to just try to treat symptoms, not cause. Then your anks is being treated by a rheumy, also who can be rather fixed or old school in treatment options. Though they are starting to use some biologics

Exactly - my cardio/POTS docs dont really want to talk about the autoimmune side of things at all. My rheumy just said he treats ankylosing spond so had no advice about the other condition other than suggesting that biologicals might help both or make POTS worse. LOL.

I might try a and see a neurologist and see if they can at least get a QSART test done.

thanks for all your help on this anyway.

[Dizzysillyak]

Hi Ram,

I see that you're thinking it may be digestive. Have you tried drinking kefir, eating yogurt or taking a probiotic ? I lean towards drinking kefir myself because it has more probiotics than yogurt and as opposed to a pill, you know the bacteria is alive. Any health food store, and even some regular grocery stores now, in the US has these so I'm assuming your's would too.

I had a friend once who was in the hospital for a nasty gut bacteria. She went through the IV antibiotics and was released but still complained of digestive problems. Gas, pain and bloating. I gave her one strong probiotic and she felt better within an hour. And she never needed a second one ... That's not the norm but makes for an interesting probiotic story. Usually, it takes more than 1 pill ...

hope you feel better soon ... D

[issie]

Yeah, Arizona Girl - still would like that meet. The last one we tried kinda fell flat. It'd be nice to meet you Rama if you come.

Issie

[ramakentesh]

Im in Australia so that might be hard

[Katybug]

Rama,

Maybe seeing an immunologist would be a good option if you think there could be an immune component to your symptoms.

I also wanted to 2nd or 3rd the sentiment that you have always been a wealth of knowledge and comfort here and would like to return the favor in any way I can. Just let me know...

Katie