Lovebug

Well the feeling I had was almost unbearable. My husband and I were in a restuarant and I had to walk out. I walked down the road and around trying to rid myself of the feeling that I needed to run as fast as I could till I dropped. I went back to the restuarant and sat there shaking both my legs (and arms) until we got our "to go box" and paid the bill. It was awful...lasted about an hour or so. Anyway, I'd love to be able to take these supplements but it seems I always have this reaction. I think it is more related to B vitamins but not sure if CoQ10 would cause it and since I took both, it could have been that... Anyway, thanks for the replies.

It seems everytime I try to take something with too many vitamins I get so hyped up I'm miserable. I feel like I'm losing my mind. My cardiologist told me that I must be careful with too many vitamins but when I saw him the other day, he recommended Cardio Essentials which is CoQ10, L-carmitine, L-taurine, and Hawthorne. The dose is 3 pills in am and 3 pills in pm....I took ONE, just one in the morning. I also took a powder packet called LoOz (rapid electrolyte replenishment) which has vitamins as well. It is a packet like Crystal light that is added to water. Anyway, I was so wired I couldn't take it. Has anyone else had this experience? Is it just me?

Octeride scan is negative....YIPEE!! But Lordy I sure felt bad last night. This morning I refused the CT of adrenals but will see my doctor next Thursday to see if I need to have it done anyway. I may be talking to myself but just wanted everyone to know.

Hi All, Just wanted to give an update since some of you asked. I had my Octeride scan today. Got injected at 9 or 10am, waited around 3-4 hours and then had a 20 min scan. I go back tomorrow morning to have the 2nd scan (same as the first one...20 min). Then I get an IV for the contrast for my CT of adrenals. Everything went great and I left feeling confident. 3 hours later: CRASH.....my Fibro/CFS has to be the worst it has ever been and I'm slightly orthostatic (nothing I can't handle...so far). Anyway, the pain is so bad and unrelenting. Pain in my eyes, head, arms, legs, ears, joints, sore throat, EVERYTHING hurts! I took my shower which usually helps, it didn't. I'm laying flat on my heating bad which usually helps, it didn't. I'm so miserable and afraid that the CT dye will "tax" my body and I'll feel the same way. It makes me want to reschedule but this is my only week off from work until spring break. Sometimes I get so angry at this disease!!! /Rant Sorry but I get like this when I'm miserable. I'm actually one of the lucky ones who have less severe symptoms. Thanks all!

Sounds like classic IBS-C. Physically there is nothing wrong but functionally your smooth muscle peristalsis is chaotic and causes stool to stay in colon longer. This only makes constipation worse b/c the longer stool sits in colon, the more water is absorbed from it so it can become hard (although isn't necessary to be considered constipation). Just a thought...

Hi all! Thanks for all the responses. I feel exactly like you Katie! I haven't noticed dropping things but I'll need to pay attention to that. I get so sick of all these diffuse miserable symptoms!!!

Lately I've been having episodes of choking on thin liquids. In my lifetime this has happened occassionally but lately I've choked on thin liquids numerous times in the past month. The first one (& worst one) was mouth wash. I wasn't even swallowing (just rinsing mouth) and my body decided to swallow I suppose (like it forgot what to do). Anyway, I think I had full laryngospasms. Then I choked on juice from eating a pickle, water on a few occassions, and even saliva! Immediately after my throat gets sore and feels slightly swollen. What is up with this!?! Does anyone else have this? It makes me think MS or something similar but who knows.

Now that I think about it, I've had CT AND MRI contrast before with absolutely no reactions. I still get nervous b/c an allergy can develop at any time but I'll just pray. I had the same "warm" feeling down there too, LOL, but the tech told me to expect it so it wasn't bad. My heart was going 90 to nothing on that monitor though!

anaphylaxing My doc ordered the Octeride Scan and CT of adrenals. I don't think it is with contrast but I'll check. Thanks!

I work fulltime but the hours are so good and I have huge breaks of time that I'm off. I believe that the only reason I'm still working is because I have HyperPOTS so I don't pass out. If I were passing out, I would not be allowed to work in my field (nursing). However, I'm similar to ramakentesh in that I get up some days so miserable and think "I can not take this anymore! I can not do this!". Yet, I always do and I always make it. I'm thankful for that. I keep my prayers going so that helps.

Hi! No...no Zantac/antihistamines. I'm actually holding off b/c the doc is about to test for MCAD. I have such bad GI symptoms though so I'm really wanting to start a GERD med. As far as having this scan, I'm sure I won't have a rxn but I'm always nervous. I'm beginning to wonder if I even need it with just one high reading of VMA. I researched that these can often be high from things such as caffiene consumption and stress. Well, when collecting the urine I was definitely stressed b/c I was going through one of my "storms". Also, I can't remember but think I had a Vanilla Dr. Pepper. Thanks for your feedback.

Thanks so much Charmed! Great info there.

I do not have severe allergies, except sinus allergies. However, there is a suspicion of MCAD although my doctor is just starting to consider this at my request. I am very sensitive to certain meds. I'm getting it done b/c I had an elevated VMA on a 24 hour metanephrine test. He was checking for pheochromocytoma. At the time the urine was collected, I was going through a "storm" so I'm not sure if that is why it was elevated. My doc is a cardiologist that treats dysautonomics but he was concerned that at the high VMA and ordred the scan. Thanks for the responses!

I will be getting one and am, of course, concerned about how my body will react. I'll already be nervous from just doing the dang CT but getting the radioactive tracer always makes me nervous even though I've had a CT with contrast before. Anyway, wondering what others may have experienced and what results were obtained. TIA

Julie, Do you know how one could locate an appropriate doctor for this? I looked on the Mastocytosis Society webpage but found nothing. I'm going to ask my Dys doctor about this but he's a cardio treating my dys...I doubt he wants to venture much further out into these exotic type illnesses. Also, do you think Lyme disease is related to MCAD or have you heard that it might be linked? TIA

tennille Great to hear of the improvements! I know what you mean about moment to moment as that is exactly how my body is. However, I've made imrprovements and can function relatively well. Just miserable going to work (or just existing) on certain days/moments. Hang in there and Happy New Year!!!!

Hi GF!! I've thought about you often since you have been through so much this past year. How are you doing? How is your husband? Is everyone getting along better now? Anyway, hope you are doing well and it's great that you are here posting. Re: your question. I do not know about that type of chirpractor but I went to see a chiro when I first got sick and I did have positive outcomes albeit only slight improvement. He would offer a brief massage by a massage therapist prior to his adjustments and he also required his patients to perform very easy exercises to loosen yet strengthen muscles. I enjoyed it and went as long as my insurance paid for it.

Biofeedback is a wonderful tool that can be used at home. However, I must say that there is extreme skepticism when it is claimed to be a cure. Especially since I actually tried biofeedback under the care of a therapist and all I did was get sicker (this was before my diagnosis). As a matter of fact, I was on a strict exercise regimen and eating quite well at the time. Having said that, I personally believe that the mind is an extremely powerful organ and can definitely have an effect on our bodies. But if our minds controlled "that much" then why don't doctors use it for Cancer patients? They could teach patients to "will" away the cancer and control the bodies immune response so that they could fight the cancer. I read through the entire website and feel that more information needs to be present. They definitely need to address how much this costs and what insurances they take. Also, how much (& what is involved) in the mobile appointments that they offer. Everything was slightly vague.

Thanks Carol! I take such a low dose BB but I did see where it is contraindicated with MCAD. I'm wondering if the very very strong DECAF coffee that I drank earlier that night caused it. I only had half a cup. I also had a jello shot (just one) and a sip of vodka (just one) on Christmas Eve in addition to said cup of coffee on Christmas day. Combining those two incidences may have set me off but it sounds as though it could still be MCAD. I mean, I actually feel as though someone is shooting medicine directly into my heart and I can feel it spread. Also, I've been having repercussions the last few days. I don't get red or have itching but I have all the GI symptoms and vital sign volatility. Oh well, thanks for sharing!

Carol, Wow...I do have lots of symptoms associated with MCAD. But I'm on a B-blocker and found that it helps me. Even once when I had one of these attacks, I took an extra dose of my Inderal and I did start feeling better. Which is one reason I never thought I had MCAD. What tests need to be checked to diagnose it? I am going to my doctor in 2 weeks and would like to mention it to him. Thanks for bringing it up!

That is EXACTLY how my episodes go....BP spikes, HR spikes, get anxious, get nauseous, severe pain in LUQ abd (sometimes accompanied by diarrhea), CP (I'm assuming from indigestion). Then, I'll start bouncing all around with my BP & HR. All other symptoms are the same but vitals are crazy & unstable. This is some scary business but I just suffer through it. I had one last night...Probably could have benefitted from taking a dose of B-blocker but never did. My body wanted to sleep so bad but it wouldn't let itself. I was just along for the ride, no control whatsoever. I HATE these! Oh, and mine usually start with a flush feeling in my chest that radiates to both arms. It feels like I'm being injected with an extremely cold medicine right in the heart and I can feel it going through my body. I suppose I actually feel the adrenaline...?

Are you alternating water with Gatorade or Powerade? I used to drink up to 4L/d and was concerned about diluting myself so my doc said to alternate with a sugar free sports drink just to get some electrolytes. Fortunately, I've gotten better and do not need to drink quite as much. However, I get more dizzy/lightheaded now than I used to but I think that may be related to blood sugar or just dysautonomia in general.

Potsmama, I call my episodes "storms" because they are usually accompanied by many GI issues, as well as fluctuating BP/HR. I've had HR go from 120's to 48 within a matter of minutes. My doc instructed me to take my BetaBlocker when this happens b/c my nervous system is going haywire and the Inderal will calm it down. I asked him if it is OK to still take it when my HR might be 48...he said yes & that I could get in the 30's and it would be OK. This sorta stunned me because, as a nurse, I would be taking some serious action if this happened with my patients. MERRY CHRISTMAS!

Hi Issie! Thanks for the response. I get lots of nausea too. There are some days I think I can't go on due to misery. Then there are days I'm so happy to be feeling functional. Oh well, MERRY CHRISTMAS!

Has this ever happened to anyone? Lately I've been feeling faint at times when I'm standing but I have never fainted since I've been ill (at least 3 years now). My professional career is saved because I have HyperPOTS so in a strange way I'm thankful for this version. However, the times I feel faint are strange. I'm not sure if it's dizziness or some type of brain shock that I'm feeling. I just know it doesn't feel right. Anyway, wondering if anyone has experienced a change from one to the other. TIA!