LindaJoy

A lot of the pain meds like morphine and delaudid (sp?) can cause respiratory problems (actually failure) if given in too high doses, or even if just given to someone who cannot tolerate them due to underlying conditions, like your POTS, for example. Could be that you can't tolerate it with your compromised autonomic system. Also, with the rash starting, it could be a localized (for now) mast cell reaction that could become bigger and bigger the more you have of the medication. After my localized hives with IV Zofran, I said, "Forget it," and I've put it down on my medication allergy list (which grows by the minute, I think) just in case the reaction becomes more systemic with use of the drug like happens so many times with so many things I come into contact with. Hope you feel better and can find a pain medication alternative so, should you need one, you can get relief. Lindajoy

Debbie, I'm doing this right now when I eat. I get the shivers so badly, I feel cold, yet I sweat and then a couple of hours afterwards. No one can find why I do this either. But, I can tell you that, when my cortisol level goes low--I have Addison's and have to take Hydrocortisone three times daily for it--I get shivers like this, too. Has your daughter had her cortisol level checked, or her adrenal function? I'm sorry if this has already been mentioned here. I am still in hospital and am kind of brain foggy, so I haven't been able to concentrate on all of the posts. I hope you find some help soon. These spells are horrible. I feel for her. Linda

These do sound like adrenaline rushes, but if you're kneeling down or bending over, then standing up suddenly, and you have POTS, feeling "swimmy" is understandable since your nervous systems, being disordered, can't adjust to your sudden shifts in posture as quickly as someone who has a healthy nervous system. Does that make sense? It's best to stoop down, not bend, and rise slowly. Give your body time to adjust to the change. With regard to your good bit of sugar. Do you have a sugar problem--diabetes, hypoglycemia? You may want to be checked if you're finding yourself getting light headed, with pounding head. After you've been deemed healthy or not, if you're healthy with regard to sugar diseases, you may want to refrain from a lot of quick carbs and lean more towards snacks that are more balanced with fat, protein and carb, so you don't get the sugar rushes and drops. Those are hard on ya, and once you get into the cycle of eating sugar, going high, bottoming out, eating more sugar, going high again, bottoming out quickly again, etc., it's hard to get out of that cycle and it ends up making you feel like crap. But, yes, I'm a sugar person, too. I used to love candy bars and kids' cereals. Oh, those were the days. Take care. Linda

I get palps when I have to urinate, too. I used to think that it was because I had to go so badly, urgently, and I was concerned I'd not make it to the bathroom, so the anxiety would cause the tach and palps. But, I really don't think so as I've actually gone into palps and tach after urinating. And, my urge to urinate can just hit me all at once, along with the palps and tach. I can feel really anxious with all of this, too. My, how we take going to the bathroom comfortably and calmly for granted when that ease goes away. Linda

I was diagnosed with POTS in 2005. I just got a Benign EDS diagnosis four months ago, although it's been pretty obvious I've had it since I was little. My son probably has it, as well. My doctor based it on physical characteristics, pretty much nothing else. And, that I pool so much, so must be flexible blood vessels, in his opinion. Linda

Hi, Anna, thank you for the site. yes, I've known Josie for years. She and I know each other from the mast cell site and Addison's site. She's a plethera of information. And, all she says about mast cells sounds so much like what I do, yet docs, two of the top mast cell docs in the world, say it's not mast cell. I talked with the allergist here at the hospital today, and he thinks the compliments that Katie mentioned may be worth looking into. I think so, too, so I'm glad to find a doctor who will support the testing. Thanks, again, all. Linda

Hey, Kayla. Thanks for writing. I'm sorry you've had eating problems, too. No fun. I hope you're doing better. If you open my post, "85th Hospitalization in 6 years," you'll read what I do when I eat. It's not pretty. Take care. Linda

Oh, geeze, not to be stupid but, what is SFN? I'm sorry. Linda

I know that morphine is considered one of the strongest medicinal mast cell degranulators out there. So, could it be a mast cell degranulation episode? Possibly. Yet, I have to think that if that were the case, you'd be itching all over. I don't respond to morphine that way, but I've been with patients who do, and they need Benadryl like...really, really badly because the itching all over is so overwhelming. The last time I was given Zofran through an IV, it burned a great deal, and had never burned like that before. I then got hives all over my right hand, the one that had the IV in it, and down my arm, especially my wrist. I took Claritin and it went away within half an hour. I honestly think my skin was reacting more to the burning that took place in my vein from the medicine than that I was having an allergic reaction, but I'm also one who doesn't take chances when I see hives, as I've been in anaphylaxis a few times in my life and I don't push my luck. If you're concerned, there are other pain meds that are not mast cell degranulators, so you may have better luck with one of them next time. But, since this has happened, I would make sure that medical personnel know about it the next time you may be given any pain medication, just in case. I hope I didn't ramble too much to be understood. I'm still in the hospital and am on a new medication and am experiencing some pretty good brain fog. Take care. I hope you're better Linda Oh, and if you do find yourself reacting to morphine in the future, I've been told that, since morphine can degranulate mast cells even in healthy people, don't automatically think you have a mast cell condition. There's a lot more to having a true MCAD than that. I know you're not going head over barrel with this. Just thought I'd mention it, in case you have a bit of concern. Take care.

Hi, everyone. The docs have started me on a clonidine patch, hoping it will help calm down the reactions I have after I eat. So far, no, but it's early yet. I'm at least tolerating the patch so far, and it's been on 26 hours. That's something. I'm just wondering how many of you have had success with clonidine? I know Dr. Grubb said those with hyperadrenergic POTS does better with clonidine than BB's. Those make me sooo symptomatic. I looked up clonidine here at the forum, but it seems not too many of you are on it. Issie, I know you're trying the patch. How's it going? I don't think this is the answer, but maybe it will help a bit. Linda

Hi, Heissovereign, How are you doing? I hope this finds you doing ever so much better. Please hang in there and know we're thinking of you. Lindajoy

Hi, everyone. If you haven't read my other postings, I'm back in the hospital with eating problems. The hospital docs think autonomic dysfunction is causing the symptoms, so they've put me on a clonidine patch to hopefully help with symptoms (not yet it hasn't) until they can get me into Vanderbilt. They think that's the best place for me to go. Questions. How long is the wait, usually? They said here it could be as long as a year. You who have gone: Did you find it helpful? Were the doctors friendly? Are you better for having gone? Would you recommend Vanderbilt? Thanks. I've read some of your postings about Vanderbilt, but I wanted to ask. Linda

I get the shakes really badly when I eat. That's one of the symptoms that I'm in the hospital for with the eating problems I'm having. I also develop tachycardia and do a whole lot of other things, but shaking is one of the big symptoms I absolutely hate. I have Addison's, and I'll shake when my cortisol level is too low, as well. Basically, I spend a lot of time shaking. Linda

Hi, Katie, Thank you so much for taking the time to share all of this. My doctor was just in and we told her about all this. She wanted to know if you had problems all your life or just got them, because she said most compliment problems are in-born, so you would have had problems your whole life. I think she's trying to say that can't be my problem because I haven't had these severe episodes my whole life, yet I have had allergy type things my whole life, since I was four. Anyway, have you had this your whole life or just recently? I really don't care, but apparently my doctor does. Ugh. She said she was going to see if I have had these tests done (my husband called CCF and no, I haven't had them, but she wouldn't listen to us), and if I haven't, they could run them, but in the meantime, I'm being sent home to have my pcp take care of this issue that they, in a big university teaching hospital couldn't, until they can get me into Vanderbilt, which is where they want to send me. They said it could take up to a year to get in, but in the meantime, my pcp can manage me and keep me going. Can you tell I'm feeling very frustrated right now? My pcp is the one who sent me to this hospital because she didn't know what to do for me at home, now I'm being sent back to her to take care of what they couldn't here. In other words: DISMISSED, again. We're trying to get a hold of the allergist who saw me in here the other day. He was a fellow, and he took a great deal of time with me, asked a lot of really good questions, and seemed to think outside the box. We want to see what he thinks of all this. My hospital docs are pretty much dismissing it. Oh, one thing you said that got me. Sometimes you get a headache even as the food is in your mouth. YES! Been there, done that. I always blamed TMJ, but sometimes, it's with things that didn't require much, if any, chewing. Do you ever get back in your neck, right behind your ears, like an extreme pressure and ache, right after eating? I did that with radishes yesterday. No more radishes. Thanks again, Katie. Linda

Thank you, everyone, for your suggestions. Katy, I'm very interested in these anaphylatoxins you mentioned. I've not been tested for those before. The plain ol' compliments, yeah, but not these. My husband called over to Cleveland Clinic, where I had the compliments tested years ago, and the doc's secretary said they don't even test for regular C5, let alone the C5a. We mentioned this stuff to my in-hospital docs earlier, and he said he could test for them. We'll see. Sara, I wondered about all of the blood pooling, too. I know I do that, but man, when I go into what looks like anaphylaxis after eating, I tend to think that a bit more is going on than blood pooling. It's probably happening, I know, and adding to problems, but I think something else is going on, too. Thank you, though, for the information. Issie, I know, I'm a mess! But, if I have anaphylatoxin problems, I can see where I would look mast cell but it not be. Hmmm.... Katy, who is the doctor who diagnosed this in you? Where are you, if you don't mind my asking? This doctor sounds like he's worth his salt, that's for sure. Also, you saw the list of symptoms I have after I eat. Are you saying that you do these same things, too, when you eat, just not as severe, due to this condition? Are there other triggers that cause this type of reaction when you have this condition? I've been trying to research it on the internet since I read your post this morning, but I'm not coming up with much. I was interested, though, in the Wikepedia information that said elevations in the anaphylatoxins can "cause a shock-like syndrome" that looks like an allergic response. That sounds exactly like me! Again, thank you, everyone. I'm so glad when I'm able to talk with all of you. You've become my life-line through all these years, physically and emotionally. I thank goodness, and the good people here who started this site, that you all are here! Lindajoy

One more thing, sorry, I should have included it above. What I've been told by therapists over the years about my family's lack of understanding and support, could come from several sources. One, they could actually be poopy, selfish people who truly don't get it and won't ever get it, due to their ignorant, selfish attitudes. Two, they don't understand chronic illness because they've never actually had to deal with it, so it's so foreign, they simply cannot comprehend, thus can't truly provide the understanding and support you need. Or, Three, they understand, but they 1) miss the old you and grieve her every time they see you, so they're dealing with their own pain with this, as well, and / or 2) they want life to be normal, just like we do, and when it can't be due to "the condition," not YOU, but The Condition, they grieve the loss, too, and since you're the most connected with the disappointment, they take it out on you because it's hard to actually get mad at a medical condition that can't stand on its own two feet. My kids remind me, at times, as does my entire family, how I used to be when I was well. Things we used to do, places we used to go, etc. When I can't do something with them, or plans have to be cancelled for something due to my illnesses, they do sometimes get mad at me. But, I don't think they're so mad at me as they are grieving for what good times we used to have and want to have again. They also get scared when they see me so sick. They're afraid I won't be around for long. Many people, I included, get angry when they are afraid, so I try and cut them some slack. Our illness is hard on everyone. We all walk around with fear, anger, grief, guilt, frustration, you name it. It's hard. I'm not saying that their anger at you for not being able to participate with the circus family outing is okay. I'm just saying, I wish things could be different for everyone, but if they get angry, it could be for several reasons, not just that they're mad at you, but maybe at the illness, maybe they're grieving, etc. Or, they could just be poopy. Hang in there, Pup. Lindajoy

Oh, Puppylove, I am so sorry this happened to you. It's such a pain when you are looking forward to enjoying something, to being normal, and the "condition" won't let you enjoy or be healthy for even one day. I so understand where you're coming from, from the frustration of not being able to enjoy a small piece of life, to feeling frustrated, and guilty, and everything else that your family takes your condition out on you. I'm in that boat a lot of the time, too. My son told me, about a year ago, "Geeze,Mom, you used to be hands on, almost too hands on at times. Now, you're not hands on at all." I felt soooo guilty. I am so proud of you for trying. There are so many days I don't even try anything out of FEAR that something MIGHT happen. For you to even attempt going to a circus, with all of the stimuli, people, dust, etc., with your disorder, makes me look at you with awe. I'm so sorry it didn't work out, but wow, to have even tried such a thing, for me, would make me feel a bit stronger. Hang in there, Pupplylove, and you did come to the right place. If anyone understands, it's those of us who are in the same boat. Hugs to you, Lindajoy

I'm right there with all of you. I get PAC's and PVC's every day, but when my "conditions" are acting up, I can get them pretty badly. I have mitral valve prolapse, and I've also had to have a heart ablation for dual pathway. My heart doctor said I have hundreds (possible exaggeration) of "potentials" all over my heart from which to throw irregular beats. No one really freaks out about my heart stuff unless I'm throwing quite a few ventricular things in a row. They don't feel good, though. In fact, they can actually hurt at times, they get so strong. Lindajoy

Hi, Issie. Yes, I've been tested for the mast cell issues, both Mastocytosis and Mast Cell Activation Disorder. I've been a member of a support group for Mastocytosis for many years. I've been tested very thoroughly for mast cell issues, by Dr. Castells and Dr. Weiler, plus other docs over the years. I've had the bone marrow biopsy twice, the blood and urine tests following reactions several times, and I've been on the medications, both to try and control symptoms as well as, as a diagnostic tool. I was on a mast cell stabilizer for six months and it didn't improve my symptoms. I was on another for a little while, ditto. Plus, I can do morphine, the most toxic mast cell destabilizer in the medication world, I'm told, with no trouble, so....mast cell has been ruled out. Ugh. I do take three antihistamines a day, plus am on a corticosteroid three times a day, for Addison's, that will also help with allergy. I'm still a mess when I eat. I appreciate your thoughts, though. Please keep them coming. I appreciate all leads! Lindajoy

Hi, everyone. I'm able to post again, so it's good to talk with all of you. I've been in the hospital for a week now, with my usual reactions to eating. I know you all are probably so tired of hearing about this, maybe as tired as I am of living it, but here I go again. Julie, I was reading your post with interest, about your visit with Dr. Abdullah. You sound a bit like me in that, you eat, and you go cold and shake. I do that, as well, as part of what goes on with me when I eat, but I then go to extremes, with all of the following, give or take a few of the symptoms: cold and tingly in feet and lower legs legs stiffen feet turn blue face turns red (I'm caucasion, so I end up red, white and blue. Just salute me when I have a reaction! ) I start to shake all over I may sweat I go into tachycardia (last one clocked at 185 bpm) blood pressure raises abdominal and lower back heaviness and pain that may go down my legs right leg may go numb and tingly (pinched nerve in back when this happens?) dry heaves / nausea may have some itching I feel fluish and weak and faint I can have other symptoms, as well, but those are the main ones. I have been thoroughly tested for anaphylaxis / mast cell by Dr. Weiler at Mayo in Rochester--negative. I've been tested for carcinoid and pheo--negative. I've been tested for porphyria and celiac--negative. The doctors at this hospital have been great. They think it's autonomic dysfunction and tried me on propranolol. I had a bad reaction--high bp, got angry, sweaty, couldn't sleep. So now I am wearing a clonidine patch. So far, so good. No better, but no worse, which is a good start. Do you all think this could actually be some form of Dysautonomia? They did orthostatics, and they were good. My bp goes up when I'm up. I still pool blood though, terribly, in my arms and legs. They're wanting to send me to University of Michigan or Pittsburgh for autonomic testing and care. Are these good places for that? I'm in Ohio, so any good docs to see for this would be great. I've been tested at Cleveland Clinic by Dr. Fouad. I was found to have POTS, but she doesn't do follow up care. I've seen Dr. Shields at CCF, but he's given up on me. Dr. Grubb is a year wait. Anyone else? Thanks, everyone. Lindajoy

Hi, Nina. Thank you, thank you, thank you. I got it. I really hope I can stay awhile! Have a great day. Lindajoy

LindayJoy, this is Nina (MightyMouse) checking to see if we have fixed your account settings.-Nina others, please disregard this post

test post

When I first got sick, I was tested for POTS and treated, but some of my symptoms didn't clear. It was found that I had Eosinophilic Esophagitis. I was treated with a swallowed corticosteroid pump spray, which worked for all of a week. Now, since I have to be on hydrocortisone daily for Addison's Disease, my EE is under control. I am one of those on here who can eat few foods. Actually, right now, I can eat no foods and am back on strictly an elemental formula. No one has been able to figure out why I react so badly to eating. I've been tested for the eosinophilic disorders and mast cell disease, to no avail. I'm now undergoing testing for myalgic encephalomyolitis. That can cause severe reactions to eating. Thanks for the information on EE offered. It's good stuff. Lindajoy

I saw Dr. Fouad at CCF in 2005. I was amazed that I was able to see her in two weeks of my call. I'm not sure, but I had an endocrinologist there, and they asked if I had a doctor already at CCF. When I said yes, I have Dr. So and So, they said okay, set me up in two weeks, and put that doctor down as my referring doctor. She's in a new area there now, so maybe she's building up more of a clientele and the wait is longer. I lucked out, I guess. Yes, Dr. Grubb is in Toledo. I live in Ohio and have never seen him professionally for my POTS. I asked him to talk to our doctors at our hospital years ago, and I listened in and spoke with him afterwards, but have never had an appointment. I know this is all mud, but wanted to chime in with my experience. I hope you can get in within a reasonable time when you do decide to call. Lindajoy