LindsayI had an appointment with my cardiologist yesterday to discuss the bradycardia I had been experiencing. However, it takes about 6 weeks to get an appointment with this doctor, and by the time I was able to get in to see him, my heart rate had increased. As you may remember, I was having problems with a low pulse of high 30’s to low 40’s bpm. For the past week, my HR has been up in the 60’s and 70’s. That’s good news. However, the near-constant palpitations I’ve been having are not.
My doctor indicated that because I’m only taking 1/2 pill of a beta blocker per day, the dysautonomia symptoms that I had been masking with the beta blocker are starting to break through. Therefore, the heart palpitations that were greatly reduced by a full dose of the beta blocker are now only half reduced by half a dose.
Logical, but totally lame.
As I eventually plan to go off all meds when I start to think about getting pregnant (don’t get too excited, mom and dad, you’re not going to be grandparents anytime soon), it probably doesn’t make much sense to go back to a full dose of the beta blocker. For now, I will deal with the palpitations until a better option presents itself.
We also discussed whether I may be having an issue with mast cells. Towards the end of last year I brought up mast cells and MCAD (mast cell activation disorder) in a post when my doctor had indicated mast cell issues are occasionally found in POTS patients. Mast cells are cells that are found in tissues associated with blood vessels and nerves. They are part of the immune system and thus are important in immune and allergy fighting functions.
A study has linked mast cell issues to orthostatic intolerance (and POTS is characterized by orthostatic intolerance). The results of that study are here (scroll about half way down). My doctor and I agree that, while it’s probably unlikely that I have MCAD, it is at least worth ruling out. My doctor ordered a tryptase blood test yesterday. Tryptase is the enzyme released (along with histamine) when mast cells are activated. However, as tryptase levels are only elevated during an attack, my doctor warned me it is possible someone could still have MCAD despite a normal tryptase serum test.
Because the test results may not be conclusive, my doctor also recommended I start a histamine blocker treatment. When histamine is released, it goes to a histamine receptor. Apparently there are four receptors, but right now we’re only concerned with H1 and H2 receptors. When the H1 receptor is stimulated, it results in cardiovascular affects. H2 receptors are found in the stomach and digestive tract. My doctor indicated that the best treatment is to take both an H1 and an H2 blocker to block the antihistamines. The (over the counter) medications specifically recommended by my doctor are:
- H1 Blocker – Zyrtec
- H2 Blocker – Zantac
Apparently taking both the H1 and H2 blocker together should help with any mast cell issues, and if this is contributing to my symptoms, I should start to feel better in a couple weeks. I’m skeptical, but am willing to give it a try.
If you’re interested in learning more, the STOP POTS blog has a fantastic post about mast cells.
Also discussed at my appointment yesterday was the increase in muscle pain I have been experiencing. I often, if not always, have a low level of muscle and joint pain, but lately it has increased. A lot. My doctor suggested it might be mild fibromyalgia syndrome (FMS), as many recent articles have suggested a correlation between chronic fatigue, orthostatic intolerance, and fibromyalgia. FMS is one of those conditions that I’m all too familiar with (like ME/CFS and dysautonomia/POTS) where there is no cure; we can only treat symptoms. As the treatment (and symptoms) of FMS is not much different from that of ME/CFS and dysautonomia/POTS, I do not have to take any new meds.
There’s always a silver lining 🙂
Click here to learn more about fibromyalgia.
I will post again when I get the results of my tests. Until then…
“Fall seven times and stand up eight.”
–Japanese Proverb
Readers, how do you manage your challenges with pain?
Smell ya later.
Linds
I just mentioned MCAD to my doctor and she didn’t want to talk about it. She basically said we are trying to treaty my immune system with supplements and diet and mast cells are part of the immune system, so we’re hitting those, too. I have had idiopathic anaphylaxis as well as autoimmune angioedema, so this makes sense. I am SOOOO glad you posted this now. Can you tell me what mg or ml of Zyrtec and Zantac your doc recommended? Also, do you know if the tryptase test is useless if I’ve been taking antihistamines? (Unisom for sleep) Thanks for this post!
thank you for your comment! my doc didn’t specify a mg for the zyrtec or zantac, but said to take one zyrtec and one zantac (maybe they only come in one dose size?) twice a day. so, one of each in the morning, and one of each again in the afternoon. i haven’t picked them up from the drug store yet, but that’s on the agenda for this afternoon. my doc said to try that for 10-14 days and see if i feel any different. if not, he said to stop.
i think the tryptase test would be affected by antihistamines. my doc said the tryptase test only shows something during an “attack” or outbreak, which is probably less likely to occur while taking antihistamines. i take a mild antihistamine spray, and my tryptase results came back normal. kind of wish i had the tryptase test done yesterday since i was in the middle of an attack 🙂
oh well. hope this helps!
I’m glad I’m not the only one on a long-term journey to being med-free for pregnancy. I talk about pregnancy a lot on my blog, but that doesn’t mean a baby’s in the immediate future. When you want to quit all meds, you need to start WAY in advance, haha.
Have you seen this article: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/pdf/1756-8722-4-10.pdf
I have EDS-C, POTS and am being assessed for MCAD. In the meantime, I’ve responded dramatically to a low histamine diet, H1 & H2 blockers, low dose aspirin for flushing and ketotifen a mast cell stabilizer. I live in the UK and seeing a specialist to be tested can take a long time but I’ve found life changing relief including a reduction in:
Fatigue
Weakness
Poor memory; concentration/attention; problem solving
Apathy/Lack of motivation/enthusiasm
Flushing
Prickling left ear/cheek/neck
Prickling down backside of legs
Burning, sore mouth, ulcers, water blisters
Cervical spine & shoulder pain Musculoskeletal pain
Joint pain
Urinary urgency & frequency
Hunger/cravings
Excessive salivation/non-acid reflux
Right calf & knee pain
Left forearm and wrist pain
For me, limiting dietary histamine and histamine liberators caused the most dramatic improvement.
I had not seen the article – thanks for sharing it! Looks interesting, I’m going to read it tonight. I’m glad you mentioned low histamine diet – that’s something I need to look into!
What is your doctor doing to determine if you have MCAD? Are you being tested, or are they analyzing your symptoms for a period of time? I’ve heard different doctors use different methods of arriving at a diagnosis.
Lindsay,
I just came across your blog while searching something about POTS/dysautonomia. Have you ever heard of Mitochondrial Disease? I was diagnosed in March of 2011. I started getting sick in Dec. ’09, though. I was first diagnosed with POTS. However, as I developed more and more symptoms, it was apparent that more was going on. Well, as an ER nurse I am well aware that CFS and fibromyalgia are code for “You are fatigued all the time or you have pain in many different areas, and I don’t know why.” Is it likely that I was relatively healthy and then developed 3 different medical problems/diseases all at about the same time or that I have one disease that explains ALL of my problems? That’s mitochondrial disease. I had a muscle biopsy to determine my diagnosis, but now that I know more I know that a genetic test would be the much easier way to go.
I would encourage you to do more research about mitochondrial disease and see what you think. From the very little that I’ve read your blog, you and I have a lot of symptoms in common. If you have any questions, you can find me at 1fastnurse.blogspot.com I haven’t posted in awhile, but if you go to http://1fastnurse.blogspot.com/2011/09/what-mitochondrial-disease-means-to-me_5657.html you’ll see a list of my symptoms.
The 3 posts prior to that also describe mitochondrial disease (mito).
Hi Robin, thank you so much for your comment! I have heard of Mitochondrial disease but have to admit I do not know much about it. I took a look at your blog and we DO have a lot of symptoms in common! Thank you for bringing it to my attention – I will definitely take a look at your other blog posts about mitochondrial disease!
Hi Linds, did you get the result of your blood test? I may have missed the post. Also just wondering how you are going on the Zantac and Zyrtec? I am trying this combination now. I find though if I miss a Zantac I feel quite sick and have worse rebound heartburn. Have you experienced anything like this and can I ask what mg of Zantac you take? Thankyou!
the blood test was negative (normal). seems like all tests come back normal!
the zantac and zyrtec have definitely helped, but not with my traditional POTS symptoms. i have bad allergies and am often get rashes, so zyrtec has helped with that. and, i have GI issues, so zantac has helped with that, too. but, they don’t do anything for my tachycardia, dizziness, lightheadedness, etc.
i get rebound heartburn if i miss a zantac, too! i can definitely tell when i’ve forgotten to take it (like this morning!)
i take 150 mg of zantac per day