Sarah4444

I get terrible achy pain in my hips, low back and legs too. Since I have been reading about mastocytosis I am wondering if it's the bone pain they describe. I started on Cymbalta last Feb and the pain seemed better, but my OI symptoms got very bad and I had to stop it. I am now trying anti-histamines and sodium cromoglicate to see if it helps with all the symptoms. Apparently NSAIDs and opiates both cause mast cell degranulation, but some report getting pain relief from Percocet.

I have had terrible trouble with sleeping and even lying on my back at all. I have the head of my bed raised but if I tried to lie on my back I'd feel an awful tightness in my chest and throat. It seems like it might be getting a bit better since I started taking oral sodium cromoglicate dissolved in water before I eat. Over the summer I couldn't lie on my back at all and now I can tolerate it here and there, but still sleep only on my side.

When I tried Florinef I developed worse chest pain, shortness of breath, eye pain and mildly swollen eyelids. I am not sure if it was an allergic reaction to Florinef itself; now it seems that at the time I was in the constant anaphalxis that POTS/MCAD people experience, and I happened to start Florinef in the middle of it. The Florinef did seem to make the anaphalactic symptoms worse though.

Lots of people with mastocytosis also seem to have sensitivities and odd reactions to meds. Could this be one connection?

I am so sorry that your daughter is suffering. Whatever it is that she has, I think I have the same thing. I have been diagnosed with POTS, an Hereditary Disorder of Connective Tissue (overlap EDS/Stickler Syndrome) and am being evaluated for mastocytosis (in Canada they classify mast cell disorders a bit differently than in the US I think). I have been extremely ill but have had to do all the medical investigation and pursue all referrals and diagnoses with minimal medical support. I am most concerned because I think my 6 year old son is also starting to show signs of what I have, and the thought of him suffering like I have is almost too much, particularly when I am so sick I can hardly look after him. I have an appointment with a geneticist in December and I am going to try to beg him to help me sort some of this out before my son gets really sick. If I find anything out, I will let you know. I am feeling more and more strongly that the link among these three diagnoses must be autoimmune, but am too sick and tired most of the time to try to work it all out. I was going to post about this and try to arm myself with as much info as possible before I see him.

My whole family (me, husband, both kids) got the Twinrix vaccine in 2008 before travelling. Twinrix is the combined Hep A/B vaccine in Canada. I was already having health problems, but something seemed to accelerate my decline around 2008. I keep wondering about an autoimmune element to my POTS - is it possible to have an ongoing autoimmune process that is aggravated by trauma and stressors like vaccines? That would make sense with my illness experience and timeline. And make it really hard to make decisions regarding flu shots and other vaccines in the future, especially for my kids.

I understand how frustrated you are, I feel the same way. I often feel totally overwhelmed trying to sort out my own medical issues, trying meds on my own and seeking out specialists all over who may or may not be able to help. I did find an autonomic specialist and had a tilt table test in his lab to confirm that I have POTS, but he is very busy and I can't actually see him for a consultation until the end of January. I am currently taking midodrine 5mg. four times a day, and I have started taking anti-histamines and sodium cromoglycate to see if they help. If you would like to know the exact meds and doses, just PM me and let me know. I think they are helping a bit and hope very much that the mast cell specialist can help me figure out the mast cell issues and advise me about medications. The main reason I suspect mast cell involvement is that along with severe blood pressure crashes over the summer, I had skin itching, flushing, rashes that came and went, and other symptoms that seem to fit the mast cell/POTS profile. Have you read the article by Shibao et al? If not, let me know and I'll send you the link. Although I believe I have had symptoms for decades, I only recently figured out what was happening - I am new to this and still figuring things out for myself, but I'd be happy to try to help you any way I can.

I totally agree, and after 25 years of what I now know is dysautonomia I realize that if I want answers I will have to push for them myself. It is so hard, lonely and frustrating trying to figure it out on your own when you are so sick, but without a doctor to help root out underlying causes, what other choice do you have?

I also have rashes that come and go, skin itching and I now think I was having anaphalactic episodes all summer. I have a referral to a mast cell specialist up here in Canada. TLC's mom, are you able to direct me to any of the research going on about the link between mast cell disorders and POTS? I have one article (Shibbao? et al) but would love to bring more to my appointment if they are out there.

Hi casper - I am up in Canada and am running into the same kind of frustrations. I am also waiting for an appointment regarding mastocytosis. What makes it really hard is that it seems that many doctors seem to disagree about the issues related to mast cell disorders. It's also hard to find autonomic specialists here - I think we have two in my province, and I have an appointment with one at the end of January. I hope he knows something about this mast cell stuff and can help me figure out some of the connections, which symptoms are POTS and which may be anaphalaxis. The lack of medical knowledge and practitioners in these areas is so frustrating and makes all this even harder. Where do you live?

Hi Lieze - This summer when my symptoms were very severe I felt anxious and afraid as well. I don't think it's "just" psychological, instead I think it is part of the physical processes going on. So far I have a POTS diagnosis as well an a connective tissue disorder, but I suspect mast cell issues are involved for me as well. When you read about anaphalactic episodes they often mention feelings of fear and doom accompanying the other symptoms. It makes sense, because these episodes can be really dangerous, so our bodies probably have an emotional way of making sure we are paying attention. Since starting some meds for mast cell disorder I think I am starting to do a bit better - I am taking the antihistamines Mack's Mom recommends, but have noticed the most help from oral sodium cromoglycate, which I dissolve in water before I eat. I have no allergies that I know of, but have been having a lot of trouble with reactions to eating since things got bad. The anxiety is hard, because even if it comes from what your body is going through, it is compounded by that feeling of having to do a bunch of things that feel impossible when you are so unwell. Staring to make some sense of this, getting some relief from symptoms, and having lots of help so I can take some time off to recover and not have to force myself to do things even when I can tell it makes me sicker, all seem to be helping me a bit. I hope things turn around for you soon.

Hi Kayjay - I have been trying to avoid gluten too, although I have not succeeded in going totally gluten free. I think it does tie into POTS somehow for me, although I used to be able to tolerate it. My problem is that I am still at the stage where I can't stand up for long, and I either have to get myself something to eat quickly or wait for someone to get me something to eat. My husband and friends have been cooking for our family, and it's harder than usual to control what I eat. There seems to be gluten in so many things - can you suggest any resources that can help me find easy things to eat at this point that don't contain gluten?

Thanks everyone. Christy, I had terrible nausea for most of the past year. I started the MCAD meds (anti-histamines and oral and nasal sodium cromoglycate) earlier this month and for the first time in a long time my nausea is much better. I don't know if your son has tried this - the only thing worse than feeling like this would be watching my kids go through it. Hope you find something that helps.

I have been diagnosed with POTS, but don't have a follow up with the autonomic specialist until the end of January. I think I am one of the people with hyperadrenergic POTS and likely MCAD. I have also been diagnosed with a hereditary connective tissue disorder. I currently take midodrine and the MCAD meds. I am having an awful time trying to sleep. I have been trying to avoid taking another medication until I get a sense of how the MCAD meds I started are affecting me, but I can't keep going like this. Can anyone suggest a medication that is appropriate for hyper POTS, doesn't cause mast cell problems and helps with sleep? What has worked for you? I got so desperate early this AM I took diazepam, thinking it would at least help me relax and get some sleep. Strangely, it caused a significant increase in my back and knee pain, as did Celexa after just one dose, over the summer. I have taken both those meds in the past and now wonder if they were exacerbating my pain and I didn't suspect them because I didn't expect this effect, or if this is new. I seem to be reacting strangely to meds, which is another reason I have avoided trying something for sleep. I'd so appreciate any suggestions. Thanks in advance, everyone.

I don't know exactly what lets them know it's "just" POTS versus whether it's POTS on the way to something worse like MSA. I was first referred for evaluation for MSA, so I know how scared you feel, but was recently diagnosed by tilt table test with POTS. I also seem to very gradually be doing a bit better since starting treatment, but it's incredibly slow and variable, and so hard on everyone.

I also have a connective tissue disorder and have had lots of trouble after seeing chiropractors, and some massage therapists. After seeing one inexperienced chiropractor I had increased pain that never went back down to pre-treatment levels. Be careful. I have had more luck with an osteopath. Good luck.

Hi there - I won't be much help because I have just been diagnosed too and am still trying to figure this all out, but chest discomfort has been a big problem for me. At it's worst I had severe and worrisome chest pain, but generally I just have a really uncomfortable feeling in my chest and lower neck. I love your descriptors and find myself using similar strange images. I feel like mine is more like having a hard ball the size of a grapefruit stuck in my esophagus. I feel worst when I try to lie flat on my back. The feeling of being sucked into the earth has gotten a bit better for me since I started treatment. This is all so strange and frustrating - I hope you get some help soon.

Now that I know what is wrong with me and I have official diagnoses of POTS and a connective tissue disorder, I need to appeal my LTD application. Does anyone have any advice? I know that there is a right and wrong way to do this and am afraid with all the brain fog I'll mess it up. Are there any studies about how disabling POTS can be? I'd really appreciate any input on this one, I'll be in serious trouble if it doesn't work out. Thanks in advance, everyone.

Thanks, everyone. I think I have been feeling particularly stressed worrying about the genetic component of this and how it may affect my kids. I am going to try to take things in more slowly to adapt to my hypoxic brain. I really appreciate the support.

Hey Tia - I smiled when I saw your last post - I have been picking things up with my toes for years - my kids tease me about it and say I'm like a monkey. I was thinking more about this question, and I am wondering if it doesn't have something to do with how quickly you tend to make the motion of bending over and back up. I remember reading in one article (Dr. Grubb's?) that since our circulation doesn't adapt properly to going from supine to standing position we should take time when changing positions. When I bend over to pick something up off the floor I tend to do it quickly - maybe that's why it makes me feel terrible? Just an idea, anyhow.

Hi Benny - When I read your posts I was amazed by how many medical issues we have in common. I have had terrible back pain for decades, as well as symptoms that I now know are POTS. I am 40 and started having difficulties as an adolescent - silly of me, as POTS had not been officially "invented" yet. My mother is a physician up here in Canada. I also started to get migraines and thyroid problems in my 30s. I have just been diagnosed with POTS via tilt table test and have also seen a geneticist in Baltimore and been diagnosed with a connective tissue disorder. I live in Northern Ontario and have very limited access to doctors familiar with POTS so like many I am kind of doing trial and error largely on my own. I am trying the MCAD meds right now - have you thought about trying them? I really hope that since you have had a proper diagnosis and can access treatment that you have a positive outcome. I am discovering that treating POTS can be very, very challenging.

I don't know why, but I have exactly the same problem. One of the first things I should have noticed as I was getting sicker and sicker was that my house got terribly messy, while I usually liked to keep it somewhat tidy. I have two little kids, and now I realize I wasn't able to bend over to pick up after them. I still find it really hard to bend over and back up - and you're right, it's not that it really makes me dizzy, it just makes me feel really terrible. The geneticist I just saw thought I might have brain stem compression - maybe it could have something to do with this? If you figure it out, please let me know...

Hi Tia - If you don't mind, can you tell me more about the seizures you have lying down? I have very strange episodes at night, when I am asleep and sometimes when awake too, and I have been wondering if they might be partial seizures (maybe brought on by reduced blood flow to my brain caused by abdominal pooling at night after lying still for a few hours?). I haven't mentioned them to the neurologist yet because I thought the theory was too strange and I just started seeing her. Thanks in advance.

Sorry to hear you are having such a rough time. I also have to curl up in a ball in the dark after I get over-stimulated sometimes, and it's almost impossible to explain, and so frustrating that even doctors don't seem to know about this part of it. I think it's especially hard when we have little kids and we want to be doing things with them and we can't. Also, it's so hard to be there for their needs and wants when things are so challenging and unpredictable. Hang in there.

I used to be an intelligent, capable person. Now I am struggling to understand what is going on in my body, and most frustrating of all, what has happened to my brain. I just had a tilt table test, and my POTS diagnosis was confirmed. They are still waiting for bloodwork results, but I would bet I have Hyperadrenergic POTS - when I read the posts of those who have been diagnosed, my experiences are very similar. I was also diagnosed last week with a Hereditary Disorder of Connective Tissue - overlap of EDS and Stickler Syndrome. These add to my list of previous diagnoses: pituitary micro-adenoma, hypothyroidism, chronic pain, migraines... I suspect I also have mast cell involvement. Like many others here I have trouble sleeping and concentrating, so I spend many sleepless hours trying to figure how this all fits together to make me feel so awful. I read article after article and can't seem to retain the information like I used to be able to. I have increased salt and fluids, use compression stockings (is it true their effectiveness wears off with use/time?), tried and discontinued Florinef, take Midodrine, and the MCAD meds. I have noticed some modest improvement in symptoms - I am no longer bedridden, but hardly functioning either physically or mentally. Sometimes I feel like some of this makes sense to me, but other times I get so tangled up in theories. Is POTS fundamentally caused by blood pooling? If so, what causes the episodes people call "adrenal surges" that occur when I am lying down and/or sleeping. Is the pooling caused by lax veins (EDS), autonomic dysregulation caused by brain stem compression, some fault with the structure of my nerves, an auto-immune process, mast cell degranulation... I am overwhelmed by the number and nature of my symptoms, yet feel like if I don't sort them out and try to address their causes I might end up in worse shape than I already am. Also, I have gone from having doctors who are unable to figure out what is wrong with me, to having multiple specialists who have a variety of different suggestions about what I should try. The cardiologists/autonomic lab people want me to try beta blockers again, but I have read one shouldn't use beta blockers if they have MCAD (can anyone tell me why?), and I think that MCAD might explain some of my more unusual symptoms (itching, rashes, bp crashes while lying down...?). The neurologist has focussed on the dizziness and wants me to try domperidone - something about blocking Dopamine and helping Parkinson's patients with dizziness. The connective tissue specialist believes the autonomic symptoms are caused by brain stem compression and wants me to try wearing a collar. And I can't find an MCAD specialist in Canada yet, but am increasingly worried that I have symptoms consistent with lymphoma (my cousin was just diagnosed and while reading her information I became even more concerned). Whose advice do I take? My GP says this is all "over his head", but he is my only local doctor. Is anyone out there feeling well enough to try to help me sort some of this out? Is it true that hyper POTS people and MCAD people should avoid beta blockers? If so, why? More fundamentally, what is happening that makes me feel this way? Is cerebral hypoperfusion caused by pooling or blood being diverted from the brain by autonomic dysregulation, or something else? Is utter despair a POTS symptom? Gratefully yours, Sarah