juliegee

Angela, I'm currently being treated for MCAD and my chronic nausea/vomiting is so much improved. My POTS also seems better- HR and BP more stable. I was also getting severe headaches and horrible fatigue- all dramatically improved. Definately, meet with an allergist or dermo to begin testing to rule out this disorder. Julie

Oh Jacquie- I'm sorry you're going through this! I am quite interested in this thread as I suspect that I do have mast cell activation disorder and I suspect it is the cause of my POTS, chronic nausea, headaches, and fatigue. (I know you deal with chronic nausea, too.) I have had weird allergic reactions with hives ever since my autonomic problems have arisen. I've done the anaphylaxis series of allergy testing. I was allergic to nothing. I've had such severe reactions that I have used the epi-pen. I was very frightened as my heart was already beating so incredibly fast (I was close to passing out.) Epinephrine could horribly worsen tachycardia. Luckily, the epi-pen had the opposite reaction and actually STOPPED the horrible tachy. I immediately felt better, however the effect was relatively short lasting. I headed to the ER where my symptoms returned. I should have been put on an epi drip, but instead the ER doc insisted I was having a panic attack as I was panting (due to the fast HR.) What a horrible memory. Thankfully, I survived and have learned to manage all of this. I've recently had a horrible bout with hives all over my face, neck and a few on my trunk. I've been taking 150mg of ranitidine (an H1 blocker) in the AM & PM. I also take 10mg zyrtec and 10mg singulair daily with 25mg benadryl at night. On this regimen, my chronic nausea, headaches and fatigue are vastly improved. It is like a miracle for me! (I no longer need daily eyrthromycin as a prokinetic, nor zofran for nausea.) I still have POTS, but my HR and BP are much more stable. My allergist says that mast cells and nerve cells are very highly connected. Taking care of the hives/ allergic reaction has helped me in so many other ways. Jacquie, definately look into mast cell activation disorder. I also have to carefully watch my stress and activity level to ensure that I'm not overdoing it. That causes the hives to flare with all the rest of those horrible symptoms. Best of luck to you, Jacquie. Keep us posted on your progress. Hugs- Julie

((((((((Pat))))))))) Just a big cyber-hug. Julie

Hi Tammy, You could be describing my mother, too (and, her mother as well!) Yes, I'm convinced that mine is inherited as my son is also DXed with NMH and GI motility problems. His pediatrician at Hopkins, Dr. Peter Rowe, says dysautonomia is often familial in nature. Julie

PAT- WHERE ARE YOU???? I'M SHOUTING SO I CAN FIND YOU :-) Seriously, you haven't posted in a few days. Everything OK? Julie

Wow, that must have been a bit frightening! I'm sure you've worn an event monitor before. In light of your recent new symptoms, I'd say it's time to wear one again. Let your cardio know about this & request a new round of this testing. I don't know about you, but I always feel "safer" when I'm wearing one. It makes me feel good to push my button & know someone somewhere is recording and reading my arrhythmia. Silly, but true! Keep us posted on what you find out. Hugs- Julie

Oh Dear, Pat- Sounds a lot like what's going on for me... except mine does evolve into hives. I'm actually looking into mast cell activation as being the cause of my POTS. Sometimes, I don't get hives, I just look awfully suntanned, with really red lips. Since I've been on zyrtec, singulair, benadryl and ranitidine, all of my skin symptoms have gone away. My face is white again with pale lips. Surprisingly (and happily) my chronic nausea and headaches have also disappeared. My POTS symptoms are also much improved. I'm supposed to stop the anti-h's on April 26th after seeing my allergist. It'll be interesting to see if my symptoms return then. I'm going to ask for blood and urine testing to see if I have something more systemic causing all of this craziness. In the meantime, I'm thrilled to be as symptom free as I am. Consider taking a benadryl and see if the redness and heat clears up. If so, you've probably got some kind of allergic process going on. Keep us posted on your progress. Julie

Donna, I'm sorry you're still feeling so badly. People surely have a hard time understanding all of this autonomic stuff. It really hurts when family members are skeptical. Be specific and ask for what you need. Don't wait for them to offer. Weight gain is one of the reasons I didn't like florinef. It made me feel really good, controlled POTS symptoms, lots of energy, etc. But, it also made me feel really hungry, and my face looked really round. I'm almost 45- an age where I want to keep a close eye on my weight as it's so easy to start gaining when your metabolism slows down. I would definately talk to your doc about other options. I've never taken the proamitine, but I hope others can comment. I know Adderall is helpful to some, but I understand your concern about mixing too many drugs. I hope you have a good doc who can safely help you figure out a helpful combo for you. Are you well enough yet to try to walk a bit? Just a few steps around the house at first, then a few steps in the yard, etc... Some exercise may help you start losing that weight and also help with your mood. If you can't walk yet, spend some time outdoors. Just being outside can be so lifting. Set yourself up in a cozy recliner and rest. I hope your teens are making life easy for you and behaving :-) Hang in there! Julie

Thanks for your comments, everyone. I wondered if this was also common in the general population. I may start asking friends- they'll probably think I'm a lunatic :-) Flop, I need to add a formal signature to my posts. My son is DXed with NMH- among a few other things. I have POTS. I'd love to hear from a few more. Does EVERYONE with POTS experience this? Thanks- Julie

Hi Guys, I've had this all of my life. I almost faint every time I bend down to do work, i.e gardening, cleaning baseboards, etc. When I stand back up, I start to black out. Everything goes gray/black, sound goes away...and then I come back. I've never actually fainted from this, but I'm definately experiencing presyncope. When I force myself to finish a task, (like my son and I recently stained and whitewashed a stack of boards that were lined up on the floor- constant up and down) I try to relax and enjoy the dizzy ride. If I just bend my knees, like to do squats (with head upright), it doesn't happen. It only occurs when I lower my upper body/head down down to the ground. Is it just me or do others have this same symptom? I spoke with my son about this. He's agreed to help me clean baseboards for a fee ;-) He said, "Oh yeah, I had that before florinef- it's gone now." I'm curious to hear your comments. Julie

For my son, Lexapro has been a miracle drug. It has been very helpful. He had been getting very anxious prior to a BP drop. It's taken all of that away, it's increased his appetite, and the vasoconsticting effect has helped stabilize his BP. That being said, acclimating to it was very difficult. Mack would get severe headaches with vomiting within 30 minutes of taking it. He had to lie down very suddenly, couldn't tolerate any light, and would sometimes vomit. His PT theorized that he was soooo low in serotonin, that his body "freaked out" at the sudden addition. I think he began with 5mg for a week, then 10mg, now 15mg, titrated slowly. I'm so happy Mack stuck it out because the negative symptoms slowly abated within a week to 10 days. We know how effective Lexapro's been because Mack accidentally forgot his dose recently. He was so lightheaded and sleepy the following day. It took him a week to re-stabilize. Now, if your body needs to re-acclimate each time you begin taking it...this definately won't be worth it for you. Especially, if it's been prscribed for 2 weeks on, 2 weeks off. I think it'd be much more effcetive to take a low dose all of the time if you find it helpful after this horrible acclimation period. The allergy thing might render this whole conversation mute! Talk to your doc as soon as possible- maybe his nurse since your appts. so far off. I'm just sharing my son's experience. All the best- Julie

Constipated? I can't imagine there's a link there.....Unless your muscles are so sore, you are tensed up, and can't relax enough to go- might be a stretch. I found it really hard at first. I was very sore. I'm used to it now and now and no longer get sore. I find it helps with range of motion. Some with dysautonomia have movement restriction and Pilates certainly challenges and expands that. As far as fainting, I'm usually good, as most of it is floor work. I'm prone, more blood to the head ;-) Julie,

I know you have a really high HR and are Dxed with POTS. Are you also DXed with NMH? Sure seems like you have that, too. That's when your BP precipitously drops out. Many have both. Treatment for both is pretty similiar. And, I definately agree that messing with your florinef dosing must somehow be involved with your new fainting spells. Florinef increases your blood volume. Coming off of it must be lowering blood volume and contributing to the subsequent faints. Since your symptoms are so dramatic (and frightening!), could you arrange for your cardio and neuro to conference re. your new symptoms and meds? I would assume that your PCP would acquiesce to their expertise. I'm so sorry this is happening to you. I'm keeping you in my thoughts and prayers. Hugs- Julie

You're right, Morgan. Different prokinetics work differently for all of us! I think because erythromycin has such a significant impact on the GI system is the very reason that it works. When taken in tiny pediatric doses, (1/4- 1/2 tsp.) it actually irritates the tum and small bowel into emptying more quickly. Many GI's prescribe too high a dose, which actually causes more nausea. Last thing we need! It takes some experimenting to find the dose that works for you. But, with "E", I've found that less is more. Julie

Pat, Do a search on this site to read more extensive comments re. reglan. I've hung around the Yahoo International Gastroparesis for a few years now for my son (and now me) and reglan is widely considered to be a BAD drug. Yep, it works, but the side effects can be horrendous and some linger after use is discontinued. My son took it for 5 months and had horrible anxiety and couldn't stop moving/ really hyper. Have you considered domperidone? It is not FDA approved, nor available in the US....not because ot is an unsafe drug, but because it wouldn't be profitable to be sold here. It is sold OTC in many parts of the world and safe enough to be given to women, who are breastfeeding. It works like reglan, but does not cross the blood/brain barrier. Many experienced GI's and motility specialists recommend it to their patients. I'd be happy to share with you some ways to obtain it safely. Also, have you tried tiny pediatric doses of erythromycin (sweet pink liquid). It does wonders for both my son and I. A 1/4 to an1/2 tsp before eating can turn that horrible nauseous feeling into real hunger. I wish you the best of luck with your decision. Julie

Hi Tessa, I was told that anything below 90/60- with symptoms- requires attention. You certainly qualify. Have you see your doctor recently? I definately would. Keep us posted on your progress. Julie

((((((((((Cardiactec)))))))))) Feel Better- Julie

Hi Pat- I don't take domperidone, but may have to start as I'm beginning to suspect these hives I've got may be related to my erythromycin &*%$#@! And the "E" worked so well for me! What prokinetic are you taking now for your gastroparesis? I never did the antroduodenal manometry, but my son did at Johns Hopkins. It is a pretty difficult test. They knocked Mack out with general anesthesia and threaded a small tube with manometry probes through Mack's nose, down his throat, into his tum and small bowel. Then, they sent him to his room to "hang" for 24 hours. They didn't want him to eat small meals, but rather several "large" ones. We had a log to keep where we recorded everything he ate or drank and even his trips to the bathroom. The manometry probed read the contractions in the throat, stomach, and small bowel. It can help differentiate between muscle and nerve involvement and can pinpoint exactly where the problem is in the GI tract. Mack tolerated the tube pretty well. He had to do a TTT with the probe in place. That was tough, especially when he barfed and vomited with the probe up his nose- awful! Pat, if you are already DXed with gastroparesis, I wouldn't think this test is necessary for you. Mack had a "normal" GES and we were trying to figure out WHY he couldn't eat. He was DXed with NMH that caused an autonomic neuropathy of his small bowel. His GI DX was: an intestinal neurogenic dysmotility. Are you able to eat OK? How's your nausea? Julie

Can you send one to me, too- Poohbear. I live in GA and would love to find a great POTS doc. Julie

Hi Tammy, I had this done last time I was in the hospital...I think my GI was checking for Addison's. I didn't have it. The test was absolutely simple- a big nothing. the drug didn't phase me in any way. Julie

Hi Bronwyn, You are a font of information and I really appreciate it! I've taken something like your Ketotifen....Doxepin here. It's not the same thing, but I had the same reaction you did. It stopped the hives (taken with all the rest of the anti-H's,) but it caused me to put on serious weight. and it made me really sleepy. But, I took it at night so that was OK. I still have some around here....that may be my next step. I've been putting cortisone cream on my face. Wow! that really helps, but others have mentioned that it's not good to use on face skin...oops. I need relief somehow. I also have an autonomic neuropathy afecting my tum and bowels- they don't work without meds now. How do you know yours is an autoimmune autonomic neuropathy? Dumb question- sorry. I'm also sorry that you're not able to control all of your symptoms and things are getting worse for you. These hives are intermittent for me, but chronic and they drive me CRAZY. I can't imagine having to deal with this all of the time. You are a dear, Zoogle, and remain in my prayers. I may have more questions for you as I progress with testing etc. to get to the bottom of things. Hugs- Julie

I had compazine by IV once in the hopsital. It caused crazy restless legs and arms (!) for me. I was thrashing about until I got a big injection of benadryl. Everyone reacts differently.....just be careful with your first dose. Hugs- Julie

I agree with Amby. By sheer numbers alone, your son has POTS. His HR went up over 30bpm. My son also vomited during his TTT, right before his BP dropped to nothing. Did your son have a corresponding BP drop? If so, he may also have NMH. Even if he didn't, the POTS alone can cause that horrible nausea/vomiting. Your daughter also had a very dysautonomic response....I'd definately ask for a read out from her test. You can see for yourself is her HR went up more than 30BPM or if her BP flucuated horribly. Where did your kids have the TTT done? A friend of mine had her child's test done at a very prestigious hospital in Chicago. The docs claimed it was "normal," despite his horrible symptoms. She took her child to Mayo, where the docs didn't even have her son repeat the TTT as his HR jumped mpre that 30BPM in the office during a consultation. It is vital that the doctors have an understanding of POTS/NMH before they do the test. All the best to you. Hugs to your kids. They were really brave..and how hearbreaking to still not have a DX. Keep searching for answers, MOM. Julie

Flop, I'm still sending prayers your way. just wanted to mention that I've had headaches where my left arm is numb, tingly and a bit slow. It always passed in a few days. Hope your problem is as benign. Get better. Hugs- Julie

Oh Dear, Melissa! I hate that this is happening to you. I am praying really, really hard, dear friend. You so don't deserve this. Trust in God and know how much you are loved. Julie