juliegee

Oh Katie, Thank you for letting us know about Flop. I wish I had medical advice for her...I don't. I will just pray that this condition is a temporary inconvenience. Please let her know I am thinking about her, praying for her and sending good wishes across the pond. Julie

Rachel, You mentioned the EDS, so I won't. That may be the gentic unerpinning underlying all of your DXes. But, it also seems clear to me that you've got chronic fatigue syndrome, CFS, at least by Dr. Peter Rowe's standards. He's the doctor treating my son at Johns Hopkins. You didn't mention, but are you still having stomach issues? If you are, I will give you Dr. Rowe's prescription for CFS (with stomach issues.) He asks all patients to try a 2-3 week period of a totally dairy-free diet. No milk protein at all. It's tough at first. If it helps, even a little, make it a permanent change. It may help with nausea and stomach acid, but it may also lessen inflammation throughout the whole body. And, Dr. Rowe's a huge advocate of a special type of physical therapy called manual therapy. Google it to learn more about it. He DXed my son with NMH and CFS a few years ago. Mack is much, much improved on this therapy as well as: salt, fluids, meds, etc.) Mack doesn't have EDS like you might. Also, as weak as you are, you are probably quite deconditioned. I would think that trying to exercise a bit, and then a bit more each day, would be a huge benefit. The heart is a muscle, and you know what they say about use it or lose it. If you can only walk a few steps. Do it. the next day a few more, etc. Keep a journal to keep track of your progress and your body's response to exercise, dairy-free, etc. I know you were looking for possible causes of your dysfunctions to bring up at your doctor's visit... I just couldn't help sharing with you the excellent advice we got that has been so effective. All the best- Julie

Hi Bronwyn, Thank you so much for such detailed information. I sincerely appreciate it more than you'll ever know. In the past, my allergist has ordered blood work and I don't think my tryptase levels were elevated. In mastocytosis, you say it is ALWAYS elevated; therefore I am guessing I don't have it. But, mast cell activation disorder sounds like a possibility. (Do you know how that's treated?) During this last outbreak, my nausea, headache and fatigue were awful. I could barely function. Once I added the zyrtec and singulair to my ranitidine and benadryl, I felt markedly better. To answer your questions, during this last attack, my low BP and tachy were worse than normal. Standing for just a short time triggered this, but sitting or lying down relieved it. (As did the antihistimines.) And, my hives come in all varieties. Some of my hives turn into dark permanent dark freckles. Some look like large (boulder size-as in marbles:-) boils. Some are more traditional hives like bug bites and itch like the dickens. Yes, if I touch or scratch, they enlarge and redden. The interplay between autonomic problems and mast cell problems seems difficult to untangle. As long as you keep on your antihistimines, does your POTS, etc saty under control? Did you develop this as a child or as an adult? One last question, my Mom and Grandmother also suffer from hives and orthostatic intolerance. Do mast cell problems tend to run in families? Thank again, Boronwyn, you're an angel! Julie Hi Julie, I have Systemic Mastocytosis which was diagnosed by skin, bowel, & bone biopsies. Most docs would normally do blood & urine tests first to see if there is increased histamine (urine) & tryptase (blood). In Mastocytosis histamine & tryptase are elevated all the time but in a condition called mast cell activation disorder histamine & tryptase are only elevated during an attack & for a few hours afterward. Mastocytosis is actually very rare but mast cell activation disorder is more common. Severe headaches, nausea & diarhea are some of the most common symptoms in mastocytosis, but these symptoms also occur with mast cell activation disorder & allergies. Do you get flushing & tachycardia (tachycardia persists even when lying down) Itching? Are the spots/hives there all the time or do they go away completely? There are several types of skin lesions in mastocytosis but they do not go away entirely even with daily use of strong cortisone creams. If you scratch the spots do they swell up & get really red? The skin biopsy they do is called a punch biopsy, its not huge but is quite deep so has to have one stitch. The bone biopsy is very painful. I recommend you demand the blood & urine tests first before you even consider a skin biopsy. Hope this helps, I'm happy to answer any other questions you have, Bronwyn

Hi, I have a question for anyone DXed with mastocytosis (or for anyone who may know.) I recently and periodically break out with hives even though I've never tested positive for any allergies. With my last out break, I was also very nauseous and had a severe headache. Does this sound like mastocytosis? Once I began with my many antihistimines, the hives, nausea and headache subsided dramatically. I also have POTS and GI motility issues, but the nausea was much worse than normal and not responsive to my normal prokinetic and zofran. Also, I have tried to read everything I can about mastocytosis and the images often display really dark spots/hives. Mine are flesh colored, maybe a little reddish. Sometimes, they turn into dark spots after they heal. Does any of this sound like it could be mastocytosis? Is a skin biopsy the only way to know for sure? What does this entail? Thanks in advance for any info. Julie Julie

Thanks Flop and LThomas for all of the info. I've long thought that my hives and POTS are related, but haven't been able to connect the two. I'm frustrated! Julie

Jacquie, Sorry the nausea is still so bad. I've already written to you about this, so disregard if I'm boring you :-) But, another possibility could be an intestinal dymotility. In POTS patients, this is almost always neurogenic (caused by nerve damage) in nature. An antroduodenal manometry can confirm, but it is very specialiized and only offered at a few hospitals. This condition has the same symptoms and treatment as gastroparesis. Basically, instead of your stomach emptying slowly, your small bowel empties slowly. The food still backs up and causes extreme nausea. The nerves in the small bowel misbehave and don't work together effectively to move the food along. Trying a prokinetic like erythromycin or domperidone is the best thing you can do now. My son and I both use erythromycin. We take the liquid form, sweet pink stuff, just 1/2 tsp before meals. It takes the nausea and replaces it with actual hunger. It is very inexpensive and benign. If it works- chances are you DO have a motility problem. All the best, Julie

Thanks, everyone for your suggestions. I'm probably doing a no-no; but I've had to break down and cover my face in cortisone cream. It feels so much better and it actually helps the bumps go down. I hope just a few applications won't do too much damage. If I didn't do this, I think I'd be looking at some scarring. It's really bad. I'm taking ranitidine, benadryl, zyrtec and sigulair and it's helping somewhat. I hope my allergist has a few more tricks up his sleeve. MKoven, you make me laugh. I was ready to sit on a cold washcloth, wondering how that was going to help my face:-) These hives seem to be linked to my autonomic stuff... so far that hasn't acted up any more than usual, but I'm certainly on the alert. Once, during a awful hives outbreak, I got the worst tachy. I actually used an epipen because I thought I was having anaphalaxysis. It helped so maybe I was..... Every time my allergist does allergy testing on me, I'm allergic to NOTHING. Then why do I keep getting these horrible hives? Julie

Hi Elizabeth! We previously met on the Pediatric Network Forum for OI, FM, and CFS. It's great to see you here. I'm Mack's Mom. He's 14 y/o and doing so much better. He also had motility problems and an OI- NMH. I see that many have referred you to Dynakids, which is great, but there is no place on that site to offer support/information to parents. The only forum is for the kids themselves. My son, a typical boy, was never into communicating with others with the same illness. He'd much rather play PS-2 or skateboard when he could! At 7 y/o, I doubt Braden will be into the forum either. That being said, I'm sure you can peruse and glean some useful information from the site. The best thing that I can recommend for Braden is to try to get help from a major teaching hospital, like Johns Hopkins or Mayo Clinic. We did that for Mack. And the docs were so wonderful. We rarely had to travel there. Much was done here at home via phone calls and E-Mails. I forgot where you guys live, but feel free to PM me here and I'll be happy to hook you up with the doctors at Hopkins. We started with a pediatric motility specialist, who was able to open the door for Mack to see Dr. Peter Rowe there. Dr. Rowe has been a gem, guiding Mack's treatment, even though we've only met him once. All the best to you- Julie

Seriously, they'd be hidden on my rear end. The itching is driving me crazy. Since my worst POTS flare, I've had hives on and off on a continuous basis, usually on my thighs, armpits and belly. I take benadryl at night and zyrtec and singulair during the day. The meds help control things. But, this time, the nausea is so bad. Anyone else had anything like this? Does this sound like it could be mastocystitis? Julie

Wow, guys- Thank you for all of the responses. I appreciate your frank insights. For the record, I don't believe that I caused my POTS. The genetic component is too strong in my family, with my grandmother, mother, myself and son all affected. (I can just hear some new-age quack saying, that's because you all were reared in a similar environment (not true!) and suffer from the same cognitive distorters.) I really do believe POTS is basically physiological in nature. I apologize if this topic offended anyone. The concept of blaming the patient, frankly, greatly offends me. But, it was interesting to read all of your ponderings. The push and pull between physiology and psychology is interesting to explore. I suspect that all of us were born with a genetic predisposition towards POTS and various traumas in our lives (illnesses, surgeries, accidents, childbirth, psychological traumas, etc.) pushed us over the edge. For what it's worth, I don't think any of you caused your POTS either. I am daily awed by your (collective) courage and strength. Rachel, I, too would love to see how my PT would change his tune if he were to become stricken ;-) Julie

Hi All, I know this will be controversial and I'm struggling to stay open-minded about this....Part of my son's regimen (recovery from NMH/CFS) has been receiving Integrative Manual Therapy. This was strongly recommended by Dr. Rowe at Hopkins. I've been trying it and it really seems to help. The physical therapist that we use (whom I respect) has suggested that people suffer from illness because of dysfunctional thought patterns. of course, this infuriated me! It smacks of "blaming the patient." I asked about cancer patients. He said that they are the most inflexible, close-minded group that he has ever worked with. (Forgive me, those of you who may be suffering with or surviving cancer- not my theory!) My graduate and post-graduate work is in counseling so I've been exposed to this idea before- mostly from holistic practioners. Once I got over my anger.....I pondered this theory. There was a time when I was healthy and unbothered by POTS... It started rearing it's ugly head following traumatic periods- physically and mentally in my life. It makes me wonder if life's demands (and my response to them) could be playing a part in all of this. An autonomic dysfunction is a deregulation of the things that are supposed to happen automatically in the body. But, in our case- this automatic system goes haywire. Did I get too far away from my body's natural rhythmn? Was I not listening to what my body needed? Did I try to help and please everyone else at my own expense? Did LIFE (and my response to it) make me this way? Mulling this concept has caused me to listen to my body's needs, focus on my HR and breathing and take more time for myself to exercise, etc. Most of us are women and we are the caretakers of our families. Do we neglect ourselves at the expense of everyone else? Just something to think about...if we caused our own illness, do we also have the power to cure it with our own thought patterns? Next time I see my PT, I'm going to ask him about premature infants and kids born with cerebral palsy. Did THEY too cause their infirmities??? Let me know what you think. Julie

Hey Lina- My son is going through the same thing right now. He is being treated by Dr. Peter Rowe at Hopkins. Mack has been on .2mg for several years now. Out of the blue, his BP has suddely gone high- around 150/90. Dr. Rowe advised dropping the dose by 1/2 immediately for one week while monitoring BP. If it doesn't return to normal, he's to reduce it by 1/2 again for another week. All the while, he's supposed to drop his Thermotab and salt intake proportionately. And, drop his potassium supplement as the rest lowers. We've also got orders to check electrolytes along the way. He's been on .1mg for 4 days now and I've actually gotten a normal BP reading finally! I'm going to keep a close eye on things while we determine what new dose he needs to be on. BTW, Dr. Rowe definately thinks this is a GOOD sign of improvement in my son's case. YEAH!!! I hope the same is true for you. If you're uncomfortable going cold turkey, you might want to share Dr. rowe's advice with your cardio. Let us know how it goes. Oh, I just wanted to add, I agree with Nina- 4mg is a CRAZY high dose:-) Julie

You've gotten excellent replies from everyone. I'm also a fan of the mayoclinic.com site that Dayna recommended. Search for "autonomic neuropathy." It lists every bodily system that can be involved and how. It definately connected the dots for me. My son's GI troubles have been attributed to an autonomic neuropathy and my docs are assuming the same is true for me-even though I haven't done all of the testing. We're taking the same meds and they're helping us both. Julie

You may want to look into interstitial cystitis. I had a several year bout with this almost 20 years ago. It's really important to find a good urologist, who is knowledgable about this. The fact that your urinalysis is coming out clean and you're still having symptoms is a clue. Do a serach on this site as I'm fairly certain thare's some correlation with autonomic dysfunction. I feel awful for you. I remember how horrible that felt. I'm sure there are drugs to help you feel more comfortable now. I did have to take an anti-B for years to address the issue. A cystoscopy should help the doc determine if this is really what's going on with you Julie

Yep, this happens to me too. Today after lunch, as a matter of fact. I was shaking cold and my finger nail beds were dark purple. Weird. Not sure what it is. It doesn't always happen... Julie

I, too, have difficulty swallowing when all of my symptoms are flaring. When my motility is bad and I'm really nauseous, it's particularly bad. And, when I'm having lots of episodes of tachy and my POTS is acting up, I also have trouble with swallowing. I'm not sure WHAT it is. I know that the entire GI tract can be affected by a neuropathy due to the autonomic dysfunction- not just the tummy and bowels. I've always attributed it to that. I purposefully stay very calm and relaxed when this occurs as it's rather frightening. Relaxing and "riding it out" seems to help. I'd love to find out more about this. All the best! Julie

((((((Donna)))))) Julie

YEAH!!!!!!!! Hugs- Julie

Jacqie, I really feel for you... we went through this with my son. I have since learned that the GES is notoriously unstandardized and subsequently unreliable as it only shows you what your tum is doing during that particular period (like a snapshot.) As someone else mentioned, the 4 hour test is considered to be more reliable, but it may be hard to find a hospital near you that does it. My son's GES was also "normal" despite the fact that he was unable to eat any of his radioactive muffin (as he was too nauseous!) He only drank radioactive gatotade- no solid food. The tech still considered the test valid. I was so frustrated as he had lost 20lbs and was close to needing a feeding tube at that point. After seeing his "normal" results, his GI suggested that he was emotionally disturbed! I took him to see a pediatric motility specialist at Johns Hopkins who was able to difinitively identify his GI motility problems via a specialized test called an atroduodenal manometry. Mack was DXed with intestinal dysmotility (symptoms & treatment identical to gastroparesis.) The test revealed that Mack's GI motility issues were caused by nerve damage and definitvely linked to his neurally mediated hypotension. Your next question for your GI needs to be: "So what are we going to do about my chronic nausea?" I would definately recommend trying a prokinetic, like erythromycin or domperidone (NOT reglan!) to see how you respond. If you feel less nauseous and are able to eat better- Voila!- chances are, you've got a motility problem. Try zofran to help with the persistent nausea. And, other comments here are right on the money. By most effectively treating your POTS, your nausea will dissipate EVEN if you have a motility problem. Chances are that your motility problem is caused by a neuropathy of your GI tract. According to Mack's doctors (and his progress!), this can be reversed as the underlying autonomic dysfunction is addressed. I feel so badly for you. I have a motility problem, too and live with intermittent nausea. It's awful! Try a prokinetic and keep treating your POTS. Hugs- Julie

Oh Melissa, I'd throw rocks with you (or for you!) if I were there. YOU contribute so much here, and have much to teach us all. I'm so appreciative. Big Hugs- Julie

Wow- So many of you have been through so much testing! My doc DXed me with Raynauds based on symptoms alone. Initially, before I even knew I had POTS, my feet would occasionally get covered in painful tiny blisters, called chilblains. My feet would often get really, really super cold and I would be unable to warm them. Stress (or simply the feeling of having too much to do in too short a period of time) seems to exacerbate this for me. Sometimes submersion in warm water (and relaxtion) can bring the feeling and color back to my feet. A few years ago, I had a really frightening episode where one of my fingers turned blue/black and wouldn't pink back up. I ended up hospitalized for several days with what the docs called an ischemic finger. I had the numbness you describe and no matter what I did, I couldn't get blood back into that finger. I suspect that POTS predisposes us to Raynauds. We often have blood pooling in our extremities. If our blood vessels also clamp shut (for whatever reason) we present with Raynaud's symptoms. It seems really common with POTS patients. All the best! Julie

Welcome Bronwyn! I think you will find several members here who suffer from POTS and mastocytosis. I've also had some weird allergy stuff (skin erruptions, etc) and have wondered about mastocytosis. I look forward to seeing youpost and learning from you. Julie

I agree with you, Emily! This is a complicated and confusing topic. The relationship between OI and CFS has yet to be conclusively established. And, from my understanding, diseases/conditions like Lyme and Gulf War Illness, etc. can often lead to OI's and symptoms very much like CFS. My understanding of Dr. Rowe's CFS/OI chart differs from your interpretation, Emily. I was trying to figure out if my son met the criteria for CFS when Dr. Rowe pulled out his "handy"chart. He said that anyone with an OI and several (?) of the other contributing factors: depression, anxiety, food allergies, inhalant allergies, asthma, infection, movement restrictions, chiari type I or c-spine stenoisis, EDS or pelvic venous incompetence meet the criteria for CFS. He seemed to indicated that the more contributors that one has (in addition to an OI) the more conclusive the DX for CFS AND the more severe the case. Keep in mind that my child had an OI, and that may be the reason that Dr. Rowe used THAT chart. I have also read some other information attributed to Dr. Rowe that indicates that NOT everyone with CFS has an OI, which certainly seems to contradict his "handy" (or now confusing:-) chart. I recently read the article that Dr. Rowe and several colleagues published in the mid 90's, which indicates (based on that particular study) that 70% of CFS patients had an abnormal tilt table study and 90% of patients with fibromyalgia (FM) had an abnormal tilt. I understood that Dr. Rowe was one of the first reasearchers to more conclusively link OI's with CFS and FM. Emily, You seem to be interpreting that same study to also say that Dr. Rowe was also able to positively identify several patients with CFS and FM, who DIDN'T have an OI and you are correct. However, I think his emphasis has always been on studying the connection (which clearly isn't always present) between OI's and CFS/FM. We may simply be interpreting the same study differently. I apologize if I misled anyone with my info. It is VERY confusing and even the experts out there haven't come to any formal consensus. Regardless, I am very grateful that we were lead to Dr. Rowe. He has been able to help my son, and subsequently me, when none of the doctors here locally in northeastern GA were able to help us. I am also very grateful to have found this site with so many other fellow sufferers. I learn so much from you all daily even though I don't post too often. And, (finally) I am grateful to have met you, sweet Emily. You contribute so much to the site and keep us all on our toes! Thank you. Julie

Oh Melissa- I pray you find a new "normal" and things calm down for you. You deserve peace, happiness and light! Sounds like that tum of yours is not happy with your attempt at "rehab" with tube feeds. Any evidence that it's really helping that small bowel? I pray you figure it out with a minimum of pain and misery. Heal, sweetie. We love and need you here. Big Hugs- Julie

I'm sure that this is NOT a concern for you (especially since you only noticed the saltiness since upping your salt intake), but thought I'd mention it. Salty tasting skin is a symptom of cystic fibrosis. Julie