sideofsalt

Thank you!

Thank you! I'm reading through it now.

Hi Katybug, he did not mention mast cells, but he did ask me to verify that I was taking antihistamines and to simply continue. Can you point me to any resources that discuss this aspect of mast cells by chance? Also, as an aside, he told me that hives were autoimmune in nature and not a classic allergy symptom. However, when my allergies changed 2 years ago, I broke out with hives and itching when it seemed grasses were at their peak. To me there is a link of some sort.

Yes, I did react to dust mites and grasses big time. But not foods or trees. The doctor concluded I'm not allergic to the trees in my area. Yet, I do have my symptoms when the pollen counts increase.

I had my allergist appointment this week and was surprised that the allergist did not prescribe allergy shots for me right away even though I'm a candidate based on my previous doctors' assessments. Trees are going crazy in my area right now but in the scratch test, I did not show that I'm allergic to them. He based this on my current symptoms which has been unusual fatigue in the afternoons, and every time I go outside I experience a small amount of throat itching/coughing, some joint pains, and lots of adrenaline surges and chest tightness/pressure/sharp pains. Sometimes I'll get acid reflux and my esophagus will feel like it's smaller and peristalsis seems hindered when I try to swallow dry, chunky foods like nuts. Zyrtec does not make these symptoms go away, but Singulair and Benadryl mostly do. He did not discount that they work, but he said I'm not showing the allergy reaction that shots would help! Those symptoms would be sneezing/runny nose/itchy eyes. We did a breathing test before and after using an inhaler and I did show minor improvement (and some of my chest tightness released afterward), so I was given an inhaler to test whether or not I have asthma over the next few weeks. His conclusion is that POTS is causing my symptoms, and I believe that it's allergies being my POTS trigger! I am grateful to not have to drive to get allergy shots every week, but I am a little stumped...

I dropped propranolol with no effects in mid-November to prepare for a tilt table test (TTT) a few weeks later in December. I haven't started it again. I tried to stop the midodrine a few days prior to the test, and was good for a couple of days, but had to resume it again. I wonder if you have any sensitivity to seasonal allergies. For me, the season has begun early and a lot of symptoms I'd normally attribute to POTS have popped up the last couple of weeks along with allergy symptoms (terrible, surging adrenaline). It's a long shot and I don't know where you live, but you said that despite the medication, you were having dramatic symptoms. In any case, I recommend seeing your doctor as soon as possible. Wishing you the best.

I used medium strength knee-high compression hose which helps at times but are uncomfortable for me if it's barely warm outside or if I'm on an airplane, ironically, when I need them the most. I got a new prescription for "TED" stockings but I haven't found a place that stocks them yet. He prescribed them so that I don't have to rely on midodrine as much to raise my blood pressure. I believe anything above the low strength requires a prescription.

Hi and thanks Katybug! This gives me some points to discuss with my doctor. My immune system seems ever more sensitive, I want to be cautious but need to proceed with desensitization. What happens when you have a delayed reaction like you mentioned? Do you just take something like Benadryl?

Great posts and gives me some ideas. I always travel with at least 16 oz. of water, my pill case that carries 3-days' worth of all of my medications and supplements, nuts and fruit for snacking (I'll bring a whole meal with me for longer errands or journeys), a small salt container, and I used to carry a list of meds/conditions/emergency contacts but I need to update that.

Welcome Christina! Wishing you much strength, and you're in great company - there are so many kind and resourceful people on here.

I would like to know if you have had experience - good, bad or so-so with allergy shots and/or drops. I am a candidate for them and aim to start them soon. Allergy season is hitting me hard and early this year, and my otherwise reliable Zyrtec isn't cutting it for me. I'm also going back on Singulair which helps a lot more but not 100%. Any precautions from a POTS perspective as I begin these? Thanks!

I've never worked with one before, but would a compounding pharmacy be able to help you? Perhaps someone on the board with experience can share. I wonder if the Mylan brand didn't work for you because of fillers? I've used that brand and others, and notice that the Mylan pill is so much fatter than any others.

Thank you for posting this. I have pregnancy induced POTS and 99.9% of my symptoms are attributable to hormonal fluctuations. I love reading studies and data that point to the origins of this. I am grateful that the researcher's focus is on how sex hormones effect autonomic control of blood pressure, body fluid regulation and temperature regulation.

Thank you for sharing Bird and I'm sorry you had to go through this. This is especially useful since SSRIs are considered one of the main lines of therapy for POTS patients, according to one of my doctors. Did your doctors offer you any non-SSRI alternative after what you went through?

My doctor recently reviewed my medication regimen and said that the general classes of medications to deal with my POTS was: Midodrine Fludrocortisone SSRIs (I've read SNRIs may be even better for certain types of POTS) Beta Blockers I stick with midodrine because it works for my primary problem right now - hypotension. I think gjensen had a good point about focusing on your main concern and starting with that. I hope you find relief soon.

Zyrtec works well for me to manage food and environmental allergy reactions. It took a while to get over the drowsy side effect but it eventually went away. I tried Allegra but felt awful between doses. Claritin is too weak for my needs.

Pre-dx a couple of years ago, some of my biggest POTS episodes coincided with the onset of seasonal allergies. I eventually developed hives as a response to environmental allergies and foods. Since adrenaline clears excess histamine, and adrenaline is what makes blood vessels constrict (without it leads to hypotension in POTS), then why aren't my specialists addressing the adrenals directly? I’m curious about adrenals and their role in POTS, and separately, Addison’s. It may not be that simple or direct, but I though I should ask in case you have experience exploring any paths of treatment related to this. I may have done some initial testing at the time of my dx but I only recall ruling out pheochromacytoma.

Hi BeforeTheMorning, I started working with a registered dietitian 1.5 years ago and it was one of the top 3 things that has helped me feel better since my POTS dx and one of the best investments I've made in my health. My dietitian helped me by designing a diet and supplement regimen to help me reduce histamine (among other things) which I am confident put me on the path to healing my POTS. It has also helped me greatly reduce hives and reactions to foods, rebalance my cholesterol, and reduce migraines. Family and friends often said that what I was doing was "Paleo" although it really was just a plan tailored to my labs and symptoms. It emphasized proteins, vegetables, fruits, and some gluten-free grains (I don't think the grain part is Paleo). I highly recommend that you consult one before making any changes to your diet. Many are covered by insurance too! I had to check with 3 different doctors to get a solid referral. Another bonus about working with a dietitian is that they may be one of the most holistic practitioners you may work with - the ones I work/worked with take everything into account.

Congratulations Gemma! I am deciding whether pregnancy is a possibility for me as I developed POTS about a year after I stopped nursing my son. I had an uneventful delivery and POTS was not discovered then so I don't have any experience to share with you. I feel it is frustrating to not have more answers going into it, but my doctors have told me that we just don't know how our bodies will react until we are actually there. The more I consider pregnancy, I wonder about the realities, such as how to really get off my medication. Can you share how you stopped your medication prior to pregnancy or did you just quit when you learned you were pregnant? And how symptomatic (and what types symptoms) were you just prior to pregnancy? Many thanks and best of luck with your pregnancy! I hope your symptoms resolve soon.

Thanks Raisin - I will definitely check into it when I see my OB next!

I have been trying to exercise to reduce my POTS symptoms and improve my cardiovascular conditioning, but feel at this time, I'm not quite ready for a 1-hour class like I used to take pre-POTS (like pilates and cross training). The most impressive site I've found on the web so far is www.fitnessblender.com. They have a variety of workout types, intensity levels, and equipment types (including none) and they are all free. None are specifically POTS-specific, but this just may bridge the gap to a full-size class for me. Enjoy!

Hi Katybug, years ago I did skip the inactive pills with great success. That is a great idea and I may revisit it when we're done having kids. Thanks for reminding me!

Thanks to you ladies for bringing this topic up. Raisin, for the last several months and every other month, I have had sharp pain in my lower right abdomen during or around ovulation time. I've thought it to be appendix-related because of the location but the symptoms don't progress, and go away after 24 hours (with no additional symptoms), so I've written it off as ovulation pain although the most ovulation pain I've ever experienced in my life. At times it is pulling on my right pelvis. I have not had those symptoms link with POTS symptoms yet, as far as I can remember.

Estrogen-containing birth control has helped me for a short period of time where I almost had no POTS symptoms at all, but I have a tendency towards migraines that are related to estrogen fluctuation. I do well for about 3 months then the migraines become too much to bear probably due to the sudden drop-off of estrogen when starting the inactive pills. The migraines eventually diminish the POTS symptom relief for me.

Thank you for sharing your experiences. I do get to see a rheumatologist later this month and will run this all by him. I did get my autonomic results and it did not show neuropathy.