Sarah4444

Hi Heiferly- My joint pain has always been blamed on mechanical causes - I have injured both my back and knees in accidents, so my doctor has just assumed that is what caused the ongoing pain. However, now I am wondering if the pain is part of the dysautonomia, at least to some extent. I was just officially diagnosed with POTS two days ago, but after strange symptoms I have had for decades, figured out for myself that I had it in the spring. My family doctor doesn't know much about it and hasn't sent me for any tests - he will order bloodwork or make referrals if I ask, but doesn't take any initiative to help me figure any of this out. I think he is waiting for specialists to give him instructions and guidance. I just don't know enough about POTS to know what to request in terms of tests, etc. Sorry I can't be of more help, but let's keep in touch in case one of us has some luck with this. I am actually on my way to Baltimore to see a connective tissue disorder specialist, so I'll be offline this week.

I get pain like that in my legs too - it comes and goes and I can't predict it. The closest I can come to figuring out what is causing it is MCAD - when I read the symptoms of mast cell disorders on the Mastocytosis Society web page I found I had about 95% of them. One symptom they list is bone pain, and that is the closest description I can find for my leg pain. I also get joint pain in my back, knees and hips and also inflammatory pain, but the achy leg pain is different. I have just started to try the MCAD medications to see if they help. Good luck.

Thanks for the replies, everyone. With regard to anxiety, I do find it stressful to get so little sleep and to wake up very early knowing how tired I'm going to feel, but the physical symptoms seem to happen in my sleep and then wake me, so I don't think anxiety is starting the process. I also find that during these times I have to lie on my right side - lying on my back or left side make things worse, but I can't figure out why. I do have the head of my bed on two two by eights - how do you get your bed higher than that, or do you prop up more with pillows? And no, I haven't had a sleep study - I don't know if they do them in my community and my ability to travel is very limited. Have others had sleep studies and found things that helped?

After reading this thread I have so many questions - is mitochondrial disease a metabolic disorder? Exercise seems to make me feel worse in the short term, but forcing myself to continue seems to correlate with mild improvement so far; however, at the same time I have added medications and other changes - how do you know if exercise is helping or hurting overall - do things become clearer with time as symptoms improve a bit? Also, I keep reading about the panic and fear that people experience during POTS flare-ups, and I feel those as well. Of course it's pretty normal to feel those emotions in this context, but I can't help feeling that it somehow seems almost as if some part of the brain responsible for sensations of well-being becomes so oxygen-starved during severe episodes that it adds to the negative sensations.

I have never been a good sleeper, but since my dysautonomia issues have gotten severe I can barely sleep. I have trouble falling asleep, take Benadryl and usually end up going to sleep around 1 or 1:30. Then, 3-4 hours after I fall asleep I wake up sweaty, feeling terrible - short of breath, heart racing and pounding, nauseaous - and then usually have urgent diarrhea. Can anyone tell me why this is happening and if there is anything I could do to get more sleep? I often can't go back to sleep after these episodes, or like this morning I fall back to sleep and then wake feeling like this several more times before I have to get up to try to get my kids to school (all I can do in the mornings now is sit on the couch and try to supervise their morning routine without being too miserable). My mom thinks that my sleep/night problems may be caused by blood pooling while I am still, which leads to - what? A drop in bp? Is this episode similar to what people describe as an "adrenaline surge"? I'd really appreciate any insights and suggestions you might have - thanks.

I have had trouble taking showers for a very long time now, but after starting Cymbalta in February of this year the episodes became more severe, much like you are describing. I stopped Cymbalta and the "I'm going to die right now" episodes stopped, although I am still housebound and unable to look after my kids. Sarah

Can I ask where you read the posts re perimenopause? I have had episodes like the one you described, including the odd-smelling sweat. They started when I was in my late 30s and my endocrinologist does not believe they are related to menopausal symptoms. I usually had tachycardia issues as well.

Thanks Jana. I think you are right - my need to travel to see the doctor seems worth the risk. With universal medical coverage like we have up here I am not used to feeling uninsured and exposed. I appreciate your reply, and hope you are doing ok.

I have had similar heart issues and finally got one of the flutter-then-tachycardia episodes whilt I was wearing a cardiac loop monitor. The cardiologist said it was a "heart block" or conduction disorder, apparently having to do with P waves or something like that. If it happens all the time apparently they recommend a pace maker, but with occasional episodes he uses beta blockers. My episodes of heart block have become much less frequent since I started the beta blocker (very low dose), but I have to go off my meds for a TTT next Friday, so I am wondering what will happen - sometimes these things seems to come and go and taking a med at the same time feels like it might be a cooincidence rather than helping or causing a symptoms, if that makes any sense. My heart problems got much worse when I tried Cymbalta, and I had increasing GI problems at the same time. I am now going to try Sodium Cromoglycate (sp?) to see if trying to treat underlying mast cell trouble might help the whole cascade. Good luck. Sarah

I have an appointment with Dr. Francomano in Baltimore in mid-October, and I just called to try to arrange medical travel insurance (I am Canadian). I was informed that there is a three month "stability clause" that specifies that one needs to have a three month period with no changes to symptoms, treatment or medications for a particular medical condition for it to be insurable. I have not been officially diagnosed with anything yet, but have been put on midodrine and beta-blockers within the last three months. I was told that if anything happened relating to my heart while I was in the States it would not be covered by insurance. I was hoping to be able to travel to the US to see some doctors who know about POTS, but don't feel like I have been medically "stable" for three hours in a row, let alone three months. Is that even achievable with POTS/dysautonomia? Does anyone have any insight into or experience with this problem? How am I supposed to travel to see doctors who might be able to help when the condition itself prevents me from getting medical insurance? Nothing seems to work these days.

Julie, here are the two articles that mention the link between POTS and MCAD and seem unclear about which comes first: http://emedicine.medscape.com/article/902155-overview http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/ If you don't mind, let me know what you think. Also can you tell me how long you took the H1 and H2 antagonists before you started to notice improvement? Thanks!

Hi Julie- I am up in Canada, and I have an appointment with Dr. Carlos Morillo in Hamilton, Ontario. I got his name from Dr. Raj at Vanderbilt who was kind enough to help me by email with finding a doctor up here. I agree that MCAD seems to be involved in my POTS. What is confusing is that the mast cell issues seem to run on my mother's side of the family, while joint dislocations/pain run on my dad's. I did read a couple of things, including an article by Dr. Raj on the NIH site, that explained that some doctors seem to feel that POTS might be triggering MCAD, or the other way around (or both?). I find this all so confusing and ironic - here I am with an IQ that plummets on a regular basis, trying to sort out all this technical medical stuff. It's like a sick joke or something. Thanks for the med advice - I'll try to keep getting by with Benadryl for now and wait to start the others until after the TTT. I'm already worried that with the improvement I have from Midodrine and exercise that my body might not cooperate with the TTT and I might not get properly diagnosed.

Hi everyone - I have been reading the mast cell information people have suggested and I am wondering about some things - maybe you can help? I don't have a history of allergies with respiratory symptoms or asthma so I didn't think at first that the MCAD info would apply to me, but the more I read the more it sounds familiar. My maternal grandmother had dermatographia and died at 35 of Hodgkins disease, my mother has allergies and is very allergic to insect stings, and I have had lifelong trouble with skin reactions and itchiness to perfumes, synthetics, sunlight and many other triggers listed on the tmsforacure site. I also have skin reactions to latex and currently have about 95% of the symptoms listed on the site as being related to mast cell disorders. Like many of you, I am having a hard time finding doctors who have heard of POTS or MCAD - I am finally seeing a dysautonomia doctor in October. Would he be the one to ask about MCAD or if not, what kind of doctor should I be looking for? Also, from the articles about POTS I have been reading it seems unclear whether they think MCAD causes POTS or is caused by it, and there is a lot of overlap between the symptoms. Some of my worst symptoms these days are OI, fatigue, brain fog and feeling unwell, nausea, diarrhea, bloating, neuralgia, headache and skin itching. Is it worth trying an H1 and H2 antagonist to see what happens? I currently take Midodrine, Metoprolol and Synthroid. What doses of H blockers do people take and when during the day, and how long does it take to notice a difference? Would those drugs affect the results of the TTT I am supposed to have in a couple of weeks? I have been trying to wait to try any new treatments, but have terrible insomnia and discomfort. I have been taking Benadryl for the skin itching but it only partially helps. I'd really appreciate any insights or advice. Thanks so much in advance.

Just another unkempt recluse checking in to say - me too! I am still shell-shocked by how low my functioning has become (my once tidy house is in rapid decline and I don't have the energy to even open the mail most days). I'm hoping we all find a way out of this mess...

Thank you so much, Julie. This probably sounds silly but I have been afraid to do the at-home TTT on him, but you are right that it really makes sense to try to figure out what's going on and have a plan if possible. I am trying very hard to get proper treatment for my own POTS, and hope to have some energy to look after the kids soon. Your description of your son's infancy, suggestions and advice are deeply appreciated. Man, this is exhausting isn't it. Sarah

Your post fills me with terror. I am currently struggling to get proper diagnosis/treatment for POTS and am at the house-bound stage. However, over the past year my six year old son has had strange medical problems (GERD, joint pain, extreme fatigue and feeling unwell in the mornings, "mommy my heart is beating funny", insomnia...). I am terrified that he might be developing POTS; I have struggled with this for 25 years and my only consolation was that at least it is me suffering with this, and my children were healthy. I can't stand the thought that he might have to go through this, with such inadequate medical care, and I don't know how I'd look after him when I can't even look after myself at this point. Can other moms with affected kids tell me how POTS first presented and if there is anything they wished they had done differently, that might have made things go more smoothly?

For me, Celexa may have been helping my POTS symptoms but it significantly aggravated the chronic pain trouble I have had for years. Remeron and Cymbalta seemed to worsen POTS dramatically, particularly tachycardia and bp drops. However, at least one person I email with who has severe POTS as well seems to have been helped by Cymbalta. It probably depends on what is causing the POTS in the first place for each individual. Good luck with this, and let us know if something works for you!

I have had POTS flare-ups since I was 15, and I am now 40 and just in the process of being diagnosed. My first pregnancy went pretty well until the very end when my baby began showing signs of distress and had to be delivered by emergency C-section. My second pregnancy was very hard, particularly during the last trimester. Looking back, I was in a terrible POTS crisis, but was not diagnosed - I think that with proper identification of POTS and treatment things could have gone much better, and at least I would have known what was going on. I was so sick after my second child was born that my husband had to take almost a year off work to look after us both. I have never really recovered (my son is 6), and am currently going through the worst POTS episode yet. Again, if I had access to doctors who were familiar with and could properly treat dysautonomia, things might be different. I had always wanted a third child too but would never take the medical gamble - as it is I am currently unable to look after my two children without lots of assistance. Everyone is different, but I can't tell you how bad it feels to constantly feel like you are letting your kids down.

Can anyone clarify for me if there is a link between POTS symptoms and lymphoma? My maternal grandmother died of what they think was Hodgkins lymphoma when she was only 35, and now my first cousin on the same side has just been diagnosed with a rare form of non-Hodgkins lymphoma (B cell?) that has a gynecological presentation in her case. She is in her early 40s. She was told there is a genetic element to this kind of lymphoma; I have been having a terrible time with POTS symptoms and can't help but wonder if there is some kind of connection, but since I live in a medically underserviced area in Northern Ontario I have a hard time accessing medical resources of any kind, let alone who know about POTS, it's potential causes, etc. Thanks again. I know you are all stuggling too and I really appreciate the help.

Thanks for the advice and for letting me know I'm not alone. A couple of weeks ago, when things were really bad, I think my bp was dropping when I lay down, but now it does sound like something more mechanical. Simmy - why would there be esophageal constriction? If anyone figures this out, please let me know!

I am seriously running out of positions. For the last few weeks I have been trying to be upright more, but have had trouble with recliners. I wasn't sure why, but now wonder if it's the same problems I am having lying on my back. When I lean my head back on something it seems to cause chest discomfort, a strange sensation in my neck, trouble breathing...am I just imagining this one, or does anyone else feel like this? If so, any ideas why? Thanks in advance for any insights you might have. Sarah

Under the Research link in the POTS section of the dinet homepage there is an abstract of an article by Dr. Raj et al., that "less is more" when it comes to using beta-blockers for POTS. Apparently low dose beta-blockers can be helpful while a higher dose of the same med can make POTS symptoms worse.

I recently saw a geneticist and was tested for Dopamine Beta-Hydroxylase Deficiency, which causes POTS and has apparently has joint symptoms as well. Sarah

Your post describes how I have been feeling this summer too. I saw a lovely young neurologist who was familiar with POTS and she felt that many of the cognitive symptoms, as well as some other things I have been experiencing such as breathing and swallowing problems, could be the result of various parts of my brain being deprived of oxygen. I'm well into the POTS process but not even offically diagnosed, so will watch this thread with interest. It's awful when it takes too much energy to even interact with your children, isn't it. Sarah

I am facing the same dilemma and don't have an answer. I had a terrible time in June and July with tachycardia and if I had been able to see the cardiologist promptly I'd probably be taking beta-blockers right now. However, but the time I saw him my heart had calmed down a bit and I was having the most problems with OI and some other strange things like muscle weakness/tingling, air hunger... I started with Florinef and can only manage a tiny bit and now take midodrine as well. This seems to be helping, and I am not clear whether to add the beta-blockers or not. I have also read that people have a hard time stopping them, and as my cardiologist seemed to know little or nothing about POTS, I don't know how to evaluate whether this is an appropriate medication for me or not. Apparently the loop monitor showed I had episodes of heart block?/sick sinus symdrome? but I haven't felt these very much since starting the other meds. Good luck, and I'll follow this thread with interest. Sarah