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khrios
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Hi,

I have NCS and other symptoms, such as severe allergies, upper GI dismotility, hypovolemia, at times elevated heart rates, intolerance to heat and cold, nightsweats.

For the past month I have been having these attacks -1st an adrenaline rush, then I start shaking, then I have severe diarrhea, rinse and repeat. This state could last from minutes to days, with the uncontrollable trembling on and off.

My doctor is baffled. Has no idea what it could be. He is willing to learn, if I bring him research and information.

Can you help me find information which explain these episodes and what type of testing and treatment is required?

Has anyone else had a similar experience?

Thanks,

Ann

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Hi,

I have NCS and other symptoms, such as severe allergies, upper GI dismotility, hypovolemia, at times elevated heart rates, intolerance to heat and cold, nightsweats.

For the past month I have been having these attacks -1st an adrenaline rush, then I start shaking, then I have severe diarrhea, rinse and repeat.  This state could last from minutes to days, with the uncontrollable trembling on and off. 

My doctor is baffled.  Has no idea what it could be.  He is willing to learn, if I bring him research and information. 

Can you help me find information which explain these episodes and what type of testing and treatment is required?

Has anyone else had a similar experience? 

Thanks,

Ann

Hi Ann,

I remember you from NDRF. I have the exact same thing. It starts out with an arenaline type rush, then the runs, then shaking. And I get really chilled. My hands get like ice.

The episodes usually last a full day until I go to sleep and sometimes in to the next day. I have had cathecholamine (sp) blood draws and they all come back normal but I question how normal the results would be if I had the tests done when I actually feel that way.

At Mayo Dr Low told me these episodes are autonimic storms but he didn't really tell me how to prevent them or what to do when I got one.

The only thing I find that helps is half an Ativan. It calms down my system and actually helps with the runs. Nothing else helps but riding it out.

Sorry, I have nothing in writing. And this was just a guess by DR Low as to what's going on when I feel that way.

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Hi,

Yeah, the NDRF site was extremely helpful when I first became ill in 2001. I have been managing my illness quite well with little to no medication, just life style changes. No hot showers or baths, no getting overfull at meals, always keep properly hydrated, keep away heat and cold, etc. Allergy meds as needed. Until now.

Autonomic storms is a good way of putting it. I find them very debilitating. I am afraid that if I don't find a solution soon, I will lose my job.

I went back to work six months ago. I used to be a social worker. When I first became ill, I quit working and went back to school, so I could work in a sitting at a desk type job...became an accountant.

Unfortunately, the shaking keeps me home and in bed. If it was just the diarrhea, I could manage.

I will try to find information on autonomic storms...see what turns up.

Thanks,

Ann

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I get symptoms where i start feeling very cold and tired, then i feel a feeling of uncomfortable-ness and weakness, my skin goes pale and my veins dissappear on my arms, then my body starts to tremble uncontrollably - and i get a strange surging in my head and my vision goes weird. The whole thing lasts about twenty minutes, but i have a strange feeling of mental confusion and restlessness that stays for about two more days.

Since these episodes started - and they are usually preciptated by a period of little sleep, or even minimal alcohol consumption - i have had orthostatic intolerance and dizziness, vitreous floaters, weight loss (which has improved), hand tremors, foiod allergies, feeling cold all the time, and palpitations.

Ive been diagnosed with POTS, but no cause was found or looked for other than confirmed low blood volume.

I have found that a betablocker does make the 'storm' more bearable.

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:lol: I have had this for many mooons, and my doc told me that this was when I needed to take the extra salt and beta blockers. It certainly does help me. It really is an overload, and think how we deal with them. As for the diah. irritable bowel is part of the syndrome, see if you can get something to calm that down for a while. Perehaps you can gain a minutium of power back. Miriam
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You mentioned that these episodes are sometimes precipitated by alcohol or little sleep. I was told by different autonomic specialists not to have ANY alcohol. Also if you need something to sleep you should ask your doctor for it, because rest is vitally important in dealing and healing with POTS. I hope you feel better soon. Martha

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Hi Ann,

I can't point you in the direction of any articles/info. But I can tell you that I've experienced the same symptoms. I have POTS and in the beginning when I started noticing symptoms, the diarrhea is what hit me first. I don't recall if at that time I also experienced shakes, but those started for me several weeks after the diarrhea.

I wish I could help you more!

Kristin

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My symptoms are so severe that I have lost 12 lbs already. I need to do something. I am exhausted and weak. I think I must have a bug in my gut that is causing the diarrhea and the autonomic symptoms are just there because that is how my body reacts.

I had a comprehensive stool analysis two weeks ago, but the results won't be in until the end of next week. In the meantime, I don't know what to do to stop the diarrhea. I am afraid of trying Imodium, or anything like that.

What have you tried for diarrhea?

Ann

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one of my best friends takes huge doses of immodium for diahrea as a result of ibs--you could try a child's dose and see if it causes problems. I've taken it in the past without incident.

Also, the bismuth in pepto can sometimes help--some bugs don't like it much and it's a pretty low tech thing to try, although if you have problems with asprin, you have to be careful b/c I believe there is salacylic acid relative (the active ingredient in asprin) in pepto. The package has a warning that if you're allergic to asprin, not to take it.

nina

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Why are you afraid to take immodium? It's GREAT ... I always take it when I get the runs (I have IBS-type symptoms too sometimes, the feast or famine thing) ... If you have gastroenteritis (or a stomach flu like thing), the immodium will either slow things down just a little or it won't work at all. The bug will pass, usually in 24 hours or maybe less. (I just went through this :) ). But otherwise, if it's the runs and no virus is involved, you need to get them to stop ... it's impossible to stay hydrated and to keep your electrolytes in balance--which makes the POTS symptoms much much worse. I always start with a 1/2 tablet, which is 1/4 the adult dose... and it's enuf to do the trick.

Runs that lasts weeks? Time to call the doctor and ask what to do!

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I tried Lomotil for diarrhea once and had syncope, as a side effect, so I would rather not take Imodium, if at all possible. But, I may try just a little bit of it.

I have been to two different doctors in the past month regarding this issue. The first was my PCP who ordered pheo 24 hr urine test and a cbc and a celiacs disease test. All were negative.

After that he was out of ideas and said to try Biofeedback!!! Like that could stop the runs. The other doctor is an internist, who works with CFIDS, Fibro, & such type patients. He ordered a comprehensive stool analysis, but the results won't be in until late next week. The other test he ordered was the Lyme & friends test.

Well, I tested positive for Babesia, a tick-borne parasite & equivocal for Lyme, but he thinks I have it. I am getting a second opinion on these results from an immunologist.

Of course, none of this will stop the runs now, which is what I need.

I have a paradoxical reaction to all benzodiazepines, so ativan is out of the question.

The internist gave me a small dose of cortef, 5mg. It's supposed to help the fluids stay put. I also have been drinking Gookinaid, which is an electrolyte replacement powder.

Ann

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Hi Khrios - If you have Lyme Disease and babesia they will wreck havok on you,,,,they hit every single part of your body, especially anything to do with your nervous system. you can feel like death.

Have you been able to get on treatment? If you would like to email me , please feel free to :)

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Don't forget the BRAT diet, bananas, rice, apple juice, and toast. It helps "firm things up". I had a horrible POTS episode 2 years ago, and lost 37 pounds in 1 month, because my GI system just started roiling with no end. Everything went through me. Also, I lived on Pedialyte for electrolytes, and Ensure with extra protein to get my vitamins, as pills were out of the question. Good luck to you!

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Maybe syncope wasn't a side effect to the immodium -- but was a side effect of low blood pressure and dehydration, loss of electrolytes etc?

I was going to mention the BRAT diet as well -- but I'll add a couple details

(ripe) Bananas (which have the most pectin)

(white) Rice (not brown--too much fiber, too hard to digest for now)

Applesauce (my doc suggested applesauce and not apple juice, but I can't remember why ... you wouldn't want to do raw apples either)

(white) Toast (same reason as the no brown rice ...)

best,

m

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I'm not a good judge re: Imodium because I really can't handle any meds. It's like so what else is new.

As far as biofeedback it actually can help a little. The trick is finding a biofeedback instructor who understands the ANS and sympathetic overload. And how to calm it down.

One of the tricks used in biofeedback to calm the sympathetic output is hand warmth. It does help a little. I still have tapes from when I used to go to biofeedback and I really need to use them again. The tapes help you to visualize your hands getting warm. Once your hands warm up everything calms down. Actually going to biofeedback where they hook you up to a machine is good initially until you can do it on your own.

If visualization doesn't work another way to warm your hands is to use a heating pad or gloves. I prefer the heating pad but mine blew up in the microwave the other day. I was using the kind you nuke.

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